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Providing support to anyone affected by blood cancer
I was in my late fifties, a mother of four grown-up children and apart from being on the Severely Sight Impaired Register due to a deteriorating eye condition and carrying a few more pounds than perhaps I should, all was going well. I was on the waiting list for my first guide dog and looking to get out more as I had lost confidence going out alone.
My myeloma journey started when I began to suffer with constant backache, so a visit to my GP was needed. I had first suffered backache a number of years ago when painkillers and some physiotherapy were prescribed. But when it returned my doctor ordered some blood tests. She said the results showed some high readings and although not too concerned was recommending me to a haematological consultant to rule out any chance of a blood cancer called myeloma being the cause.
The consultant told me that I had early symptoms of myeloma. It was a shock. Until three weeks before, I had never even heard of myeloma but I had certainly heard of cancer and it wasn’t ever going to be on my shopping list. My consultant explained the different treatments available and apart from monthly infusions of pamidronate - a bone strengthener - and regular blood tests, I carried on as normal.
I got the good news in January 2011 that I had been matched with my gorgeous guide dog, Finigan, and I would have to go away with him for training. It was a happy time when we passed with flying colours three weeks later.
Unfortunately, my paraprotiens were gradually rising and by March my consultant and his team decided it was necessary to start chemotherapy. If the prospect was daunting, then so was the reality. I picked up a carrier bag full of drugs from the hospital pharmacy and lots of instructions on how and when to take each drug, quite bewildering. When I got home, my son, Greg mapped my drug regime onto a spread sheet and ‘all’ I had to do was follow it religiously.
After my first 21-day cycle of chemo it was a downer to learn another five cycles would follow in quick succession. I soon felt quite sick. The dexamethasone affected me badly, particularly my sleep pattern, so these were reduced. I felt really ill on the days of the cyclophosphamide and metoclopramide and it wasn’t long before my hair started to thin badly. As I finished the last cycle of chemo, my only daughter got married a few days later. I was so pleased to be able to attend but I’m afraid It was all rather a blur and I attended more in spirit than as mother of the bride!
The chemo did its job and reduced my paraproteins to a very respectable low count. I thought it was job done but (there always seems to be a but), this is exactly what was required if I was to have a stem cell transplant. In an overnight stay in hospital I had my stem cells harvested the week of my 59th birthday. A month later, I went into the Royal Liverpool Hospital for my autologous (where the patient’s own stem cells are collected and transplanted) stem cell transplant with high dose chemo. I had all the side effects that I had been promised including diarrhoea, sickness and a very sore mouth. The nurses were marvellous, constantly monitoring the changes in my condition and altering the treatments accordingly. By this time most of my hair had fallen out but a nurse shaved off the rest for me. On the plus side I got a snazzy red wig and my husband said I had a lovely shaped head even without it! After three weeks I was allowed home, which after all the care and attention I had received in hospital was daunting as my reduced immune system would have to cope with any infections awaiting me outside.
Since then I’ve had two short doses of radiotherapy, one to my collarbone and another not so successfully to my hip. Three years on from my transplant I still have a lot of pain and am always very tired as I sleep very badly at night. Apart from a slight rise in paraprotein levels recently, my consultant and her team are very pleased and continue to monitor me with regular blood tests.
I am very grateful for all the superb care I have received; from the speed of my GP picking up on the signs of my myeloma, to all the staff at the different hospitals during my various stages of treatment. While the consultants and their team explain the disease and treatment pathway you are likely to take, it is only meeting and speaking to those already on that path that you really begin to understand your situation.
It was so helpful to have a local blood cancer support group, ran by Leukaemia CARE, to give me a reassuring shoulder to lean on. The support group is independent of the hospital and attracts a large membership of patients and carers. Because of the dedication, hard work and charisma of chairperson and facilitator Linda Boyne, it is amazing that specialist nurses, pharmacists, doctors, consultants, professors, researchers and even the CEO of the entire hospital regularly travel to attend in their own time and have a genuine concern for the welfare of their patients and to the battle to defeat myeloma and all blood cancers. The group has helped me enormously and I hope by passing on my experiences I too can help others come to terms with myeloma.