Changes in your relationship with a partner diagnosed with cancer

Hi thanks so much for your kind reply. It is reassuring that carers on here get exactly how you are feeling. You describe it so eloquently re it being an exhausting, draining and heartbreaking time. Some days are better but as you all know there are times when you feel so completely broken and in despair. I will take your advice and walk the dog more. Sending love and strength back.

Hi Detty, so very sorry to hear this news.Thank you for your honesty. Sending you love and strength to you as you continue your journey.

Hi Malengwa so very sorry to hear your news. You sum it up well about the changes in relationships whilst going through this journey. Sending you love and strength.

Thank you

Its still early days but I just wish I had longer with him.

I totally understand at one stage I told my hubby I want my old husband back I don't know who this person is living with me but I don't like him.  I was at work yesterday leaving him home working and he didn't respond to any messages even though he read them. He is very frail at the moment due to not eating or drinking and I was worried he had fallen or something so got a taxi home and there he is watching snooker in the living room. I was furious. And his answer was I think you need to see the dr and get some antidepressants your not coping very well

It was such a relief to read of another carers situation i did smile at last comments my partner hasn't got to much time left but his marbles still intact an maybe sadly his vocal chords he's constantly reminding me Well you gave your job up, That was by necessity not choice and now it seems i should be more than able to cope with farm animals land home his slowly getting worse conditions and constant needs requests and even demands. maybe get my wings in the next life cos I'm sure as earning them here..not being flippant but as I'm sure you know its exhausting   . 

I was immediately signed off on the sick from my job when my husband came out of hospital the 1st time..looking after someone so ill was much harder than my job. Luckily I get full pay for 6 months. Even when he ended up in hospital twice more within the space of a month I was still his main carer & I spent 12 hrs a day at the hospital as he wasn't getting the care he deserved. I was forever chasing nurses up to get his pain meds.Its not fair leaving a terminally ill patient in so much pain.

I felt sorry for patients who didnt have relatives to speak up for them.

Thought I’d post an update, because it might just be helpful to someone. So, my husband died in mid October. His oesophageal tumour grew to the point that he was no longer able to eat. In early September The decision was made to insert a stent, which he had previously resisted, but when the did the operation they were unable to insert the camera, so the operation failed. I was a bit cross with him about this as I felt that he was partly responsible for waiting too long. At the same time he was starting a second line of chemo. The first hadn’t been very effective - evidently, since the tumour had increased in size. After the failed stent operation we came back home for a few days, but there seemed no plan going forward and he was hardly eating anything, so I got very concerned and rang the consultant. Good job I did, because otherwise it seemed nothing was going to happen. They took him in to hospital and decided to give him a PEG. The operation seemed to go well, and he came home. He opted for 4 manual bölüş feeds a day. I had to learn how to manage and use the PEG, which was quite time consuming, and sometimes messy, but we got into the routine. The feed/bolus was delivered a months supply. Then he got an infection in the PEG site, so there was a lot of pus, and managing it became more difficult. We rarely managed to get 4 feeds a day in, and my husband started getting fed up with the situation. The dietician offered him the use of a pump to feed him overnight, which seemed like it might make things much easier. Another delivery of bigger bottles! However, the wound wasn’t healing, and kept leaking. I learned later that the first PEG inserted is temporary, and once the wound heals they put in a better, more permanent one. All the staff involved at the hospital were really lovely and responsive to our issues, but the internal bulb kept moving, and the PEG kept leaking. Then one morning, (after a troublesome night when I had slept on the sofa downstairs so I was nearby to hear him if he called out) he called me in, and not only was the bed wet from leakage (which was becoming a norm), but he had also bled a lot. I called an ambulance. The hospital was great. Gave him a side room, and so many teams got involved, but his health was becoming precarious. They replaced the PEG with the more permanent better version, but it didn’t help. Then they took him into theatre again to try to tighten up the wound, but again it didn’t really work. By now he was weakening. Hed started getting fluid on the lungs. He’d been in hospital a week or so, on drips, antibiotics, magnesium/potassium, saline etc, but he wasn’t getting any nutrition really. A decision was mad to insert a PIC line into his arm to deliver nutrients, and in he went to theatre again. I think the idea was to get him a bit stronger so they could stabilise him. However, after a day or two of this my husband decided he had had enough of being in hospital, and wanted to come home. They explained to him that if he did that he’d go home on end of life care, but he insisted that that was what he wanted. They took out the PIC line and removed the canulas and home he came. We then had daily district nurse visits, and 3 daily McMillan visits, which were brilliant and made things so much easier, I’m pretty sure that I wouldn’t have coped otherwise. After about 4 days they fitted a pump to deliver pain relief, and we got overnight nursing care, which was fantastic. Every night the nurse would have to get the on-call doctor in to up the prescription. My husband went downhill very quickly and was gone in 8 days. It was shocking, and my head was in a whirl. The nursing staff had tried to prepare me, but it feels unbelievable that a person could just disappear so quickly. He had one day of becoming incoherent, and 2 days of being more or less unresponsive, and then he just stopped breathing. My main reason for posting all this detail is because it may help someone else be prepared for what’s to come - although, of course, every outcome is different - but I wish, in hindsight, that someone had spoken to me in private about what to expect. In 6 weeks he went from being able to be out and about to passing away, and it was all a bit of a whirlwind. That all sounds scary and awful, but ironically, there were some more positive aspects. With getting so much support from professionals, our relationship improved dramatically, not that it had become really bad, but we became a team again. My husband got the end of life he wanted, at home, and he passed away quietly. Awful as it was to lose him, it felt a good death - as good as it could be. The support he got was outstanding. ALL of the nurses and doctors were just amazing. After he died, understandably, all that support stopped suddenly, and suddenly it was just me in a quiet house wondering what to do. That was weird, and difficult. Thank goodness for the dogs. Obviously, I have some regrets. If I have one bit of advice to give to anyone in a similar situation it would be to make the most of the last few days, and try to record stuff, photos, videos whatever. I feel that I lost about 3 days that I have absolutely no memory of, and they were his last 3 good days. The thing is, I didn’t really realise how little time we would have, and I was caught up in dealing with managing everything that was going on. I feel I somehow missed having those final conversations. Once I realised that this was really happening, of course I concentrated on sitting with him, and holding his hand etc, but I just don’t know if he even knew I was there. It was weirdly nice though, and I talked to him a lot. I hope he heard me. 

Hi Andrew, so sorry to hear about your husband, mne also died in October.

Different cancer but he also went downhill very quickly, and right at he end it was sudden, even 2 days before, he was chatty. 

There never feels like enough time, we had non stop nurses, hospice etc in his last 48 hours so he could die at home. The hospice is still supporting me, do you have any bereavement support?

 Theree is a bereaved spouse forum here, were a supportive bunch, just helping each other to muddle through.

My husband died last week just 3 months after being diagnosed. We didnt have much time to make new memories. Virtually as soon as he got diagnosed he started withdrawing from me. He didn't want to kiss me anymore, or hold hands..I could still hug him until the last couple of weeks when he had lost so much weight it hurt him to hug. We still told each other we loved each other but it really hurt me that he didnt want me to touch him at all apart from the usual nursing things. I no longer felt like his wife..just his carer.