As today is the world awareness day of my rare blood cancer, I thought I should write a little blog about the realities of living with this awful illness and it’s complications.
I was in my early 30’s and still playing football. I used to play out on the right wing because I was very fast. I noticed I was being caught up more often and was getting a bit out of breath. I put it down to getting older but the tiredness that started at that time persisted. I also seemed to bruise more easily.
I went off to see my GP who arranged some blood tests. The next day she rang me while I was at work. She asked my if I was lactating. I laughed and said why would I be leaking breast milk as I hadn’t been pregnant? That was the beginning of two years of testing and prodding and poking. At one point they thought I had a brain tumour. Then it was an endocrine problem. It seemed that every time they tested, things would be a little off, but not drastically so. Then they realised the one thing that had been consistently low was my red blood count. My red cells were also consistently large. It was then decided to send me to a haematologist. At first my local hospital said it may be MDS. Eventually I was sent to a centre of excellence and it was confirmed I did have MDS.
At that time there was little info. What info I could find was scary and said the average survival was 2-5 years. I was just about to start a 3 year training course alongside my full time job where I was studying to be a priest. I decided I was not going to let the MDS get the better of me.
The hardest thing was the constant exhaustion. I would often sleep in the car while my partner and daughter went and did the shopping. I also had developed chronic nausea. This is an awful thing to learn to live with.
Most of the time I looked fine. Sometimes if my counts were a bit low I could look really pale. I didn’t tell anyone in those early days because I really didn’t want to be treated any differently. During my 3 year training course I ended up in hospital at least once every year. I always struggled back and caught up and was elated when I graduated.
I was ordained into the Church of England in September 2003. It felt like coming home and I was very happy helping a parish in South-East London and also working as a full time hospital chaplain. After 5 years of doing this I had to have a change of pace. Being on call at night was proving too hard for me. I had had one lengthy spell of illness where all my counts had bottomed out and I was neutropenic.
My next jobs took me into running a parish in Bermondsey as well as being a part time chaplain. When I felt over stretched there I became a full time school chaplain as that gave me the school holidays off. My health was beginning to really fail and I had many bouts of sepsis. This comes with a 60% chance of survival. At one point, whilst on holiday with 12 of my family I developed septic shock. This time there was only a 40% chance of survival. My poor family were told my organs were failing and I was dying.
Fortunately I am made of tough stuff and I bounced back. My wonderful team at Kings College Hospital eventually said I needed to have a stem cell transplant as the chances of me dying were growing stronger with each illness and dip on the roller coaster I was on.
The next problem was that there was no match worldwide for me on any of the donor registers due to a rare abnormality. My sister came forward for testing and we were told there was only a 1 in 4 chance of her being a match. This is always the odds with siblings. Amazingly Gail was a match and I had my transplant in Oct 2016.
The transplant went relatively well. At one point I had a bit of a collapsed lung. I also had a couple of bouts of sepsis but all in all it wasn’t too bad. What’s been hard are the complications of the high dose chemotherapy and powerful antibiotics. I now have moderate hearing loss. That’s been a very hard thing to adjust to, especially as I like to sing choral music.
I have also developed Graft Verses Host Disease. This can be life changing in itself as it’s attacked my liver, gut, mouth, eyes, joints and muscles. Due to the extensive nature of my GVHD I am being treated with ECP which stands for Extracorporeal Photopheresis. This means being attached to a machine for 2 consecutive days every 2 weeks.
I am now a year post transplant and still struggling from time to time but at least I am still here to tell the tale.
Life with MDS is hard. Many people have active monitoring and don’t need more than that, some have medicines to stimulate their failing bone marrow, some have blood and/or platelet transfusions and can end up dependent on these. This is time consuming a very frustrating. Some develop leukaemia, some have transplants and sadly some die. MDS is mainly diagnosed later in life and is unusual in children and young adults but not unheard of.
Over the years I have had thousands of blood tests, cannula’s central lines, in fact more pricks than I know what to do with. I’ve endured many procedures and learned to live with, at times, excruiciating pain. The NHS has saved my life over and over again and I count myself blessed to have access to such amazing treatment.
As it’s a rare cancer our support group is a very small charity. The MDS UK Patient Support Group does an amazing job supporting those newly diagnosed and giving up to date and realistic information. The group also campaigns to raise awareness and challenges some of the more questionable policies that come out of government. This group didn’t exist when I was first diagnosed. I really pleased it’s available now to those who need it.
On this world awareness day could I ask you to post this blog on and share it around to raise the issue of this rare cancer and show your support of those of us that suffer from this debilitating illness.
Thanks.
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