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To say that I was surprised when I was diagnosed as having smouldering myeloma would be an understatement. I was 57 years old at the time and had not had any relevant symptoms. I was physically fit and had been working in the NHS for 38 years; last 23 in the Haematology and Blood Transfusion department in Hastings.
I was very fit for my age, running several times a week, sometimes up to full marathon distance. After initially visiting my GP for investigation of some gastric symptoms, further tests revealed the presence of a paraprotein and after a full skeletal survey and bone marrow examination, smouldering myeloma was diagnosed.
The diagnosis was difficult to accept at first, as I felt so fit and well. My first reaction was, “why me?” But then I thought, “why not me?” I was in the prime of my life with many hopes and ambitions still to be fulfilled. I did not have the time to be unwell and was determined from the outset that I was not going to change my life or put off anything unless I was forced to do so.
It was initially decided that I should follow a watch and wait approach, having no active treatment. For the next nine years I led a normal life whilst having check ups and examinations every three months. As the paraprotein level increased I slowly became more anaemic meaning running became more difficult. But other than that, I still had no other symptoms.
Almost nine years after diagnosis, it was decided that treatment was required. I
started on chemotherapy with a view to an autologous (own cells) stem cell transplant. The chemotherapy was an inconvenience more than anything. I suffered with insomnia and some visual disturbance but I was still able to keep fairly active with short runs and walking.
I was referred to King’s College Hospital (KCH) for the stem cell transplant programme and the initial interview with the team was rather daunting as the details and risks of stem cell harvest and transplant were explained in great depth.
On completion of the chemotherapy, the next step was stem cell harvesting. The actual harvesting of the stem cells was not unpleasant, just a little tedious as it was necessary to be connected to a machine for six hours on two consecutive days.
I was admitted to the transplant ward at KCH just before Christmas where I was re-infused with my stem cells. I had been warned of all the side effects that I might experience; but I was fortunate. I was nauseous and lost my appetite for a few days. Although I had a dry mouth, it did not develop into the expected soreness or any infection.
The staff at KCH were wonderful and I really felt as though I was being treated as a person. The ward had wifi which enabled me to maintain contact with family and friends using my laptop – a real comfort when in isolation. The staff made my wife very welcome when she travelled three hours each way for her daily visits, although she often had to sit and watch me sleeping.
Christmas and New Year passed as I waited for my blood count to rise. Being confined in isolation was not as bad as I had anticipated. I had been told to expect to remain in my isolated room for four to six weeks but I was discharged in three. My fitness level had contributed to my speed of recovery but I did have to follow a clean diet and avoid crowds as my immunity was to remain compromised for some weeks.
The day after returning home we went for a short walk on the Hastings sea front and afterwards I felt exhausted. But we continued to walk most days, gradually increasing the distance. After six weeks I started to run a little and by the time I returned to KCH for my three month check up I was off all medication and able to run five miles.
I was not so naïve as to think that I had been cured. I remained positive about the future, not only for myself but also for all the other people who are diagnosed with myeloma.
I was having regular check ups at my local hospital and also at KCH. My paraprotein level was slowly climbing and early in 2012 it was decided that I needed further treatment and was entered on the Myeloma 10 clinical trial. All went well until the final cycle when I developed a neuropathy (nerve damage) meaning I had to stop treatment. Recovery was slow and to this day I have some residual neuropathy in my lower legs and feet. The remaining neuropathy has not had a great impact on my life and I have continued to keep as active as possible. Following this course of treatment I took no medication for the next two and a half years. The paraprotein level did slowly rise again and early in 2014 I was put back on to a less aggressive chemotherapy regime and did not interfere too much with a normal life. On completion of this, it was decided that I should remain on a maintenance dose of the chemotherapy, which is where I am at currently.
It is now fifteen and a half years since I was first diagnosed. I have had three courses of chemotherapy and a stem cell transplant. I still have stem cells in storage in case it is decided that a second transplant is indicated although this is less likely now due to advances in treatment, and also my age, now 73! Although some of the treatments have been inconvenient my lifestyle in between has been pretty normal.
The support I received throughout my treatment from my wife, family, friends, the team at KCH and staff at the hospital in Hastings is gratefully acknowledged and will never be forgotten.