When Frank was diagnosed with Acute Lymphoblastic Leukaemia (ALL) at the age of 49, he had no idea of the many hurdles that lay ahead. From the very beginning, like so many, all he wanted to know was if he would live. After months of treatment, an infected Hickman line, a pulmonary embolism, and some agonising side effects, he then discovered he needed a hip replacement, which took three years of recovery. Finally back on his feet, he reveals how a change in his lifestyle and a positive outlook has given him a new lease of life.
Frank, with wife Tanyika, at Land's End this winter
In October 2008, at the age of 48, my wife Tanyika noticed how pale I looked and suggested that I go to the doctors for a blood test. I did and, the following week, phoned for the results which came back fine. By February 2009, I had started experiencing flu-like symptoms. Awful headaches that wouldn’t go away, a nasty cough ,and I was starting to feel weak. Tanyika kept urging me to go back to the doctor, but I was reluctant as my blood test four months earlier had been fine.
Things became progressively worse and within weeks I was barely able to walk up a flight of stairs or do any meaningful work. We ran a food business in London and needed to make a couple of deliveries. For the first time ever, I had to ask Tanyika to drive whilst I lay down in the back, giving directions. I finally agreed to see go back to the doctors. We managed to get the last appointment of the day with a locum and drove straight from work to the surgery. We ended up waiting quite a while to be seen, but I was grateful to get in at such short notice.
The doctor asked what was wrong and I replied “everything” which to her probably sounded rather flippant. She shone a torch into my eyes, probed me with her stethoscope and asked whether I’d had any recent health issues. I told her that my sinuses had played up from time to time but that was it. She decided that a course of antibiotics would be appropriate, so we left with a prescription and picked up the drugs from the local pharmacy.
When we got home, I walked into the living room and lay on the floor. I still had my coat on as I had the shivers. Tanyika and I were now of the mind that my zombie-like condition would improve once the antibiotics kicked in. After an hour or two, I literally crawled into the bedroom and lay on the bed, still wearing my coat. I stayed in bed until late Saturday night when I finally made a decision to get up. I managed to stand and take a few steps before my legs gave way and I fell onto the ironing board. The iron, which was perched on the end, missed my head by inches. As I vaguely recall, I was picked up by ambulance and taken to the Whittington Hospital in North London.
Things became progressively worse and within weeks I was barely able to walk up a flight of stairs or do any meaningful work. We ran a food business in London and needed to make a couple of deliveries. For the first time ever, I had to ask Tanyika to drive whilst I lay down in the back, giving directions. I finally agreed to see go back to the doctors. We managed to get the last appointment of the day with a locum and drove straight from work to the surgery. We ended up waiting quite a while to be seen, but I was grateful to get in at such short notice.
The doctor asked what was wrong and I replied “everything” which to her probably sounded rather flippant. She shone a torch into my eyes, probed me with her stethoscope and asked whether I’d had any recent health issues. I told her that my sinuses had played up from time to time but that was it. She decided that a course of antibiotics would be appropriate, so we left with a prescription and picked up the drugs from the local pharmacy.
When we got home, I walked into the living room and lay on the floor. I still had my coat on as I had the shivers. Tanyika and I were now of the mind that my zombie-like condition would improve once the antibiotics kicked in. After an hour or two, I literally crawled into the bedroom and lay on the bed, still wearing my coat. I stayed in bed until late Saturday night when I finally made a decision to get up. I managed to stand and take a few steps before my legs gave way and I fell onto the ironing board. The iron, which was perched on the end, missed my head by inches. As I vaguely recall, I was picked up by ambulance and taken to the Whittington Hospital in North London.
"The doctor asked what was wrong and I replied “everything” which to her probably sounded rather flippant."
It was a Saturday night/Sunday morning and probably the worst time to arrive at A&E. I was told that I’d need to wait quite a while as there were a number of mostly drink related casualties ahead of me. By now, my brothers Dave and Eze arrived. I was wearing a hospital gown, and both asked why my legs were bruised. I had no idea, but was starting to wonder if this was in some way connected with my illness.
After waiting for hours, I was eventually seen by a doctor, although I have little recollection of it all. My bloods were taken and I was told to wait whilst the results were analysed. Eventually a female doctor came over to me in a hurry and told me that I had a serious blood disorder but not to panic. I would have to be taken to the Royal Free hospital in Hampstead, where they specialise in this type of leukaemia. This was the first mention of leukaemia and the point at which I realised I wouldn’t be going to work on Monday, and no doubt, for many days after that. I remember hoping that it wasn’t the same type of leukaemia that had killed my friend Alex 12 years ago.
I spent the following seven months as an inpatient at the Royal Free undergoing treatment for Acute Lymphoblastic Leukaemia (ALL). And yes, it was the same type that had taken my friend Alex.’s life. In the medical world, twelve years makes a big difference. They didn’t just administer chemotherapy anymore and send you home. The protocol now involved isolation, trials, and constant monitoring.
From the very beginning, like so many, all I wanted to know was if I would live. And if so, for how long. A perfectly rational request that nobody seemed able to answer. Alex, who was in his early 60’s, died soon after discovering he had the disease so I wasn’t feeling optimistic. The best I could glean was that a man in his late 40’s had a 30% chance of survival.
"From the very beginning, what I wanted - or needed to know was would I live? And if so, for how long? A perfectly rational request that nobody seemed able to answer."
My family and I agreed that I should use my private health insurance as, freeing an NHS hospital bed seemed the right thing to do. I soon found this to be a big mistake. With all of the various policy exclusions, I ended up having to spend hundreds of pounds which we simply couldn’t afford as we’d by now lost our business and had no income. From what I could tell, the only difference between private care and the NHS was a better view over Hampstead and free newspaper each morning. And, because I’d made a claim, AXA/PPP put the premiums up and made it impossible to maintain.
My stay at the Royal Free was also at the time the hospital was undergoing refurbishment so I had to endure the sound of pneumatic drills, dust sheets and a lot of disturbance. There was no telephone signal, no internet, and the TV’s didn’t work properly. Visitors were required to pay for parking if they could even find a space. On the plus side, a MacMilllan cancer facility started up and I was their first client. A nurse called Tracey Palmer helped me enormously with claiming benefits and provided invaluable support. I will always be grateful for that.
Food was a problem too. I have no idea what it’s like now, but back then the hospital served powdered egg for breakfast. So, although my insurance company paid £70k for my treatment, I still had to put up with the inedible food. And why, when diet and nutrition is meant to play such an important part in a patient’s recovery? ‘Let food be thy medicine’ proclaimed Hippocrates. I also found it infuriating that the likes of WH Smith and Costa, set up inside the hospital, were peddling all the kind of food and drink that should, in my opinion, be banned from hospitals. I appreciate that the NHS receives income from these franchises but shouldn’t they be promoting healthier options?
And, on top of all of this, I had a Hickman line plumbed into my neck which became infected and had to be administered again. Unfortunately, there was also a complication, which resulted in the procedure taking longer than planned and the anesthetic wore off. I had further infections, one of which became life threatening. I also had a pulmonary embolism, which required three years on blood thinners. One particular chemo drug brought me out in blisters from head to toe and another literally stopped me from breathing. But the regular highlight of my treatment had to be the spinal tap or ‘lumbar puncture’. For anybody unfamiliar with the procedure, it’s when a needle is inserted into the lower part of the spine to test for conditions affecting the brain, spinal cord or other parts of the nervous system. During the procedure, pressure is measured and samples of cerebrospinal fluid (CSF) are taken from inside the spine. I’d had this procedure a number of times, which, although essential, it was usually painful and very unpleasant. I hoped and prayed that the doctor would hit the correct spot first time but that rarely happened and it could end up taking two or three attempts. On one occasion it took twelve by three doctors! If there was ever a time I lost the will, this was it.
I was offered the choice of a bone marrow transplant or a two year course of immunosuppressants. I was fortunate that my brother Eze was a perfect bone marrow match, but I was made aware that the risk of failure would be higher. I decided to go with the immunosuppressants, which involved regular treatment and checkups at the Royal Free.
"Going through these ordeals, the thing I found the most frustrating was never finding anyone in person or even online with ALL"
By now, I was 25kg heavier than the recommended BMI. I’d put on a bit of weight before I became ill, but complete inactivity had made things much worse. I became really fat – and having been obese as a child, it depressed me to be here again. I decided to do something about it and dropped into a gym facility at a local hospice where they kindly allowed me to use their equipment in ‘down-time’. After a couple of sessions I was beginning to feel good about myself and I felt that these were my first steps towards my recovery.
During a workout, I began to feel a pain in my lower back and mentioned this to the gym staff. A physio checked me over, but couldn’t figure out the problem and suggested that it might be sciatica. I went back to the Royal Free and a scan was arranged. The results seemed fine so I assumed that whatever it was would just go away, but It didn’t. It was actually becoming more painful and I was now unable to sleep. I was prescribed sleeping pills for the ‘phantom’ pain, but even they didn’t help. After many weeks of acute pain and barely any sleep, I checked myself into A&E. I was X-rayed and told yet again that there was nothing wrong. During my next check up, I insisted on having an MRI which was arranged by the doctor. I explained where the pain was and assumed that the scan would cover my lower back and hips. Alas, the scan only covered my lower back and not further down, which was apparently an error.
By now I’d had enough and decided to take matters into my own hands. I went to see a doctor at the hospice and within five minutes he’d worked out that the pain was being caused by my hips. I reported his findings back to the Royal Free, this time, with evidence, that it was my hips, an only then was I told I had ‘Avascular Necrosis’ (AN). AN is a truly horrible side effect which a few unlucky patients experience from use of steroids that gradually destroy the joints, mainly hips and shoulders. There was no doubt that the agony I experienced from the steroids was worse than anything I’d experienced on chemo. I can’t describe it as painful, but deeply uncomfortable – severe restless leg syndrome being probably the worst of the symptoms. The only thing that helped lessen the discomfort was cannabis, not, I hasten to add, supplied by the hospital, although I did request it. The double whammy was that the steroids were probably responsible for most of the weight gain and all this excess weight was bearing down on damaged hips causing extreme pain. I was diagnosed with depression in 2004 and have been on medication ever since. I needed to double the dose at this point to help me cope.
"I don’t think anybody really knows why we contract ALL and maybe we’re predisposed to it. I know that my lifestyle left a lot to be desired, eating badly, drinking too much and not sleeping well"
The immediate priority was a left hip replacement – tricky on immunosuppressants as I would be highly receptive to infection. The pulmonary embolism was another concern but, with a great deal of care and skill, the surgeons at Royal Orthopaedic came through for me. With waiting lists and recovery time, it took around three years of surgery on my hips and shoulders before I could resume anything resembling a normal life.
Going through these ordeals, the thing I found most frustrating was never finding anyone in person or even online with ALL - let alone anybody with ALL and AN! I must have Googled it hundreds of times, but to no avail. Was I the only person on the planet to have this disease? It certainly felt like it. And although I had incredible support from family and friends, I still felt isolated in not being able to connect with anybody else going through a similar experience.
I made it a priority to do something about it and started putting pressure on a couple of influential people to help start up a forum. My oncologist Adele Fielding - one of the world’s most accomplished and respected experts in the field of leukaemia, fully understood and put me in touch with a gentleman by the name of John Reeve. John told me the heartbreaking story of how he lost his son to the disease and how driven he has been ever since to do whatever he could to help sufferers. Then, in 2012 I attended a patient conference where I met experts, charity representatives, health professionals and ex-patients. One of whom was Jonjo Rooney, the founder of Bpositive. He told his survivor’s story and was so inspirational. Finally, someone who had been through a similar thing.
"Was I the only person on the planet to have this disease? It certainly felt like it."
I’ve managed to lose all of the excess weight and although there has been a fair bit of muscle wastage over the years, I’m now weight training and exercising regularly. I’m more determined than ever to be as fit, if not fitter than I was before my illness. Yes, you can beat ALL, avascular necrosis, blood clots, infections and anything else that you may have the misfortune to deal with.
Regardless of what caused ALL in my case, I made a decision to avoid anything that might trigger a relapse. I cut out sugar, which I replaced with a substitute called Stevia, and I avoid processed foods. I have educated myself on diet and nutrition and try to cook everything from scratch. Stress might easily have been another factor, so I told Tanyika repeatedly throughout my treatment that as soon as I was given the all clear, I wanted to move out of London, which we did, to Devon in 2015. We’re surrounded by countryside and situated only four miles from the sea. I now work part time, so money is tight, but our quality of life is amazing.
Yes, I had to remain positive throughout years of trials and tribulations, and sometimes it felt like it would never end. But ALL is survivable and I, along with many others, are living proof!
Do you know someone who has been affected by acute leukaemia?
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