Blog
My story is about my cancer battle, from ignoring the signs to misdiagnosis, emergency surgery, and recovery.
A Very Personal Story
“Tell the story of the mountain you climbed. Your words could become a page in some else’s survival guide."– Morgan Harper Nichols
October 2020 – Just another day
My body was on autopilot when I woke up at 6 a.m., as usual. I've been tinkering with my bedtime routine and monitoring my sleep habits, and I've learned that I only need six hours of sleep each night to wake up feeling good and ready to face the day. It's winter and bitterly cold, especially in the early morning hours. The sun hasn't had a chance to break through the fog outside. I put on my fake UGGs and chocolate velour dressing gown and went downstairs to make my usual bullet coffee.
I plugged in my headphones and started my playlist of morning motivational music and sermons while I waited for the kettle to boil. The first song was "Connect with God" by Above Inspiration, and the second was "Speech That Broke the Internet" by Matthew McConaughey. I could hear the deep Texan voice in my ears, and I felt a sharp pain in my lower abdomen. It hit me so hard that I fell to my knees. The pain didn't last long; it came and went quickly. I got back up and shook off the residual pain that was still there. Then I jogged in place for a bit and finished making my coffee.
I noticed that I had trouble going to the toilet all month, but the pain in my lower abdomen had not come back. I might have been eating too much. The Eat Out to Help Out program had put pounds on my waistline, and I kept "Helping Out" long after it was over.
The Bullet blender came out, and the Just Eat notifications went away. It was too much work to reinstall the app after I deleted it because, let's face it, I was going to have a cheat day now and then.
I had no idea that the stabbing pains and changes in my bowel movements were signs of bowel cancer.
Nov – Dec 2020 – Christmas
Working from home does have its perks. Getting out of bed and not having to look at the traffic reports. A crisp, clean white shirt with fleece jogging pants underneath. Well out of the camera's view. I found the best angle for video calls: the camera is pointing at the corner of the room where the big flat-screen TV is, facing the door, and hiding the bed and mirror. The company has been kind enough to let us have the equipment to work from home. My Dell laptop has a docking station and two monitors on a big corner desk. I used some of my self-help books to hold up my laptop as a third screen. Self-help just keeps giving. They gave me a nice office chair, a wireless keyboard and mouse, and more. My son built me a lot of LEGO figurines, that are all over my desk. LEGO is like therapy for him because he has ADHD, and it's his favourite thing to do. For Fathers’ Day, he made me into a LEGO figure, and there are characters like Jaffar from Aladdin and the Mandalorian from Star Wars.
My job has always been my therapy. I could finally see myself on a long-term career path, working my way up the ladder to help my company grow around the world. It's where I can be someone else and get away from my boring life. I've always felt like I was living a double life. One life for my Asian family and friends and another for my mostly white coworkers. I’ve recently felt very confident and competent at work without sounding cocky. I would over-pronounce words to make a point and walk with a swagger. I was flirty but polite, and I could use humour to make things better without hurting anyone's feelings. I said it was my Les Brown voice.
My Asian family would think that all of the above is wrong. I walked with my head down, looking at the floor and tiptoeing around to avoid my aunts and uncles. I was careful about what I said, and it felt like I was walking on thin ice. I could still be funny by making fun of political correctness and cheap jokes about what it would be like if Boris Johnson were Pakistani, how our family and monarchy look so much alike, and how bad the West has been for the Middle East. The whole time, I didn't talk about myself at all. This is my Paul Chowdhry voice. But I've always thought that I was too white for Asians and not white enough for my friends.
I haven't been able to eat much since Christmas because I've been so constipated. It was making my life miserable. I felt weak and tired, all the time, which made it hard for me to sleep. I decided to increase my fibre intake to help with my bowel movements and drink a lot of coffee to try to get rid of this tiredness. None of it worked, and the stabbing pains are back and getting worse.
My lower back hurts and my lower abdomen. By Christmas the stabbing pains have turned into a dull ache, and I can feel a lump on the inside of the left side of my lower abdomen. I feel like Joey from Friends when he had a hernia. I kept pushing on the lump which offered little relief.
My family and friends notice my swagger has disappeared and that I'm walking and sitting awkwardly. They also saw that I had lost weight and wasn't eating much. Everyone is telling me to go to the doctor and after a lot of nagging I promise them that I will make an appointment in the new year.
Jan 2021 – Feb 2021 – My world shattered
My father fell ill with COVID.
He had many health issues, including angina, kidney failure, and blood flow problems. He followed the government’s advice, isolated himself, and followed the rules, but unfortunately, he caught the coronavirus. After experiencing difficulty breathing, he was admitted to the hospital.
He spent his entire time in the COVID ward, which meant no one could visit. The only way to communicate with him was either by calling his phone—if he or the nurses had remembered to charge it—or by FaceTime using the ward’s iPad, which was, of course, in high demand. There were days when we were told he was fine, sitting up in his chair, having dinner, and making conversation with the nurses. Other days, he was being fed oxygen and couldn’t speak to anyone.
Over the past few years, he had been rushed to the hospital on several occasions. Even when no one the doctors had written him off, he managed to push through - I honestly thought this was another one of those times. I was wrong. Dad caught pneumonia and went downhill very quickly. The call came on the night of February 1, 2021, to come and say your goodbyes. I remember getting changed into the PPE gear, in a toilet, on the ward, we took in turns, 2 at a time, to see him. I remember pairing with my youngest brother, who had travelled from Bradford. I took my father’s hand and pleaded with him, and with God, but it was futile. On the morning of February 2, 2021, my father passed away.
My youngest brother supported the family and took ownership of arranging the funeral, which, in COVID times, was extremely difficult. It was during this time when I recognised the important people in my life and how I had neglected them for so many months and years—my family! It’s fair to say my health issues were of no concern during that time, but I felt it was important to pick up with haste after the burial.
The support of my partner was a blessing, and without her, I do not know where I would be today. The loss of my father had a devastating effect on me. I went to see my GP and told the doctor about all my symptoms, when they had started, and that my father had passed away. The doctor examined me by pressing on my abdomen where I could feel a lump forming. She said it was constipation, mainly due to stress, and the lump could be a blockage. She prescribed a crate of laxatives, to be taken morning and night, which I had to consume over the next four weeks. If nothing changed, I was to come back to be reassessed. The laxatives helped ease the flow of my bowels, but the lump started to feel bigger.
March 2021 – Misdiagnosed IBS
I went back to my GP’s surgery after finishing the course of laxatives. I was in more pain, the lump felt bigger, and I was experiencing stomach cramps. I was sitting with a different doctor this time, who told me I had IBS (Irritable Bowel Syndrome). He recommended that I follow the FODMAP diet and prescribed Buscopan IBS Relief.
When I arrived home I started Googling the FODMAP diet. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols. The idea was to restrict certain food types such as dairy, wheat, beans, and lentils, and to avoid certain fruits and vegetables. I had done something similar with the 10-Day Detox Diet by Dr. Hyman, so I was already avoiding most of what was recommended.
After removing all the suggested food types for around four weeks, you slowly reintroduce food groups one by one, and by process of elimination, you should figure out which foods are causing you discomfort. After two weeks my symptoms had worsened, everything was dialled up to a 10 and I was struggling to poo, even with the laxatives.
After doing some research on IBS, I discovered there are no records of a positive IBS laboratory test or otherwise. It is, therefore, a GP’s educated assumption based on symptoms alone as to whether someone has IBS or not. From the research I conducted, it didn’t mention anything about a lump in the colon. So, when I saw the same GP as last time I insisted on a test of some kind to determine what was going on inside of me.
I was blunt with the doctor when I said that the current method of throwing medication at me in the hope it will work isn’t working. The doctor was hesitant to carry out any further tests, claiming that I appeared to him as ‘fir and healthy’, he strongly believed it was IBS, but after digging my heels in he agreed to carry out a blood test. I wasted no time and walked over the road to the walk-in clinic at the QE2 Hospital in Welwyn Garden City. The nurse told me it normally took five days for the results, and my GP would be in contact.
On Sunday morning, just two days later, I received a voicemail from the doctor asking me to call him as soon as possible. I called back and he asked if I was suffering from a cold or flu, or if I had COVID. I told him that I hadn’t and that my workplace was carrying out regular FIT checks, of which I had completed and passed recently. He explained that my inflammation markers were high and he asked me to do another test, just to be sure. So, I went back to the QE2 on the Monday for more blood to be taken. Again, two days later, the doctor called to say the results were the same and that he would speak to a specialist at Lister Hospital, Stevenage (the larger, main hospital) for advice and get back to me.
The doctor called back hours later and asked me to admit myself to Lister Hospital as an emergency day patient, where a specialist would be waiting for me to carry out more tests. I felt a little ting of relief, for being so persistent, but that sense of relief dissapted when I arrived outside Lister Hospital. I felt a sense of dread being back so soon after my fathers’ death.
I was told to provide a stool sample to help with the investigation and another set of bloods were taken. The specialist said, even without the results, that I did not have IBS and would need a colonoscopy to find out more.
When I spoke to my line manager she advised me to look into the private medical insurance that work offer. I called the provider and explained the situation and they took over the case and I was booked in for early May at the Spire Hospital in Harpenden for a consultation.
May 2021 – Private medical care
I was referred to the Spire Hospital in Harpenden, where I was met by a skinny, lanky, very excited consultant named Dr. King. He invited me into his office, and as he sat down, he looked through my test results and then slammed his hands down onto the desk. He looked me square in the eye and said, “You poor sod!”, before bursting into laughter. I laughed with him because I knew I had been in discomfort for some time, but it seemed to me that I should know more about what was going on with me. Fortunately, he told me what I had missed.
He explained that the stool samples held the key to understanding what was going on with my bowels. The stool samples test had measured the calprotectin in my system. Calprotectin is a protein biomarker present in faeces when intestinal inflammation occurs. It’s measured in milligrams; People with 0-20 mg are considered completely normal and healthy, as some inflammation exists in everyone. Those with 20-200 mg might have a cold or virus/bug in their system, something the body would normally fight off itself. Levels of 500–600 mg almost definitely indicate an inflammatory condition which needs to be investigated further - I had over 2000 mg! Which meant it needed immediate medical attention.
Dr King booked me for a colonoscopy, which he would perform. The procedure should be able to tell him more about what was going on inside me. He warned me that the prep would be the worst part. I took the prescription for the bowel prep and handed it over to the pharmacist, who gave me a sympathetic look as she handed over the bag. The night before the procedure, I opened the innocent-looking sachets and poured them into a large Pyrex jug. The sachets were a form of laxative meant to clear the bowel of any waste. I thought it would have the same affect as the ones I had taken previously. I assumed I would be fine—plus, these were orange-flavored sachets, yummy!
Nothing much happened at first, but as soon as I let my guard down, this weak diluted orange-flavoured mixture wreaked havoc on my stomach, my bowel, and my bottom. The warning label did say to keep the toilet vacant after taking the prep, but I had no idea of the revolting, explosive effects it would have on me all through the night. This was the industrial version of Mr Muscle bowel unblocker.
The next day, after very little sleep and burping the entire morning, tasting the fizzy, weak, orange-flavored mixture, I made my way to the hospital with my younger sister. Because I would be under local anaesthesia, I wasn’t allowed to drive. I had an Uber voucher waiting for the return trip. I was given my own room and asked to change into the customary hospital garments, with my dignity hanging by my ability to tie knots behind me; the garment also had a flap for easy access to my rear. I was escorted to the procedure room, where they inserted a cannula for the anaesthetic and asked me to lie on my side. The flap came open, and without warning, the tube fitted with a camera went up my rear end, and off we went.
I felt it go in, but all I could feel was pressure. I had a sense of giving it a name as it felt so intimate—maybe holding hands—but as they came around the first bend, I felt a sharp stabbing pain, only this time it felt like I was being stabbed from the inside out! I screamed and I begged the Dr King to stop. The nurses told me to “calm down” and that I “shouldn’t feel a thing,” shouting, “Just breathe”. Dr King was quick to act and gave me large dose of the anaesthetic, which knocked me out.
I woke up all hazy with a nurse calling my name. I looked toward her, and she said, “Oh, good, you’re up. I’ll get the doctor for you; it won’t be long”. I was back in my room, completely out of sorts, my head spinning and my vision blurred. By the time the doctor arrived, my vision was a little better, but my head was still all over the place. The doctor, who was the consultant Dr. King, sat down next to me all sheepish, very unlike the first time we met. He was followed in by a nurse wearing a red uniform, unlike the others I had met who wore blue or white. He stuttered before explaining that while I was screaming in pain, he noticed a lump and he needed to know more but couldn’t get near because of the terrible noise I was making and how tense I had become, which forced him to sedate me. He had found a lump, a tumor, just as I went under, and he said the dreaded word: “We think it is CANCER.”.
I burst into tears with the thought of my family. How was I going to tell my mother? She was still mourning the death of her husband, her life partner. How was I going to tell my brothers and sisters, who were still grieving the loss of their father? How would I tell my children? Who were still coming to terms with the concept of death? This couldn’t be true.
Dr King could not apologize enough for what he had discovered and explained he had taken samples, biopsies, and printed tattoos around and on the tumour, which will be tested to determine the type of cancer I had so they could provide treatment and care. The cancer nurse (wearing red) handed me a pack with all the contact details. As they left, I was alone in what felt like a cold, dark room. The news of cancer sucked all the colors away, leaving just shades of grey. I sat there trying to come to terms with what had just happened, what Dr King had told me.
As I gathered myself, the nurse asked how I was going to get home. By this time, my sister would be at work, so I said I would get a taxi. The nurses were not at all happy and insisted I call someone, but I didn’t have anyone else to call. I didn’t want to tell anyone what had just happened. I felt ashamed to have to call and burden someone for a lift. I said I would get a taxi, but the nurses were not comfortable with the idea; they even offered me a lift home, but I didn’t want it.
All I wanted was to sit in a stranger’s car who didn’t know me, who didn’t ask any questions or offer their sympathies, so I could think about how I was going to break the news to my family.
I managed to convince the nurses of calling me a taxi, and as we got back into Welwyn Garden City, I asked the taxi to stop at the Shell garage station so I could walk the rest of the way. It was only 20 minutes from home, but it felt like an eternity. I was limping and cradling my abdomen, which felt sore. When I reached my front door, before I had even taken my keys out of my pocket my wife opened the door. I looked at her and I wasn’t sure what to say. I just fell to my knees, I felt broken, I couldn’t contain the tears, it felt like a dam had burst. As my wife came to console me, I told her I had cancer.
June 2021 (Part 1) – Avengers assembled pt.1
I managed to pluck up the courage to tell the rest of my family. As you can imagine, everyone was shocked by the news, my mother’s reaction was the worst; she was more upset about it than anyone else, as I initially thought she would be too. She sat holding my hand, weeping, and telling me it was going to be OK, over and over again. I wasn’t sure who she was trying to convince—her or me. My brothers and sisters—I have two of each—were very supportive. Since Dad’s death most of my siblings had agreed to make more of an effort with one another, and we had, in the short time, become closer than ever.
My little sister told me that she would take me to all my appointments; she was very insistent on that, and we made a pact that she would have first refusal. My partner and I sat down with our children, who were 7 and 8 years old, and we explained that I had a tumour and would need to go to a lot of appointments. In hindsight, this was unfair to them and naive of me; the kids knew all too well that I had cancer but they did their best to play along, (bless ‘em). I asked everyone to keep it to themselves for the time being, as it was too early, there were a lot of unanswered questions, e.g. what type of cancer I had and how long I had to live. I didn’t say it like that, but ultimately that was what I was thinking.
Much like a pregnancy, you might not tell your parents until your first trimester; we shouldn’t tell anyone else until I had seen the oncologist and devised a plan of action. My partner wanted to be there at every appointment, but I told her she couldn’t come. I did it to protect her from any further bad news, but eventually, I gave in on the later appointments. She has been my rock since my father’s death, offering comfort even while I recovered and grieved at the same time.
Work was very supportive, and my line manager Jen had a similar experience with her father. She was tremendous, and things were very informal between the two of us. She advised me to get a sick note as soon as possible to cover the coming months. Regarding my wage, my pay would be cut in half, but she looked at all my holidays and other ways to cover as many days as she could. My pay did restrict me, but that wasn’t a concern for me—it just meant that I wouldn’t be buying a new car yet and would be shopping at Aldi more often. And if you haven’t tried their salmon Wellington, you must—it is delicious!
The biopsies, which were taken during the colonoscopy, came back negative. All they could see were dead cells, so I was asked to come into Spire Hospital to have a CT biopsy. This is where they scan you under the CT (computerized tomography) machine, which is being pushed back and forth through a large doughnut. While they passed me through the hole, they mapped out where the tumour was and drilled from the skin all the way down to the tumour. I was given a local anaesthetic before the procedure, so all I could feel was pressure. Lastly, they took a long and thin apparatus called a biopsy needle, which took small chunks from the tumour. You hear a loud clicking sound like the old firelighters my mum used to fire up the hob with. The small chunks were then sent to the lab to be tested to determine what type of cancer I had.
The results came in, and (you’ve guessed it) the tumour was cancerous, but there was some good news: I had adenocarcinomas, which is the most common type of bowel cancer. This gave Dr. King confidence as they have treated a lot of people with this type of cancer, and the success rate was high. The bad news was that the cancer was deemed as “advanced” and it was pushing into the tissue cell wall and into the blood vessels, which could make it tricky to perform surgery, as the tumour could get stuck to the tissue and blood vessels.
I was referred to Mount Vernon Hospital, where they had a dedicated cancer centre. I met Dr. Harrison, who started with his biography. Apparently, he was a very sought-after man, a doctor who had been headhunted by many private firms and those on Harley Street. Harley Street is famous for its large number of private specialists in medicine and surgery since the 19th century. He went on to say he declined all their offers as he didn’t want to commute to London and wanted to be close to home. He was very proud of his success and gave the impression he was the man when it came to cancer treatment, so I was in very safe hands.
Dr Harrison explained he would need treat the tumour with chemotherapy in the hope that the tumour shrinks and pull away from the tissue wall and blood vessels. He was keen to start chemotherapy as soon as possible, as the tumour was very close to a main artery. He was glad that I was young, as it gave him the ability to offer a lot more than his usual clients, who were over 60 years of age, and he wanted to “throw the kitchen sink” at me.
Dr Harrison prescribed the highest dose of chemotherapy possible and gave me a leaflet about the type of chemo I would be on, called Fluorouracil—also known as 5FU—which is one of the most commonly used drugs to treat cancer. I would have chemotherapy once every two weeks at the Spire Hospital in Harpenden and continue the treatment at home—a little more on that later. There were a multitude of side effects, he told me, but I would be prescribed drugs to balance them out. Before they could do all that, they needed to check if the cancer had spread by performing a PET (positron emission tomography) scan.
To perform the PET scan, I had to visit another part of the hospital, at a later date. When I arrived for the PET scan, I was seated in a chair that looked and felt like it was designed for Frankenstein. The chair was huge and hard; I had to use a stool to get onto it. Then, I was injected with a small amount of the radioactive drug through a cannula and put into a separate room for the drug to pass through my body, usually one hour before you are called in to perform the scan. The PET scanning machine was similar to the CT machine, only this one was a large tube that you were put into. The space was very small and narrow, and you were to remain very still while the machine captured and created a 3D image. The whole process took about 40 minutes, and I dozed off as soon as they put me there, only waking up by the tannoy instructions to stop fidgeting. I couldn’t help it—I was tired of not having anything to eat prior to the scan, as recommended, and I was experiencing a slight amount of claustrophobia.
The other thing that Dr. Harrison had booked me in for was a catheter port to be inserted to help with administering chemotherapy. The idea behind the port was to have it installed under my collarbone, with a small tube inserted into my neck vein. The port would sit just under the skin, allowing the cancer nurses to administer chemo through it rather than putting in a cannula every time. The operation took no more than 20 minutes, and I was able to walk out straight after. The stitches would dissolve, and I would be able to have chemotherapy after a week. I could feel the port and tubes stuck into my neck; at first, it was hard to swallow and turn my head to the right, but I got used to it being there after a while. The PET scan and the operation for the catheter port were done on the same day, and in between the appointments, my sister and partner had a meal at Las Iguanas, Watford. You’ll see that every appointment was either followed by a meal out, which was nice as I paid more attention to the menus than the procedures or appointments. It felt good and helped with the anxiety I was feeling. I knew that the further I went with chemotherapy, the more I would lose something of myself—that I wouldn’t be Mo anymore—and the drugs would change me and dictate who I was and what I could and could not do.
I met with the nurses who would be looking after me while I was having chemotherapy, and they were lovely. I was worried about chemotherapy and the side effects, especially losing my hair. I was already balding, so I didn’t need any further assistance in that department. I kept looking back at my previously semi-healthy life, looking at photos and meal plans and all that extra energy, I used to have—all gone with a big blow to my abdomen with the news of cancer or even before with the symptoms—and thinking, where did I go wrong?!
June 2021 (Part 2) – Avengers assembled pt. 2
It was early, and I was wide awake. I knew that because the other half was still in bed—she was usually up at the crack of dawn, and it was still dark outside. I got up and made my way to the kitchen to fill the kettle for a cup of coffee. As I was measuring out the coffee, I could sense someone standing behind me, looking, staring right into the back of my head. As I turned around, I saw him just standing there smiling.
“Dad… what are you doing here?!”
“Madhi, I have to go.”
I was startled by the pop and whistling of the kettle; it forced me to break eye contact with him, for a few seconds, and as I turned back, he was gone. I ran after him through the living room, out into an endless corridor, shouting,
“Dad! Wait! Please don’t go!”
I woke in fright, breathing heavily, my heart racing and sweating profusely. The other half sound asleep next to me. The Emma mattress meant that she didn’t feel me jump out of bed. I made my way to the kitchen, through the living room. The kids were up, sitting on the sofa with the TV off—very unlike them. I had an eerie feeling I was still dreaming. They gave me a strange look, probably because I was looking at them strangely. I walked on through to the kitchen and filled up the kettle. As I poured the coffee, I looked over my shoulder, waiting for him to call me by the nickname he gave me, Madhi - it means “the guided one” in Arabic. The feeling when I was standing in the kitchen wasn’t the same, but I kept peering over my shoulder for a while, hoping he would smile at me one more time.
The WhatsApp group was in full flow—an absolute must, as you can keep everyone updated all at the same time and not miss anyone. I had told some close friends, those that I was in contact with most of the time. We were always planning to go out and eat every month. I didn’t want to keep declining the invitations without a proper reason; I thought having cancer was enough of a justification. They’re a great bunch of lads, very understanding and very supportive.
When it came to my family, not everyone wanted to be a part of the group chat, but at least I offered them the opportunity. The group was called “Samad’s Road to Recovery,” a positive spin on things—Lord knows that I would be needing it by the bucketload. Someone had shown Mum how to use voice notes, and she was tearing it up! It was like a toddler who had figured out that by following the rope on the back of the doll, it would make it speak, and she did it over and over and over again. Kidding aside, it was great hearing Mum’s voice.
I was on a strict diet of no processed meat, no plant-based foods, no foods high in saturated fats, no artificial sweeteners, and no smoked or cured meats. Oh, and no chili. What?! No chili?! I’m Asian, and we sprinkle chilli powder on our cornflakes. The consultation for chemotherapy went well. I kept being reminded of how ‘young’ I was and how it was so ‘unfair’. I needed to have my blood taken before every chemotherapy session. The nurses explained they would be giving me the FOLFIRINOX (FOLFOXIRI) drug, used to treat ‘advanced’ cancer, which is an abbreviation for:
FOL – folinic acid (sometimes called calcium folinate or leucovorin)
F – fluorouracil (5FU)
IRIN – irinotecan
OX – oxaliplatin
AKA 5FU. Every two weeks for three months, therefore six rounds of chemo before I was scanned again to see if there was any reduction of the tumour, with the hope they would be able to operate on me. If there was little to no reduction of the tumour, I would go for another round of chemo. It was all in the leaflet.
On June 21st, the first chemotherapy session took place. I was dropped off by my older sister and my partner, who wasn’t allowed in due to the COVID restrictions within the hospital. So, while they went off to Ninos to enjoy a delicious brunch, I was sat linked up to tubes and machines for the next four hours. I walked up to reception, who took me through to the ward where the cancer nurse told me the 5FU was delayed due to the courier being stuck in traffic. Great! If I wasn’t anxious enough, now I had to wait even longer to start the whole process. I unpacked my bag of goodies we bought from the Esso station, as I forgot to pack any food (that went on the list too—must bring food as I’d be here for some time, so it was worth having something to nibble on). I brought my tablet with me, so I had something to watch, a picture of my kids, and a book given to me called “Doctors Get Cancer Too”. I know it sounds morbid, but I found reading books helped me process what I was going through and what might come next. There were so many similarities between the book and my experience so far, but equally many differences. It was a great read, and I thanked my partner’s friend who suggested it to her.
It was worth keeping a list of essentials - a sort of checklist to make sure you had everything you needed to help you get through the day. On the day, the first cycle seemed easy. I had a wonderful nurse looking after me, and we spoke about our children. Hers were a lot older than mine, but she still remembered so vividly her children around seven or eight years of age. I think that’s like all parents, especially mothers—they never forget. I stuffed my face with BBQ-flavoured Hula Hoops and a cold peach iced tea. Then the second cycle, about 20 minutes in, I started to feel dizzy, had cramps in my right leg, and was sweating. I pressed the buzzer, and the nurses looked at me and knew exactly what I needed—more anti-sick. As soon as the injection went in, I felt a huge amount of relief. I didn’t know what was going on with me, but luckily, I had such fantastic staff around me.
The second cycle made me feel drowsy, which the nurses said was normal, and most people would try to take a nap, which I did. I slept for about 20 minutes and saw my phone had been blowing up with messages and voice notes asking, “How am I?” and “Why haven’t you replied yet?!” and “What’s gone wrong?!”. I responded on the group chat to say I was fine and there was nothing to worry about. After the chemotherapy had finished, I was given an infuser that looked like a plastic drink can with a balloon inside. They attached it to my catheter port and said I would be continuing the chemotherapy at home. The infuser would be removed after two days, which needed to be done at the Spire Hospital. I was also visited by the pharmacist, who gave me a list of medications I would be taking, including a booster injection which I needed to take after the infuser had been removed to help boost my white cell count. Within the bag were also strong painkillers, laxatives, mouthwash, and steroids. She gave me a printout of all the medications with the dosage and when to take them.
Getting home and unpacking the medication, we thought it wise to get a pillbox to have the meds ready in advance. The chemotherapy session went well— a lot better than I thought it would be. I thought it would be a good idea to get everyone out for a meal, as the restrictions had been loosened, and I felt that, as time went on, I might not be in a condition to get out as much. We went to The Turkish Kitchen, Hatfield. My mum and my sisters had never been, and I was a big fan of their food. They had since refurbished the place, and the presentation of the food had changed too. The meal was a huge success! Everyone there was talking and laughing, and I thought to myself, if this should be our last meal together, then it had been a great one. Again, not meaning to sound morbid, but I couldn’t help feeling that my time was running out, and should the worst happen, I’d made up for it as much as I could.
I went out to old friends and family—those that I had fallen out with, mainly due to lifestyle choices rather than a feud. I apologised and asked them if there was anything that I owed; they should say so now so that I didn’t miss the opportunity to pay them back and I could go on to the afterlife with peace of mind. I’d arranged for funeral cover; I had to have paid a full year before it was fully activated, otherwise I would have lost the money I had put in—money that could have been used elsewhere. Nonetheless, I was confident I would last at least a year. I left the instructions with my little brother, as he had done a wonderful job with our father’s burial.
On June 28th, I woke up with severe chest pains. I struggled to breathe, and my rib cage felt like it was going to rip out of my body, like the thing in Aliens. My partner called the ambulance, and they came straight away. After questioning and observing me for a short time, they decided it was best to go to the hospital. I arrived at Lister, Stevenage, and was put into a cubicle so that I was isolated, as I was considered high-risk. The doctor thought I had a blood clot and sent me for an X-ray and CT scan. They gave me morphine for the pain, and one doctor asked me if I was allergic to anything. I told them penicillin. He replied by suggesting the nurse administer penicillin through intravenous (IV) injection, which I insisted we didn’t do, as I had a severe reaction the last time I had been given penicillin— projectile vomiting and had diarrhoea at the same time, yes it was coming out both ends! I didn’t want to go through that again. After much debate and being fortunate to have a senior doctor walk past who asked the nurse about the noise coming from my cubicle, he rejected the use of penicillin and offered an alternative. My results from the X-ray and CT scan came back all clear, and I felt a lot better once I had the antibiotics. The doctor confirmed it was inflammation in the lungs due to the medication I was on. He discharged me, and I went home the same day.
July 2021 (Part 1) – Come on, England!
I decided to create a will; Dad never wrote one or didn’t tell anyone he had, and it was proving to be a pain in the arse to figure out who was owed and what was owing. I didn’t want my family running around like headless chickens after my death, trying to find where and how my wealth was and how I wanted my children to inherit the lot whilst in the care of their mother.
The confusion Dad had caused by not having a will, and the argument that might arise from it, led us all to agree it was best to leave the money found with Mum. I shared the will and my funeral plans with my little brother, who was kind enough to step up if the worst should happen.
The Euros were in full flow. Little man had asked for an England kit for his soccer camp so he could play alongside Harry Kane one day. England was doing so well, and the kids were very excited about the chances of winning the competition. Every night England played pushed their bedtime later and later; they cheered them on singing the chorus of “3 Lions on a Shirt.” No one knew the rest of the lyrics to the song. By halftime, the children struggled to keep their eyes open, but with one limp fist, they cheered.
Considering how many matches had already been played, you’d have thought that we would have tried to remember the rest of the words to the song, but to be honest, we didn’t think they would go as far as the final. Each game was a respite from the side effects of the chemotherapy, but there were times my vision blurred and my head was pounding. I didn’t let on for the sake of ruining these precious moments with the family.
It was the second round of chemo when a good friend of mine jumped in at the last moment to take me to Spire Hospital. There seemed to be some confusion regarding the travel plans, but I had good people around me ready and willing to help out as much as they could. Offers were plentiful when you were in this condition; unfortunately, there weren’t enough to go around.
I took with me a suitcase including a change of clothes and some PJs so I was as comfortable as could be. But these were not any kind of pyjamas—these were my Dad’s unworn pair of M&S pyjamas; they still had the cardboard sleeve around them. The last time I went in, I wore a pair of joggers, which made it very hot, and a t-shirt, which made it awkward for the line to be attached to the catheter port. The buttoned pyjamas made it a lot easier for the nurses to get to the tubes and lay comfortable and cool enough to relax in the bed. The nurse took a liking to my suitcase. I told her that it was on offer at Costco—a manager’s special. Every time she visited, she took the suitcase for a stroll around the room; it seemed to get more attention than I did.
From the first session, I learned that the first cycle of chemo gave me lots of energy, so this period was best used to read, talk to the family, and be creative. I also thought to educate myself on money, an area I’d never been good at. I Will Teach You to Be Rich, Second Edition by Ramit Sethi, was a fantastic book. It talked about the 50/20/30 principle: 50% of your income should be for your rent and bills, essentials (fixed); 20% for saving and investments; and 30% guilt-free money to spend as you like. It also talked about how to diversify your portfolio, but this wasn’t a financial blog—best you pick up the book yourself if you’re interested.
I created a spreadsheet to help make sense of my current finances and my future finances, and I added a home to my vision board. It helped me stay positive and look forward to the future. The second cycle made me feel drowsy and nauseous, with hot flushes and dehydration, so it was best to get some sleep or watch a movie—things that did not consume much energy or require much focus. I dared not close my eyes fully because of the attention my suitcase had been receiving; it could easily have been taken from me. Remember, if you are in my unfortunate position, make the room a home away from home; you’re going to be there a while.
The session passed by smoothly without any real issues, and the diffuser was attached, and I was sent on my way. A cousin of mine picked me up—someone I hadn’t spoken to in years, someone I idolised growing up. We talked about the past with great fondness—how we grew up with each other’s family visiting every weekend, how his Dad became a second Dad to me and vice versa, how we played cricket in the park and rode back and forth from Welwyn Garden to St Albans. Good times, great times! I also reached out to my sister-in-law. I hadn’t built a meaningful relationship with her, a mistake on my part. I reached out in the hope she would give me time and that it wasn’t too late to have her call me her brother. She was kind enough to allow me to speak with her regularly and became a great friend when I was lying there in need of light conversation and entertainment. Bean.
On July 13th, 2021, two days after the devastating result of the final of Euro 2021, I was woken up by a cramping pain in my leg. My chest was pounding again, and the veins in my right leg and foot had turned black. We called the cancer nurses, who asked that I come in immediately. As we made our way to the hospital, my head felt like it was in a vice, slowly turning and squeezing, creating pressure and adding to the agonising pain I was already in. We arrived at the hospital and skipped the pleasantries. I was lofted straight onto the bed. My legs and feet were exposed, and the nurses were pushing down onto my veins. They believed it to be serpentine hyperpigmentation, common with the type of drug that I was on, and it would eventually fade over time.
The cramps were dealt with by a line of fluids, and I was sent for a CT scan regarding the head and chest pains. I remained in bed waiting for the results of the scan. In the meantime, the blood that was taken the Friday before had come back to show that my white cell count was zero and my calcium levels were low. I was given a booster injection for both and monitored the rest of the day. My vitals improved, and the pains were not as intense as they were before. I was told to go home and recover there, and if I experienced any further pains, to call 111 for advice and instruction.
My next chemotherapy was cancelled due to the condition I was in, as well as the blood results. My dietitian called to offer me Aymes, a milkshake filled with all the nutrition you need whilst on chemotherapy or recovering after surgery. They help keep your energy levels up and taste very good too. I would recommend having them on prescription as soon as you start your chemotherapy. It’s also worth noting that if you are a cancer patient or know someone who is, they are exempt from paying for their prescriptions—something I found out later after spending almost £100 on prescriptions. You’ll need to fill out a form that you can get from your GP. Why they do not tell you this, I do not know! She, the dietitian, also told me I was allowed ice cream as a dessert or smoothies and sent me all kinds of recipes, which made me very happy and salivating over the different combinations for morning, noon, and nightly treats.
On July 19th, my condition declined, and I took a turn for the worse. The ambulance was called, and I was rushed to Lister Hospital. And no, it wasn’t the amount of ice cream I’d been consuming!
July 2021 (Part 2) – Eid
It’s Eid day, 20th July, a very important day for Muslims. Eid al Adha follows the completion of the annual Hajj pilgrimage, at the time of Qurbani (sacrifice). The family is very excited, and the kids can’t wait to see their Dhadi (Grandmother), aunts and uncles. ‘It’s the most wonderful time of the year’ is what we would be singing if it weren’t prohibited, as it’s Christmas for us, we cheer, we eat, we exchange presents, and we are all merry.
Our Eid morning would begin with an early start for Eid prayers at the local community centre or school hall, whichever the Islamic society of Welwyn and Hatfield was able to secure. Then we, (mum, dad, brothers and sisters, children), would drive back to our flat where we would have a 2-part breakfast. The first; is a continental breakfast with croissants and cream pastries, fruit, toast, coffee and the second; is a full English breakfast with poached eggs, turkey bacon, beef sausages, the works! We’d conduct a buffet-style service so everyone could help themselves and as much as they like. It became a tradition when we first moved into the flats at Layton Street. Later in the day, we would have Pakistani food at mums such as biryani with tandoori chicken, chapli kebabs, samosa and curry, followed by a really sweet dessert-like rasmalai and halwa, it would be a feast that would fill you up for the next 3 days.
Dad loved breakfast on Eid; he looked forward to it all year!
However, 2021 was a year I got out of morning prayer and missed out on all the food and festivities. The night before I became very ill and the ambulance was called; I had a fever and became delirious. I was panicking because I was having difficulty breathing. The ambulance didn’t hesitate when they came through to look at me, and said they would need to take me in. I was blue-lit and back in Lister Hospital inside a pod to protect me, as I was considered high risk.
The Doctors thought I had a chest infection, they carried out the routine blood work and sent me off for an x-ray and a CT scan, they then transferred to AMU (Acute medical unit) and kept me there for 24 hours as my CRP level was at 276. I needed oxygen fed to me as the pain in my chest was becoming worse and the X-rays and CT scan showed that I had, what appeared to be, a dark cloud over my lungs.
As the Doctors came up with a plan of action my partner came to see me and dropped off some of the food that was cooked for Eid day, she kept me company as I ate it. We did the usual chatter of “how are the kids?” and “what have the Doctors said, so far?”. She showed me pictures of the kids dressed up, and the enormous breakfast spread out across the extended dining table. You could see the sausages were wobbling as someone had nicked one before the picture had been taken, she blamed the kids, but I’ve known her for over 14 years now so there’s no getting away from it, bless her but I let her have it as I do every year.
I was still being supported by oxygen, at least 40%, so I ate the food at a snail’s pace. I insisted on the other half helping me before the food went cold, I knew she hadn’t eaten and rushed to get here to see me, she’s a martyr putting everyone before herself something I lost sight of in the previous years.
The Ward Doctor came through while she was there to say they’ll be moving me to 11 A North, I had what is called Staph infection (Staphylococcal) and would need antibiotics to help clear the infection. We gathered my belonging and away I went with a Porter who used me as a go-kart swinging round the bends and crunching doorways as we made our way to the ward, I was glad to get there in one piece!
Staphylococcal infection, commonly called staph infection, can live on the healthiest of person and whilst it remains on the surface skin area it’s harmless but if it was to enter the body, which in my case, my lungs, it can prove to be deadly. A staph infection could be caused by merely a cut whilst shaving and those on chemotherapy are highly susceptible to it. The bacteria had caused lacerations to my lung wall and abscesses had started to form within my right lung cavity, pockets of air trapped inside causing shortness of breath, fever, confusion, muscle and joints pain, particularly at the knees as it eats away at your joints. There were concerns of the bacteria damaging the heart valves which could lead to heart failure. Hence why I was given 3 different types of antibiotics which were administered 6 times a day. Due to my penicillin allergy, these were tailored to ensure no allergic reaction.
I’ve not stayed in a ward since my early years of around 7 or 8 years of age, I was admitted to the QE2 Hospital, Welwyn Garden City, when it was a fully pledged hospital at the time, having experienced difficulties breathing where the Doctors suggested I was asthmatic only to find when the Nurse gave me a glass of orange juice my windpipe started to close in and I was breathing with a panic. I can’t remember the remedy, but the conclusion was clear to say no more unconcentrated orange juice in future, we didn’t understand why, whether it was an ingredient within the orange juice, but I stayed well clear of it even now. Apparently, I loved the care so much that I refused to go home and was dragged kicking and screaming over the shoulder of my Dad, LOL but, this was a very different experience.
I was put into isolation as the wards were deemed too dangerous for me to be put among other people since I was a high-risk cancer patient. The infection caused me to become even more delirious and confused, I had no concept of time, I was panicking in the room for no reason other than my mind was playing tricks on me. For example, it felt as if I was left for days without any contact from staff or family, only to be told it was hours at most as my IV lines had to be changed and my wife had just left no more than an hour ago, the more time I spent in isolation the more confused I became but staph infection would do that to you.
The ward was run at an efficient pace, and the staff was stretched very thin, Nurses didn’t have time for small talk and came in to change the IV lines and straight out again. My family struggled to find timeslots to visit me as per the restrictions due to outbreaks of Covid19 only one designated visitor would be allowed in and had to book the times online. The Nurses on the ward would tell my family that if the slots had disappeared it meant that no one could come in but the online booking service did not have any future slots and so we had to get in touch with PALS (The Patient Advice and Liaison Service) to raise our complaint.
PALS were amazing. They confirmed that it should be 1 slot allocated to each bed in the ward, so who was booking ours?! They looked at the booking service and said there was something wrong as they too couldn’t see any future slots for my bed number but could see slots for all the beds in the communal areas of the ward. With the help of Macmillan Nurses, they allowed my partner to visit without the need for booking online as there was an apparent error on the system, she would need to call ahead and had to adhere to the rules of visiting, she would only be allowed up to 1-hour and only at the given times.
My partner did her best to visit every day, she didn’t drive so had to get 2 buses and arrange childcare, her friends would help and so would my little sister with transport and childcare. The hour flew by, and I was left all alone for the rest of the 23 hours. I called MacMillian Cancer Support at times when I was feeling very low. They operated from the ground floor at Lister, who was kind enough to lend an ear, but grew concerned with the gibberish I was talking. I told a Nurse at the desk I was going out of my mind and needed to talk to someone to just have a conversation he told me it would take 48 hours for someone to come and talk to me.
Fortunately, a Filipino Nurse had overheard the conversation and saw the dumbfounded look on my face. She said they can organise a member of the Parish to come and see me and she was kind enough to sit with me to talk after her shift. We spoke about our families and trips down memory lane. Her family were all living in the Philippines, she had travelled alone and worked as a Nurse in Abu Dhabi, where she was paid a tremendous amount of money (with the favourable tax rules). Being a Nurse, in Abu Dhabi, was regarded in high esteem and in high demand but she travelled to the UK after 3 years as she found the rule was too strict and didn’t enjoy any of the past time pleasures as much as she hoped to.
She came and lived in the UK with friends she met in the middle east, but many of the qualifications she gained in the middle and far east are not acknowledged here. Take for example my portacath, she could use the port to administer antibiotics rather than stabbing my arms looking for an adequate vein. My veins in my arms had collapsed over time due to being poked and pricked so often, and they would need to find somewhere else to attach another temporary catheter. Why the UK doesn’t acknowledge the overseas qualification and work experience I do not know.
The Macmillan Nurses were a Godsend. They came as a pair and they had a swagger about them, a sense of pride of being Macmillan Nurses. They needed no introduction to the other staff and came and went as they pleased. They came to see if the portacath was the reason for the infection and took samples from it to be tested, they did the whole ‘you’re so young!’ but I didn’t mind, I just raised my eyebrows and laughed about it. They also questioned why the portacath wasn’t used to deliver the antibiotics, but there wasn’t anyone trained to do so or at least certificated within the UK. They asked how I was and I just bawled my eyes out. I was so weak and exhausted, the infection was taking a toll on me and the antibiotics hadn’t kicked in yet. They both gave me a huge hug and comforted me, they waited and I said everything that was on my mind, and they sat there listening and caring they were simply amazing. They also spoke to the ward about the lack of availability of slot for my bed.
Imam Rizwaan came to visit from the hospital’s Chaplin Service. The service is part of spiritual counselling service, even if you aren’t religious, they’re there to have a chat, which I was in desperate need of. He started the conversation about his green Toyota, he seemed proud of the number of miles he had accumulated driving from north London to Stevenage, and he also worked at Mount Vernon where he met Dr Harrison, my Oncologist. It’s a small world after all. He went on to tell me about his love for food and how expensive it is outside of London. He planned a tour of North where he would visit Family in Oldham and journey across Greater Manchester and parts of Yorkshire on a foodie trip with various restaurants he wanted to dine in with his family. The conversation went back to his beloved Toyota and then his time was up. “Wait…. What?! Time was up?”. I thought this was my counselling session not his publication of his version of The Ground Tour meets Man Vs Food. I haven’t said a word. Anyway, it was nice to speak to someone, laugh and forget about what was going on inside of me. He said he would keep me in his prayers and ask the other Parish members to come and visit when he’s not here on his grand tour.
By the time he left, it was my turn to salivate over the favourite meal of the week, a cheesy omelette and a chocolate eclair. The hospital wasn’t that bad it reminded me of the school dinners; it was fish Friday and a chocolate sponge on a Tuesday with the skin on the custard. Delicious! My mother insisted on cooking for me constantly asking what I wanted to eat but by the time it arrived the food had gone cold and there wasn’t a microwave insight, and it would go to waste. The Nurses would often weigh me and by the time I was out of the hospital, I had lost over a stone. I opened my book, Doctors Get Cancer Too, and the next page is about being in A&E alone and terrified, needing and wanting family after a few days it settles.
My mood would be like a rollercoaster; the infection, the isolation and the amount of time I had alone thinking, talking to myself looking out the window. My head was in a dark place with thoughts of stepping on the balcony and ending my suffering. But it was the thought of my family that kept me from falling over the edge even if it was only in my mind. I missed my kids; I hadn’t seen them for 9 days which felt an eternity especially as I haven’t spent more than 48 hours away from them since the day they were born. My partner noticed the change in my mental health and negotiated with the Doctors to wheel me out to the communal quadrant outside. I wasn’t well enough before to be taken from the room, seeing them gave me the strength to carry on, get better and get back on track with the chemotherapy. It would be 6 more days before I could go home.
The more time I spent in the hospital fighting off infections, the less time I would have fighting the cancer. It was the lesser of evils I had to constantly battle with during my time with cancer, not just this bout but many more to come.
August 2021 – Discharged on bail
On August 3rd, after 15 days in the hospital, I was finally well enough to be discharged, but with one condition: I would need to continue my treatment through the QE2 Hospital in Welwyn Garden City. This meant I would need to visit the Ambulatory Care Centre (ACC) every day, as the antibiotics I required could only be administered through IV.
I saw Imam Rizwaan once more; for two hours, we sat, talked, and laughed, and I finally got a word in this time. He told me that he had visited my father while he was in the COVID ward. He spoke about seeing my little brother and praying over Dad when he passed away; he also knew my little sister, who worked in the lab’s downstairs. It really was a small world. When all my bags were packed and I was on my way downstairs, I felt very anxious as the doctors had promised to send me home on two or more occasions, but at the last minute, they would spot something from an earlier scan or blood result that would suck me back into isolation like a Henry vacuum cleaner. I saw the blue of my Honda Jazz and ran toward it. “Run, Forest, run!” my family laughed at the sight of me running, although it was more like a waddling penguin.
When I arrived home, there were banners on the front door saying “Welcome Home.” I walked into the living room to find more decorations, a party with the whole family, and presents. “I should go to hospital more often,” I told myself (famous last words). It was a lovely touch by the family.
The next day, I visited the ACC department at the QE2 Hospital. I was still very weak from the staph infection and needed to be wheeled up to the first floor. The nurses asked me to take a seat inside the mini ward, and as I stood, I quickly went down again. I had a dizzy spell, so they kindly allowed me onto one of the very few beds available. My wife and I were given tea and biscuits—the perks! I met a wonderful doctor, Dr. McGuinness, who decided straight away that I was too poorly to be coming to the hospital every day and arranged for the community nurses to visit me at home.
The community nurses were amazing. It was a different nurse every day, and each of them came with a different conversation—from religion and sports to travelling around the world. By the end of the week, I was feeling a lot better and was on my feet a lot more. The last appointment came and went so quickly, and all I needed to do was wait for the blood results, which were taken at the end of the week. I was having tea with my mum and little sister, who came round to visit, when the phone rang. It was Dr. McGuinness. She said the blood culture results had come back and showed that I had an infection. She went on to say I needed to admit myself into hospital, Lister, right away.
My head didn’t leave staring at the floor. I was so upset about having to go back in. I felt so good, so much better than I had felt since leaving the hospital, and ten days later, I would have to go back in. My bags hadn’t been unpacked long enough for them to be repacked, and my sister drove me to Lister Hospital. I was moved to 10A North on a bed within a communal area. I was lying on a bed surrounded by people—people make such a difference! At first, I suspected the doctors hadn’t read my notes as I wasn’t in isolation, but I didn’t mention it as the effects the previous stint had on me still lingered in my mind. I looked around to gather my bearings. To my right was the nurses’ desk, and in front of me was a man who was talking to himself, looking very frail. His name was John. He reminded me of myself during my time fighting the staph infection. His ex-wife visited him every day. She was a sweet old lady and had to catch two buses to get there. We talked quite often, as John would doze off on occasions during her visit—not because the company was bad but because of how unwell he was.
To my left, I saw a very old man with his wrinkly backside hanging out of his hospital gown—eww! In front of him was a very large man called Paul, who was loud and a proud Chelsea fan. I didn’t know what was worse to look at—a Chelsea shirt or a wrinkly backside. I went for the man who was talking to himself. Paul suffered from seizures and was admitted to the hospital after his daughter found him coming home after work, on the bathroom floor with blood pouring from his head where he had hit the bathroom sink. He also had pins and screws put into his feet, which were poking out, pushing up into his skin from a previous injury. His entire family, bar one—his son—worked for Tesco. I didn’t see any of his family come in, but he was always on the phone to one of his six children or his wife.
The man with his backside hanging out woke up and turned toward me, and we introduced ourselves to one another. His name was Lesley. He was 95 years old, but you wouldn’t have known it because he looked and acted so much younger. He was a hit with the nurses as he was so witty and full of compliments. He and I bonded very quickly. He had a number of health issues, including kidney failure, and his feet were retaining a lot of water. He would tell me stories from when he was my age, living in North London, working for the Post Office in Hertfordshire, and his daughter lived close by. He’d been married twice. His first wife cheated on him and left him for someone else. He went on to remarry and have a daughter. Sadly, his second wife passed away.
His daughter convinced him to move from his flat in North London to a retirement home closer to her, but he hated it. He felt as if he didn’t fit in. She also bought him a new phone, but the pair of them didn’t know how to use it. I managed to get him onto the hospital’s Wi-Fi so he could catch up with the news on the BBC app. We encouraged one another when we felt low or when we were told we could go home and then, at the last minute, were told to stay because there was some anomaly with our blood work or a scan.
The staff in 10A were amazing! As there were four of us patients, it was easy to get to know everyone and vice versa. Lesley and I wouldn’t give up the chance to speak to them and pay compliments to them too. They knew that we were only playing, and they helped pass the time. There were many students too who loved being on the ward as they could easily complete all their objectives for their coursework and still had time to have a joke and laugh. There were times when we were told off by Dr. Barlow for making too much noise. We were like little school kids—lads just having fun and making the most of the rotten reasons we were there.
Dr. Barlow kept me well informed of the various scans and tests they had planned for me. It was a case of waiting, as you would get called at any time to be taken away for various reasons—sometimes when you were about to tuck into your favourite pudding, other times when my partner would come to visit after arranging childcare, a train, and two buses. But you can’t help these things, and you learn to be grateful for all the attention. The main issue Dr. Barlow had was my oncologist being on holiday somewhere very hot and without reception, so I was told. And I was told he didn’t care about the infection; his only concern was cancer. I guess that is what Aviva pays him for.
Dr. Barlow decided to act and inform Dr. Harrison of the progress rather than ask for permission, which I totally on board with. Family visits were frequent between all of us except Paul, and the staff were kind enough to allow family members to spend a little more than an hour, provided they were the designated visitor. Lesley and I would share treats brought in by our loved ones, which some nurses frowned upon, but others tucked into without needing to be asked twice. I was well enough to go outside and sit in the warm communal area to see my partner, children, mum, sister, aunts, and uncles. We would watch the children play games on the green, and I would feel the air on my skin.
Paul was the first one to be discharged, and Lesley and I placed bets on each other as to who would be next to go home. John was told he could go home but remained in his bed for a further four days as there were complications regarding his travel. The hospital transport would cancel on him almost every day, but eventually, his son came to collect him. Before I could leave, I had to have the portacath removed as there was a strong suggestion that it was the source of the infection, but it turned out it wasn’t the cause. The antibiotics had done the trick, and I was ready to go home ahead of Lesley, but Dr. Barlow was still concerned as the last X-ray showed a dark cloud over my lungs. Dr. Barlow wanted to experiment to see how I would react to coming off the antibiotics.
There was also concern about the tumour, which was growing according to the latest CT scan, so there was a desperate need to get back on chemotherapy. My CRP levels were good and had been for the last four days, and the doctors were happy for me to go home. On August 26th, it had been 14 days since I first arrived on the ward, and I finally got to go home—a day ahead of Lesley. I said my goodbyes with loads of treats for the nurses and for Lesley. I found a friend on ward 10—a wrinkly old backside—and we exchanged numbers to carry on that friendship.
When I got home, the banners were still up, and it felt like Dorothy in Kansas. On the morning of August 27th, I woke up with a fever. My chest was in pain, I was delirious, and so my wife called 111, who put her through to our GP practice where a doctor came out to see me. She took my vitals and called for an ambulance. I was given 30 ml of Oramorph (liquid morphine) without any effect. She left to go back to her practice and said she would call through to the ward so I would not have to wait in A&E. The ambulance arrived shortly after she left, and as they carried me downstairs, they had the doctor on loudspeaker asking whether she had been able to get through to the ward. As the ambulance took off, the GP said she hadn’t been able to get through to the ward and said she was annoyed with the ward. She called me a “dying patient.” August/September 2021 – Back again
I was moved from AMU to 10A North. The staff were sad to see me back, and each of them asked me, “What happened? You were doing so well! What went wrong?” As the shifts changed, the same questions were asked over and over again. I felt a sense of guilt and embarrassment to have to come back so soon after I had said my goodbyes to the staff and to Les. The banter wasn’t the same; I missed my Les.
Most of the patients slept throughout the day and screamed during the night. The knee pains were the cause of the staph infection. It was common for the disease to eat away at the joints. Fluid had built up around and behind the kneecap, which felt like it was about to pop off. The doctors drained the joint and prescribed an ibuprofen gel to be applied when required. They also brought back the antibiotics to fight off the infection.
Google sent reminders of the past—of a time lying on a beach with family, a time when I had a full head of hair and was in good health, a time which I could not quite remember all that happened, but I knew I was happy and well. Warm memories melted the heart, a smile radiated warm air, a stroke of the head—and oh no, it was almost gone! Oh well, it was a fond memory.
Dr. Barlow was concerned that the cause of the infection was the tumour, as all the blood work carried a distinct marker of the bowel and stomach. The tumour had perforated my bowel and was spewing toxins into my bloodstream, causing me to become unwell so often. The antibiotics worked and fought off the infection, but they could not put a bandage over an internal wound, so I was caught up in this vicious cycle of fighting off the infection with antibiotics, feeling better, and then falling ill again.
Dr. Harrison, my oncologist, wanted me to be admitted to Watford General Hospital, but it would have meant that I discharged myself from Lister and made my own way to Watford. I asked Dr. Barlow why I could not stay at Lister Hospital. “Was the care no better than Watford General?”, “Did they have better doctors?”, ”Better nurses?” “Superior medicine?”, “Greater surgeons or expertise?”, “Why Watford General?”. I did this to agitate Dr. Barlow, to make her feel as if Lister Hospital was being belittled and for her to take ownership of my care. I was in no condition to be dragged across the county only so my private medical insurance pockets could be emptied—at least that was how I felt at the time. It seemed to have worked, as Dr. Barlow escalated my case to the Disciplinary Committee. She argued my illness would be better served here and that I was not well enough to travel.
The committee agreed and suggested that I discharge myself from the care of Dr. Harrison and Aviva so they could continue without the need to ask his opinion or permission in future for a smoother transition, which I was more than happy to do. Don’t get me wrong, I had nothing against Aviva or Watford General. Aviva had been great and provided me with resources and turnaround times I could only dream of, not to mention a whole room to myself while having chemo. It was merely the case that I felt I was being used as a cash cow and not as a cancer patient.
I had one last call with the cancer nurses at Spire Hospital, Harpenden, who had been so kind and brilliant with my care throughout chemotherapy. My son got a hold of the family group chat and sent a voice note in the early hours of September 12th, “Morning abba (daddy).”
I found out later that he and his sister had also kept themselves up to date with the group chat by ‘borrowing’ their grandma’s phone. They knew all our PINs on all our phones and had been secretly reading the messages being sent from everyone. They were a resourceful pair and had been confiding in one another. Their mum spoke about them talking to each other during the night, but she couldn’t make out what they were saying. They later mentioned they were talking about me and what they read in the group chat.
I assigned my care officially to Dr. Barlow, and the wheels started to spin a lot quicker. The age-old saying of ‘too many chefs’ came to mind. She told me that she is desperately trying to arrange my surgery; there was no other alternative, and we needed to break this cycle. A plan was being devised among the Disciplinary Committee, and they were confident that even with the complications of the tumour, mentioned earlier in the journey, they could remove the tumour. I was discharged from Lister Hospital for a short while so that they could organise the surgery. I was given priority but considering that the whole world was in crisis with COVID and the NHS was at a standstill fighting this awful disease, many patients’ surgeries were put on hold.
Priority didn’t necessarily mean anytime soon. On September 26th, my wife and I were dropped off to meet the surgeon and colorectal clinician nurse to discuss the surgery. We squeezed into a small room where he explained that my tumour was now the size of a grapefruit, pushing up into the other organs, squashing my stomach, and squeezing my lungs, making it hard to breathe normally.
My wife was scared and asked, “What happens if, during surgery, they find the tumour is still attached to the surrounding tissue?” He replied, “We will do what we can.” For the next seven days, I was to meet with a range of different people before surgery, each playing a significant role from pre-ops to aftercare. While we waited, my condition started to worsen (I know, oh not again), and guess what?! Six hours after meeting the surgeon…I was back in the hospital! (Who writes this!) Seventeen hours later, I was rushed in for emergency surgery.
October 2021 – Casualty
I was wheeled towards the operating theatre. My partner made it just in time to see me go in. I was given an epidural, an injection in the spine to stop me from feeling pain, then taken into the theatre room to undergo a Hartmann’s Procedure, which removed the diseased part of the large bowel and redirected it to the surface area of the tummy as a stoma (colostomy). I had 52 metal stitches from my navel up to my chest. The family was all waiting anxiously for any news of how the surgery went and my condition. The surgery was meant to take up to 4 hours; however, it took over 7 hours (as to why, has not been explained to me or my family). They called every day asking to speak to someone who could give them an update. They were told that I was out of theatre, but that was all the nurses could tell them; more news would be given by the surgeon.
Finally, on October 2nd, news came that I was in ICU because I had been “critically ill”. The tumour had grown to the size of a small watermelon; previous scans did not show the full scale, and had they not done the surgery then and there, I would not be alive today. My oxygen levels were very low, and I was in a lot of pain. My heart rate had spiked several times after the surgery, and I had to be brought back into theatre in case I went into cardiac arrest. My whole body looked swollen, retaining water, three times my normal size. I was hallucinating; someone kept leaving their empty pizza boxes on my table, and the nurses were doing nothing to find the culprit (apparently). But I was making progress—albeit slow progress, but progress, nonetheless. Over the course of the next couple of days and weeks, my heart rate reduced as well as my pain. The medication they gave me kept me comfortable, and my stomach was working. However, my oxygen levels remained low.
I was diagnosed with dyspnoea, which was described as an intense tightening in the chest, air hunger, difficulty breathing, breathlessness—often a feeling of suffocation combined with pleuritic chest pain, where the thin layers of tissue that separate your lungs from your chest wall become inflamed. After conducting numerous tests and scans, it appeared I also had pseudomonas aeruginosa pneumonia. I was transferred to a ward and put in isolation. I was blacklisted, which would have meant that I had COVID, but two tests proved that I didn’t. However, the doctors requested that I be given the same level of care and protection as those who had COVID due to my pneumonia.
I had three tubes attached to my neck on the right-hand side: one for food (parenteral nutrition), fluids, and another for antibiotics. An NG tube was inserted through my nose and threaded to my stomach to stop me from vomiting. I also experienced a tingling sensation in both my feet and hands. All the while, I was having the time of my life high on painkillers, and the hallucinations were getting more and more intense. I was shopping in Costco, roaming the aisles checking out all the Kirkland’s own organic produce, but I still had enough sense to let the nurses know my urinary catheter was irritating me. It turned out I was allergic to latex! Of all the times my hands itched from wearing Marigolds, I could have gotten out of doing the washing up.
By the end of the month, I was much more alert and was having physio to help me get back on my feet. The pins and needles were getting worse, but that was brushed aside as I contracted two stomach infections at the same time. The first infection had to be drained from the side of my stomach. The hospital was so short of theatres that I had my surgery in an X-ray room. The second was treated by removing the staples underneath my belly button, and a special gauze was left soaking up the infection. It left a permanent scar, causing my belly to go visibly inwards from the bottom of my abdomen towards my belly button. Speaking of stitches, they had been left in for too long, and my skin had started forming around and over them, so removing them one by one was very painful. Still, it was the least of it, and I was making progress day by day, week by week.
November 2021 – Stoma
My stoma was working well, and I was getting the hang of changing it. It felt weird having to carry around a bag full of waste wherever I went, as I had no control over my bowel movements. The occasional fart escaped while the consultant came to visit. I had no control and could only apologise. Still, it was keeping me alive, and changing it was similar to changing a baby’s nappy. And yes, like nappies, stoma bags would occasionally blow and burst.
After all this time of being in isolation, including times when I was on the 11th floor months ago, I was getting used to it and making the most of it. Actually, the thought of being on the ward scared me a little. My social skills weren’t what they used to be, my confidence was shattered, I could barely recognise myself. My face, arms, and legs were swollen, my hair was falling out, my beard was patchy, and my skin was grey. Who was this man?! The thought of meeting new people outside my bubble made me anxious. I suppose when you are used to seeing the same people day in and day out for an extended period, closed off from the rest of the world, it can be quite daunting to even think of going out. Even now, as I was writing this, I was at home in a flat three floors up, unable to climb stairs due to nerve damage in my right leg.
Sitting and waiting as Rapunzel did in her tower—that’s why I called it Rapunzel syndrome. My only means of getting outside were for the NHS transport service to carry me down in an evac chair for my appointments; otherwise, I was there looking down from my window as the rest of the world carried on with its day. More on this later.
The surgeon came to visit me and said he was pleased with the progress I’d made. He thought it would be best to discharge me and have me sent to a rehabilitation centre in Bishop’s Stortford to continue my recovery. I asked him, “what about the pains in my leg?”
“You’ll be able to walk off the tingling in your feet,” as he so condescendingly put it.
He put it down to an a effect of the cancer treatment, but with physio, I should be able to make a quick recovery. He left, saying he would be arranging my discharge letter, etc.
Later that day, I was visited by physio, and I asked for their opinion on the issues with my feet and legs. Cautiously, he guessed it could be sciatica due to the lengthy time I’d been on my back and off my feet. I called the cancer nurses for their opinion, and they said it could be due to the surgery. As the tumour was larger than expected, it could have meant the surgeons had to cut away at the surrounding tissue and nerves to remove the tumour. Nonetheless, it seemed the rehab centre was making the same enquiries too, as there appeared to be some questions that had not been properly answered.
While it had been some time since the surgeon said I would be shipped on to rehab, I was told there appeared to be a bit of a standoff between the hospital and the rehab centre. According to my consultant, who visited me later in the week, the rehab centre said they would not take me until the issue with my legs had been diagnosed properly and a plan of action had been written up. The hospital said it was “phantom pain”—pain that did not exist but felt very real—and that it would mend whilst in rehabilitation. I sided with the rehab centre because it made sense, as the pains were getting worse, and I was confident it was not in my head.
I didn’t want to be moved because of my anxiety about having to meet new people, and on top of that, my ward was in total lockdown, so I hadn’t had any visitors from loved ones for two weeks. It took some convincing, but the rehab centre, Herts and Essex Community Hospital, Bishop’s Stortford, finally decided to have me. However, when I arrived, they were annoyed as they seemed to have been misled about how severe my pains were. The whole point of the rehab centre was to get me back on my feet through expert physio and dietitians. What they actually did was constantly change my medication to help control the nerve pain as it got progressively worse over time. There were talks of moving me back to Lister Hospital, but those talks broke down quickly.
The care at Herts and Essex Community Hospital was amazing. The nurses took a real interest in me and asked me about myself. They learned that I had two children who meant the world to me. I hadn’t seen them since before the surgery. Over six weeks had passed without any physical contact, but I had my tablet, and we met over WhatsApp every night. The ward manager heard of this and said it was important that I saw my children for my rehabilitation and allowed them to visit one at a time. As I had a room to myself, the rules were a little relaxed, and they would stay for a little over an hour, two hours, and then the nurse had to ask them to leave. My mum would come and visit too with my little sister. Unfortunately, they were not allowed in as I had a designated visitor—my partner—so they waved outside the window, and we spoke over the phone while they were there. I was a floor up, so they had to stretch their necks to see me, but where there is a will, there is a way.
I had a huge room to myself, and the rooms around me were vacant, meaning the nurses were not rushing around. But there were things that needed doing, so they kept themselves busy. One of the nurses was kind enough to get me some halal produce for my dinners from ASDA. My room was also opposite the ward manager’s office with the door wide open, so if I was in any pain, they would hear me and come racing out to see me and offer me pain relief. I could hear all the gossip—what’s a man to do with all this time?! On my first week there, I sat on my chair eating rhubarb and custard while watching the Champions League in complete silence. Oh, the good life. I felt like the cat that got the cream. But it didn’t last!
After the night staff did their rounds, my temperature rose above 38 degrees Celsius, and I started to appear feverish. I felt fine, but that could have been the amount of painkillers coursing through my body. In the morning, the doctors decided to send me to the nearest hospital as soon as possible—before breakfast! They sent me to Princess Alexandra Hospital, Harlow, which seemed strange as all my records were at Lister Hospital. This was a completely new and different experience. I was shoved into a room that could only be described as a cramped janitor’s closet with barely enough space for a bed. There were no windows, and a stench of vomit and antiseptic filled the room. As a nurse came in to attach a catheter, I asked for some painkillers, to which she replied, “I cannot give you any as the doctor would need to see you first.” I asked when that would be, and her reply came as she was exiting, with the door shutting behind her: “Whenever he can be bothered.”.
Hours later, I was still without any of my daily medication or pain relief and still no doctor. But the same nurse did come back and gave me paracetamol. I asked if there was anything to eat as I had missed out on my scrambled eggs and strong coffee before being carted here. It was almost lunchtime according to my mobile, which had no signal and no Wi-Fi either. She responded, “This isn’t a hospital ward, where am I supposed to get you food from?!” I said nothing, swallowed the paracetamol, and returned the cup to her. I sighed; my stomach rumbled, my stoma farted, and as she walked out closing the door behind her, she said, “Don’t swear at me under your breath.” Before the door shut, I shouted, “DON’T YOU DARE ACCUSE ME OF SWEARING!” A fit of rage came over me as the shadow of the door grew larger. I shouted again, “HOW DARE YOU ACCUSE ME OF DOING SUCH A THING!”.
For those of you who don’t know me, I don’t swear ever. I’m like the Ned Flanders of Welwyn Garden City. It’s very rare to catch me swearing unless I catch my toe on the table or someone cuts me up at the roundabout (Darren!), but that doesn’t count as it’s in the car. Hours passed by, and while I repositioned my mobile for the eighteen hundredth time to get a signal from my bed, I finally found one pressing onto the outer wall. I called my wife and explained through my tears what had happened. I’d been shouting for help while I lay in bed struggling to move because of the pain I was in. Normally, for pain relief, I would have:
2x 500mg paracetamols
2x 600mg gabapentin
30mg MST
10 additional milligrams of liquid Oramorph
By this point, I would have had at least two servings of most of the medication. Here I was, six hours in with 2x 500mg paracetamols, rolling around in pain with no way of signalling for help except to shout and scream in the hope that someone passing by would hear my cries. I asked her to call the desk and have someone come in to help me. When they did arrive, I was given a second dose of 2x 500mg paracetamols and still no doctor. I gave up trying to ask for pain relief; I thought I would be stuck in there forever. I remained in silence, weathering the pain, and then came my knights in shining armour—the NHS Transport service.
They asked me how I was, and I spilled over with emotion and snot, crying. I was inconsolable. All I wanted was to get out of Harlow and back to my comfort of rehab centre and some rhubarb crumble. My brother had heard of my condition, and he called the site manager who met me as I was being lifted into the ambulance. She was lovely and very apologetic. She was going to investigate what happened and why a doctor was not able to see me and explained they had been very short-staffed and very busy. All of which I appreciated. I know all too well how difficult it is for the frontline staff of the NHS, as they had looked after me for many months. Nevertheless, I was well looked after on the way back to rehab, and I was so glad to be in the care of the nurses at rehab once again.
The behaviour at Princess Alexandra Hospital, Harlow emphasised the shortages within the NHS and the tremendous pressure they are under to help so many people with all kinds of illnesses and demands. It also shone a light on the amazing staff at Herts and Essex Community Hospital and Ward 10 at Lister Hospital, as the reason someone would ever work in the NHS is for the love of caring for others and wanting to help those in need, which I am truly thankful for.
November/December 2021 – Whatsapp
The WhatsApp group chat ‘Samad’s Road to Recovery’ was being hijacked with conversations about anything and everything; however, this was the only means for the family to communicate with everyone all at once. It was time we rekindled the ‘Family Chat’ to discuss all things unrelated to my recovery. We had this long ago, but people would yoyo in and out of it, and then it just fizzled out completely. Families—you can’t live with them, and you can’t live without them. Honestly, though, I didn’t know what I would do without my family.
I mentioned before that I had neglected them for so long that my brothers and sisters became strangers. I didn’t make much of an effort because I didn’t think they would understand where I was coming from, and some of the decisions I took of late, before my diagnosis, would cause them hurt and anguish. In fact, most of my adult life caused a lot of shame on my family, but it was my life, and I wanted to live it my way without anyone’s permission, without any regret. Although, most of what I did was a cry for help. I didn’t know how to deal with my problems. But my biggest regret was pushing them away, concealing my true ambitions from them and the truths about who I was, who I am, and who I want to be. Because I thought they wouldn’t support me or understand.
What I found was a loving, deeply caring, and forgiving family who supported me throughout my fight with cancer and beyond. There’s a quote from a book I had been reading since coming out from the hospital. It’s called ‘The Book of Joy,’ a conversational piece between the Dalai Lama and Desmond Tutu:
“Suffering can either embitter us or ennoble us, and that the difference lies in whether we are able to find meaning in our suffering. Without meaning, when suffering seems senseless, we can easily become embittered.”
The meaning I found was family, and I’m glad to have suffered to have finally seen that all I ever needed or wanted was right in front of me—family. That includes Mumma Lesley, one of my first subscribers and my fairy godmother. I was working with the physio to try and get myself back on my feet. I was pushing myself too hard, causing injury to an already broken body. Even now, I couldn’t fathom what my body had been through. Each time I thought about it, my mind shut down and rebooted in MS-DOS mode. I was being reckless, and the physio knew it. All I wanted to do then was go home. I spent most nights beating myself up as to why I wasn’t able to make the progress I needed and wanted to so I could get out of there. It all seemed pointless as I was taking more and more painkillers with every session.
Finally, on November 27th, I was being discharged! I could go home! I told the family, and my brother thought I was joking. I raced to pack my bags and was ready to leave as soon as the NHS transport arrived. I had heard those words before and been let down many times, as something always popped up to hold me back. But this time it was for real. I took a video of me leaving, driving off in the back of an ambulance, as confirmation of my coming home. First, we drove to Hitchin to drop off another elderly patient, and then we were on our way, driving down the motorway to head home. I sat at the back of the ambulance in silence, peering outside the window to look for anything familiar as a marker of how close we were to the flats of Layton Street. We pulled up to the Hatfield roundabout, and then I saw the big Tesco’s, and I could hardly contain myself. I was acting all cool in the back but inside I was bubbling with the excitement of seeing my wife and kids, my brothers and sister, and my mum.
We pulled into the car park, and the driver and his colleagues left the van, and then there was nothing, as if they’d forgotten about me—they’d disappeared. I undid my seatbelt so I could look outside to see where they were, and I couldn’t see anyone. I was confused as to whether something had happened, and I was left sitting there until they came back. I actually thought I was dreaming and about to be awakened. Finally, the driver pulled the side door open and told me, “Sorry, we’ve been told to take you back to the hospital.”
My heart sank, my head fell to the ground, and I took a big gulp of air to hold the tears back. How? Why? What’s going on?! As I fastened my seatbelt, the driver said, “Only joking! Ahhhh, I had you, didn’t I? No, all we needed to do was check the stairs to see how best to get you up there, that’s all.”
I nodded and played along, signalling a pistol sign with my hands and a false laugh indicating ‘hahaha yeah you got me’—you wan*er!’ I mean, what sort of joke is that?! But the joke was on them. You see, I couldn’t walk. I’d been given a zimmer frame to help me get around, and I sure as hell couldn’t climb stairs, so they had to carry me in an evac chair up three flights of stairs. With all the rhubarb and crumble and little to no exercise, I was much heavier than I was when I first went into the hospital. Who’s laughing now? Sucker!
As they struggled to get me all the way up, they finally put me down in my living room, next to the sofa. They were sweating and panting and barely able to say goodbye as they left through the front door. I was so grateful to be home. I was hugged and kissed and smothered, and I loved it! I curled up underneath my soft fleece blanket. Oh, how I’d missed this blanket. I was bombarded with messages and the kids telling me how much they’d missed me. There were Cadbury’s Flake bars piled up high next to a card to welcome me home and a key ring that had ‘Star Dad’ embossed along the bottom with a star in the middle. Oh, how great it was to be home.
In the next few weeks, I was visited by the community physio to continue my rehabilitation at home. She was lovely and patient and provided me with a bath stand and recommended I use a TENS machine, which helped with nerve pain. It was what Will Smith had. It came with some small sticky pads connected to a remote control where you could adjust the strength of electrical current, disrupt the nerves and trying to get them to behave. It did help a little, but I was still in a lot of pain.
I was also visited by my GP, Dr. Kabuubi, from Springhouse Medical Centre. She was amazing! She looked at all the medication I was on and was disappointed, to say the least, as to what I had been prescribed, and she was perplexed as to when I had been told to take them. For example, I was on antidepressants, which I was given in the morning but were sedatives, so no wonder I’d been sleeping in the morning and had been drowsy during my physio lessons. So, she changed them to be taken at night. Plus, she put me on stronger and cleaner versions of morphine that didn’t upset my stomach or cause me to become nauseous. I was now on the maximum dosage of Gabapentin, which helped with the nerve pain, but I was still in a lot of pain. She was sending referrals left, right, and centre to try and get to the bottom of my nerve pain. Like I said, AMAZING! Alongside my oncologist, she was recommending that the family get tested for bowel cancer as it can be hereditary.
My oncologist, Jackie Hayward, was great. Apparently, we had already met in the past pre-surgery, but I honestly couldn’t remember. We discussed all that was going on with me, and as much as she wanted to get involved, she thought it would be best to draw lines of responsibility. I would be meeting with Jackie every three months for the next five years, having regular scans and blood work to make sure that I was in the clear, and if anything was to come up, she’d be on it before it got out of hand. I may have been back at home, but I wasn’t out of the woods just yet, spending the next five years looking over my shoulder and the possibility of others having to go through what I had—God forbid.
January 2022- Pain in the arse
Every morning was a struggle. As soon as I woke, I was greeted with an electrical charge being sent up from my foot to the bottom of my spine, as if my nervous system was misfiring signals from my foot to my brain, which were being rejected—unable to decrypt what my foot and leg were trying to tell my brain—so the signals were sent back down my leg, causing more frustration as each discharge grew stronger, and my foot and leg shouted louder. My calf cramped, followed by intense, throbbing pain. It was dehydration followed by growing pains and the electrical charge all going off at once. There was a firing and popping sensation on the sole of my foot. I could feel it bubbling along the bridge of my foot. Yet when I looked at it, the skin appeared normal, so why did I feel as if the skin of my foot was set on fire by the fabric of the duvet cover brushing along the skin as I twitched and jerked with pain, trying to conceal my mouth so I didn’t scream and scare my children who were asleep next door? My toes were limp; I couldn’t move them, and I could barely lift my foot as the muscles had fused around my ankle.
As I walked, my right foot dropped; it dragged behind me wherever I went. I was lifted by hugging my wife’s midriff, and she pulled me up to sit on the edge of the bed. As my bottom hit the rim of my mattress, a sharp pain shot from my tailbone all the way up to the cervical vertebrae, forcing my chest to push out and my shoulder blades to squeeze, followed by a loud outpour of pain and distress as my wife brushed her hands across my head with a shushing noise, which brought little comfort but comfort nonetheless. I could barely close my right hand, which was forced open in a claw as it cramped, with pins and needles from the elbow down to my little and adjacent finger. I forced it to close and reached out to the plastic cup on the bedside table filled with medicine to help me get out of bed. The pills were piled high, taking about a quarter of the cup. I took them in one hit and washed them down with a large glass of water. I waited approximately 20 minutes for the painkillers to kick in so I was able to stand and make my way to the living room using the frame the physio had given me.
I also used this time to tap my feet on the floor to try and get the circulation going and the feeling back into my legs so I could stand without losing my footing. All of this, and I hadn’t even had my morning cup of coffee. The funny thing was I was only registering this now, as I wrote it, whereas before I was, for lack of a better word, ‘going through the motions.’ And it wasn’t the pills that I craved most during the mornings; it was the hug, the gentle strokes on my head, someone to tell me ‘it’s okay’ without speaking. The validation that it was alright to show I was in pain. The pills were what I needed to get me going, but the comfort of having someone who cared and gave so much was something I could not do without. The physio visited weekly to try to get me to move and walk independently. It was going badly. I was pushing myself too hard, masking the pain, to make progress for progress’s sake. I was given a walking stick, but I stuck with my frame. I wasn’t looking after myself and was causing more injury, and as soon as the physio left, I dosed myself with painkillers and curled up on the side of the sofa, waiting for the pain signals to relax.
The oncologist called with news on the tests they’d been running on the tumour, and they confirmed that I had Lynch Syndrome. Lynch Syndrome is hereditary, and the chances of other family members having cancer are very high and most likely to be diagnosed at a younger age. It also meant that I was at risk of developing other types of cancer during my lifetime. My oncologist advised me to tell my four siblings and have them tested as soon as possible. Those over 35 years of age should have a colonoscopy booked through their GP, and those under should have their blood taken. Everyone should be screened often to detect it early so it can be treated as soon as possible. It was terrible news, and my brothers and sisters were talking to their GPs about the next steps, but I was relieved too, as the family would be on high alert with their GP practice and not endure all of what I went through during the early months of having cancer and fighting for a blood test to confirm I wasn’t crazy.
I also decided to start a blog about my fight with cancer, but I kept putting it off. I talked it through with my wife, who thought it was a great idea, but I kept asking myself, ‘Who is going to read it?’ ‘Why are people going to read it?’ ‘It’s just me waffling on about what I had to go through.’ Would people see it as a way of promoting myself? That I’m self-indulging, being pretentious over something that others cannot relate to or are not interested in? And, if I’m honest with myself, I was nervous about putting myself out there after being so coy about my illness. No one outside my family and very close friends knew about it. I was out of my comfort zone and out of my depth just thinking about it. Would my style of writing go down well with others? I made so many spelling errors; what if it didn’t make sense? But my wife said if it would help just one person out there dealing with cancer or a loved one who was trying to understand what they were in for, then do it—it would be worth it. And that is why you’re here, and I thank you for reading my blog and cheering me on.
February 2022 – Beating myself up
They say those who have felt Deaths’ touch or been at its door revive with an epiphany—they suddenly know what they are going to do for the rest of their lives. It’s as if God had touched them, and suddenly they are a messiah for a just cause. God’s hand rested on their head, and He said, “Go forth wit,” and poof! They came back to life to fulfil their mission. Meanwhile, I was stuck underneath His boot, waiting for Him to scrape me off and leave me among the living dead.
The pain I had been experiencing was getting worse, and I was beating myself up for being like this. I felt an enormous amount of pressure to get up and live a ‘normal’ everyday life—to help around the house, to walk down some stairs and out that door, and to provide an income worthy of my life goals. I wanted to exercise, run, and be free. The stoma bag was like a shackle preventing me from moving forward, preventing me from even being able to support my family in any way. I never thought I’d become a couch potato. I looked in my wardrobe, and the only things that fit me were my pyjamas and jogging bottoms. I refused to buy any clothes as a statement that I would not accept the way I looked and felt. It was stupid, I know, but I could not find myself to look in the mirror and show any empathy for what I had become. When I looked at social media, I saw brave people with photos of themselves and their stoma in their gym gear, and I couldn’t help but think, why was I not able to stand independently to even take a photo?
My legs wobbled, my right foot arched into a heel to find balance and to restrict the pain of putting the sole of my foot on the floor. I had to plan my route from the bedroom to the living room. What was I going to hold onto to walk through the hall? What would I grab on to if I fell? I knew I should use my frame, but I was stubborn and convinced myself that the pain I was experiencing was a sign that I was getting better. The family was filling in the forms and talking to their GPs about being tested. I crossed my fingers and hoped to God that they would get the all-clear. Regardless of the results, they would be tested every five years for cancer for the rest of their lives.
The blog was out there on the world wide web, and I couldn’t stop thinking about what I’d written. I kept reading it back and forth, back and forth, looking for any spelling mistakes, rephrasing almost every sentence, and changing the way it had been written. I felt vulnerable about putting myself out there, and my anxiety levels were so high I was sweating on a cold winter’s day. And then, suddenly, while I was thinking about pulling the plug, I got my first subscriber to the site, followed by positive messages on my social media—people telling me how sorry they were to hear the news, how eye-opening the blog was, and how well it was written. More and more people subscribed to the site, which put a huge smile on my face and motivated me to carry on. It was mainly family and friends at the moment reading the blog, but it was never about the number of people subscribing; it was the message that the blog carried.
Dr. Kabubi called and said she had been on holiday but couldn’t stop thinking about me while she was away. She had a thought that some of the symptoms I had been describing were similar to what her brother had experienced when he had a blood clot. She arranged for an ultrasound the very same day, but after checking the entire leg and connecting blood vessels, I got the all-clear, so we were back to square one. One evening, my mum came to stay with us, and my leg was bone cold. My foot felt as if an elephant was sitting on it, and my calf was violently cramping, jolting my leg and sending my foot into acrobatics. I was rolling in pain while my mum tried to calm me down; she was helpless to do anything to reduce the pain. My wife was frozen, unable to offer any support, and gave me the maximum dose of painkillers. She called for an ambulance. The operator said it would take over two hours for the paramedics to arrive; it was a busy night for them as the COVID restrictions had been lifted and people were overindulging. Meanwhile, I passed out because of the pain, and when I woke up four hours later, there was no ambulance. She called the paramedics and cancelled; there was no need for them. The pain had passed, and I’d had all that I could of the liquid morphine, so I went back to sleep.
March 2022 – Carry me home
I was headed for a routine CT scan. I had to call the NHS Transport service to carry me downstairs and drive me to the appointment. I was used to it by then, and as I sat down onto the foldable chair and crossed my arms with my hands on my shoulders, the transport team broke out in laughter, calling me a “regular… He knows the drill,” with a point of the finger and a wink of an eye. Sitting on a small foldable chair, which operated like a small heavy-duty hand truck—the ones where you tip it towards you as you take it onto two wheels at the back—I was set at an angle through the corridor. As we came to the stairs, one person carried me from the front and the other from behind, hoisting me high. I was almost vertical at this stage, praying that they didn’t drop me. Each floor gave them a chance to catch their breath, and we went again—all this down three flights of stairs. I really did feel sorry for them. At the bottom, a joke was always made about them not needing a gym pass, and then I was loaded into the van like furniture for a removal company.
As I was airlifted to the van, which was identical to an ambulance, I hoped the neighbours didn’t see me and that they didn’t jump to any conclusions, as if I was being rushed back into hospital because I’d taken ill again. You could see the curtains and netting twitching at the windows from the usual suspects—their silhouettes of someone looking out their window to see what was going on. The appointment was at the QE2 Hospital, which was a stone’s throw away from where I lived. In fact, it took longer for the NHS transport to come and carry me down to the van than it took to drive to the QE2. Anyway, I needed it, so I used it.
As we arrived at the QE2, the driver was on the hunt for a wheelchair. I should have invested in one, but I didn’t want to rely on it, as I knew I’d get lazy and never walk again. I was able to walk short distances—the furthest I could go unaided was from the bedroom to the kitchen (I say “unaided,” but I really meant bouncing off each wall, clutching every doorway and crevice for grip, and swinging myself through to each room. Imagine Spider-Man midway climbing walls and suddenly losing his ability to stick—that was me). I wouldn’t have been able to get around an entire hospital. Luckily, they found a comfortable chair and wheeled me to the Imaging, X-Ray, and Radiology department.
I was in and out of the scan in less than an hour, and I was waiting for another team from the NHS Transport service to come and collect me. My wife was with me, and we grabbed a coffee and a bite to eat from the hospital’s café. We enjoyed each other’s company while we waited for the NHS Transport. Sitting outside and socialising was something I sorely missed. Going out for coffee was something I used to do on my days off, and I enjoyed every minute of it. It took about two hours for someone to come and collect us, but we had time to kill, and the conversation was nice. We spoke about our children and plans to move into a house. We had looked at privately renting a larger property, but as I’d been off work for 10 months and my partner wasn’t earning much from her Teaching Assistant role, we wouldn’t have been able to get one. So, we decided to go down the council route.
We had put in an application for a property with the council’s housing team at the beginning of the year, and our case manager had asked us for letters, bank statements, hospital notes, etc., and had asked for it in drips and drabs rather than all at once. She had all that she needed after about six weeks and told us to check online for an update on our banding. Everyone looking for a council property was put into a ‘band,’ which ranged from A (being the highest/most urgent need) to F (not-on-your-life chance of getting one), of which they could place a bid for a property online. We were in band F, and when we chased the application, we were told our banding had not been updated but would be online. We couldn’t be told over the phone what band we should be in; all we knew was that it wasn’t F.
We continued to log in to the council’s app, and nothing had changed. Our case manager was adamant that it had on their computer but again couldn’t tell us what band we should be in. We were told to bid, but our bids were cast into the ‘not considered’ pile for all the properties, so something had to be wrong. We contacted the Citizens Advice Bureau, and a helpful gentleman took us through a mock exercise which roughly determined what band we should be in. After answering all his questions and taking on board my situation and the letters, we had sent to the council, he was perplexed that we were only band F. He said that we should be at least band B. He advised us to call the housing team and have them explain why we were so far from their suggested banding.
We called the housing team and got through to someone else, not our case manager. Normally, if a case manager was not there, they would tell us to call back to speak with her. However, on this occasion, the lady was kind enough to take a look. She sounded more senior and more willing to investigate why our band was so low. A short while after we explained our situation, she saw what the problem was: my name was not on the application. A silence fell after she said that—a tumbleweed moment—followed by an onslaught of “WTF,” “You have to be kidding me,” “No way, Jose!” “Ah, ah,” “Are you talking to me? I think she’s talking to me!” “Not on your life, pal!” Now this Pooh Bear was mad—you wouldn’t like me when I’m mad.
Most of the documentation that we had sent to our case manager had my name on it. There were hospital notes, letters from my GP, physio, neurologists, and specialists explaining my disability in detail, and now we were being told our application was null and void. Why weren’t we told of this sooner?! We asked if they’d be able to add my name to the application, but apparently, it didn’t work like that. We had to start the application all over again. It was a typical “computer said no” moment. The woman was very apologetic and demonstrated a great deal of empathy for our case, but we couldn’t ‘pass go’, let alone ‘collect our £200’. Shortly after we submitted our application again, a cousin of mine came to visit. He had his own business and wanted to help promote awareness on the upcoming bowel cancer awareness month (April). He asked if we had been looking for a better-suited property. We explained what had happened with the council housing team, and he was livid. He spoke about the issues with his local council and advised us to get in touch with our local MP or councillor and ask them to help with the application. We said we would try; we had nothing to lose. So, we found out who our local MP was—Grant Shapps (useless)—and our local councillor, Margaret Birleson (amazing).
Margaret was straight on the phone with me, asking me to provide her with more details about the application and to give her permission to speak to someone senior in the housing team. We gave her outright permission to take on our case, and within a short time, a senior member of the housing team called and asked us to forward all our paperwork to her so she could review and handle the case personally. We felt confident that someone was taking our case seriously, but a few days later, we were told the paperwork provided by the physio, specialist, and GP did not state that I was unable to walk down and/or climb stairs.
I argued that the letters stated clearly that I needed a frame to get around, and the physio and I did try stairs, but I was unable to progress any further, and it was decided that my physio lessons would be on hold until the pain could be better managed. But it wasn’t as black and white, so it felt like we were back at square one. We were still at band F, and all this seemed like a complete waste of time. Until my son’s diagnosis came through. For quite some time, we suspected that he had learning difficulties and showed signs of ADHD, and after 18 months of waiting for an ADHD assessment, he was finally diagnosed with ADHD. Social services had been in touch, and after finding out about our housing arrangements and Musa’s needs, they also took a keen interest in my health.
After speaking to them about my illness and disability, they arranged a home visit and assessed each of our needs and, most importantly, stated clearly that I could not do stairs in the report. We finally had what we needed for the housing team to change our banding, and to our surprise, we were placed in band A. Meanwhile, Grant Shapps’ secretary called to say our email would be forwarded to the relevant team—what a waste of time. Anyway, you might think that this would mean we could get a house quite quickly, but you’d be wrong to do so; we were still bidding and failing to secure a property. But we understood that there were those in situations far worse than ours and that they were in desperate need of a roof over their heads, so we waited and continued to place our bids on suitable properties. Fingers crossed we’d be in a property that better served all our needs.
My oncologist called to say my CT scan results had come back; there were anomalies within my right chest cavity—something that wasn’t there before but could be related to the staph infection I had last year. She arranged for a PET scan to rule out cancer, but knowing my luck, it could be more bad news. I had lost all optimism by this stage. Life seemed to have dealt me the worst hand at every crossroad and junction. Every time I thought positively about a possible outcome, I was given the worst case possible. But I was alive. Also, some of my siblings were having trouble with their GPs over testing for cancer. Their GPs were very dismissive, as most of my siblings were younger than me, but I asked them to insist on at least a blood test, as my oncologist said it was important to rule out any chances they might have cancer, and the earlier the diagnosis, the better the chances.
I had a meeting with work called an long term sickness (LTS). I met my manager Jen and Craig from HR, and the mood was positive. They were so understanding towards what I was going through. I downplayed my pain levels, I talked in strict medical terms, and I told them that the main reason I wasn’t able to work was because of the amount of medication I was taking and the side effects I was suffering from, mainly the drowsiness. I hated these meetings. I was overwhelmed with anxiety, and my imposter syndrome kicked in. I said that I was doing well when I wasn’t, and sedation from the medication was the least of my problems. I left the meeting wondering why I didn’t tell the whole story; I woke up with excruciating pain, I was in agony every day, and the medication was not just making me sleepy but also messing with my head. I was confused and had trouble remembering things; I didn’t even know what date it was. I forgot whether I took my pills in the afternoon when no one was around, so as a precaution, I didn’t take them so I wouldn’t overdose.
I found out later if I hadn’t taken them, as the shooting pain began and ended with me rolling around clutching my leg. If it wasn’t for my wife asking Alexa to set a reminder for me to take my pills and that lunch was in the fridge, I couldn’t confidently say that I was looking after myself. I sat on the sofa every day from 8 am to 10 am; my body wouldn’t move between these hours as the morning meds coursed through my system numbing me. I sat curled up in bed under the blanket, waiting for the ride to finish. By the time I was able to gather my wits, I made my cup of coffee. I couldn’t even stand long enough for the kettle to boil; I had to sit on the circular oven door handle to relieve some pressure on my right foot. Once it was poured, I hopped back to the sofa, trying desperately not to spill the smouldering coffee.
When I was seated comfortably on the sofa with my legs up, I took a sip of my coffee, and guess what? Yes, I forgot to add sugar. So why didn’t I say it like it was? Why hide it from my employer? If I really thought about it, it was all about job security. I didn’t want them to say that I wasn’t fit to come back or relocate me to another job or another location. I didn’t want my manager to think of me any less than who I was before and that I was committed to coming back to work one day. I loved my job! It may not have been everyone’s cup of tea, but when I was first asked to join a Project Management team on secondment, I had no idea what I was getting into. But then I met Tim Manns, and I was hooked (BTW—that’s California Dreaming playing in the background). He was so passionate about it and even conquered his fear of education, which we both shared, and he passed the PMP course. I asked him what he was looking for in a Project Manager, and I worked on becoming exactly that. Plus, I didn’t want to climb the management ladder. Although I felt I was very good at managing people and getting the best out of them (big-up Iced Gems), I loved delivering a motivating speech and collecting data to increase performance, but I didn’t want to manage people anymore.
I wanted variety and the opportunity to build something with different people and not have to sit and discipline someone for being late or going over their toilet allowance and forgetting their headset. I spent two years educating myself by renewing the same book from the library over and over again, Dummies Guide to Project Management. Then, after several failed interviews and working on the feedback, I got the same job I had applied for two years previously. It was as if fate came and kissed me right on the lips and said, “You deserve this, you sexy beast,” and I was a Project Manager.
So why did this cruel mistress betray me and cause me to become a shadow of my former self?! Her cherry-flavoured Chapstick still glistening on my lips. What did I do to deserve this? With so much time to myself, I often asked these questions and waited for a sign or a response from The Almighty. Although me and the big man hadn’t spoken in some time, since my diagnosis, I still believed He did this for a reason. I felt like someone who hung his cape and exchanged it for a grey velour dressing gown and some sheepskin moccasins. Why couldn’t I say I was struggling and having a hard time accepting who I had become?
My wife decided that she would raise money for Cancer Research by walking 10,000 steps every day for the entire month as part of their Walk All Over Cancer campaign. At first, she aimed to raise £100, which was a reasonable target, but she decided that ‘reasonable’ wasn’t good enough, so she wanted to raise more and set herself a target of £500. As she said, “Go big or go home.” She tracked her step count on her Fitbit Versa 3 (which I bought her for her birthday; husband of the year!) and went to social media and all the different mum WhatsApp groups she was a part of. She recorded her progress for everyone to see on a daily basis. She wrote her own piece about her Walk All Over Cancer campaign, and if you wanted to see how she did, click the link below to view the fundraiser page.
April 2022 – Familiar
I was picked up from the flat by the NHS Transport service, and when I say picked up, I mean lifted in the air, on a flimsy foldable chair and carried down three flights of stairs. I was met by two familiar faces—it was the same crew that picked me up from Princess Alexandra Hospital, Harlow, after that terrible episode in A&E of being locked up in a cupboard. They told me that I looked so much better than I did the last time they saw me. I told them they were being too kind, but I did feel a lot better as I had taken 10ml of liquid oxycodone to help with the pain I was in, and I felt as light as a feather and as high as a kite.
I took the mandatory position in the evac chair; a little chuckle came from the crew, and my wife made a comment, “He’s a regular.” Well, someone had to say it. As I was lifted in the air and down the stairs, I could swear that the seat was tearing as I felt I was going to go right through it onto the jagged edges of the stairs. Luckily, I made it in one piece, and I was in the van off to see my neurologist.
We arrived at Lister. I had fallen asleep in the back of the van—oxycodone will do that to you. The crew tried not to wake me as they went on the hunt for a wheelchair. I know, I know, I should invest in one, but as I’d already mentioned, I didn’t want to rely on it to get around, as I would never get back on my feet again. The crew was kind enough to wake me politely and wheel me to the waiting room. They checked me in, and we said our goodbyes. The problem with oxycodone is when you do wake, you are still in a dream state, and knowing what is real and what isn’t can prove to be tricky. I imagined empty pizza boxes left beside me, and Dame Judi Dench was waiting beside me. I stared at her, and as I raised my hand with my index finger forming to poke her, my wife slapped my wrist and told me to “stop it!”. I turned to her with a sour face, hissing like a wounded cat, clutching my hand, and I turned around to Judi Dench—and it was someone different entirely. Suffice to say, the man who appeared to be Judi Dench got up and sat elsewhere, but I couldn’t help peer over to her or him from time to time.
I was called in to see the oncologist, but I found that it wasn’t the same man that I saw before. I looked to my other half and said to her, “I’m still seeing things; it’s not the same person we saw last time.” She told me I was right; it wasn’t. I raised my eyebrow instinctively, bemused by what was real and what wasn’t. I leaned forward and asked the gentleman, “How do you do?”
“Very well, thank you,” He replied, “I’m Doctor Zandi. Now, your oncologist is not in today, so I’m covering his appointments until he’s back.” He went on to tell me that he resided at the Queen’s Hospital in London, the centre of neurology, and was quite keen to see me after looking through my notes.
I gave him a background of what had happened to me, with my wife filling in the many gaps my mind had tried to forget. He asked me to lie on the bed so he could physically examine me to understand the extent of my nerve damage. After a series of pushing and pulling of the legs, foot, toes, and hands, he sat down to give his initial thoughts, in his words:
“Progressive weakness, particularly in the right leg, leading to excruciating pain. Grade 2 power in the right foot, grade 5 being normal power. The likely cause could be peripheral problems with nerve roots and/or nerve ends. Inflammation of the nerves could also be the result of cancer and/or the treatment or medication prescribed, i.e., Oramorph, Longtec, OxyContin.” Dr. Zandi was concerned with the numbness of my toes and part of my feet and that I was unable to lift my right foot up.
He was concerned about the speed at which it went from a tingling sensation in my feet to numbness and pain. He felt it would be best that I be admitted to Queen’s Hospital. He suggested coming in as a day patient so that I could have all the tests done and then go home the same day. If there was a need to carry out further tests, then I could come in and repeat the cycle until they had all they needed to get the job done. He spoke about having a full-body MRI, lumbar puncture, nerve conduction tests, and possibly nerve biopsies. To do this as an outpatient could take almost a year, but as a day patient, I would be admitted to Queen’s Hospital with a bed, and the fact that they could do all that in one day was truly remarkable.
The thought of being on a ward again made the hairs on the back of my neck stand up and chill down my spine, like when Will from Stranger Things gets that feeling of the upside-down. I was having flashbacks of being in isolation again. Dr. Zandi went on to say if the numbness and pain were left untreated over a long period, it could result in it becoming permanent and incurable. With that statement, I agreed to be a day patient, and so we left with a sense of optimism that Dr. Zandi had taken ownership and that in the near future I might be able to get back to a ‘normal’ life.
I felt a tremendous warmth in my tummy—no, wait… that was my stoma bag bursting. Shit! My cousin wanted to do something for bowel cancer awareness month, so we brainstormed some ideas of how we could spread the good word and donate to a chosen charity. His company (Corker Cars) had already done so much for the community; they had won the Community Orientated Business Of The Year for their ‘Cabs for Jabs’ initiative and were finalists for the Frontline Worker Award at the Mayor’s Pride Awards in March 2022. He decided that he would donate 50p for every booking on their app from April 10th until May 10th, 2022. So, we took to social media to spread the word and collect donations, and I have to admit the engagement from the public was amazing. If you want to see how they had done, please visit the fundraiser page. T
he Pain Clinic finally came back to say they would see me on April 13th, after waiting three months for a referral. I was quite lucky, as I was told it would take at least six months for an appointment. They had also been hit hard with COVID, as many appointments were pushed back or cancelled. It would mean that I would have to travel further to North London, but at least I’d be seen by someone quickly. Also, the PET scan was arranged for April 14th to rule out cancer in my right lung cavity. Then I got a phone call from Queen’s Hospital to say they had a bed available for April 12th. It’s true what they say: you wait for an age for a bus, and then they all turn up at once.
I was back with the NHS Transport team on my way to Queen’s Hospital, which is the UK’s largest dedicated neurological and neurosurgical hospital. It’s at the cutting edge of neurology with equipment that no other hospital in the UK has at its disposal, like the only interventional MRI scanner. Adjacent to University College London (UCL), London’s global university tackling some of the world’s greatest issues, situated on Great Ormond Street, this truly is a global hospital that lives up to its name. Or, at least, that is how it was pitched to me.
I arrived at Queen’s Hospital around 11 am. The hospital felt old with its high ceilings and small corridors, only wide enough for one bed. Even in a wheelchair, you felt you had to tuck yourself in as traffic went in two directions—like a country road where you lean on the verge to avoid colliding with oncoming cars. There were so many wings, and each lift took you to different parts of the building. Finding the right lift was like finding station nine and three-quarters for the very first time. We asked for directions from staff, who pointed us in the opposite direction from which we came, as if the hospital was moving, shifting in different directions, unable to stand still long enough for us to find it. Finally, as we went back on ourselves in a smaller corridor, was the lift we needed. As we peered over, we saw that it was around the corner from the reception desk near the entrance. All we had to do was climb a few stairs, but as I wasn’t able to do so, we went the long way round. Stairs! These fu’king stairs!
As soon as we came out of the lift was the door for the ward where I would be staying for the day. I was allocated a bed, and shortly after settling down, Dr. Zandi arrived with two junior doctors. He introduced them, and—to be honest—I forgot their names, so let’s call them Junior 1 and Junior 2. Dr. Zandi then went on to say they would be looking after me and looked at each of the junior doctors and asked them, “What have you booked him in for?”
To which they replied, “Nothing.”
My gaze turned to Dr. Zandi as if to say ‘WTF,’ to which he looked at his junior doctors and asked, “When can we get an MRI done?”
“Two or three days.”
“I’m only here for a day;” I had to interject, “that was the agreement.”
My anxiety heightened. I was sweating, with my own body heat radiating from my chest, my breath getting tighter and tighter, and machines buzzing all around me. ‘I can’t do another day in the hospital,’ I told myself.
Dr. Zandi saw that I was anxious and tried to calm me down. He told his junior doctors that they needed to arrange an MRI tomorrow and as many tests as possible. He looked at me and realised he hadn’t even asked if that would be okay with me. I told them that I had an appointment with the Pain Clinic, which I had waited three months for, and his response was, “If we can do the test and figure out why you are having these issues and cure them, there would be no need for the pain team.” Touché.
It made sense, but staying in the hospital was my worst nightmare. I was already having flashbacks of when I was fighting the staph infection, but I knew this was the best course of action, and he was right. I agreed to stay, but I insisted on leaving tomorrow so I could attend my PET scan at Mount Vernon Hospital, Northwood. Dr. Zandi agreed the PET scan was important and made it very clear to the junior doctors that I must attend the PET scan. He asked me to pass on the details of the Pain Clinic to Junior Doctor 2, and I showed him my phone with all the details.
He started to ask stupid questions like, “Who am I calling?”
“What am I telling them?”
“Have you got a phone number for them?”
I told him I’d do it, as it seemed the way the conversation was going. I also gave him a list of medications I was on, as I only had enough to last me the rest of the day. I called my wife and kids and told them the news. They were disappointed but understood.
I settled in for the night. Fortunately, I brought my charger with me, and I had enough stoma supplies to last me a couple of days; however, the spray I used to dissolve the adhesive to remove the stoma bag was running low.
I woke up in the morning and was sent downstairs for a nerve conduction test. This was where they attached sticky pads along your nerve channels and hit you with short, intense blasts of electrical energy and recorded the feedback on the computer. They also put a long thin needle into your leg, in between the muscles, and asked you to tense as they pushed waves upon waves of electricity down your leg. It was like a meat thermometer attached to the living leg of a lamb. It hurt!
When I arrived back at my ward, twiddle-dum and twiddle-dee (I’ll get on to why I call the junior doctors this) came to see how I was. I told them that I was looking forward to doing more tests and getting out of there later in the day. They laughed with me, unaware of the fact that I had already done the nerve conduction test. When they were told that I’d already been to do the test, they said to each other that one of them needed to cancel the request they had just put in. They wanted me to do an MRI, which they hoped they could book later that day. Other than that, I’d just be waiting.
As the medication was being dispensed, I was missing a lot of painkillers from my morning dose. The nurse said that everything the doctors had prescribed to me had been given, but I corrected her by showing her the list I gave Junior Doctor 2. She told me that she’d need to take it up with the doctor, so I’d be there rolling around in pain for some time. I asked her if I’d been booked in for anything else. She told me I had an MRI booked for that evening at 7 pm, which I thought was quite late considering I needed to be home ready for tomorrow’s PET scan. I took what she gave me and lay back in the bed, waiting for the rest of the medication, which came a couple of hours later. After lunch, I was sitting in the chair thinking, sensing something was wrong, so I asked the nurse if I could speak to a doctor. She asked why. I told her I wanted to discharge myself, jokingly.
Both junior doctors came around, and I asked them about the MRI being quite late in the evening and when the transport had been booked for. They told me that the transport hadn’t been booked and that I’d need to stay there another night, to which I replied, “So you’re going to arrange transport to come here and collect me and take me to the PET scan and then bring me back?” They said they would look into it and disappeared. Hours went by, and still no news as to how I was getting to my PET scan. I had already asked the ward nurse to try and find the Stocare spray for my stoma, and I was worried that I’d run out by the end of the day. Needless to say, she had disappeared for hours too. I asked a nurse I saw walking past if I could speak with a doctor, and again the same question, “Why?”
“I want to discharge myself,” Only this time I wasn’t laughing.
Junior Doctor 2 arrived and told me that they couldn’t arrange transport from Queen’s to Mount Vernon, but they could offer me a ‘day release,’ whereby I could go home and then attend my PET scan but would have to come back to Queen’s straight after. I agreed with it; it made sense to carry on the testing as more needed to be done. So, I asked when I would be collected to go home. Junior 2 responded, “You’re not entitled to transport under the conditions of a day release.” Even hospitals have T&Cs. I asked to speak to Dr. Zandi, but he wasn’t around. I tried to explain to the junior doctor that I needed someone to carry me up the stairs because of my disability, because of why I was there, but he wasn’t interested. I tried to plead with him that I was only meant to be there a day, but because nothing had been booked in, I agreed to stay one more day as Dr. Zandi had said, as he agreed.
Dr. Zandi had said I must attend the PET scan. I tried to tell the junior doctor that I might have cancer, but the junior doctor wasn’t interested. He said that there were more tests to do and I would need to remain there until all the tests had been completed. So, I asked him, “What are my options?”
“You can stay here to do the tests, and once we are done, you can go home with the transport team, or you can take the day release and make your own way home, but you must come back here after your PET scan.”
“Or?”
“Or you can discharge yourself.”
“I’ll do that. I’ll discharge myself.”
“Why? Going against medical advice. You won’t be entitled to transport.”
“Because I have a PET scan to go to, and if it means being relieved of your duty of care, then so be it.”
“Fine, I’ll get the forms.”
He went off, and I looked around the ward with everyone silent and looking over at me, but I didn’t feel embarrassed. I took a deep breath and sent a message to my family to say I was coming home. As I was packing my bags, my wife called to ask what was going on. I explained everything that had been said, and she was angry. She said she’d call the site manager, speak with them, and call me back.
Meanwhile, the junior doctor came back with the ward sister, and we replayed everything that had already been said. I guess he needed a witness. I signed the forms and carried on packing my bags. As I finished, Junior Doctor 1 paid me a visit and was sympathetic towards my cause. He said he “understood why I wanted to attend the PET scan”
“why I wanted to go home.” So, I asked him if he could discharge me, but he flaked and said he couldn’t go against the other junior doctor. It was all words, picked up in a customer service handbook—something I used in my time working with John Lewis and Ocado. The junior doctor left, and I sat on the edge of my bed, hands covering my face, and I started sobbing, thinking, ‘Why did I ever agree to this?’ I imagined myself storming out of there, but the truth was I couldn’t even walk to the door without some sort of support.
The ward sister put her arm around me and said, “If by 8 o’clock you haven’t got a lift, let me know.” Bless her. I checked to see how much it would cost on an Uber—£63—and I started to hatch a plan: if I slept in the car that night, the transport service would collect me the next morning, and then they’d collect me from Mount Vernon and could carry me upstairs to the flat. Before I could book the Uber, I waited to hear from my wife. She called, and she had spoken to the site manager, who was very understanding of the matter and agreed I should attend the PET scan. She explained that there was no link between Queen’s and Mount Vernon. She agreed to arrange transport, but I would need to attend the MRI at 7 pm. I agreed; I hadn’t much choice.
So, I settled in and tried to calm down. By this point, the doctors had gone home, and the night staff were settling in. I went around the ward asking patients and staff what they would do if they had cancer or nerve pain—which they
May 2022 – Purgatory
Have you ever wondered what exists between this life and the next? The moment when your soul departs from your body and journeys to a different realm. What is it? Where is it? If you’ve read the book ‘The Midnight Library’, where a middle-aged woman, by the name of Nora Seed, decides to take her own life because she believed she had squandered every opportunity the universe had given her. A failure in her own eyes; she imagined herself being a successful swimmer or musician, a great philosopher, a wonderful spouse, a globetrotter, and a glaciologist. None of which she aspired to. She even saw herself as a failed cat owner, who died, which may have been the straw that broke the camel’s back.
Soon after taking her own life, she’s transported to a place where, beyond the immediate thick fog, was a building no bigger than a small church or a Tesco Express. As she walked towards it, she saw a large wooden door with a grand-looking clock which stated it was midnight. She walked inside, and the structure of the building has changed much like the Tardis (Dr Who); it’s much larger than what it seemed from the outside and is stacked full of books. As she travels deeper into the room, she’s lost sight of the way she came in, and she couldn’t find any signs of a way out. As she walked around, she met a familiar face, Mrs Elm, the librarian from her middle school when she was younger; she had a strong bond with Mrs Elm during her childhood, and she remained very fond of her as an adult too.
Mrs Elm explained that this library only exists between life and death and the books on the shelves are of her. Each book is a variant of what she could have been if she had made different decisions along her own timeline. She could be a swimmer in one book and part of a rock and roll band the next, but she could only exist there for a limited time and realised that it was a multiverse whereby she had taken host of a different Nora existing in a different timeline, each one with its own pleasures and misfortunes. And there was a book, unique to all the rest; it was ‘The Book of Regrets’. Every regret Nora had in her life had been recorded in this book, and it was so large and heavy it had to be placed on the floor to read it. The book was divided into chapters, with each year of her life being a new chapter, and as the book progressed, the chapters grew larger and larger. By the end of it, well, I’ll let you find that out for yourselves. However, it is said that the setting and people each of us meet during our time in Purgatory will differ.
For me, I imagine my 'librarian' would be Fiona Tyrell, possibly the first person who saw any potential in me. Someone I wanted to impress, someone that I admired greatly. We would be in either Poppins, where we went for coffee, or the Waterstones in the town centre, which has a coffee shop and a nice seating area inside. I think I may have visited it when I was in the ICU.
I would tell Fiona that I missed her, and I wish I had stayed in touch. She was a mother figure to me that took a great interest in my personal life; she saw potential in me when others thought I wouldn’t amount to anything, and she knew of the demons I was fighting. She also knew I was very unhappy with my home life, especially the pressures of having an arranged marriage which my mum and dad fought over. That the alcoholism was a cry for help and the debts accumulated from drinking, smoking, gambling and retail therapy, all of which blocked out the fact of not wanting to be home, almost buried me in an early grave. I would have liked to have become a writer or a hockey player or at least to have gone to university. Sadly, I hadn’t had the confidence to do the former, and pressures from family and the guilt they made me feel prevented me from doing the latter. I wouldn’t say that I was depressed; I was just very, very unhappy. I never thought of taking my own life, like Nora, only till recently when I was given the bad news.
I’ve agreed to go back to Queens Hospital on the condition that I’m looked after by a different and more senior team. Dr Zandi agreed to this, and a bed was made available rather quickly after we had spoken on the phone. When I arrive, I sit in my chair, beside my hospital bed, looking around the room at the other patients; I can’t help but think that they could be a variant of me. Chris is laid opposite me, severely disabled, unable to speak and completely immobile; he can only make gestures with his face when speaking to the nurse as they second guess what he is trying to say.
Dilip was the only other person in the ward, laid next to the window; he had been transferred from Watford General after experiencing some numbness in his hands and fingers and muscle fatigue in his legs over a period of about a week or so, progressively getting weaker and weaker. He walked across the road from his home into Watford General A&E, and then he collapsed at the entrance. He was there for over 2 weeks before being transferred to Queen's, and at that time he couldn’t feel anything from the neck down. All I could imagine was him lying there in between the sliding doors, bumping into him whilst trying to close them, and then the staff rushing towards him. He had suffered a stroke, and his nervous system had shut down. While he waited for it to reboot, his bloodwork showed a rare protein, which had only been found in 3 other people in the world, was the cause of the stroke. In highly stressful environments this protein flares up and causes his nervous system to shut down.
By the time he arrived in Queens, Dilip was able to move his arms and neck, so he was getting better, albeit very slowly. It was fascinating to see the number of senior and junior doctors who wanted to study Dilip. It’s fair to say that both of them needed a lot more attention than I did. I couldn’t help but feel that the three of us could pose as a de-evolutionary picture of man, and if you were to take parts from each of us, you couldn’t complete Frankenstein. We were broken and labelled ‘not fit for purpose', and yet we had people around us telling us that we were going to be OK.
I met with Dr Zandi and a number of senior doctors soon after I arrived; he introduced each one and mentioned they will be looking after me during my stay. I was already warned that I may be in for a while, so I’ve made provision to have enough stoma bags, etc. to see me through for at least a week. We also agreed that if I’m here any longer than a week, then I’ll be allowed to go home on the following weekend and come back all through the NHS transport service. And, as before, I arrived on a Friday and nothing happened, apart from a physical examination to see if my nerve damage had deteriorated since the last time I was there.
The first night was agony; some fool of a doctor decided to change the times of my medication even though I had given them the dosage and the times, but they thought they knew better. I’m having hot flushes in the evening and flashbacks to a time when I was in isolation with staph. My mind fractured from before, creating images of me on a hospital bed inside a dark tunnel with a strip light above me running parallel to my body, barely able to light up the surrounding area above. A sound could be heard of a train hurtling towards its next destination, screeching against the rails, shaking the foundations above me, causing dust to fall from the ceiling onto me. There is a howling noise coming from afar, which I find later is an echo of my own anguish of being in this amount of pain. The oxygen mask feels like a muscle growing tighter against the elastic around the side and back of my head. All the while I’m unable to move from my bed; I’m not strapped down, but my body will not correspond to my brain’s demands. I can’t tell whether I’m underneath Temple Station or in the Upside Down.
The next day I’m in the MRI, only this time I’m given a light sedative to ease my mind to help with the claustrophobia. The team are talking to me the whole hour I’m in the machine, and I’m able to get through the entire procedure without any issues. The day after a lumbar puncture everything is going smoothly, and I’m visited by junior doctors wanting to make a case study of me; they really know how to make a guy feel special. I met with the physio the day after, who gave me some light exercises which will help with the fused muscles on my ankle and the shortened muscles in my calf. I’m not cramping up as much as I used to, and I’m getting more flex in my ankle almost every day. It’s a completely different vibe and atmosphere than the last time I was at Queen's; I’m in a different ward, and the staff are so nice. Each night I would ask the nurses to deliver the doses of my painkillers two hours ahead of schedule, and each time they obliged.
By the end of the week, I was done and on my way home, although I arrived at 2 am, and all that was left to do was wait for the results. I was confident that they would find something, as they did with Dilip. It could be a multitude of things, like inflammation of the nerves, cancer eating away at the nerve roots or damage to the sciatic nerve. I was proud of myself for getting through that week, mentally, because there were times, I wanted to discharge myself. I hate hospitals, and they seem to hate me too, but once I let go, I enjoyed it. Perhaps this experience was necessary for me to overcome my fear of hospitals, accept what I cannot control, and embrace uncertainty.
By the end of the month, Dr Zandi called to say the results are in, and although there are signs of progressive nerve damage to the roots, the extent of the damage cannot be found through tests alone; therefore, he doesn’t have the entire picture of what is going on inside of me, and we may never know the extent of the damage. He then went on to explain the common issues that come with the type of nerve damage I had been diagnosed with, all of which I knew of, but nonetheless, I was glad that it wasn’t all in my head. He goes on to tell me that he and his colleagues believe the nerve damage was caused during the surgery; the surgeon could have nicked a nerve or nerve group, and to find the nerve(s) affected is like finding a needle in a haystack. Therefore, the way forward is through physio and pain management. In essence, I will be like these people for the rest of my life.
There was an awkward silence after; my brain was still trying to compute what he had said. I was so confident they would find something, that they would give me a pill and all this suffering would be over, but no, God was not on my side – as I felt abandoned, in limbo. I asked him to go over the results one more time, as I thought I must have missed the part when he should have said, "We found the problem” and "The solution is…" but no, there was no cure. The days that followed were filled with hopelessness and procrastination at a level which I had never experienced. Was I depressed or just feeling sorry for myself? And then, one weekend, while the kids played Minecraft on their Xbox in the living room and my wife danced to a 90s hit list on her Alexa, in the kitchen, I was sat on the edge of my bed, wanting it to be over, crying, sobbing, visualising my own funeral in my head and going over my will and funeral cover to make sure it had all the information needed for a seamless transaction. I wanted it to end, the suffering, the pity, and the fact that my breakfast was compiled of painkillers, just so I could get out of bed every morning. I mean, what the F*CK! Where was my ‘happy ever after’? What did I do to deserve this? Why is God so cruel??
June 2022 – Trauma
Recently, I saw a news article about trauma. The reporter was talking to some of the survivors of the Hillsborough (football) disaster. It was a harrowing and detailed account of when Sheffield Wednesday hosted Liverpool FC in the FA Cup semi-final in 1989. Due to public transport delays, many Liverpool fans were running late and were anxious to get to their seats as quickly as possible. So many people gathered at the entrance and rushed toward the turnstiles to try to get to their seats. Having so many people trying to squeeze their way through the turnstiles and then the narrow main tunnel leading into the stadium caused a huge bottleneck. As the match continued to be played, supporters tried to squeeze through, and people spilt into the stands, causing the fans nearest to the front to be pinned against the metal-wired fence, which was designed to prevent anyone from coming onto the pitch. As the pressure grew from more and more people trying to squeeze through, the crushed barriers that were cemented down snapped. 97 people lost their lives, the youngest being 10 years of age.
Some fans who attended the match at Hillsborough went to Paris, France, in May of 2022, where Liverpool played Real Madrid in the Champions League final. The match was delayed due to an incident whereby ticketless Liverpool fans tried to push past the barriers and force their way in to watch the match, although this has been contested by many Liverpool fans and charities. Nonetheless, the surviving fans mentioned that shock and anxiety followed soon after the Hillsborough disaster. For some, it was months, if not years, later when they started to experience depression and other mental health issues. A psychiatrist said it is very common for the minds (of the survivors) to block out scenes and emotions due to the trauma, only to resurface much later. It was only after the recent event that many fans could talk about their mental health. It is as if a survival instinct buried deep in their subconscious reignited parts of their memories. The report went on to say that many of the fans who survived the initial event thought of committing suicide, and it also found that some supporters, from the Hillsborough disaster, took their own lives much later, which has not been accounted for in the initial findings. I can also consent to the findings of this report, having experienced such an event recently. I’ve been experiencing flashbacks to a time when I was in the hospital shortly after the surgery. And NO! It wasn’t the smell of Dominos that reignited those memories.
After being told that I may not be able to walk again and that I would be confined to a wheelchair and a Zimmer frame to help me get around, I found myself reliving the entire cancer journey once more. Looking over it with a fine-tooth comb to identify where I may have triggered the sequence of events that followed. Was it vaping? Was it the overindulging ‘Eating Out to Help Out’ scheme? Could it be related to my alcoholism during my 20s? Could this issue have been exacerbated by the healthy foods and supplements I started taking during my health kick two years ago? I found myself ensnared in a profound and unending journey. There were countless opportunities from my childhood to the present that I could have seized, potentially averting all the heartache and struggle that my family and I have endured, such as pursuing my passions, seeking help for my mental health, or making different life choices. These questions only seem to enter my mind when I’m in bed, tossing and turning, trying to get some sleep, regardless of what time I go to bed and how worn out I am. I battle with my mind on a nightly basis when I have the urge to kill myself. It seems simple to fill out the column titled ‘reasons to die’; the suffering would end, and my children would be free of looking after me – having to put up with a cranky and senile human being. My family would stop tip-toeing around me, and I'd be able to ask God why he did this to me before he pulls the lever to open up the trap door beneath me, plunging me into the fiery depths of hell. But I have to remind myself that God works in mysterious ways, and my demise could have been a sign to live my life with more meaning and purpose. I remain patient in the belief that He will come to me and tell me what it is that I am meant to do. I just hope my struggles mean that my children or siblings can be spared.
As it has now been over a year since my leave of absence from work, I’m invited by my workplace to speak with the occupational nurse from AXA. It’s standing protocol, but it’s not something I’m looking forward to. I know I have nothing to hide; otherwise, why would I be writing this blog? But I also know that I will need to sign off on permitting them to see my medical notes. I’m sitting down on a video call with a lady called Alisa. She’s delightful and puts me at ease straight away. She explains the process to me, and she lets me tell my story as best as I can so she can have the full picture, which should corroborate with my medical notes. She assured me that what I'm going through is "normal" and that I should heed my family's advice that it will be okay. She’ll be coming back to me with the final version of the notes and the summary that they’ll present to my line manager, advising Jen of their recommendations.
I have a hospital appointment booked with Dr Zandi at the Lister Hospital, Stevenage. I’m still grieving and making excuses not to go out. What more can he tell me that he hasn’t already? I can’t take any more bad news, and so I decide not to attend. I’m spending almost all my time in bed watching Netflix or YouTube in an attempt to take my mind off my issues and disappear into someone else. However, my mind persistently immerses me in the narrative, constructing a character in each scene where I assume the role of the victim. That's the consequence of having a highly active imagination. Even my Instagram feed is frustrating me; motivational garbage like ‘today’s pain is tomorrow’s power’ and ‘trust the timing, everything happens for a reason.’. It’s the same nonsense I once advocated as a team manager. I actually believed it once upon a time.
It's time for me to confront reality and acknowledge that these are the circumstances I've been given, and instead of resisting the current, I must embrace it and adapt. I’ve decided to invest in a wheelchair. I understand that I previously stated I wouldn't invest in a wheelchair because I feared it might make me lazy, but I now realise there is no other option. To help me get around and for the NHS Transport team to get me to my appointments, I’ve started to look for a wheelchair. Having looked online, there are so many to choose from. There are self-propelling wheelchairs with various different colours, makes and models, with optional extras of different seat cushions, backrests, tyres to suit all terrains, and leg rest and cup holder sizes to suit every thermos possible. It’s easy to get lost in all the luxury items, but if I’m sitting in it for the rest of my life, then I'd better make sure it lasts and is comfortable. Then, there is the price; some of these wheelchairs cost thousands of pounds and are made from special lightweight alloys, featuring tyres with tread that comes straight from MotoGP rally cars. It would be wonderful to have the Quickie Nitrum wheelchair, but am I really going to get around the bakery aisle at the local M&S any quicker than a bulk standard wheelchair? Possibly not, but at least I’ll be getting around in style. Sadly, my budget doesn’t stretch that far, so I go for a mid-range lightweight wheelchair that is as inconspicuous as my beloved Honda Jazz. Reliable and affordable with a few extras because I ‘just gotta have it’.
As I await the delivery of my wheelchair, I meet with my dietitian, who recommends that I switch up my meal plan. It’s remained very beige since I was released from the hospital, and I’m still drinking the AYMES nutritionally balanced milkshakes, which I order by the crate. She advises me to incorporate more fruits and vegetables into my diet, but I must monitor the amount of fibre I consume, as it may cause my stools to become more solid, and my short colon, which is connected to my stoma, may not fully digest the vegetables. I’m also wary of the fact that any greens will make my stoma erupt more often and cause a horrid stench, which can’t be blamed on the children. I have to confess that it took me by surprise that the quantity of carbs and sugar I was consuming led to the enormous waistline that had suddenly popped out from under my t-shirts. Adding a few pieces of broccoli to my diet would be beneficial.
My GP is also keen to see me after receiving a letter from Queen's Hospital regarding my test results. She’s disappointed to see that all the tests they were able to do on me didn’t find the cause or the solution for the nerve damage, but she, too, understands the risk of opening me up again; it’s not worth taking, so she devises a plan for my rehabilitation. I’m already experiencing the long-term side effects of being on the Gabapentin and the Oxycodone; the Gabapentin is causing inflammation to my lower back (right side), and adding to the opioids is increasing my pain sensitivity, not to mention the short-term memory loss, confusion, nausea and right foot twitching in frustration. Imagine if the hand from the Adams Family were your right foot, having a mind of its own, pointing, tapping Morse code, playing charades, and never getting the answer right – but the benefits outweigh the difficulties I would face without the medication, so it’s a no-brainer.
I still ask myself, "How did it come to this?" Why am I unable to get past this feeling of loss and regret? I’m becoming ‘embittered’ as I feel I have no meaning in life or am losing sight of it. I spend my nights chasing shadows, dreaming of burying the former version of myself. As I stand overlooking the casket, I see messages from people I used to know that remind me of who I once was. Comments about the person I was before—smart, forthright, handsome, modest, hard-working, Mr. MOtivator, and a great dad— are just some of the comments I can see among the flowers and the candles below a faded stone sigil of remembrance with a small plated plaque with embossed writing upon it:
Mohammad Samad
1984 – TBC