Recently diagnosed

Mark, please don't forget, they need to take your leg pain seriously! ABVD can cause cramps, BUT there is also a small risk of DVT too......

Jakki, that's wonderful news! Go, Gav, go! 

Phil, so sorry 6a hit you so hard, hope it's just for the odd day though, and you come back up smiling soonest! Cricket over the weekend? 

Tom, hope you are coping, does the swallowing improve a touch through the weekend? Any dodges you find which can help others following on? 

Sending you all hugs xxx sorry I've been awol today! 

Jakki, moomy
 = thanks. I know your right...  - I'm pretty sure it is just cramp though; either ABVD related, or, I'm starting to think I've gone a bit overboard on my fluids recently; lots of fruit juice, for nutrients, vits, fibre etc, and way too much tea, and both, just for fluids, for flushing out the drugs, etc... - Having desiphered the discharge letter from end of Jan/start of Feb, and had my partner, karin, who's a MD, E-mail me back from Sweden, my fluid intake probably oughta be lower; my theory, years back, regarding my pituitary getting dammaged in my road traffic accident in 1993, seems to be right... - not only causing the Addison's like secondary addisonian thing, but, looks like it was cause of the seizure I had, because of .... err, its got a complicated name and I've forgotten it.; related to a hormone controlling kidneys and water retention; it all makes sense, but is wildly complicated, and I did almost do a masters in endochrinology; I got accepted, but I did the immunology instead, back in 2001....- I can just about get it all in my head, even through the chemo-brain/fog, but, not quite... its so damn convoluted, how all the hormones interact, and variables etc... but, basically that can cause cramps too; was always kind aprone to them, even before ABVD.... both ABVD plus the hormone thing... - lucky I'm not getting more cramps, TBH.... - I'll definately get it looked at Wednesday, though, in clinic.

sorry, everyone, for my post earlier. that was so negative, not really 'me'.... - day 9 in my cycle; which I kinda keep forgetting, as it was my last one, I think I subconsciously thought 'that's it, its all done with', and kinda keep forgetting the cytotoxic drugs are still working their magic; quite a lot, at the moment, actually, and I think a combination of that, which is definatly 'up' on cycle four, compaired to the cycle 3, with the somewhat shock, of finding this lost discharge letter, hidden away, at the GPs, un-read and un-acted on...

-- I took advasive action, this evening. with a bath, of course. followed by cammemile tea and cream cakes... and feeling a lot more relaxed now, especially as I've made sense of everything in the discharge letter; one somewhat worrying bit, is their concern, over a  lesion in my cerebral hemosphere, which could be lymphoma related; but, as I've so much scarring there, from my old RTA, plus evidence of 'intrusion' (from the fit, we/they guess), and, as I was 'moving' whilst being scanned apparently, it wasn't clear; hence th eneed for urgent follow up scan; four months ago, which didn't happen.... - Will push for that Wednesday too; the head oncology guy whould have gotten letter from my GP by then....

Tom; hope your still managing food... - isn't there anything else the doctors can do? no magic medacine to help? awww.... and the radiation was ment to be the easy bit... 

Phil; its just th echemo builds up!; certainly did for me, and I only made it to four cycles! - given how I'm feeling now, I'm so not sure I culd have kept a smile going had I been able to go to the six, they wanted me to have (their choice to not, though, due to my getting the random infections, and the fact I had to stop the Vinblastin, already, due to th e neuropathy).

Didn't make it outside today, which was a pity, and probably won't again until Tuesday when William's back here, which isa pity as the sun has been out again, though less than a couple days back; We were going to go to the strawberry fare, today, which they have every year in Cambridge, but, really, I was just so tired, even if I'd forced myself, I don't think I'd have enjoyed it much....

Day two back on the melatonin, so hoping tonights sleep may be even better; also, reduced my final daily dose of hydrocortisone, to 5 MG, from 10, which may help aid sleep; actually, think the lower dose suiting me more already; I think the higher doses of steroids can  make one a bit hyper, and that can't help...

Despite being so tired, at least I did get some things done today, a massive load of towels, cooked three meals, over the day, cleaned kitchen, clenaed a bit in bedroom, and reorganised half the wardrobe/top boxes, starting to ready room for arrival of new bed, Tuesday...- so hope I'm not utterly fatigued then; I'll have to assemble the base, though they're useually pretty easy to do, and I checked out  the construction of the base, carefully, whilst I was in the shop, to see how its put together...

May even try for sleep before 2.30 tonight, - really must, as I've timed taking the melatonin, for about that time...

hope everyones doing OK tonight

Hi Mark, 

hope the melatonin helped and you got a good long sleep! 

Thinking of you all, this morning looks beautiful here, hope it is for you all 

hugs xxx

Hullo all

No magic bullet I'm afraid :( lots of dryness below the mouth all through the night - pretty much a banker that I'll be up at least 3-4 times at night needing to both rehydrate my throat and also to peepee out the rehydration from the previous occasion! Oh well.. only short term I hope.

I also have a big ol' swelling now by my wisdom teeth on the left of my lower jaw that's only developed over the last day or so, so I guess I'd better see if I can get myself referred to the dentist again :( my mouth is in a fair old state now; bleeding gums is now a daily occurrence...I was told it'd be bad during chemo but yeah, just no respite as the rads are going through my jaw. Have a bit of irritation on the side with the swelling now.. I'm going to rinse some salt water in now, which I'm kind of scared about because of the saline thing from chemo UGHUGHUGH

At least I am sleeping now - I was in bed till 11-11:30 both Sat and today... I was never able to sleep in like this during chemo (kept waking up at 9)... think it's a mixture of working every day plus the rads meaning I need a catch up on sleep!!

Moomy - there you go, my summary of how it's going is above :D

Jakki - amazing news :)... they must've heard about your bossiness and thought best to do what you say ;) hehe just kidding, it's so cool of them! 

Mark - nah, nothing the doctors can do; just get the flip on with it, it seems. BUT I do need to see the dentists as I say..

Hope all are well today :)

Tom

Oh heck, Tom, poor you! 

If you are ok with aspirin and aren't on any more painkillers, then maybe gargling gently with some soluble aspirin might help your mouth? Hope you are using the mouthwash you used during chemo, too? Again, I know salt water brings back memories but using it in between as a mouthwash might seem different.....

hope you get some relief, it sounds really yuk! 

Hugs to you and everyone here xxx

The Mucilage has aspirin dissolved in it, but yeah there's a fair swelling in the gum now. UGH

I've taken salt water but it didn't do anything except make me gag a bit lol.... principally because there isn't really an opening to the swelling, I'd guess - it's def not an ulcer, pre-cancer when my wisdom teeth came in salt water helped me loads, it literally popped open a swelling. 

Will have to see if they can refer me to the dentist I suppose.. yet another day off. I've used up all of my sick leave now, so that'll be unpaid, too. RARGH how frustrating.

BUT it's nowhere near as bad as post-chemo, I must stress! Although my throat feels like a desert that's perpetually drying out and my mouth is swelling, it's trifling comparing to feeling nauseous and out-of-sorts after that stuff. It's only because it's all new symptoms I'm going on about it!!!

T

Hi All,

Tom, sorry to hear that you are having so much trouble with the rads, we were warned about mouth problems with chemo but what I've experienced is nothing compared with this. How many more have you got to have? All I can say is the usual "Keep on trucking".

Not a bad day here today, Sun's shining and little wind, damn cold yesterday, not a bad days cricket,quite a good game really even though we lost but at least son had a good game which hasn't been happening for him recently.

I didn't do too badly bearing mind that I didn't get much sleep, got a number of bruises where they tried to cannulate but did manage a good nights sleep last night.  Mouth starting to yuck up now, nothing serious just the lousy taste. What is good is telling friends that I only have one session left to go.

Just seen the weather forecast, doesn't look too bad for most of the week, could be some rain and wind at the tail end.

Hope everyone is having a good weekend, just 2 more to go Jakki, you of course won't have the cannula problems I had but getting this far I consider myself lucky that my veins have held up.

Keep on trucking guys.

Phil

Tom; damn.... well, just lets hope the side-affects don't get any worse, if the docs are all out of silver bullets.... - at least the  radiation isn't dragged out, over months, like the chemo I guess....

Oo. didn't know that about the chemo affecting mouth/teeth...  think mine are OK... well, much the same as they always were I guess, - I'm not even registered witih a denntist since I was a teenager, so hopefully they'll hold up for the duration....

Still feeling very tired and bleh, guess its just the last infusion, and the affects having mounted up; at least there isn't another infusion looming ahead of me (as far as I know).

Blood sugars seem all dodgy today; but I think I've figured that out now; its not to do with blood sugar in a hypoglycemia Insulin/diabetes type way; its connected  with the pituitary dammage, and err, I  oughta try remember the name of it... SIADH I think; its the sugars affecting ossmoregulation; basically throwing some glucose into my blood, to increase its solutes/metabolights, to try draw excess water out of cells/tissues, especially in the brain; to reduce tissue swelling/oedemia, - effectively trying to rebalance the osmotic potential across membranes, to compensate for the kidneys working oddly due to the strange ADH production from the pituitary; well, that seems a logical explination if I go with the SIADH diagnosis given on the hospital discharge letter. - my blood sugars always look normal when they're measured, so I'm guessing it isn't actual hypoglycemia (was thinking it might be, when they were randomly and incorrectly telling me I had  hypothyroidism etc).

Wednesdays clinic might be longer than they think, if we've got the radiation to discuss, plus bloods to see what's going on there, two weeks post last infusion from chemo, plus side affects, including my leg/calf/cramps etc, plus wanting to get some movement or comittment to do something about the scan requested at the end of January/start of  Febuary, to investigate the brain lesion/potential lymphoma. And, of course, wanting to chase up the SIADH; I'm reducing water/liquid intake now, as I think I've gone up too high, and am feeding the abnormal thurst given  by SIADH, and that's possibly accounting for a lot of the brain fog I'm getting, though I guess still  chemo-brain influencing things there too...  Might also account for most of my tiredness, lack of ability to sleep, due to oedima in the brain, - but again I expect oncology/haemotology will just say its not their thing, and pass me over to endochrinology who won't see me again now until the autumn. - getting so tempted to try find a private clinic, just to get some bloods done, so I can see for myself the picture in the  pituitory, and try disect it myself, with the full facts at my disposal, rahter than having to half-guess from symptoms, and vague references from the Drs/hospital letters. - I think the ADH thing is rare enough, that endochrinology won't have measured it, unless they'd magically seen the discharge letter that was hidden away at the GP surgery for the past four months.

Hoping the fluid reduction won't too adversly affect clearance of the chemo drugs, as I'd obviously been ensuring i had a decent intake, to clear stuff form bloods, as one is wanting to do, - going to be hard now, to reduce my tea intake, since I've become such an addict! -  hoping it won't impact too much on digestive system too; but I guess I'm sort of moving away from that now, as chemo is only moving further away, now I've  finished with it, I hope.

Must try get some housework done today; desperately trying to get house as sorted as much as possible, whilst I'm in this  'break' from treatment, just in case I get hit really bad again, by fatigue, from the radiation, whenver that starts.

Two loads of laundry done already, just the actual cleaning to start net; plus getting bedroom as sorted as much as possible, before Tuesday and new bed arriving; must  measure up for the new curtains today too, and then order them in.

hope everyone is having a good day, and enjoying the sun, where you can...

I am a freelance writer and editor (educational material) and have reached the end of a project. I have something lined up that would probably see me through a good few months, not full time work though. I woild normally be contacting people now to line up enough work to keep me busy five days a week. But I guess I should hold off doing that.  Work would be a good distraction but I don't want to renage on deadlines or feel stressed about getting things done in time. any advice? Do you think you would have been able to / were able to do about two week's work every month, on average? This is from home so can be done any hours. 

I definitely could have done that as I have a week at least each fortnight where I keep very busy, am just tireder by evening than usual. I agree with you that it would be a good distraction. As you work from home infection risk is not a problem. Go for it! Xxx