Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

I'm so sorry @Willowkins it is definitely traumatic as a carer/partner/husband/wife. I'm worried about my ability to cope in future esp as we've got a tough road ahead as it's incurable. I'm pleased your having counselling and that it helps I plan to go back to that myself I just keep putting it off while things are stable. Thanks again for sharing I can't believe I've found this thread it's a lifeline. Love to you all following on this grim path no one's alone here.

@BloodyMaryisthetruth one of the (many) good things about the palliative care team is that they really understood what it's like for partners, and provided all sorts of support just for me. You say your DH is incurable so you should be able to get a referral - it's by no means about end stage illness, it's more about making the life you have the best it can possibly be, for both of you.

@MontyDonsBlueScarf he was referred initially but after about three months when we went back to a 'new normal' of treatment schedule they discharged him, at the time we didn't even know that was possible so we were elated! It's the thought of it again that he may find too depressing. We haven't got a blue badge either, we find it easier on the most part to live in denial of sorts but it feels like a double life sometimes if I'm honest.

@BloodyMaryisthetruth I get that, my DH and I were in completely different places when it came to acceptance/denial and it's hard to manage. Perhaps you could think about calling the palliative care team and asking if you can have a chat with the family support team just for yourself? They will have seen this situation many times and may be able to help you navigate a path through it. At the very least they will be able to tell you more about the sort of help that will be available in the future should you need it, that in itself might lift the weight a little.

It's really hard when you are on different pages. DH didn't want to know any details at all, was totally head in the sand, we've an ASD (then teen) so I needed to know EVERYTHING ! So I spoke to them directly. It was bizarre, we'd be sat in meetings and they'd say one thing to both of us, then on the walk back to the car DH would be relaying almost a different meeting - almost if I didn't hear it (or ignore it) then it can't be happening, so here's my narrative I'm going with ......

@MontyDonsBlueScarf @notapizzaeater thank you both that's really interesting I didn't think it would be that common but I guess it makes sense. It didn't occur to me I could make contact just for myself either! Most of the time we can thankfully keep going as normal but when he gets worse mentally that's when I struggle and start going down rabbit holes in my mind and probably need help the most (hence why I sought out this thread I guess)! but then that's also when I'm most reluctant to bring it up with him as a source of support in case it makes him even worse. Argh. Il dig out the numbers and info online next week so I'm ready if I need to. Thank you. I hope you are having relatively ok weekends too 😊

Oh gosh, this is hard to read - I'm so sorry to hear what you've all gone through.

Very early days for us. Bar one dreadful day it hasn't really hit home, though we are quickly getting used to navigating the various complexities of the NHS.

I recognise what you're saying about you being on different pages. DP does want to know, but he doesn't want to know too much, or where he feels it won't help. So for eg when they ask if he wants to see his scans he always says no; I'd probably say yes if it was me, as it would somehow make it more real.

Chemo going well so far. Creon is his new best friend - what a transformation.

@WobblyLondoner If it helps, I used to say Yes to seeing the scans, notes, permissions or whatever - I told them it was in case MrW asked questions later. They were perfectly fine with it, I think because they know it's a lot for the patient to take in and it helps to have someone else to share the load. So, if you're up for that, it's a way in.

3 years today ...... just how ? Times gone so slow yet so so fast.

Been really busy all day and evening, just sat down with a baileys watching crap tv.

Great news about the Creon @WobblyLondoner. We have huge 'back to school' feelings tonight as it's chemo tomorrow til Thursday. It's still a monthly schedule so feels like ages since last time but doesn't make it any better. DP not handling the build up well at all. PlanA is school run hospital drop off then office by nine wait to hear pick up time then collect from chemo work from home then collect DS at 6. PlanB - be prepared to drop everything and deal with anything. Fingers crossed for a good sleep!

@notapizzaeater can't believe its three years. Sending virtual hugs. Nothing wrong with TV and Bailey's either good shout imo.

Fingers crossed @BloodyMaryisthetruth. We are lucky in that DP's chemo is home based and (at this very early stage) he is tolerating it ok. It must be really hard combining everything like that. How old are your kids? I only have one - DS 17.

@notapizzaeater Thinking of you - am raising my virtual Baileys.

Thinking of you @notapizzaeater

Sending you love @notapizzaeater

How are you today @notapizzaeater?

Today is going to plan for us so far, pick up from chemo will be later though due to pharmacy delays so luckily have someone else picking up DS from school anyway. He is 10, we just have one @WobblyLondoner and he doesn't know about any of this yet somehow 😬.

I’m doing ok ty.

we didn’t tell our son for a few weeks as he was sitting his GCSES and because of his ASD we needed to give him cold hard facts which we didn’t know at first.

in fact DHs 2nd call for staging and next steps - I was at Butlin’s with DS - as we couldn’t cancel without him ‘knowing’ so I chucked him in an activity my mum went with DH and I joined the meeting on the phone - people must have thought I was mad as I was walking up and down the same 50ft alternating crying and talking. By the time DS came back I’d pulled it together - was one of the hardest things I did

@notapizzaeater I'm glad to hear you are ok. Thank you for sharing that, I can sense the toll that's taken on you and no wonder. Dreading telling DS. I already have a mental catalogue of our 'lowlights' to date that I tend to flick through between 3/4am! Mix of bad news being delivered and crazy childcare/double life scenarios am i really doing this now?!! type-moments. Seems our strength to carry on has no limits when it comes to protecting our kids though.

@notapizzaeater how has it been 3 years 😳 you are amazing. Sending gentle hugs from me x

Sorry I'm not here much, I feel like I "should" post more to help the new posters.

Just for reference; Dh diagnosed stage 4 colon cancer at (38) with multi organ mets, after a huge operation HiPec, radiation and 50 rounds of chemo he passed away 9th June last year in the most amazing hospice (42) (definitely get them on your list of people to contact) Dh waited until he literally couldn't do it at home any more and said during his 4 week stay he wished we had used them sooner.

I would love to say my life is getting a bit more tolerable but it's not, if there was an off switch I would have used it months ago.

Oh @loubieloo4 I read your other thread and it's heartbreaking. The bit about your PILs resonated with me - but the way you describe your last moments with your DH is beautiful.

I was in a complete daze for at least the first 12 months. I didn't know who I was anymore. That's the grief. But gradually the joy is coming back. Don't give up

Omg only 42yrs old? My DP is the same age now. He just finished cycle no 85. Don't even know yet if there will be an 86. @loubieloo4 it's just not fair. Thank you for sharing. I'm so sorry to hear about this sending hugs x

Hello everyone, it's been a while. DP is just about to start round 3 of chemo (CapTem). He has a metastasized neuroendocrine tumour (NET). He's tolerating the chemo ok but is starting to have problems with the soles of his feet which are getting very dry and blistered, a common side effect we are told. His lips are sore too. He's using a urea based cream on his feet which is helping but any advice on how to heal a very cracked lip welcome.

He's feeling positive (apart from the feet!) - and says he feels his liver feels less tender than it was. He'll be scanned again next month to see what impact the chemo has had.

The hospital has been a bit erratic. His last appointment was a week too early (meaning he couldn't get the chemo prescribed - because it has to be within 3 days of the blood test which has to be at a set phase of your cycle). And the clinic seems chronically short on nursing staff - lots of leaving messages and waiting days to hear back. But we can cope. It must be grim if you've not got much support or are intimidated by the systems.

I hope you and your LOs are ok.

@WobblyLondoner I don't know whether it's sufficiently heavy duty but I recommend Blistex cream for badly chapped and cracked lips. You can put it straight on over open cracks, it soothes them instantly.

The hospital admin is awful, isn't it, one of the things I dread now that I'm on my own is getting ill and having no-one to manage the system for me.

Glad MrWobbly is feeling a bit better. Fingers crossed for round 3.

@MontyDonsBlueScarf Blistex - of course. I might even have some somewhere. Good tip, thank you.

Hello everybody, I’ve been on Mumsnet for many years but just come across this thread which seems full of people who can really understand what I’m going through 😕. It’s been a long and harrowing journey so far for me, my dh and our two dcs. He was diagnosed around 7.5 years ago and has fought and battled on, never giving in, no matter what but we’re finally at the stage where there is not long left. Probably only weeks, possibly less 😢. I’m struggling each day now, crying most days at the injustice and hopelessness of everything.
@WobblyLondoner my dh also has pancreatic nets (neuroendocrine tumours) which have spread to liver. Unfortunately, when he was diagnosed, they had also spread to his bones. This is the key factor and the reason he never really stood a chance of remaining stable. Although it is supposed to be a slow cancer, his has been quite aggressive. His initial treatments were never chemo based though, he switched to this type of treatment when the other options were exhausted. The only treatment that really worked for him was PRRT, it basically transformed him from a hospice patient to giving him back life over 6 years ago. Though it didn’t last long enough. We managed to beg, plead and persuade his Consultant for a re challenge a few years later and again it worked brilliantly but again didn’t last and they wouldn’t give him any more, so he’s been on other drugs (similar to chemo) for the past few years.
the last 18 months, he hasn’t been very well but has carried on fighting.
The worst part of his terrible fight against cancer is when his Consultant left in Dec 22, his new Consultant took on his case and his care has been very inconsistent and haphazard ever since. He’s now lying in a hospital bed in our front room, unable to sit up unaided or get out of bed. It’s devastating to witness the decline over the past couple of months. Despite having activity in the bones in his skull, his new Consultant didn’t do a head scan in over a year. He was repeatedly vomiting for 6months+ and had complained of headaches but no scan was performed 😭 by the time I got his seen this January a scan of his head revealed multiple skull tumours pressing into his brain. He’s lost a lot of vision because of this and due to the extent of the tumours, the only option left presented was whole brain radiation. The doctor explaining this said he wouldn’t lose mobility which has turned out to be completely untrue. After fighting for 7 years and taking every treatment and fighting to live. He’s now lying helplessly in a bed, unable to eat, move himself or even stand up. We are under the Hospice team and he was admitted a few weeks ago but hated it and begged me to bring him home. I did but the first night he attempted to get up and fell, so I had to call an Ambulance. He’s now dependent on Carers to was and dress him and me for everything in between.
I am so broken. Our whole family is. My dcs have suffered most of their teenage years seeing their dear father is non stop decline. I’m not sure how we’re ever going to overcome the trauma and grief. Each day the decline continues.
It had been going on so long some days I feel like I can’t grieve any more and other days I just cry and cry.

I’m so sorry Timesnearlyup my heart goes out to you , your dh and your teens reading that. It’s so terribly unfair and a huge amount on your shoulders. It sounds trite but try not to forget yourself in the middle of supporting everyone else. X

PS Edited to say that’s really shitty about the inconsistent care under the new consultant. Your dh deserves better.