As today is World Blood Cancer Day I thought I should do a post about the continuing trials and tribulations of a life differently lived due to blood cancer and the effects of treatment.
Many of you know but for new readers this story started when I was diagnosed with MDS (Myelo Dysplastic Syndrome) a rare blood cancer when I was in my early 30’s. I’d had weird blood tests back as far as my early 20’s so there had been a problem for a very long time. It took a while to diagnose me because statistically I was not in the demographic. Most people with MDS are diagnosed when they are older and it effects more men than women. Trust me to be different!
I lived with the condition secretly for many years. My poor old long suffering partner knew but I even kept some facts away from her in the beginning in my bid to not worry people. I used to say when people asked why I looked so pale that I had a funny blood disorder and left it at that.
As the years went by I was hit by more and more bouts of sepsis. Sepsis is a very serious condition with a 40% mortality rate. The reason I kept getting it was because my blood wasn’t producing enough white cells. This makes you prone to infection. MDS also affected my red cells and platelets. Some MDS is confined to one aspect of blood but mine was what they call multi lineage. That means I would bruise easily at times and also become seriously anaemic and need blood transfusions. Each time I got sepsis, I would fight my way back and after recovering I would get back to full time work. The dips and hospital admissions were getting more frequent and I was beginning to struggle. For my 50th birthday I wanted to go on holiday with my extended family. 13 of us went to Majorca for a couple of weeks of chillin’ in the sun. We had a super time including a brilliant day out in a speed boat. The day before we were due to fly back, I was taken seriously ill. I’d been sick in the night and I had a temperature in the morning and was a bit confused. My partner marched me straight down to the doctors. Thank heavens she did. The doctor didn’t speak English. I don’t speak Spanish. He took my temperature which was really high. Then he took my blood pressure, pulse and oxygen levels. All were in my boots. He looked at me, then looked at his readings and he banged the machine and did it again. Same thing happened. He was in disbelief that I was still upright. The next thing I knew I was put on a bed and I was surrounded by medics and had needles put in my neck and my clothes cut off. I had developed sepsis again but this time it had developed into septic shock and that has a 60% mortality rate. I was placed in ICU and my poor family were told I was going into organ failure and I may not survive.
I can’t image how hard it was for my daughter and sisters and extended family to fly home not knowing if they would see me again. Our travel insurance enabled my partner to stay on with me. The Spanish system was excellent and they certainly saved my life. I got out of hospital after 11 days and then had the best part of another week before I was well enough to fly.
It seems I have more lives than a cat but my medical team were worried that one day I wouldn’t bounce back. They prepared me for a bone marrow transplant which happened in October 2016. They started to search the bone marrow registers but no one was a good match for me. They said they would test my younger sister as she was the only full sibling I had. They warned us both that there was only a 25% chance of a match with any sibling. Fortunately, Gail was that match!
The transplant was a gruelling process but I embraced it warts and all as I hoped it would put me into remission and give me longer on this earth. It has certainly done that because 5 years later I’m still breathing.
Sadly though I live with the consequences of such harsh chemotherapy. I also have muscle myopathy (weak muscles) probably from all the steroids I’ve had to take. I have still got a wonky immune system that is not strong at all. I am treated with IVIG to give me some antibodies but I can easily pick up infections. If I do get an infection it seems to have a dramatic effect on my weak bone marrow and it goes into free fall and all my counts bottom out. My fantastic medical team at Kings keep a good eye on me and if they spot that process happening they admit me and fill me up with strong antibiotics. As I am fragile in that way covid has been a nightmare. I’m still having to shield. I haven’t hugged my daughter, grandkids, sisters, brother, extended family and friends since this horror started. I’m very tactile and I miss that contact. However I am blessed to have a garden that I make really good use of during the warmer months and entertain people.
Some of the side effects of all that treatment have been serious damage to my hearing, lung damage which leaves me breathless on exertion, muscle wasting, skin itching, cataracts, dry mouth and eyes, gut and absorption problems, gastroparesis and reflux and dental issues. I had a condition called SVCO which has left a few issues and I had a small stroke last year. I have also developed osteoporosis.
Despite all that I count myself lucky. I’ve seen my daughter grow into a beautiful young woman and a fantastic mother. I’ve seen my 4 grandchildren born and grow. I’ve proudly watch my niece finish her degree and start to make her way in the world. I’ve celebrated more than 30 years of love with my amazing soul mate and partner. I’ve presided over my sister and mothers funerals as well as many other family members and friends. I’ve welcome new life to the world and given thanks in baptism for them and I’ve married people and celebrated love.
If you are newly diagnosed, do not despair. I was diagnosed in 2000 and I’m still going.
One of the things that ill health has taught me is to live deep within my soul. I don’t sweat the small stuff or the big stuff. I know I’m blessed to live in the time I do where all these treatments are available to me. I’m blessed to have such a supportive family and friends. I’ve also got to know many virtual friends all over the world that I wouldn’t have known otherwise.
Living with blood cancer is not easy but it doesn’t have to be the end , it just means letting go of the life you thought you’d have to then live the life you do. It’s ok to struggle. These things are not easy but the struggling helps you to be the best version of you that you can be.
On this World Blood Cancer Day I wish you every blessing for all your experiencing and going through. Just hang on in there, some of the best days of your life hasn’t happened yet.
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