The calm before the storm

[Willowkins]

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

Can I please come and join you all on the journey nobody wants to be on? I’ve been reading for a while.

My husband has terminal thyroid cancer. It’s rare and aggressive and he has mets to his neck lymph glands, lungs, rib bones, cervical & lower spine and liver. We don’t know how long he has, he didn’t want to know. I really struggle with that.

He started a drug to prolong his life last August. After only 5 months of it keeping things stable his tumors have started growing again, mainly the one in his liver. He’s so tired, losing weight, feeling/being sick as well as other side effects from the drugs he’s taking but has still managed to keep going to work (office).

We have a 5 yr old who knows his Daddy is very poorly but not much more beyond that. He is such a lovely, happy little boy and I know I need to start preparing him for what’s to come. I just don’t know where to start.

I’m also feeling like the worst Mum ever today because I got cross and shouted this morning before he went to school. He was absolutely fine when I left him but I feel really awful that I got cross about him not getting himself dressed. To be fair, he’s like that most mornings but today it just hit a nerve. In the grand scheme of things it’s seems so trivial when I write it down but I’ve spent most of the morning in tears thinking about it.

My husband has counseling and therapies at our local hospice and they are trying to sort an appointment for us to speak to a family worker with regards explaining everything to our son. I don’t really talk to anyone about how I’m feeling because I try to protect everyone close to us. I had some sessions with a counselor last year but I didn’t really connect with her and didn’t feel like I was benefiting from it. It was also costing me £65 per 50min session so I stopped going. She did say I had anticipatory grief which I think is right but didn’t really give any advice or strategies for coping with it. I feel like I want to ring the Macmillan helpline but I don’t even know what I want to say/ask. I know I’ll cry and I’m not sure I’ll be able to stop.

Thank you so much for listening to my ramblings. I’m going to distract myself now until school run time by cleaning out the kitchen cupboards 😕

Hello teddy and lee.

I'm sorry you have to join us (I am currently here under false pretences as DH 'should' be OK, but the fear never goes away).

Physical distraction ie cleaning something has always helped me. Or even better, the garden.

Sending you both love.

@LeeHarper5 welcome, pull a chair up and rant away.

I've just ordered a book about being sad. Once put son got through his GCSEs we sat him down and told him. We keep telling him what's happening but it's hard as DH is so well ! But I know it will be a quick decline so I need him prepared (he has ASD)

DH is feeling sick today and slept for 16 out of the last 24 hours - am hoping it's a big but last time he was feeling sick was the start of the brain mets

I'm getting g the previous one deleted as it's got my details on ....

Thanks for the welcome to the club you don't want to be in!

@LeeHarper5 - it's so hard to know what to say to the kids isn't it? Ours are older - 13, 11 and 9. We've been honest to a point but none of them have ever asked the big question so we haven't broached it. We'll have to see what Thursday brings.

We've told ours dad is terminal but he's come home from college tonight and he's seen the counsellor at college and he thinks he shouldn't sit his exams till dad is better - so we've again explained that dad is terminal and he isn't going to get better. It's so hard, he just doesn't get it as 'ill' people die, not healthy looking people.

I am so sorry nota and all.

When DH was diagnosed, my mother was dying, and DD1 going through a horrendous time at uni (think switching from a practical project to writing a 10,000 word dissertation, and she is dyslexic). Meanwhile DD2 living in a really bitchy student house.

Even at then 22ish and 20ish, it was a big deal for them while he had chemo/radio and then radical surgery and now more chemo.

I dont know how you tell younger children, I suspect its a case of actual facts, as gently put as you can manage, and to the level they can grasp at the time - no point saying daddy is going to die tomorrow if he might have 9 months? sorry, that sounds so blunt. But I think perhaps a case of what they need to know when they need ot know it? xxx

That's been our approach thus far. We were told 5-7 years a year ago. But this is a recurrence after brain surgery to remove original tumour. So the girls knew it was back, knew all about the treatment. We were honest about side effects. And we've gone with the party line of "we trust the doctors to help us, they know more than us" when asked "what happens if it grows back". I sometimes wonder if the eldest should know a bit more, but honestly- I'm not sure knowing the prognosis would help.

whostolemy (which I keep mentally reading as colostomy - sorry!)

I think you've done the right thing. Unless there are direct questions I wouldnt go there at the moment, I would just let things ride with the DC until it becomes obvious that things are getting worse. I think 'knowing the prognosis' might make it harder for them, as they will worry about the time frame.

May I join you all for a cuppa? My lovely Mum was diagnosed with terminal breast cancer with bone, lung mets and extensive lymph node calcification last April, given a time line of months not years, so the clock is truly ticking.

She has been on letrozole since April and did really well all things considered until early December but has been slipping slowly down hill since.

I am lucky to have a supportive husband, 3 grown up kids who take everything in their stride and a toddler who keeps us all grounded but damned is life hard right now.
I am spending until lunch time every day at my parents helping dad with her personal care and doing basic housework to ease the load for him, then home to sort our own lives out.

Last week she was diagnosed with what is almost full body cellulitis, her poor skin is so tender and the antibiotics aren't really touching it. Plus getting her to take her meds is a constant battle because she doesn't like them. Getting her out if bed is hard work, everything seems so difficult for her due to no muscle tone, breathlessness, pain etc. She does have medication for everything but just isn't very robust.

I am beyond tired at the moment but feel guilty for moaning even anonymously on here.

Anyway tea anybody? Cupcake? Gentle hugs all round for anyone who needs one.

Welcome , no sugar in my tea !

We've a date for the procedure - 2nd March so results 2 weeks after (though we will know on the 5th how much it has grown)

DS and I had a chat and a cry this morning when i explained that DH won't be cured ......

In other news DH woke up this morning with a huge lump just below his knee, almost egg siZed - phoned they ward and they wanted a doctor to see him so got into GP and she thinks it's a cyst - we've took a photo with ruler alongside - if it gets bigger we need to go back

@notapizzaeater I think the hardest thing is always telling the kids. It was with my own diagnosis (and mine was only stg 2) and with their grandmother more so. I'm glad you have talked and cried, I think you just have to take each step together and answer his questions as they come. I have 3 older DC and 1 toddler, out of the eldest I have one who wants every fact, every detail, and is very practical, one who just rolls with whatever the day needs but likes to be kept loosely informed and one who sticks her head in the sand and pretends it isn't happening.

Good luck with the procedure on the 2nd. Hopefully the eggknee hasn't grown again and isn't to painful.

It's chucking it down here, need my welly boots to go out today. But little legs will be thrilled!

Thinking of you all and sending gentle hugs to all

minx I am so sorry for your poor mum, that sounds awful. Cellulitis is so painful...

DH finishes what is supposed to be penultimate course of chemo tomorow, then a week off and another three weeks on.

Next stage is colonopy via his stoma (which sounds unpleasant) to a) check status and b) remove polyps found at the start of all this. Neither of us understand why they didnt remove polyps during radical surgery to remove lower bowel and rectum.

In the meantime, DD2 who is commuting to London daily for her uni placement year is getting really stressed about possibly bringing coronavirus back to her immunosuppressed dad. I'm taking a waiting and watching stance, if it gets worse in London then will support her working from home (if allowed) or working with me.

Welcome to everyone who has found the worst place to be. Maybe we should start a bar like the cancer thread in health? Mine will be a double vodka & coke, with umpteen shots to go with it!

I've just ranted on my own thread, so will try not to here. DH's life insurance have said they won't payout until they see progression of disease 🤬 we had plans to make some wonderful memories and for dh to enjoy his time off chemo.

It's not all bad, centre parts was amazing, so much more then we expected, however, dh did rest and sleep a lot and only managed the pool once due to the neuropathy in his hands and feet.

Then we had a very last minute house party for our dds 21st birthday (a milestone we didn't think he would meet!)

Still in limbo, waiting for another scan, and see if the life insurance idiots will finally get themselves sorted, I have complained and I will be taking it further. Scan 4th March so let's wait and see again. For now love and hugs to you all and my favourite picture even though it breaks my heart from the party. They were dancing to passenger, never let her go 😭😭😭

Hello all. I've realised I've been using 2 names, I'll stick with this one!

We had appointment with DH's oncologist on Thursday who said he thinks all is stable but we need to wait for official confirmation as he didn't have the official report. Then this morning we received a letter asking him for an MRI on Wednesday. He thinks it's a mistake, I'm not so sure...

Hope you're all safe and warm.

We are having a lazy day binge watching The Stranger

DH is really down at the min but refusing to do anything about it 😥

@notapizzaeater, is rotten weather where you are? I've found dm tends to get terribly lethargic and just blah about everything on darker days. Nothing on this earth will interest or motivate her at all.

The brood and I have been out to play live cluedo in our nearest town which provided a much needed change of scenery and some (very) fresh air

beautiful photo loubieloo one to treasure forever.

nota how is the egg on the knee?

found out yesterday that the 44 year old son of one of my mum's friends has glioblastoma, stage 4. he has 3 kids and an abusive wife...

filthy weather here, stay safe everyone

Fucking exploding colostomy bags, fucking chemo, fuck fuck fuck.

Yes, I know a bag for life is better than the alternative, but when you watch your DH cry because there's a shit explosion, fuck me it's hard.

willowkins if you still read this thread, I think of you and your DH and family very often.

That's shit ! Literally 😭😥. So degrading for him

We're at center parcs - DH been telling my brother about it, he's still in denial. DS just told us not to be too frisky ! Chance would be a fine thing 😍😍

@yolofish hugs for you 💜 @notapizzaeater we didn't manage to get frisky at center parcs, hope you better luck!

hi everyone.

do any of you feel like you are going mad? slowly steadily losing your mind?

All the bloody time @Frikonastick