We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

He's gone

Kfla8087
Posted by

My partner was diagnosed with stage 4 bowel cancer last Easter, and had an incredibly painful journey for a year before it and since. When chemotherapy was attempted last may, it had to be stopped because they hadnt treated the colitis that they had discovered, which then mutated into c.dif. so he had the pain from the cancer, then the c.dif and colitis and a 5 week stay in hospital happened. He came home but just over 24 hours later he went into septic shock and was in icu for 5 days. He was moved to another ward for 3 weeks so in total he ended up in for 8 weeks. During this time he was told they could look at doing a pelvic exenteration (modified) to basically remove the tumour and give him a bit more time. But this would have also 99% certainly taken his legs too because the tumour was pressing on his main blood supply to his legs. A lot to think about. He finally made the decision to do it so he could see our daughter more, but they said it was too risky and removed the option. Next thing they did, was radiotherapy which actually did help him with the pain. Fast forward to just before Christmas  and our daughter developed a fever which eventually passed to both him and I. I lost my hearing, and he lost his voice. (Terrible combination) he started saying that his neck was hurting, and one of the scans he had showed that his throat was compromised because there were some swollen lymph glands pressing on his vocal chords. His oncologist said it could be cancer related due to it following patterns. But also said it might not be. So he started a new combination of chemotherapy with the view to have radiotherapy on his neck to help with that pain. After 4 rounds, he had the scan to see what was happening and a week today ago he said that it wasnt doing anything beneficial and stopped any further sessions. The next plan was to have the planning for the radiotherapy today, and start it next Monday. He was looking forward to having that so that it would ease the pain, and potentially allow him hos voice back one day. It would also have hopefully taken the pressure away from his swallowing difficulties and enable him to drink water like he was craving, and eat more foods. He had lost interest in food, nothing tasted right, and the only thing he could manage was milk. He drank it constantly, either plain or in a milkshake. Wednesday night he had a bad night where he couldnt breathe properly and was struggling to wake up thursday morning ( he was staying at his mums but trust me thsts a fucking bone of contention with me as it is ) so his gp came out to see him. He said it was terminal decline, and requested the medications for that asap. We thought it would be a good few days at least, but the drop in his oxygen levels, and his consciousness was much less was starting to panic me as I just knew. He was very slightly turning blue. Blue lips, fingertips and I saw his veins were prominently blue too. We were so worried, we got his dad and brother round just incase, and he actually woke up and came downstairs that evening. Came and had a drink of milk, watched some tv, sat with us and joked about things. You could see he was in pain but at this point he was so used to it nothing really helped. His mum insisted that he have all his evening meds together, and his sleeping tablets, so by 10.20pm he had had them all. One of the immunotherapies panatumamub causes spots among other things so I asked if he wanted to me to do his face. I gently wiped it with tea tree wipes first to clean it all, then I sat him inbetween my legs and massaged diprobase on his back, his neck, his collarbone, and lastly his face. Every time I do this it sends him to sleep and he truly relaxes. I was happy for him to stay right there and so was he but of course mummy dearest wanted him to get in bed, so forced him up the stairs and into bed. Weirdly he always stayed in her bed and she staying in the spare room. We got him kn, and j was hoping for some time alone with him as I wanted to see when he was coming home, but she wouldn't leave. And insisted that I don't touch him, or talk to him otherwise he wouldn't go to sleep. Hes a 40 year old man for christ sake, and I've been with him a decade. How can I change my habits now? If I didn't touch him or murmur to him, it would have been very strange for him. He eventually dropped off but had that horrible rattly breathing because he had something in his throat that he just couldn't shift (coughing caused him pain and his stoma to prolapse even further). I stayed with him, watched over him, rearranged him if he moved. He sat up twice, and then started to get agitated. He didn't respond to any attempt to wake him so j thought best thing is to get him some oxygen. Called 111 but they were too busy to even answer, and ended up having to call 999. They came in and gave him oxygen which brought it back up from about 38 to 85. They said he wouldn't really make it. He had long refused to go back to hospital in any way so anything that happened had to be at home. So, out  of hours doctor came and gave him something to ease the agitation, and we were to get the district nurses and those meds previously prescribed asap. I thought right there and then he would die in my arms. I was not ready. His dad and brother came back at 4am, and both stayed and we took turns keeping him supported when he wanted to be sat up, I took him to the toilet when he wanted to go, he gave me kisses, I gave him a strawberry ice lolly to moisten his mouth. I also had to go out twice to get meds, and the second time I made it back, called the district nurses to finally administer everything. And his friend shouted down to come up. I just just barely made it. Half 5. My world ended, and the emptiness has now just taken over. I cry, I sob, but mostly I just feel like I'm empty and devoid of any feelings. I function. Is this the shock? Is it denial? Is it self preservation?  I dont know. I had to tell our daughter last night, and she hadn't seen him since tuesday night. Shes gutted. I'm lucky though, because she has chosen to hide at my sisters with all her cousins, and that's absolutely what she needs right now. I can focus on doing all the practical things that need doing. It is my right, me, mine to do it all for him and although they will be very involved, his family dont get the final say. They interfered far too much all the time and it annoyed him. Hes my babe, and he has been stolen from me far too soon and not just physically, but emotionally. I have to raise our 7 year old without him, I have to watch her grow up knowing he desperately wanted to be there the whole way. I have to make room for her pain as well as mine. They don't. So maybe this is why I can still see clearly? I refuse to let someone else do all the necessary things, it's not right. I should be doing it, so I have asked his brother to support me to make sure I go in the right direction. He is very good at that and I know it was what my babe wanted. I've not spoken like this in depth yet as it's only been 3 days, but I knew that even if nobody replies, there will be more people who may understand my mixture of feelings and how sometimes I feel things that arent fair and I'm being selfish but cant talk to anyone about it incase I hurt their feelings. I didn't sleep much last night but I was ok. I'm in high alert I guess. Probably best j stay up high enough that he gets all the love he deserves, and I dont let him down. 

LoobyLou49
Posted by

Hi I am so sorry for your loss. I'm sure you will have seen the many posts where our members feel that they are being selfish. Of course, you're not, you're hurting and in what sounds like an often difficult situation. It's very early days, be kind to yourself. I hope things go as smoothly as possible.

Sending much love,

LoobyLou
If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. 

Click here to see how to add details to your profile. It helps everyone to see a little about you

BootsyD
Posted by

I'm so sorry for you and your dauggters loss. I hope your brother in law will be able to help you in the next steps you have to take. It won't be easy if his mam wants to kind of do what she will feel is part of her duty but after everyones initial shock you will all cope and compromise.  

(((Hugs)))

Tomorrow is another day
Kfla8087
Posted by

Thank you. I need it to go a day at a time, and I have a bit more strength to stand where I should and be who he needs. Registering him at 2.30 this afternoon. I'm empty right now but feel that it's going to be horrifying but I need to do it. It's only fair I continue to be who I always was for him. The one who does the paperwork, the one who reassures him that I've got it all sorted and under control. My babe will be taken care of the best that he should be. I just hope that this covid nightmare doesn't ruin it too much for him.

Needing friends
Posted by

Hi there, I felt, feel  just like you do. Go with what your heart and head tell you. He is yours and that won't ever change. Life is never straightforward, but you are doing everything you can and more. You won't ever let him down xx 

Love is eternal
Kfla8087
Posted by

This is about as un-straightforward as is can get right now. Last night i had to pack a bag and bring my cat down to my sisters where my daughter is as they have put us on lockdown. This means that not only will I be further away from him geographically, but planning his funeral is going to be so tricky. All through whatsapp calls and relying on someone else to do it all. I cant handle that. I know I cant control it all but it is the only way I am managing. Doing what needs to be done, getting it all in the right order. Now I cant do it. Logically I know that being with our daughter is the right thing, and that's what he would want. It's just very hard not having him with me to get us through this pandemic.

Sarah2nd
Posted by

Hi Kfla8087

I am a member of the bereaved spouses group but was in the Carers one previously & your post just stood out today. 
I am so very sorry to hear your sad news. It is very familiar & at the moment you may not feel anything properly, it is very much an inbuilt protection mechanism- our brain tries to  keep us safe by simply not processing it fully. It can feel surreal. You will in time I promise, sometimes it’s tears sometimes anger or sadness but those emotions will surface. 

Although you may have preferred the last few hours to have gone differently & without your in-laws involvement,  believe me you may In time still feel comforted that you managed to keep him out of hospital as he wanted. It will help his family to also feel they did their bit (not your problem I know but it will) . That is no mean feat but you did it anyway. You kept things as normal as you could for him, gave him courage to keep going & despite it being a near call you WERE there when he needed you at the end. Well done you, that really is love. you couldn’t do any more.

Im so sorry for your child too - I have 3 children as well, my youngest had just turned 11 when my husband died & it has been a rollercoaster for them since, we aren’t quite 2 years down the line yet, you probably can’t imagine that but time moves on regardless of how we feel.  You can only take it one day at a time & don’t look too far ahead. Children are funny things , they suddenly want to talk about dad or find a jumper he wore or a photo from a happier time & it can take your breath away because they are so natural about things - they are either crying & upset or they are getting on with things. However they feel, it’s ok. 

I can see you’ve joined our group too & although I’m sorry to see you join us I think you will get a lot of love &support there  as well. People get it, I mean really get it and they care. 

For now be kind to yourself, eat & sleep when you can. Take it one step at a time, the way will become clear 

big hugs to you & courage for the days ahead 

Sarah xx

elephant222
Posted by

I am sorry for you loss x

Sara_729
Posted by

I cannot imagine what you are going through... but you sound incredibly strong. Sending you love, peace and strength, to you and your daughter, during this incredibly challenging time