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

@Willowkins i am sure they’d be OK with that, but it’s DS’s first day of Year One, and so I’d rather he didn’t go in late. It would still involve taking the kids to the next city and back and the appointment is at 830 in the morning so I’d have to drop him around 8 anyway. Ideally someone else would take DH but there just isn’t anybody!

Unsurprisingly we were slightly late for school, but they marked ds in on time anyway. God bless them!

I am finding it very hard to talk to DH sometimes. We’re sat watching TV and an advert for cancer research came on and it feels horrible, like a huge elephant in the room. At any rate, his operation is on Thursday at 7am (seriously; the hospital is nearly an hour away!) and so luckily his friend is taking him in.

I think it's what they call a fatal attraction - it's not that there are more ads on cancer but they spark recognition.
The thing that got us through those awkward conversations was mostly listening - and a dark sense of humour.
Hope all goes well on Thursday.

DH has been watching the retro channels, which are full of cancer ads and funeral plans. When they come on I hold his hand and we roll our eyes a bit. When I can feel he's really feeling black I stand in front of the TV and clown around with a silly dance or something. The dance doesn't really change it but knowing I'm doing it to distract him makes him smile a bit.

I hope everything goes as well as it possibly can on Thursday @lastdaysofaugust. Waiting to hear is horrible. 💐

Hi all, things not so good here. DH has been going downhill even more since he came out of hospital 31/8. More breathless, more exhausted, more pain. PET scan was arranged for Mon 7th, and we got the report the same day (can you imagine that in the UK?!) The cancer has spread widely throughout his lymphatic system and the lesions in the pelvis have worsened, which we had guessed from his symptoms. We considered going to ER from the imaging centre but because he was radioactive they encouraged us to delay it, if possible. Not sure we should have done that, but DH agreed to wait.

We went to ER on Tuesday and by then he was in respiratory crisis with oxygen sats around 80-82%. Although initially he was put on the regular ward, during the night he was moved to ICU because the nasal cannula were insufficient for oxygen supply and they needed to put him on a machine only found in ICU and HDU. He's not on a ventilator, but some kind of pump currently set at 60% oxygen. In the last two weeks he has lost the ability to do almost anything independently. He can stand briefly, but then sits down panting and exhausted for several minutes before he can do anything else. I supported him to wash while sitting on the bed yesterday and he said let's only do that every two days, it's enough. He's not able to get to the ensuite bathroom so peed into a bottle standing beside me - the first time in our 16 years together that he has ever had to do that. There is no dignity in this stage of life.

The respiratory doc wants him to have a bronchoscopy, but he needs to manage on 40% or less before they can do it safely. They think he has DAH - Diffuse Alveolar Haemorrhage, which is where the lung alveoli bleed into the lungs, impacting oxygen uptake, and that it could have been caused by chemotherapy and/or the burden of metastatic cancer. He's had three units of red blood cells since admission as his Hb is still awful. He's on a cocktail of opioids and a PCA pump for morphine.

I'm heading back into hospital now. My lovely friend has taken the dog for the day so he can hang out with her boys and she's going to bring back a big pot of veggie soup for me. Some friends from work are going to pass by this afternoon and hang out in the hospital Starbucks with me. I'd love to have my parents here but they are too old and sick to travel. My daughter is due to come over in mid-October but who knows what state we'll be in by then.

I’m so sorry @thornbury. That’s such a lot for both of you. I’m glad you have good support. Words are completely inadequate. 🫂

Thanks for your honesty @thornbury
Who knew that the sickness 'in sickness and in health' would turn out to be so devastating. Or that the vow, fueled by love, would lead us to such extraordinary sacrifice. My heart goes out to you both.

Aww sounds like you’re in the eye of the storm @thornbury.

ironically my very last conversation was with DH whilst I was holding a bottle for him to pee into stood up ! I smile about it now but at the time it was bloody horrible.

I can’t remember have they got him on steroids ? They really helped my DH, normally they reduce the dose but as we all agreed at that point it was pointless and the benefits far outweighed the negatives.

@notapizzaeater yes he's on IV steroids. Because they can't take a look to identify signs of either infection or inflammation, they treat both by giving antibiotics and steroids.

They tried reducing his oxygen to 55% but he was on 65% when I left.

@thornbury hope you’re all right. @notapizzaeater how are things?

DH went in for his surgical biopsy on Thursday and was meant to be released yesterday but wasn’t and today they’ve found an infection in the drain of his tumour … I don’t really know why are drained it and nor does he. So he’s in until tomorrow. I am a bit worried and his friend is now here and I could do without it tbh although he means well.

Work is OK, on the one hand it’s nice to be back for now but I also feel strangely disassociated.

@lastdaysofaugust im wondering if what you feel is what I felt and recently found out was called depersonalisation. I followed some on line advice on what to do and it helped me. 💐💐💐

@lastdaysofaugust I hope your DH is home now.

@Hisredipad I haven't heard of depersonalisation but if it helps me get through the next few weeks, I'm going to look it up.

Horrendous weekend here, I have been an emotional wreck. Yesterday morning the ICU dr said the x ray taken on Friday showed that DH's lung condition had worsened compared to the one taken on Tuesday in ER, he was now on 80% oxygen rather than 60%, and that they wanted to put him on a ventilator. I was aghast but DH didn't realise the implication until much later (with the help of CoPilot and another conversation with the nurse). Dr said he'd come back around noon and put in a special sort of cannula into the radial artery so that they could monitor his blood oxygen levels more closely and accurately. After monitoring until late afternoon, they kind of backtracked, but I was already in panic mode. I got in the car and sobbed, much to the annoyance of the person who waited for my parking space before giving up. I was half expecting to get a call in the night to say that they'd had to ventilate, or to walk in this morning and find that they had, but an early morning text to DH was returned so at least I knew he was still conscious!

They decided not to ventilate today but continued to monitor, and tomorrow the pulmonologist and rest of the team will review and suggest next steps. DH has already decided he's going to refuse ventilation and ask that they wait another 2-3 days to see how his lung condition changes. The advantage of ventilation is that they can carry out the bronchoscopy and lavage, which could make a big difference to his condition; they can't do it while he's oxygen dependent.

Essentially, if he wasn't on oxygen he'd have gone into respiratory arrest and died already.

Oh @thornbury how frightening for you all, I am sorry.

We’ve had a very hard weekend to be honest. DH was supposed to be out on Friday but had an infection so was kept Friday night and last night. He’s come home with an awful scar and it’s brought home how serious it is - I knew it of course but somehow seeing it is upsetting. The children were upset and DD cried and said it was scary. The worst thing was that DH was crying when he came in. Not big sobs but just silent tears. It’s unbearable and I don’t know how we’re all going to get through this. I keep thinking, why us, why me, why him, which is so unhelpful.

DS is bloody awful … I know he’s upset and traumatised but I can’t seem to help him, he’s wired and manic, keeps asking for cuddles but then almost gets me in a headlock I can’t escape from without really yanking away which I obviously don’t want to do!

However I received an unexpected gift of food vouchers worth hundreds of pounds from colleagues; incredibly kind.

@lastdaysofaugust and @thornbury
I wish I had words to make it better.
Sending you strength and wisdom while you navigate this.

I am so sorry to hear of the awful weekend you both have had @lastdaysofaugust &.@thornbury
It is terrifying for our DPs and awful to watch when there seems so little we can do to support them.
I very much fear that my DH is heading down a similar path to you thornbury.
He has a cancer of the lung lining. We have already been told that it is inoperable and any treatment will be to make him more comfortable.
I don't know if this means they can shrink the tumour or not.
He is on strong pain killers but they never take all of the pain away and in the mornings and overnight the pain is very bad. We are hoping for more advice about what can be done about this.
We were supposed to be getting a plan last week but when we arrived at the appointment they said they would have to do more tests first so we are apparently getting a plan this Thursday.
Last Wednesday he had a second lung biopsy and they also drained a lot of fluid from his lung to relieve his collapsed lung.
We have more scans this week and next Monday to explore 'suspicious nodules' on his pancreas.
Hard to get out heads around how fast this cancer seems to be spreading when less than a month ago they were telling us DPs pain was caused by a broken rib!
I feel for all you others in similar situations trying to support your loved ones. This site is a comfort and a support ♥️

Really sorry you’ve both had such horrible weekends. I hope you’ve both drawn on your support networks. People are incredibly kind and it helps a bit.

@shiningstar2 so sorry to hear that. The speed of change is terrifying - it's not even 6 months since DH was diagnosed.

There was a case review today and the doctors came to tell us around 5pm that due to the lack of improvement, the next step is huge doses of steroids (1 gram instead of 160mg a day) and that they have decided against bronchoscopy on the basis that it's 1) too risky and 2) would not provide any information that would change what they are doing and will do. If there's no further improvement in 2-3 days (he's still on 80% oxygen), no one seemed willing to say anything much about Plan C. DH told them he doesn't want to be ventilated and his oncologist seemed to think that equated to DNR - I think there's a further conversation to be had there before he goes down that route.

He was really narky and confused today - I have had to interpret and repeat what the staff are saying, break things down into really simple language, explain, repeat, repeat some more, explain some more, go over it all again ten minutes later. He will just stop talking mid-sentence without even realising he's doing it.

It’s so bloody scary being in the eye of the storm, hopefully the higher steroids will help, have you mentioned to the doctors about his confusion ?

we struggled getting the pain under control, it was only got on top of when we went into the hospice (not end of life - just for pain relief) my DH had fentanyl patches to help. Along with all the other stuff.

((gentle hugs))

I am so sorry to hear your update thornbury. It has all happened so fast. I hope they can provide some relief and a plan soon. The watching, waiting, wondering and trying to be of use and comfort to our dear ones is awful. When I see DH in such pain and whatever they give him always wears off before the next dose it due it breaks my heart. He tries so hard not to show me how much pain he's in but it's always apparent, also his own anxiety which he doesn't really talk about.
not a pizza eater it's interesting that it was the hospice which finally helped sorted your dear one's pain.
We rang the lung cancer nurse yesterday because there was an even deeper new pain and were sent down to the hospital's emergency day care. Bloods/x-rays taken nothing new seen sent home with higher dose of pain killer.
We see the specialist on Thursday when we are supposed to find out exactly what type of pluera cancer DH has. We were supposed to be told last week but then they said we needed more tests first.
We know the cancer is inoperable so it's a case of what they can do to maybe shrink the tumour and/or make DH more comfortable.
If they say the treatment is palliative only we will ask to be referred to pain specialists.
I'm wondering @notapizzaeater whether you had to ask to be referred to the hospice for pain relief or whether the specialist suggested this?
Also wondering if anyone can tell me whether they though Macmillan/Maggie's were useful to them.
Once again sorry for long post. Hope everyone has as best a week as possible ♥️

I’m a little behind with you all but no one should have to be in pain.

our GP got the hospice to help with pain (again not as end of life care) but ultimately it was when in kings a lady dr called Rebecca came from Guys and sorted it by titrating pain meds up safely. I think it needs a specialist dr as she was for that. Just wished we had met her two months before as it would have been so much easier.

I would push oncology for a pain dr referral

sending you all big hugs 💐💐💐

I read this a lot @Hisredipad but I am not sure how true it is.

I slipped a disc in my back many years ago now: it was absolute agony and I was on very strong pain medication (diazepam, Tramadol, Naproxen, all the big guys if you like) and it was still incredibly painful.

DH has secondary bone cancer; he’s in pain, he takes all the big boys to reduce the pain but he’s still in pain. I am not sure there’s a way around this to be honest.

Trust me there is a way. DH had bone marrow fibrosis and dr Becky got him out of pain xxxx

there are a lot bigger boys than the big boys. BUT you have to have specialist drs to prescribe xxx

We have a daily visit from the pain specialist nurse and/or doctor. Since admission last week, they've doubled the fentanyl and gabapentin, provided patient-administered morphine, added a 6 hourly morphine 5mg top up, changed that to 4 hourly, and made 1g IV paracetamol 4 times a day regular instead of on request. He's also had loxoprofen and lidocaine patches but isn't convinced by them. I had to say don't make anything on request, he's always in pain so just give it to him. He's too exhausted to remember to ask.

Oxygen is up to max 90% today. X ray taken today shows no improvement but dr says there is often a lag.

@thornbury sounds very similar to my DH when he was in Kings hospital. I questioned the reason why they wanted him to ask for it when he was in pain and then it took two hours to get it from pharmacy. I suggested that if he could have it every so many hours, why didn’t they just give it to him? And lo and behold the following day they did. That made a huge amount of difference because getting out of pain when you’re in pain is actually difficult but keeping ontop of the pain meds so they didn’t run out Actually made a big difference.