Saturday 25th March: my left arm swelled up in the afternoon. I went to A&E. They did an ECG, they checked me out, they told me I wasn’t having a heart attack and it was probably muscular, so I went home.
Sunday 26th March: I was lying in bed and my arm swelled up again, this time with radiating shoulder pain and difficulty taking full breaths. Fun fact: trying to get a taxi in Biggleswade at 0100 on a Monday is hard. They did an ECG, they checked me out, they told me I wasn’t having a heart attack.
At this point I asked if they had ruled out a clot. I work from home, sat at my desk, and most of my hobbies consist of me being at home sat down – I’m still fairly fit but I could definitely do more exercise – clots aren’t an impossibility!
So they did a chest X-ray.
We’ve found a lesion in your chest
It turns out “lesion” translates to “10x13cm unidentified mass”.
At first it was unclear whether it was cancer or not. No obvious positive signs, but absence of evidence isn’t the same as evidence of absence.
Then the PET/CT came back.
Then there was a chest biopsy, an angiogram, a venogram and a bone marrow biopsy and a bunch of X-rays.
Then there was waiting. Lots of waiting. That sucked. Not knowing if I should be planning my wedding or my funeral.
Primary Mediastinal B-Cell Lymphoma.
Or, more casually, “cancer, but fortunately one that tends to be fairly treatable”.
It felt very weird how good the diagnosis felt – abstractly completely understandable, but viscerally weird – finally there was a name, a thing, a plan, and it was better than a bunch of potential feared alternatives.
So what now?
6 cycles of chemotherapy (R-CHOP 14) followed by radiotherapy – around 15 weeks of Stuff overall. One down, five to go!
I’ve not looked at detailed stats, but anecdotes are long-term positive, and that’s what I want to focus on.
Short/medium term, it’ll probably suck, but hey, definitely worse alternatives!
Losing my hair? Fine, saves me hassle of arranging haircuts, and I’ve always wondered what I’d look like bald.
Fatigue? Hey I have a comfy sofa
Suppressed immune system leaving me at risk of neutropenic sepsis requiring me to constantly monitor my temperature / any infection, and get IV antibiotics within an hour if anything shows up? Yeah this is a bit terrifying.
Wedding? Speaking engagements? Conferences? Work? I’m taking things as they come.
How can I help?
Thank you. I’m overwhelmed by people’s generosity and concern.
Realistically I’ve no idea what anyone can do, but the offers are all appreciated, and I’ll let people know when there are specifics I need.
We’re fine for shopping and general Stuff. Visitors would be lovely in theory, but I’m immunosuppressed and freaking out about it a bit, so will probably be maintaining a hermit-like existence for a while.
Entertaining GIFs and general internet chat are probably the best things you can do that will always help! “Three months” is both “not much time at all” and “wow that’s quite a while”, so yeah…
You’re blogging this??
This is going to be a crappy way for some people to find out. I’m sorry. I don’t think any way is “nice”.
Telling people individually is hard, especially when I don’t know what’s happening; I can’t reschedule things when I can’t make any plans. “Keen for dinner, but not right now, sorry, chemo” is a bit…brutal.
Not telling people and obliquely avoiding it doesn’t feel good; I’d want people to feel open with me.
Plus, it helps me – so I’m blogging about it, talking about it, etc.
Everyone’s been fantastic, thank you.
I’ve been seen by amazing doctors and nurses and other NHS staff. People around me have been wonderful. I am incredibly fortunate to be surrounded by so many fantastic people, as professionals and as friends and as family.
Particular thanks to the staff of the UCLH Haematology ward where I spent 10 days; their care, help, reassurance and more was invaluable.