The challenge of social isolation

Wow. We live in very strange times. My head is spinning with different ways to get through the next 3 months of social isolation and distancing. I’m more fortunate than most in that because of having my rare blood cancer, Myelo Dysplastic Syndrome and subsequent bone marrow transplant I’ve been through extensive periods in isolation already. The worst time was a 6 week period in a tiny room at Kings and all my visitors, nurses and doctors had  to wear masks. That meant for a whole 6 weeks I never saw a smile. At the time Tina was acting as my unofficial PA. She printed a load of stickers of mouths smiling. Every time I had a visitor they chose a sticker for their mask. It was an innovative way of solving an usual problem.  As I’m used to doing this and also as I always have to avoid people with infections and public transport, I don’t feel so restricted. Also I’ve had to face my mortality many times. I had sepsis more times than I can remember now. That carries a 40% chance of death. On one occasion this developed into septic shock which carries a 60% chance of death. That time I was taken to intensive care. My family were told I may die as I was going into organ failure and wasn’t maintaining my blood pressure. So for me living under the threat of death is not a new thing but for many of you it is a new experience. I am aware of the fear that many of you are experiencing and the high levels of anxiety that are around. I know that many of you are also worried about me and other “vulnerable” family members. All I can say is this too will pass. Nothing stays the same. The more we pull together and help each other the better it will be for the whole community. With that in mind I am going to try and give some advice and challenges for anyone who follows me and would like some virtual support and encouragement. After that I will update my blog on my latest.

Yesterday I had the honour of taking Jimmy Douglas’ Funeral. I had permission from my consultant and I had to comply with strict social isolation guidelines. This meant keeping my distance from people and not shaking hands or greeting all the mourners before or after the service. It felt alien to me. I am such a tactile person and I know how healing a hug or touch can be. There were less mourners than would normally have been expected as Jim was a well loved and respected trade unionist who had made such a difference to the lives of the men and women he supported. He was instrumental in supporting one of the pits during the miners strike and lost his job to Murdoch during the Wapping dispute. How can you not honour a man who has made a difference to the world?

After I walked away at the end of the service having only said goodbye to Jim’s immediate family, my heart felt heavy. I wanted to stay and chat but knew I couldn’t. Instead I drove to a nearby seaside town which happened to be Hunstanton as I was in Norfolk. While sitting overlooking the sea my partner and I had a picnic in the car. That is definitely something we can all do during these days of separation but only if we are on an essential journey. I also stood and overlooked the sea for 5 minutes before getting back into the warm car.

As for me and how I am doing. I started my new medicine on Monday. It’s called Imatinib. Have any of you been on it? If you have, did it make you puke? Feel free to privately message me if you don’t want to write a public post reply.

As the days went by I noticed my appetite was waning and I wasn’t feeling so good. Thurs evening came and I just couldn’t face my dinner and I had a pretty horrible belly ache. All of a sudden and completely out of the blue my stomach went into a spasm and I knew I was going to be sick. I only just made it into the bathroom but started puking as I approached the loo. I am well used to being sick and managing it all. I have never known projectile vomit like it. It basically hit the toilet seat and splashed in every direction including the clean washing on the airer the other side of the room. Maggie and I are still finding splash back. Lol. It was like a gushing tap that took a while to turn off. I was also covered as were my shoes. I had to put everything in the wash before falling into bed feeling really rung out. I fell asleep quite quickly but woke up being sick again. This time I was prepared and had a bowl which I filled. My poor long suffering partner emptied it for me and got me a cold cloth for my head. She makes such an important difference to me and enables me to cope with so much. I would be lost without her. She became really worried about me especially as I had the funeral the next day. I said I’d probably be fine as I thought it might be the Imatinib that was causing the problem and I wouldn’t take it that night.

The next morning I felt rubbish and looked it. I’m never good first thing. I only managed to take half of my medications and didn’t have any breakfast or even tea. I reassured my other half that all would be ok. She wasn’t so sure. We set off with provisions for the journey as well as our picnic for the sea and something for me for breakfast once I felt able to eat.

We got as far as Cambridge before I felt I could stomach something. When you haven’t eaten much and you are about to exert yourself physically by taking an important funeral, it’s important you fuel yourself wisely. I had half a sandwich with peanut butter and strawberry jam. Loads of calories and energy but not a huge volume to get down. It did the trick and I started to feel better.

We arrived an hour early for the funeral and I had another snack. I would have loved a cuppa but can’t take the risk of purchasing take aways. Instead I had plenty of water to replace what seemed like all the fluid in my body that I had puked up the night before.

As mentioned the funeral went well and then we had our picnic by the sea before heading back down south.

So now I’m back home and trying not to worry about taking the tabs again. If I start to puke again I will know it’s the tablets. The problem is where do I go then? My symptoms are bad currently because I can’t access ECP. This means I’m really itchy and achey. My mouth and eyes are very dry. My tummy hurts. My voice is croaky and finally my breathing is crap! I know my wonderful team in haematology will do everything they can to help me but I fear they are going to be rather busy these next few months.

One of the things I am fairly good at is being creative in the face of adversity. What I’d like to do is set a change each week that you can complete should you wish. My first challenge I hope will be something you can all identify with. We all have that one drawer in the house that we chuck stuff in and we know needs sorting. Let’s take the gift of time we’ve been given to sort those drawers this week. I’m tackling my bedside cabinet. How about you? Where is the drawer in your house that pricks your conscience and you keep putting off for a rainy day? Do post a picture if you want to join in the fun.

For now, I’d like you to know I am holding you and yours in the light during these uncertain times. Please take care of yourselves and where you can each other. Please pay special attention to those who have not embraced our technical advances and are unable to stay in touch through those channels. Instead of texting, why not pick up the phone and have a chat with someone who you know might be vulnerable and alone.

With such a huge problem going on affecting the world I thought I would finish with this fact about all the world religions. Did you know there is a verse that is found with similar words in every single one of the world religions? It’s the verse that says “Do unto others as you’d want them to do to you” Modern day is treat people how you want to be treated. If we all did this wouldn’t the world be a better place?

Take care people. I’m sending safe virtual hugs on angel wings with this blog.

Ps I came across this group called The Script. I really like the song and lyrics Run Through Walls. If you look it up, I hope you like it.