Sometimes when I post things I think about them like I’ll put such a thing on, but it’s an idea and then the rest just flows from my fingers once I start. Sometimes it’s what I initially thought, sometimes it’s completely different. Sometimes I want to post about something, like I want to tell all about my stem cell collection but it won’t flow – a bit like my blood at the time. I’ve tried a few times but it’s still not right. I’ve learnt through making stuff that projects just come when the time is right and the more I think about things the harder they are and the less right the results if I start to make something. I wanted to share my experience with the little old lady in the wool shop but I forced it and it doesn’t fully convey how much she ‘shone’ on that day to me and Lesley.
So today I wanted to share the idiosyncrasies of small children, as per my friend’s grandson’s reaction to his Myeloma Buddy beanie, but instead I find I’d like to be completely morbid and get something off my chest.
We all deal with things in a different way, I understand that, whatever gets you out of bed in a morning and through the day but I hate it, completely and utterly hate it, when I hear/read myeloma referred to as a terminal illness. I have learned that some people are happy to do that and still manage to get out of bed in a morning but not me. I’ve always considered a terminal illness (I actually find it uncomfortable to type the expression) is something for which nothing can be done.
I came across a blog recently, via a shop on etsy, and in the profile she described her husband as having multiple myeloma a terminal illness he had been battling with a cheery attitude for four years. Another one a few months ago that had me gesturing at the screen just as Bernard walked in said something along the lines of ‘I found my diagnosis of haemorrhoids’ (or something similar which is of course a pain in the bum but not exactly life threatening) ‘harder to deal with than my terminal illness.’ She’s had myeloma for five years.
This isn’t to say that I don’t understand the nature of Myeloma although I may not fully understand it yet (I still can’t grasp the Kappa, Lambda, light chain thingies – I came top in physics and chemistry once at school but wasn’t so hot at biology). I’ve read the statistics and found out the difference between an average and a median (a word I just love, don’t you find that with some words for some unknown reason, I also particularly like writing solicitors in shorthand).
I’ve always had an intolerance for negative people – a surveyor I used to work with induced tourettes in me whenever he walked into the office or I had to speak to him on the phone – he was an ‘energy vampire’. My shoelace snapped it’s the end of the world, I have a mortgage at my age, yes that property had a small lake (not an everyday occurrence where we live) but it’s not my fault I didn’t comment on it, I can’t even be bothered to say morning, feel sorry for me – Argghhhh. Some people worry, B is one of them, but that doesn’t necessarily mean they are negative.
I had a taste of a kind of negativity, well I actually had a taste of being a completely deranged lunatic with horrendous OCD and no sense of humour except for half of day 2 and day 15, when I was on the steroids and was more than relieved to read recently of new therapies without Dex.
I personally don’t believe in God, I have friends that are regular church goers and who participate regularly in the weekly general churchliness as well as going on a Sunday, but I have faith. I don’t necessarily know what in but I have it, maybe in the power of optimism.
So this is my interpretation…
‘Yes, I have multiple myeloma, yes, at this moment in time it’s not curable, yes, it may one day finish me off in either a direct or contributory way but no, I do not have a terminal illness!’