The charity Myeloma UK, established in 1997, organises ‘Myeloma Awareness Week’ every year to raise awareness of the disease. The charity’s work supports patients and their families; informs doctors and GPs; helps train nurses; campaigns for access to treatments for all who need them and funds research into better treatments and ultimately into preventative or curative strategies.
When I went to see my doctor in June 2006, I had not heard of Myeloma. 1 was feeling tired, and had muscles that ached when canoeing and walking that hadn’t ached before. I thought myself fit; I paddled regularly and walked the ‘Tour de Trigs’ in 2005. Suspecting I was anaemic, my GP arranged blood tests but was not expecting the call from the consultant haema-tologist at the Horton Hospital to see if I needed hospitalisation because my haemoglobin levels were so low! An appointment was made for me to see the consultant within the week. More tests followed, including a painful bone marrow biopsy, and I went back a week later with my husband, to have a diagnosis of Myeloma confirmed.
In the meantime, I had done some research into Myeloma. I found the Myeloma UK website (www.myelomaonline.org.uk) really useful, but when I read it was a rare disease (about 4000 cases are diagnosed in the UK each year), of older people (most commonly diagnosed in those in their 70s), that affects more men than women and more black people than white, I felt particularly hard done by. 1 was white, female and not yet 48!
The basic facts: Myeloma is a cancer of plasma cells, the causes unknown. Plasma cells, found in bone marrow, form part of the body’s immune system. In Myeloma, a single defective plasma cell (a Myeloma cell) multiplies rapidly and displaces healthy bone marrow. The symptoms include bone pain, bone fractures, higher risk of infections and fatigue, often associated with anaemia. The cancer is treatable but as yet there is no cure. Within a few weeks I had started a course of chemotherapy to reduce the number of Myeloma cells in my blood. I was fitted with an ‘intravenous line’ and nursing staff at the Brodey Centre, at the Horton (who always provided an excellent service and support) fitted a bag, containing a cocktail of chemotherapy drugs, under pressure. This infused over 4 days, during which time I wore the bag in a little bum-bag and was free to lead a normal life. I managed to continue to work throughout four cycles of treatment, although I did get progressively more tired. My 19 year old son christened the drug mixture my ‘pink gin’ due to its bright pink colouring!
At the end of this initial chemotherapy, I went through another process to enable ‘stem cells’ to be collected from my own blood. This took place over two days as an out patient at the National Blood Service Centre at the John Radcliffe. I then had a short break from treatment, to allow a little bit of a recovery, before being admitted to the JR haematology ward just before Christmas 2006. I had one treatment of ‘high dose’ chemotherapy and the following day the collected blood stem cells were returned to my body, in the form of a transfusion. This procedure is regularly carried out at the JR for patients with Myeloma and other cancers such as lymphoma, but does carry some risk. Infections
are the biggest one, as the high dose chemotherapy kills off the remaining bone marrow. This knocks out the remains of the immune system and can also lead to internal bleeding, as the blood platelets, important in blood clotting, are also depleted. In addition the chemotherapy drugs have unpleasant side effects, causing nausea and sore mouth.

I was not in total isolation for this treatment, but was nursed in my own room and visitors were restricted to those who were free from obvious infection. Even so, I did get a chest infection requiring intravenous antibiotics. I was released from hospital when blood cell counts started to show the stem cells were beginning to work and producing new blood cells. I was in hospital over for just over three weeks. When I came home, I was still at risk of infection, had to take great care with hygiene and eat a ‘clean’ diet, ie free from foods likely to cause stomach upset. The slightest exertion, like getting out of bed and getting dressed, required me to sit down and take a rest.
However, taking one day at a time, and having great support from all my family and friends, I made a steady recovery. By March, with the Myeloma in remission, I was ready to go back to work on a part time basis and by April, on a weeks holiday to the Lake District, I managed to walk to the top of Old Man of Coniston! I started to do some kayak paddling again, something I had given up right at the start of my treatment because of infection risks, and in June, for Myeloma Awareness Week 2007,1 undertook a 4 mile sponsored paddle in aid of Myeloma UK. I was tremendously encouraged by this event as I managed to raise over £1200. This year, with my Myeloma showing early signs of returning, I am planning to hold a charity ball to raise more funds for Myeloma UK. The event will coincide with my 50* birthday in October. If any reader of this article would like to support the event in any way; buy tickets, donate a raffle prize etc. please do contact me now. Sponsored Myeloma Hilary Thomas.