By a strange coincidence, on the first anniversary of when I was admitted to Pinderfields Hospital with a nosebleed that was the first indication that I had MDS, today I attended the hospital for a venesection to have blood taken out. I attended the same infusion unit I had been attending weekly for many months for red cells and platelets to be given to me, this time to have blood removed. Five months ago I had a stem cell transplant, which took very well, and I have not needed a transfusion since. However, over 30 transfusions have left my body with too much iron, which long term can be dangerous, and the most effective way of reducing it to a safe level is to regularly remove blood from me.
A year and a day ago, I had no idea that I had a serious illness, not least that I had a blood cancer. The diagnosis unfolded over the coming weeks, and after two months I was recommended for a stem cell transplant (SCT) which is at present the only cure. As an adult I had been robust and well, so it came as a shock to everyone. My blood counts when this began were dangerously low a year ago, but I was still functioning well.
So began a schedule of weekly blood tests and weekly infusions (transfusions) of red cells and platelets. Without them I would not have survived very long. With them I would, as it turned out, get to a SCT that gave me a possibility of a cure. Fortunately my white blood cell line held up. Five months in, I was advised that a donor was found that was a good match, and so seven months in I arrived at St James’s hospital in Leeds for a five week stay.
Those five weeks in hospital were the most challenging in terms of my personal health. It is a risky procedure. I got a chest infection that was quickly cleared up by antibiotics. My liver reacted badly, and I needed a serious and expensive drug to get me through. And one night they were concerned that I was having a heart attack, though they managed to stop the progress with beta blockers. I will never forget the challenge, but equally I will never forget the care and kindness of the staff who looked after me.
Up to the SCT I was getting slowly weaker, though I could still with determination walk two miles a day at a very slow pace. Somehow I avoided infections in that time, due largely to the care of my wife, my friends and family, who took great pains to protect me. After the SCT I was even weaker, but with great determination and wonderful support I set about walking again, very slowly, until I could manage two miles unaccompanied. There has been a slow and steady building up of my strength until I can walk at a reasonable pace for a much greater distance.
The shock of a cancer diagnosis is not just for the one with the disease. Cancer in particular stirs up deep concern and anxiety in everyone. It disrupted not just my life but the whole family – plans for travel got shelved, family events cut back, and anyone with an infection stayed away until they had recovered. It was particularly hard for the grandchildren to understand and adapt to.
I managed my own anxiety with regular meditation, and I took the position of being very open about it. I learnt as much as I could about the disease and the treatments. I did not share it widely on social media, but I did keep a blog of my progress and shared it with the MDS patient support group – there are many I know who still have no idea what has been going on this last year. I did not want or seek pity, rather I tried to treat this as much as possible as a practical set of problems. That is not to say that there were no dark days, but I managed to ride them out. Meditation and walking were my personal sanctuaries.
So now, a year later, I am as fit as I have been for many years. I still need to build my strength and to take care to avoid infections. Over the coming months I will need lots of inoculations, including all the childhood ones, as my immune system has no memory of previous infections. There is a while to go before I can claim to be cured, but the chances of getting there improve by the week.
Many things have changed, not just externally. I am still coming to terms with the disease, which has been at the forefront of my mind for a year. Now I can look forward and re-engage with a more normal life.. Has it changed me? I think so, but it is hard at present to put it into words. Maybe at my second MDS anniversary I will be able to express it in words. Now, I am just immensely grateful to everyone who has supported me, my wife, my family, my friends, all the clinicians, the NHS, the MDS patient support group, the list goes on.
I’m still here, and hopefully will be for a long time to come.