Active discussions

Please or to access all these features

Talk
Life-limiting illness

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
Thread gallery
5
yolofish · 13/12/2019 21:09

nota everything xd that it went ok. I understand the dread of the PIP forms, but take it. Take everything you can possibly get along the way... no sense in being too proud to take it.

fuzzy welcome, we are a very supportive bunch on here. My DH is - thank god - not terminal, and sometimes I almost feel guilty about that... but t here are lovely people here.

Dh anticipating a bad night as bag has been inactive for at least 24 hours. I hope it's not too bad... I get 8 new rescue chickens tomorrow so we will have lovely fresh eggs again. it's the small things...

chinchin77 · 13/12/2019 21:13

What's a PIP form? 🙄

notapizzaeater · 15/12/2019 17:14

Personal independent payment (what was DLA) - you might qualify for it under normal rules, but def under 6. Month rule.

Friday was horrific. The halo was drilled into his skull and he had the treatment, 4 hours worth !

We left hospital @ 7pm, (after arriving 6.30am) after the treatment and got as far as the car park barrier before one of the screw holes started pumping so so much blood, I had to rush him back into hospital, couldn't find the right people before a ice man took us to a and e. We got seen and dealt with within minutes as blood was still pouring, was so so scary. Anyway we eventually got home at 10.30, knackered, emotional and stressed. Other than that we've had a lazy weekend, he's just had a headache that's been sorted with enough meds. Back tomorrow for round 2 !

Frikonastick · 15/12/2019 18:40

@notapizzaeater I know that words can’t even describe how traumatic it all is. I’m so sorry, and I understand, and I’m wishing you strength love and light.

@yolofish don’t feel bad about DH not being terminal, your journey is no less deserving of comfort and support, whatever form that takes and that we can offer, is gladly given.

yolofish · 15/12/2019 20:01

oh jesus nota how very scary and traumatic. sending you much love, and strength for tomorrow xx

notapizzaeater · 16/12/2019 15:03

Today's was no where near as bad thank god. 3 more treatments to go 🙄

It's a long long wait to see if what mutation the lung cancer has become to see if it's treatable. It's 10 working days so should be just before Xmas and I know the hospital won't have the drugs in stock (6k a month) so will be after Xmas - gulp !

@yolofish I'm chuffed your DH isn't terminal don't ever feel guilty for being here 😻

notapizzaeater · 16/12/2019 15:15

Here he is today ! A little less horrific that the screwed on halo Friday

notapizzaeater · 16/12/2019 15:50

Try again .....

The calm before the storm
yolofish · 16/12/2019 16:40

nota I'd love to say what a handsome chap...! fingers xd it does the trick

Diangled · 16/12/2019 19:00

Hello :), notapizzaeater what a torrid time you’re having. DH is also on the PIP less than 6 months rule & has been for 18 months! Fingers crossed that it’s for a lot longer for both of our husbands. I used to see people with the headgear when DH was having radiotherapy & thought you really wouldn’t want to be claustrophobic if you have to wear one!

Consultant appointment today & DH’s neutrophils are still low so hoping they go up for Thursday or chemo will be postponed. He’s coped really well with this cycle so hoping it goes ahead.

Love to all.

loubieloo4 · 18/12/2019 01:33

We have had a Christmas miracle, dh had a scan on 10th Dec. Some of the cancer has shrunk. Liver 8mm-3mm, lung 1.8mm - 1.2mm the rest is stable😊

Genuinely shocked, lost for words! We were expecting bad news. We saw the surgeon who did his operation in May today who told us the amazing news. We are seeing the oncologist later today to find out the exact bits and what the plan is now.

But right now I don't care 😉

Honeyroar · 18/12/2019 02:06

That’s wonderful news Loubieloo.

yolofish · 18/12/2019 08:40

oh loubieloo what absolutely wonderful, brilliant amazing news!

Diangled · 18/12/2019 10:57

What fabulous news! So very, very pleased for you Loobie.

notapizzaeater · 18/12/2019 13:59

That's amazing news xx

Frikonastick · 19/12/2019 21:37

Merry Christmas to you @loubieloo4 !!

chinchin77 · 20/12/2019 02:53

That's amazing news loubieloo! Is this from chemo?

loubieloo4 · 20/12/2019 11:19

@chinchin77

Yes he had 6 cycles of capox (one without the oxalipliatin and 3 reduced cycles!) still in shock

notapizzaeater · 22/12/2019 21:35

How are you all doing ?

We've been for a big family meal tonight which was lovely but DH made a few mistakes with words and trying to bag the presents up earlier was like herding cats, he kept putting stuff in the wrong bag and couldn't remember what he was doing.

I'm hoping it's just the side effects of the gamma knife and brain swelling, we back tomorrow for his last session.

yolofish · 23/12/2019 16:26

how's it going nota? hope the last session went well.

we seem to be manic - pub quiz last night, I got so pissed I fell over the dog on the way home (black dog/dark night, could have happened to a bishop etc). DH at his works lunch do today so I am on taxi duty. Small party here tomorrow night, supposed to be 5-7 but suspect it will go on a lot longer and have no idea who/how many coming. Then 8 here for Christmas Day and at least 2, poss 3, staying over to Boxing Day. It will be ok but exhausting but at least if we are at home DH has his home comforts, spare clothes/own bathroom in case of bag disaster etc. DD1 well away from it all chalet hosting in the French Alps and having a whale of a time (thank god, the last thing I need is child having problems in another country!!)

chinchin77 · 24/12/2019 05:30

Hello All

@yolofish you made me laugh, you sound very, very like me.

I'm in Australia, that's why I'm asleep when you aren't, although at the moment I'll possibly be awake when you are.

As you know I'm quite new to this awful way of life - DH just completed round three of chemo, he's awfully thin and losing weight. Has seen palliative care for pain management. It's just the heart breaking game - waiting for the PET scan and subsequent results.

It's Christmas Eve here and I'm going to have a few special 🍷's!!

yolofish · 24/12/2019 09:14

cheers chinchin may you have a happy and peaceful day Down Under and can push the worries aside for a little bit at least.

notapizzaeater · 25/12/2019 21:14

Hope you've all had a fab Xmas - we've had a lovely quiet chilled out one (family arrive tomorrow !)

@chinchin77 we describe it as a roller coaster, huge highs and lows and bugger all you can do to stop the ride.

chinchin77 · 26/12/2019 10:32

Thank you@notapizzaeater @yolofish
DH going to have port removed tomorrow and a waterproof one installed. Then Chemo on Monday. He showed me a pea like lump which has popped up under arm. It can't be good. Anyway, trying to enjoy last night at coast before heading home for the onslaught of hospital week.

Hope you all have had a lovely (as can be) festive time Wine

yolofish · 26/12/2019 22:45

chinchin I hope you are safe from fires etc? I have about 7 or 8 friends in Oz, thinking of you all.

We actually had a lovely time, but I am a broken woman. Xmas Eve party as expected went on - was lovely. Then 8 for Xmas Day, it was actually really nice but PIL and SIL staying in a cottage down the road arrived at 1 and did not leave until 11.30!! then stayed up with DD2 and niece and nephew playing Trivial Pursuit and the yes/no game til 1.30 - DH retired at 9pm. Then had DNs staying here overnight, the others appeared at 11.30 for a 'quick coffee' and left at 1.30 bearing loads of food. DD2 buggered off to her boyfriend's mid-morning. I was up at 7.30 and by 9.30 had run dishwasher twice and attempted to clear decks - an ongoing process. I have mostly been fuelled by alcohol and fags... but DH is ok which is the main thing. He has decided he can only drink 'good' wine from now on... personally I'd drink almost anything.

nota good luck with the family, I hope it's as good as it can be and DH is feeling ok.