Recently diagnosed

Phil, been thinking about you this morning, hope all went well, thanks for being my trailblazer for cycles 5 and 6 xx

So looking forward to having my sis and nephews up for the weekend, we are getting together with my other sister and brother on Sat so all four siblings and all the cousins will be together for the first time in ages!

We are going to the farm for lunch so I won't be cooking for the whole gang, there will probably just be 9 or 12 of us for tea, depending on whether Leeds sister heads back after the farm or stays. Brother only lives half hour away so will be sending him home after farm, love him but not catering for 16 in cycle 6!

Hope everyone else has a great weekend, don't expect I'll have much time to post. Will check in to see how you got on though Phil.

Love Jakki xx

Hope today is uneventful, Phil, and the following few days are too, and you get to quietly celebrate the last doses! 

Jakki, hope your weekend goes well, my it sounds busy plus olus! But will be good to see everyo e together! 

Mark,  Daisy, Cezza, Cee, Clare, Tom , hope today and the weekend is kind to you all

hugs xxx

moomy
                 
 - thanks. feeling a lot more ... setled today. and, maybe, even, well, kinda 'normal', - hoping maybe for once a more perminant state of such, rahter than a bouncing up day, to crash down again tomorrow....

Phil!; final one! final one! - that well-deserved drink isn't far away now; hoping the final infusions are as kind as possible for you.

Bit of an odd day today, in some respects.
Actually slep, which was nice; woke about 7, supprised to not hear tremendous noise outside from the traffic/school, and somhow fell asleep again, dozing until about 9.

Decided I was feeling 'stable' enough to try it again, so took a half dose (5 MG) hydrocortisone.

Up shot of which, I didn't crash hugely, and so got stuff done, in the morning; took down old shower curtain, put new one up, threw old shower curtain plus towels etc., in for a hot wash. pottered about, did a few other things.

Then, a very odd experience; felt really nauseous!; came on quite sudden, and was sufficient that I was in half a mind to run upstairs and get to the bathroom. concentrated though, and made it vanish; gosh; if that's the feeling those of you regularly get, who get the nausea side-affect, then... AWWWW! that's horrible; really just not had anything like that level of 'feeling' nauseous whilst on the chemo. - not entirely sure what bought it on; I'd skipped breakfast, so maybe just that, or, perhaps teh hydrocortisone for the secondary Addison's, has been doing a job of hiding up chemo-nausea without me realising; although, of course, I'm now, err, 22 days or something since the last infusion of chemo I think... - it can't have been anything too worrysome, as I did just manage to block it away with  my mind, which is a neat trick that I have no idea how I do... - bit like converting pain into colours on the skin perhaps, to make the sensation change from a horrible one, to one that doesn't cause discomfort... dunno...

Was starting to feel a bit low on hydrocortisone, so took second, 5 MG dose a  little early (ment to have majority of daily dose earlier rather than later in the day anyhow, so that makes sense), then had breakfast/lunch; another good thing with lower morning dose, I don't immediately need to eat soemthing, in order to quieten down its huge peak in my blood, I normally get on taking the higher dose. - having said which, my dose at the higher level, is still a pretty low daily dose, which means, my new, lower dose, is a seriously low daily dose...- But everone always varys so hugely with hormone 'normal levels' from person to person...- often by several hundred percent/fold differnce - E.G., when I ran the infection, and was in hospital; I needed a 40 MG dose a day, and my body did indeed fell like it needed that; I then went down again to 30 MG, post-infection, before dropping it back to my starting dose of 20 MG per day; and now, the new lower dairly dose, is 15 MG; so such tiny variations in absolute amount, make a pretty damn big differnce, biologically... - I expect to increase my dose, as soon as radiation starts...

Well, if I fancy continueing with my productivty today, I've an.... amusing task to consider; getting these neuropathic fingers and hands, coordinated sufficiently to put up a new curtain rail! - think I've ruled out using the electric drill as just too dangerous right now; so it'll take an age, having to use the hand-drill, but... probably less likely to lose a finger, or, indeed, drill through the window glass by mistake! - Chemo-fatigue, though, just wants me to go lay in bed, with the laptop.... but... my 'normal' brain wants me to get on and do stuff... not sure yet which way I'll go.... a cuppa tea first, to decide I think!

Hope everyone else is having a good day, whether that's just not feeling sick, managing to get out, or, doing high level building work!  

Hey all....hope everyone is doing ok.  I am completely floored following 3a...feels like I've been hit by a truck!  I've heard chemo has a cumulative effect but I didn't expect quite so much fatigue!  Tips anyone? 

Dxx

Hi all

Just on the way to give thanks to Buddha (in Tottenham court road) for everything now treatment is ended. Hope all are well. Mouth feeling alright, but I'm heavily drugged up the whole time so I can't notice too much haha. My saliva feels a bit thick so maybe my normal glands are coming back. I'l l try cutting everything down a bit from tomorrow.

Daisy I'm sorry to hear your knacked :(. Basically you'll have good days and bad ones, and the key is to jsut keep trucking on, as a great man once said. It really turns into a nihilistic slog, but time always marches on and just bear at the back of the mind that you will get there :) treat yourself every week, and don't expect too much of yourself okay? I was quite out of it once I got to three too, but you're halfway! Find some way to celebrate for us :)

Phil - preemptive yay!! Hope everything went well today. Looking forward to hearing from you.

London is sunny!! I'll pray for you all at Lord Buddha's house.

Tom

Daisy; I got teh fatigue bad, - I always assumed I got extra seeing as how I missed out on my share of the neausea thing... - also, certain according to William; I was worse round about the start of my third cycle, as compaired to the end; yeh, things did mount up more, as I got to the final cycle, but, it was more in the middle, I think, I was at the worse, in terms of having such fatigued days, I honstly couldn't leave teh house, or waslk as far as teh nearby shops; yet, on other days, I'd happily walk the nearly an hour to hospital, have the infusions, then walk home again!; it just seems to vary so much infusion to infusion; make the most of it, I recon, when you can, and the rest of the time... - well, depends how you prefer to do things; 'rest' seemed to  be the advice I got from nurses etc; so I ignored that, and tended to jjs push through the nfatigue, even when at its worse, - mind, I think my steroids for Addison's disease, kinda messed up any real chance i had, to say, nap or anything; I did most of my chemo not sleeping at all even at night, due to my insomnia getting even worse, durng chemo... - hope you can find something that works; I guess a combination of trying to keep active (exercise does seem to help; I always felt better, those days I did manage to force myself to get outside, even wehn I didn't feel like it), combined, wiht, rest when you can, or have too...  - as Tom says... it really becomes a slog, and a sort of... faith thing, just continueing and knowing each day, each infusions, is a move closer to the days of it all finally being over! - I even found myself today, relenting a bit on my over the top hygine and steralising everything at home! - maybe normality is less far away than I think, even if I've radiation to get done with first, now the chemo itself is gradually already fading into a thing of history; had such an odd feeling; Wednesday sitting in one of teh chemo chairs!; just to have a nurse flush my port through, as it isn't being used anymore, of course, for the chemo drugs... - but, just being back in that chair!; felt so ... weird; but already a kind of hazy, distant memory of something deep within my past!

Have a good kip Phil, celebrate when you feel ready, it'll be worth the wait! Won't do anything silly, all kids are healthy at min and none who show signs of bugs will be coming in the house! Another reason to meet at the farm, I can scan for signs of snotty noses! Xxxxxxxxx