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]

@seethebeauty84 I've just joined the thread too. How long ago did he get his diagnosis and what chemo is he on? My Husband is two and a half years down the line but we're running out of time now. It's shitty.
The whole treatment thing and dealing with side effects was such a steep learning curve and then there's the emotional side to go with it.
Do your kids know or understand anything? I find that a lot of my heartbreak and pain is my grief at what my kids are losing, not really so much about me.

@bloodywhitecat Thank you so much for the message. I'm so sorry you lost your love. How are you doing? I've got my parents who are supportive emotionally, although my relationship with my mum is slightly strained, but they're in their mid 70s now so do help with the kids but struggle a bit given they're so young and there are 3 of them. My husband's family are useless and emotionally unavailable. I have no siblings but do have wonderful friends who are trying to be as supportive as they can be. But they're all part of happy families with life just going along swimmingly and I cannot help but feel like an outsider and angry that this is happening to my family (although I would not wish it on anyone else obviously). I have started seeing a therapist.

@Willowkins Thank you, I appreciate the welcome. How are you doing?

@linspins Ugh I'm so sorry to see you're going through this too. Is your husband off all treatment now? At home or in hospital / hospice? How are you doing? Seems a ridiculous question. And how are your kids?

I totally agree, I am heartbroken for myself but the main pain is for him (how on earth do you cope with being 38 and knowing you're going to die soon and you will miss out on your kids growing up and the youngest two will likely not even remember you?) and for the kids. I want to protect them from this pain so badly and feel so helpless.

They are so young (1, nearly 4 and nearly 6) so we have just told the older two that he's got a bad stomach and needs strong medicine which makes him feel poorly. We haven't said he's going to die as we don't know when it will be and they have no concept of time. I have absolutely no idea how I am going to raise these three tiny people all alone when grieving, the whole thing feels impossible.

We're 11 months in. He's inoperable so chemo only. We had got into a bit of a rhythm and were living in the moment, having moments of joy, but found out last week that first line chemo (Capiri) has stopped working. He starts Capox today. Having that first treatment line run out when we hoped it would work for a lot longer (and presumed it was as he seems so well in himself) feels almost like getting the initial diagnosis again, hence me choosing now to reach out. I feel like we're at the beginning of the end because, as you will know, only 2 chemo lines seem do actually do anything (unless you can have immunotherapy, which he can't) and so I can't help but think he will die within the year now.

How is it possible to survive this pain? Sending so much love to you and everyone else in this SHITTY SITUATION. UGH!!!!!

@seethebeauty84 and @linspins so so sorry, sending love and strength. Will join you in a rant and kicking a few trees.

Hi @seethebeauty84 that's so nice of you to ask. I still get some anxiety - especially when I've got too much to do and I get frustrated became nothing stays done. Also, I want to stamp my feet and say it's not fair that I have to be both parents And sort out insurance AND take out the rubbish. But I'm still here and I'm getting back to my normal self. There's a little bit of hope in that.

@Willowkins My husband had two lines of treatment that worked well, and then the second one stopped working and he's not well enough to have had more than one round of line three. We had a few false hopes along the way....they were going to operate on his liver at one point to remove the cancer, so he had to be off chemo for a few months, but by the time the date came round a scan then showed more growths and operation was not viable any more. Even recently, he felt that the third line of chemo was helping, but a chest infection floored him fora week and it's all been downhill since then.
We thought we'd have more time. It's a huge crushing blow to have got so far and then suddenly be so ill so quick. I don't think either one of us were prepared.
I am thankful that my kids are a bit older, (13 and 16) and will remember him...but it also makes the pain more real for them as they understand the losses to come. But we do have good memories and photos etc.
One thing that makes me mad at my husband is that he didn't immediately leap into 'save memories and create stuff as a legacy mode'. I would have written down memories and silly thoughts and written the kids cards, and bought my wife an eternity ring and ordered flowers for next year....but this is stuff I couldn't tell him and now it seems a bit cruel to try...,maybe just a few cards?
He's at home not in a hospice but we are going to meet with them for the first time tomorrow to get info. I don't know what to expect. His heart and lungs are slowly packing up as they get overtaken by cancer. It's utterly shitty.
Our kitchen looks like a pharmacy. Drugs 'r' us.
I've got super ex-colleagues who are also my friends who have created a meal rota to bring us dinners. I'm finding all the 'letting people know updates' very draining, and have tried to create a few message chains so I only liaise with one person and they send out info. It's exhausting.

I think tbh it's a man thing, my DH didn't do any of those things as I dint believe he ever really believed it was really terminal and by the time he did it was too late

MrW managed to write a letter to the kids. It wasn't very long - I think he just found it too hard to express his emotions. As for me, I've saved the last phone message so I don't forget his voice. There's no right or wrong way to do this. Not even a least worse way. It just happens.

I've saved all my emails he sent me during the day and a voice message x

@linspins I know just what you mean about getting so far and then everything falling apart so quickly. I suspect this is fairly common as treatment is a fine balancing act and when something goes, it has a knock on effect that's hard to recover from. I didn't appreciate that at the time and I kept thinking 'I don't understand how it's all gone so wrong so quickly'. But a few months on I realise that I should probably have been thinking 'I don't understand how they managed to keep him so well for so long'.

We were all very glad that he managed to get a hospice bed in the end, it gave me the opportunity to be his wife again instead of his carer. Once he was admitted they did continue to try to treat him, and if they'd been able to stabilise him they would have discharged him, so don't think that an admission necessarily means the end.

I am envious of those of you who have voice mails. I was too busy being Chief Organiser of Everything to remember to get that sorted.I hope today's meeting has been helpful for you xx

Just wondering whether anyone a bit further down the line than I am has had the same experience when sorting things out. I've just about been able to start on his personal possessions, but I have been absolutely floored by the difficulty of getting rid of all the things associated with his illness. I had expected to be able to get rid of these easily, if not gladly, but actually I'm finding it devastating to be getting rid of all the physical evidence of what I did to take care of him. There are absolutely no nice memories associated with any of this stuff but somehow it represents how much I loved him.

I have no desire to live in a house that's a cross between a pharmacy and a well equipped care home, so if anyone has any suggestions for how I can rethink this I'd be glad to hear them.

Monty I still have his medical notes. There's no reason to keep them. It's just that they were so important during his illness and I guess I'm still adjusting. It takes time. All the prescription tablets and the morphine went back to the pharmacy so that was straightforward. And I found a couple of charities that send unused medical equipment abroad so nothing got wasted.

Snap, I still have all of his paperwork and hospital appointments - sometimes its the strangest things that are the hardest to get rid of.

I actually had to phone up and really snarl about his hospital bed that was in the middle of the living room - it took over 2 weeks to collect and then only because I lost it.

Meds got taken to the pharmacy and equipment went to the hospice.

I am 15 months down the line and still have all that stuff too (except the morphine, the DN collected that). I have just plucked up the...courage? strength? I don't know to apply for his medical records as I want to know if he was failed in the days before the stroke happened.

Wow thank you everyone, it's not just me then. I still have the medical notes too. I'll stop beating myself up about it.

I still have the medical notes and still have the meds in a bag waiting to go to the pharmacy - 2 and a half years later. I also still have the bag with his stuff from the hospice, still not unpacked.

I’m reliving it all acutely at the moment as my dad is dying. He and my mum weren’t both admitted to hospital on the same day two weeks ago. She had a heart attack, he had a vascular crisis, then an amputation which failed to stop raging infection. He’s in hospital, dying and she was sent home today, very weak, and grieving. It’s all horrific and I’m reliving so much of the awful weeks at the end for DH, not least the exhaustion of being the main carer.

@SchrodingersKitty ((hugs)) x

@SchrodingersKitty I'm so sorry to hear what you're going through. Not at all surprising that this is a trigger for those memories. Throw in some disturbed sleep patterns, maybe some panic attacks and it's no wonder that you're also exhausted. Can you get help?

@SchrodingersKitty that sounds truly horrific. I hope you can get some help from somewhere. In the meantime don't beat yourself up if you can't do everything, in those circumstances no-one could. Sending love.

@SchrodingersKitty oh my goodness! You poor thing. Sending hugs to you. I do hope you have people who can support you too. 😔

I had a phone call with the hospice today who had received the handover phone call from the oncology team, who have now said there's nothing more they can do. The hospice lady was urging me to read through the pack of info/leaflets we got on Wednesday from them, to make sure my DH could specify what he wants. And soon. She told me that is his medical circumstances, it can go downhill very rapidly. I asked if she thought it could be this weekend, and she said that's possible, or it could be a few weeks. I'm now terrified. Cos me and DH haven't talked yet about what he wants (he wants to live. That's not an option). And I'm scared that I'm going to wake up tomorrow and go into his room and he won't be with us any more. It's not really likely, but it's a tiny bit possible.

And it can't be over yet. We haven't finished yet. I still need him. I'm absolutely in pieces. When he goes, it's half of me gone too. We've shared so much, and we're a team. I need him. 😭😭😭😭😭

@linspins
There's that moment, when the realisation comes. I remember feeling kind of defeated.
It really was quick (a few days) after that so in a way they're right. And it's things like resuscitation, pain relief that they want to know about so it's helpful all round if he can let you know. Maybe you could write it down and seal it up in an envelope, only to be opened in emergency, so it doesn't feel so immediate.

Whatever happens, please don't beat yourself up about it. You're trying to be strong for him and for your family but save some compassion for yourself. Hugs.

What a long and exhausting day today.
My DH was very sleepy and could only form one word answers this morning, and after he'd been to the bathroom, he said he couldn't wee. He told me he had stomach pains and hadn't slept despite his drugs and sleeping tablet. He asked for morphine and paracetamol, then went back into a doze. I panicked a bit and called the hospice for advice, and they sent the district nurse round. She was so kind. I imagined she'd rush in, check him, and zip away again. But she was in no hurry, and sat chatting with me for quite a while, about how I was, asked about the kids and told me about how the district nurse team worked and all the useful info. She was just one of those very special people.
By this time DH had managed to wake up and have a wee etc, so panic over.
She organised the hospice to prescribe our 'just in case' pack....never knew there was a thing like this, would happily never have known. It's a pack of drugs you keep in the house, just in case of emergency situation, that a district nurse or hospice nurse could administer to help make a person comfortable and calm and float away and die. So that a paramedic doesn't have to cart you off, or anyone be traumatised by their loved person being in pain or distress.
I never imagined a sunny bank holiday Sunday would see me driving to a pharmacy to pick up a big pack of drugs like these.
DH had a few of his running club friends over to chat and hang out. They brought beers and pork scratching to recreate their running club night pub visits. It was sweet to see all these grown men be so considerate and a bit emotional.
I just tucked DH in, and gave him a cuddle. It shocked me how rapidly he's lost weight. Literally in less than a week he's loss so much muscle. His legs are so thin. I wish I could sleep next to him but his breathing is so fast and noisy that I'd never sleep. His face is looking drawn and it's awful. He was such a beautiful handsome man.
Another day over. Each extra day should feel like a gift but it's also hard and horrid. I know when he's gone I will wish to turn the clock back and hear his voice once more, or kiss his neck once more. But I also hate to see him brought down like this.

@linspins what lovely friends your DH has 🥰

It's the bittersweet time, you don't like seeing them like this but the alternative is equally as horrific. My DH was brought home from the hospital in a coma where he hung on fir 2 days, it would have been his worse nightmare. I slept on the sofa at the side of him. ((Hugs))

@SchrodingersKitty , @linspins , @MontyDonsBlueScarf I just wanted to say I’ve been reading and thinking of you all. I want you to know you aren’t alone, I’m here along with you.