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]

@CopperSeahorses your DH would be so proud of you. You are an inspiration.

Thank you @Willowkins and @MontyDonsBlueScarf he was a huge inspiration, even in the last days of his life he remained dedicated to the children we fostered.

Hi. New to this side of things. My Dh has been definitely diagnosed with a pulmonary embolism. He has had tests for and waiting results for potential oesophageal cancer - he definitely has a tumour, it could also be stomach cancer. Our life has been totally upended. He’s clinging to any hope it’s something else. Whilst I can’t see it being anything other than what his consultant is looking for and almost drip feeding us that it is cancer.
We only have each other. But I cannot do this.it’s been three days from Dh emergency admission and he’s coming home today. Biopsy results not for another two weeks. My brain is screaming for everything to just stop. Our home, our safe space is about to be invaded by cancer.

what do I need to do? How do I do it?

@Alphabet1spaghetti2 all of us on here have done things we never thought we'd be able to. You will too. We'll help.

It gets easier once you have a diagnosis and a treatment plan. Until then, try to remember that not all tumours are cancer and not all cancers are the same.

For now, your brain won't stop screaming just because you tell it to. The trick is to give it something else to do. An easy one is to focus on your breathing and to say to yourself 'I am breathing out.... I am breathing in' as you do it. There are lots of other simple mindfulness practices that are very helpful in learning to live in the moment rather than in fear of the future. They helped me a lot and still do now.

I hope the test results come quickly and are the best they can be.

@MontyDonsBlueScarf my gp has signed me off work for the month and weekly counselling. Meds if I need them in the future. Sadly she has agreed with me regarding what we are looking at.

My heart goes out to you @Alphabet1spaghetti2 and yes we all started where you are now. It's a shock (I still remember the way the room dimmed and the voices faded out when we got the diagnosis).

In addition to us here on this thread, there's lots of support and trusted information on the Macmillan website https://www.macmillan.org.uk/cancer-information-and-support/get-help

The 'not knowing' was by far the worse stage for me, once I 'knew' I could plan and plot.

You can and will get through this, just take things a minute at a time.

Hope you've managed to get DH some better pain relief than the paracetamol.

I agree, the not knowing was the worst. We were in a similar situation, told it was cancer but not sure what type, several biopsies that were inconclusive before we got the news we'd been dreading. Once we knew it gave us a focus. Waiting for those results is just hell on earth. I also agree that you find the strength to get through things you'd never thought you'd be able to, these threads are an enormous support too, you can say things here that you can't say to real life friends. I am glad your GP is being supportive, it is hard to look after yourself too when all this is going on

He was supposed to come home today for one last time. It didn’t happen. Pharmacy didn’t send up the meds.
trying hard to organise special licence to marry as that is his dying wish. It’s palliative cure and a miracle.

Hi @Alphabet1spaghetti2 I'm so sorry to hear of this situation. I hope the marriage license comes through, I've read of others making that happen in similar circumstances, I can't imagine arranging that whilst in crisis mode at the hospital well done! Its true what others have said you never think you can manage until you do. Sounds like you are doing great considering. We are here for you when you want to vent or cry and to say things you can't say to others. Take care.

Update. Marriage license came through in two hours and the wedding is tomorrow morning at 11:30. His employers are sending some of his mates as witnesses.

sent home with meds and no support, i am apparently district nurse for injections, macmillan and everything else we should have been sent home with. I’ve rung the dr surgery for morphine and they have done a home visit, added drugs to his list and are sorting out home / district care and nurse and Macmillan. Dr surgery is furious with the level of care and are making a complaint. (Doesn’t help Dh but it might help someone else).

palliative care only from now. Nothing more they can do. Fingers are crossed we get sometime. And I get to wash my hair for tomorrow! He’s clean I’m not.

Omg what a 24hours you've had. I'm pleased to hear he is home and getting to be married to you thats beautiful, you are doing an amazing thing I'm in awe @Alphabet1spaghetti2

Have a fabulous day tomorrow @Alphabet1spaghetti2! We'll be thinking of you.

@Alphabet1spaghetti2 that's splendid news. I love an excuse to wear a (virtual) hat. Just so you know, all the Storm Threaders here have got your back.

Hi all. I've read this thread for a while now (and previous ones), but can't recall if I've posted on it. Now I feel ready to.

DH has metastatic breast cancer and the lesions are in his spine, pelvis, ribs, a little in his lung and now in his skull. He was diagnosed at the end of October 2023 and a week later he fractured a vertebrae in his spine. As you can imagine the pain is intense, and they try ever different and increasing amount of drugs to control it.

Mobility had got increasingly bad and we've just had a hospital bed ordered for him as he's finding the stairs difficult. He's very frail and getting quite skeletal. He visits the hospice as an outpatient every week to have acupuncture, and they may admit him for a week or two to try some pain management therapy. I'm so overwhelmed with being his full time carer, and having to manage the multiple medications, that I'm actually looking forward to it so that I can get a little respite. I feel awful saying that, but I have some health issues of my own that are being neglected, and it all feels too much sometimes.

We haven't been given a timeline, but he's been palliative care since diagnosis. His decline in recent months/weeks has been so great I'll be very surprised if he sees the summer out.

There is an element of comfort being amongst others who are, or who have already been through this. So sorry for everyone else in the same situation, whether it be their partner or other loved one.

@2Old2Tango Welcome but sorry you find yourself here. Of course you deserve some time for yourself. You are not awful for saying it.

Please don't feel guilty for needing some time for yourself, we all need it and having a loved one who is palliative doesn't stop that need. Nursing someone you love is incredibly hard.

Happy wedding day @Alphabet1spaghetti2, I am glad you got him home but the discharge sounds chaotic (but somehow familiar too, we had similar issues with DH's discharge).

I hope all goes well today @Alphabet1spaghetti2

Married!! Honeymoon was a walk (30sec) and a sit down in the garden. Perfect.

@Alphabet1spaghetti2 congratulations, sounds like a wonderful honeymoon, 🥰🥰

@2Old2Tango my DH had to go into the hospice for a month to get the pain under control, whilst awful it was lovely as the time we spent together there I wasn't his nurse, I could be me again, his wife !

I found this too. It was invaluable for both of us.

Congratulations to you both @Alphabet1spaghetti2 !

This would be nice. Although I’d be driving back and forth - which I don’t mind as it’s only 12 mins away - I can take a break from the nursing/gofer duties.

congratulations @Alphabet1spaghetti2. so pleased it went ok. The honeymoon sounds just perfect.

Please can I ask for others experiences of their loved one not eating? My DH has hardly any appetite now. He's lost tons of weight and his skin just sags off him. Yesterday his intake was...a few mouthfuls of weetabix, one bite of toast, a yoghurt and grapes (blitzed into a drink), a couple of small jellies with fruit in. He's drinking small amounts.

Yesterday he kept getting hiccups all day which he doesn't usually have.

If it's not too difficult, can anyone share their experience of how long their loved one continued on in these circumstances? He's so weak now, and mobility is bad. We're waiting for a hospital bed to be delivered this week so that he doesn't have to struggle upstairs. The hospice also want him in for a week for pain management, though he's so poorly I wonder if he goes in, whether he'll actually come out 😢

I think it's different for everyone, DH's appetite diminished greatly over the last few of weeks of his life and over the final week he ate nothing and drank little. Because of where his cancer was he needed Creon to enable him to digest his food though and, by the time his appetite went, he was no longer able to swallow the capsules so this might have influenced his time scales.