Light a candle don’t curse the darkness

Hello everyone,

I hope that you have some light and love with you in your daily struggles.

My skin cancers are healing nicely. L

After my raft of appointments last week things continue in the same way this week. Today I saw my lovely eccentric Pain Clinic Consultant. She has prescribed a cream with chilly in it for some of the pain I get on my skin. I’ll give it a go but it sounds a bit weird.

Then I had a blood test. There were 48 patients in front of me. Sigh. I spend so much of my time in various waiting rooms. I cheered myself up while I was waiting by watching a documentary on death row. Lol.

After this I saw my haematologist. I’ve been told to persevere with the antibiotics even though they go straight through me. He wants to repeat my echo cardiogramme as there was an abnormality on the last one. He wants to repeat my lung function test. He wants to check my nerves and if I have an neuropathy. He also wants a fasting cholesterol test as my result is still sky high. He is going to refer me to a specialist post transplant lipid clinic. We talked about if they would ever use the word cured with me. He said let’s see about getting to 5 years. And then we will see after 10 years and if still cancer free then they might consider I’m cured. I’ll keep plodding on.

After seeing him, I had to see the dietician. She’s back in the department after a long gap and remarked how well I was looking. That’s good feedback to have. She is going to get a specialist nurse to contact me about the problems I’m having with the PEG and discharge and what’s normal or not.

Most people would not have that many appointments and interactions with medics in a month yet alone a day. I’m back again tomorrow where I’m seeing the consultant rheumatologist and when he is finished with me I need to have my Hickman Line and PEG Site redressed. Life eh?

People say to me why do I write this blog and work to raise awareness of this rare blood cancer called MDS and the complications following a transplant. The answer can be summed up in this anonymous quote - “If you have knowledge, let others light their candles in it.” I don’t want anyone to be sat in the darkness and if I can give something of myself to bring some reassurance to others then I’m happy to give myself away. After all a candle loses nothing by lighting other candles.