It’s tough going

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. 

Wonky immune systems don’t go with pandemics

It’s taken me a while to harness my thoughts for this New Year blog. My mum would always ring me after midnight on New Years Eve to wish me happy New Year. She would quickly follow that up with, “thank God that years over” I would try and remind her that there were good times in the year that had gone too and that she shouldn’t wish her life away. It made no difference and the whole routine would be gone through again the following year. 

I have never wanted to close the door on a year before. I’ve always been an optimist and not just a glass half full person either. I think you can fill the cup no matter how much is in it and count your blessings. I obviously don’t take after my mother! Yet this year for the first time ever, I am happy to leave 2020 behind. I bet there are many who feel that way too. I could not have imagined that for most of this year I would not have been able to hug my grandchildren or even be in the same room as them. That I wouldn’t be able to go on trips out with my sisters and brother or daughter. That I wouldn’t be able to treat my long suffering partner to a holiday or meal out. That I wouldn’t be able to travel to Ireland to see family and friends. That I would have to wear a mask everywhere I went and even clean my online shopping with antibacterial wipes before I could put it away. My how times have changed. 

Sadly my beautiful Aunt Dorothy and her husband the lovely Uncle Richard died in the early days of this awful pandemic. Then just this week I heard the sad news that my old friend Geoff and another friend Pam had died.  Today I learned of a teacher in Lewisham and an 8 year old from Bristol dying. These unnamed individuals are indicative of the complexities of our situation. Gavin Williamson and Boris Johnson both stated this week that our schools are safe places. How can that be when they don’t even wear masks in the classrooms but only in the hallways? This teacher and child had no pre-existing illnesses according to reports. The exceptional times we are living through call for exceptional measures to be taken. I am a huge advocate for good education but not at the expense of someone’s life. All the kids are in the same boat. Put the resources into helping those that need it to access remote learning for now   Also maybe making the whole cohort repeat a year. Kids are resilient and will bounce back. The only ones I worry about are those whose homes are war zones. I know what it’s like to grow up in a house that’s not safe and find sanctuary in school or with external agencies. We need to get better at picking these kids up and safeguarding and supporting them. 

I told you about how many people I know who have died from Covid. I also know a further 2 who were hospitalised and another 4 who had it and recovered at home. We all know people and sadly many of us have not been able to attend funerals due to restrictions. My heart goes out to all who mourn, especially my cousins and friends. If I can help any of you in any way, please get in touch. Just for now know that I’m holding you in the light during this really tough time. I wish I could do more. 

Despite all that angst and sadness, I choose to live in hope. Hope that we get a fair and effective vaccination programme for the world, not just the rich countries. That scientists continue to study this awful illness and maybe find a cure. I also hope that others assume their collective responsibility. I have safe guarded my fragile health with a passion for the last 20 years of living with cancer. Now, my wonky immune system is reliant on everyone else doing the right thing. It scares me when I see protesters outside St Thomas’ hospital saying that Covid is fake news. They shout and scream about their liberty and think it’s all about them. If any of them had a child with leukaemia they would not be able to visit that vulnerable child without wearing a mask. I’m sure they would do anything if it saved the life of someone they loved. I can’t get into the mindset that would not extend the same to anyone who is vulnerable. 

Covid tentacles reach into so many aspects of life. For example I have a small skin cancer on my back that was due to be cut out this week. It’s been indefinitely postponed because the outpatient dermatology nurses and doctors have all been moved onto the medical wards to free those staff up to deal with all the extra Covid patients. My skin cancer is not serious and I am not a worrier so that is fine. Sadly though there are others who will be effected badly by these delays. My heart goes out them. 

Regular followers of mine will know I’ve been have phototherapy twice a week to treat my extremely itchy damaged skin. It was just beginning to give me a tiny bit of relief. Sadly that too has been stopped and my skin is really itchy again. It’s like electric ants crawling all over me and if I dare scratch it makes it’s 100 times worse. 

My haematology appointments continue as does my monthly IVIG which is given over a couple of hours in a drip. I can see the hard working team around me constantly looking at ways to keep us all safe and ensuring nothing gets missed haematologically.  It’s a thankless task as some can’t see beyond their own irritation. As an old timer, I see things differently. These medical teams are working flat out and they have my support and respect. 

This year, like every other, I’m sure, will be full of loving family and friends. We will just connect differently for a while longer. There will be fun and laughter and there will be trials and tribulations. Some relationships will deepen and some will wane. There will be fantastic new experiences and there will be monotony at times. Sadly there will be more deaths and there will also be some incredible survival stories. 

All of this is life, not just the good bits. Pandemics have happened before and they will happen again. We just need to get better at dealing with it. They say wise people learn from their mistakes. I think really wise people also learn from other peoples mistakes. So let’s all make a commitment to make the most of whatever life throws at us this year. We can’t change what happens to us but we can change our attitude. Today I’m sending out some love and hugs and encouragement for us to go and greet the New Year with gusto. Have a good one people. 

Here’s a prayer for the praying types too. 

Xx

O God,

make me discontented with things the way they are in the world,

and in my own life.

Make me notice the stains when people get spilled on.

Make me care about the slum child downtown, the misfit at work,

the people crammed into the mental hospital,

the men, women and youth behind bars.

Jar my complacency, expose my excuses,

get me involved in the life of my city and world.

Give me integrity once more, O God,

as we seek to be changed and transformed,

with a new understanding and awareness of our common humanity.

-- Robert Raines (adapted)