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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 · 01/07/2019 23:35

I know - it's bloody hard esp as he looks so bloody healthy. If he had any outward signs we could 'see' if it's making a difference !

Frikonastick · 02/07/2019 09:02

Yolo I’m sorry you are having a hard time at the moment, I hear everything you’re saying, it’s like, what’s in it for you?!?! Today I got home and just climbed into bed. Still in my clothes. I just need to not be in charge for 5 bloody minutes.

yolofish · 02/07/2019 22:19

frik bugger the jamas and the teeth cleaning, just grab some clear space!

DH finally got some gabapentin today (weird drug dosage regime, and used for epilepsy, I guess because deals with nerves?) and kicked some ass with the DDs which has paid off in the last 4 hours, long may it last.

Frikonastick · 03/07/2019 10:35

I’m just white knuckling it until our holiday, we fly out on Sunday for a week and it’s the only thing that’s keeping me moving.

Today I had a full blown panic attack before getting in the shower because I couldn’t remember where I had put the soap after doing the shopping. The dog was most bemused by me lying on the bathroom floor breathing like a steam train!

I think I’m right at my limit of endurance.

Still, I managed to get through it, went to work and carried on. I think from the outside I look normal.

Did you or DH tell the kids off? I find DD is always more effected by DH being cross! Hope someone at least made you a cup of tea xxx

yolofish · 03/07/2019 14:52

frik hope you're feeling better now? kids are actaully doing what they said they'd do today, DH waiting for gabapentin to kick in but I think it may be a couple of days yet.

notapizzaeater · 03/07/2019 15:18

We just about to be prescribed garbupentin - hope it works, seeing DH in pain is horrid ! I want to rattle the doctor and point out he's going to die sooner rather than later and FFS give him some proper drugs.... and breath !

Going anywhere nice @Frikonastick

Glad kids listening for hubby @yolofish - in our house it's me DS listens to!

yolofish · 03/07/2019 17:51

managed to carve out several hours just for me tomorrow, cant wait. Taking DD1 to work, getting on a train to London, then have about 3 hours in which I will lunch and read a book ON MY OWN, then meet friends - we are going to a House of Lords reception for my charity, which is very exciting, but omg the thought of 3 hours where no one knows where I am or what I am doing...!

gabapentin supposed to have side effect of drowsiness, may be starting to work as DH been in bed since 2pm. drowsiness is ok, I am a great believer in sleep as a healer, and a way to reduce pain, or at least when you wake up you are not quite so tired and therefore more able to deal (maybe?)

notapizzaeater · 03/07/2019 18:29

@yolofish sounds like a perfect day - enjoy every minute of it.

FiveGoMadInDorset · 03/07/2019 20:54

@yolofish just caught up with the thread, such amazing news, I bet sometimes you can’t take it in.

frik I am so sorry about the funding, I know the NHS can be shit at times but they have been amazing with DH

It’s been a tough couple of weeks settling down to the next phase. DH was on steroids but they made him feel worse so he stopped. His breathing is not good and he is coughing a lot and not all down to the cats. I keep muttering about stanna stairlifts and scooters but declines. He is going o bed early but at the moment he gets up to take DS to school, only two more weeks of that though. His mood seems to be better though.

I did go out and got pissed with my friend last week, she lost her daughter when she was 11 and her Dad a year earlier, she understands.

I have ended up doing pretty much everything now, it is a weird feeling being almost a lone parent in terms of household when there is someone else in the house.

Take care of yourselves

Frikonastick · 03/07/2019 21:20

Yolo, I will be enjoying your lunch and book read vicariously! I hope you have a super time.

Nota, right?! Is it not bad enough already, just give your poor DH the drugs! I do sometimes think that the doctors are removed from it enough to sometimes forget that this a human being, a PERSON not a patient. If you see what I mean, it can be so frustrating.

Five, good to hear you had a night out, I hope you got to feel like you for a bit and glad your DH mood has improved. I find my ability to cope is directly affected by my DH mood!

yolofish · 06/07/2019 20:42

hi all. hope things are as good as they possibly can be.

My day out was not as relaxing as it could have been, due to train fuck ups and London was so bloody hot! but at least it was a day out and I couldnt do anything about anyones problems at home so in that way it was an escape.

Gabapentin still not kicked in for DH, in fact he says pain is getting worse. Offered to call 111 today, knowing they would say go and see OOH doc, but he refused on grounds of sitting in car, sitting around in hospital, sitting in car on way home again. Basically, he cannot sit or stand for longer than 20 mins, and even lying in bed he is uncomfortable. Cocodamol/tramadol contraindicated with gabapentin, so going to call GP and stoma nurse on Monday to see what else can be done. (Did you know, gabapentin is one of the most expensive drugs the NHS prescribes? no wonder gp was reluctant even though it was what consultant advised!)

Original poster
Willowkins · 07/07/2019 12:12

My DH was on Oxycodone - 10 times as powerful as morphine - and that worked. It can be addictive (not for DH fortunately) so they don't like to give it but given the need to stand up, sir down and walk around after an op of this sort, I think sorting out the pain relief should be a priority. I hope this helps you to get the help you need.

OP posts:
yolofish · 07/07/2019 18:33

thank you willowkins that's good to know. how are you and the younger willows doing? I can only imagine what a strange, hard time it must be, but from my own experience of loss, interspersed with completely ridiculous moments and times of laughter too Flowers

FiveGoMadInDorset · 07/07/2019 20:16

@yolo I am sorry you didn’t have a day as planned and it can be exhausting fighting for what your DH needs

notapizzaeater · 07/07/2019 20:26

Hope your DH is feeling better soon. Doctor didn't mention contra indicators with tramadol (DH takes this every day) will check if he ever gets his prescription!

Sorry your day wasn't as good as it could have been - but who boo, you escaped !

Original poster
Willowkins · 07/07/2019 20:26

Just to add, they might be worried about constipation so may need some extra Movicol to counterbalance that.
It's been a lazy day for us. I did manage to make smoothies but really I am not great in the kitchen and it didn't taste like MrW's but there you are.

OP posts:
notapizzaeater · 07/07/2019 22:05

Yummy smoothies 😊 5 a day in one glass ....

yolofish · 08/07/2019 18:36

he's got naproxen now, to go alongside the gabapentin - hopefully the combo will work.

notapizza is it your DH scan this week?

willow my smoothies would have been crap too x

notapizzaeater · 08/07/2019 20:08

No, nothing this week, we've escaped to center parcs 😍😍. (Mutters that we were all supposed to be going to Mexico tomorrow for 2 weeks!)

Scan is 31st July, results couple of weeks after

FiveGoMadInDorset · 12/07/2019 20:44

So we have got through another week, hows it been for everyone? There has been a marked decline in DH and my sister has managed to convince him that a wheelchair is a good option otherwise he would be stuck inside as he can’t walk any where now. I am not sure we are going to make our holiday in August. His brother and his family have been down this week, not staying, but I am having to cope with them as well, my sister is being fabulous as is work, but I don’t think it’s going to be long now 😢

notapizzaeater · 12/07/2019 21:00

@FiveGoMadInDorset aww I'm so sorry to hear that.

We've had a great week making lots of memories at center parcs - starting to get scan anxiety now, .....

We've a very poorly doggy here, he's knackered his crucial ligament - he's been on meds for 2 weeks but not made a difference, he's 11 and hubby and son love him so so much. Off to see the senior vet on Tuesday to see what options we have 😭

yolofish · 12/07/2019 21:37

five sending you a big hug over the ether, I am so sorry to hear that.

also big love to your ddog notapizza, our dogs are so precious and good for our mental health.

DH now on naproxen or something, had 2 good days on it , but bad today. Next crisis is that DD1's graduation is a week today and I am trying to manage her expectations that DH will be there. Obvs, he desperately wants to, but it's going to be a bloody long day, minimum 2 hours journey from home, and I am just not sure that he will be physically up to it - or how we handle it if he needs to just collapse somewhere mid graduation.

FiveGoMadInDorset · 12/07/2019 21:46

@notapizzaeater I have had two dogs with cruciate ligament repairs, the first was a complete snap and the second was physiological, both were younger than yours but once done had no problems with them again

Original poster
Willowkins · 13/07/2019 11:35

Five I don't know how but somehow you will get through this. Sending you lots of love.

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FiveGoMadInDorset · 15/07/2019 18:58

DNR is now in place as is care package through District Nurses, GP has been up and has sorted medication that DH will need.