Ok, so it’s not been quite a year since I last posted. But I thought “This 9 months I…” might make people think I was pregnant, which is definitely not a thing.
If you’ve been here a while you’ll know the story up to know from my sporadic posts. If not, here’s a quick catch-up.
In September 2020 I hurt my back lifting weights. It did not get better until eventually I couldn’t sit, walk, or eat with a knife and fork. Eventually, in May 2021 I got an MRI which led to me being wheeled into A&E with a collapsed vertebrae in my lumbar spine. A month later after many, many tests, I was diagnosed with a Blood Cancer called Multiple Myeloma. Multiple Myeloma is incurable but can be treated to keep it under control. I went through months of treatment on steroids and chemotherapy. Gained 3 stones from steroids, inactivity and comfort eating and had some very annoying side effects like fatigue, random rashes, eye infections and bloating. It was a tough few months. But they got tougher, which is why I eventually ran out of energy to keep updating my blog.
But I miss it. So I’m back.
Now we’re up to speed. Here’s what I’ve been up to over the 9 months…..
In a fit of steroid induced energy I decided that October was an excellent time to completely redecorate the bedroom, rip up a carpet and wallpaper a wall, something I had never done before. All with a broken back.
It also involved removing woodchip and the occasional small chunk of plaster, which in true bodge it style I filled with stuff entirely not designed for the job and the wallpapered over it (see also: The hole in the dining room wall that I put masking tape over and painted.)
Please bear in mind that I failed to remember to take good before and after pictures. The before picture is artfully taken for an old blog post for which I had deliberately bought flowers and tidied up, whereas the after picture was snapped on my phone before I’d trimmed the edges of the wallpaper or properly arranged things. It looks better, I promise.
The bedroom is now a much more pleasant place to spend time when I am so tired I go to bed at 8:30.
So, in 2021 Cancer ruined a birthday because I’d just got out of the hospital, and then it sort of ruined a trip that we had rebooked for our Wedding anniversary after Covid ruined it in December 2020.
It was just a local Shepherd Hut, and we originally booked New Years Eve 2020 as we thought it would be nice to sit and watch the stars with some champagne, then of course we were all locked down (I wonder what Boris was up to for New Year). So we rebooked for our anniversary in November 2021.
Then they told me I was booked in to have a central line put in on the morning of our anniversary. The procedure itself was ok, but actually having the line was terrifying. I was worried I’d get a hideous infection, or something would move and I’d bleed to death. There was leakage of blood around the line, that no one warned me about, so instead of a nice relaxing evening in a Shepherd’s Hut, I instead spent the whole evening wondering if I was about to die. So yeah, thanks Cancer. Look away now if you’re squeamish and don’t want to see my blood-covered central line.
The purpose of the aforementioned central line was so that stem cells could be both collected and returned through it. It’s a total pain to have. You’re not supposed to get it wet, so no swimming and showers and baths were a total pain, as was finding any clothes that went over it.
To harvest stem cells I had to spend a week injecting myself in the stomach with growth factor to stimulate production, which was also a faff and made my bones ache a lot. I didn’t know what bones aching would feel like. Now I do.
Once that was over I then spent 2 days as an outpatient having all the blood drained out of my body through 1 tube, the stem cells filtered off, and then returned through the other tube. The machine didn’t like me much and kept beeping. It made me feel a little nauseous and there’s some stuff in it that made my calcium levels drop which meant I drank a lot of milk, which is no hardship really as I like milk.
I also watched the Buffy episode “The Harvest” to entertain myself, mostly because I thought it was amusing to watch it while my Stem Cells were being harvested.
My stem cells were then whisked away by a courier to Cambridge where they do whatever it is that they do to stem cells to turn them into the superheroes I’d be getting back in December.
Oh yeah, thanks for ruining Christmas too Cancer *rolls eyes*.
I was admitted to hospital on the 13th of December just at the height of whatever number Covid wave it was we had in December. So that was a fun place to be when they were about to wipe out my immune system.
On the first night in I took this photo, before I’d been given any drugs to make me feel awful.
The next day I had high-dose chemotherapy, which immediately made me horribly nauseous. The day after my stem cells were returned. I was immediately nauseous and started taking tablets for it, but it didn’t really help.
Then I was moved out of this super bright room into one that was a more traditional hospital room, but was better as it had a window. Seeing the outside when you’re trapped in a room is a very good thing.
I don’t have that many photos from the hospital, it was very boring. I was extremely fatigued, so tired I had to take a rest halfway through having a shower. Visitors weren’t allowed so Mr Gem just had to turn up, drop off my clean clothes at reception and take my washing home.
My biggest problem was nausea. I couldn’t eat and basically lived by nibbling pringles and celebrations all day when I could. They put me on a syringe driver which is a little needle that goes under the skin and delivers anti-nausea medication. You have to lug it around and not get it wet in the shower. They gave me a little festive bag to keep it in.
When this also didn’t really work they eventually gave me the really expensive drugs. Something called Aprepitant, which did the trick for a while.
I was in the hospital, in isolation, on Christmas Day. I made my own bed as the nurse was grumpy and said they were short-staffed and busy. Then they put a Christmas cracker on my lunch tray which I pulled on my own before I ate 1 spoonful of custard. Can you hear the tiny, tiny violins playing?
I also had a very nice Zoom chat with lots of friends and family, so that’s ok.
Before New Year my blood recovered a bit, and I was discharged,. I was determined to have a glass of champagne at midnight. I didn’t. I was in bed by 9:30, possibly the first New Year I haven’t seen in since I was about 7.
Ah yes, the big chemo finally did for my hair. I shaved it off before I went into hospital so at least when it went it was tiny tufts I pulled out not huge horror movie-esque clumps. I did look a bit like I had mange for a while though.
Then by mid-January, I was completely bald. I didn’t hate it as it happened. Some of my eyelashes went too, and I quite liked how I looked with falsies. I was also so pleased I’d had the lovely Coveted Beauty tattoo my eyebrows on in the Summer!
I did buy a couple of cheap wigs, but actually, I couldn’t be bothered to wear them. It’s not like I was really going anywhere, so I mostly stuck with scarves or turbans.
This is my favourite scarf, super dramatic.
We’re getting near the end now. We’ll skate over the dullness of January to April when I was fatigued, and nauseous and my hair was slowly growing back. It’s May, and I’ve started to get a bit of energy back. I’ve started on my maintenance treatment to keep the Myeloma at bay for as long as possible, and then it was our birthday! Mr Gem and I share a birthday for those that don’t know.
We went out for cocktails, and this time we went on a trip that was rescheduled from lockdown in November 2020, and then again from lockdown in February 2020, and then again from June 2021 when I was on treatment. So this one had a lot to live up to.
Thankfully it delivered, and cancer did not ruin it. We stayed on Elmley Nature Reserve in Kent. It was stunning. I had an outdoor bath, which was something I never knew I needed to do, and we watched cows for several hours.
The cabin has fully glazed doors at the end that face the sunrise. Mr Gem woke me up absurdly early as the sun was coming up. Then he went back to sleep, and I sat in bed and watched the dawn. Then I closed the curtains so we didn’t boil and went back to sleep myself.
And that sort of brings us up to date. I mean, a LOT more happened since last September. People came to visit and I bought some new frocks and went out for brunch and all sorts. When there are 9 months to cover we have to stick to the highlights.
I went back to the orthopaedic surgeon, and after much discussion and dragging in of the actual consultant because I scared the registrar it was agreed my spine was unlikely to collapse any further as it had already collapsed as much as it possibly could, and therefore I could go back to exercise. Pilates, Yoga, swimming, and, when pushed, cautious running, maybe on a nice cushioned treadmill. Treadmills are the devil’s work, so instead, I am trying a nice cautious couch to 5k and good running shoes.
I’m also doing Pilates, Yoga and swimming at hugely expensive gym at the end of the road. I’m getting there on the exciting new bike that my Roller Derby teamies bought me because they are awesome people. I did fall off it the other day, but nothing was injured, mostly because I wasn’t actually moving I was just too stupid to put my feet down when I stopped.
So, I hope you will join me for the continuing adventures of Gem. The eagle-eyed amongst you might have noticed I’ve updated the site and got a new logo. At some point, I’ll change the domain name too, but don’t worry, this one will still get you here. I just wanted to call the site something a bit more general for my future ramblings.
My Cancer was caught early, so hopefully I’ll have a good 10-15 years left, and who knows, they might cure it by then. But in the meantime, I’ve a life to live, and there are exciting things I want to make sure I get chance to do. I hope you’ll come along for the ride.
Oh, and if you don’t already, feel free to come and follow me on Instagram. I update my stories there a lot. If you have any questions about Myeloma, how to tie an epic headscarf or where that outdoor bath is feel free to pop me a message.