Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

Hope you're recovering with your knee notapizza.

Things have moved on quickly here. Basically the hospice weren't comfortable with the trachy, and my husband then insisted that things were put in place to come home. Technically a discharge against medical advice, but his consultants thought we would be OK as he can breathe OK without his trachy... I guess with it fitted, they could never 'OK' it.

So he's been home for two weeks now. Its been hard as everything he has bottled up since he was diagnosed sort of came out and he has been really struggling mentally. I can do all the trachy and peg care, and the meds and everything else physically but it breaks me to see him struggling mentally. We've had a few joint sessions with the onco-psychologist and some non-ssri fast acting anti depressants and seem to be improving.

I'm struggling a little bit as I was hoping it would give us a chance to spend some quality together, but between his mental health, a million pharmacies to visit and a millions n visits from various health care professionals and deliveries of equipment and stuff, it's all been a bit mad.

I'm hoping things will calm down a bit now and we can spend some nice time together. Took him out for a walk in the wheelchair yesterday which did us both good. It's just been a huge adaptation.

Also, now he has pain top ups down the peg as and when he needs (subject to the two hour limit) he's needing no more than two or three a day, rather than every two hours in hospital.

I think the having to ask and wait was a big issue in the hospital, whereas when he knows its instantly accessible he isn't as fussed.

@ClashCityRocker i can empathising with the trying to achieve quality time thing, but it seems so out of reach. Shoulder bump in solidarity to you xxx

@notapizzaeater hope the knee is healing up well

We missed the 'quality time window' we managed to get a quick holiday in just before lock down to center parcs which was priceless and DS and DH did lots of things together. It's so hard.

My knee, it's by far the worse operation I've ever had in my life. It's brutal ! I 'stupidly' thought once it starts healing it would be ok, it's not, it's a bloody long hard painful slog. I'm young, god knows how the little old dears manage tbh!

Sorry to hear about the knee notapizza. I know when my fil had his done, recovery was a slow process. Plus the physio which was also bloody painful!

I'm just counting any time we manage to spend together when he's awake and responsive as a win at the minute. It feels like we haven't had any chance to do anything nice together since he was diagnosed in September - he was admitted straightaway upon diagnosis for refeeding, and spent a month in whilst they tried to get him strong enough for treatment. Started treatment after a month, radiotherapy five days a week and chemo once a week which was brutal so he was pretty much in bed when he wasn't at the hospital. Then as soon as he finished treatment he was readmitted for three weeks due to various issues with his bloods and breathing. Back home for a week, then readmitted and told treatment had failed and he had days to weeks left - although he is doing well as they told him this in the beginning of February.

He is stubbornly refusing to go into the hospital bed to nap, preferring to sit in his chair... Which means I have to watch him as due to the tumour and radiotherapy his neck is bent forward and has a tendency to topple.

Mcmillan nurse says we're doing great but I must admit it is harder than I could have ever imagined. I feel so selfish as all I can think about is what I've lost - not just my wonderful DH but my life revolves around his needs entirely. And then I think 'well, it won't be forever' and then I feel awful, like I'm wishing him dead. He has family coming today so I will hopefully take the chance to get out for a walk for a bit - I'm quite sure he's sick of me hovering around him all the time too.

Overall he does seem calmer mentally which is a huge relief - and means we can at least enjoy some time together.

I hope things are calm and stable for others.

You’re not selfish at all, we all have those thoughts and feelings. For me one of the hardest realisations was that I felt like I was the one dying. I grieved for the life I was no longer going to have, and am so fundamentally changed by this experience that I feel I have truly died in a real way.

Struggling this weekend. Got cystitis - think that finally pushed me over the edge. Someone posted a YouTube video on Facebook, 'dancing in the sky' - just keep crying now. Was doing 'so well'

Cystitis is such a bitch. You are doing amazingly.

I do check in on this thread but I still find it so hard to follow it, I can't believe I found myself here. We are pinning our hopes on a clinical trial, the latest scan looked like it showed a spread after 3 months of chemo, he has another scan in a couple of weeks after his six months of treatment finishes. We are getting married on Sat and we are lucky that he is well enough to enjoy the day.

Bloody cystitis! That's all you need notapizza

bloodywhitecat I know what you mean, I lurked a long time before I posted as I couldn't believe I was in this situation. I kept thinking that there had been some mistake. Wishing you a lovely day on Saturday, many congratulations.

DH seems to have taken a turn for the worst this afternoon, a lot weaker and more sleepy. Pain was bad but we've got it under control. He's currently asleep in his favourite chair so I'm having a fun evening of 'is he still breathing?' Has his breathing changed? '
Bless him, he can't eat, drink or speak, can no longer stand unaided or even wash and dress himself and he's been so bloody brave. He's ready to go now and I think I'm as ready as I'll ever be to let him, even though it feels like half of me is being ripped away.

@bloodywhitecat congratulations! Wishing you as much joy as possible on your day xxx

I feel guilty about not contributing enough to the thread, it’s been such a huge source of comfort for me over the last 2 years, so many amazing wonderful kind funny brave posters, but I don’t seem able to provide the same for others, I just moan!

@notapizzaeater, cystitis!!! You poor thing!

Frikonastik sometimes it's nice to have a place to moan with people who get it.

I feel kind of conscious about moaning too much in real life (bar to my best friend who has been a rock throughout this). My other friends and family are getting married and having babies and I don't want to be the one who always brings the mood down, or for them to feel like they can't share their joys with me because of the situation.

Think we're definitely reaching final stage now. It's peaceful and calm and I feel in control and supported - for now anyway! It's a bit lonely though. Our friends have stopped calling as 'they want to remember him how he was' which I do understand - but in the dark reaches of the night it feels like a bit of a cop out. His sister is still coming round though which is nice to have a bit of company. Having said that, I wouldn't want a stream of people coming through the house anyway.

bloodywhitecat so many good wishes for today and a day filled with love and joy for you.

I was told about this thread over on the cancer support thread but not sure if my situation fits? We are waiting for the staging diagnosis of DHs lung cancer and I need a bit of online support. Should I start a new thread or ?

@Bourdic welcome.

No, you're safe, loved and fine here. We've all got DH at different stages, offering hand holds and support as needed.

My DH had lung cancer, he fought bravely for 18 months but he had a host of other medical issues and lost the fight in Jan. If you need to ask anything about it please ask, I could go on mastermind for lung cancer.

@bloodywhitecat hope you had a fab day 🥰

@ClashCityRocker @Frikonastick hope everything is as well as it can be.

I've had my worse week yet tbh, been in tears loads of times, think it's because until,my knee is better (can take 3 months) I'm stuck, I can't walk the dog, drive etc - I've lots of friends fetching and carrying and popping in but I hate hate hate not being able to do anything ! Then the realisation that everything is opening up out there and all of a sudden I've got to juggle DS and the dog when before DH would be at home to sort.

Things are still peaceful here. DH has been having short bursts of consciousness, his pain is under control but it is so bittersweet when he squeezes my hand and motions for me to come closer.

I stopped his feed a few days ago and whilst I know it was the right thing to do, palliative and mcmillan both confirmed it was the right thing to do and we've discussed it prior with him when he was stronger and he agreed that in the final days he'd want his feed stopped, I still feel like I'm conspiring in killing him.

Welcome boducuin and sorry you're in this situation. The waiting is horrible but I hope the news is as positive as it can be.

notapizza sorry to hear you're struggling. It does sound really hard after everything you've gone through.

[quote notapizzaeater]@Bourdic welcome.

No, you're safe, loved and fine here. We've all got DH at different stages, offering hand holds and support as needed.

My DH had lung cancer, he fought bravely for 18 months but he had a host of other medical issues and lost the fight in Jan. If you need to ask anything about it please ask, I could go on mastermind for lung cancer.

[/quote]
Thank you for replying. We get the definitive diagnosis on Thursday following CT and PET/CT scans and an EBUS. The consultant atm ( after CT scan) said tumour in right lung and probably in lymph nodes in chest. This was two weeks ago and then he had the PET and EBUS. It just feels so unreal.

Sorry for the terrible autocorrect bourdic.

One thing that I found useful is to allocate someone to be a 'message spreader' if you have friends and family who will want to be kept up to date. I got my sister in law to keep the family informed and his best mate to keep our larger friendship group.

It was awful having to repeatedly tell different people what was going on when you're struggling to process it yourself, and I found myself getting increasingly irritated by well meaning platitudes, which was quite unfair of me - many people just didn't know what to say.

@Bourdic they will be sending a sample off to see what 'sort' this can take 2 very very long weeks. Once they know which it is then they can make a treatment plan. DH was in lungs and lymph nodes when he got diagnosed. His was an NSCLC with EGFR mutation so his treatment was just one tablet a day at home with not too many side effects.

@ClashCityRocker we stopped DH feed/ liquids at the end, he was in a coma at that point a d would have hated being so helpless.

@Bourdic we set up a family what's app group just purely for DH cancer so I didn't have to repeat all the time.

@notapizzaeater . Thanks for the idea of the WA group and for those not on WA I’ll do as @ClashCityRocker suggests about a message spreader. We have only told a very feast the moment and will tell others after Thursday. Any tips for sleeping (me - DH is sleeping through he doesn’t cough during he night )

@Bourdic this bit was by far the worse, the waiting, I was like a zombie, trying not to break down as DH was being so brave and keeping it a secret from our ASD DS. The best piece of advice I can give you is not to google, the stats for lung cancer are horrific but also very very out of date. Could the doctor give you something to help ? I used aromatherapy oils to try and help.

Pretty much everyone I know seems to have gotten cancer fatigue. No need for WhatsApp groups or a messenger, no one ever asks anyway. I’m not angry about it. I feel glad for them that they can forget about it, or put it out their minds or whatever. We see DHS sister and family nearly every weekend and I can’t remember the last time she asked how I was doing, or offered to look after DD for a bit, or cooked a meal. Or even brought one over when they visit. Not that I’m doing mad catering or anything, I just do what I can now and have let go of the guilt of not being enough. Mainly. Sometimes.

DH had his first diagnosis in April of 2017, and after surgery was ‘cancer free’ until it came back metastasised in feb 2019. So it’s been over 2 years of hard yards since then, and I think because he didn’t die straight away, people just get used to it and to them, it isn’t still happening. Or something. I don’t know.

Hugs to you all xxx