Prednislone weaning

Cancer is a tough ride, everyones cancer is different, there are always hiccups on the way when the NHS is trying to keep folk alive for as long as possible. Your husband is lucky to be treated at the Marsden, its one of the best there is! All treatments are trial and error until they find something that works, sadly it doesn't always. For cancer patients and carers as you can see is a rollercoster that you cannot get off!  Like many of us you are going through a stressful time. Best to ask the nurses about weaning off, or ask your husbands nurse at the Marsden. I think many of us just exist until hopefully if not curable, but our treatable cancer is under some kind of control, shrinkage of tumours and stable, this can take longer than 10 months. Sorry but we all get fed up, we can all get angry when things go wrong, but sadly this is a journey we on here are all on, we have no choice but to get on with it, and God willing after treatment, we can all go on holiday! None of us are special, we just have to play the hand dealt to us. Why not get help and talk it out with someone on the macmillian help line. Sadly the carers often get looked over on this journey, and it's the carers doing all the running around, the mental affect it has, let alone the tiredness, takes its toll. Try not to get so worked up, take a deep breath, this is a long road you are on,  it won't go any quicker how ever much you try to speed things along, you will make you self ill. Do you have a Maggies near you or at the hospital? I hear this group is great support and perhaps can offer help, advice and support which I think you could really do with. All I can offer is an online ((((HUGS))) xxxx I think you could do with one!

Hi thanks for reply. I just feel so sorry for him, as hes feeling so well & oncologist rushing us for bloods to see if  treatment could be done, didnt make sense, as she was aware ofc"weaning" but didnt seem an issue.

So now worried this weaning is going to make him ill, no chemo & no start date, he thinks its going to spread & I'm trying to be positive for him, when I dont have a clue whats going on & what weaning side affects are, I didnt even know there was any.

I havent slept tonight, I do have GP support meds to help me sleep, but do zero. I just get to a point I just collapse bed & have a 2 hr ( if I'm lucky) sleep.

Hes actually ok at minute cooing eating going shop etc whats taxing my brain is collating Marsden appointments which are clashing & after several phone calls yesterday, managed to sort it. The radiotherapy doctor apologised & said it wasnt my job to do this & admin should.

Just cannot see any light at the end of this long tunnel & it really is not living, just existing around appointments that either clash or oncology have no idea what appointments are for. All was working out smoothly, I knew what I was doing, then  this blasted delay keytruda ( stopped in August) colitis flare up literally came out the blue no warning.

So I honestly dont see how anything can be planned, not even his flu jab! But any human being needs a break to recharge, I tried & failed & hes had zero, 4 walls tv & shop & the odd lunch out.

I'd just like to know what I'm facing with weaning, also his endocrinologist wants an update as he prescribes all his meds as pituarity gland doesnt work ( not cancer related) you would think doctors keep in touch, but I'm the go between there as well.

My husbands now convinced any travels off the cards & he wont be here at xmas & yes I have informed the Marsden of hus mental health, but I'm just banging my weary head against a wall.

He as actually said is all this worth it, as he doesnt seem to be getting anywhere & just stop the whole thing & let nature its course. Which again I can see his point of view, but obviously talked him round.

Its just all taking its toll & I wish there was 2 of me....

Hi Tillyboo  I’m sorry that chemo is currently on hold. With your husband’s recent colitis I am not surprised. I think the blood test would have been necessary before seeing the oncologist, whether chemo was going ahead or not. Can you imagine if they hadn’t checked his bloods and he had low sodium or an infection etc. 

It is horrible being on this journey, but what is the alternative? My mum was a patient at the Marsden for her ovarian cancer, and we live a 4 hours drive away, and they would give mum a 9am appointment. Which meant we had to leave the house at 5am, and with the long appointments we were not getting home before 8pm. It was frustrating, and seeing mum so exhausted from the long days and treatment was hard. Cancer is horrible, it is a living nightmare, and not a life anyone wants, but for me going through all of the rubbish is better than the alternative. 

I think you are looking at the bigger picture, and that is why you are not coping. You need to break it down to a daily basis. What needs to happen today, can you go out, can you have a nice meal, tick those little boxes and let tomorrow be another day, don’t worry about things that may not happen. It is the only way I cope. 

Sorry about your Mum. We're lucky that Sutton Marsdens 10 mins away. On 27th Oct we have to to Fulham Marsden for a procedure, as Suttons busy & I am absolutely dreading going there, as thats where my sister passed away, so I honestly dont know how I'll face that, I still dream about that now.

I think I'm so tired at the minute, my thought process is up the wall & was compiling this weaning spreadsheet until 9pm last night, normally a 10 min job took me hours, I just couldnt focus or take in information. I'm literally on the bones of my bum & it doesnt getting 20 plus appointments from Marsden that nobody knows anything about & spend over an hour trying to find out whats going on no one knows & passed from person to person & eventually admin error comes up or proposed booking in one department, that will take place in another. Confusion is awful & I've explained how confused I am trying to sort these appointments with transport when I dont know what they're for or what clinic.

At present my mind is a ball of total confusion.

So it is what it is, I didnt sleep last night nor husband purely through stress of treatment paused & not a chance of any form of travel for the forciable. Its just a daily living hell....I feel sorry for him that I cant do more & fed up with myself feeling so tired & useless...