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Original poster

The calm before the storm

999 replies

Willowkins · 02/06/2018 12:55

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.

OP posts:
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5
yolofish · 15/07/2019 21:43

oh five. no words, but thinking of you all xx

notapizzaeater · 15/07/2019 22:33

So very sorry to hear this 😭😭😢

Frikonastick · 16/07/2019 04:22

Well, we are back from our holiday, DH big scan was yesterday, we now wait a week for the results.

Trip was hard. Was very confronting how different everything is now. I know this is proper crazy but I think on some level I thought when we were on holiday everything would be ok? Like we could leave the cancer behind? Is there a roll eyes emoji, I need it.

DD was quite teary a lot of the time, because DH so tired and he is not looking well now.

Fuck I just want this all to stop.

Do any of you ever think it would be better if it were you? I feel like DH is better at life generally than me. He should be the one living on.

I’m sorry, I think I’m just very tired and it makes me say things that are probably better left in my mind only.

Im thinking of you all xxx

notapizzaeater · 16/07/2019 10:18

@Frikonastick I think we'd all just like this to stop. It's so bloody hard and there is no pot of gold at the end 😭

yolofish · 16/07/2019 18:00

frik I get you. I think in a way it IS easier to be the person with the disease, because you are the one that everyone focusses on.
We are so lucky, I know, along with DH surgery being successful I've had 2 melanomas, the first being a grade 3 which involved radical surgery so I guess I have something to compare.

Frikonastick · 16/07/2019 22:07

Thanks yolo and nota, I’m doing a bit better today. I’m on the scan roller coaster. Have taken the day off work, it’s school hold here and am going to spend the day with a friend and hopefully have some laughs.

I really wish I could drink. It just makes me very down though. Am seriously contemplating drugs!! Lol!!

notapizzaeater · 17/07/2019 08:35

Does the horrible fear get any better? We’d sort of got a new norm and I wasn’t crying each day (obv never in front of Steve). We have his first scan 31st July to check progression. My rational mind knows he’s got a cold at the moment and he always always gets a cough with a cold but in the cold of the night I’m crippled with fear the cough is linked to his cancer.

Not helped by him getting our son to do 'his' jobs, bin out etc .... and on prime day ordering a ring door bell and security camera so we are safe when he's not here.

yolofish · 17/07/2019 19:16

I dont know notapizza... what I do know is that serious cancer (ie the ones we are all dealing with, not the 'it's just a little blip and can be removed in 5 mins') changes lives, thought processes, attitudes...

I think for Steve, it's about putting things in place? and you couldnt deny him that opportunity if it helps him process what's happening. I admire his attitude actually, because it's positive action - maybe the only action he feels he can take? I dunno, these situations are where you wonder when you become a grown-up (and I dont know, but I do know the past 13 months have aged me enormously, not just for DH reasons) Wine etc

FiveGoMadInDorset · 17/07/2019 19:25

It’s really difficult isn’t it. It is changing lives, I have a 13 year old and 11 years old who will never get to do the grown up things with their dad. And every phone call I get when I am at work is a bit of an intake of breath.

We have had a few issues with the hospital bed and DH is getting a foam mattress tomorrow so hopefully he will be more comfortable, my manager has given me her brand new work laptop so I can work from home which means I am not using up annual leave. They have been amazing.

The most difficult bit is managing my DS’s disappointments that DH can’t attend any of his leavers things and he is taking it out on me which is a struggle but I can’t blame him

yolofish · 17/07/2019 21:12

I think the younger your children are, the harder it is, because they just don't have the same kind of understanding, and why should they - your mum and dad are there to do everything!

Mine are almost 23 and 20, in the last 13 months they have seen their grandma (my mum) go from pretty ok to a catastrophic fall and then decline on a daily basis over 5 months til her awful death. The beloved dog had to be pts, and then their father got a serious diagnosis. As young adults, they have coped bloody well and I am seriously proud of them - I dont know how well I would have coped at their age, but really none of us has a choice do we?

DD1 has her graduation ceremony on Friday, and really up until Monday of this week it was pretty much touch and go as to whether DH would make it, and she got pretty stroppy about it (not with him, with me). I think it all comes back to being the one who picks up the pieces.

Frikonastick · 19/07/2019 09:43

5 I hope your DH mattress got sorted, yolo YES to the aging!!!! Bloody hell I caught sight of myself this morning and thought fuckinghell that’s really bad!!

yolofish · 19/07/2019 21:26

Well ladies, DD1 is now officially a BA Hons, wore the robe and the hat, got the certificate etc. It was a lovely, but stressful and exhausting day. All 4 of us made it, and DH coped pretty well up until about 5pm, but unfortunately we had to stay longer because DD1 wasnt meeting her friends straight away, and I didnt feel we could just dump her on her own (I mean, we could have, but not exactly festive?!)

We eventually got home at 8.30pm, having left at 10am, dog mega-excited to see us (dogwalker had been in), DH has gone to bed and I am just kind of winding down with some (lots) wine.

Both DDs now out on the piss in London, god knows when we will see them both again, but both with different groups of friends so will hopefully be safe if very hungover.

A bit outing, but DD was at Greenwich, and the graduation ceremony was in the Old Royal Naval Chapel. Very beautiful, and also very special for me because my father was at the RNC in the late 40s/early 50s, and he died 8 weeks before she was born. Something very circular about that.

Frikonastick · 20/07/2019 07:11

How wonderful yolo, well done to you for getting everyone there xxx a very special occasion xxx

Original poster
Willowkins · 20/07/2019 11:07

Congratulations to your DD and so glad you could all be there - such a special milestone 🎓

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notapizzaeater · 20/07/2019 14:22

Sooo pleased you all made it, lots of lovely priceless memories made (and hopefully lots of pictures)

Frikonastick · 23/07/2019 08:23

Well, DH results are in and it’s good news. His cancer is stable. So that means the meds are working. Doc says he should achieve 2 years. It’s better than I was expecting so I feel very relieved, like a terrible deadline has been eased

yolofish · 23/07/2019 08:26

wonderful news frik! gives you all a chance to take a breather xx

notapizzaeater · 23/07/2019 10:21

That's brilliant news, I'd be happy with stable !

Original poster
Willowkins · 23/07/2019 18:52

Fab news Frik. I'm sure the sun is shining a bit brighter this NZ morning. Smile

OP posts:
FiveGoMadInDorset · 23/07/2019 20:39

That’s brilliant news Frik

FiveGoMadInDorset · 23/07/2019 20:47

DH has lost so much weight over the past fortnight. I feel like I am spending a fortune on food to try and get him to eat. Luckily we have a Cook outlet near us so tonight he has had liver and bacon, mashed potato and chocolate ice cream. He is struggling to clear his lungs and that tries him out so much. District nurses are back tomorrow to escape festival traffic which brings us to a standstill this weekend and he has oromorph which helps him sleep last night which meant that I got a full nights sleep

notapizzaeater · 23/07/2019 22:46

@FiveGoMadInDorset I've turned onto nigella ! His appetite has reduced hugely - I'm cooking his fav food, serving ice cream with every meal, making cakes basically anyway I can get calories into him. He has some weight to loose but I'd rather he kept it on as long as possible.

Glad you got some sleep, will you get to the festival ?

We've had a 29 page report from our hospital explaining how the NHS did indeed miss his cancer. No consolation at all 👿👿👿

notapizzaeater · 23/07/2019 22:47

Would a nebuliser help him clear his lungs ? I couldn't after my surgery but 10 mins on one and I was much better

FiveGoMadInDorset · 26/07/2019 19:18

So rather suddenly we are in hospital waiting for transport to the hospice, consultant oncologist is talking days

So there we are

pollyannaperspective · 26/07/2019 20:24

Have only very recently read this thread. Five may those days be peaceful for you, DH, children and family.