Tag Archives: creative

Chemo Finally Starts, Plus Some Stir Crazy Ramblings

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I know all these updates and changes of plan that I have been posting recently have seemed a bit absurd and discombobulating but I can finally come to you today with my official treatment plan!
My current doctor (his name is Charles for future reference) told me that he has written up all my drugs for the next month which is very efficient and good of him!
Earlier on I had a lumbar puncture which means that there is currently a drug called Methotrexate happily floating around my spinal fluid and preventing any leukaemia cells from growing in there. Tomorrow I have two doses of IV chemotherapy through my Hickmann line and Friday brings the lousy lower back injections but thankfully after that I will be free until next Thursday!

I’m hoping that in the space where there is nothing happening they will ship me off home again for the weekend or at least grant me some day leave so I can go for a walk in the New Forest or a spot along the docks in Southampton we found once.

My immune system is currently at 7.8 neutrophils which is well within normal range and still so high that I haven’t got used to it so I’m currently feeling optimistic that it won’t drop too fast and I won’t be stuck in my prison cell too much!

Today everyone seems to be feeling a bit tired and listless which makes us good company for each other, when our moods coincide we know how to be friendly but not get on each other’s nerves because we all understand how the other people feel! I think these days are worse for our relatives as they don’t know how to cheer us up or that actually sometimes we just want to be down and lazy and can’t help being snappy at you!

I’m currently writing letters to people to alleviate boredom and feel more creative so if you’d like some correspondence (well really just me rambling on about nothing and doing some truly horrendous sketches) please go to the “ask me” page of my blog and fill in the form with your address as it will be emailed straight to me so no one else will see it and you’ll be giving me something to do! Even if you think I don’t remember you or it would be weird- trust me it won’t! It’s really lovely for me to see that people read the blog and care, some of my most appreciated messages have come from the most unexpected sources so don’t doubt how much even the little things mean!

Hope you are all enjoying the Easter holidays and don’t eat too much chocolate…
who am I kidding there is no such thing as too much chocolate. Stuff your faces!

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In Which Bedpans Are Misused and Good News is Delivered

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My clotting wasn’t right again today so the lumbar puncture had to be cancelled again. However, my levels are slowly improving so we are hoping we can go ahead on Monday.

I have had some good news today as they have changed the treatment after the results of the 2011 trial, meaning that now there is less blocks of chemo that we have to go through. Ed was over the moon as he thought he was coming in for a long stay today but instead they have put him on maintenance and sent him on his merry way to live almost normally again!

I’m doing a lot of lying around in bed feeling sorry for myself at the moment, hoping this is just a phase and it will pass as feeling helpless and demotivated is not fun. Earlier we got a bit creative with the bedpans as I am not allowed to have a full on bath, mum tried something that she does with her patients back home… filling them with warm water and shower gel to give me a relaxing foot bath!¬†Admittedly she does it for her patients in a wash basin but we had limited resources!

(pause writing for heart scan)

Well that was interesting, had to stop blogging so they could scan to check my heart function. This involved me stripping but staying covered under a sheet and a quite young male nurse/doctor shoving a probe around my chest. Am now covered in pesky ultrasound gel but at least I know my heart is healthy! I’ve been snoozing ever since he left (why waste the opportunity as I was already tucked up in bed!) but one of the nurses is going to get me playing a board game down the other end soon to make sure I’m moving around.