MDS is a bone marrow failure disorder
MDS is a blood cancer
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London, UK

I was diagnosed with a rare blood cancer called Myelodysplastic Syndromes. I’d been having symptoms for a while but was officially diagnosed and confirmed in 2000. I had my first strange blood tests in the 80’s when I was in my early 20s. My GP discovered I had very large red cells and was a bit anemic. She asked me if I was drinking too much and gave me some iron and left it at that. This continued to come up as an issue every now and again for the next few years. One day my GP phoned me at work and asked me if I was lactating. I started to laugh and said had she rung the right patient? She said that my prolactin was sky high. She repeated the test a couple of times and got the same high reading. Also, my cortisol was high too. On top of this some of my thyroid tests were a bit off as was my calcium but not all of them were off. She eventually referred me to a specialist. I was given a brain scan as they thought I might have a pituitary tumor. This was negative. I was prodded and poked many times and by a variety of specialists. Lots of things were just slightly off but nothing conclusive was discovered. After a couple of years, I was sent to a local hematologist as the one consistent was the large red cells and the low-grade anemia. They did some tests and said that it could possibly be MDS. So my diagnosis became MDS. Eventually in 2000 I was sent to Kings who did a bone marrow biopsy. This was when I got to meet the amazing Professor Mufti. He told me it was definitely MDS and put me on what was called “watch and wait” It’s a horrible term because it’s like you are waiting for something to happen. It’s like the sword of Damocles hanging over your head and it can fall at any time. Active monitoring is a much more positive way of putting it.

As the years rolled by the appointments got closer together as my illness progressed. I’ve had sepsis around 14 times. I’ve had serious line infections from having a hickman line inserted into my chest which would sit just above my heart. Last year I had 2 types of flu and have had flu every year since I had my transplant as well as a few times before. I’ve had NG and NJ tubes and still have a PEG J inserted in my tummy due to long periods of not being able to eat.

When all this started, I was a young fit football player. I never walked anywhere, instead I used to run. I rode a big motorbike. I worked full time, sang in a choir, volunteered with St. John Ambulance, was a Venture Scout Leader as well as playing and training hard with my football. I played for Millwall Lionesses and went on to play for Charlton Ladies.

After all these years of cancer being my constant companion officially for just over 20 years, there were early tell-tale signs 30 years ago, and I now live a very different life.

I had a stem cell transplant in Oct 2016. My younger sister was my donor and my life was saved by the amazing team of hematologists and allied health care professionals at Kings many times over. My life has definitely been saved but at what cost. My quality of life is much less than what it was. I now walk very short distances with a stick or use a mobility scooter. I have serious hearing loss and wear bilateral hearing aids. This is due to damage from the high dose chemo and antibiotics. I have myopathy, which is muscle weakness from all the steroids I’ve needed. My lung function is not what it used to be, and I get breathless very easily on exertion or when singing. My skin feels like it constantly has ants crawling all over it. I have awful reflux and wake up choking in the night. I can’t lie down at night because of this and that has an impact in my neck and shoulders. I get ulcers and lesions in my mouth and several of my teeth have cracked and snapped off. My muscles and joints throb, burn and ache. I haven’t been able to work since my transplant and this has been a big blow. The list feels endless and there’s often a new issue to add.

Despite all of that, I’m glad I’m still here. I’ve seen my daughter grow up into a wonderful woman and capable mother. I’ve loved and nurtured my 4 beautiful grandchildren and miss hugging them terribly during this awful pandemic. I’m still here and in love with my long-suffering partner. When someone in the family has cancer, the whole family has cancer.

Cancer has taught me to live deep within my soul. It’s taught me what’s important in life and not to sweat the small stuff. It’s made me even more resilient than my unusual childhood had already made me. It’s introduced me to some fantastic people among the patients, doctors, scientists, advocates, allied professionals, admin teams, cleaners, patient support groups personnel and charity workers.

With my youngest sister Gail who is my life saver. She donated to me.

I’ve also met two amazing sisters and a brother and their wonderful families who I had never met before. We share the same dad. My cancer diagnosis spurred me on to keep looking for them. I’m so glad I did.

I am also blessed to live in a country with a first-rate health service. I have the most supportive and loving family around me. Not everyone is so fortunate. I also have some very clever and creative consultants and medics who I trust and who always have my best interests at heart even in these strange COVID times we are living through.

My job is to keep on top of it all and not curse the darkness but just keep lighting candles.

Victoria told me one of the things to be looked at in clinical trials is adding COVID antibodies into the mix to see if that helps people like me who probably won’t respond fully to the vaccine. Scientists and doctors and Pharma companies are so clever. Let’s hope they find a way for it to work.

Victoria also said that she would look into a new drug that may help me. She was going to discuss it with her colleagues and then see if I would be appropriate for funding. It’s so good that the team behind me are still committed to making me as well as possible. They haven’t given up on me once. I’m touched by their commitment and faith in me. I’m also willing to give anything a go that may help. Advances are being made all the time.

When I get to the end of my rope, what I need to do is tie a knot in it and hang on.

I’ve had both my COVID vaccinations but no guarantee it will work. Even if it gives me a tiny bit of immunity it’s worth it. I’ve been told very clearly; I need to continue shielding for the foreseeable future. Regular readers of mine will know this was hard news to swallow and made me feel down for a few days. I’ve bounced back as I usually do because I have to choose to live in hope.

I let my grandkids draw on my head so they wouldn’t be so upset or scared about my bald head.

To all of you at different stages of your own story, I write this to encourage you. Sometimes the only thing you can do is grit your teeth and breathe through it. There will be days though when the smile of a grandchild lifts your day or a cuppa with a friend eases the burdens or a hug from the partner reminds you there’s more to you than cancer. I try not to be defined solely by my illness. There is so much more to me than cancer, hospitals, and medication.

I’m a partner, mother, grandmother, auntie, sister, cousin, niece, priest, friend, and neighbor. Cancer can’t rob me of that, and I choose to keep moving forward and step out in the hope and light of each new day.

“Act as if what you do makes a difference. It does!”

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