I don’t very often feel low but I must confess I am feeling a little down. At first I thought it was because it’s my birthday next week and I can’t be with the family and friends that are important to me. On further reflection, I don’t think it is that. I think it’s deeper.
When the clinical trials were taking place for the vaccines they were unable to test the efficacy in the blood cancer community as that would be unethical. Also those of us that have had a transplant also have the additional problem of being on immunosuppression drugs and having a wonky immune system that doesn’t respond as others do.
The research that has been carried out since has shown that people with solid tumour cancers respond well to the vaccine but blood cancer sufferers don’t respond as expected. This means we have to continue to shield. We may have a good response, we may only achieve a small response but we will never cope well with infections, especially one so deadly.
In the next few weeks I will have been shielding and leading a much more limited life for a year. I feel that in general, I’ve coped very well. I’m made that way. I just take it on the chin and get on with it. However, the thought of this going on indefinitely is almost impossible to bear.
I’m gregarious by nature. I love new experiences, meeting new people, socialising, singing, being close with my family and hugging my grandchildren. Since the diagnosis of blood cancer 20 years ago, I’ve lost so much. My fitness and ability to enjoy and love playing sport. Riding my motorbike. Working. Dancing. Walking in the woods and cliff tops. Staying up all night because something fun came up. The list is endless. Because I’m me, I’ve adapted to all these things but sometimes enough is enough. I wish I could scream but it’s not in my nature.
On top of this relentless isolation and boredom at times, I’m having a flare in symptoms. My skin is really hot, dry and itchy as is my mouth and eyes. My nose is also really dry and burns. My hands and feet are unusually hot and tingly. My legs are weak and shaky. I have burning pains down my biceps. My joints feel like they are grinding bone on bone and I have pain under my rib cage and around my back. My throat is raspy and dry and quite hoarse. I’m also breathless and wheezy.
My consultant knows me well and increased my steroid dose. This made me feel a little less stiff but added in some sweats. I’ve been taking them for around 6 weeks and I’ve started the weaning process again. This means the symptoms are flaring once more but I can’t keep taking such large doses of steroids. They are so bad for the rest of me. My bones have been affected, as have my adrenal glands. Sometimes I wonder if I’ll always have this yoyoing relationship with steroids. The other thing is vaccinations are less effective if you’re taking large steroid doses. It’s like I’m damned if I do and damned if I don’t.
One of the other things I find challenging is the relentless pace of emails and possible zoom meetings and conference calls and teams. I can’t keep up with it all. So much of it is crap and it can be hard to see the wood for the trees. There are some things I really want to participate in and others that I just don’t want to know about. I don’t concentrate so well since the transplant. I can be forgetful. I see a service or group meeting and think “oh that will be good” by the time it comes round to it I’ve forgotten as a load of rubbish has come in on top of what I wanted and distracted me from the thing I wanted to do in the first place. I have over 1200 emails to sort through. Sometimes I don’t open one because I know it requires me to do something and then it gets buried. By the time I then find it whatever it was telling me about is over and I’ve missed it. It’s so bloody frustrating. I only recently found out that I missed a load of good stuff and community week with my friends and colleagues in the Iona Community.
When I was working, I had a very strong work ethic. Nothing was too much trouble and I always managed to achieve what I wanted to and then some. I could push through the tiredness of the cancer and sometimes work 14 hour days. As long as I had my days off, I could keep going. Now it’s like I have sleep incontinence. It’s hard to express the fact that I can’t even keep up with my inbox. I don’t know what the solution is either.
It’s also hard to be on zoom so much as it almost requires more concentration. I get worried I’m going to fall asleep on camera. I also have to remember these days to put my teeth in too. I find that quite a challenge. Out of everything that’s got messed up over the years losing my front teeth is really hard.
The final insult lately is even on the really odd occasion that I go out for a “walk” for my mental health on my mobility scooter, things are a challenge. My scooter has become unreliable and doesn’t always work. Sigh...
It’s not like me to moan and groan like this. I guess we are living in exceptional times. Most people are hoping that by the summer they can get back to normal. For some of us that may never happen. Please spare a thought for us and that a way is found to protect us too. When you all move on, remember us who will be left behind.
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