Hey!
Hope things are good :) Been a bit of a mental week...
Went into hosp last thurs ( a week ago) to get scan results and unfortunately the chemo has done nada-the scan is practically identical to pre chemo. Dad did ask if there was any chance he was just looking at the wrong one but unfortunately not! Good news is it's not got any worse. On the original scan there were some small marks on my lung bases that we were rather hoping were just inflam or sth, but there still there, so looks like we have a wee bit of spread there, but they're no bigger than they were.
So plan is more chemo (ARG!!!) but with different agents. This time we're trying sth called avastin and another one with a very cool name. Something like rhinotecken. Anyways not going to worry about that for now as having a month off to rest and recoup and try and put some more weight on. As was looking very skinny and battered when went in for results they decided to keep me in for a few days to feed up and medicate up. Turns out my magnesium levels were low so had some infusions for that. Had some lovely visits and got out on tues.
Then over night on tues my hands decided to cramp up into crazy claws and wouldn't relax, so had to go back in first thing weds morning boo. Turns out the cetuximab had decided to also bind to some receptors on my kidneys, preventing magnesium from being absorbed so i just pee i all out, and the low Mg caused the cramps. So, multiple infusions later have been released this eve (thurs) in the hope that it won't happen again. We shall see!
Despite all of this, feeling good in myself (possibly slightly due to steroids!) and looking forward to the chemo break. Will lose my hair on the next lot, so have been planning out some fabulous wig, scarf, earring combinations! Have also managed to put on 5 kgs since last week :)
Lots of love xxx
Thursday 27 August 2009
Monday 3 August 2009
Last chemo tomorrow :D
Hey lovely beautiful people!
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
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
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