Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

Hubby still in hospital but much perkier now the steroids have started working their magic. He's still on oxygen as needed, we're not allowed in but he's been told as long as he wears a mask he can stroll to the on site Costa, so DS and myself are going to go to the hospital Costa tomorrow and 'bump' into him .....

@notapizzaeater a very good plan.

Great plan @notapizzaeater!

Had a lovely coffee in the hospital Costa, was priceless. MDT meeting tomorrow - eek !

He's home, I've no idea what's happened at the MDT or when he can restart his cancer drugs, I will be phoning tomorrow ......

I haven't updated for a while as things suddenly got very difficult. DH (terminal central nervous system lymphoma) is now on a hospital bed in the sitting room, with very limited mobility and borderline incontinence. I am having to sleep on a camping mattress in there with him as he is waking me hourly for help with peeing or to change wet sheets when incontinence aids fail or to discuss a new confusion or when very agitated or anxious or upset. I am unbelievably exhausted. I am managing to get a few hours of sleep in the evening when DS can sit with him (though DS finds managing the physical care very hard as DH is not very cooperative with him). I then get about 3 hours more sleep in 30 minute bursts through the rest of the night. All sorts of medical people are involved and Continuing Health Care have agreed to fund and arrange some carers but it is still not actually fixed up. I've been trying to find private carers but it is very tricky to get people to do nights, which is really what I need.

His hospice nurse is pretty sure that we are reaching the final stages, though we are not yet at the point of active dying which may take some time. I had not expected it to be so absolutely exhausting and relentless. There is just no time to actually feel anything, other than abandoned.

That sounds rubbish @SchrodingersKitty - I know it's a cliche but you do need to take care of you (easier said than done)

Has the hospice advised anything for the incontinence ? At least if you can go a few hours between changes you might get a better rest ?

@SchrodingersKitty - oh god this sounds so very hard. My DH had wanted a hospital bed at home but we didn't make it as his oxygen levels went beyond a home facility. Selfishly, I was relieved as I knew the care would be far too stressful for me - as no one allowed aside from us due to Covid. I feel and think I will always feel enormous guilt for feeling this way, even though DH never made it home. 😢

@SchrodingersKitty so sorry you are going through this 💔 dh and I have had the talk about end of life care and can't make our minds up. Will it be harder for the children if he stays at home? But I'm a nurse so want to look after him... it's too much to think about.
I hope you have plenty of support.

@chinchin77 how are you doing?

@notapizzaeater how is dh now? Any news from the MDT?

So dh and I spent a wonderful 2 weeks in Greece on our own without the children 😉 we stayed in a 5* hotel in a swim up suite (fully pushed the boat out) it was perfect, dh slept a lot, read a lot and ate a lot 😂 all whilst I could be on the patio sunbathing or reading. Paradise.....

Then we got home and the world fell to shit again.
We took some left over steroids on holiday so dh would have some energy, worked great until we got home. 2 days after getting back we were in A&E due to dh having left side chest/abdo pain that tramadol wouldn't shift. Thankfully it wasn't a PE which was my worry after flying, his heart was fine, however, they did see something on his CT which dh refused to hear the results as we have the oncologist on weds. A junior dr did slip out to me that he had read the report from his scan in June that there has been significant progression of disease 😢 that's without whatever they saw on the scan last week. Dh is burying his head in the sand as usual, which I get. There is no point in him having the results without knowing the plan. He doesn't know what the dr told me.

He is home now with oramorph for any break through pain he has again, this feels like a slippery slope and we are already on borrowed time. Cancer is shit

@loubieloo4 the holiday sound amazing. DH is currently doing ok, but likewise he’s on 14mg steroids. We’ve a CT and X Ray on Wednesday with results 25th. We’ve no idea what the MDT have said and won’t find out till 25th unless we get a report from the hospital. Our LC nurse just tells us the doctor will speak to us at our next meeting. We are reducing the steroids every 5 days so will still be on them next appointment. The only thing we’ve heard is that theyVe told him to restart his cancer meds.

The Palliative team have been in touch and are speaking to us this week.

Cancer really really is shit !

hi everyone, I'm sorry its all so shit at the moment, we are waiting for results, will have them on tuesday. DH just very tired, a lot of sleeping. Am pretty sure thats a bad sign.

Shoulder bumps in solidarity xxxxx

I'm thinking of you all in these shit times.

I've had a bad day. I miss DH terribly, we are in lockdown and it's all just so bloody sad. Fuck off cancer. 🧟‍♂️

@Frikonastick hope results are as good as they can be

@chinchin77 wish I could give you a hug, it's shit at any time but right now it's even Shittier !

So it was shit as expected. Fuck fuck fuck fuck fuck.....

Scan shows previous tumours have grown and he has numerous new ones in both lungs and liver (to many to count in his lungs), the pain last week seems to be from his lung 😢
His tumour markers have shot up higher than they have ever been.

So the plan is a port next week, he had a picc line last year but hated it and had it took out after one cycle, however, due to the chemo his veins are shot and he is very phobic of needles, it took them 11 goes to get the iv in last week. He hated the picc due to the lines dangling down all the time, hopefully a port will be better as it's put under the skin with no dangly lines!

Chemo will start the week after to give the port time to heal, they are writing up for 12 cycles every 2 weeks with a scan after number six. He is going back on the same chemo (folfox) as last time. They have said there is a high chance the chemo will become ineffective due to the fact he had it before.

I was expecting the tumours to grow but didn't even consider new ones, urgh. The added fun of covid and his immune system being low brings a new set of worries, they have told us he won't be a candidate for itu if he gets it.

So life will be put on hold and will be run around hospital visits once again. I know we have been very lucky to not have had any treatment since dec but shit. I also wonder if he had been scanned on time the new ones might not of had chance to grow 😡

Ah @loubieloo4 I’m sorry I really am xxx

Thank you @Frikonastick

How did you get on with results, I'm hoping better than mine 😘

@loubieloo4 shit shit shit ! My DH is needle phobic in a way I was glad chemo was off the table as the trauma it would have caused.

We've had put ct and x Ray today. Pallative team are doing a video consultation in Friday - DH can't understand why as he currently feels so well, which of course he does he's in huge amounts of steroids ....

Hope your news was good @Frikonastick

@loubieloo4 wtf are the insurance company doing ! Life's bloody hard enough without them twatting about !

No good news I’m afraid. Disease progression. Which we expected. But this was the first time it really sank in that there will never be good news again. It’s just going to be worse every time we go. We are hoping for six months before it gets very hard.

We are yet to try sort the insurance out, I’m too scared

My thoughts are with you all in these shit times. 'Disease Progression' is not what you want to hear - I couldn't believe grating this after all the chemo DH went through. I'm so sorry.

DH applied for insurance, oncologist had to provide letter etc - the payment was made and he was convinced it was a mistake as the direct debit came out a few days later. More denial that he was terminally ill. 😢.

Stay strong (whatever that means..)
🌸

'Hearing'

So dh has been back at the hospital today for his pre assessment. Port goes in on Tuesday, then chemo starts 26th aug every 2 weeks until feb. 12 cycles in total, a scan is booked after the 6th one to see if it's working. It's at 80% due to the reaction he had last year, hopefully he will be ok.

It's weird he is in a worse state medically right now as he has more tumours than last year but it feels completely different. My brain hasn't caught up with the news yet. I don't think I want it too.

On a different note, what are you doing about schools in September? Dd is due to go into year 10 and I really don't know if I want to send her.

My son is due back at college in sept (he's ASD so currently gets a taxi to a pick up point who waits with him for a college coach and reverse at night) they phoned me last week to see if I would take him for mileage but don't think they had realised college is 46 miles away (agriculture college) .... I'm in two minds over it, lots of his is practical so he's actually outside but I'm not sure. I work with secondary school ASD kids and currently not planning to go back - there's no way In hell some of these children will understand (and comply) with social distancing.

I feel in a holding pattern till next results on 25th. Brain MRI been booked today for 6th sept. DH was talking today about my future without him which is really really rare.

I just remember our oncologist telling us right At the start that if DH was to get it he would die. No fluffy stuff, he would die.

It's so hard, DS is desperate to go back.

This resonated with me, loudly and also made me so very grateful I was able to visit DH at this same hospital as he was dying.

Thinking if you all 🌸

https://www.theguardian.com/commentisfree/2020/aug/15/when-someone-you-love-is-dying-your-sadness-is-infectious-in-lockdown-this-grief-is-shared?CMP=ShareiOSAppp_Other