My name is Kes Grant, I am 53, and I have lived with myelodysplastic syndrome (MDS) for many years.
I remember in my early 20s being told I had large red cells. The GP wondered if I was drinking too much, which I wasn’t. I had iron deficiency anaemia (IDA) in 1994 with large cells too.
I was playing football for Charlton Women’s Football Club and noticed I was getting breathless. I also felt tired and had some unexplained bruising. However, it was a few months before I went to the GP as I put it down to working too hard.
My GP rang me at work to say my blood test needed to be repeated as it had shown some abnormalities. The second test also showed abnormalities, so I was called in to see the GP. I was initially sent to an endocrinologist due to strange results. I had a brain scan as they thought I had a pituitary tumour.
After two years without a clear picture, I was then sent to a haematologist due to a consistent low-grade anaemia. He did a biopsy and gave me a preliminary diagnosis of MDS. After another two years, I was sent to a Centre of Excellence who conclusively diagnosed me.
Once I was conclusively diagnosed I was put on “Watch and Wait” or “active monitoring”. This went on for a few years, but I seemed to not be conforming to the typical picture of MDS. For many years it was mainly my red cells that were a problem and I would also at times lose all my ferritin, which required me to have ferritin infusions. Then out of the blue I became neutropenic. This responded well to a granulocyte-colony stimulating factor (GCSF), which is a drug that stimulates your bone marrow to produce more white cells which are needed to prevent infection. The strange thing was I would trundle along with relatively okay blood counts. Then it seemed my body dumped my cells and I would become pancytopenic, and then after treatment or a bout of sepsis and an inpatient stay, I would bounce back. I seemed to be greatly perplexing the team looking after me.
Over time I started to have problems with my muscles and joints. My mobility became more and more restricted and my shoulders completely stiffened up making everyday life hard. It was then thought that I had developed an autoimmune aspect to my MDS.
Gradually things became worse and worse. I have had sepsis 10 times and septic shock once, which landed me in intensive care. The scary thing was I was in Mallorca at the time and didn’t speak the language. My poor family were told I was going into organ failure and might not make it. Fortunately, the Spanish health system is good and they saved my life.
By now I was needing regular platelet and blood transfusions and at times my neutrophils would drop to 0.01. This was very dangerous, and I had lots of opportunistic infections. Eventually it was decided that I needed to have a stem cell transplant as there was a real risk of my dying from one of these bouts of sepsis.
Sadly, there was no match for me on any of the registers due to a rare abnormality in my make-up. My sister came forward to be tested. We were warned there is only a 1 in 4 chance of any sibling being a match. Luck was on our side and Gail proved to be a 10/10 match. I had the transplant in October 2016.
Things have not run smoothly for me since the transplant. I have developed extensive graft versus host disease (GVHD). This is a process where Gail’s cells are attacking my cells and this in turn causes inflammation. I have GVHD in my liver, gut, eyes, mouth, lungs, muscles and joints. To treat this, I receive extracorporeal photopheresis (ECP). I have ECP for two consecutive days every two weeks. During a session, which lasts about two to three hours, my blood is taken out of me and filtered to separate out the white cells. Once enough of them have been collected they then inject them with a chemo drug and pass them through an ultraviolet light. Then they give them back to me. This process dampens down their response. It’s certainly not a quick fix. I’ve been told I may need this treatment for two years due to the extensive nature of my GVHD. Alongside the ECP, I also take lots of steroids and I’m still taking high dose immunosuppression. That means I also need to take a whole host of other drugs to keep me safe like antibiotics, antifungal and antiviral medication to name but a few.
My latest bone marrow biopsy has shown that I still have dysplastic cells and my marrow is also hypocellular; in other words, not enough cells in it. This could be because I’m still taking toxic medicine, or it could be indicative of relapse. Time will tell, and my team are keeping a close eye on me.
When I was first diagnosed I had nowhere to turn. MDS is a rare blood cancer and at that point, there was no patient support group. There was also limited info on the web that was of a good quality. These days there is a brilliant MDS UK patient support group and a very active Facebook group of people living and working through various stages of MDS. I would encourage anyone in a similar position to get in contact with the support group to request an information pack. If you also want to connect to other patients this can be done via the web and online forums or social media. I have found it to be an invaluable source of support. This was especially true when I was stranded in Mallorca. There is also Leukaemia Care and Anthony Nolan who offer support.
Something I consider vital is to encourage everyone to ask for a referral to a Centre of Excellence. These cancers are rare and the staff at these centres have shown me over and over again that their expertise is invaluable. I have shared care with my local hospital as well as the Centre for Excellence. This works really well for me. Don’t be shy to ask for this and never be afraid to ask questions. In my book there is no such thing as a stupid question.
When you are first diagnosed it’s scary. Don’t be afraid to ask for support. Most Centres of Excellence have counsellors. Also, your partner and family are entitled to access this support. When you get diagnosed with cancer, so does your family. It affects everyone. They also need some space and support.
Another very important relationship is with your Clinical Nurse Specialist (CNS). I have been able to email my CNS and get advice in between appointments that have made all the difference. They are a hugely reliable and solid sense of encouragement and support and provide continuity and consistency.