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

Hello all,
I found this thread in a search and I think this is exactly the group I was looking for.
My husband was diagnosed with stage 4 colorectal cancer 2 months ago and had a pretty rough start spending a month in hospital before they could get him well enough to start chemo which is now hopefully shrinking/stabilising the cancer a bit. We've got two sons aged 11 and 6 and all our family live interstate.
I feel like I'm living in a slow-mo train crash.

So sorry that we are all in this situation, but so glad to meet you.

Hugs Willowkins, the paperwork and sorting us already something I'm dreading. Considering getting a start on it now while DH is around to answer questions, if any of us have the energy.

Good luck to you!

@ClashCityRocker
So sorry, sending you comfort, strength, solidarity. I'm just over a year down the road from you,

@Spoon27, hi there. I’m sorry you are going through this, it’s a bloody hard row to hoe that’s for sure. My DH has his next scan on the 12th, we suspect they are going to tell us he has about 6 months left. Still can’t help hoping against hope that we are wrong, they will be like, good news! Everything has shrunk! All is well!

It’s torturous. But without hope, how do we go on?

Sending you all the strength

Sending you all the strength as well frikonastick. Best wishes for the scan! It's such a hard rollercoaster of trying to keep your hopes up, but not too much so the disappointment isn't too harsh.

Hi Spoon glad you have found your people here in this thread. Do you live in the US?

Hello All. I'm spending a few days in Cornwall with DD. It's been nearly 3 years since I was last here.

Hi @Spoon27 welcome.

My dh 40 has stage 4 bowel (colorectal) cancer, he was given 12 months to live 2 and a half years ago!

@Willowkins I love Cornwall have a lovely time.

@Frikonastick any news from the scan?

@notapizzaeater good luck with sorting all of the paperwork, it must be daunting/frustrating. I'm shit and would probably just bin most of it!

So dh is now on a chemo call Folfiri, he had his 2nd round last week. The side effects are shit and he's been more sick since being on this than any other time 😡 he feels sick, has diarrhoea, his hair is falling out (although his pubes fell out in one go last week 🤨) he has inflammation in his nose and throat..... it's really rough. I'm not sure it's worth it if I'm honest, that must sound awful 😞 he's not living a life right now and to top it off, I think he has steroid induced diabetes. It really is death by a thousand cuts. He even looks like a 'cancer' patient now. He's done so well for so long, I can see his mental Heath is struggling now too. I don't know if he's just resigned to feeling like shit for the foreseeable or that the only way out is for him to die 😭 how do you even get your head around that?

Anyway I'm moaning again sorry, if only we could have something to aim for or to look forward too........

@loubieloo4 results on the 17th. I am exactly where you are, DH now sick all the time, a shadow of his former self and also now looks like he has cancer. His mental health has suddenly taken a nosedive, because he feels so rotten all the time. He’s sleeping a lot. And he’s not even on any treatment at the moment. We are waiting to find out if there is a last ditch option and whether we will be able to afford it, as he is going to have to stop work in the next couple of weeks. He’s already half day now.

God I wish I knew you all in real life.

@Willowkins thanks. No I'm actually I'm Australia. I visited Cornwall once 20 years ago, loved it. Hope you have a fantastic time.

@loubieloo4 Hugs. I don't know how you can all keep going on this path for so long. It's good to have the extra time, but also so hard.
My DH is having his 4th chemo now (FOLFOX + Bevacizumab). He looked like he had cancer before they started the treatment. He lost 50kgs over 6 months, developed massive ascites and oedema up his legs past his waist so he was too swollen to use the toilet. He was sleeping all the time, but also never getting real sleep. The docs said things would go very quickly if the treatment didn't work. But thankfully between the chemo and all the other treatments, his symptoms have greatly reduced and he's looking and feeing better (but still very far from normal). We'll find out in a couple of weeks if the chemo is actually impacting the tumours.
I really don't know how we could do this for 2+ years (physically, emotionally, financially...). But oh well. We'll sort each step out as we come to it.
I'm so impressed by you all making it this far.
And so sorry you're going through these rough times now.

@Frikonastick keeping everything crossed for you for next week

@Spoon27 I’m in NZ

Greetings from across the water!

Hello All

Checking in - welcome @Spoon27 I'm in Australia too if you need a chat - anytime.

@Frikonastick @loubieloo4 god I'm sorry - I've been there and it's just traumatic to see the physical and mental effect - hugs to you both

@Willowkins - happy holidays, I love cornwall.

Thinking of you all 💐

Just got a form back from a nurse to support a claim for financial support from the government and she ticked the 'terminal - not expected to live 3 months' box.
Trying not to let it get to me.
We've got oncology review on Monday next week and they will have much more knowledgeable info.

I hate the prognosis part. I desperately want an accurate idea of the timeline so we can plan things like work, insurance claims etc. But I know that there is no real accuracy.
I also desperately want as long as possible, while a part of me also just wants to get it over with and not have this traumatic time extended.
I guess it's just another case of day-by-day...

Hugs all round. I hope you are travelling ok.
And thanks @chinchin77! Good to know. I read back through some of these posts. Very sorry for your loss. Very kind of you to come back and check on us here and offer support. Take care.

Hi chinchin I was thinking of you being in Australia and wondered if you still checked in from time to time.

I remember the UK equivalent of that form Spoon. We got it pretty quickly after diagnosis but MrW had 2½ years after that. I think what you're saying is that you'd like some sort of control back. We all understand that.

@Spoon27 we had the DS1500 form, DH survived for another 14 months.

Thank you @Willowkins and @notapizzaeater! Yes some control is exactly what I'm after.

In a bizarre turn of events, I just received a big professional grant which will ensure I have a job for the next 4 years. Good news is really bizarre at the moment. I'm incredibly relieved that I won't be out of a job next year. But also worried about my capacity to do this work at the moment. And now my messages are filled with a weird mix of people congratulating me for the grant or offering me sympathy for my husband.

It’s been a horrendous few days. DH had his CT scan on Friday, got home and then an hour later the hospital called to say they found a tumour in his spine and he had to go for an mri on Monday. Monday he had his mri and they admitted him straight after as mri showed spine cord compression. Two days of and 12 surgical consultations later, they decide surgery too risky so starting palliative radiotherapy tomorrow. It’s also in his liver and ribs.

And because life isn’t fucked up enough, we go into level 4 lockdown here at midnight. Level 4 being total shutdown

@Frikonastick this is awful news, I had much the same - the cancer was just spreading and we were in lockdown. I'm here. 💐

Oh no so sorry to hear @frikonastick. That is all just horrendous. I hope the radiotherapy provides some comfort.
Hugs
We got DHs diagnosis in lockdown so I couldn't visit him in hospital. Lockdowns suck. I hope you can still visit and manage to get some other support for you as well.
I'm here and in a similar time zone if you want to talk.

@Frikonastick (((hugs from afar)))

DH had pallative radiation to zap growths on his ribs, tbh that was the easiest (and pain free ) treatment he had.

Lockdown is a twat ! We missed so much stuff we wanted to do/ see.

Hugs @Frikonastick I hope the radiation is helping.
Gah what a difference a couple of days makes. DH was having a really good fews days until yesterday morning when his pain massively increased. Turns out his bowel has perforated and things are not great. Fingers crossed surgery goes well.

@Spoon27 - hope DH is ok, I likened it to death by a thousand cuts, it's a snowball effect, one thing causes another, drugs interact with drugs, it's a just a bloody nightmare !

Thanks @notapizzaeater. It's definitely a snowball effect. Ridiculous thing is that the doctor said it was likely that the chemo was actually working to shrink the tumours and it was the shrinking of the tumour which caused the perforation. But the chemo drugs make the surgery more risky. Everything interacts and not in a good way at the moment.

Ok, the surgeon said it would likely take 1 to 4 hours and I've patiently waited for 4 hours and 15 minutes. Starting to get a bit more anxious now.

@Spoon27 the waiting is the worse time, I remember my son having a GA for a procedure, they overran by about 45 mins, they where the longest 45 mins of my life ! I wish they'd added an hour onto the time when they told me .....

Hope you've heard now

Spoon also, they never tell you this but you need to add on prep and recovery time.