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.

I'm really struggling at the moment. Very weepy and feel so tired. Trying to battle on as DH'S solution is to ring my nurse and tell her. All I want to do is sit quietly and recover 😢

born have a supportive virtual handhold and from this random internet stranger. I hope you feel a bit better soon.

Yolo Thank you. Im Also visiting the old school I used to pick up from and seeing people I've not seen for 18 months. (Very clique) and Im Shaking like a leaf. I've had bloody cancer since I was last here and everyone has got on With their lives...... 😥

Hi all. Well, what a day yesterday was. Surgery eventually took 12 hours so he didnt even get on the ward til about 9.30. Been in this morning, he's as ok as can be expected - ie they are quite pleased with him but he's grumpy, tired and pissed off with being full of drains and drips. Havent heard from the surgeon yet, he was going to call me yesterday after the op, but to be fair the team had been working on DH since 9am so I think he deserved to go home and put his feet up! And I slept like an absolute log tonight, so feel a load better today.

Glad DH is recovering and you got a good nights sleep.

We back at hospital Monday and then telling DS Monday afternoon. 😭😭😩😩😩

Fantastic news yolo. All that waiting around creates so much tension - I bet you feel like you've run a marathon. Just make sure he gets all the proper pain relief now. And sleep all you want to.

thanks willow I especially appreciate you posting at this awful time for you all.
and nota, I dont know what to say... how old is DS?

Gosh yolo hope you still have some fingers left, how are you both today?

@yolofish ds is 16 with autism. I'm dreading it tbh.

Hope everyone else ok 👍

Thank goodness he came through ok yolo and decent sleep makes such a difference doesn’t it, hope that continues for you.

nota such a hard thing, hope it goes as well as possible

willow thinking of you still

both surgeons say they are 'pleased' and are even talking about him coming home this w/e. I think this is unlikely, he's still knackered, in pain, and still slightly urinary incontinent (altho that's improving). He also has a mild infection at stoma site so on IV antibs.

five I took DD1 to an interview today, usually an under 2 hour drive - it took 4.5 hours!! dreadful accident on motorway, so we had to head off cross country, with me 'driving it like I stole it'. luckily she could get in touch with the people and explain, and they were fine about her being 30 mins late - we had planned to have breakfast out and sit around waiting so she would be early... she thinks it went well.

nota I hope it went as well as it possibly could, and everything for you.

Glad DH doing well, whilst I hate hospitals they seem to have much better drugs so I'd advocate staying in if he's in pain.

Hope DD interview went ok ? Job? Uni ?

We've had a chest x Ray today which doesn't show much tbh but it looks less dense so doctor is pleased. Ct scan in 7 weeks when we will know more.

We cAme back and told DS who took it very well, asked a few questions and is now giggling away at. You tube video.

nota glad your DS seems ok - giggling is good! DD interview was for a ski season, she graduates this summer, got a job at home and wants to escape for a few months and loves skiing. also good news about 'less dense' (if only we could say that about our politicians!!)

It’s a bloody rollercoaster this trip !

Hubby had a blood test yesterday and his kidney function has dropped from 18% to 15% - retesting on Monday - I'm petrified they going to stop the treatment

nota yet more bloody waiting/limbo. Fingers xd for you all.

DH apparently coming home tomorrow! Stoma working, he seems to be getting to grips with changing the bag, and apparently we dont need district nurse as he can inject himself with clexane.

I am instructed to buy him some thongs , also wondering should I get some of those bedwetting mat things in case of night time leakage?

Nasty suspicion he is going to turn into some kind of diet zealot - not so much of a problem with me, but good luck to him with the DDs.

Wow that's quick.

I'd buy some bed mats and put them down. One of my friends had a stoma and she could never eat mushrooms, they come out like they go in apparently ......

Great news yolo

Any news on stopping treatment nota?

My DH has been really ill with flu. Has given us both a fright, and also made us worry about how it will be when he gets proper sick with his cancer, which will eventually happen.

I feel like, if we can just get two good years, I can cope. That feels manageable. Im sure it’s just an illusion, magical thinking on my part, but it’s how I feel.

His scan is on the 15th July, that’s when we will know if the meds are working.

No we've no news yet, DH is having a blood test on Monday so will see what they say. We seeing kidney specialist yesterday (hopefully not the one who missed it !)

Aargh, flu must have been so worrying. I dread DH getting normal illnesses as he's normally bad with them

frik that sounds scary.

DH home now - was all yes/no/yes this morning, but we eventually got home about 6ish. I would say his temper is uncertain, to say the least, but he has eaten and gone up for a shower and then to bed - he is exhausted. Got to go and wake him at 10 with some meds - on masses of antibs for next 7 days, plus doing his own clexane jabs, but no painkillers other than paracetamol. Just hope a night's decent sleep might make him less tetchy!

Yes, it’s been a big reality check. Like we need anymore of those! DH at docs now, he has 2 more days on this cycle of tablets so will get a weeks rest from them. Has started to develop worse side effects, skin rash being the most noticeable so the rest will be most welcome.

It’s made the limitations of our new living arrangements much more obvious, sharing one bathroom is tricky, he’s been so sick and DD and I are like, we need to wee and he is still throwing up what to do!!! I said we are going to have wee in the bushes in the garden like boys can

oh frik that is scary for you all, I am so sorry. (but an al fresco wee is always lovely IMO!)

We have had DH sorting out next 2 sets of colostomy bags at the kitchen table tonight (no, we werent eating!), and all sorts of rules he is imposing about use of downstairs loo... which is fair enough.

We wont know whether they got it all out for a while, but they seem to think more chemo will be necessary - just hoping it will be tablets at home again rather than IV at a hospital 45 mins away...

Yolo we are lucky -well, maybe that’s not the right word- but DH treatment is tablets at home as kidney cancer does not respond to chemo or radiation, so we are spared hospital infusion trips. Saying that, if the scan is not good the next option is immunotherapy and that is infused. Although it’s likely to be almost double in cost, so circa 10 thousand pounds a round. I’m not sure we can manage that

Hi y'all. Still lurking and thinking of you all. yolo I just wanted to say that MrW got a very smart man bag for all his colostomy stuff. It took everything and no-one knew what was inside (it was big enough for a laptop). People even complimented him on it. Might that help your DH get through these early stages?

thanks willow he has the manbag already! for emergencies pre surgery etc. district nurse came out today and changed the dressing on his drain, hoping that can come out on tuesday (very uncomfortable having the equivalent of a bic biro outer sticking out of an arse cheek). stoma nurse visiting mon, seeing surgeons on tues, then I think bloods and nurse appt to remove drain.

frik is there no way you can raise the money? when my friends daughter was dying of glioblastoma we raised £20k via justgiving, which was enough for 4 rounds of avastin, although she was only well enough for 3... I know it feels so awful, like begging.

Good to know yolo - about the bag I mean the biro image will stay with me for a while What would we do if we couldn't laugh at the bizarre craziness of it all occasionally.