I wonder what would have happened if my first thought on that day I got diagnosed 5 years ago, wasn’t to immediately start a blog and write about it? Is that one of those sliding doors moments? Probably not, because I’m sure the thought would have occurred to me eventually, even if I hadn’t gone straight from hospital that day, via two pubs and a rooftop bar, straight on here to tell everyone everything.
It started purely as a way to keep everyone updated at once, to disseminate important information as to what and where and how many. Especially handy when a lot of your people are on the other side of the world. Little did I know that five years later I would still be logging on to put my little thoughts out into the world. And that so many of you wonderful people would be there, at the end of the chain, reading my words on your screens. Some of you from that very first day (thank you) and others who have joined along the way (thank you). We’ve been through a lot together, you and I. And I can’t tell you how grateful I am that you’re still here.
Well, are you ready for our next stage? I bloody hope you’re going to come with me because I don’t know how I’ll do it on my own. To be perfectly honest. I don’t know how I’ll do it full stop. But we seem to find a way, don’t we.
I spoke to my Onc today and the MRI clearly showed progression. I knew it would. Actually, I was worried it wouldn’t and that I’d have to somehow convince them to scan me again immediately, because I know the cancer is growing again. So I guess that’s good that the scan proved it… I don’t know what next steps are, but they’re thinking radiotherapy to hopefully stop it for a few more minutes and allow the accompanying symptoms to ease off a bit. It’s just a matter of working out the order of which to play our last few cards now and it sounds like radiotherapy, then maybe a bit more chemo, then the good ol TKIs.
Can I just though… take a minute here to tell you all how much the idea of radiotherapy terrifies me? I thought the cage in an MRI was bad, wait until I have to willingly put myself in this every day…
Here’s some Google prepared earlier:
I don’t want that, who wants that?! Why does that even exist? WHO INVENTED THIS! WHAT DID I EVER DO TO YOU?!
So please hold any of those strong/brave/etc. words – f*cking terrified is the closest I can think of. I don’t know how I’ll get through it, but it’s the only way of trying to live for a few more months so I suppose I’ll have to find a way (and of course I worry I won’t actually be able to force myself lie encased in that mask daily). I won’t even start thinking about the horrendous side effects of radiotherapy to the face. I don’t have any details yet. They’re in talks to work out what we might try throwing at it next. Osteosarcoma is famously not reactive to radiotherapy, but they wouldn’t try it if there wasn’t a chance it might buy us some more time. So give me that chance. I’ll take that chance. Or at least I’ll try my very best.
Anyway, I had a lovely couple of pints with my brother and niece today in a beautiful local pub, which was a perfect way to spend my afternoon after waiting for that rubbish news.
The sun is shining here and although the grass looks like it’s crying out for some rain, this weather is perfect and honestly, I don’t think it gets much better than this. So please try to go do something that makes you smile because we need lots of those things in our lives.
The Cancer Chronicles 
Well shit… Can they give you any sedatives? Like Lorazepam? I know, here in the states, they can give you something to take before you go in. I’m not sure you’ve every tried anything like that for your MRIs?
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Yeah I take Lorazepam for MRIs but it doesn’t make it any easier… It doesn’t change the fact I’ve got to be tied down in a machine i can’t escape for half an hour so I’m not really sure how they’re meant to help at all… 🤷🏻
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Drugs. Demand Xanax or Ativan for anxiety to help with the Radiotherapy. Screw bravery. Stoned is better!!
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Hey you. That cage is bullshit. The pub looks so so great as do you, your bro, and your niece. Thank you for writing. Thank you for the reminder to smile and yes wow the sun! See you at Writers’ Hour xxx
KK 🌻
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Wishing you all the best. Enjoy the time with your family and the glorious weather.
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Sending you hugs and smiles, Jen.
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Wouldn’t it be possible for you to get on a clinical trial? I read that there are quite a few going on for sarcoma. Has the idea ever been brought up by your doctors? I would have thought there would be some kind of new treatment you could try first as a more promising alternative to radiotherapy.
By the way, you’ve probably never heard of me before, but I’ve been following your blog ever since April of last year, since I happened to come across it the evening I came out of hospital after I was diagnosed with a rare form of blood cancer that’s got a bit less than a 30 % long-term survival rate, and spent a few weeks in hospital so they could stop it wreaking havoc on my system and start me on chemotherapy. They said I would only have lived for a few more months if I hadn’t got treatment for it.
I spent some time that evening reading your blog, often cringing and sympathising with you when I read about your painful procedures. But at the same time, reading it was somehow therapeutic for me in a strange kind of way, probably partly because it’s comforting to feel less alone with a problem, and partly because it confirmed to me that I’m getting off comparatively lightly as regards cancer treatment; at least I don’t have it anywhere near as bad as some people! I had some unpleasant cancer symptoms, but at least the cancer wasn’t causing me pain most of the time; and the treatment didn’t either most of the time; and I didn’t have to have bits chopped out of me.
Anyway, I’m hoping for the best for you.
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that mask looks like something out of a sci-fi torture chamber!
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Hey Jen
Always read ur blog to see how ur doing 🥰 xx
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I still have my mask from radiation. I told myself I was going to decorate it or blow it up or something therapeutic but alas, it still sits in the corner of my bedroom because I haven’t figured out what to do with it yet.
The making of it was worse than the actual wearing it for treatments for me, but it wasn’t my favorite thing. Luckily each radiation session only lasts a few minutes. Sending lots of love and good energy for you!
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I’m really sorry to hear the scan confirmed progression.
There is some evidence that CBT can reduce anxiety in people undergoing head and neck radiotherapy. I’m sure your team will know about this, if it is something you haven’t tried already for the MRI and would like to.
This internet stranger is gutted for you and greatly admires your emotional openness and authenticity in dealing with this horrible and frightening situation and sharing it with us. I wish you as many sunny days with friends, books, music and beer as possible.
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