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

[iwantavuvezela]

Thank you @Willowkins

[loubieloo4]

Thank from me also @willowkins

[notapizzaeater]

@willowkins thank you for this life jacket x

[Frikonastick]

Thank you @Willowkins

Well, my crusade for the meds can be stood down. There will be no need for letters to the PM.

DHs results show his meds are no longer working.

Kidney cancer account for about 2% of all cancers, and DH has a rare subtype which accounts for 5% of the 2%.

Which means that any other treatment path is properly experimental. Not the drugs themselves, but their use for his cancer.

What the doctors said to do was get scanned every 2 months and then when it reaches critical mass, we can attempt a treatment. Each possible treatment path that they think likely costs a minimum of $120,000 so over 60 thousand pounds.

I haven’t managed to make it into work for the last 2 days I’m just so tired. Bone bone tired.

Thank you @iwantavuvezela @loubieloo4 @notapizzaeater @chinchin77 @SchrodingersKitty for being here

[loubieloo4]

Good news my Covid test was negative 👍🏻 don't have to worry about being in the same room as dh now!

[loubieloo4]

@Frikonastick how are you doing today? Thinking of you and dh xx

[loubieloo4]

@chinchin77 sending all my love and strength to you, I hope dh is as comfortable as can be. We are all here for you 💜

[joystir59]

Can I join in this thread please? My DW has advanced ovarian cancer (stage 3 clear cell), diagnosed Oct 2019, debunking surgery Dec 2019, residual tumour left on diaphragm, 6 rounds of chemo which ended 21st May 2020. Since round 5 she hasn't been able to eat, constant nausea and vomitting, would pick up for a day but then be back to square one. Admitted to hospital yesterday severely dehydrated,cm waiting for scan results and in meantime she is nil by mouth. Does that suggest surgery for a blockage? Unbelievably stressful not being able to visit, also her mobile phone has no signal on the ward she's on. Just can't believe the breathless speed and relentless brutality of this illness.

[notapizzaeater]

Bring up a chair, hope you get answers soon.

Brill news about Covid, must have been a huge huge worry.

DH wants a new telly and wants to go to the shop to look, Ive been showing ones on the web, but no that's not good enough ! Eek, we've not been out other than hospital visits

[joystir59]

Anyone else not able to visit their loved ones who are seriously ill in hospital? The lack of contact is really painful. My DW is on a ward where she cannot get a mobile signal and there is no WiFi. But really the issue is not being to visit her. She is really ill, nil by mouth, waiting for scan results which should have been reviewed this morning but weren't, possible obstruction somewhere in her digestive tract, no one giving me any information. Anyone else? The decision to completely stop any form of visiting right across the board is too harsh!!!

[ginginchinchin]

@joystir59

Anyone else not able to visit their loved ones who are seriously ill in hospital? The lack of contact is really painful. My DW is on a ward where she cannot get a mobile signal and there is no WiFi. But really the issue is not being to visit her. She is really ill, nil by mouth, waiting for scan results which should have been reviewed this morning but weren't, possible obstruction somewhere in her digestive tract, no one giving me any information. Anyone else? The decision to completely stop any form of visiting right across the board is too harsh!!!

I'm so sorry @joystir59 - I have no direct experience but didn't want you to think no one is listening. I can't imagine how terrifying this must be. Have you spoken to PALS about this. I'm here to offer a handhold xx

[Willowkins]

Of course you're welcome joystir59 but so sorry you have to be here.
Not had your experience of not being able to visit but of course the waiting for answers ... well you're not alone.
I'm not a doctor but I do know a bit about bowel blockages. Nil by mouth might just be that she's not tolerating liquid. They might put her on a drip instead. If the scan shows a blockage, then they would most likely try other things before surgery.
Have you had any contact with the Macmillan Nurses? I always found them really helpful.

[joystir59]

She was assigned a CNS, is that a Macmillan nurse? Since being on chemo it's been the cancer triage team who have helped, not the CNS. I will try PALS, thank you, and for the kindness.

[joystir59]

And she has had a blood transfusion and loads of iv fluids as she was very dehydrated. I just saw her face drop when she realised no visits allowed. I am chasing that scan tomorrow!

[Willowkins]

IV fluids is a good sign that they think she has a chance. Now get some sleep for that fresh start tomorrow.

[loubieloo4]

@joystir59 the lack of visiting is due to coronavirus, they will let people visit if they thought the patient was deteriorating rapidly, which they obviously don't with your dh, which is a good thing! She could be nil by mouth for lots of reasons including maybe more scans or an endoscopy (camera down her throat to see if there is a blockage higher up) or a colonoscopy (a camera up her back passage to look for obstructions in the bowel).
I would ask to speak to the nursing team and ask if the ward manager or doctor could call you to explain more about the treatment plan and to ask about visiting. You may have to wait a while whilst they do ward rounds etc, I would call around 8:30am so they have had chance to hand over from the night shift.

[loubieloo4]

Apologies @joystir59 it changed dw to dh.

[notapizzaeater]

Its really really hard the not visiting, my DH was taken off in an ambulance a fortnight ago, I wasn't allowed in with him. Luckily he had a good signal so could ring me.

Pals might be able to help but they have days to reply. I'd try the cancer nurses first - can you phone the ward and ask to speak to her? If she's in for a while find out the best network and change her phone.

[notapizzaeater]

@joystir59

Hope you've got some answers today x

[joystir59]

Hi, thank you everyone. We got some answers,not the best news unfortunately. She has an impaction in the bowel which they will try to clear with enemas and medicine over the next few days which will allow her to eat again, which will be great. The scan revealed that she has new lesions in her lungs and the mass on her diaphragm has increased since the last scan, so the chemo isn't working. So there will be no more treatment and it's just about quality of life and making her comfortable. The issue is- she will not, had not, won't talk about the possibility, the imminent reality of her own death. She is relentlessly cheerful. I'm left dealing with it for her, crying for her. I'm alone. This is so painful and hard and they still won't let me visit her.

[chinchin77]

Thank you @willowkins for new thread, what would we do without you!

Welcome @joystir to the place you never thought you'd be but ever so grateful to have found. I am so sorry about your DW, the more I read, listen (finding 'Griefcast' podcast very therapeutic) it seems a thing with many - not to accept or believe their impending mortality - my DH said to me after open surgery to remove feeding peg as all sorts of complications, where more cancer was found (all doesn't necessarily show on a CT scan, I have learnt) that 'I have loads of time left'...

Update - he's still in hospital, feeding via IV drip, pain meds upped enormously now on a mix of morphine / ketamine with plan b to include an ongoing epidural to target lower back pain, however this comes with significant risk of infection. Was moved to own room last night, family from UK have applied for visas with exemption from quarantine. It really is the shittiest time to be in this situation. At least we can visit though.

Thoughts and strength to you all

[chinchin77]

@frikonastick I'm so sorry about DH. What an extortionate amount of cash for meds. I'll try to win the lottery for you

[Frikonastick]

Thanks you @chinchin77 funnily enough I actually dreamt we won the lotto a couple of nights ago. Was crushing waking up to reality!

[notapizzaeater]

Hope you've all had as good a day as you can 💐

[joystir59]

My heart goes to everyone here going through the mill of this illness with their loved ones.
I spoke to my DW's consultant yesterday and he seems confident that she will be coming home within the week, so I need to start to get my head around what needs to be in place at home. Has anyone experience of this? I will talk to her CNS tomorrow. It's complicated because she is being treated at a regional specialist cancer hospital but we live 40miles away under a different trust. If she needs a hospital bed who assesses that, who pays for it? Ditto commode chair etc, who would come to provide nursing care if needed to put up iv drips etc? I'd be grateful for any experience sharing around this please.