Hi all, thank you for accepting me. My husband has been diagnosed with stage 4 bowel cancer. At present I am not accepting it, it makes me feel sick, panicky, shaky etc. it was a complete shock. Anybody else in the same situation. Many thanks
Went in to the hospital this afternoon he is looking a lot brighter. The physio's came in and got him up and they were quite surprised that he could actually walk with his zimmer. He just walked to the door of his room then over to the window and back again with the physios at his back they wanted to see how I got him up out of bed I only need to pull on his arm slightly then he gets up and does the rest. They are going to try him with stairs tomorrow. He is though determined that he is going to do this, so he still has a lot of fight still in him. The chair thing he says is all psychological he thinks. Because he had a bad experience with a couple of the nurses a couple of weeks ago it's still in his head that if he sits in a chair his discomfort is going to come back. Then a little while later a nurse came in to ask how many stairs we have leading up to our front door and how many stairs inside the house leading up to the flat itself. She said this is to pre-book the ambulance home as they think he will be ready to go this Friday. They are not promising anything and it will be palliative care who have the last say. She said this morning she still sees him being in there at the weekend and it may possibly be next week sometime before he's home so it's still a bit in limbo there just now and won't actually know until Friday until he gets home. The palliative care nurse said if he can't do stairs he may need to be confined to one room in the house so that would mean he couldn't get out at all and neither he or I want that!! so this I think is spurring him on to be able to tackle the stairs. Maggie we already have a doctors letter in with one of the housing associations we are listed with. We qualify for what they call `livingwell` housing it is for people aged 55 and over which we fall into. The areas they are offering though are miles away and I need to be local for my sister as she has learning difficulties too and is very reliant on me. They do these types of properties in our area but unfortunately, there are none available. There are people who get these houses who have nothing wrong with them and able bodied and that makes me angry. I have constantly been on to the association I am listed with where my sister is also but they have nothing either and although I have told them what is going on it's all down to a waiting list but then again sometimes `it's who you know` `not what you know` that can get you where you want.
Maggie (Distraught) has just asked me that. I already have a GP letter in with the housing association we are listed with and have given loads of info Hospital letters, specialist letters etc- everything but blood samples to no avail. But it makes my blood boil as I said that there are ones out there who can get houses through `who they know` and not `what they know` and get houses where they want. I need to be in my local area for my sister's sake as she has learning and mental difficulties and is reliant on me for a lot of things. We are on the list where she is for a property too as it's sheltered/assisted living but again, those who are there don't want to move as it's such a popular well run complex. My sister was just lucky when she got her house that one was available at the time I applied for her but again there is a loophole there somewhere that says anyone over the age of 16 can apply by anyone they mean able bodied individuals although the residents are mainly elderly or disabled but seemingly there is nothing that says if Joe Bloggs and his missus wants a house next to the in-laws they can apply for it so you go on the list. and you just have to wait. I am even willing to pay rent because our house is ours so they would know we would have funds to pay rent through selling this and wouldn't get help with that. So unfair. On hindsight now I wish we put our names down for one of the properties where my sister is when we talked about it a few years go. We always said we wouldn't mind a wee house there but never ever thought it would come to actually needing to do it. We are only within walking distance from my sister. Just need to hope that maybe a few on this list will drop out and not re-apply but doubt it.
Dear Patty I feel so sad for you. You should be at the top of the list for anything that comes up. Have you applied for PIP as your hubby will get it and it is nothing to be sniffed at. This is north right for you and him. I really feel for you. Just keep ringing and pestering them every day and hopefully you may get somewhere. My heart bleeds for you. As always thoughts and love Maggie xx
Much appreciated. Jay gets attendance allowance and I get carers allowance for him. He gets his state pension too don't think he would get PIP there are some benefits you get that can stop you getting others. Some benefits are now devolved in Scotland too which can differ from England. I can't get carers allowance for my sister because she gets pension credit along with her pension. If I applied for carers allowance for her she would need to give up her pension credit and I don't get my state pension for another seven years when I'm 67 don't know why they upped the pension age they should just have left it at 60 for women and 65 for men. There is a new Adult Disability benefit in Scotland come into force too but again because Jay gets Attendance Allowance he can't get that. So one benefit cancels out another so to speak. He's not long off the phone and his nurse pal Paul or Pat I think his name is- he's on first name terms with all the nurses now- said that the physios were really impressed with him today in how he managed to walk that short distance with him so maybe it's getting nearer for him to get home.
Vicky, Les applied for PIP but does not get his state pension for another one and a half years. I am older than him and we were the first born in 1954 just missed out on my pension. I got it at 66 and then they thought I had a stroke when at work in the hospital in the October. It turned out to be vestibular it was awful. Then covid and when everyone had to be vaccinated I had to leave, great. Not because I was against it, my lungs collapsed with the polio and in 1986 I had the rubella jab and was poorly for 6 months so I declined the covid vaccination. I react very badly. I do work from home for a private psychiatrist who I have worked with for over 20 years. That is enough of me. Les finished his 3rd course of chemo and is extremely tired for the week off. He has been asleep most of the day and has gone to bed now. I get really anxious and more so when he is like this. The oncologist rang and said it was all normal. I hate seeing him like it. He is using braces as he has lost a lot of weight. He won’t let me buy smaller trousers. Keep us all updated and take care of yourself and that applies to everyone. PS son in law cut the grass. As always heartfelt hugs Maggie xx
It’s terrible you have enough on your plate without worrying about housing. I agree think it’s who you know!’ Sounds like your husband is thinking more positively and this may spur him on, fingers crossed. Can’t think of anything worse than being stuck in one room. Keep your chin up
You will feel a bit happier getting grass cut-I have been doing daughters today and a bit of weeding. A lot of cards came today and more flowers so that set me off. Will have to go to Paul’s and cut his grass next as he can’t do anything as he is so tired. He has had an infusion this week so fingers crossed it will help. He is nt coming to registrars tomorrow as he is too upset.
kevins pension and stuff will all be cancelled so will see what I am left with to manage on. Seems like it’s a one stop at registrars as they cancel everything - will see
Really pleased you got out. I can’t cut the grass as it is too much and far to big. It is a petrol lawn mower and it rind away with and has thing you pull which I can’t do to start it. Weeding I wish I coukd send you some pics the state of it. Les loves it looking wild and unkempt but it makes me anxious and I would not know a weed from a flower. Off to bed so huge hugs to everyone xx
Oh Maggie! I'm the same. Just can bear seeing Jay as he is he too has lost a lot of weight and I'm just so used to seeing him as a `chunky monkey`. I used to despair about him being so `big` (obese) and yes, this has probably contributed to his troubles in the long run, but there's losing weight then there's losing it like this which is definitely not recommended. The ironic thing is he was working on his weight loss because of his diabetes before the cancer surfaced. He wears jogging bottoms with the tiers he has always worn either jogging bottoms or elasticated waist trousers because of his size these trousers just hang on him now or fall off it was 50 size waists I had to get him now he's down to about a 42 or 44 I think and his T Shirts at one time I was buying 4-5XL sizes now its down to 2-3XL and the ones he has just now just hang on him too whereas before he would be bulging out them. Palliative have said there is no way he may be able to build his muscle back up again either (thanks Morticia!) as it seems anything you eat with cancer just saps up the proteins in the foods etc. So it's anything and everything that gets eaten and no food is a sin. He's been eating well mind since he went into hospital and just hope he can keep it up when he gets home. He has a sort of `celebrity status` this evening he phoned again to say all the nurses that have been coming in to see him tonight are all talking about how well he did today with the physios and his walking so maybe something good to come out of that. So what started as a bit of a `crappy` day for me has ended in a sort of positive note.
