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]

We have both been widowed previously and have five adult children and a wonderful son in law who has already lost both his own parents 😔

@Evenstar I'm so sorry, that's really tough and it's worse at this time of year. Can you get an urgent referral to the palliative care team so that there's a bit more support for you over the holidays should you need it?

@Hisredipad that's seriously shitty and totally unfair. If it wasn't raining so much I'd go out and lick a few trees on your behalf.

Sending love and strength to you both.

@MontyDonsBlueScarf we have been referred, but the hospice haven’t got any availability, we have been given a 24 hour number there for any medical issues out of hours as we can’t access that at the hospital until the chemotherapy starts. Everyone has been very kind and we are in contact with MacMillan at the hospital and the specialist nurses, just doesn’t seem to be much in the way of support yet.

Thanks all xxx

@Evenstar so sorry you’re having such a hard time. Vent away. My DH was admitted via a@e towards the then unknown end of his life and the oncology ward were amazing. Our hospice team supported me at home either side of that hospital stay. It may well be worth a call to them to see if they can help you at home xxxx

I had that 24 hour number with the hospice. I’d suggest using it as it kicked off a lot of help for me

We are managing OK at the moment at home, DH is still able to wash and dress etc, it’s the emotional side and the counselling we could do with accessing, but I will definitely ring if we need to, I was so glad to have the number with the holidays coming up.

Our hospice had a dedicated family support team, they were brilliant. If that's what you need then give them a call. They completely understand that it's not just about the person who's ill. And as @Hisredipad suggests there's a lot of help out there that you don't even know exits, some of it is services, some of it is equipment that you're unlikely to ask for because you've never come across it. Seriously, talk to them before you think you need them, it will take a lot of the worry away.

My DH had mets in his brain, has he had a scan to see if they can be zapped, he had gamma knife treatment which got rid of them. He loved being on steroids ! They stopped everything working, didn’t like it when he had to reduce them down. Our hospice was great, I couldn’t access the groups as still under the end of Covid rules but everything else they where great for.

@notapizzaeater they will consider radiotherapy after seeing the response to chemotherapy, it is more difficult as it is spread throughout the brain they have told us.

@notapizzaeater just wanted to say thank you, we have realised that gamma knife treatment hasn’t been mentioned at all, so I am going to phone the specialist nurses in the morning to ask about that.

Two days ago, not really with my thinking cap on arranged to go to lunch with a friend not realising it would be the day DH passed away a year ago.

it will be later today, if I ever get some sleep, wondering if I’ve mucked up or should I go anyway.

Going out to lunch doesn't mean you miss him any less, and it doesn't take away from the memories of everything you had and went through together. Go anyway, sometimes distraction is a good thing

Hello - may I join you?

I'm absolutely devastated emotionally after an appointment with DH last Friday where we were told that he has late stage 3 - almost stage 4 - lung cancer and that treatment will be palliative at this stage.

He has no symptoms, is in no pain - I feel as though my world has been upended.

He had a blood clot over Christmas (which we now know was caused by the cancer) and this cut off circulation to his lower leg, which was amputated on 2nd Jan.

He is doing so well with his prothesis, and making so many plans for the future - but this unexpected diagnosis has completely floored me.

@Jaffapaffa so sorry or hear what you’re going through. How devastating to have a leg amputated and then get such shocking news. Your husband sounds amazing. So strong to be positive after something like that.
There isn’t a lot I can say, you must be in shock. My only advice would be make the most of every day while you still have your dh with you and he is not really unwell.
It’s coming up to the 2nd anniversary of my dh’s death and I still feel so sad and lonely, An outsider looking in would probably say I’m doing well. I’ve done a lot in the past year but it’s mainly been a distraction tactic.
Dh’s last few months were very traumatic. I wish they were different but they weren’t.
if you’re able, especially with the weather starting to improve. Try and do something nice whenever you can, even if just going for a coffee/ drive somewhere nice.
Please also check your dh has a will and you’re named on all bills etc. it will make things easier.
thinking of you and sending positive thoughts x

Hello @Jaffapaffa. Sorry to hear of your troubles. I hope this is OK to drop in, I sometimes read this thread as I am the one with cancer and my partner helps me.... I noticed your shock about the diagnosis and that treatment would be palliative. In case it helps awareness, I was also told this in 2019 when my cancer moved to stage 4 (melanoma). The use of the word palliative really freaked me out as I thought it meant more like pain relief etc only. However I believe they use this term with stage 4 as it cannot be 'cured ' (as it has spread and can spread in the blood etc) so treatment can't be curative I.e. get rid of it. I have been on immunotherapy since then, which shrunk my tumours a lot, I also had radiotherapy on spinal tumours, and has kept me alive since, and my quality of life is pretty good - and this is palliative treatment. Of course I don't know the detail of your DH issues but just wanted to say this. Sending very warm wishes to you both.

I read your message @Jaffapaffa and it reminded me of when we were first told of my DH's Stage 4 cancer diagnosis. The shock was enormous - it really did feel like the walls were closing in.
It'll take a little time to process. In the meantime this thread is a safe space to share whatever and with no judgement.

@Jaffapaffa so really sorry to hear this news. My DH was basically in a palliative care type of treatment for a good two years and played golf albeit with a buggy for a lot of of it.

It’s good to know that your DH is not in any pain and what a brave person he must be living life as best as he can.

I know palliative care for each patient is very different but I’ve seen really positive palliative care where the patient has had it long-term so I hope that your DH will have long-term pain-free palliative care and that you will both in time find a life that you can live together. But at the same time, know you can come in here and shout and scream as much as you want because there will be times when you will probably want to do that. Sending you lots of big virtual hugs. Xxxx

I posted earlier whilst out and it’s not come up. @Jaffapaffa my DH had lung cancer, the non smokers one - Ncslc - his initial treatment was just a tablet a day, we had some side effects but life pretty much carried on as normal.

Thank you so much for those kind words and support - I cannot tell you how much it helps to know that I'm not alone.
At the moment it's hard to carry on with life 'as usual ' as DH can't leave the house. He's physically well enough, but none of the doors are wide enough to get his chair through. Building work is booked for next week to put in a new door and a ramp, which will give us more options to spend time together.
The local council have said they will come out and assess what he needs - but I understand that there's a long waiting list, so I've just gone ahead and sorted out things myself. We just don't have time to wait 6 months before he can get out and about!

I work full-time (teacher) and am already finding it harder than I expected to juggle caring and working. DH is sleeping downstairs in a single bed in our dining room - we thought it would only be for a few months until he regained mobility, but we will have to rethink this now.
He says he is lonely and misses companionship at night - but he needs a lot of space to manoeuvre about. We also don't have a downstairs toilet, so commode and bottle emptying falls on me, as well as washing arrangements.

I spoke to HR yesterday, who were very supportive - DH works at the same school so that does make communication easier.

I haven't told any of our other colleagues yet. At the moment I can still have 2 parallel lives, where work carries on as normal, but home has become a strange place with a completely changed routine - and now many more changes to come.

@Jaffapaffa It sounds like so much has happened, so quickly.
you do also need support for yourself. Teaching full time and also supporting dh sounds emotionally draining.
i hope you can make changes to your home and have some quality time in the months ahead. Is your dh able to get medical retirement?
You seem to be coping amazingly. Do try and look after yourself too. Though I know that’s easier said than done. Do keep posting. Do you have any family or friends nearby who can help?

@Jaffapaffa have you looked into support From from your local hospice?
Mine do a service where they look after people in their homes more than they do actually at the centre

DH came across them for care as they did a pain Management care service we did with them for awhile. This doesn’t have to be end of life care assistance

They were really helpful when I needed bed for DH it arrived within three hours

If I were to do anything different I would have brought a single bed down for myself and placed it alongside DH Hospital bed that we had in our lounge. He wasn’t home that long and I slept on a sunbed beside him but there was room for another bed. Hugs

edited to say that whilst I did sleep upstairs for a few nights, I had a baby monitor. We fortunately had in the house that I used with DH so he could talk to me if he needed me in the night.

Baby monitor worked well for us. Also creative use of Alexa, he could get it to call me, remind about meds etc.

The building company phoned today to say that they were going to delay work until 16th March - a fortnight later than planned.

I cried.

And told them that I needed the work doing ASAP, because DH has a prognosis of 6-12 months, so I need to be able to take him out and about as much as possible.

We don't have a spare fortnight.

They're starting on the 5th now.

The prognosis is what we were told as a rough guideline, with the caveat that the oncologist would have a better idea.

It's still far too short. I thought we would have years together - I had planned to retire in a few years so that we could do things together.

I never ever imagined that anything like this would happen.

DH is in denial. He won't admit that he is ill.

He assured me that he had told his sister - his only other family member. She's had cancer twice, and he wanted to chat about chemo to her

But she has contacted me to find out what is going on - he has told her that he's fine, and it will all be cured.

I have told her how poorly he is, and she is understandably distraught. She is coming to visit at the weekend, which will be lovely, but at the same time, I just wanted peace and quiet for a day, so that I could get chores done.
I had optimistically thought I could go to a monthly club meeting on Saturday morning, and then to the launderette to tackle the mountain of washing - but now I will be entertaining instead.