Wednesday, 31 July 2013

Time for an update.

Hi everyone,

I can't believe how long it is since I last updated my blog, but the last 7 months has been a bit of a rollercoaster and has had several ups and many downs. It is not a period of time I ever wish to repeat but thankfully, despite how tough it's been, I have made it through and survived everything that has been thrown at me.

The big news, for anyone that hasn't heard, is that I am now in full remission from the Leukaemia and the tests I've had recently show that there are now signs of the disease even down to a molecular level. Thankfully all I have been through has been worthwhile.

When I last wrote I was about to embark on the transplant process, so in this blog update I'll spill the beans on everything that has happened since my readmission to hospital and how I've got to where I am today having beaten the disease, so this is going to be a lengthy post!

After I was admitted to the bone marrow unit on the 2nd January, I had a Hickman line fitted the following day, which made the administration of drugs and chemotherapy, and the taking of blood samples much simpler. It also got rid of the need to continually have cannulas inserted and was more reliable than the PICC line I'd had in my arm previously.

The first few days in hospital consisted of a progressively harsher course of chemotherapy drugs to effectively knock out my immune system and make room in my bone marrow for the new cells to be transplanted. Initially there were no ill effects from the treatment but things were about to get a lot tougher. This course of treatment also finished off my hair loss, and with the exception of my eyebrows, I now lost all of the hair on my body and head!

The transplant itself happened on the 10th January as planned and was more straightforward than I ever imagined. The cells came in the form of two bags, similar to those that had been used previously for blood transfusions and were delivered through the Hickman line over the course of about 3 hours late in the evening. By midnight it was all over and the new cells were circulating in my blood stream ready to find their way into my bone marrow and go to work. The photo below shows one of the bags of donor cells being transfused into me.

For the next couple of days I felt OK but soon after, the effect of the pre-transplant chemotherapy drugs kicked in with a vengeance. I was sick frequently and the contents of my bowels had the consistency of water! I ended up having to have a commode chair at the side of my bed as the frequent need to get to the toilet fast was overwhelming. I'll spare the gory details as I'm sure you can all probably imagine for yourselves.

The sickness and runny bum lasted for a couple of weeks and I became progressively weaker. Even standing long enough to be weighed on the scales in my room was difficult and I found myself feeling light headed if I stood for any longer than 30 seconds.

I've lost track of all the dates, but after the transplant I was probably in hospital for about 3-4 weeks, by which time my blood counts were starting to increase to a level that the medical team could think about letting me go home to continue my recovery.

I was discharged on a Friday evening and looking forward to going home to be with Andrea and the boys. My parents were also visiting that weekend. Unfortunately at the time I was starting to develop a fungal infection on my tongue which worsened over the weekend, making my mouth and my tongue in particular painfully sore.

I had a follow up appointment on the Monday and when they saw the state of my tongue, which was then white with the fungal infection, I was promptly readmitted to the room I'd left only a couple of days before.

This was probably the lowest point I'd been at throughout my treatment. When I was discharged before the weekend it had felt like I was making good progress after my transplant and things were on the up. Now, being brought back into hospital was a real blow and I felt like I'd taken a huge step backwards.

Over the next few days I was unable to eat due to the pain in my mouth and my tongue became even worse, with cracks and sores appearing all over it which made eating impossible and talking very difficult. Despite a rigorous routine of four different mouthwashes four times a day and anti-biotics, very little improvement was made against the infection and my weight dropped dramatically through a lack of nutrition.

The nursing staff became really worried about my demeanour as I appeared quite depressed to them, though I didn't realise it myself. Eventually they convinced me to let them refer me to a psychologist to discuss my feelings. A couple of days later the psychologist came to see me, by which time the pain in my mouth had started to ease and I was beginning to feel a little better. We had a good chat and I think she was satisfied by the end that I was indeed feeling better than I had.

A few days later I was discharged once again and resumed the slow process of recovering at home.

Much of my time was spent in bed as I was too weak to get up and make the journey downstairs, though occasionally I did manage and spent the day laid on the sofa, watching TV and sleeping. I survived at this time mainly on soups, tinned spaghetti and supplementary nutritional milk shakes. Slowly my appetite started to come back, as did my strength.

Hospital check ups consisted of a weekly visit to the bone marrow day unit for blood tests and a discussion with the consultant. Due to being so weak, Andrea had to drive me to hospital each week and drag me to the clinic in a wheelchair as I couldn't walk such a distance initially.

I did manage to regain enough strength after a few weeks and felt that I'd reached a big milestone when I was eventually strong enough to walk from the car park to the clinic, taking a couple of rests along the way.

Just as things were starting to improve I was struck with another blow when I picked up an influenza bug, which knocked my appetite once more and sapped my strength. Once more I wasn't eating and struggling to keep anything I did eat down. The strength I'd regained quickly vanished and my weight dropped dramatically.

This state seemed to last for weeks with no significant improvement. I got weaker all the time until things came to a head during one of my weekly visits to hospital. In the clinic the nurses had completed my observations, taking my blood pressure, checking my pulse, saturation levels and temperature. I was taken to be weighed, which involved sitting in a weighing chair. I remember the nurse starting to record my weight, then the next thing I remember I was laid on the floor surrounded by consultants and nursing staff with an oxygen mask being placed over my face. I'd collapsed in the chair and had been lowered to the floor by the nurses.

This now showed just how weak I'd become and unsurprisingly I was admitted to be kept overnight for observations. I spent the afternoon in the oncology assessment unit before being moved to the haematology ward where I'd spent much of my time during my treatment before Christmas. The following morning I was taken in a wheelchair by a porter for a chest x-ray. After the events of the previous day I warned the radiographer that I couldn't stand for long and sure enough after being stood in front of the chest stand for a few moments I started to feel light headed and had to sit down. Unfortunately the radiographer sat me sideways in a chair in front of the chest stand in the hope of still being able to get the x-ray.

With no support behind me, the next thing I remember was coming round, laid on the floor again with a very painful lump on the back of my head. I'd collapsed again and as I fell this time I hadn't had the luxury of being lowered to the floor and had crashed hard, banging the back of my head hard on the terrazzo floor of the x-ray room. Panic ensued as staff rushed to my aid and I was eventually helped back to my feet and onto a trolley where they finally managed to get the required x-ray.

As a consequence of my collapses, I ended up spending the whole week in the hospital, during which time I was also taken for an MRI scan of my head, and had a 24 hour ECG trace to record the performance of my heart. Neither showed any abnormalities so thankfully the reason for me collapsing wasn't down to my brain or my heart. The conclusion was reached that it was down to my general lack of strength which was a consequence of not eating properly and not getting any exercise.

Once again I returned home to continue my recovery but still struggled with my appetite and had difficulty keeping any nourishment down for any length of time.

Weeks passed and the weekly visits to the hospital continued, thankfully without any further episodes of collapsing. As time went on my skin also became very dry and flaky, particularly on my face. Despite this the results from my blood tests each week showed promising signs that the transplant was working and that the new cells were 'grafting' themselves into my system.

To counteract the dry skin I was applying a moisturiser to the affected areas but unwittingly, one day, I applied some to my face which it turned out, subsequently irritated my eyes. The following day I woke with a tremendous pain in my eyes and couldn't open them. When I eventually did manage to prise them open, my vision was severely blurred.

Fortunately I was due to attend hospital that day for my weekly visit. As Andrea drove me there it was a very bright sunny day, but due to the pain in my eyes I spent the journey with my eyes closed and a woolly hat pulled down over them to block out the brightness of the sun. We checked in to the bone marrow day unit where we told them about my eyes and they immediately made arrangements for me to go downstairs to the eye clinic and be seen straight away.

I was still unable to open my eyes until one of the nurses in the eye clinic dropped some local anaesthetic into my eyes. The pain subsided almost immediately and I was finally able to open my eyes but my vision was still very blurred. They examined my eyes and found that the surface was badly scratched in both eyes. I must have been rubbing them overnight due to the irritation after using the moisturiser. I was prescribed some ointments for my eyes and thankfully the following day my sight started to return and was back to normal within a couple of days.

Of all the senses, I can now imagine that losing your sight has to be possibly the worst. Not being able to see leaves you feeling totally helpless and dependant on others. For 24 hours at least I truly panicked, feeling that having defeated the Leukaemia I was now destined to go blind. Thankfully it wasn't the case but my heart really does go out to those that are unfortunate enough to lose their sight..

By now it was mid May, and as a result of my skin condition, the consultants decided I had a form of 'graft versus host disease' (GvHD) which is in effect my old cells fighting against the new ones. Consequently they prescribed a heavy dose of steroids to try and combat the GvHD. I have to say that the steroids are probably what really kick started my recovery and within a couple of days of starting the medication, my appetite began to return properly and I started to regain some strength.

Within a week of starting the steroids I managed to gain 4 Kg in weight and was able to start exercising more, though I was still very weak. I had a new found determination to regain my fitness and arranged the loan of a wheelchair from the British Red Cross. My theory was that I could go for short walks, pushing the wheelchair which would aid my balance, and that if I got tired I had a ready made seat to hand.

In the end my strength came back so rapidly that I only actually used the wheelchair a couple of times and within 2 weeks returned it to the Red Cross. Since then my strength has continued to progress and my appetite remains. As my skin condition slowly improved, the dose of steroids was reduced and I now remain on a low dosage. Thankfully my appetite has stayed and I am now eating more or less normally. My walks have increased in distance and now I don't have to give a second thought to walking anywhere whilst out, even to the degree that I walk every night with Andrea and the dog round our local country park. At the time though the transformation thanks to the steroids was unbelievably rapid and just the boost I needed.

Not long into my course of steroids I went to hospital for another bone marrow biopsy. This would show whether there was any sign of Leukaemia and give an indication of the proportion of new donor cells to my old ones. By now I was also able to drive myself to hospital after not driving for a period of some six months. It took a little while to get used to driving again, accompanied by Andrea, until I was confident enough to make the journey to hospital alone.

Within a couple of weeks the results of the biopsy came back and on the 22nd May I got confirmation that I was in remission with no sign of the Leukaemia. Further good news came on the 5th June when I was told that my bone marrow was now 100% donor.

My treatment continues in the form of daily medication, largely anti-rejection drugs and immuno-suppressants, together with a low dose of steroids. Every 3 months for the next two years I have to have a lumbar puncture and have chemotherapy injected into my spine to make sure my central nervous system stays clear.

Following a consultation last week at Nottingham City Hospital, I am also about to commence a  course of treatment called Extracorporeal Photophoresis (ECP). This involves being connected to a machine for three hours per day, two days per week, every two weeks, initially for sixteen weeks. The machine takes blood from a vein in one arm, separates the white and red cells, mixes the white cells with a UV sensitive chemical and exposes them to UV light. The red and white cells are then returned to me via a vein in the other arm. The theory is that this treatment kills off the bad white cells that are causing my GvHD and over the course of the treatment my body recognises what is going on and attacks the remaining bad cells. This should hopefully resolve my GvHD and my skin conditions should improve.

In the meantime I have been making moves towards easing back into working life. Due to my on-going treatment and immuno-suppression, there are restrictions on what I can currently do and these mean that at the moment I am unable to return fully to work, particularly on a live construction site as I had been prior to my illness. I am therefore hoping to work from home and assist with some of the bids to win new work.

Slowly but surely I finally feel like my life is returning to normal and whilst I will continue to be under the control of the medical team for some time (and no doubt remain so for the rest of my life), the frequency of my check ups will reduce, as will the medication I'm on, allowing me to return to as normal a life as it can be.

With my health improved my thoughts are now turning back to my plans to walk up Snowdon in aid of Leukaemia and Lymphoma Research. Over the next couple of weeks I'll be approaching those that have previously shown an interest in joining me, and anyone else who's interested in tagging along with a view to finalising arrangements for the walk. My target is to complete it by the end of September, which would take me to just over a year from first being diagnosed. if you want to join me on the walk, please let me know.

I'll write again as plans come together for the walk, but for now, thanks for reading.


1 comment:

  1. Fantastic news on your long but very positive recovery Steve. Keep us all updated on your plans for the walk. Looking forward to working with you on a bid again soon!!
    Rachel Blagg


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