Diary of a lymphomaniac

[likeitorlumpit]

Cheers fellas

Out and about alcohol free is an experience that I'm enjoying a lot as everyone else gets more and more drunk I find I'm feeling more and more intelligent.

Steroids though- I've enjoyed the buzz but this morning noticed I'd put on a stone in the past 7 weeks- that's got to stop.

[Pedroski]

Cheers fellas

Out and about alcohol free is an experience that I'm enjoying a lot as everyone else gets more and more drunk I find I'm feeling more and more intelligent.

Steroids though- I've enjoyed the buzz but this morning noticed I'd put on a stone in the past 7 weeks- that's got to stop.

 

Don't like to say it, but the steroids can be a nightmare after a few months. I was on very high dose (80mg/day) Prednisolone for half a year - docs trying to suppress my immune system - and the initial buzz of feeling great, not needing much sleep, feeling really aware etc, soon wore off as I realised it was having some effect I didn't like. You really need to keep an eye on appetite and make sure you don't eat more than usual. My weight went up by a couple of stone, but my face ballooned as well and I looked like it was about to explode! I also ended up with quite bad mood swings and weird vision.

 

Keep a close eye on things and just watch what you're eating

[Andy Collins]

Only a stone, ive put back on about 5.5stones:biggrin: never been a tubby in all my life, getting there now. Im sure my imminent return to full time work will take care of it though....maybe

Doesnt seem important to me now, but back in hospital on the chemical torture block, I had my immune system shut down, my thyroid went into hyper mode, my UC was chaotic, then I had meds to take over from the immune system, meds to counter the thyroid, meds to treat the UC, anti rejection drug that I was trialling as a guinea pig (Cyclosporin) something ominously yellow that looked as if it should belong in a Nuclear Physic lab, as well as pain relief in the form of Morphine, (didnt stay on that for long!!).

I honestly think the effect of the drugs and chemicals is far worse than the symptoms of the illness, at the time, although they do eventually help you to recover. (in my case enough to undergo the surgery)

Anyway, hope youre keeping upbeat, I cant imagine having to keep going back for further treatments, and e mental strength that must take.

Edited July 22, 2012 by Andy Collins

[likeitorlumpit]

Thats me off the steroids then- maybe I should check why they are giving me them first. But today I really notice how much weight I have been putting on and it's not good. With cancer they like you fat as they can give you more chemical as I understand it but I'd rather not.

5 and a half stone Andy- that scares me no end. I'm sure the exercise will help.

I'm going for an 8 mile walk- Walmer to St Margarets along the coast and back tonight just to let my legs know what to expect. I'll have to wait till then because you have to keep out of the sun- darn!

[Pedroski]

Thats me off the steroids then- maybe I should check why they are giving me them first. But today I really notice how much weight I have been putting on and it's not good. With cancer they like you fat as they can give you more chemical as I understand it but I'd rather not.

 

Have a chat with your consultant about the steroids. They are usually given as part of treatment as they help to improve the effectiveness of chemo, and once you're on a high dose you must definitely NOT come off them straight away. Definitely worth speaking to the doc about it and mentioning the weight gain. You might find that the steroids cause your periods stop as well

[Andy Collins]

Im not trying to put you off at all, you obviously need the treatment, I dropped down hill like a stone, the weight fell away. The swelling while on the steroids was phenomenal for me, but it was fluid retention basically. My nads were swollen like grapefruit, felt like they would explode!! No one had told me what side effects to expect, so everything was a shock. i have basically replaced the body mass I lost while undergoing treatment, probably in better shape now. Of course, we all react to meds in different ways, what happens to one wont necessarily follow for another. Plus my cocktail of meds would have been completely different to suit my problem.

[likeitorlumpit]

back from the walk- I guess I need to ask

Fluid retention makes sense as I'm drinking at least 3 litres water a day but not eating excessively plus alcohol consumption nearly zero- just a blow out on the last few days before chemo just for old times sake you realise:001_smile:

I'll have that chat- I really couldn't handle large weight gain.

Thanks for your replies.

[geoff]

Stick with the steroids if they want you to take them mate,it is mostly water retention,& drinking good clean water is a great help to your organs right now.

If you get a bit of weight on due to the meds,just relax in the knowledge that you can loose it again when the time is right.

I had a couple of years of the pred anti inflamatery steroids,( for a different ilness),& found myself at about 15 stone from my normal 13.5,I lost it quite fast once I could take some excercise,& back to normal weight in a matter of months.

[likeitorlumpit]

Well....

fantastic news today the consultant said I am in complete remission (they call it CR)

Couldn't have been better- it doesn't mean I'm cured- you have to wait for 5 years cancer free to say this in the UK. 3 years in America apparently.

Couldn't feel better although there are still some remnants of Bendamustine in me which is causing a few side effects.

This time last year I didn't think I'd see this Xmas so it's so good to be at this point. My message- good old NHS.

Thanks for all your support- it really meant a lot.

[SamTheOldGoat]

Absolutely brilliant news, congratulations! You're going to have the best Christmas EVER!