Thursday, 20 March 2025

End

This is the end. Beautiful friend
The End - The Doors

The last few months have been mostly filled with taking different drugs… and ending up in hospital. It has been quite arduous. We got to the point of acknowledging, reluctantly, that the clinical trial I have been on since Christmas wasn't working, and so I have stopped taking the most recent set of noxios drugs.

This left just one treatment option. But after long discussion we decided that the likely side effects would far outweigh any benefits the drug might give us. For once I’ve turned a potential treatment down. What a relief, to be off the treatment merri-go-round.

I am currently at home. I'm no longer taking anything to slow down my myeloma so it is choosing its own speed. It's not as bad as it sounds. I've got my family round me. I'm enjoying catching up with people I haven't seen for ages, and trying to make the most of the weeks or maybe months that I've got left.

It has taken thirteen years to get to this point, so in that sense I consider it not a total failure on my part. We always knew from the beginning that it would end up this way, so it's no great surprise, and I'm not remotely angry about it. We - both me personally and us as a family - achieved a lot during that time. And now the time is running out.

I'm at peace with it.

My biggest concern is to make sure that my family is able to have the softest landing that they can.

This is the last time I'll be posting on dialm, so for anyone who has been reading for a long time, thanks for sticking with us. I hope you have found it informative.

Goodbye

Saturday, 4 January 2025

Ticktock

All this talk of getting old, it’s getting me down, my Lord. Like a cat in a bag, waiting to drown, this time I'm coming down
The Drugs Don't Work - The Verve *

Since we last spoke…

Nearly 2 months without any chemo ☑️
Progressively worsening bone pain, and anaemia ☑️
Jumped the final screening hurdles to begin new clinical trial ☑️ 
Change of hospital, for now, too ☑️
Last minute blood transfusion ☑️
Began new chemo Christmas Eve ☑️
Christmas Day with the family ☑️
Boxing Day in bed ☑️
Infections and fevers ☑️
A week, over New Year, in the hospital with lots of antibiotics and the odd blood transfusion ☑️
Chemo put on hold ☑️ 
Got back home again on Thursday  ☑️
Maybe another blood transfusion coming up on Monday❓ 
Plan is to restart the chemo on Tuesday ⁉️

* Hopefully of course, the drugs do work. We’re yet to get an answer on that. For now optimism prevails

Gruesome bone marrow photos - I had 2 BoMB 💣 s in a month (one per hospital) which was a bit much