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.

Sorry for my absence lovely people.
After 2 and a bit weeks of bloody hard work we have finally got my dm back to a point of moderate stability, finally beaten back the cellulitis and her skin is healing. Her last ct showed progression so hoping for a change in medication next week. She now has a bed downstairs and all the necessary bits to go with it which seems like a lime in the sand in terms of her progress.

Feeling a bit of an emotional train wreck this week which is not like me at all. It was dm birthday this week and she had a lovely day surrounded by people who love her. But she cried at the pressie I gave her (an old fashioned hand made teddy bear, she loves them), and it just made my heart break that this is likely to be the last time we can celebrate her birthday. Tearful wreckage, hiding in the shower as someone needs to have it together and it's my job in our family.

@Willowkins, you haven't got my in laws have you? Seriously some people need a rude wake up call. I hope all went well.

For everyone else, I'm sorry to have not been more supportive lately. Thank you for letting me have my momentary wallow in self pity.

minx lots of love, so glad to hear the cellulitis now on the back foot.

willowkins I think of you often.

My PIL have been reasonably OK (although full on convos about holidays they've taken, meals they've had, why don't we do x and y and z). DH was diagnosed 3 weeks before DM died, while she was in the throes of dementia and extreme pain. She never knew about him. And I didnt have the strength to see her in the last 3 weeks of her life.

Hi - can I join you all in the place where no one wants to be?

Been lurking for ages, and keep writing something but not posting - but there is so much on here that resonates with me.
By way of back story - my partner has stage 4 bowel cancer; had surgery back in the summer; but has since been found to have metastatic spread in liver and peritoneum. Chemo seems to have worked well for the former, but not the latter (which generally doesn't respond well - and based on google, prognosis isn't great) - so at the moment, he is on a bi-weekly chemo regime - possibly indefinitely. All not looking great long term - but what can you do when facing the unknown... just plod along and hope for the best?
Anyway, just wanted to say hi - and that it's sometimes comforting to know that there are others dealing with the same crap.

Re family seeming a bit self absorbed - I do slightly understand where they are coming from - in that sometimes, I find that the best way to deal with this all is to just throw myself into normal life, as there really ins't anything practical I can to to resolve the situation (a magic wand would be nice) - and I do feel that every once in a while, I have to look after myself first (well, no one else is going to) - so perhaps that's where they are all coming from?

Plenty of room here, a warm welcome and a large verygrumpy.
Sorry you have to join us...

DH finished his chemo this morning, yay. Now the wait for the colonoscopy (and removal of polyps, still dont understand why they didnt do that in the summer with the main surgery), MRI, oncologist review.

Apparently, because he coped with chemo very well, his immune system should start to improve almost immediately. No idea if this is true, but cancer care nurse said it.

Thanks yolo!
Re the polyps - DP also had one that was not removed at initial surgery - my understanding is that the surgery can release cancer cells into the bloodstream (hence why they do mop up chemo) - and if you have other surgery sites (like removing a polyp), there are easy places for the cells to attach themselves... No idea if that's true or not...

thanks verygrumpy that's a good way of looking at it.

How are you all doing? I hesitate to ask, because I suspect the collective answer will be "it's a pile of pants"... but I think of you all very often.

DH veers being totally gung-ho - chemo done, yay, and what happens next, what if it's not all gone after stage 3, mega surgery etc.

We have a big scan coming up on Friday, expect results on Wednesday.

It is all a very big pile of pants.

We've a quiet week, mri on Sunday with results a week later to check brain mets. DH is convinced he will be able to get his licence back even though we've all been saying from the start it's unlikely. I think when this sinks in he will bottom out 😢

Fuck fuck fuck those exploding colostomy bags. Why do they come from nowhere? Shit all over the kitchen and the downstairs loo, DH in tears in the shower for shame, DD2 in tears downstairs at the injustice of it all...

frik and nota I hope the upcoming tests show the least possible progression. xx

Hello @verygrumpyoldwoman a magic wand would be ideal!

Good luck with scan Frik and MRI nota

Yolo so sorry about the exploding bag, the indignity is painful.

Hello @verygrumpyoldwoman, welcome to the pants place to be.

@Frikonastick will be thinking of you all with the scan. Hoping desperately for the best results.

@yolofish, the worst part of this disease is the loss of dignity. So sorry that you all have to face it.

@notapizzaeater, it honestly seems like the smaller things that hit hardest. Loss of independence in tiny eroding steps is so hard to face.

Gentle hugs, large glass of wine and lots of cake.

I will probably be back later for a whine. Trying to figure out how to put current issues into words. Why is this all so blooming hard.

@yolofish - sounds awful for your DH (and for you too). Bags sound tough to deal with (one challenge that we haven't had to face here)

Is anyone else worrying about coronavirus? Part of me is thinking that surely if I head into London for work on public transport I am bound to be exposed, and obviously worried about bringing it back when DP's immune system is weakened by chemo. Not sure what the official advice is?
A bit worried that I may need to do some foreign travel for work, and by instinct is to 'just say no'

@verygrumpyoldwoman I'm worried - DH has all of the tick list of being vulnerable except the age !

I was supposed to be booking theatre tickets for 2 weeks time and I've decided not to book.

@verygrumpyoldwoman I am worried. My own immune system is not great and as my Mums primary carer she ticks all the boxes of being vulnerable and I would hate to put her at risk. I think I have scrubbed and washed my self, and everything else endlessly of late. We were always careful but are extra diligent now.

We've been to the hospice today as DH is quite down at the moment and I feel could do with some counselling - was upsetting as every one was really old 😥. They are going to sort something out for him though ....

He's still convinced that his driving licence is just a few months away - I think when he gets his mri results and asks the question he will be on a huge downer

@yolofish. Does the nurse say if it's like this for everyone or just teething problems? Wonder if he knew there's light at the end it might not be so bad 🤬🤬

Please may I join you all - I could really do with some support. My husband was diagnosed 6 weeks ago with secondary brain cancer following a seizure. I am worried, anxious and watching him have to face this is the most excruciating thing I have had to do. Treatment lies ahead, but seeing him so vulnerable, with side effects from the tumours is almost to hard to bear. We have a daughter too who although I have gently laid out that her father is not well, is not aware of the enormity of what lies ahead. I just need a safe place to be, so would like to join this thread.

I have been reading everyone’s stories, and here for others too.

@iwantavuvezela sorry to read that you find yourself here. It's a shit storm and very difficult but we all know how you feel. How old is dd? We told our children from the very beginning, gave them the full details but they are all teens and above. They open up to us and talk about there own worries, I think it makes it easier for them as they know we will always tell them the truth. Obviously it's a personal decision though, children are so much more resilient than we think.

So, DH's work have sent him home to wfh for the foreseeable. We are very lucky with his boss, they have been amazing from the start. I'm glad he's home, starting to get a little anxious about CV-19. We are waiting for his latest scan results, but he is doing really well.

Life insurance wise, we have got in contact with Macmillan and they are going to get their legal team to take over for us. Just seems like so much to worry about at the moment. Hope you are all doing ok 👍🏻

@iwantavuvezela pull up a chair, we e all got tissues ready. It's a shit place to be. My DH has been more upset about his lung cancer going to his brain than anything else, he hates not being able to drive when he feels fine. We told our DS (autistic) as soon as he'd finished his GCSEs, it's hard as outwards DH looks so well. Although today we've been to the GP as he's in a lot of pain around his ribs even on a bucketload of pain pills. If it continues next week am going to ring oncology. It must be bad as he's asked and got a sick note today for 2 weeks and he never ever takes time off work.

Glad @loubieloo4 Macmillan are helping with the insurance.

Thank you for the welcomeloubielou4 and notapizzaeater having others out there is a lifeline at the moment.
My DD (13) knows some of it, and I am answering questions and letting her know about hospital appts etc. I will answer as best I can as we go forward. I am careful with wording (I am using the term neurological ) as I don’t want her googling or hearing horror stories from others. I spoke to a lovely nurse at McMillan for guidance on this and she said she thought what I had said, and was doing sounded good. She also gave me a rather big, very appreciated, hug, and told me I was doing well as well!

My husband is off work and I can’t see him working until this battle is fought or lost. I am hoping his critical illness cover will pay, I can keep us afloat for a few months but not for too long - but I’m living in a true Buddhist sense and trying to take each day as it comes and having to stop thinking of what was, or what might be and focus just in the day.

I hope everyone’s weekend is the best it can be, with some moments of joy along the way

Iwantavuvuzela it sounds to me as if you are approaching it the best possible way for your DD - honest, but just honest enough in an age/timescale way. At this stage, while it sounds relatively stable, can you ask MacMillan re finances/investigate benefits? Sending you much love and strength.

Welcome @iwantavuvezela
It’s hard to know when/what to tell the kids. We kept radio silence probably for far too long as eldest was in the run up to A levels. As it turned out, DP’s surgery was just after A levels had started so we had to tell all (well, a slightly sugar coated version) which resulted in major meltdown. It’s hard - and I think the unknown element of prognosis makes it harder to know how much to share.

On a lighthearted note... is anyone else on the receiving end of people’s panic buying? DP’s chemo makes his bowels pretty dodgy (lots of jokes about The Phantom Shitter in this household) but actually starting to get a bit worried that I can’t buy loo roll anywhere!
Thinking of making it a task for eldest who is on gap year to go out foraging for supplies each day!

Thank you for welcome verygrumpoldwomen - do you have any small shops around you, like a Londis etc, I found toilet paper there yesterday, it seems like the bigger supermarkets have run out, but smaller places have. Hope your eldest forages well!

DD1 is coming back from France (ski resort) on Weds, thank god, as all resorts etc now closed.

Cannot find any advice yet on FCO website as to whether she should self-isolate to protect DH. DH, of course, is completely gung-ho about the whole thing... meanwhile I am anxious. Desperate to see my baby! but if confined to her bedroom for 7 days she will be absolutely vile. Plus it's 3 floors up, so I will be knackered delivering food! good for the thighs though I suppose.

Our local coop has stuff in, a few people have said that the odd places - Iceland, the range etc have stocks.

Aargh what a dilemma @yoloPenguinsEatfish it's hard as no one knows what's right.