A good week and a half on from the beginning of my Flag-IDA chemo stint and I'm starting to feel 'normal' again thank goodness. I had blissfully forgotten how hard the chemo can hit in terms of chemo brain and general fatigue, but luckily those side effects have been relatively short-lived this time around (still a good week though). Others have very nicely filled their places now instead - namely the ones that affect your mucous membranes - mostly the gut unfortunately. My skin is also extremely dry this time round and nails have become irritatingly soft...but other than that I can't really complain! Just a bit more like 'that' hospital scene in the bucket list now is about all! I'm sure you'd all rather not hear about all this, but I don't see the point in not talking about the rubbishy stuff too! I certainly am not looking for sympathy, I am simply just trying to be informative about all the aspects that chemo can affect in life. I've definitely felt more nauseous and inappentant this time around, largely due to the lack of steroids! But fortunately, I have a lovely boyfriend to encourage me through the rubbishy moments, like when I don't fancy the ham and cheese panini I've ordered for lunch (I think that's probably when he's looked most worried about me, since being inappetent is somewhat of a rarity for me!!). :)
It's been a bit of a mixed bag week to be honest. I've been referred again for massages, which have been most welcomed! Maxine really is an angel sent from the Royal Marsden gods! I wasn't well enough to have a massage this Thursday so instead she put together an anti-nausea scent stick for me - which is amazing - bless her heart! Who knew a certain smell could help so much? I was also able to see the physio last week and have a short session in the gym here. By short, I mean 5mins of cycling, some sitting to standing exercises, lunges (with help from bars) and some steps.. How so much can change in a year - this time last year I was doing insanity for crying out loud... But nonetheless, I was still proud to get through my 15min gym session and still be able to walk back to the Teenage Cancer Trust Unit afterwards (with some help from Phil..)!! I had a lovely visit from my Auntie Sara and Uncle Will on Saturday morning too - was great to catch up, but unfortunately was starting to feel wiped out by the chemo by the weekend.
Despite there being only 3 patients in when I arrived on Monday, by Saturday evening we had a good gathering for the Eurovision. The kitchen put on the most ridiculous amount of pizza, wedges and garlic bread for us to try and eat after we'd already had our dinner too! They do like to spoil the inpatients up there! It was very kind of John (the youth worker) to organise it all though, including providing some appropriate decorations! I had just enough energy to sit through the songs at least, but that was mainly only because I was hooked up to chemo!
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| Just a couple of the huge trays of food - the trolley in the distance is also full! |
The family went on holiday to Norfolk for a week that Saturday too, which luckily coincided with me feeling especially grotty from chemo! It does sound like they had a lovely time, truly exhausting the dog to the point where she was not at all interested in me facetiming them when they got back this weekend. Poor thing is pooped! And has an injured leg to boot...
This last week has been fairly uneventful though. On Tuesday, I got moved to a lovely side room on the adult ward, Bud East, as the TCT needed my bed for a newly diagnosed patient who was still yet to receive any chemo. Caroline, the ward sister, was so apologetic, bless her, but I really don't mind! For a start - side room + en suite is a pretty nice change - but also, I completely appreciate that there is another patient, who is probably a lot younger than me, whose need and their family's need is far greater. And I'm sure will appreciate the facilities at the TCT a lot more than me at the moment. As a newly diagnosed patient, I think knowing you have those facilities is a great comfort to the horrific blow you've just been given. At least, I know it was for me. And anyhow, I'm more than happy in my own company :) it's just like being back at uni to be honest! Well, minus the great housemates obviously!
Phil came to visit on Wednesday and Friday, which was really lovely! And Ellie came to visit Thursday evening, which was equally lovely - however, I put a slight dampener on the evening by firstly getting chest pains (that luckily went with some Gavascon - slightly embarrassing...) and then, after sending her home as I felt so tired and feeling terrible about it, had rigors. Oh yes, cue the start of another nice neutropenic sepsis. The irony was I had literally been explaining the symptoms to Ellie not two hours earlier! My nurse was amazing and got the doctors to get IV antibiotics and paracetamol into me within an hour. I then had a nice night-time chest xray, and after some further rigors, and several sets of observations, I did manage to get a few hours sleep.
I failed to mention in my last blog about the beautiful blood clot in my armpit that they found on ultrasound when I first got readmitted. I have since been on Tinzaparin (and will be for 6months...) to thin my blood and break down the clot. But since my chest pains on Thursday, they were a bit concerned about me having a pulmonary thromboembolism too (despite the pain going after the Gavascon...). A CT on Friday actually did show some small clots in my lungs...oh yay...but luckily I'm already on the treatment they give for them, I just have to have a higher dose now.
Overall, the good thing this week is that my white blood cells literally plummeted overnight and were technically unreadable on Wednesday! So chemo did good there, they are still low and so as part of the protocol I receive GCSF from now until my counts are above 1 again. Once they're up I'll be allowed out for 7-10days-ish - woop! Haemoglobin and platelets have both been pretty low too so have been receiving blood products to up these fairly regularly too - the platelets being important particularly because of the blood thinners I'm on. I'm also on two IV antibiotics still to cover me for the infection, but luckily I haven't had any more rigors or temperature spikes since Thursday evening - and we are hoping to keep it that way! I'm also feeling a lot better and have a bit more of an appetite thank goodness.
Mum and Lot came up to visit today. Was lovely to hear all about their holiday and have a catch up, but they both did look very tired bless them! Sounds like Lot didn't get much sleep over the week thanks to Flo being a bit of a pickle! The remainder of my weekend has largely been taken up by Breaking Bad, as I imagine tomorrow will be too!
In the mean time, I hope people don't mind me not giving my contact details at the hospital out on here since I don't know if I'll get moved back to TCT or not. So, if you'd like to send me anything it's probably best to go to my home address, which if you don't already know you can personal message me for on facebook :) And, sorry and thank you to everyone who has wanted to visit, but I've unfortunately had to turn away for one reason or another, for being so understanding. I do hope to catch up with you all soon now I'm feeling somewhat better. :)
Much love to you all xxxx
