Hi there, welcome to a damp and drizzly Sunday which I’m actually really enjoying because I’ve opened all the doors and windows so I can wear my Oodie and be nice and cosy.
Well, it’s been another slightly eventful week, so this afternoon I will mostly be napping, which is currently my favourite hobby.
But first, this week I….
Started Treatment
After being told there might be a week or so wait for my Myeloma treatment to start, on Monday I suddenly had a call saying I could have an appointment on Tuesday.
Only part of that treatment is Thalidomide, and to take that they make you have a pregnancy test, which meant on Monday I had to make another last minute run to the hospital for a blood test.
Then on Tuesday I went back in for my first injection of Velcade and to pick up all the other drugs, of which there are many.
Here is my tired and hot face. Why are hospitals so hot?
Anyway, it was fine. I took my steroids, immediately puffed up and decided Thalidomide is a rubbish sedative when I had a rubbish nights sleep.
Took a lot of tablets
There’s a lot to manage. It’s like having a second job remembering hospital appointments and tablets and having to find a dentist and wading through the novels of information you get given.
I immediately found an app to help me manage this, as that’s the kind of person I am. I entered all my drugs and the times to take them. There were a lot.
I did notice that one of the drugs mentioned on the sheet I was originally given wasn’t in the bag, but I assumed that was a generic sheet and maybe I didn’t need it. I nearly called to check, but the card had big emergency things all over it and I decided this didn’t qualify and decided to ask at my Friday appointment instead. (Watch this space)
Had a haircut
This has been booked for ages so I was so glad there were no scheduling clashes to make me miss it!
Flint hair were awesome and booked me into a ground floor chair so I didn’t have to navigate stairs, and they even gave me some beautiful white tulips.
And now I am freshly trimmed and ready to face the world.
Had a visit from my Mum & Dad
My Mum & Dad missed an overnight trip to visit for my birthday because of my hospital admission, then made a flying trip for lunch. So this week they came up again for a proper overnight stay.
We went for dinner at the pub, and had a generally very lovely evening. The only photo I have is a selfie of me and my Mum, and just so you know, you don’t have to comment “don’t you look like your Mum?” As I already know….
Had my first Five Guys
Yep, all this time and I’ve never tried a Five Guys burger, we had them delivered for lunch with a peanut butter and salted caramel milkshake. I was more impressed than I expected to be. Yum.
Got told off
Friday afternoon I headed off for my 2nd Velcade injection. A bit tired and achey from all the exertions, but still with my positive pants firmly in place.
I thought Mr LLL was supposed to give the injection today so we could be signed off to give it at home. It turns out I have to do the whole first cycle in the hospital though, so he just observed again, and next week apparently he can give it, in the hospital.
At the end of the appointment I asked the nurse about the missing drugs. After a bit of tooing and froing she went off to call the specialist nurse.
She came back and told me I was supposed to have those drugs and that I “really needed to be on top of these things” to which I replied “I’m sorry I didn’t realise I’ve never had cancer before”.
She said they needed to speak to the doctors, but as it was 5pm they’d probably gone home, so I’d have to wait for a phone call which would probably not be till Monday now, and if I didn’t hear I should ring in.
I felt very small and very told off. It was like I’d been balancing on my tightrope of positivity and someone had just twanged it.
I asked if I should go home now, she said yes and left, and I started crying and quickly left before anyone saw me.
We got in the car and sat in the 5pm traffic leaving the hospital when I got a phone call from one of the specialist nurses saying she’d gone to the unit to see me and I’d gone.
My prescription was at pharmacy and I could go and pick it up now.
So we turned around, went back, and 30 minutes later we were heading home with the right drugs.
I have no idea where the problem with this missing drug happened, but I’m pretty sure it’s not my fault. I’m sure the nurse would be heartbroken if she knew she’d twanged my tightrope. But it sent me off on a bit of a spiral that evening leading to…..
Set fire to my bed
In a bit of a state I decided to go to bed early, light my spa candle and have a relaxing night.
I am sure I shook the match out then put the remainder in the little pot I keep for such purposes.
Then I heard Mr LLL shout “fire, fire” and dive at the bed where the match, or part of the match, had somewhat ironically set fire to the fire safety label on my pillow.
Once the disaster had been averted I checked my little pot and could see no match, so it’s entirely possible I just threw the whole thing over my shoulder because my brain was in such a state.
So I sat on the floor next to the bed and cried about how I was useless and couldn’t even manage to light a candle without setting fire to myself and was completely unprepared to deal with such grown up things as finding a dentist and taking tablets.
So brave. So very, very brave.
Don’t worry, I had a lovely nights sleep and am back on my tightrope. Plus I have this delicious positive mind oil to help me.
And that was another eventful week in my life.
How was your week?
