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How the challenges I faced with leukaemia made me re-evaluate my life, for the betterĀ  ...

2/28/2017

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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.

Picture
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.
​
"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? 
​Would you like to share your story with us? If so, get in touch here.


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"I was not prepared for the physiological changes I have experienced post transplant" ...

2/7/2017

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You may remember Alex. Back in April she shared her story with us about how maintaining a healthy body helped her throughout her treatment with leukaemia. Now, 8 months and one stem cell transplant later, Alex once again speaks openly and honestly about how no amount of reading or advice from doctors or nurses can truly prepare you for what to expect from a stem cell transplant. Alex explains how the journey doesn't end when you leave the hospital. The following article is taken from Alex's personal blog (AlexisALLin) which she has kindly shared with Bpositive .
​

Picture
Alex, prior to being diagnosed with ALL in 2015

"Hello everyone,

​
It has been a while since I have posted a blog, 8 months to be precise. Since getting home from hospital following my stem cell transplant I hadn’t felt up to writing about everything, but have been reading a few blogs recently and having found it extremely useful, and so I felt the need to share what has happened in recent months. Whilst I was in hospital having my stem cell transplant, when I felt up to it, I tried to post as often as I could as I wanted to document the highs and lows of this process, as there really isn’t that much first hand documentation of stem cell transplants. The nitty gritty of my hospital time is all available in the Stem Cell Transplant section of the blog page.
 
I don’t think any amount of reading or advice from doctors or clinical specialist nurses (CNS) can truly prepare you for a stem cell transplant. In comparison to the stem cell transplant, my induction chemotherapy treatment felt quite literally a walk in the park! As most of you know I spent 11 weeks as an in patient for my transplant. I almost got out at 6 weeks, the average time quoted for a transplant, but after a re-activation of CMV virus, I spent a further 5 weeks in hospital. Fortunately I didn’t have any symptoms (commonly flu like) so didn’t feel unwell but this only added insult to how I was feeling and how much I wanted to get home and out of that room. I found these last 5 weeks extremely difficult and psychologically really struggled.

Getting home was amazing, I can’t put into words how it felt to get in the car and see the back of the hospital, though I knew it was really only the start of my recovery. After 11 weeks in one room with very little movement, and having been on steroids that metabolise muscle mass for over two months, my legs were messed up. I had to shuffle up and down the stairs on my bum because my legs were so weak, it was a horrible realisation of the physical recovery ahead of me. When you get home from a stem cell transplant you are pretty much under house arrest for the first months, predominantly because the outside world and people pose a high risk of infection and your new immune system is that of a new born baby. This was pretty tough as you feel you get home and life might be a little more normal, but then you have to readjust your expectations and adapt to this new ‘normal’ – which is basically another space of isolation. On top of this I had to be extremely careful in the sun, and so being home in the height of summer was tough. Having had total body irradiation (TBI) your skin is very sensitive to the sun and you also are at a higher risk of getting skin cancer (cheers), and so I had to avoid the sun at all costs particularly during these first few months, which was quite testing at times.
​

Picture
The effect of steroids caused Alex's face to become, as she describes, a "moon face".
Picture
Alex's hair is slowly returning.

Once home we were heading back to clinic twice a week to check my blood levels and assess/update all the different drugs you are on following a transplant. The most important being the immunosuppressants (cyclosporin), usually these drugs suppress your donor cells to ensure the process of rebuilding your new immune system is a gradual one, and slowly these drugs are reduced down in dose. Unfortunately these drugs were deemed ‘toxic’ to me and my very precious bone marrow, whereby the drugs were actually ‘smashing up’ (my doctors words) any new cells in my marrow – not good. My white blood cells and platelets in particular took a bit of a beating, which meant I needed frequent IVIG injections or platelet transfusions to keep my numbers high enough to be walking around safely or using sharp knifes..!! This meant a lot more appointments and more trips up and down the M3 to Southampton. I was taken off the immunosuppressant drugs quite quickly, and we started to see improvements in my blood counts.


Without any immunosuppressants we were giving the donor cells almost free reign of my body, and for me this meant I started to experience symptoms of GvHD (Graft vs. Host disease). Where the graft (donor) cells see the host cells as foreign and attack them. GvHD can affect different tissues of the body including; skin, gut, liver, lungs, eyes, mouth, genitals. A component of GvHD can be seen as a positive side effect of the transplant, with doctors suggesting that the donor cells will also attack any leukaemia cells that may be present, known as the Graft vs. Leukaemia effect. Whilst I was in hospital I had gut GvHD very early on after receiving my cells, which was effectively dealt with, with high dose steroids. Though I was very glad to have this sorted quickly, once you start high dose steroids, getting off them is something that takes a long time, with the dose dropped very slowly over months!
​

"I don’t think any amount of reading or advice from doctors
or clinical specialist nurses (CNS) can truly prepare you for a
​stem cell transplant."

​The side effects of steroids and the GvHD are the two aspects I’ve wanted to write about the most, as these two components of post transplant life have been the hardest for me. First let me tell you about the joys of being on steroids long term. Here is a list of the most common short and long term side effects;


  • Abnormal fat deposits on face, neck and trunk (known as Cushing syndrome) – basically you look like a hunched, round bellied moon face!
  • Increased appetite – commonly leading to weight gain (affirmative!!)
  • Muscle wastage or weakness
  • Fluid retention
  • Dry scalp
  • Trouble sleeping
  • Thinning of skin
  • Red face
  • Thinning of scalp hair
  • Facial hair in females
  • Cataracts (TBI and a treatment I’m having currently called ECP can also cause this, so good luck to my eyes!)
  • Osteoporosis
    ​
As you can see, this list is not fun nor complete, and I have definitely experienced most of these. These side effects have really been the crux of my dark days. I was not prepared for the physiological changes I have experienced post transplant, predominantly due to being on steroids. I have put on weight, my body shape has changed drastically, and until recently I was bald. I hardly recognise myself in the mirror, and it has really affected my general confidence and self esteem. The significant physiological changes to your body are something that I feel needs to be spoken about more frequently, with more information made available to the patient pre-transplant to prepare them for this stage of the transplant process. Because although the main aspect of the transplant is getting you through the conditioning treatment and obtaining cell engraftment, with a rebooted bone marrow, the ongoing side effects post transplant are just as hard.
​
"I was not prepared for the physiological changes I have experienced post transplant"
The GvHD I started to experience at around 4 months post transplant was of the skin, which coincided within a week of me getting off the steroids. My complete joy of being off the steroids and minor reduction in a fat face was very short lived. For all the negatives effects of steroids that I just stated, they are very effective drugs, and fortunately for me (not being able to be on the other suppressive drugs) have a slight immunosuppressive effect too. However, this did mean that as soon as I got off them my donor cells were pretty much in charge and that’s when I started to get rashes on my face, arms, legs, and back – very attractive. These varied in how the presented, but mainly look like sunburn, flushing, or measles/spot like, and at times were/are very itchy and agitated further by heat and tight clothing. To my joy, I was informed the most common first line of defence/treatment is steroids and topical steroid creams, and so I was put back on the steroids, which I am still taking now. Skin GvHD can be extremely debilitating and very depressing. Having to apply the topical creams effectively is very time consuming, your clothing choices are restricted, where you go and what you can do is all governed by how good your skin is that day. The temperature inside and outside, how sunny it is, and quite frankly how confident you feel about going into the world with a rash all over your face all play a part in dealing with it.

​Due to the negative long and short term side effects of steroids, they are not classed as a long term treatment plan for GvHD. Fortunately, there is another treatment available and is called Extracorporeal Photopheresis (ECP), which I started just before Christmas. ECP involves taking out some of the patients blood (a little more than that of a blood donation), running it through a centrifuge where the red cells, plasma, and leukocytes are separated. The red cells and plasma are returned to the patient throughout the process (see picture), but the T-cells are treated with UV light and a drug before being returned to the patient. The whole process can take 2 hrs, sometimes more, and I am having this treatment twice a week (Thur/Fri), fortnightly. Though it can take months to see any significant results (depending upon the severity of the GvHD), and as a patient you may have to have this treatment for months/years, the doctors state promising results from it and it will hopefully mean I can finally get off the steroids for good!!
"Next month I turn 30 and I can’t wait, some people may not be happy to celebrate this milestone, but I can honestly say I will always be happy to hit each year I am blessed with!!"

So, that was quite a long update but wanted to share what I felt I could for now. I hope it is helpful for anyone in a similar boat, and maybe eye opening/educational for anyone else reading and keeping up with this blog. I have to remind myself of how far I’ve come and although 8 months has passed since I received my magic cells, which at times has felt like an eternity, I am still classed as early into the road to recovery for a stem cell transplant. Since being home I have had two bone marrow biopsies, both coming back with comforting results of a disease free marrow. My next one is next month and will be my 9 month biopsy. These biopsies come hand in hand with anxiety and I know a lot of patients really struggle with them. All I can say is so far so good, long may that continue. I have to say it is not all bad, for now I am getting out walking lots, running (trotting) very short distances when my wasted steroids legs allow, catching up with my wonderful friends, eating very well, dipping back into the outside world as much as I’m allowed, and this past week started discussions to get back to work in some capacity, which I am very excited about. Doing something that isn’t related to hospital or treatments, and using my brain again will hopefully be refreshing and therapeutic. I had a lovely christmas with my wonderful family, and have some very thin baby like hair on my head. Next month I turn 30 and I can’t wait, some people may not be happy to celebrate this milestone, but I can honestly say I will always be happy to hit each year I am blessed with!!

It has been a slow road to this point, and though there have been a lot of negatives stated in this post, I feel extremely fortunate about the stem cell transplant, side effects and all, because without which I may not be here today and that is the main thing! So mostly I try to ‘keep my head up and heart strong’ and keep putting one foot in front of the other…
​
Lots of love, Alex (Mrs Potato Head) xx
​

Subscribe to Alex's blog and follow her story by clicking here

Do you know someone who has been affected by acute leukaemia? 
​Would you like to share your story with us? If so, get in touch here.


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