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
Hope you are all well! Think we should all have a `virtual group hug` to start with. Unusually I had not a bad nights sleep. Took me a while to drop off mind but I shut my eyes and opened them again and it was 6a.m. so I just lay there looking at the ceiling for a little while then decided to get up at 8.45.
Today is the start of my `new life` in a way and don't know what it will bring. Jay is just off the phone and said they have got him up and washed and will help him get dressed. He said he will hopefully be home just after lunchtime. He knew by my voice that I was very despondent. He calls me `Mrs Doom n Gloom` but I think you can hardly blame me.
He is more or less accepting it that the cancer is not going away but I'm in denial at the whole thing I know I am finding it hard to accept. He said they are not going to do anything for him in the hospital oncology wise but they will be coming to the house to do things for him maybe manage his symptoms but don't know they said `making him comfortable` so don't know what that means.
He is so upbeat about it I just wish I could have his resilience. I just have to try and knuckle down as they say and get on with it.
I with you on losing your `life partner` Torry. 50 years is a long time. Jay and I have been together almost 40- 36 of them married and the thought of being without him really scares me. We have just always been there for each other and been through so much. We have seen other family members go together my parents, his parents, his brother and his wife and aunts uncles etc but this is so different. I am just hoping he will still be here for many months.
Tested again for covid this morning a red line and very thin red line so I'm getting there. One more day I think and I'll be ok. Love to you all
Patty I will be thinking of you. He will be strong for you like my hubby. Inside we are crumbling but will find the strength from them to carry on. Hopefully tomorrow you will be negative for covid. All you can do is spend precious time with him and possibly get carers in to allow you to have time for yourself as you will need it and you have to look after yourself. I feel your tears as with torry but I can only send you virtual hugs at the moment. We love them do much. All my love and hugs. Maggie xx
So, He's not getting home today now. Been trying to phone him to speak to him but for some reason he's not picking up his phone. Phoned the ward desk and they said it's something to do with palliative care they want to see him before he goes home so he has to wait for them to come and see him and they don't have a time for that. His nurse said he can't phone out with his phone but she has checked it and said he is getting a reception so don't know what it going on. Can things get any worse.
It’s so upsetting when they are coming home not coming home and it makes you very anxious. In one way you want them home and another you want them safe and looked after it’s really hard. Hopefully you test will be negative tomorrow and after having a decent sleep will feel a bit better. 40 years is a long time to be with someone these days and hard to imagine life with them. Daughter has just turned up and announced she is off work for two weeks to help out - what a relief!! Sun is out and so is washing so chin up and hugs to everyone xx
I've just been on the phone to Jay. Palliative care were in to see him so he phoned and put me on speaker phone. Feel slightly better after speaking with them. They want Jay to stay in because he has this stomach pain and they want to resolve it which I'm quite happy about. Because of his kidney problems, they are a bit reluctant to give him tablets or intravenous fluids so they are talking about patches. He was taking tablets but seemingly he was a bit `spaced out` after taking them so they are wary of this with his kidneys. These patches are similar to the nicotine patches they have in that you stick them on your arm I take it and they release the drug into the system slowly so they think that would be a bit more safer for him to try so they want to do a trial run of these before they let him home to see if they work. They said that maybe further down the line as well if he is well enough, they might just be able to re-introduce treatment for the cancer if they think it is stable and in a position they can do something but that is something we would need to take up with the oncology team so it may still be a possibility. `Every cloud` as they say. Take Care all.
Patty that sounds better. It does make me annoyed not knowing whether he is going home or not. That is a much better plan and now you must take care of yourself to ensure you are on tiptop form ready for him getting home. I am relieved they are trying something. Have a nice cuppa and try and relax. As always in my thoughts. Maggie x
Had a wee nap this afternoon my head was spinning. Had a specialist from the oncology department into see Jay so that was another call on speakerphone. She saw from the oncologist notes that I had contacted them about possibilities od having either immunotherapy or targeted therapy- so they do listen from time to time. She said to Jay and I because his immune system is so weak, any type of cancer treatment is off the cards for now. She said it seems to be more his kidneys they are worried about and this is what is holding him back. They are functioning normally just now and stable so they are weary about starting anything like that incase it sets him right back again because he has made such a marvellous recovery from the sepsis. Makes sense I suppose. What she did say though, was that she would go back to the oncologist herself and discuss things with her and will get back to us on what she said. It may be sometime before they can actually consider anything given the amount of hospital admissions Jay has had over the last couple of months. But it's a case of they are not saying yes, and not saying no it's a big maybe just now. Will depend on how well he is when he is home and the after effects again from sepsis which can take a few months to clear. The priority just now though is getting his stomach pain sorted and working on getting him mobile again. I'm just grateful that they are at least trying to get things done.
Dear Vicky that sound sensible and all you have to do now is build him up in order to get him right for any treatment they may give him. You don’t have the responsibility now as it is the hospital who is responsible. He has got through sepsis now and you can see him soon when negative from covid. I hope you are looking after yourself as you need to. At least they have taken notice and if you are still not happy make them listen to you. I hope you are negative tomorrow so you can see him. As always in my thoughts. Love and hugs from Maggie xx
