Can’t sleep and feel overwhelmed

Hello Jd37

Welcome to the forum though it is somewhere most of us don't want to be but here we are. When I read your post I could relate to it slightly. I am 3 years in now from losing my husband Jay to bowel cancer and like your John he fought it for almost 2 and half years at one time going into remission only for it to return 5 months after his operation to remove his tumour in 2022. He was so elated that they said they had got all his tumour and it was then just a case of recovery for him but fast forward as I said 5 months and blood tests had shown his CEA markers had risen and a further CT scan confirmed it was back. After that it was just a downward spiral for him both mentally and physically. He just gave up when they told him it was back. Further chemotherapy damaged his kidneys and he needed drains inserted into his back to help his kidneys drain properly so the chemo was stopped and after that they said there was nothing else they could look at and so he became terminal. Four bouts of sepsis developed after that and it was the fourth along with the cancer that finally took him in June 2023. He was a `big bear` of a man and it was so upsetting to see what he became at the end just a shadow of his former self. It is still very early days for you and your head will still be all over the place with feelings of shock, denial, guilt etc. I was very much in denial at the end for every good day Jay had I saw it as he was getting better but then the next day he would maybe be back to square one. I didn't want to believe `the end` was coming though I did know it was. I get the sleeping thing as well. At the beginning I was a bit of a night owl as well some nights not going to bed until 1 or 2a.m in the morning and sleeping in until maybe 10 in the morning or whatever. I have managed a little routine since and usually go to bed at night just before 12. Still have days when I wonder what I am getting up for but I have a little dog who needs to be walked and fed so he needs me he was Jay's Christmas present from me and our son 13 years ago. I look after my older sister who lives within walking distance from me in sheltered acommodation. She has learning difficulties but is independent to an extent she can go out on her own but needs me to help with bills and shopping etc. She has ironically fought cancer- twice! first time seven years ago when she got breast cancer they got that in its very early stages and was successfully treated then two months after Jay passed she was diagnosed with bowel cancer and again it was in its early stages and got treated successfully. At present she is awaiting heart surgery she has a leaking heart valve which was picked up at one of her outpatient cancer scans. I have my son and his wife who live not far from me either and I have two beautiful little granddaughters. The youngest is 9 months old and the older one will be 6 years old next month (September) she just started P2 this week at school. Where are you in Scotland I'm in Glasgow. Just keep coming here when you need to we're all a good bunch and good support for one another. Its a safe place to come if you need to vent your anger and let off steam when you feel nobody `gets it` because we all do. Take Care of yourself and sending you best wishes.

Vicky x

Vicky, thanks for your reply - I think you may have replied to another post of mine, maybe on another forum. Your story is familiar to me. I am in Glasgow too, in the north of the city. 
I was just thinking there about one of the reasons I was sad is that we never really talked too much or acknowledged that he was going to die. We did on occasion and I promised that I would reinvent myself, find new hobbies and passions, get fit and healthy. But we didn’t have many conversations about the after part - I always said I would deal with it when I had to and didn’t want to give it head room when he was still here. We don’t have enough video of him or enough recording of his voice. We have loads of photos but I wish we had so much more of his voice. It all seemed to happen so quickly in the end. Until February we were on the first on the list in Scotland for a curative liver transplant and then we found out it was in his bones so no transplant. Then he had six weeks of lonsurf that wiped the floor with him and he was in hospital twice in March because his liver had started to fail. He had had a year and a half of chemo every two weeks before lonsurf and had never been sick or had diarrhoea so Lonsurf really knocked him out. And it didn’t work! He circled back to folfox for three rounds. It had worked brilliantly June to December 2024 but again it didn’t work. He was on steroids from late March to support the liver but they destroyed every bit of muscle in his body very quickly and he was pretty much bed bound for the last 10 days. He didn’t want any photos or videos of him in those last few months. 
I retired last June but am now only 57 so need to find things to do with my time. Our children are all still at home, one is through university and works, one is at university and one is just starting S6. Very soon the days will be quieter and although the house is often busy with friends and family there are still many quiet times and his absence is always felt by us. 
Anyway, feeling very emotional again today having cried so much last night but it will pass. I have family over later this afternoon and two of the children are about today. I am being forced to slow down having fallen last week and broken my elbow!! 

Hi!

Yes I think I remember you being here before sorry if I babbled everything all over again. I don't have any videos of Jay either just photographs. Just so much has happened since he passed that he hasn't seen. Our son get married, our oldest granddaughter start school last year and the birth of our 2nd granddaughter last October- can't believe that's almost a year!! me going back to driving again which he wanted me to do before he passed so I could have my independence I couldn't drive for a long time because of an illness I have which caused blackouts but tests have been a bit inconclusive on that and I went back to the GP and she ok'd it for me to drive again only with the caveat that if I feel in anyway dizzy or lightheaded just to use common sense and don't get behind the wheel. I've not had a blackout in a long time I had epilepsy growing up but it left me in my late teens early twenties and I'm 63 now. So they thought the blackouts were the epilepsy coming back and I had to stop driving but as I said tests showed it wasn't epilepsy. I'm looking after- or trying to- Jay's pride and joy that was his car which we bought just before he became ill and eventually was unable to drive I sometimes wonder what he would have made of my driving now but i'm getting better at it through time slowly building confidence again. Little things like this you miss. Take Care.

Vicky x

Well done you, going back to driving must have taken great strength and courage but it is a fabulous skill to have. It opens the world to you, especially when you have so many people to visit!

I did promise John before he died that I would reinvent myself and live and encourage the children to go and live their lives as freely as they would have done if he had been here. They know how much John and I loved each other and I can hear their concern for me and how I am coping. As a result I need to do more than put a good face on it. Of course we can grieve and it is early days but life goes on and nothing stands still for long. I will be ok and so will they.

Anyway, I am rambling again, I think I actually need to journal!

Goodnight and here’s to a better night sleep tonight!

Well, it's utterly shit. And you are right to feel overwhelmed.

I haven't got any answers - none of us here do - but please try to take some heart from the fact that you are not alone: we hear your pain, and we feel it.

There are no glib answers: it's rubbish. But please just keep putting one foot in front of the other.

I send you my love and best wishes.