Storm Part 4 (for partners of people with cancer)

[Willowkins]

New thread as the old one filled up. Part 3 can be found at https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3?page=1

It’s very touching to receive flowers, but they do create work at a time when there is already so much to do. When my first husband died the house was filled with flowers, but sadly I now find the smell of lilies very upsetting due to that memory.

I couldn’t eat my dinner at the dining room table because I filled the whole thing with condolence cards. They’re in a big bag under my bed at the moment. I’m planning on reading them soon then I’m going to set them a light and put the ashes on the grave because I can’t bear to throw them away.

if I was to tell anybody else that they would think I was absolutely bonkers 💐

As we drove into the hospital this morning, I thought 'DH will probably die here' 💔

I hadn't even thought about receiving flowers and cards. We're British but currently live overseas and have no family here, and essentially no postal service. DH works remotely so doesn't even have colleagues here. He's told me to get him cremated here and not faff about repatriating his remains to the UK to be buried somewhere I'll never go. So, not even a funeral.

So very sorry that you’re having to endure this.
I’m not sure where in the world you are but here the UK we can get ashes made into jewellery and I’m wondering if that may be of some help to you if you can do it wherever you may be and then at least you’ll always have something of him with you

Thinking of you at this difficult time 💐💐💐

That's a tough insight@thornbury. Every new situation hits hard at this point - and there are so many of them.
My DH's ashes are buried in the little church garden he loved because that's what he wanted but I rarely visit even though it's just a couple of miles away. I much preferred it when he was on top of the bookcase so I put his photo there instead.

I sneak a small handle full of DH ashes onto planes, cruises etc - I leave a small amount of him on the beaches we visit, DH loved the sun, holidays and beaches.

I’ve a scatter tube which is about the size of a can of fizzy drink. The undertakers made up two along with the casket for the ashes. One DC took one back to their country and I have the other to scatter in a place that DH really loved in the UK that we’d been going to for over 50 years, but my plan is to keep a little bit of it.

I've finally faced up to having to plan DH's funeral, so that's all set up for a fortnight's time.

I just can't believe that he's gone. Or that I can feel this way and still exist.

A friend who lost a spouse 9 years ago told me it took her 5 years to start to feel normal again - I can't even comprehend how that must be.

@Jaffapaffa with the greatest of respect your friend should never have said what she said. I had something similar said to me and it really threw me.

At the moment you will be at the lowest of your lows and you have so much to deal with that that it’s exceptionally hard to understand how you will ever come out the other side

But I can assure you this total hole that you feel yourself currently in will get better. None of us can advise you when or how it will get better but it will lesson. Today is the 16th month since DH passed from this world and I’m having a bit of a struggle day I must admit, but it’s nowhere near as difficult as it was at the beginning.💐💐💐

The thing is we're all different aren't we. And grief is like spaghetti, there's no steady progress through the stages just different perspectives. Sometimes we feel better, some days it really hits us. Counselling can help some people, sometimes it's medication and sometimes it's time. Sometimes it's too hard and we bury the feelings just to have them pop back up years later. Overall the trend is towards hope and healing. All this is normal.
Just now, you've done well to organise the funeral and that's huge. Sending you a virtual pat on the back and unmumsnet-y hugs.

My DH has been given a syringe driver today, have also had a difficult time with one of his family who is staying here. It’s a very bad day indeed 😔

This happened to me as well, so I am sending you a virtual hug
It was all so overwhelming, and when they fitted my DH with the syringe driver, it was in some ways a relief - he was not suffering. But at the amw time he lost all ability to communicate, which made me so sad.
I hope the family member realises that this is not the time or the place for any disputes or arguing.

Hello, I’ve been checking this thread since my DH was diagnosed with stage 4 cancer in March. He was in hospital since the end of March due to complications with his other medical condition but I was coping ok, distracting myself with work and childcare, popping in to see him at the hospital every other day. He seemed fine and coping well despite everything. When I saw him on Tuesday afternoon, he seemed a bit fed up as he suffered a bout of diarrhea after another course of chemotherapy but otherwise, he was still talking, seemed as ok as stage 4 cancer patient can be. But then, I got a call from the hospital early Wednesday morning and by mid morning, he was gone. I just cannot believe how he deteriorated so rapidly and I’m in shock. I just cannot stop crying and so sad. I also feel guilty that I didn’t visit him everyday. I was feeling stupidly positive and thought he’d beat cancer and be back home soon.
I need to be strong for our children but I am struggling without him.

@Evenstar my DH never had a syringe driver but he did have a swarm of nurses at the hospice giving him all the drugs he needed to keep him comfortable.
I'm cross on your behalf with his family member. In my experience, people behave badly around cancer. Some of them live in a bubble and some need to be in control.
You however have every right to a peaceful life in your own home and it's hard enough going through this without extra.

@Anonynoname I'm so sorry to hear this It all seems to have happened very quickly.
Please don't beat yourself up. You had hope and you coped and that's pretty much true of everyone on here.
There'll be a time when the all the arrangements are out of the way, and the admin fades into the distant past, and you can just be, but for now be kind to yourself.

@Anonynoname so sorry, sending you strength. However long we have, its not enough.

@Evenstar hope your DH is comfortable.

We've had another rollercoaster week. Cycle 2 of chemo was scheduled for Mon, but oncologist told us the genetic testing results had come back from US and made a confusing situation even more so. It remains inconclusive (so still metastatic cancer with unknown primary) and Dr wanted to hold off on chemo until MDT met the next day, but in fact they decided to stay with original plan. So now we are a week behind already as the next infusion will be this coming Monday. With hair disappearing rapidly and a widespread post-steroids rash, poor DH is really not looking how he wants right now. The pain is now in both hips, but has eased in the spine thanks to radiotherapy.

@Anonynoname I am so sorry to hear about your loss, and am sending you a massive hug and virtual support.

My DH also died very suddenly - 4 weeks ago today - in hospital from a stroke caused by his stage 4 cancer. The cancer was picked up by chance, and it was formally confirmed at the start of March.

Like you, I thought he was going to come home - and then he suddenly deteriorated. I was (and still am) distraught.

You will probably go over and over various scenarios - please please be kind to yourself.
You did the very best that you could at the time. I suspect we all wish that we had done things differently with the benefit of hindsight - I certainly do - but it won't change the final dreadful outcome.

Take time and accept as much help as you can.

The grief is unbearable at times - be kind to yourself, and I will be thinking of you xx

@Anonynoname ((hugs))

this journey isn’t linear nor does it follow any rules - my DH was told he had 3 months, within a couple days he was in a coma and died within a week. Take care of yourself, accept help from others x

DH passed away peacefully this evening at home as he wished. We are heartbroken but relieved that this awful journey is over for him and he is at rest

@Evenstar I am so sorry to hear that. Hope you are okay, and I'm thinking of you and your family xx

I'm so sorry to hear this @Evenstar
There's a moment of quiet when it's all over and I think that's when we realise the cost. Not just losing our partner although that's bad enough; but also in the way our care for them (and the family) became so all consuming.
I'm wishing you peace at this awful time.

So sorry for your loss @Evenstar 💐💐💐

Feel lost today @Willowkins woke up at the time I would normally have let the night carer out. I read somewhere the other day that for each month of caregiving you need a month to decompress and stop jumping when the phone rings etc I think it seems something separate to the grief.

@Evenstar i definitely spent several weeks after DH passed doing very little physically. I can’t remember how long it took me to feel physically better but I do remember it being quite some time. Probably months.