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]

My dh was in denial until the last few weeks. It was his coping mechanism. He stayed positive until there was no hope left.
well done for getting the building company out so soon.
Hope you get some rest this weekend.

Denial is really common, my DH too ‘ignored’ it.

our hospice where great, they really helped us and helped get DH pain under control. Have you asked for carers to come in and help with some of the stuff ?

my friends dad is on pallative care and bed bound downstairs in a hospital bed, her mum has had a bed settee put in his room so she can sleep in there with him. My DH came home at the end in a hospital bed, I slept on the settee at the side of him

Seriously @Jaffapaffa I'd at least go to the monthly club. Is there any way you can let DSIL in, make her a cuppa and then just leave her and DH to entertain each other? Being away from the situation will give you time to process and you're going to need to look after yourself going forward.

@Jaffapaffa i came on to say the same as Willlowkins.

First rule of caring is that you look after yourself. If you don’t look after yourself, you can’t look after others.

Ring your sister-in-law, let her know you’ll be out and where things are. Your DH may be grateful for the time alone with her.

You had a long way ahead of you And things that you will need to navigate may not be totally clear at the moment. Organisations like your local hospice will be there to support you at home. This was one of the things I was most surprised about when I came across the services they offered. I was a lot on my knees when I got them involved with DH and at that time I found out they had removed the word hospice from their name as they wanted to a service for people with serious illnesses and wanted to keep them at home with their loved ones while supporting their needs medically and practically with things like beds, et cetera.

they also were supportive of me and at one point encouraged DH to go in for a couple of nights so that I could get some sleep. They also organised the carers that came in towards the end.

Thank you again for all the replies and suggestions.

I went out yesterday morning for 2 hours, and it was lovely to feel some sort of normality again.

DSIL came for 6 hours, and we chatted when DH had a nap. She is very positive about the whole thing, which was very helpful.

DH continues to make amazing progress with his prosthetic leg - 8;weeks after having his amputation, he now has a walking frame and can shuffle about slowly downstairs. But it's heartbreaking to see how well he's doing while knowing that at the same time his lungs will let him down.

First oncology appointment tomorrow, and I already feel sick at the thought of it.

DH has been up and down - moments of utter happiness and then plunging right down.

He told me yesterday that he can't see properly - he can't read apparently - and wants an optician appointment making, which of course I can do. I've tried to arrange a Specsavers home visit, but no luck so far - the amputation means it's almost impossible to get out of the house yet.

I've assured him that his sight problems are probably more of a general deterioration (last appointment was in 2022 😕) so no real need to worry - but I will mention it at the oncology appointment tomorrow as well.

But deep down I do worry that this is a symptom that he is getting more ill.

@Jaffapaffa would buying him some general reading glasses help in the short term?

You can pick them up in Boots and lots of other shops often near the sunglasses. If he has a prescription already then you can go for something a bit stronger. I just had a quick look and they seem to be called ready readers generally. Buy a couple pairs and return what isn’t any good.

Thinking of you both. 💐💐💐

Thank you for the suggestion - I'm going to see if I can pick up a pair this afternoon.

Sometimes my head is so full that I miss the most obvious solution! It's feels as if my brain is simultaneously melting and exploding at times.

DSis and DBIL are coming over on Saturday with a bigger car to take us to the opticians, which is unbelievably kind of them - it will be a 4 hour round trip.
DSis is a physio and works with amputees - she is confident that between us we can make it work 🤞.

She did say that it would be almost impossible to get DH comfortably into.my small hatchback!

Please mention the reading at the oncology appointment, some of the lung cancer drugs can speed up cataracts.

The first oncology appointment came and went.

Lots of information which I wrote down, but can't face reading yet.

DH has a choice of chemo for immunotherapy - neither will give him more than a couple of months.

But nothing can start until he is more mobile, so he's diligently doing all his physio exercises.
I'm really hoping he can get to the required stage in the next 3 weeks.

And in the meantime the washing machine has broken. I've cleaned the filter 6 times now, but still no luck.

I suspect it might be old age, and that a new one is required.

And as I seem to be endlessly washing bed linen and clothing for DH, perhaps I need a washer/dryer, at least for the next year or so.

I know it's only a tiny thing, but it suddenly seems like the most difficult decision of the day!

Work have been very supportive, but it's really not a great range of topics to be teaching at the moment.

Yesterday was an analysis of the poem 'Do not Stand at My Grave and Weep' for RE. Quite hard to get through the whole hour without a wobble, but I'm very proud that I managed it. Might have had to stand at the back of the room a couple of times, but I got through it.

You've got so much going on @Jaffapaffa but strangely it's the washing machine breaking down that got me. When you're going through a life changing and emotional event, the most mundane problem can seem like a wall that's just too huge to climb. Have you got help in real life?

Thank you - yes, my sister has been amazing, and I couldn't have got as far as we have without her help.

Between us, and DBIL, we managed to get DH to the optician, who confirmed that the sight problems just mean a new lens prescription. DH is delighted, and has been in a much more positive mood. Especially as Dsis also took him to Gregg's for a sausage roll (or 2...).

DSis is coming over again next weekend to help me sort out a new washing machine - of course I can do it myself, but I'm gradually getting better at just letting others sort out admin.

That's good to know@Jaffapaffa.There's plenty of life admin to go round that's for sure

My husband is now in his final days. He’s having a syringe driver fitted today so likely will be unresponsive from that point due to the morphine. I’ve been staying with him in hospital constantly. The influx of visitors will arrive soon. Selfishly I just want him to myself for the short time he has left but also I hope he sees how loved he is with everyone wanting to be with him.

I'm so sorry it's come to this @missinghimalready. Those quiet times when you can just be with him are precious. Plus I remember you have a small child. Don't forget to breathe in the midst of all this

Thank you @Willowkins today he managed to hug me back and kiss my head and it was the best feeling ever. Treasuring these last moments. Yes we do, thank you for remembering. He said goodbye to her yesterday, absolutely heartbreaking.

I've been thinking about you.
Hope the quiet times are happening xx

We were told yesterday that DH is probably not going to be well enough to have an alternative chemotherapy after the first one failed. He was offered and accepted a five day course of whole brain radiotherapy for the brain metastases but they have severely affected his mobility and he has lost muscle due to prolonged steroid treatment. When pressed the doctor said we should consider his care as moving to end of life now.

We are having 4 carer visits a day and the district nurses are trying to get us overnight care too and said we should be expecting him to move to being nursed in bed. He fell at the weekend and luckily our DS has been here and helped me get him up, but the nurses and the oncologist are clear it is no longer safe for me to care for him alone.

I am shocked how fast things have changed in the last few weeks, particularly since a hospital admission for an infection last month.

Thoughts with all on this awful journey

Thank you @Jaffapaffa🤍 the end is near. He’s getting frustrated at not being able to communicate well, getting confused and not being able to hold and lift things properly. I’m struggling with this and how I know it must be making him feel. They are going to reposition him in the bed so that I can lie with him this afternoon and I can’t wait. He still will kiss me back, squeeze my hand and whisper I love you. I’m treasuring each of these moments when they happen. The hospital staff here are absolutely incredible, I am eternally grateful for their care.

@EvenstarI’m so sorry to read your news, you must be utterly distraught. If it helps at all, the hospital my DH is in have been absolutely amazing, they are so attentive and constantly making sure he is comfortable. They are also very supportive of me and have been a great comfort to the point I am going to miss them! They also have open visiting at this stage and have allowed me to stay with him round the clock. Sending hugs

Thank you @missinghimalready my thoughts are with you and I am glad you are receiving such good care.

We hope DH will be able to stay at home, but we will have to see how things go with the extra carers.

@Evenstar I’ve been watching this thread but haven’t had the energy to post. Your situation resonated with me.
My dh died just over 2 years ago now. He fought cancer for 7 years and carried on fighting until the end. The tumours spread to his skull and they gave him whole brain radiation. He deteriorated rapidly after that. It was truly awful.
He was bed bound for the last 6 weeks. Eventually unable to see properly, speak, swallow or even turn in the bed. It’s a truly horrific treatment with no positive outcomes. I’m still not sure why they did it.
I got overnight care from the continuing heath care fund arranged by the Hospice as he wasn’t safe to be left and he kept falling. He wanted to stay at home. It was extremely difficult at the time but I am now glad he got his wish to stay home and that does give me comfort.
I feel lost and alone. Friends have their own families and don’t really understand how lonely it is losing your partner and future plans.
Sorry to be so bleak. My only advice is to make the most of every second you have left and look after yourself too, if you can. My thoughts are with you.

Thank you @Timesnearlyup, there were no other options left for the brain metastases and DH wanted to try the radiotherapy. I know the effects won’t be clear for some time, I had grave reservations about it and hope not to be proved right. I felt I had to support him in his choice as obviously it is his body and illness.