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We’re hoping to sort a lot of Hospital things out today and I’ll report how successful (or not) we are later 🥸

Blenrep is a powerful drug, which if it doesn’t damage me too much, could keep me safe and happy for quite a long time . Like many powerful drugs, it has many potential side effects. The most scary of these is that it could damage my eye sight. Because of this, I made myself a… Continue reading DAY 992 Sunday (3rd August 2025)

Big changes happening as new treatment is planned … It’s planned to be the latest and most powerful medication to fight against Myeloma. It’s called Blenrep or Belantamab Mafodotin … a catchy name eh? There’s a lot more to write about this, and I’ll try to write more tomorrow.

Yesterday was PET CT scan day 🙄. It involved a machine that looked like this … I spent over an hour, wrapped up tightly like a chipolata sausage, VERY VERY slowly travelling through the scanner. It’s not a great experience … the whole process took about 3 hours. I’m looking for sympathy here 🫤. Anyway,… Continue reading DAY 966 Tuesday 8th July 2025)

I had a PET CT scan booked for Saturday 12th July … but yesterday my consultant said that she wanted it to happen sooner. Today the hospital phoned to say that the date has been changed – it’s now set for Monday 7th July. Oh well …

I haven’t been keeping my blog up to date because so many things have been happening. I’ll try to add them here in date order 🤞 I developed a horrible itchy rash about 3 months ago and because of that my dr asked me to stop taking Lenalidomide. That was my maintenance medication after my… Continue reading DAY 960 (2nd July 2025)

Well, yesterday was fun! It was bone marrow biopsy time … where they drill into my back to extract bits of me for investigation. Because our🩸 is created in our bones a load of information and other stuff can be extracted by drilling into our bones. That’s what they did to me in hospital on… Continue reading Day 954 [Thursday 26/6/25]

ok ….. I’ve had a bit of a struggle adding to HubbleBubble but I think I’ve cracked it now. On 14th May my Dr [Doctor Mad] decided that I must stop taking my maintenance therapy (lenalidomide) for 2 months because it was causing horrible itchy rashes – even though it was keeping me alive. Paraproteins!… Continue reading Day 950 [21st June 25]

I’ll write this post in a few days time … maybe. In the mean time I’m going to day 950. See you there 😊

My new medical team includes Dr Maduwanti Jayaweera (known as Dr Mad – really!) and she has taken over management of me! Because of that I had an echocardiogram yesterday. I won’t go into details of the process yet – but the outcome was that I have a leaky heart valve !!!! 🫣😱 Bu