Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

@certainagedwoman I’m very grateful to you for sharing this, I now have an idea as to what to expect. I’m sorry that you’ve gone through this too.

I’m dreading telling my DD that her wonderful Daddy is dying 💔

You’re welcome. As I said, everyone is different and your DH might not take the same course, but he is likely I think to get hepatic encephalopathy(what I referred to as “confusion“ for want of a better description) if the cancer is bad in his liver. It is very cruel. But it really does come and go. When he had been home a week he had an hour or so of being completely lucid, 100% his old self.

We didn’t have children, so I have no idea how you’re going to tell your daughter. There may be others here with experience who can advise you better. It’s so heartbreaking, there are no words. I’m still haunted by those weeks I spent looking after him at home. But you need to get him home if you can, Only you will be able to look after him with the love that he needs. Clem’s discharge from hospital was delayed, he thought he would never get home. When they brought him up to his bedroom and he lay on the bed, he stopped with relief at getting home. Even when he was really sick towards the end when I lay in bed with him and held his hand and told him I loved him, he would squeeze my hand. You have to hang onto those moments.

sending you huge hugs, and I really am so so sorry that you’re going through this.

Was he agitated when confused @certainagedwomanor even tempered with it? It does sound likely that he will also suffer this. I will make sure I treasure those lucid moments x

I think he got a bit agitated only once, he decided he wanted to lie down on the sofa which really wasn’t safe, rather than going to bed, and got a bit agitated, demanding that he had to do it. But I just went with it until he relaxed enough for me to say why don’t you come to bed and he did. And would sometimes get a bit frustrated because he wanted to hold his cup by himself, when I had to hold it too, because otherwise the drink would go everywhere with his very shaky hands. So little frustrations really.
He found listening to music very calming. Tried to watch TV programmes but he soon found them too confusing to follow.

I’m expert, but I think it probably depends on his temperament in general and your relationship. He was really quite sweet a lot of the time and funny too. But it was so so hard to see him deteriorate, I won’t pretend otherwise.

One thing you might want to ask him before he starts to deteriorate too badly is how he feels about having visitors once he’s getting very confused. My husband didn’t want visitors apart from his sister and one very close friend, he didn’t want people to see him like that. The doctors had told him in hospital that the confusion was going to get worse, so he made a few phone calls to say goodbye to people while he still could.

again everyone is different, but we took him into A&E as soon as we noticed him going yellow, he was then hospital for about three weeks (They wanted to put a drain in which they did, but the cancer was so bad it didn’t make enough difference) and then around four weeks at home before he died.

This is very similar to our experience, noticed yellowing and took him to A&E. They put a stent in with a 50/50 chance of it working and while it seemed to be at first, it soon plateaued and though they discharged him after two weeks, two days later we came back in due to his levels increasing again and are currently still here.

I will discuss with him about the likely confusion and visitors as he is a proud man and I don’t think he would want people to see him like that either. Thank you again, I would’ve had no idea x

So sorry to hear the reason you're here @missinghimalready but I'm glad you found us. This thread is a safe space.
My DH was also diagnosed with Stage 4 bowel cancer and it had metastased to his liver and lungs but not brain.
Immunotherapy, then surgery and chemotherapy bought him some time and we told the children enough to explain why mum and dad were acting differently but not enough to stress them out. They were 11 and 14.
Nearly 3 years later, by which time he was in hospice, we told them that the medicine wasn't working and they came to say their goodbyes.
We got a lot of advice from Macmillan and also help from the hospice including counselling for the kids. It's still heartbreaking.

No problem. I’m happy to help if I can. I didn’t know a thing. He had bowel cancer diagnosed in the summer of 2021, operated on, all good. But then the first post op scan in February 2022 showed that the cancer had metastasised to his liver. He went through early three years of treatment, chemo, etc, with various side-effects, not complaining once. Then in December last year we started to see the effects of the cancer rather than the chemo. He was in a lot of pain and taking opioids so asleep a lot of the day even before January this year when we went into hospital with the yellow skin.

we knew it was very likely terminal, but chose to pretend that it wasn’t if you know what I mean just kept doing what we could and trying to keep normal and happy. I didn’t Google what might happen towards the end because I didn’t realise (or maybe Just couldn’t admit to myself) that we were actually that close to the end. My cousin died of cancer last year and she was completely herself, her pain was well managed, and she just got weaker and more tired and sleepier until she fell asleep and didn’t wake up. We presumed it would be like that with Clem, I guess. Sorry, didn’t mean to make this allabout me.

Does he want to spend his last weeks at home? That’s something that the Palliative Care team in the hospital will probably ask him. Also, If he does say he wants to stay at home,they may ask him if he wants to come back to hospital if he gets an infection or similar. That’s my experience anyway. If it seems like there’s not much more they can do for him, don’t be scared to be assertive about getting him home. Home is definitely the best place, well in my opinion anyway. We had carers coming in every day to wash him, District Nurses to change dressings, and the lovely, wonderful Palliative Care nurses from our local hospice. This was all arranged by the Palliative Care team at the hospital. But you may well not be at this stage yet, But good to start thinking about it, I think.

I’ve also got experience from the other side, well I mean of being in hospital. I was in hospital for nearly 11 weeks from March to June this year. So I know how horrible it can be In hospital, even when you’re not terminally ill. Get him home. x

Just some thoughts on the home/hospital/hospice issue. It's important to understand someone's wishes but it's also important to understand that these can change. Both my mother and my DH wanted to be at home but towards the end, both of them realised that they would be better off in a hospice and were grateful to get a place. I would have given an arm and a leg to have kept DH at home because that's what he originally wanted, but as it turned out I just couldn't keep him comfortable at home and we were both relieved when he got a hospice place. I stopped feeling guilty about it when I saw that it took three nurses, drugs and equipment I just didn't have access to, to make his last days comfortable.

I would strongly advise getting a 'soft' introduction to a hospice if you possibly can. We were lucky in that DH was admitted to the hospice for 48 hours for a blood transfusion, early on. Before that he was scared of the idea of going in. After that he would always ask 'can I have it in the hospice' for any treatment that was suggested.

Great advice. I hope I don’t come across as pushing the “at home” option. It’s just what my DH was adamant that he wanted. In fact he was terrified of having to leave the house to go back to hospital or Into another facility. Incidentally, we were told it was extremely unlikely that a hospice place would be available and that he would almost certainly go into a care home if I couldn’t look after I’m at home.

in my case, it was very hard looking after him at home for those last four weeks when he came back from hospital, but that was mostly the emotional impact of seeing him deteriorate every day and the lack of sleep due to him waking up suddenly in the night and me having to jump out of bed to look after him. We had carers, District Nurses and Palliative Care Nurses coming in, and also I had a wonderful neighbour who helped us several times when he was accidentally on the floor or when I couldn’t help him from the bed to the commode on my own. I won’t go into details, because I don’t want to disrespect him by sharing too much of what he went through publicly like this, but there were definitely times where only I, who loved him so so much, could comfort him and look after him as well as he needed. Because he had that “confusion“ (I call it that but it’s a lot more than that), He really needed me there with him 24/7. And of course, when he did have his little lucid moments, I was always there.

but of course everyone is different, and not everyone’s cancer progresses in the same way.

I’m haunted daily by those weeks, it kills me to think of what happened to my lovely strong amazing man. And I also torture myself, wondering if I really did look after him as well as I could, if I told him I loved him as much as I should, if there was more I could’ve done.

My DH had been in the hospice for a month to get his pain under control and it really was a lovely place, he was so relaxed there. That said he wanted to be at home and when he got admitted to hospital they asked what I wanted to do. The hospital was great and managed to get him home in 24 hours. For us it was the best thing, we had the district nurse coming in. They tried to get Marie Curie in for the nights but they didn’t have staff so I slept downstairs with him.

@certainagedwomanI understand the questioning yourself, I’m already questioning whether I could have been more assertive and done more to avoid delays in scans etc before he was able to start treatment but want to say that it is clear from your posts just how much you adored, loved and cared for him.

DH has said that he would rather spend the end of his life in a hospice rather than at home, there is a certain one he would like to be in so I will pray and do everything I can to get him in there when the time comes. I think we are likely to be discharged home next week but will see as who knows what will happen from day to day. His biggest fear is being in pain / a painful death so being in a hospice with staff and medication there 24/7 I guess would be a comfort for him. @MontyDonsBlueScarfthat makes sense about a soft introduction, potentially for DD too with some counselling.

I plan on telling our 6 year old DD this weekend. She knows he is poorly and the doctors are trying to help him feel better but I need to let her know we do not have much longer with him.

Thank you @WillowkinsI know the ages are very different with our DC but do you have any advice re dealing with telling them? I’ve read that honest and direct is the best way, would you agree?

@missinghimalready Yes, there are 1000 things that I can torture myself over about what we did or what I did or didn’t do. But his sister came over from Germany to visit and a very very good friend came down for a weekend too, and they’ve both said there is nothing more I could’ve done for him and have reassured me that he felt absolutely safe and loved at home. Thank you for your nice words, I’m floods of tears here. But that’s a very regular occurrence to be honest. He died back in March, but it feels so much more recent (I was in hospital for nearly 11 weeks and my grief was kind of on hold during that time I think. I won’t say why I was in hospital because I think you’re not meant to on Mumsnet, but let’s just say I decided that I couldn’t live without him).

Also, just to say, with the caveat again that everyone is different and every cancer is different, but my DH was not in any pain at all in those last few weeks. He had a fentanyl patch which I changed every three days, and he also had liquid morphine which he was allowed to have as a top up as much as he liked really. This meant that he was asleep a lot of the time, but he certainly wasn’t in pain. I must’ve driven him mad by asking him 10 times a day if he had any pain, So that I could give him the Oramorph if needed.

Another thing to add, whether he is at home or in a hospice, the hospice nurses were absolutely amazing. I don’t know where you are or what your local one is like, but mine had a 24/7 line that you could call for advice or if you just wanted to talk to someone.

there is a great website about telling young children about death, I’m rushing out soon but I will see if I can find it for you. Sending you huge hugs xx

@missinghimalreadyFound it. https://www.childbereavementuk.org/explaining-to-a-child-that-someone-has-died

I think all of us question whether we did enough. I once broke down in front of my DH and said that I was so sorry I hadn't done more. I can still picture his look of utter astonishment and that's a great comfort to me.

The truth is that when someone is that ill, it's a bottomless pit. There's always more that could be done. There's always something that could be done differently. You fight like a tiger for them and you give them the best care you can. On top of that they have your love. Be proud of that, not sorry that you're not superhuman.

Sorry, just realised that that link is about telling a child someone has died, but I’m sure a lot of the principles are the same and you might find it useful

@missinghimalready This one seems more appropriate to your circumstances

@missinghimalready
Yes I think honest is best but we used age appropriate language and timing is key. We also said they could ask us any questions - we didn't what them to feel later that they had been lied to or left out.
We used a booklet supplied by the Macmillan nurses but it's also on line. It's written as if advising the person with cancer which can be jarring but the principles are the same and there's also a link that addresses the different age groups.
https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life/preparing-a-child-for-loss

Thank you @certainagedwoman I can empathise with your feelings and viewpoint at the time of your hospital stay. I am so grateful for you sharing this with me, I imagine it can’t be easy. Sending hugs to you too x

Winston's Wish were really supportive to us when I had to explain things.

Our son has ASD so we didn’t ‘fluff’ it up at all, we told him exactly what the doctors had told us and told him honestly if we didn’t know things. School may have counsellor’s in place. We tried to keep everything as normal as we could

Im five days short of being on this post for a year. Thank you to everyone that supported me during the difficulties of late December last year till early January and the crap that followed afterwards.

I was until about a month ago doing reasonably well but have just had a lumpectomy for breast cancer found on a routine mammogram, hopefully nothing too serious but do feel I’ve been punched in the stomach by cancer, am enormously angry with it all. Bizarrely have just spent a night on a ward with DH’s team of macmillan nurses who were just wonderful to me.

Struggling a bit tonight to make sense of the life I live, fortunately in the back bedroom is the latest grandchild who’s gurgling laughter brightens my days.

i wish you all a peaceful Christmas xxxxx

@Hisredipad that’s pretty shit !

Thanks for the update @Hisredipad
Has it really been a year?
I really do feel we've suffered enough and cancer can do one. I hope you get the results you need.

Please may I join, I may be quiet for now as this has been such a shock, DH was diagnosed with Stage 3 stomach cancer, it had spread throughout the liver, at the end of November and only a week later we had the devastating news that he has metastases in many areas of the brain.

He starts chemotherapy at the end of December (we were delayed seeing the oncologist as a clinic had to be cancelled last week) which I think is delayed somewhat by Christmas. Due to the brain involvement there are higher risks of complications and they are concerned he may be at risk of embolisms but don’t want to start blood thinners due to the risk of bleeding in the brain.

We have been left under no illusion that the treatment is not curative, it is hard to have any idea of what will happen and in what time scale.

I feel he is slipping away, he gets so confused and tired, fortunately I stopped him driving before the head CT as it was largely ordered due to my concerns, but that leaves me as the only driver and my own health is not good, mainly due to fibromyalgia which is flaring badly due to stress and disturbed sleep. Steroids have helped his headaches at least so we are getting a bit more sleep.

Thanks for “listening” just needed to get it out somewhere 😔