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.

yolo maybe? I guess we will cross that bridge when we come to it. I can’t even bring myself to read the stories on there. I don’t know how I would go on it myself. But, I’m doing all sorts of things I never thought I would, so!

Frik sorry if you've already tried this or it's not possible but are there any drug trials in your area? I know they have them in Sydney (hangs head in shame at woeful knowledge of geography)

DH knob quotient pretty high at the moment. He gets so ANGRY at the stupidest little things, and is almost bullying me... I know, I know, bite my lip, turn away, defuse etc etc, try and keep the peace. But fuck me, it's hard work!

Stay strong yolo you've got this. Stop me if I've said this before, but steroids (dexamethazone) can cancel out a person's filter. In MrW's case, he would say the strangest things. Could it be that?
In any case, please create some space for yourself and fill it with treats to cancel out the negativity

Pain and being scared can change a person, just keep a low profile and breath. It's ok to still be angry / annoyed etc with them. Just because he's ill doesn't give him a free pass.

Are you making some time for you ?

I've booked a week at center parcs today, not quite the fortnight in Mexico we where supposed to be on but hey ho, hopefully make lots of memories whilst he's still 'ok'.

Thanks for thinking of it willow unfortunately here in nz there are no trials for kidney cancer, and it’s not feasible to move to aus or the us where there are quite a few. Brazil too actually. Although we totally would if any of the trials were for something new and potentially life saving, but currently all the trials are for existing meds, just in various permutations. And I’m not prepared to run the risk of DH getting the placebo!

yolo I feel for you so, there are no easy routes are there, I’ve taken to having a quiet drink (just the one) while I’m making dinner. It’s my gold medal for getting through the bloody day xxx

When are you off on hold nota?

Hols!! Bloody autocorrect

Aargh, that's a bugger there's no trials. We can't do trails either because of DH history 😭

We off 8th July for a week - DH is still well so booked lots of dad / son bonding things to do.

Today has been GOOD. Bic biro drain fell out of DH arse cheek this morning, no worries as stoma nurse was visiting anyway. so I stuck a dressing on it and she took out the dangly stitch later ... we see the consultants tomorrow no idea if they will have lab results but everyone pleased with his progress. Stoma nurse said he has "a perfect bottom and a perfect stoma" - he now got very inflated head!!

(I know more about DH arse than I ever wanted to, but removal of the anus is a fascinating thing - cut from the bum crack to just above the balls, no wonder it has been uncomfortable!)

AND DD1 got a 2.1 with honours in her degree!! which is a bloody achievement given what she has gone through in last 12 months - illness/death of her grandma, death of our dog, her father has cancer. Very proud, and we are drinking fizz which I will regret in the morning.

Lurked on this thread, really sorry to hear your news, it just isn't fair, lots of love to your family @Willowkins

@Frikonastick I am in NZ, you have my sympathies for not being funded for treatment. PHARMAC is a fucking disgrace (we are currently fighting PHARMAC so they don't stop funding my dd's epilepsy medication) but especially when it comes to cancer treatment having had a relative go through the system, it just isn't fair when the drugs are available in other countries. I really wish your family the best

@yolofish -- I was given a bic to sign in at a hotel and all I could"d think about was it sticking out of a bum !

Whoop for your DD.

Listening to other countries makes you realise how goo our nhs actually is

nota sorry! The NHS is amazing, we should treasure it more and we must protect it.

Dh had bloods today, we were supposed to see consultant at 9am but that went tits up. so had bloods and came home and waited.

Good news: cancer markers are down; phone consultation with reg so no need to go back to hospital (an hour's round trip without hospital time). Next MDT meeting at which he will be discussed is a week on Thurs, so he will, I think, have had at least one more set of bloods done by then if not two.

DD2 has her driving test tomorrow, praying she will pass as she needs a big confidence boost right now.

hearthethunder the real kicker is that the meds DH is on, ARE funded by pharmac for kidney cancer. Just not for his type of kidney cancer. Even though the meds are exactly the same. So if his kidney cancer was just slightly different on a slide, it would be funded. And for 2 years, they had told us he had the main kidney cancer, so we were never worried about having to pay if/when it came back because we thought we were covered. Only found out when they re did the pathology for his PET scan..........

So not only did we get the news it was back, but also it wasn’t the one they thought but a rarer form, oh and by the way if you have no money, there is nothing more we can do for you.

Was quite the consultation

frik that is really and truly dreadful. I dont pretend to understand the system in NZ, but - clutching at straws - is there any change of right of appeal, or creating a public out cry? If it would help you to have something to send to your local media about this injustice, please PM me - I'm a PR person in real life...

yolo we are one of thousands that this issue effects. I wish it were a case of people just not being aware, but they are. The entire funding for medication system here is archaic and no longer fit for purpose. The one thing I will say, is that we do still get meds cheaper here than anywhere except India. So although DHS meds are about 5 thousand pounds for a packet of 28 tablets, in the USA they are more than double that.

For me, what’s even worse, is that once you are paying for the meds yourself, you are effectively locked out of the national system. Which means that we get no support either. On the national system we would get some access to counselling etc etc. but now, nothing.

And to add insult to injury, we had to sign a waiver form so if DH ends up in hospital or with a stroke from the meds, we will have to fund it all ourselves because he is taking ‘unsanctioned’ meds.

It is so unfair, I try not to think about it too much because it feels like this huge vortex, a swirling black hole that is beside me every day in the corner of my eye, waiting to suck me down.

oh frik I have no words, but that is a truly awful situation, catch 22 at its absolute worst. I am so sorry... how is DH ? mine has 'phantom rectum pain' which is pissing him off...

The two BEST words in the English language: 'cancer free'. Hospital phoned, op a complete success and no spread to any of the 10-12 lymph nodes removed. Best possible outcome. Rehab will still be long, he's in a lot of discomfort/pain still, but OMG the relief.

I almost hesitated to post that here, because it is all so bloody unfair, but equally I think that good news is good news... and I am thinking of you all who have gone through/are still going through it, and also sure that we are not out of the woods yet.

Enjoy it yolo. We're all really happy for you.

As for pain relief, bearing in mind, where the surgery was and all the nerve endings in that area, see if you can get something stronger than what he's on currently. In increasing order of strength it's Morphine (preferably injected), then Oxycodone, then Fentanyl.

Wow, yolo that's fantastic news. One less worry which should help recovery,

Yolo that’s amazing!!! Oh my word! Am so happy for you, please never hesitate to share joy, your news has cheered me up and I am going to to sleep smiling

thank you all, it doesnt seem real? but am under no illusions there is still a long hard road ahead - but I know how lucky we are to have the chance to follow that road. to all of you struggling.

How's everyone doing?

and I actually mean YOU, not your DHs. Because one thing that has become apparent to me is that no one ever asks how the support person is doing, you are just supposed to smile sweetly and be supportive and run the errands and carry the family load and and and...

It's all a bit much for me at the moment (and I know how lucky we are) but I am actually feeling quite bullied by DH and the DDs and the way everyone talks to me. It's not about me, yada yada, but being the calm centre of the storm is really fucking wearing.

So I just wanted to send you all some etc, because it's not just about the ill person, the ripples spread, and us nearest and dearest bear the brunt.

Me ? I'm treading water tbh.....

I'm chuffed if I get through a day without crying.

Luckily I've got a couple of really good friends close by.

We've been to hospital this morning and his last X-ray has come back as stable but doctor wont elaborate or say anything else till we have CT w/c 5th August, then results 2 weeks after.

bloody awful limbo notapizza, that's a long old time to tread water xx