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

@notapizzaeater good thinking 🧐

Oh we need pictures of the puppy 😁

Thanks everyone .....I phoned the “healer” and told her I would be happy to lose a deposit and we wanted the rest of the money back. I have legal cover on my house insurance and already spoken to someone there. “Healer” needs to have a think, speak to her manager (really!?!!) and will get back to me. The reality is she has had a 30 minute free consultation with my DH, pressurised him into taking a “deal” and now wants to not refund anything! It’s mind boggling!

I am personally prepared to let her keep 20% - £1000 for didley squat - so we can walk away from this, lesson learnt, move forward. if she wants more I’ll take it to court, I’d rather lose all the money and get to take the story out! I was very clear to her about my husbands vulnerability etc, that I have financial POA. I’ll update when she gets back to me. I think she working on how much she can keep!

My personal history- DH - 9 years ago had mole removed from shoulder, got “all clear” after 6 years of check ups - then seizure in Feb, found the melanoma had metastasised to brain, several tumours - he is now on self targeted therapy which is very effective but has a “sell by date” - so he is quite good at the moment, not working, but able - but have absolutely no idea if it’s months or years.

Much thoughts and love to all

Should have added teen daughter and two cats!

Puppy photo, she will be about 30kgs fully grown

That is one adorable puppy 😀🐶

What breed. 30kg is huge! I thought she was a rough coat JRT at first but not at that weight. Airedale crossed with old English sheepdog?

Thanks for your history @loubieloo4 and @notapizzaeater. Brain fog appears to be a side effect of my life right now. I will try and keep up. Does everyone else feel life is too fast and intense and you haven’t got the resources to juggle it all.

I have 3 children but 2 are adults.

She's a cross - but predominantly a mioritic shepherd dog 😀. Good guess, she replaces our Bearded Collie that died this year (hate 2020 !)

Well, fuck.
It looks as though my MiL has cancer ... again.
She was diagnosed with stage 4 NHL a few years ago, had treatment and it went into remission. She had to go back onto ‘treatment’ a few months back as her ‘proteins were raised’. She’s very private about the cancer / her treatment; I think she does it to protect those around her but personally information helps me. (It’s not about me though, of course)
So I don’t know what the likelihood was of this happening or what her treatment is.

Anyway, she went for a routine mammogram which showed a lump, she went back for a second mammogram / scan / biopsy and gets the results on Thursday. The fact that they did the biopsy after the ultrasound etc and have asked her to come back for the results makes me think it’s bad news.

My husband is terrified. His dad died when he was 13. We have an 18 month old who loves her Nanny. SiL is in her last year of uni.

Fuck.

Sorry, should say, I’m posting as I don’t have anyone to talk to about it, I don’t feel that I can tell anyone right now as nothing is confirmed so it feels like gossip.
And obviously I want to offer myHusbamd support rather than putting my worries on him.

@RadGlags fingers crossed for Thursday. X

Has anyone's appetite dropped, like really dropped ?

Friday for example we Ate small bowl cereal, half a currant tea cake and a yoghurt. Yesterday he'd said on Sunday he fancied a McDonald's bacon bap so I fetched one about 10am - he ate half plus haLf the hash brown then nothing till about 7 o'clock when he was still saying he wasn't hungry but I managed to 'encourage' him to have a mug of tomato soup. He's drinking ok, I made him a hot choc yesterday with milk to get something in him. This is causing issues as he's type 1 diabetic so having to adjust all his background insulin's.

I've just ordered some new scales to weigh him on as the old ones tell lies when I get on them ! He's not been on them in ages so need to know what he weighs. He's always had a funny Rock hard pot belly (from his kidney disease) but his legs and bum are fast disappearing.

@RadGlags good luck for Thursday, I hope you won't need to but keep posting here. We are mainly partners/wives/better halves but we do understand.

@notapizzaeater if dh is struggling to eat I try to get him to drink some protein shakes, they have some in Asda that are called fuel in lots of flavours. If I remember right they were 5 for £4 and only small cartons of 300ml so not as daunting as some. Obviously that depends on his diabetes I guess. His weight has been steady for about a year now. He did lose 3 stone when he had his HiPec operation last May but managed to put it back on thankfully as he was down to 8 1/2 stone at 6ft tall so looked like a bag of bones.
I have lost 3 stone probably closer to 4 in the last eighteen months without trying, I really needed to lose it but have no appetite at all I can go days without eating, yet I'm still overweight!

No chemo again for dh today, his neutrophils were still 0.7, we have no plan yet until we have his scan results tomorrow. Although I think he will be continuing chemo as the nurses were trying desperately to get him a date for next week but they have no space until 8th Dec ffs. They have suggest he could have a cycle at another hospital if needed but dh has said he won't bother and just have another couple of weeks off. I did ask about the gcsf injections but they told me to ask the consultant tomorrow 🤨. No sleep for me tonight waiting for the bloody phone in the morning, part of me thinks it won't be bad news over the phone but the other part says it's not going to be great news as they were trying so hard to get him booked in. The bloody uncertainty is shit, no wonder I'm going grey and I'm only 40.

@loubieloo4 --->>>> and a 🤝

I've slapped weight on - just eating crap but tomorrow I'm starting again and determined to loose a good few stone ! I need to be healthy for DS

@notapizzaeater my sister is barely eating and vomited 5 times yesterday despite little intake
I however have eaten 4 bounty bars tonight as “eating my emotions” seems to work well.

@RadGlags hope today went well

@loubieloo4 yes the uncertainty is terrible. I live on tenterhooks waiting for the next revelation. You’re gripping onto hope mostly.

Copied and pasted from my thread, sorry feeling so mad with it all today.

Scan results were ok I guess. Mostly stable with some growth in his abdominal wall, dh is pleased. I sat and sobbed when he had gone to bed, in my mind any growth while on chemo is shit news.

The plan is to try and have chemo again on Tuesday at a different hospital (the medical team have their fingers crossed his bloods are ok, what the fuck. If not they want him to wait until they naturally come up), then give the GCSF injection when he disconnects on Thursday. Then go back to our normal hospital for chemo every other week until..... well who the fuck knows.

I feel so crap for saying this but we can't live our lives like this forever, our youngest is off school for the foreseeable, our older two go to uni one day a week but stay in their bedrooms for the rest of the time so they don't infect dh with anything. We don't go anywhere other than the hospital as dh is at such a high risk. I can't even go and see my mum for a coffee in a nice cafe or a walk around the park. The walls feel like they are falling in, let alone closing in.

And then I'm expected to be happy about the scan and the fact that he can have more and more chemo. Obviously I am pleased he can still have treatment but the whole regime of it really takes it toll. Dh doesn't drive anywhere now, he worries that he's to tired. That means I have to take him and sit and wait in the car, sometimes the blood test and covid test can take an hour! We are pretty much at the hospital 3x a week for one test or other, then chemo day and then back again a few days later for his disconnect. I was really hoping for some slightly better news so he could have a month or two off from treatment, just to give us a break.

Then fucking covid and our incompetent PM decides were are going into tier 3. Fuck it all today.

(((Hugs))) @loubieloo4 It is shit, totally shit. Ive today been to a real life shop, like actually went in and pushed a trolley and bought stuff ! It was soooooooo good ! Can't believe how much the simple things matter. We live from results to results knowing they aren't getting better just praying they aren't 'that bad'

@TooOldforBouncyCastles 4 bounties, surely the coconut and cocoa beans counts as your five a day ?

We've got a call with pallative tomorrow, I'm hoping they can increase his pain meds as he's in a lot of pain in his back / ribs. And to compound it we think he might be getting a chest infection.

You two are having a horrible time of it.

Sorry to hear how difficult things are for you Loobielou - it sounds so very hard and relentless for you.

Notapizzaeater - hoping you get the palliative support that is needed.

Toooldforbouncycastles - that sounds really tough for your sister ...

Radglads hope today went okay - so much on your plate

For me. I had a chat to the “healer” busy scamming my DH, she is meant to get back to me this week with the solution! (That is paying DH back for the set of healing he paid upfront for) So I’ll update hopefully with her being a decent human being - I made things very clear to her about DHs vulnerability etc ...if she doesn’t pay I’m taking legal action ...l

Love and strength to all

@iwantavuvezela bloody hope you get some joy. Very nasty world we live in where they take advantage 😭🤯🤯🤯

I was wondering how you got on with that. I sincerely hope she comes through. When she does it will be open to negotiations- don’t accept her first offer

Yup he's got a chest infection, doctor started him on a 14 day course of anti b to try and stop it turning into pneumonia like last time. Also put his pain patch up by 50%. He's in lots of pain when he's coughing in his ribs, it's never ending. Feel punch drunk.

Hugs @notapizzaeater

@notapizzaeater I hope there is a quick response to the antibs

DH is responding to the anti b, thank god, though every time he coughs his ribs / back are in agony 😢

Just ordered an red light lamp to try and help with the pain. At this point would try anything ....

Sister not eating and drinking or taking medication. Really hard to get anything into her now. Tonight she is very drowsy and looks uncomfortable but it’s not clear with what. She’s got an anti sickness patch behind one ear but still vomited this morning. Two syringe drivers, one is causing skin irritation. Two nasty eye infections with eye drops. It’s agonising watching her. I couldn’t persuade her to eat or drink anything and her poor lips look cracked and dry but she doesn’t want to be touched or have glycerin soothing. She had quite bad kidney blood results and I’m sure not drinking isn’t helping which is all adding to the drowsiness. I feel exhausted and it’s bringing sitting with mum and watching her die a lingering death for months right back. That was 6 months ago. It feels like longer and I feel decades older.