Suppressing the ego

Sorry for not updating sooner. I’ve been feeling exhausted. I guess it’s the Rituximab treatment. I have one more dose to go this Friday. Then it’s a 3 month wait to see if it’s worked. 

I went to the eye clinic today. This was a new department for me. The consultant was very surprised that my left eye has so little vision. It’s been that way since I was a child. I was given a thorough examination and the diagnosis is dry eyes and some inflammation. I also have early cataracts but nothing needs doing to these yet. The cataract in the left eye is worse but I don’t notice it, so that’s a bonus. I have been prescribed 3 different medications and he wants to see me again in 2 months to review progress. 

He was a really nice man. I believe he was Spanish. At one point I thought he was asking me if I was dying. It was very amusing because he was actually talking about iodine. Good job I have a sense of humour. Lol. He was extremely apologetic. I said there was no need and maybe mortality should be part of every consultation. He joined in the laughter. 

This week has meant to be my quieter week at the hospital. There have still been 3 appointments. My last one is tomorrow. That will be the final infusion in the Chemo Day Unit. I will miss them up there. They are a really lovely bunch. 

On top of all these appointments and feeling totally washed out I’ve been campaigning hard to try and halt the Forced Academisation of my grandchildren’s school. This week we went on an open top bus to lobby the DfE. Great that we had such lovely weather for it. This sort of thing is important to me. I never just want to be totally defined by my illness. There is more to me than the sum of my physical parts. I’m a spiritual and emotional person too. These aspects of me need nurturing. I also need some time thinking about life and the world and the universe. It’s not all about me. I think when so much attention from the medics is focussed on you, it’s easy to become self obsessed. It’s so much better to keep your horizons broad though. My lovely old chosen mum Marlene used to love a quote from the Book of Chronicles in the bible about God increasing your territories. In other words giving you a bigger world view. I hope that by fighting for the best from education as well as the other bits and pieces I do, that it keeps me grounded in the world and helps me not to become selfish. 

Here’s to continued good weather, good friends, successful campaigns, fantastic medical staff and a cure for cancer and GvHD!