The Voices of Patients and Carers
I was diagnosed with multiple myeloma at the end of February 2014. Before I was diagnosed, I had never heard of myeloma and so when the consultants told me, I had no idea what it was. I was told that going through the treatment for myeloma would be a long-term process, involving chemotherapy, perhaps radiotherapy, and possibly a stem cell transplant and my first thoughts were for work, and how we were going to survive financially as a family, and pay the mortgage. It was clear to me that life was going to change considerably and I was in a panic almost. Since the diagnosis however, and having gone through treatments which included a nine-hour operation to repair damage to my vertebrae, and a stem cell transplant in October 2014, I am almost back to the same level of fitness and health that I had before the whole thing started. On a daily basis, I have some problems turning around because of the operation on my neck but I am very fortunate in not having many side effects from the actual myeloma. The myeloma doesn’t stop me doing anything. It doesn’t impact on life at all. The only real reminders are the regular hospital visits and the maintenance dose of Lenolidomide that I am taking on daily basis as part of the Myeloma 11 Clinical Trial.
The Basil Skyers Myeloma Foundation was mentioned to me by the hospital at a time when I was so worried about the practical and financial side of things and we were offered some support. I think it is important to get across how much of a relief it was to feel that someone cared and I cannot stress this enough. It is not easy on a day-to-day basis because of the uncertainty.
I was diagnosed in 2009, aged 46 after having a series of illnesses and infections since at least 2007. I was eventually admitted to hospital with a gall bladder infection, and ended up having it removed. After that, the doctors told me that I had a very low blood count and I was given a blood transfusion. Before being discharged, I was told to go to my GP after six weeks and to ask for a blood test to check that my blood levels were back to normal. I had the blood test but my blood counts failed to come back up, so my GP said he would do a thyroid test. I mentioned to my GP that my hair was very dry and brittle, rather like straw, and that it was falling out. I was also losing weight but that suited me fine, as I didn’t attribute my weight loss to anything negative. In my vanity, it was my hair that I was most concerned about. The thyroid test came back negative and my GP told me he was unhappy and that he wanted to get to the bottom of why the blood counts were so low.
My GP referred me to a consultant haemato-oncologist at St George’s Hospital and I was given a bone marrow biopsy. The hospital called me back a week later and as I sat in the reception, there were whispers between the nurse and the reception staff, and lots of comings and goings. I was then called in to see the consultant and a nurse was there. That was when I was told that I had multiple myeloma but hearing it, it didn’t ring true because I didn’t know what he was talking about. I had never heard of multiple myeloma. I had a notepad and pen and kept asking questions, and in hindsight, I think they were rather surprised that I was not more upset. The consultant said that he wanted to start me on chemotherapy the next day and that was when it hit me. It never dawned on me that I had cancer. I never, ever thought it was cancer. It never ever crossed my mind that it would be that. When I was diagnosed my initial prognosis was six months, because of the severity of the myeloma and the extraordinarily high levels of paraprotein in my body. I am now five years post-transplant, which is a huge success, any way you choose to measure it. I lead a very active and a very full life. I have learned to play the cello and I have reached Grade 2. This is coupled with all the joys of bringing up my daughter, who has gone to university this year.
My husband, Wyn was diagnosed with multiple myeloma on New Year’s eve 1996. He was 48. He had been ill on and off for 4 months with very bad back pain and sickness.
Since my husband was diagnosed, I now know that there are many more treatments available which is so heartening. As a former carer for my husband Wyn 20 years ago, I would have valued the support of The Basil Skyers Myeloma Foundation. When Wyn was diagnosed I experienced profound isolation and bewilderment because of the nature of the disease. It would have been comforting to know that a charity like the Foundation was there for me. I have a real interest in the work of the charity and I really appreciate the information on the charity website and the way we are kept informed about activities, and about what is happening through emails, tweets, events and so forth. I am also thrilled that the Foundation is looking at the experiences of communities who are most at risk as it is clear to me that this has the potential to bring immense benefits for patients as a whole. I think any organisation that can achieve what the Foundation has achieved in the short time of its existence is doing a fabulous job. It is outstanding compared with what was available ten years ago. I think it really builds the confidence of carers as much as individuals with multiple myeloma. I am very actively involved at a community level with its work and I will continue to give the charity as much support as I am able to. All I can think of is praise for it and what it has achieved.
What you told us
‘It has been very helpful to me for my taxi fares. I live quite a way from the hospital and if I use the bus I have a very long walk up a hill and I get very breathless and I get bone pain. A round trip in a taxi costs me £16 so if you times that by three every week, it works out very expensive. The charity has been a very big help’ (Patient).
‘Thank you for your committed grant of £250 towards a wheelchair for me as this will open up a new quality of life for me in that my daughters will now be able to take me into town and to parks, and rather than just having to sit in the car, I will now be able to get around. It will make such a positive improvement to my life’ (Patient).
‘The grant was a very big help to me as my husband had a stroke four and a half years ago and it left him without movement down one side, I had to have carers in whilst I was in hospital having my stem cell transplant and the grant was a big help in meeting the costs of that’ (Patient).