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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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notapizzaeater · 13/09/2019 22:55

Shit shit shit, hope it's just a procedural process

Frikonastick · 14/09/2019 08:25

Crossing fingers and toes xxx

notapizzaeater · 16/09/2019 08:18

@yolofish fingers crossed today x

yolofish · 16/09/2019 21:34

It's good news I guess - no sign of any cancer left, BUT that doesnt mean there isnt any (?!). So six more months of chemo to come as a kind of insurance policy. We are lucky in that it will be capicetabine in tablet form again, 5 days on 2 days off, weekly bloods. Better than IV chemo. Hopefully he will tolerate it ok, hard to tell because last time it was combined with daily radio for 5 weeks, and he did really well until the end of the course then spent pretty much 2 weeks in bed.

notapizzaeater · 16/09/2019 22:04

I suppose they ticking all the boxes and better safe than sorry 😐

Frikonastick · 16/09/2019 23:47

Hard to be pleased with more chemo and no reassurances yolo, I know, but here’s hoping your dh copes well with it and he remains clear for the foreseeable xxx

yolofish · 16/09/2019 23:57

yep, belt and braces approach I guess. Asked the consultant if he knew whether capicetabine is on the brexit shortage of meds list and he didnt know...

notapizzaeater · 22/09/2019 20:55

How are we all doing ?

I've been today and collected the photos we had done, I can't look at the one of DH and DS without crying 😭

yolofish · 23/09/2019 23:19

big hugs nota. DH given appt for tomorrow which neither of us can make, so he called and said "is it that film about capecitabine again? because we saw it in Feb and dont want to see it again" (polite version, otherwise it was 'I'm not watching that fucking shit again') and they said no worries, come on Weds instead for cancer nurse meeting, and then start chemo on Friday - not sure if we have to go back on Friday to pick up the tablets or if they will give them to us on Weds, hopefully they will just hand them over.

Frikonastick · 24/09/2019 08:09

Aw nota I hear you x a million

notapizzaeater · 29/09/2019 23:25

@yolofish - how did you get on at hospital ?

My DH is sleeping 14/16 hours a day at min and still exhausted 😩

yolofish · 30/09/2019 00:28

Oh nota that's hard, on you and him, and the kids.

Chemo started yesterday - it is 3 weeks on and one week off for next 6 months. Dose is much higher than before, it's 5 tablets twice a day rather than 2 twice a day. He is redoing our kitchen at the moment so am encouraging him to crack on before he gets ill/worn out! (that sounds harsh, but we've been without cupboard doors for about 18 months and it is doing my head in)

Frikonastick · 02/10/2019 00:00

my DH is away for a work conference. and all i can think is that this is what its going to be like, when hes gone. am really struggling at the moment.

yolofish · 02/10/2019 08:59

frik big hugs. can you find something nice to do, just for you?
DH bag exploded in the middle of the night - shit everywhere. Off to clean up shortly.

notapizzaeater · 02/10/2019 20:20

@Frikonastick is there anyone you can talk to ? Our local hospice do a family support drop in. I went when DH first diagnosed and sat and blubbed for 2 hours.

It's funny as I was away mon and Tuesday and was thinking I won't be able to do this soon 😥

@yolofish 😥😥😩😩😩.

yolofish · 09/10/2019 22:48

frik nota and everyone else, how are you all doing?

Oct 6 2018 was the last time I saw DM alive; Oct 7 was DH initial diagnosis - weird times. Oct 13 saw the arrival of Ddog who has saved my sanity. High level chemo now kicking in - 2.5 weeks done and DH is knackered and bag highly unpredictable. Only another 5.5 months of chemo to go, let's hope it's actually worth it.

notapizzaeater · 11/10/2019 00:08

We are ok, been to hospital today, bloods look ok, done an x Ray, back in a month unless anything changes. Also x rayed his back as he's had really bad back ache for a couple of weeks so just to Rule out anything dodgy.

notapizzaeater · 13/10/2019 10:23

I've just bought hubby a new Chelsea shirt (suppose someone has to support them!) and when he's put it on I can't believe how much more distended his tummy is, he's got a huge solid pot belly (that's been hidden to some degree under loose t shirts) - aargh not back at hospital for 4 weeks

Frikonastick · 13/10/2019 21:27

sorry i disappeared. DH scan came back as same as last time, so no progression which is good. but he has been so ill. he is very immunosuppressed now. have given up my consultancy to work full time as an employee, so am just shattered. luckily not new role exactly, but a shit ton more travelling. in my mind i sort of feel like this is like when you first take up some hard, menial task like digging up the garden. first your hands need to get rubbed raw, and blisters form and then rubbed raw and then blisters and then eventually the skin just gets hard and protective and doesnt hurt anymore. and you can just shovel soil for hour hours and hours.

yolofish · 16/10/2019 10:27

Flowers for you frik

notapizzaeater · 16/10/2019 19:35

It's shit isn't it, we need to take care of us as we are the ones who will be holding it all together

yolofish · 16/10/2019 20:58

nota yes, and I know my own position is a million times easier... but that doesnt mean its not shit.

For me, getting our new rescue dog last Oct was what saved my sanity. Love her to bits and she me... there is something very special about an animal that just adores you with no complications.

notapizzaeater · 16/10/2019 21:19

@yolofish it's not a competition - it's shit for all of us 🤬🤬🤔😥😥😥

Love having a pet - we've a dog and cat, total unconditional love with no questions

yolofish · 16/10/2019 21:27

nota but my DH should be OK and I know that is what you all are not dealing with...

one dog, 3 cats here, one of whom is attempting to make me make typos while purring very loudly! bless his little furry heart. xx

Frikonastick · 17/10/2019 22:27

i had a 3am crying jag. at work with eyes that look like two piss holes in the snow.

DH still off sick. i think this is what is setting me off. not so much that he is sick exactly, but that when he is sick at home, i cant pretend.

it would seem that i need periods when i can pretend or i go slightly mad

i wish i knew you all in real life