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]

@2Old2Tango Dh is on fortisip and protein shakes (Skandishake on prescription but apparently any protein shake will do). I water them down with full fat milk so they can be supper through a straw. It takes him a day to consume one of each. Anything else (other than water) is regurgitated. All meds are liquid or injectable now. But he is still mobile.

If it helps, I know that people can last a surprisingly long time on a fortified liquid diet.

our district nurse has suggested long time release morphine patches? For Dh pain management is the priority, because he can then sleep and tolerate liquids. But as copper says everyone is different.

unmumnetty hugs.

@2Old2Tango - Hello - So sorry to hear you're in this situation. It is really hard.

DH's appetite decreased as things got worse. It's horrible but usual.
My DH was just under 6ft and weighed 7 stone when he died.

The real shift was two weeks before he died. I would give him tiny bits of poached pear with cream, tiny bits of a cornish pasty, little pieces of cake, tomato soup... - weird things he asked for.

I also gave him those horrible shake things but he hated them.
He would drink cups of tea - but he always loved his tea - and a sharp (Waitrose or M&S) lemonade, something he never had when well.

Food became more about the taste than fulfilling a need. But by then we knew it was just a matter of weeks. We made eating pleasant though - and it was both a difficult and a special time.

My real concern was that he might choke especially as sitting up was hard.

Sending love and hugs.

My DH had a latte habit so I made them with cream to boost the calories. He loved Heinz Tom soup - if I gave him it in a bowl he didn't eat much but if I put it in a mug he'd drink it all.

He ate better in the hospice as his pain was under control.

He had the fentanyl patches towards the end, he felt better after eating and sleeping.

Thanks all. He asks for things but can barely manage a bite or two. His mouth is sore from the drugs. Soup in a cup is a good idea so may try that. I remember my dad having the shake things (can’t remember what they were called) and he hated them too.

I’ve got to take DH for radiotherapy on his head at lunchtime, which will be a challenge as he’s really not well enough. They’re also talking about starting him on a chemo tablet, but he’s so poorly now I wonder if there’s any point, as it will just give him a whole host of other horrid side effects.

It’s so grim. I’m exhausted with it all and now have a mouthful of ulcers from feeling under the weather myself. Anyway, onwards we go x

@2Old2Tango hope all goes well today.

My DH had chemo in a tablet and it really helped him without too many side effects,

We also made proper hot chocolate, my friend gave me her velvitiser (others are available 🤣🤣) and we made it with real chocolate (Also made his lattes in this with the cream)

@2Old2Tango the last stages for DH are a bit of a blur now. There was a long time when he was hardly eating anything, but only a few days after he stopped eating anything at all and virtually stopped drinking.

The dietitian told me to get calories into him any way I could. He liked hot chocolate so I got a Velvetiser. I slipped a protein drink into his and I had a normal one. It was a way of having something that was a luxury rather than something medical. He also liked creme caramel so I bought them by the dozen, he would often manage to slip one of those down when he couldn't face anything else.

At some point I think you have to accept that encouraging/forcing them to eat when they really don't want to isn't really adding to their quality of life or improving their prospects, and just go for whatever you can do that gives them some pleasure. As @daffodilsandredwine says, it's both a difficult and special time. Thinking of you.

I think what @MontyDonsBlueScarf says about recognising when it stops being helpful to push is really important. Both for him and for you. My partner had a PE which complicated his treatment as he was so weak when the cancer was discovered that treatment was really difficult. He was on carbometyx which gave him awful mouth ulcers and thrush, so eating was really painful for him even though his cancer pain was well managed. He ate very little once on the pills, and lost weight rapidly over the last month. But he only had about 48hrs where he didn't eat at all. When he could eat he enjoyed lemon cheesecake and also liked to drink lemon & lime water, I imagine the strong flavours made it seem more worthwhile.

Sorry for lack of paragraphs, for some reason if I put one in anywhere, I end up with pages of blank space!

Hi. Popping on again.
DH has been battling NHL since 2020 and yesterday we got the news that the cancer had grown so rapidly and aggressively that they'd made the decision to stop treatment and go on to palliative.
At the time they told us he was high on morphine and Valium (the mass was pressing on nerves in his back so he had been in excruciating pain) and I'm not sure he remembers/believes what is coming.
I asked doc how long were we looking, months? Weeks?
She said weeks, possibly days.
I'm numb.
He's actually a little better today and has regained movement in his legs but I'm refusing to get my hopes up that that means the cancer is shrinking, it's probably just moving around I guess.
He keeps talking about the pre planned holiday we were supposed to be going on next week. I know it's the drugs but it breaks my heart.
This whole journey has been such a rollercoaster, brilliant days followed by awful, back to good days. But now I think we've reached the end.
They let me stay at the hospital last night, according to my watch I managed 1hr 30 sleep. I'm exhausted but my brain won't switch off
Just venting x

Hand hold here for you @stormonaspringmorn
I'm so sorry to hear this.
I've no useful advice but just know that you are not venting into a void. We are here, we hear you, you are not alone.

Yes it’s hard to believe this is it isn’t it? you always hope for a miracle.

@stormonaspringmorn I remember getting the news that it was weeks and I didn't really believe it until a couple of days before he died. The hope is hard to shake off but what else could keep us going in the face of such awfulness? You're not alone.

@stormonaspringmorn ((hugs)) I remember that conversation too, it's soo hard to take it in and process it (my DH also was in denial which didn't help)

Up early blitzing the flat as they said they're going to allow him to come home on palliative care in the next couple of days.
He had his last treatment on Saturday morning and the scan on Sunday showed progression so I questioned yesterday how they can be absolutely sure that it's not working, maybe it was going to take a couple more days? So he's on his way to a scan now to double check. I know they know what they're talking about but after he regained control of his legs I just want to be 100% sure.

Much better to be sure and not have any 'what if' type questions left.
Love a good clean blitz, somehow makes me feel better.

@stormonaspringmorn just sending thoughts and best wishes from someone who’s not long been through this. Hoping the scan results are good for you.
make the most of any time you have left x

I hope the scan results are good, I think it's very important to answer all those questions. I remember pushing hard for a scan that DH had missed due to his stroke, the NHS seemed reluctant to do it but did in the end. The results from the tumour were what I was expecting but, more importantly, it showed up saddle embolisms and had DH came home as planned the move could've killed him before he got home. As it was they kept him for an extra 24 hours for treatment then he came home on end of life care.

@stormonaspringmorn I don't have much to say, but just wanted to say I'm thinking of you both, and sending strength.

I'd just add that when my DH moved from palliative to end of life care, it involved some serious sedation and it was difficult for him to speak after that. You may want to ask whether this is likely so you can plan for it.

Home is good if that's what you both want, well done.

Hello all
It's been a week with DH at home on palliative care. He lulled me into a false sense of hope at the beginning of the week by seeming to get better, walking around (we went to our fave cafe for lunch) and being comfortable with no pain. I think it was down to the corticosteroids.
Well he's taken a turn for the worst tonight and the pain is back and it's just hit me like a ton of bricks again. He's taken more fast acting morphine and has fallen asleep, but not before having a little cry. My son (20yo) has been an absolute star throughout this, helping DH to the toilet, springing up off the sofa every time DH looks like he wants to get out of the hospital bed ready to lend a supportive hand. It's really made me swell with pride and I think DH feels the same because through his tears tonight he said "how can I leave him? How can I leave our boy?" Which, I'm sure you'll all understand, shattered my heart.
I spent the next 10 min stroking his head to get him to fall asleep while telling him exactly why my son (his step son) is the way he is. It's his influence on him and his continued display of courage and strength. I couldn't have asked for a better role model for my son. And he will never leave him because the lessons he has taught him will stay forever. I always thoughts sentiments like that were for the inside of a greeting card but wow now I feel it. I just can't imagine that soon, I'm likely going to lose him. I'm hoping for a miracle.
Rambling again x

Ramble away, we're here to listen. You are absolutely right, even when his physical presence has gone he will still be all around you. Sending you much love and support tonight and in the days, weeks, months ahead.

You can say what you feel here but actually there's so much love in your post, from your DH's concern to your DS's loving care and your reassurance. Sending you strength and peace.

Thinking of you all @stormonaspringmorn

Hope all is ok @stormonaspringmorn . I found the ups and downs - well one day and poorly again the next - quite hard to deal with.

Sad to report that my husband died today. He had had a drastic downturn in the past week or so. His mental capacity was getting worse due to the cancer around his brain, and he was always confused and talking nonsense. At the weekend he became extremely restless and agitated. He was admitted to the hospice on Monday and they said it was terminal agitation, an end of life symptom. He was also having delusions and his chest was rattling. They sedated him to give him some rest and this morning his breathing had worsened. Me and our two girls were with him at the end, but sadly his sister was just 10 minutes late getting there. Still feels unreal, but we are all totally exhausted from the crying and the emotion of the day, so hoping for a good nights sleep tonight, if my brain will switch off.

I hope you're asleep by now @2Old2Tango but I just wanted to say how sorry I am to hear your news

@2Old2Tango be kind to yourself. The next few months will be a rollercoaster of emotions.
It’s coming up to 4 months since my dh died and I’m still processing. I don’t think I’ve really begun to grieve yet as I’ve been consumed with so many issues.
i hope you have some friends or family you can lean on for the next few weeks x