Really hope everyone is well and enjoying the small glimces of summer...
Have had the best week since this whole thing kicked off :D Had been quite rough, and turns out my haemoglobin count had dropped to 8.6 (should be above 11.5) which might explain things! So had a blood transfusion on weds and been put on a two week course of steroids. Blood doners are amazing, not knowing where ur bloods going but that it can make such a huge difference to a strangers wellfare is incredible. I can't express how AMAZING it is to enjoy food again after 4 months of dreading meal times-i just keep eating and eating! I almost feel as if if i stop, it'll go away again... So praying for some weight gain when i go in tomorrow for last lot of chemo to make the nurses happy. They're all so sweet and motherly (think i'm a bit of a novelty being under 50 and all...)
Treatment wise, plan is last big chemo tomorrow but staying with weekly baby chemo for the time being, which is fine by me as apart from hideous rash and crazy toilet time (which i now accept as the norm!) it has very few side effects. Will hopefully be booked in for scans within the next 2/3 weeks, then gotta wait and see. Ideally once we get the results, go away for a week or so, then take it from there. Dr Cool was discussing the possibility of radioactive beads and probes and things as an alternative to surgery (cos my spread is accross both lobes of the liver) but all will depend on the scans. Not looking forward to that waiting period between having the scans done and waiting for the results, but it will be nice (HUGE FINGERS CROSSED) to know progress is being made and its ass is being kicked.
Apart from the excessive obscene eating, recent highlights have included another trip to the zoo with chris, naomi and penny. Was very lazy and got pushed around in a wheelchair for the day, which to be honest esp as this was pre transfusion, was the only way could have done it. It was such an insight-the number of kids that stare at u and people that leap out ur way...was also at eye level with these scary free roaming turkeys that were somewhat unnerving!
Have also been driving, which is a huge sense of achievement and just wonderful to get a bit of independance back. Drove for a lovely pub lunch with manisha yesterday and then to woburn for tea. Did fall over in the tea shop which was hugely cringe worthy, but thankfully hardly anyone saw! Also been out for meal with mum and dad-just SO good to enjoy food!! Ooooh and managed to go shopping too- 2 shops, 6 items, not passing out-result!
Anyways think i might just go drive and get a mcflurry-how exciting!!
Sooooo much love, and thanks again for all the incredible support. I couldn't do this without you guys.
Claire xxx
Hey that is so great that you're able to eat and enjoy it - must feel amazing (and I bet your parents are pleased too!!) - and brilliant about the driving - this transfusion sounds like magic dust or something!! What was in it? Lots of love and post on the way!! :)
ReplyDeleteHi Claire, lovely to see a picture of you, how pretty! Just wanted to let you know i now have my chemo buddy. I can't obviously divulge any info, but they are British (which is cool) and they are a child (which, as mother of two, means i am more than comfortable). Will keep you posted as to how it works out and off shopping tomorrow to get lots of bits and bobs. I think the key will be, to be as organised as poss, and i have therefore decided i will post a small parcel every Monday and Friday.
ReplyDeleteI hope you get that holiday soon and sending you more of those positive vibey things. julietx
That's wonderful news juliet! I'm sure all little bundles will make the world of difference, especially to a child :D Do keep me posted as to how it all goes, haven't signed up myself as have been blessed with so much post already (thanks again btw naomi!)but just think its such a worthwhile idea.
ReplyDeleteLots of love xxx