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]

Hello, I'm new here. My MIL has breast cancer which she has told us is stage 4 since October. She's in her early 80s. I don't know anything about her treatment plan or prognosis other than that it's currently a course of tablets chemo she takes at home for three weeks then an off week. She is exhausted all the time, can't walk very far without being out of breath, she's nauseous, no appetite and has dropped a lot of weight in this short time.

DH has been taking them at their word that there's nothing to worry about, but I think they might be slightly in denial or perhaps a bit passive and not wishing to 'cause a fuss'? I fear I'm coming across as a ghoulish nosey one, but please believe me I want to help! He has agreed with me that he probably should now get a bit more involved and informed. Neither of us had any experience before with cancer or terminal illness.

If DH can go and be with them at a check up, what should he listen out for, or ask? What sorts of entitlements might they have that they're not asking for (I read that the GP/cancer nurse can do a form that gets a blue badge, for example). What sort of question would flush out whether the current treatment is extending her quality of life span (because at the moment it looks like it's doing as much harm as good, but perhaps it's a finite amount of chemo designed to knock something back and then they expect to move her onto a gentler treatment?)

Please please accept my apologies if the way I've written any of that comes across badly. I am sure this thread's got a vast amount of experience but also that it isn't a club anyone wanted to join.

Hi @TyneFilth
Firstly, sorry to hear about your MIL.
We're really for partners of people with cancer but I'll have a go.
You can get a lot of help and advice from Macmillan - they certainly helped my DH, including the Blue Badge.
On how your DH can support his Mum, he can suggest that it's useful to have a second pair of ears at the consults because there's often a lot of information to process. Other than that, it's about having a conversation with her about what support she needs.
None of this is easy for anyone.

If she has less than 6 months to live they can be fast tracked for full rate pip they did that for dh.

But at stage 4 she is going to pass away sooner rather than later. Drs will put you through invasive tests and it’s fine to say no if it’s too much for her.

Thank you both for this, I'll look at the Macmillan link and investigate PIP. I think that getting a straight answer on her prognosis is a high priority. If I was writing this as if I was FIL, though, I would be seeking as much treatment/testing/therapies as possible - it's clear to me that they're not keen on the fact that stage 4 BC in your 80s is terminal. And that's coupled with the "mustn't grumble" approach, and probably an insecurity when faced with medical terms, forms and so on.

I'm suggesting to DH that he first establish what levels of support (moral, logistical or other) they can accept without feeling infantilised. They have healthy pensions so they may not want to be seen as "claiming benefits" regardless of their entitlement. Then I guess it's just about fulfilling those wishes and making the most of the time that's left.

FIL isn't in the greatest of health himself so I'm also worried about what he's storing up by trying to do everything at home without help. So some targeted support from him would be useful, will see if Macmillan also cover that.

Just coming on to say that as your MIL is in her 80s and isn't already getting PIP, she won't qualify, but she'll be able to get Attendance Allowance instead.

My two top suggestions are:

1. take a notebook to every appointment and write down exactly what everyone says, names, dates, next actions etc. The NHS is very far from joined up and it can be difficult to know who to contact or chase up if you don't do this. Also as said above, there is no way anyone can take everything in first time round so having it all written down is really helpful.
2. get the palliative care team involved as soon as possible. They are the absolute experts in these situations and will arrange helpful things you didn't even know existed. The GP should be able to do a referral or if not, he will know who can. If they can arrange a 'soft' introduction to your local hospice as well so much the better. A lot of people miss out on the services they offer because they mistakenly think they're only for the very end of life.

Macmillan services vary a lot over the country but the palliative care team will know what's available where you are.

The treatments can kill you for cancer. They don’t prolong life like the public think they take you to the brink of death and hope the tumour dies before you. Dh had cancer twice 40 years apart, nothing changes.

It’s brutal and dehumanising.

@FormerlyPathologicallyHappy I'm so sorry that happened to your DH and to you, and I'm sure it happens to many others. But it wasn't our experience. DH's cancer was so advanced that no curative treatment was available, so he was spared the difficult decision of whether to try something aggressive.

He had a couple of years of palliative treatment which was relatively easy and he was able to enjoy life, despite the cancer, until his last few weeks. @TyneFilth that may be the case for your MIL as well, so it's worth asking about whatever treatment is suggested and why rather than automatically turning it down. This might be a conversation best held (or repeated) between just your DH and the medics, there were many things I needed to know that my DH wasn't ready to deal with.

Family left on Thursday. I’ve sat on the sofa pretty much until today with no energy at all, my body hurts, and my brain is not functioning at all well.

I’ve an endless list of things to do but no energy to even think about it. It’s a right effort to even make a cup of tea.

DH funeral was perfect but afterwards I realised as I was thanking all that came that there are probably many I may never see again as they were his friends from his hobbies etc that I’ll never be a part of now.

Not really sure what the future holds from now on or even how I’ll navigate my life without him.

DB wants to come and chat things over apparently, I’ve said I’m not really up for that, nor will I ever be. Bill hasn’t rung but I’m wondering if the kids blocked him but he did send me an email but I’ve ignored it so far as it didn’t ask any questions.

The kids are worried as I said I’m taking a week off to just rest next week, they keep on saying I mustn’t become a hermit (I’ve always said I fancy that life, well at least for a week or two).

Take the time. It's intense stuff and for now, self-care (whatever that looks like) is what's needed.
As for being a hermit, not everyone needs other-people energy all the time. Sometimes the silence gives us the space to ask the big questions like: Who Am I? or Do I Want a Cup of Tea?

So glad you managed to make the funeral perfect @Hisredipad , that's a huge achievement especially in your circumstances.

Willowkins is spot on. Extroverts often don't understand that however much introverts enjoy being with others, it drains their energy, and you can't spend what you haven't got. Let the kids worry if they must, that's not your problem to pick up.

Did you all feel you’ve lost your purpose? I’ve gone from 100 miles an hour when looking after DH to zero.

im doing things, getting on with life things, went to physio today, went to the church and tidied the dying wreaths, cooked myself a nice dinner, made batch food, scrumptious prawn sandwich for lunch and opened lots of post to find one of DH’s small pensions is going to give me £100 a month (but if I remarry or cohabit that’s the end of it 😳).

I want to do my hobby but I can’t be bothered to get the stuff out, I went to one of the groups I was in with all the stuff in my bag yesterday but then made myself a cup of tea just sat chatting to the others whilst they got on with theirs.

nearly fell over backwards as Bill came to visit. I did get a warning as he’d been in contact with one of the kids. Apparently, he’d like to keep in contact and says it’s a shame we haven’t been in more contact over the years. He seems to have forgotten a lot of the crap he caused a long time ago. I won’t be making the effort as I tried a lot in the past. I can’t help feeling there was another agenda, but I wasn’t feeling my best when he got here and shed a few tears, so I’m wondering if whatever he came to say he put off. I’m wondering if he thinks he should’ve been in.DH’s will. He wasn’t. (Part of me wishes now I told him that when he was here because I expect he’ll be back again.)

Yep. I can relate to all of that.
It has got better for me over the last year or two but there are still times I feel like I have no oomph. Then I have to work out what's really going on in my head.
Sometimes the progress seems tiny but I think that's because it takes a huge amount of energy and creativity to invent who we're becoming (still a work in progress in my case)

Hi

Can I join please? My lovely wonderful husband has advanced cancer. It started in his bowels in the summer of 2021. They removed the tumour, but the cancer had moved to his liver within six months.

He has endured just under three years of treatment, chemotherapy, trial drugs, all worked for awhile but inevitably they stopped working. We were told on Christmas Eve last year that the current treatment has stopped working and there were no more options.

In January, he went to hospital with jaundice. They tried to drain his liver but this was only partly successful and they said they could do no more. Is discharge from hospital loss quite dramatic and when he got home he just sat on herbed and wept - he believed he would never come home. He's been at home with me for three weeks now (it's just me and him) and the hepatic encephalopathy caused by the cancer in his liver is getting worse and worse. It breaks my heart to see my lovely, intelligent, amazing husband unable to communicate and getting so so confused. But he still tells me he loves me and his only apparent source of joy is holding my hand as he drifts off to sleep, or cuddling up to me all night.

He has an hour or so of absolute clarity two weeks ago, when he told me this was no life, and he wanted it to end. But of course there is no choice. I hate the fact that he's being tortured by this illness. He is at high risk of catastrophic bleeding, and the Palliative Care nurse told me this would take two or three minutes and he wouldn't be aware of what was happening. A tiny part of me wishes this might happen even though it would be very traumatic for me, at least he would be out of this torture as he told me he wanted. But selfishly, I want him to carry on for as long as possible, even though it's killing me to see him like this. Then again, selfishly, I know that his confusion is only going to get worse and worse and I'm terrified of how difficult it will be. I wasn't prepared for this, I did not realise that cancer in the liver can cause such problems in the brain. It would all be 1000 times easier to deal with if he was "himself".

I guess it's a relief that there is no choice for us to make, because I could not make one.

He is so frail, so skinny and wobbly on his legs. But he's still eating although not a lot. His pain is well-managed.

I don't know why I'm posting really, just to say really that I'm absolutely and totally heartbroken and I don't know how I'm gonna get through this. He made his wishes clear that he does not want to go to any kind of hospital or institution, that he wants to stay at home whatever it takes. I've promised him this too and I will make sure that he is able to stay here with me. But it is so so hard.

@certainagedwoman you sound like you are doing everything you possibly can for your dh and as hard as it is, you’ll get through it. Try and take each day as it’s comes. Have you got any support? Are the District Nurse or Hospice team helping/ checking on your husband?
this time last year I was in a very similar situation. My husband hated the Hospice and begged to come home. It wasn’t what I wanted and it wasn’t easy but months on, I was glad I did that last thing for him and let him die at home as he wished.
if you’re able to get any help, do take it. It’s a traumatic and emotionally draining experience and so sad and unfair.
Most people on this thread have been through similar and understand how devastating it is.
Feel free to post as it can help to just write how you are feeling x

Thank you

Yes I have support from district nurses, carer once a day who washes him (bathroom not accessible), and amazing palliative care nurses.

Plus, quite a bit of practical support from friends, family and neighbours, as I cannot leave the house really. People are bringing me shopping etc.

His sister was just here for a few days but has left today. While she was here, I actually managed to leave the house for short periods. She's the only one really that I feel I could leave him with (he needs a lot of very patient help with the toilet)

My heart is broken so badly it physically hurts

He’s in his encephalopathy and morphine induced weird sleep state and I just laid next to him and held his hand and told him through my tears how much I love him and how I don’t want to let him go, but I know he has to . He kept gently squeezing my hand.

Sorry for typos

I meant to say that his discharge from hospital was delayed and traumatic for him and as soon as he got home and into our bed he just sobbed and sobbed.

@certainagedwoman I'm so sorry but I'm glad you've found us. Please try not to worry about how you will cope. Most of us on here have somehow coped with things we could never have imagined. Looking back now, I can't quite believe how I got through it, but somehow I did, and so will you.

We had some similar moments of honesty and complete togetherness and though they were devastating at the time, they're now some of the memories I treasure the most.

Thinking of you both and sending love, strength and courage xx

@certainagedwoman, i joined The Storm at a similar point in time to you and am so sorry to read your post, it’s not so dissimilar to my own DH desperate to be in his own home after three months in hospitals.

I’ve found it an enormous comfort that members here understand my feelings and pain. Our inner strength powers through but do take as much respite for yourself as you can, I’m definitely burnt out now 💐💐💐

I started reading this post from the beginning the other day, it’s helped me a lot to find my current state is quite common and makes it not quite so frightening as I had some of the most bizarre feelings.

I thought grief would be the same feelings as I’d suffered when DH and I thought his life was at an end in 2023.

I can’t describe it but it literally sucks the life out of me often catching me unaware. I’m having multiple naps a day but they don’t seem to be restorative.

Welcome @certainagedwoman but I'm so sorry for the reason you're here.
My DH also had bowel cancer that spread to his liver and beyond. His last 5 months were the hardest for him. I was in a state of denial until the last couple of weeks.
There's so much honesty and support on this thread - you can be very sure you're among people who get what you're going through. Sending a hand hold and a cuppa or whatever gets you through.

Thanks everyone for the messages. It was a hard night. He woke at 3 am really wanting a drink of water. But when he's in that confused state at night, it's so hard. Managed to get water into his mouth but he couldn't swallow, it just dribbled out.

He then said he needed a wee at 6 am, but unfortunately he'd already done it. More bedsheets to change. He's in pull up nighttime pants - have to look and see what is more effective for holding the wee in.

I sat with him this morning and said that I was sorry if I sometimes sound like I'm shouting with him or get cross when I'm trying to get him to e.g. sit up to drink or stand up from the bed. He could obviously hear me, he said he knew I was doing my best.

I then told the cat off who was climbing on his pillow. He asked me what the cat was doing and I said "oh he's just being a little fucker". He then laughed out loud and kept saying "little fucker" over and over.

I wish I knew how long this would go on for. I don't want him to go soon but I know he wants to. This is torture for him, I know he hates it.

@certainagedwoman i used a plastic syringe, like you get for giving kids medicines, to gently squirt water into DH’s mouth when he was struggling to drink. I very gently squirted down both side of the cheeks and then a little across the lips to wet them.

I also bought ID form incontinence pads from Amazon, in extra plus, DH wasn’t moving much so we put one under his bottom and then another tucked under but wrapping up over his front. They were doing this in the hospital and it worked well. Kings hospital taught me a good way of dealing with a bowel movement with a bed bound patient and ID form pads. PM me if you want the details as this proved very useful once DH struggled to get out of bed and walk.

The hospice team arranged for me to have a hospital bed for DH which was an absolute saviour on my back and then I could sit him up for ease of drinking medicines et cetera eating. It was an easy option for me as DH was in our lounge in one of our single beds at that point. It arrived within three hours of me, being on the phone in tears of not being able to cope.

thinking of you, hugs 💐💐💐

Boots have incontinence pants for men. They're soft and comfortable and look much like real pants. Easily cope with a normal wee. https://www.boots.com/boots-staydry-men-night-pants-medium-10-pants-10294810

I too found that being on the phone desperate and in tears actually got things moving so don't hold back from telling them what it's like.

Hope you have a better day with some good spots in it.

@certainagedwoman can he use a straw?
My dh went on for weeks with hardly any food but could drink the supplement milkshakes. He was unable to swallow without choking for over a week. It really was awful as he said he was hungry. I gave him ice cubes but he also struggled with them in the end