Updates on Jay

So Jay got up this morning saying he felt really tired. Tired as in `sleepy tired` I said that it is probably sleep deprivation catching up with him as when he was in hospital, he said he could not sleep at night and was awake sometimes at 2/3a.m.  in the morning some nights watching the wee hospital TV they provide. One of the nurses even commented on it and he said it was the `noise` from the other patients she offered him a sleeping tablet but didn't want to go down that route. He was in a shared room with 3 other patients and a couple were being a bit `difficult` the one across from him he said kept shouting for stuff all through the night and cursing and swearing at the nurses and the one in the bed next to him was brought in refusing to eat and kept coughing and spewing most of the night and then he said he actually just got to sleep one night then woke up to find the other patient diagnonally to his right sitting on his armchair at the bottom of his bed. Jay has been fine this week since getting home he has been eating well which is good to see because his appetite before he went in was practically zero. I don't know if its all the things he needs to try to get used to now with having to navigate catheter bags etc  as well as his stoma. He was up for venturing back out today but because he feels so tired, don't think it's going to happen, so we'll try for tomorrow again I think. Psychologically its all getting to him which is understandable. At the moment it's like `groundhog day` where each day is just morphing into one. I just want to see him back on his feet again and hopefully we'll get there. 

He will be very relieved to be safely home and getting looked after .

You never know a small trip out might do him the world of good tomorrow. There is something nice about the normality of a trip out .

Take care ,

Court

Thanks Court!  Yes, he seems a bit better now. He said he felt better for his `extended nap` today. He went back to bed about 11 this morning and then woke up again about 2 o'clock this afternoon. He woke up hungry so made him a quick bite to eat then he got up. Had his dinner tonight too and then an individual trifle (these seem to be a favourite just now thanks to the hospital) but just so good to see him eating again. He's cut down his portions drastically though I think this is through the hospital too I think they just give them enough. The platefuls he takes now a couple of years ago he would say were not enough and he had to have his plate `stacked`. I don't really care as long as he's taking enough to eat that's fine by me. He says he's on the dinner tomorrow want to make `spagbol` that has always been one of his specialities. Think we will get that wee trip out tomorrow.

Well got our wee trip out today. I got a new watch Jay wanted to get me for Christmas but with everything that was going on then he couldn't get out to get it. Went out in the car and I went in and collected it. Did a little bit of shopping and got something to eat. Came home and he made dinner for tonight. Good to see him do that again that's when he's at his happiest. Got an appointment letter for the oncologist on February 9th (3 days before Jay's birthday  just hope it will be one we can celebrate) now the worrying begins will they be able to do anything else for him with regards to treatment I wonder.

Well, how wonderful that he was thinking about you, & bought you a new watch! It all sounds excellent news as to how he is feeling right now! Think on those positives. Far too early to worry about any future negatives!

Best of

Marianne

Thank you, Marianne!  Yes always try to be as positive as possible. But for every one of those, there is always that wee niggling negative just waiting to bring you back down with a thump. He's a lot better today in saying that yesterday was not so good as I posted but maybe this will be the way of things. Who knows? Maybe I will just have to try accept that everything is not going to be as it was. I was just thinking of that today all the things we would be looking forward to at this time of the year what plans we would have for the year ahead etc. Can't even think about that now just have to take things a day at a time and that's what makes me very sad.

Vicky x

To be honest PattyK  I think you might need to adjust your expectations a bit . I think he did incredibly well going out , making tea , adjusting to his bags etc when he has only been out of hospital a week . What I do notice with mum if she has had a busy day prepare for a bit more fatigue the next day . I don’t think we can fully understand the fatigue that comes with treatment and hospital stays . It would take more than a week for that to level out in my limited experience.

We made mum’s meals for weeks . But no two situations are the same .

You might like to talk to his team about what is a realistic expectation on his performance levels for activities of daily living . They might think he needs some carers etc .

Its so hard to tell from the internet . My rule of thumb knowing my mum is to follow her lead . If she is struggling I regard that as an indicator to up my input that day . If she is coping that day I pull back .

He has a lot to process both physically and mentally and that is all draining .

Just my take and how I slowly introduce building mum up again . Only now am I seeing some good results . She came out of hospital in October ! But the gains are much more obvious now .

What is also important is to know when you have reached your limit and to get a bit of help in . We thought about that a lot .

I know nothing about stoma bags but mum changed her bags mainly in the bathroom . 
take care ,

Court 

Thank you Court! I really don't think he is ready for carers just yet for the fact that he is still `mobile` and can get up and about. Yes it was good to get out yesterday for a little while. He did open up again today that he is totally fed up with poo coming out one side of him draining pee from his leg and on the other side and getting `gunk` coming from his backside at night. He said he may as well just not be here altogether and that would suit everyone. I know it is draining him physically and mentally. It's just so sad to see how he has become as although he has never been such a `social bunny` he was always one to be wanting to go out somewhere even if was just for a coffee in a motorway service station which believe or not was something we used to do years ago if we were bored or a trip down the motorway to Blackpool and back again or something- yes seriously!!  Takes him all his time to get himself together these days. Four years ago this July he retired and for most of that retirement it's been in and out of hospitals a diabetes and cancer diagnosis and when he worked 24/7 he was never in a doctors surgery or hospital and the only time he was in a hospital would be to visit someone. Maybe the working 24/7 became his `downfall` though just because he couldn't say `no` to his boss at the time or scared if he did he's lose his job but in the end it seems his boss was the only one to benefit from his 24/7. So cruel.

TBH, I think that we all need to live one day at a time. It's not realistic to make plans for the future - whether a cancer sufferer or otherwise. Why look forward to an unknown future, when you can enjoy the day you wake up to. This morning, I woke thinking about Croissants, with lots of butter & Apricot Jam - & that's what I had for lunch, & it made me feel good.

Could be worse I suppose. Our next-door neighbours the chap John had what we think was a mini stroke this time last year so him and Jay were both going through treatment at the same time. The only thing with him though is that he has had to give up driving whatever was happened to him has done something to his memory he can't remember simple words and things that happened like a split second ago and his concentration has gone he has some kind of `brainfog` but it's not due to covid his wife said. It also affected his right arm and he couldn't move it for a long time but its ok now I think and his right leg he still drags it a bit. They like us had to get railings put up outside their front door and as they have the ground floor flat got a patio door fitted to the rear of the house as John wasn't able to lift his foot over the slight lip at their front door and they managed to get the patio door running level with the floor so at least he can get outside but seems he rarely goes out too and they had to sell their car and one of my other neighbours he is quite elderly and he had to put his wife into a care home she too took a stroke and like us they are an upstairs flat and it affected her mobility and speech completely so they couldn't get her upstairs at all. She was a fit wee woman as well used to see her going out every day to play badminton somewhere or she would be somewhere else. So it sort of puts things into perspective when I see that that at least I still have Jay with me and for now, if he wants he can still get out and about.