Just an update on events so far. Well I’ve been in here for 3 weeks now unable to leave my room and so far things haven’t been too bad, not as bad as I feared anyway. My first round of “conditioning” chemo has finished. It was three different treatments a day for five days. There was a bit of sickness some headaches and just not feeling “right”, generally it felt like a hangover just for 5-6 days. Unpleasant but bearable the anti sickness helped a lot, especially the IV one first thing in the morning. All I’ve got now is a nasty metallic taste in my mouth which upsets my stomach a bit but hopefully that’ll clear soon.

All my blood counts are doing as expected more or less and its a waiting game to things to come up to a safe level so I can go home for a week or two which I’m so looking forward too, about 2 more weeks is what we’re expecting.

I gave up with the wifi here and got my wife to get me a 4g MIFI hotspot which has been a godsend for generally passing time but mainly for Skypeing home to see and speak with my wife and son. My wife was ill for a week so couldn’t visit so missed the whole chemo week which she found especially difficult. She’s better now thankfully and visiting again.

I had a bad spell of bleeding and bruising at the beginning as my platelets (clotting) dropped to 2! (The normal range is 130-250 ish) so I had spontaneous bleeding from my eye, nose, gums, blood blisters, bruising……. That was pretty scary but was got under control pretty quickly with lots of blood products. At times I was having several units of blood a day and several bags of platelets too as well as other IV clotting things too, some days I was on a drip all day bar small gaps to shower and that was it. Drs and nurses have been great throughout.

I’ve had loads of visitors family and friends and a visit from BullHeart too which was really helpful, thanks. I’ve not gone too stir crazy yet! I had a moment one evening where I had a bit of a tantrum to myself when I had to change rooms but that’s it, it was weird just nonsense and completely irrational. I’m probably getting a bike and turbo brought in soon, not sure where exactly it’s going to go in this little room but I’ll figure something out. The Drs have said bored is good as it shows I’ve tolerated the treatment ok and things are all on track.

The only procedure left to do before I get out is a lumbar puncture and a dose of chemo into my spinal fluid while they’re there too. We were hoping to do it yesterday but my platelets are still a bit of a pain not rising as they should. It should be something like a base of 40 + 10 + 10 and leave it an hour should equal something like 55 but I’m coming back to 45 ish. A load more blood tests this morning to figure out why, platelet aren’t usually cross matched like blood but it might be that I need them to be, there are a few other reasons too which can be dealt with which they’re testing for two.

So a massive massive! Thank you to all of those blood and platelet donors, you really are life savers!

I’m absolutely determined to beat this and the odds, I’ve been much more positive these last few weeks. Still tough times ahead but we’ll get through and out the other side and will make the absolute most out of life.

Thanks for the update. Good to hear that it sounds like things are broadly speaking, on track.

Apart from the spontaneous bleeding thing – that sounds pretty serious!

It sounds like you are keeping yourself occupied although it must still be frustrating being cooped up!.

I expect a turbo trainer would be a good addition – give you something to focus on & get some endorphins flowing perhaps?

Best wishes for a continued speedy recovery!

Keeping kicking it straight in the naggers Keith.

All the best mate.

I’m probably getting a bike and turbo brought in soon

Like 🙂 There’s some really great comedy stuff on 4od to keep you entertained while you turbo
Sending you positive vibes

4OD? Please, just steer clear of Hollyoaks, if nothing more than for your own sanity!

Really glad things are going well. Keep getting better!

Keep up the good work Keith 🙂

Aye, Hoof it in the slats! Good luck and keep keeping on.

Wishing you a good recovery.

I have a turbo gathering dust in the garage if you haven’t got one already.

Good to hear [ apart from the bleeding ] and best wishes

Good to hear my man! Keep focussed lad!

good to hear mate. 😀

Aye – hoof it proper in the slats!

Thanks for the update, keep on keeping on. You sound like you have a really positive attitude which has to be a benefit, I wouldn’t worry about the odd irrational strop though I’m sure the nurses etc. are used to it and will understand.

Cheers Chris, yeah I’ve got one thanks, I got one for Christmas so I could do a bit over the winter and avoid the weather after my CML diagnosis, but thanks anyway the offer’s much appreciated.

The strop was weird I couldn’t sleep in the new room, it’s not quite a nice as my old room and I was hot and just so mentally settled in the old room I just went crazy sat there by myself and just wanted to leave. I felt like a 2year old having a paddy then it was 3 in the morning with a nurse doing my ob’s as if I’d just passed out. So odd! All good now though thankfully

Sounds like the treatments been generally positive with some dips and troughs and the way.
Hope it continues to get better
Btw you jump-started me into re-registering for blood donation. My earliest local one i could get on to is in April and i will be regularly going from then on

Stay positive, I really hope you keep making progress and beat this thing.

All the best

I’m still pretty anaemic so effort on the turbo will be really limited but it’ll be good to do something, I’ve been given the ok to leave my room (with a mask on) to walk about 20-30m of corridor, whoop

Hoof it in the slats, is a new one on me. The meanings pretty clear though [likes] cheers 😆

Thom I look forward to catching up if you get the chance, bumped in to Rich in radiology and he said he might pop down some time too.

Cheers all

You’re probably getting all the advice and help you can take, but if you aren’t considering it already, maybe have a look at some mindfulness stuff. When I was ill a couple of years ago (nowhere near what you’re beating, but scary to me anyway), it really helped. There’ll be iPad apps and possibly some ebooks if you fancy. Good luck!

mrs_d has recently been through chemo and she got the metallic taste too (different drugs, probably, though). it does go after a while

good luck & get well soon

Don’t forget to get your B12, folate, Iron and vit C.

Should give you the building blocks for your red blood cells.

Get glad to hear it’s going positively!

Err, like wow.

The very best of luck, try to stay positive.

Think Bikes.
Think Beer.
Think spectacular Sunsets.
Think eyes wide open Sunrises.

Hurray my bike is here 8)
For now anyway, the ward sister is not happy about it though she came and had a bit of a go at me and my mate for bringing in. The Dr gave me the ok for it but the sister last night almost took it away. I’ll chat my dr today finger crossed it can stay.
Quick test with bag of platelets on the go

Awesome!

That lawn is looking in need of attention, etc, etc…