Bit of a time of it, bit of a doormat, bit of a rambling post

Not sure where to start but I guess I am touching base with all you MM folk. It's Friday night and I am burnt out. I recently went to a local charity to see what help I could get and the woman made it clear I haven't had any since I was diagnosed back in December 2023. Like most people I imagine, it was a bit of a roller coaster from breaking bones to being diagnosed, then straight into treatment.  Currently I am in remission, and don't get me wrong, I am very, very happy to be, but it just feels odd. I suppose because I am still having scans, biopsies, blood work by the bucketfull and don't even get me started on how many pills I am taking a day.  Maybe it is because I still have aches and pains, the brainfog and of course side effects of treatment. Nothing really feels different. 

It'll be my first SCT rebirthday on the 26th of June. I know some people see it as a huge milestone and celebrate, but I don't have anyone around me that feels the same. In my head I'll acknowledge it, but that's about it.  I don't think many people realise what a big deal it is to go through that experience.

Anyway, back to the charity. The woman I spoke to was a former Macmillan nurse, she knew her stuff. She even apologised for the lack of help I had been given and on behalf of my local hospital. Short story is I'm a single mum, have a disabled 19 year old daughter who aside from alot of health issues also has autism, older brother with aspergiers and anger issues, elderly mother with a lot of care needed in regards to pain, depression and incontinence..she has autism too.  I am a carer for three people, three people who don't really notice when things are going bad, or if I am in a very low emotional state. They don't recognise if I am scared or upset, rarely anyway. It is lonely. So, for the first time since diagnosis, I am going to have some counselling.  I'm not sure what good it will do, other than give me a place to have a bit of a cry and vent. My mum and brother moved into my place, initially they said to help, but in truth it has been incredibly stressful and hard work. Now my mums mental health has declined, I can't at this moment consider her moving out.  Yes, there are people  who can support all three of them, but none of them seem keen to take outside help, especially my mum. I walk on eggshells in my home for fear of upsetting them.

Enough of that. From diagnosis, up until today, I belonged to a facebook group regarding people affected by myeloma in the UK.  I found I was supporting people there too. They were mostly nice, but scared, and if I could reassure them, cheer them up, I felt better. I made a few casual friendships, people asking how I was on a fairly regular basis and vice versa. Sadly, I suspected over the months that the admin had a bit of a god complex. Always the way with these things, you get it with people on various councils and groups, a power trip when in actuality, they have no power at all really.  I decided I was going to leave, the woman at the charity put the idea in my head, she said I give too much, I've been burnt out and it seemed a good idea.  I had a little clash with the admin over a goodbye post they refused to publish, which confirmed my suspicions, they aren't very nice.  I feel freed now though. Instead of propping people up all the time, I am allowing myself to step back, even be propped up a bit myself. 

Now I am at the end of a long week and about to enter a busy one. Bone marrow biopsy on  Monday, treatment on Tuesday, vaccines on a Wednesday, carers appointment on Friday,  work in the house and garden the rest of the week.  I wish there was closer myeloma support though, a social group or something. My nearest is Swansea at Maggies. I don't want to have to start up something myself, I want to be able to just take a breath, force myself not to do anything but deal with my cancer, nothing more. It's certainly needed around here.

I've gone on long enough. Good night, rest well, and pain free dreams to you all.