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]

@BloodyMaryisthetruth whine on, we get it.

If I had a magic solution I'd share it but sadly I don't.

Hi @BloodyMaryisthetruth
I'm also wondering how everyone is doing.
There was one thing that helped me to stop snarling at perfectly nice, ordinary people. That was doing something positive for myself or taking myself off for a treat. It could be quite small like buying myself a pretty notebook for journalling or more ambitious like a trip away for the weekend.

I hope that's possible for you.
Meanwhile, I've been sorting out my bedroom finally. It had been used as a dumping ground for so long that I'd forgotten the carpet was beige. I've bought myself a gorgeous red and orange rug.

@BloodyMaryisthetruth its healthy to have a little whine about the unfairness of the situation you are in. We couldn’t go anywhere for the last 18 months or so. The last 6 months, it wasn’t even possible to go for a coffee. Make the most of what you can do.
I’m slowly wading through admin and claims and hitting hurdles at every turn. Nothing is straightforward or working out the way I thought it would. Dh worked really hard but left a total mess behind. We’d not updated our Wills and I’ve since discovered he’d not updated beneficiaries or left any clear instructions about anything which has caused me masses of stress and unnecessary hoops to climb through. I’m hoping it will all work out in the end but unfortunately I’m not a patient person & want things sorted straight away 😌.
I've brought dh’s ashes home to where he was from, that too has caused me a few sleepless nights but soon he will be at rest. I hope 🤞
I think I’ll have more time to process when we’re back home but I’ve still got so much to do before I return to work. I’m hoping when I get back to work it will at least be a bit of normalcy and distraction.
i took sick leave then an unpaid break. I knew this day was coming, so had planned for this. I definitely couldn’t have returned to work yet and it will be 2 months soon since dh passed away 😢

Just wanted to check in really. A month since DH died. I'm not in a good place at all. I'm signed off work and have GP appointment next week.
I've been re-reading the posts as they have helped me to understand what happened. I can't shake the knowledge that he died in pain at the last because of something I did or didn't do.
I've signed up for bereavement therapy. I've not got much to add at the moment but I just wanted - again - to say how helpful this thread has been.

I must have whinged and then immediately fallen asleep. I really appreciate the replies. No one else understands. Fresh head for me today now fresh thinking. You've all given me a boost. I re-read the thread so sometimes too. I'm glad you are all still all on this and sharing. Keep going.

Hi everyone,

I’m new to the board - DDad has been diagnosed with a stage 4 oral cancer and we aren’t sure yet if they are able to operate - we hope to find out in the next few days. Just place marking really, saying hello, and hoping to find some solidarity with others going through similar with their loved ones. We are all a bit frightened and feeling rather helpless navigating the system and the rather complicated MDT appointments.

Just to say, I’m sorry if this is only for those with partners with cancers, I might not have found the right board.

Hello, @DaysofHoney Im sorry you find yourself here too.

@daffodilsandredwine It changes so fast when they’re like that unless your trained in end of life it would be hard to get it 100% right. We’re all so scared when it’s happening too.

I’m reading and wondering if I’m allowed to post, it’s my darling Dad who is dying of oesophageal cancer.
I’m sorry about your Dad. I’m a dentist so any questions please ask (although I may not know).

Hi @DaysofHoney and @HalfasleepChrisintheMorning. You asked if you could join.
I started this thread - well for me really - but it quickly morphed into a support group for all partners of people with cancer. We share a particular need and that's to say the unsayable in a safe place and to lean on others' understanding because they've been there too.
We say it's mainly partners because other people do pop in every now and again and some of us have other relatives with cancer as well (my Dad had oesophageal cancer).
It's a different kind of hell but I understand, it's still hell.

I don't feel like I own this thread anymore so what do others think?

I'm happy for it to be for anyone caring for someone with cancer, but I am also fairly new here myself so don't feel like my opinion should have a great deal of weight!
My DH has adenoid cystic carcinoma, which is wrapped around his oesophagus, not a cancer you'd normally find in that location, but presenting a lot like oesophageal cancer. His is also incurable but not yet terminal.

I'm happy for non partners to join in, but I do think that there's something to be said for focusing on carers. I appreciate that wider family need support too, but there are issues around being the one with the responsibility that this thread has been very helpful for.

@FormerlyPathologicallyHappy - thank you for this. Really thank you.

@DaysofHoney and @HalfasleepChrisintheMorning

And in answer to @Willowkins - my Dad also died of cancer but that was completely different from what I went through with my DH.

It was hell when Dad died - he was late getting treatment - horrible pain. But this thread isn't so much about the cancer as the effect on a partner.

The value of this thread to me - and I lurked for a year before posting - was that it was for partners.

We lived with our partners, in later stages cared for them 24 hours a day, (with varying degrees of professional help), whilst continuing to run a home, work, and deal with kids, (some people had very young kids).

It's you that goes to all the appointments. It's your home that becomes something other with the arrival of so many nurses and so much equipment and boxes of drugs everywhere and huge packets of incontinence pads and crates of special shakes. It's you who doesn't sleep, or go out as you used to. It's your person that you would normally rely on for fun, support, sex who becomes a "patient".

And it's this understanding that was of so much value to me when I watched my strong, very fit, walking, travelling, clever, (if difficult), husband become weaker and weaker until he weighed seven stone and couldn't sit himself up in bed.

The people on here understood that.

The problems I had when my dad died were different - they were horrible and I wanted to help but it wasn't the same and I needed a different type of support and answers to different questions.

I would say I agree with @daffodilsandredwine . My dad also had cancer and died and although devastating, the loss of my dh, the toll his caring took on me and the aftermath I am currently experiencing is 1000 times greater.
I am only 2 months in and everywhere I turn I am faced with sadness and reminders of the future I have lost. I’ve lost my husband, the majority of my family income, my future plans and dreams. It’s indescribable at the moment. I’m hoping in time I can start to come to terms with the future I’ll now not have, though right now it’s hard to imagine that day.
I'm not sure about others but I’m finding Insurance companies and all the associated paperwork overwhelming. There is so much to do, I’ve barely had a day since my dh passed away in March without an issue to resolve 😕.

@Timesnearlyup - I am so sorry to hear this. And I know exactly what you mean.

It's six weeks for me and I'm struggling with the admin. I'm lucky my kids are older - that makes a difference as they can help. It is overwhelming and sometimes I just don't know what to do. (His car - it's now not insured and illegal and I can't drive it as I have my own but I don't know where to start with selling it).

The grief is very different from when I lost my parents. I can't bear to move his glasses from the side table or his clothes from the wardrobe - and the future now looks very different, (but I don't think about that).

I went to the GP last week. Living on sandwiches and snacks and no sleep for so long while caring has not done me any favours - but I haven't got the will to change. (And I still get nightmares). I am so lucky to have friends and an understanding boss.

I am so sorry ... your post is so raw... And I doubt you can say this to many people - which is where this thread can help.

The trays of shakes! I feel like I shouldn't even have to know what they are. Had a classic partner-type happenstance last night actually. DS is ten and had raging fever, shakes, couldn't look at light etc so 111 advised to attend children's A&E (didn't even know there was one) then trying to find it within the hospital it turned out kids A&E is now the exact same unit/space which used to be the Critical Decision Unit where DP received the 'you've got cancer' chat five yrs sgo. FFS! Thankfully DP is well atm but on treatment next week so avoiding germs so didn't come with me so I haven't told him or anyone actually but I was sat in the waiting room with my son dozing on my lap about 9.30pm about 4meters away from the exact spot were told thinking is this like some cruel test the universe is sending to me?! DS is on the mend now anyway but had to get him checked.

@daffodilsandredwine I had lists in the beginning that I tried to plough through and did get some things done but I’m struggling now. I think I’m running out of energy. For me, I was lucky that dh had a Motorbility car and I was able to just hand it back. Sorry I can’t advise on your car situation. Can you drive it on your own policy?
We had life insurance with our mortgage but they said they wouldn’t pay without probate, so I had to apply. Unbelievably, it came through in 3 weeks, so again that was a straightforward one too. I’ve no idea how to transfer the house to my mane only so have messaged Land Registry today.
I won’t go into details but his work pension has turned into a nightmare situation & he should have had life cover from work too but I’m unable to reach anyone or get any information and I still have his work phone and computer but not sure what to do with them. I’m taking a break from work and couldn’t have done any work in the last few months, even if I tried. I’m imposing deadlines on myself to get things done but really just want to rest and do nothing 😢.
@BloodyMaryisthetruth glad your ds is on the road to recovery & can imagine the A&E visit was a shock. I hope your DP remains stable. I wish now we’d faced reality a bit more and got paperwork/passwords/ beneficiary nominations in order as everything has been so much harder for me by not talking about this when I had the chance.
Dh was in denial and I didn’t want to upset him. Hopefully, things will improve as time goes on. I do think you have to have been in this situation to really understand.

Ah yes the admin.
Along with telling everyone and organising the funeral all while your heart is breaking.
Like some here, I thought I'd plough through it and get it done.
But. The last financial thing took a year.
And. I'm still finding his stuff in stray corners.
Looking back (and it's been 5 years this week) I wish I'd spent less time ticking things off the list.
Here's a few handy tips in no particular order. I'm sure others will be along in a mo.
I've said this before but it's worth repeating, whoever you call, ask for the Bereavement Department. Those guys are helpful.
Look up about PTSD, especially if you're having flashbacks or panic attacks.
Check if you qualify for Bereavement Support Payment and if so, claim as soon as you can.

wrong thread

@Willowkins five years is a long time - and yet no time at all. The orange rug sounds wonderful. And doing things for yourself is good too.

I'm ashamed of how I have let myself go. At the moment I just don't have any energy. And it's a bit of a vicious circle. The less I care for myself the more exhausted I feel.

I'm hugely grateful for the immunotherapy because without that we'd not have had last year at all. We did have some good times and in some ways we got on better than we had ever got on and were closer knowing what we knew. So I'm grateful for the added nine or ten months we got from that. But the chemo was awful - and DH couldn't tolerate that.
@BloodyMaryisthetruth Good to hear DS is ok. He's still so young.

And I remember those hospital rooms and corridors - waiting for the next update. (I got a flashback too as DH was treated in the same hospital that my mother died in - and with a shock of recognition I walked past the door to the unit she was in..).

Hey @daffodilsandredwine. The thing is you've been putting yourself second for so long now, it's become a habit. Resting is not letting yourself go, it's giving you what you need. When you're ready, try introducing small changes. For me it would be drinking a glass of water instead of coffee; actually going to bed at a reasonable time; or writing stuff in my worry book. Even little things can make a difference.

It's just over two years since DH died. I am sitting in our lounge, in pretty much the same place his bed was when he died and I feel at peace here. Very soon though I am going to have to leave this house and move somewhere new. Part of me doesn't want to leave, a big part of me. I don't want to do this on my own, it feels scary and raw.

Hi @CopperSeahorses. I would find that scary too. I never really liked this house and have been wanting to move for years but I keep putting it off.

Was this your decision?

Kind of. I am a foster parent and the child I now foster has significant physical and medical needs, the house we are in is not a good fit for their needs we can't have hoists or any adaptions done (I rent privately) so it a case of either we both move or the they will need to move to a more suitable home without me and that's not what I want to happen. I love this little one and they are going to be with me for a good few years to come so move we will.

That's a lovely (in every sense of the word) thing to do.

Can you do this? Yes, you absolutely can.

Would you rather you didn't have to do this alone? Of course. That's a given.
Will you regret doing this? I don't think so.