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The words hit me like a bolt between the eyes and 7th July 2009 will never be forgotten. My head started to swim and I was fighting desperately to stay calm(ish) so I could ask what I hoped were sensible questions. There would be time enough to fall apart later but now I had to focus and hold on.
Everything up to that point had happened by chance. I had been to see a consultant about an unrelated matter and whilst examining me he had noticed a purplish rash on my chest. Before I left he asked me if I had been feeling especially tired – I hadn’t. He then suggested a baseline blood check “just for his records”. It all seemed quite innocent and I went back to work, unconcerned.
An hour or so later my life started to slowly unravel when I was told my white cell count was virtually non-existent and I was referred to a haematologist for more tests.
Alarm bells should have been ringing loud and clear but I felt fine. Further blood tests were inconclusive and so a bone marrow test was performed. The results were due after the weekend and when I received a message on my mobile suggesting I bring someone with me I did start to panic. As a medical secretary working in oncology it was obvious things were worse than I first thought.
The consultation brought a diagnosis I hadn’t even considered. I asked questions and tried hard to listen to the answers but at the same time my head with buzzing with other thoughts. Acute myeloid leukaemia. What was that? Where had it come from? Questions circled in my brain and I tried to listen to the answers.
Things moved fast. I was admitted to an isolation room for treatment the following afternoon and chemotherapy was scheduled to start the following day. Fortunately, I didn’t know then that it would be four months before I was discharged home.
Without friends, neighbours and near strangers I don’t know how we would have coped. Most of all, my mother was fantastic and unfailing in her support, something for which I will be forever grateful.
The leukaemia did not respond to the first lot of chemotherapy. Medical staff had been so positive that things were going well, so I was devastated when the bone marrow test showed the leukaemia was still there. More chemo was to follow and I was filled with dread as the side effects had not been easy the first time and now my body was even weaker.
The next few weeks were filled with highs, lows and to be honest some very dark times. Infections, sepsis and feelings of depression took over and the nights were the worst. I just needed to get well enough to go home and ready myself for the next part of the journey – a possible stem cell transplant.
Feeling weak, low in spirits (and totally bald – not a great look!) I finally made it back home clutching a large bag of medication and in the knowledge that I had a referral to The Royal Marsden at Sutton.
When the day of the appointment came, not only did the walk to the department feel like a million miles but I experienced a full blown panic attack! I felt so embarrassed and despite everyone’s assurances and kindness, it was a scary moment.
The consultant, Dr. Mark Ethell, discussed why he thought I should have the transplant. As the first chemotherapy had failed, a stem transplant would hopefully increase my chances of survival. It was difficult to take everything in but it seemed positive and I had every confidence in the consultant which was the main thing. Six weeks after this consultation a fully matched unrelated donor was found – I was incredibly lucky. It all seemed too quick but in retrospect, this was a good thing as I didn’t have to wait too long and we managed to have Christmas and the New Year at home. A mixture of joy, tempered with bittersweet thoughts and tears on New Year’s Eve.
I was admitted to the Royal Marsden on 4th January 2010. And the transplant went ahead as planned. A few dismal days having antibiotics via a nebuliser and the usual side effects associated with chemotherapy followed, but amazingly, I was discharged four weeks later.
The rest of the year was taken up with outpatient appointments, numerous blood tests, medication and a skin GVHD (graft versus host disease). I had already lost weight but a couple of months later the pounds seemed to drop off me. This was something which I would normally have rejoiced in having struggled with my weight over the years. However the skeletal appearance, wrinkled baggy skin, rash and no hair were not a pretty sight!
By August things were starting to look up. The regular appointments provided reassurance and I even made new friends. My medication was adjusted and once the immunosupressants were no longer needed my hair started to grow and weight crept back on. Also, my mother and I were able to take a short break to Jersey, which did me the world of good.
It certainly isn’t all negative. I have had wonderful support medically, from my brilliant mother, friends old and new and even virtual strangers. Strangely, I feel happier and more at ease with myself. I have started to paint again and I enjoy what life brings me. Some very good things came out of a difficult, and at times, frightening experience and now I just have to take life as it comes.
I am back at work part-time, and apart from the shingles in 2012, I feel healthier than I have done for years (in retrospect!) so its “fingers-crossed” for the future and a very BIG thank you to my donor (who came via the Anthony Nolan register), The Royal Marsden and Leukaemia Care whose website provided me with a wealth of information on AML, which was invaluable to me at a time when there was so much to take in.