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]

Thank you, I’m having some time to myself tonight after constant visitors over the past two weeks in hospital before I tell DD6 tomorrow (she’s as heeled Nans tonight). I am finding myself hyperventilating a bit so will practise the deep breathing x

I'm so sorry to hear this @missinghimalready
I remember clearly, thinking: who even am I, if I'm not MrW's wife? It takes a long moment but ultimately, we are all our own selves.
Wishing you peaceful and quiet moments this evening.

Thank you @Willowkins🤍 I’ve already gone to message him something 3 times then remembered 😣 I’ve just taken a sleeping tablet so hopefully that will work and give me some reprieve tonight.

DH remains in the Hyper Acute Stroke unit, and so his chemo is paused for now.

I just wish I knew what will happen next - I know that the medical staff also don't really know how he will get on, but I am so frustrated.

I had so many plans for the next few months, so that we could have some lovely times together, and I am heartbroken at the thought that he is going to spend this time trapped in a bed, unable to speak or move, and getting steadily weaker.

Apparently the plan is to move him to another ward, and then to a residential home for a couple of months.

I could live with all that - but the terminal cancer diagnosis is ticking away in my head all the time.

I cannot believe how bad this situation is, and I hope it's okay to vent here, because I can't bear any more talk of 'Stay strong for DH'.
I'm doing my best. I don't know what more I can do.

I'm pretty certain that DH won't like it in the residential home (I will of course tell him how marvellous it all is) - it's communal dining for a start off - he's not a very sociable person at the best of times.

@Jaffapaffa vent away. So very sorry to hear that life is phenomenally difficult. Don’t know what to say really but what I suggest you do is try and use the time to boost your own health, even if it’s only a decent nights sleep so you’re able to hit the deck running when it’s all change (and perhaps he’s coming home). 💐💐💐

DH’s wedding ring fell off this morning, I have put it away in my jewellery box 😔

My cat has been missing since Sunday evening as well. I would ask what else can go wrong but I don’t think I should tempt fate.

@Jaffapaffa sorry to hear about your DH

@Jaffapaffahappy to listen to you venting, you absolutely will need to I’m sure. That must be so scary, particularly the not knowing and the frustration and anger so upsetting. Are the medical staff being supportive of you and looking after you when you’re with your DH? Sending you a big hug

@Evenstar😞 have you managed to get extra carers to help you at home now? I hope your cat returns very soon 🤞🏻

Stay strong. Yes that's a good one - as if we have a choice.
Brittle is what it really feels like. What happened to the soft, living breathing person? Petrified in every sense of the word.
Every decision is made out of a dwindling list of choices.
We can't take this away. I wish we could. But we are here.

Waiting for an ambulance for DH, hoping it will be OK but they want to rule out a DVT 😩 We should have been at the James concert in Manchester tonight, had to sell the tickets for obvious reasons, we bought them before all this happened and had so looked forward to it ☹️

We had just got night carers sorted @missinghimalready, cat still missing. Thinking of you and hoping you are doing OK

((Hugs)) Hope DH is ok. It’s shit missing events and memories x

@Evenstar I hope everything is as well as it can be.

Missing planned events is just another reminder of how much none of us want to living life this way.

Still on a trolley in A and E at the moment we lost the cubicle in the middle of the night and were put in an area in front of an outside door and we have now been put in a corridor. Still not seen a doctor.

@Evenstar that all sounds really awful and I really feel for you both.

I hope he gets seen soon

The staff are really doing their best, they have encouraged me to make a formal complaint. It doesn’t change what is going on here and now 😔 I did manage to get his pad changed again and they repositioned him, he is almost completely unable to move himself and has a pressure relieving mattress at home to protect his skin from breaking down. I have been awake for over 28 hours now

That's truly awful @Evenstar
Sending you a handhold while you navigate this

@Jaffapaffa my DH was in the same position when he had his stroke except all offers of chemo or further treatment were withdrawn so I refused the rehab centre. I knew DH would've hated it, he'd always said "Please don't put me in a home", it was very close to Christmas and, deep down, I knew it was going to be our last one so, after a big bit of a fight he came home with a therapy package in place. It wasn't as much therapy as the rehabilitation centre could offer but it was good enough. Please vent away, those decisions are hard and no-one really gets it until they have been there.

@Evenstar I really hope he gets seen soon and you can get some sleep

Finally got home about an hour ago have now been awake for nearly 40 hours. Have left my DD taking tonight’s shift. He was still on a trolley in the corridor when I left, but they were going to try to find him a pressure relieving mattress and a lovely young nurse came to change and turn him almost as soon as she started her shift. DD is on it and studied Health and Social Care when she was at college so knowledgeable and sensible.

The only doctor we have seen is a first year resident doctor, who thought we had done the right thing to come in to rule DVT, but then suggested we should avoid DH being admitted as he isn’t well enough to be on a trolley for 24 hours in A and E (funnily enough I had noticed that) by having a plan with the GP. I asked what kind of plan that would be on a Saturday when the surgery was closed and the District Nurses and carers told us to ring 111 and the doctors called the ambulance, they tried to send us via the Medical Admissions Unit, but they wouldn’t answer the phone. They hope to find him a bed tonight and start precautionary medication, though I would suggest the time for that course of action was last night.

He “should” have an ultrasound scan tomorrow, apparently they are not available at weekends as it’s not an emergency 🙄

Last month with an admission for suspected sepsis whilst he was on chemo he didn’t see a doctor or receive antibiotics for around 5 hours even though the chemo helpline had sent the ambulance. Our local ambulances are plastered with garish messaging about thinking if it could be sepsis.

When I finally left tonight there were around 10 ambulances waiting to unload and the air ambulance was landing and I overheard the nurses saying there were over 20 trolleys in the corridors.

Thanks for everyone’s support 💐

I’ve just seen your thread in the other bit. When we managed to get my DH home in a coma it was a private ambulance, think it was St John’s but not sure, the hospital arranged this. At the time I wanted to follow in my car which was at the hospital but they insisted I went in the ambulance with them. With hindsight it was in case he didn’t make it home. We got 2 days at home with him albeit he was in a coma so totally out of it but it helped DS to see him and say goodbye. He desperately didn’t want to die in hospital or hospice so the hospital and I moved heaven and hell to get him home - I’d do it all again if needed.

Thank you @notapizzaeater it’s not as imminent as that for DH as far as we know, but his lack of mobility rules out any other transport now. I am so sorry you went through that 💐

Just to update on here DH has decided that he will have no further hospital admissions for any reason. We had a telephone appointment today with our oncologist and decided we would say goodbye and leave it that we will contact them if we need anything. He is not well enough for chemo and unless that changes (very unlikely) there is no more on offer.

Saying goodbye and thanking her and the specialist nursing team was harder than I expected. We feel a sense of peace with these decisions, but I suppose we now know that we are really approaching end of life.

I have been reading your other post. I’m so sorry you have had such a dreadful time and that your DH has spent unnecessary time suffering on top of the suffering He already has. It really isn’t acceptable.

I’m hoping that in coming days that you find yourself feeling better and he does too.

I can’t remember if you’re in touch with the hospice, but if not, I’d really strongly recommend that you speak to them. Our local hospice here in North Kent works highly towards keeping people at home and have teams of the relevant carers and professional professionals in order to do that. I can’t recommend them enough they were brilliant at supporting both DH and myself. 💐💐💐