Today is Rare Diseases Day. MDS or to give it its full title myelo dysplastic syndrome is rare enough. Within that group diagnosed with MDS there are many subgroups. Mine is RCMD which stands for refractory cytopenia of multi lineage dysplasia. On top of that I have hypo cellular bone marrow and an autoimmune component to my illness. If you are already a rare group the subsets are going to be even rarer. This can bring about many challenges. We are all unique and respond differently but sometimes safety in numbers has its advantages. We only need to look at the current pandemic to see that in action. In order to get clinical trials through and to get good quality data you need as many participants as possible. With Covid19 you can get 100s of people every day. This has enabled the science to move on in leaps and bounds. That's not the case with rare diseases. A GP would be lucky to see just one case of MDS during their career. Local hospitals may only have a few patients. Thats why it's so important to have an addition opinion from a Centre of Excellence where they see most patients. I'm really fortunate to be looked after by Kings in London.
I've been dancing with my cancer for 21 years now. I had a stem cell transplant in 2016. I'm still living with the complications of the cancer and its treatment. I say I dance with my cancer because I don't like the battle terminology. When people say so and so lost their battle with cancer, it makes me shudder. People don't lose their battles. My experience is they struggle on right up to the end giving it every bit of strength and courage they have. If you go into remission, it doesn't mean you've won and those that don't win have lost or not fought hard enough. It just means the cancer was overwhelming. Cancer is an awful thing and very unpredictable for some. The dancing imagery suits me better. Sometimes I'm dancing so fast that I can hardly breathe and after that particular music stops I collapse into a chair exhausted. This might be dealing with yet another infection that has led to sepsis, which I've had many times. Other times there might be months go by where all I can do is be held up by the love and support of who is dancing with me and slowly shuffle my feet. Sometimes I waltz with my medics going this way and that as we try different medications and treatments to help my quality of life. I hope that helps make sense of how language can be challenging when talking about illness and cancer.
My latest news is mixed. I have hands that are like sandpaper both sides. They are also hot which is highly unusual for me as I'm normally so cold that I joke with people that I'm part lizard. On top of that my fingers are stiff and I'm not as dexterous. I struggle to pick up individual tablets. My nails keep peeling and splitting too. Strange that so many things are going on in this one small area.
The rest of my skin feels irritated and slightly burning like I've been in the sun. It's also very dry and sadly still itchy. It doesn't feel like sandpaper, as my hands do, but it feels quite taut. I've always had very soft feet. I never go barefoot and I never wear uncomfortable shoes. I'm mainly in trainers or ankle boots with a good sole. If I was to wear high heels, I would walk like a parody of a man in drag. I just can't do it. I also don't wear sandals or flip flops. Despite all of this I now have hard dry skin, the kind that people who are on their feet for ages or don't wear shoes get. It's weird.
My mouth is also really giving me grief. I keep getting blood blisters and ulcers and a sore tongue. I've also lost two teeth in the last year, both of which have snapped. On doing some research it seems this may be linked to the high dose steroids that I've taken on and off since 2014.
my lovely consultant, Victoria, has managed to secure permission for me to have a new medication that may help with some of these challenging symptoms. I've been taking them for two weeks and not had any side effects. They should start reaching the efficacy point after 4 weeks. I'm keeping everything crossed that this is the case.
My legs are challenging me these days too. It seems if I'm standing, like doing the ironing or washing up, my muscles go tense and feel really tired. I was cleaning a chair the other day in the garden and it made my stomach muscles feel like I'd completed 50 sit ups. How can that be? It's all perplexing. My muscles have been really weak for ages and I tremble when I hold the kettle or try to pour a jug of water into the steam iron but this seems to have gone up a level.
One good thing to report is that since taking the new medication for the gastroparesis, I've had less reflux. It still happens but it's not several times every night like it was. It's a horrible feeling waking up choking with a burning throat. Let's hope it stays calmer.
Regular readers will remember that I had this weird episode where I partially lost vision in my one good eye for a very short time. This has happened twice since with both occasions happening in the last few weeks. This has baffled the team. At the time I was checked by Moorefields Eye Hospital, who confirmed cataracts but no major problems. My team at Kings decided to check the blood vessels in my neck with a special scan. I also had a 24hr ECG and this week will have an echo cardiogram. I'm glad I can't travel on public transport. With all the pipes and wires hanging out of me for the duration of that test I would have generated fear and panic in London!
Alongside dealing with all of this, the next biggest issue on my horizon is when can I come out of lockdown? When will immunocompromised patients have hope because vaccines can be ineffective in many of us? I'm doing ok so far but the thought of indefinitely being stuck in my house is almost too much to contemplate. I try not to let my thoughts run away with me on this subject. I know the medics and the scientists are working really hard on making it safe for people to rejoin society. I just hope those that will be left behind don't have to wait too long to catch up.
It can be tough keeping your inner resilience. Sometimes it can feel like you're going to buckle under the weight of it all. When the young students used to talk to me about their problems when I was their school chaplain, I would tell them they had the power to change the world. They would look at me as if to say "Yeah right" but I would follow it up by saying "to the world you are just one person, but to one person you might be the world. All you need to do to change the world is start with the person next to you. If you notice they haven't got a smile, give them one of yours, you have an unending supply" They always left me walking slightly taller and with a smile on their face. Well I need to practice what I preach and make sure I keep giving the love away. As long as I've continued to give and receive love then I've done alright. One of my favourite funeral poems ends "love doesn't die, people do. When all that's left of me is love, give me away"
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