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.

frik the hugest hugs to you my dear. Pretending is a good mechanism for appearing to cope, fake it til you make it etc. But the wee small hours is a different thing... I've spent a long time wondering where I should/could afford to live if DH dies. xxxx

@Frikonastick - it's bloody knackering being strong, I don't think I've managed a full nights sleep in 6 months

@yolofish did you move back into a shared bed ? We are talking about it but I'm almost nocturnal now

no nota I'm still n the spare room, partly because DD1 is often working nights and is still waiting for her driving test and once I've been out to pick her up I'm wide awake for the next couple of hours... doesnt seem fair to stumble in and clean my teeth and all that shit. At least this way I get my sleep and if DH is up 5 (!!) times a night then he doesnt worry about waking me. But its lonely...

@notapizzaeater yes, I think not getting enough sleep is a really big issue. I’m averaging 3/4 hours over the last 6 months. It’s not sustainable really. We are still in the same room as we don’t have a spare at the moment. It’s full to the ceiling because of having chopped the back of the house off to make an apartment to rent out so we can afford the mortgage. In order to empty the spare room, I have to empty the garage, I just haven’t been able to manage that yet.

Thanks for being kind both of you xxx

DH was at the kidney specialist yesterday, his function has improved to 25% by tweaking his meds - it's not been this high for over 15 years. Sadly he still can't have chemo / immunotherapy but for now the targeted therapy is holding it at bay.

Im getting much better at talking about it without crying now - only a few little tears instead of the slobbery drooling mess I was

I'm dreading [santa] - I cant stop thinking what if it's our last one

nota that's good news that his kidney function is better, let's hope the targeted therapy continues to do the trick. Last Christmas, DH gave me a framed copy of some Springsteen lyrics, which basically say "if I should fall behind, wait for me". That made me howl on Christmas Day... frik renovations on top of everything else, nightmare.

In other news, DH has chemo nails, and one of his toenails fell off completely yesterday. It is absolutely disgusting! not quite sure what, if anything, we should do about it - it is attached by a sliver (sorry, TMI)

Yuk yuk yuk, I don't do feet ......

sorry nota! I screamed at the sight of it...

oh god yes, christmas. i dont even know where to start with that. DD is really attached to xmas traditions, i dont know how im going to get through it. and mil is coming over for 2 months.

i just want to run away.

@yolofish no!!!!! oh my god, did you proper scream? i would have!!

I've made a decision at work and dropping after half term to three days a week, I was going round and round in circles about it until DH (who works from home 95% of his time) told me he was missing me during the day so I went into work and requested 3 days. Need to make the most of this time whilst he is still 'well'

nota that sounds like a good plan, it will give you more time to just 'be' rather than slaving 5 days a week. And hopefully also allow you both to relax a bit, and have time together/alone as you need.

frik I not only screamed out loud but jumped 3 foot backwards!!

Oncologist again tomorrow, seems to be routine procedure. DH is ok but really feeling tiredness - not sure if chemo-related or just that its been a very busy week.

Much love to all of you xx

How's everyone ?

We are back at the hospital Thursday with x rays just before - hate hate hate this disease.

DH slept for 15 hours yesterday 😥

First day at home with DH today, so we've had a chippy lunch and then off to the hospital for bloods and x rays ready for oncology on Thursday. 😊

yay for chips nota, always a cheering thing, esp with a jumbo sausage! DH always has cod but the DDs and I love a cheap chip shop sausage.

Not good news: poor DH had major bag explosion all over the kitchen floor yesterday. So awful for him, and his confidence. I must admit I threw his socks away (!) but can cope with the cleaning up, I just hate it for him.

Really good news: DD1 passed her driving test today, 1st time! and she drove herself to work at 4 and home again at 10, so means my last 3 years of being on call to pick her up are over, hoorah!

Whoop well done 👍 1st time as well 😍

Poor DH - it must really knock his confidence about going out - on a thread on Facebook people have got a Macmillan card about going to the loo urgently - I'm going to try and get one Thursday at oncology, if I can do you want me to get you one ?

cheers nota but dont worry - he has a radar key and we're going to get one of those sunflower lanyards.

He is on a FB colostomy page, and some of it is absolutely heartbreaking - people in US using duct tape and freezer bags because they cant afford proper bags, kids in Africa using tin cans...

there is a charity called Jacob's Well which does a lot of work in Africa around clean water etc, and they have a medical section which works with colostomy patients. DH has today parcelled up a batch of stuff he no longer needs which will be used for African patients. I need to check it out more but think we will be donating.

onto the second chemo toenail, so now he has 2 gone he is going to turn them into ear rings for me (bastard!!)

hope Thurs goes as well as poss nota and much love to others lurking.

Hello :). I was pointed this way to you all, do you mind if I join you?

DH was diagnosed with stage 4 prostate cancer last year, spread throughout his skeleton & 1 lymph node. The treatments have only worked for a short amount of time. He’s currently having 5 days of radiotherapy on a tumour that is compressing his spinal cord. We had had a few months of relative normality so this has been a horrible shock & plummeted me back into the original diagnosis despair.

It’s looking like it’s 2nd line chemo next. DH deals with it incredibly well really - me not so much!

We have 3 children together, 19, 16 & 9. DH has children from his first marriage that he is very close to too. Never a quiet household!

Anyway just wanted to swerve by & say hi to you all. So sorry that there are others going through this shitty of shit times.

Hi @Diangled welcome to the club none of us want to be in 🤬🤬🤬

Yup life's shit for us all - just differing amounts each day

Thank you notapizzaeater & for directing me this way.

4th radiotherapy blast for him today. No real side effects other than tiredness which is something. As he has a cord compression he is very wobbly on his feet & so I’ve taken time off work to drive him etc. Has just been a very stark reminder that this thing is very very real.

Onwards we go though

Hi,

I was also pointed to this thread.

Dh (39) has stage 4 bowel cancer diagnosed 7th April from a flex I sigmoidoscopy to confirm what they thought was diverticulitis. He had a huge operation on May 22nd, 10hrs in theatre took his tumour, appendix, peritoneum, omentum and had heated chemo (cytoreductive surgery with HiPec). A few weeks later he had a scan that showed mets to his lungs, liver, lymph nodes, chest wall & bone. He has a very aggressive form of bowel cancer that only 4% of people with bowel cancer have. Sadly his mutation is known not to respond to any treatment.

However they did try Capox which is oxaliplatin iv and capecitabine tablets for 2 weeks. His first one was ok, very painful going in and problems drinking/ holding cold things. The 2nd one was much worse so they decided to stop it, he had the capecitabine tablets but no iv. We have an appointment tomorrow with the oncologist to discuss if there is anything else we can try and sort out scan dates.

We were told due to the spread he probably only has 6months if the treatment didn't work or 18 months if it does slow things down.

Dh is doing well in himself, tired and pain but still doing ok for now.

welcome diangled and loubieloo - sorry you have to be here, but there are the loveliest people on this thread. I'm one of the lucky ones, DH diagnosed with stage 3 colorectal, major surgery in June appears to have done the trick and he's about to start cycle 3 of 8 adjuvant chemo (capicetabine) on Sat. The fear never goes away though.

DH had his last radiotherapy today for spinal cord compression. He had a CT scan this morning at a different hospital. I then had to take DS2 to his immunology appointment in a totally different city altogether! I. Am. Knackered. Looking forward to only doing school runs tomorrow. DH doing really well all things considered. He says he’s accepted that he’ll die very early he’d just like to enjoy what time he has left. I’m trying really hard not to be a snotty mess!
Loobie your poor DH & you. A shock stage 4 diagnosis is horrendous. DH’s diagnosis was by chance really & not at all what we were expecting to hear.

DSS & his GF are coming up for the weekend which will be lovely for us all. Having things to look forward to is a must isn’t it.

yolo a cancer diagnosis changes things forever I’m sure. I hope his chemo isn’t too hard for him.

Been at hospital today, they suggested reducing his meds to counteract his tiredness but DH refused that !

His x Ray was stable, so treatment staying the same and back in 4 weeks. They booking a ct scan for Jan, we talked about next steps and she was very fluffy about options 😥

hi @Diangled and @loubieloo4 welcome to a club no one wants to belong to unfortunately

my DH is doing ok, like your DH @loubieloo4 my DH has a rare form of his kidney cancer, and kidney cancer does not respond to chemo or radiation and is incurable. he is also on a targeted drug, but it seems to be working at the moment for which we are grateful. 18 months without spread is the hope.

im just putting one foot in front of the other and hoping that im not going in circles

shoulder bumps of solidarity to you all x