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]

Hi @Hisredipad

Yes I am home! I was discharged from hospital just over three weeks ago but spent the first couple weeks at my sisters so I didn't have to come and live on my own straight away

I came home to my place last weekend. It's been quite hard physically, as I get out of breath very quickly (I have ICU Acquired Weakness which impacts Arms lacks and respiratory muscles - my arms are fine now, legs 90% better, but my lungs obviously need a lot more recovery), also still have 3rd° burns on my hip which the community nurse needs to come out and dress for me twice a week.

It's very strange to be home in our house. The last time I was living here was just a couple of weeks since my darling died. It feels like my grieving was put on hold while I was in hospital and at my sisters. I still feel the same way - that I don't want to live in a world where he doesn't exist, but I now know that there isn't an easy way out. Last time I had the good drugs, lots of them, and they still managed to wake me up. I am relieved that I didn't have the brain damage which they thought was quite likely, but not relieved that I was "found". But how can I explain to my sister who found me and save my life, that I didn't want to be saved...

Well actually, I think she knows that, I was quite clear in the note I left, but I still can't say the words out loud.

I'm trying to do the right thing, getting out for walks to improve my mobility, speaking to or seeing friends, but part of me just wants to shut the world out, eat biscuits and get drunk!

I'm still off work as even small things take me so long to do because I get out of breath and exhausted so quickly. I'm down to half pay now, but managed to get the bereavement benefit paid very quickly from the DWP, so that's helped.

Sorry @Hisredipad I post it too soon. I wanted to add that I'm Sorry to hear you're going through such a difficult time. So unfair for the DC to take it out on you.

@certainagedwoman im sorry your life is so difficult. I do hope in time that you will feel better in the same way that I hope I can move on from my current despair.

I too wouldn’t mind a drink, or possibly get rip roaringly drunk, I can’t stand the way alcohol makes me feel so I had a cup of tea instead.

I got on the scales this morning. I’ve dropped another 5lbs without even trying. It’s laughable really. Two years ago there was nothing I could do to budge two stone. In the last seven months I’ve lost it without even thinking.

I’ve had a visitor today which enabled me really to distance myself from all the crap but the thing that concerns me most is if said DC insists on things being a certain way the likelihood is I probably will have to sell up and move. If that becomes the case, the relationship will be irretrievable, and I’ll have lost sooo much more than just DC. I have adorable grandchildren too.

I am supposed to be working but am taking some time off to look after myself, I had a massage this afternoon but really what I want to do is to go to sleep for a week and wake up and find everything is OK.

let’s keep plugging on at trying to be OK and hopefully we can both report back that things are better soon. 💐💐💐

Jeez. All kicked off again. Arranging the internment of ashes. Just Me, the kids and a close relative of mine (who’s kicked off that my brother - the one I see once a year - is invited too) It’s supposed to be a very private moment for his nearest and dearest.

I can see them going no contact with me over this. And, they think they’ll use this and win. Im just at the six month mark, total rock bottom and floundering in grief and totally fed up that again there’s no respect for my wishes.

edited to say, PS, all the emotional crap from previous post got resolved and my future here is safe (just always seem to live life in a sodding drama).

@Hisredipad Are you the one arranging all this? Who invited your brother? Just tell him it's immediate family only and he's not to come. If he insists then change the arrangements and don't tell him. If that makes people who are being difficult and disrespectful go NC then it sounds to me as if that's a win.

If you're expecting them to suddenly turn round and start respecting your wishes I think you're ignoring all the evidence.

We had a similar situation when one of DH's family who thinks I am the devil incarnate invited herself to the ashes ceremony. Fortunately the rest of the family told her that there was no way that was happening and she was to stay away. The day still got taken over by those of the family who seemed to see it as a nice day out with a pub lunch, but it could have been worse.

You could consider taking a portion of the ashes and putting them somewhere that was special to the two of you in a private ceremony. I'm very glad I did this, but of course it won't work if you're not the one in control of the ashes in the first place. I seem to recall from your previous posts that this might be the case.

I'm glad you can stay and at least that much is sorted.

I don't know if I'm just getting older but I've developed a charming smile for all the energy gobblers. On the face of it, I'm being nice. Underneath I feel nothing but contempt.
Sending you strength for this new trial.

Thanks @Willowkins that’s kind of what I did today rang up basically extremely brightly said it’s not that he’s not invited but it’s always just been the nearest and dearest DB is not aware of this latest drama and I have been told it will not be brought up with him.

I’ve already decided that if it blows up I’ll cancel it and organise it at some other time in the future.

Pulling up a chair. DH has something neurological going on, which has robbed him of most of his strength and mobility since Easter. He's had an MRI now and is waiting for some clarity on that.

At the same time, bloods showed a slightly raised PSA and now he is in the process of being diagnosed with either locally advanced or advanced prostate cancer.

He is a shadow of the man he was even three months ago and is feeling awful. I can see him declining on at least a weekly basis.

@NorthernDancer so really sorry to hear about your dh’s possible diagnosis.

I don’t want to give false hope I do want to give you some hope. I am truly amazed at the medics today And, especially those that deal with cancer whilst it’s absolutely ann awful time you are going through at the moment. I hope that there will be a lot of hope for you and your dear DH.

But in the meantime, know that this is a lovely post with beautiful people who can offer comfort to you.

Sending you big virtual hugs

Hi @NorthernDancer. So sorry for the reason you've had to join our club but it's a place of safety. We get it.
It's been a while now since dearly departed MrW was diagnosed but I still remember the shock of hearing the word cancer for the very first time and also the weeks of almost holding my breath waiting for results. Actually, I've had to relearn how to breathe properly.
Please take time to be nice to yourself in the midst of all this.

Sorry to hear about your mum@SweetWilliam69
I mean this kindly but the experience we share on this thread is as partners of people with cancer, with all of its raw, twisted pain and loss.
I don't want to minimise your experience (many of us have had parents with cancer too) but we didn't really have much of a choice whether to stay with our partners.
I know there have been several threads for those whose parents have cancer so might you find a better answer on one of those?

I'm new here but not new to the topic.
DH has had cancer for over 6 years and it moved from stage 3 to stage 4 within 2 years.
Some days I feel overwhelmed by it, both the day to day stuff and longer term.
He's had a major op and recovered well, we had 2 years when we thought he was all clear but with a 60% chance of it coming back and it has.

I can hardly remember now the time when life was cancer-free.
He takes up to 9 meds a day mainly for the side effects of his treatments.
He's now on his 4th line of chemo and it's likely to be the last as he's worked his way through the others, some which didn't work at all, others which worked for 6 - 9 months. There is no cure, so it's all about giving him more time.

Before he was diagnosed he was super-fit with no risk factors. We were looking forward to retirement and doing loads of things, but that's all gone by the by.

At the moment I just feel emotionally exhausted with the routine of 3-monthly scans and waiting for the results. We're coming up to that now and I am bracing myself for 'It's stopped working' as that has been the pattern. Although it may not be that- maybe it is still working. I feel utterly terrified before each appt for this.

I just need to offload and ask if anyone else here is going through the same?

Not going through the same now but I well remember that all consuming schedule of treatment-hope-tests-results-disappointment. I'm not sure how I'd have coped with 6 years. It's not just the day to day care, it's the mental load and the emotional toll too - all while having to be the strong one. I'm not surprised you're exhausted.
This is a safe place to share.

@SylviaJames, I sort of know your pain, timings slightly different but stretches of better times interspersed with worrying moments at changes of chemo etc. the last two years were punishing and I wasn’t prepared for my DH going so quickly, we both thought he had a year, and he was gone within weeks. Although as awful as the past eight months have been since he passed I’m glad he’s pain free.

I made out I was jolly happy a lot, internally in utter turmoil but I think it was convincing, I dumped none essential stuff and made the most of good times, tried to work out how we could still do stuff even when it was hard, and found happiness where I could. He could drive ok so we’d go for a drive, take a flask, or find a cafe for a cuppa etc.

I took to going to the chiropractor every three weeks to sort my aching body, I had no time for exercise, and sitting on hard hospital chairs killed my hips. It made a difference not to have back ache as well as heart ache. I took vitamins but after DH passed moved to electrolytes, just half a tablet every day, it has helped my energy levels a lot. when DH was in hospital I bought lots of Cook frozen meals from the garden centre and had them with huge amounts of steamed vegetables which helped me through a lot of the tough days.

many years ago, when dealing with my own cancer diagnosis I had a few sessions of learning self hypnosis and found I used it again and again for relaxation purposes (and dialling down anxiety).

I truly hope that your DH has some good news. My DH had 12 years, and even the later years we had some good results with some drug changes.

It’s just occurred to me in the last couple of days I’m approaching a year on my own in my bed. It wasn’t that long from this date that DH first went into hospital and the rollercoaster that became my life started.

I have this morning read back over my posts and I found it reassuring to know that I am coming out the other side, albeit with a fair bit of struggle on the way.

it’s not been the best year for other reasons as well as DH‘s passing, but I’ve soldered on through many large problems and I do feel I’ve achieved so much that this morning I can sit here and think that DH would be proud of my achievements. I just really wish he were here to discuss it all with me.

I still can’t bear the idea of going to grief counselling but I’m absolutely sure I ought to. I’ve decided that if I still feel the way I do on his anniversary of passing, then I will make the effort and go.

I hope those of you here are all okay and Thank you for all your support during this past year. Being able to come back and read about how things really were has helped a lot. I would never have kept a diary and I would never have remembered it as I have written it here.

Morning @Hisredipad. These anniversaries are important reminders that we're still here, that in spite of the worst happening, we survived.
I was talking to my boss about my PTSD flaring up again and he said don't forget you're also still grieving and he's right (I have a very cool boss). I think sometimes people expect us to get over it but actually it can be too difficult to process such intense emotions all in one go.
My news is that I finally got round to sorting out the big box of paperwork and am getting ready to get rid of MrW's medical notes. It feels like that's a line I can very nearly almost draw under it.

Well done @Willowkins for sorting the paperwork. DH’s is very firmly in the back of my wardrobe (just in case any of the kids ask for it, who am I kidding?). I wish I had a cool boss, oh I am the boss, ha ha. My staff are very nice and give me lots of support, unlike some of the family who I think have just gone NC with me, now that’s a result!

Hi everyone, very sad to be joining this thread 😔 My DH was diagnosed with stage 4 bowel cancer in July this year after experiencing a total bowel blockage with no previous symptoms! We were in complete shock. In 3 months due to various delays with scans and biopsies he has only been able to have 2 sessions of chemotherapy and we have been told yesterday that his liver is riddled and there is nothing more that they can do for him and have given him approx 3 months. Having seen how quickly his cancer has progressed I don’t even think we will have this length of time. We have a six year old daughter. My heart is breaking for him having to go through all this, and also for us as a family. He is only 45. Why is life so cruel.

Oh I am so sorry you find yourself here @missinghimalready. It's mind numbing when you here that news isn't it, have you got hospice involvement?

I’m so sorry to hear this. My lovely DH had bowel cancer which spread to his liver quite quickly too. Unfortunately, dealing with advanced cancer in the liver in the last few months or weeks can be very difficult. Please DM me if you want to chat.

Life is indeed very cruel. We are all witness to that. I’m so so sorry for you xx

@CopperSeahorses thank you, no not yet we’re still in hospital and waiting for the palliative care team to come and see us to make a plan. He’s been very poorly today which has come on quite suddenly, not sure if it is the cancer or he’s caught a tummy bug.

@certainagedwomanthat’s very kind thank you. Seeing him deteriorate so quickly and turning yellow is awful. I can’t bear to think what might be ahead for him in the coming weeks x

So sorry @missinghimalready . Lean on the palliative care team, they're excellent and have access to all sorts of things you don't even know you're going to need. Sending strength and courage.

Obviously everyone is different, but if you want to know a little bit more about what you might expect, my DH got more and more “confused“ as the time went by and the toxins that his liver should be expelling from the body went to his brain. But he was mostly asleep as he was on strong opioids and just awake for a few hours every day. He wasn’t generally distressed, just well the best way I can describe it was he was like a drunk toddler at times, silly not really making sense. He wasn’t eating much, mostly fruit, yoghurts that kind of thing really, whatever he fancied - he announced at 10 pm one February evening that he wanted ice cream! He would come in and out of the confusion.

He got weaker and weaker and in the end we had to get a hospital bed at home as it was the only way we could Safely get him to drink or take tablets. The day before he died, I couldn't really understand what he was saying, but then he seemed to push through the confusion and spent around an hour saying my name and telling me that he loved me, so I knew he was inside there all the time. When he died, he simply stopped breathing in his sleep. It was very peaceful.

Sorry, I hope you don’t find this too distressing. It’s just I had no idea what to expect with Clem, and I thought maybe it might help.

I really feel for you, it’s so awful. sending you huge hugs

Thank you @MontyDonsBlueScarf 💛