You have cancer?
Yep.
What kind?
Multiple Myeloma.
What's that?
It's a blood cancer. Actually the real shit happens in the bone marrow. Some naughty plasma cells overproduce and grow too big and prevent white and red blood cell production leading to a suppressed immune system. It also sucks the calcium out of the bones and can really fuck the internal structure of the bones up.
Are you going to survive?
Well...at first I was afraid, I was petrified. It's a well known disease with a tried and tested treatment approach. Survival is about 99%, although the disease can return. It normally affects older people in their 60s. My body is strong and I'm young, so I'm going to get through this.
What's the treatment?
- 4-6 cycles of a trio of drugs: bortezomib, steriod, thalidomide.
- Stem cell collection (chemo drugs to stimulate stem cell production, then frozen).
- Stem cell transplant (autologous - self transplant).
Where are you in the treatment now?
I'm midway through the 5th cycle. I go for the stem cell collection next week, on 10th November. I'll be in Debrecen, Hungary. I'll be there 12-18 days. The chemo will give me smooth cyclists legs and I'm hoping my ear hair is going to fall out too.
In January I'll be going back and getting a big 'ol dose of chemo which will send the remaining myeloma cells packing (hopefully), but will reboot my immune system. I'll be in a sterile room for a couple of weeks with no visitors, then home. It'll take about 3 months to fully recover.
What causes it?
Who knows? I know how it started:
I'd been suffering with back pain since January and had got pneumonia twice in 3 months.
At the end of May, I got pneumonia again and had really bad back pain. I was rushed to hospital where I was treated for pneumonia and diagnosed. I got out at the start of July.
What happened with your back?
The disease broke down the structure of my vertebrae. The result is 3 broken verebrae and a slight deformation of the spine.
Anything else?
I lost almost 10kg and spent 5 weeks in bed. I couldn't walk. I had to get physiotherapy to get me on my feet again. And a psychologist to help me through the tough times.
How are you now?
I'm doing well. I put the weight back on. I'm riding my indoor bike, taking long walks. Working part time from home and feeling good emotionally as well. In June I'm going to Sweden to take part in Vätternrundan, a 300km cycling sportive. I'm looking forward to life.
Is there anything I can do to help?
Probably not. Although...
- I like hugs. Virtual ones are good too.
- Recommendations for books, films, TV series, games I can play on my iPad etc are great for when I am in hospital, especially when I won't be allowed visitors.
- Take the kids off our hands to let Katie get some rest :)
- Don't feel bad for me or feel you should offer to help. It's okay not to.
Can I contact you?
Sure.
- Hearing from people is nice, but be aware that I can't always reply in good time.
- Don't hold back writing to me if you want to but just don't know what to say. Just jump in and tell me how your life is going, it's good to hear about you too.
How has Katie been handling it?
Katie has been a superstar but refuses to accept credit for anything she does claiming "what else would I do?". She's right, but I still think she is a superstar. She visited me for hours every day in hospital, stopped working to be there for me, brought me fantastic food, helped with the doctors, communicated with everyone.
You made it this far. It wasn't that short was it. I haven't even got started yet! Want to read on? Here's the longer version.
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