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

Hello, all. First time on this board and not sure if I’m in the right place. DH was treated for cancer twice in the last two years and now it’s back again, or never went away the first times. He’s in his 50s. I’m finding this very difficult to cope with. I have always had poor mental health and he has always tended to look after me. I’m going to have to step up and become more adult, and I don’t know how or where to start. Unfortunately, I too was diagnosed with cancer last year - I’m in my 50s too. I’m just so worried, for him, for me, for our children. I think I need some counselling to help me manage. Does anyone have any suggestions? I was referred to talking therapies through the GP, but I found I was struggling to focus on things I wanted to tackle because everything just keeps coming back to cancer.

Hi @Teeshirt welcome.

We got offered counselling from the local hospice - have you tried them ?

@Frikonastick it's one thing after another 😩.

Hi y'all. Hope you don't mind me popping in. I'm doing okay - being a bit braver and trying new things.
Goodness nota and Schroedinger it seems fast to me. Are you still going through paperwork? I found that exhausting.
Sorry to hear that there's more to deal with Frik. Is there treatment for that (and is it free in NZ)?
Teeshirt I had CBT counselling. To begin with it was all: Gosh aren't you doing well but when I insisted that I really wasn't, they came up with some strategies to help me - with worry management and to look after myself. It took me a while to realise I was probably also suffering from PTSD which counselling confirmed along with GAD. I took antidepressants which helped (it took a couple of goes to find the right one and I'm not on them anymore). So maybe go back to your GP?
Much love

Good to hear that CBT has been helping @Willowkins.

Probate was FINALLY approved a few days ago - I applied at the start of Feb. So coming to the end of the most immediate death-admin, but still a 10-page to-do-list.

I hadn't thought of PTSD as an issue - but it is quite possible for me and DS too. We are bumbling along, but incredibly risk-avoidant. I finally made a doctor's appointment for about five chronic issues / concerns that I have been putting off, so getting a bit more proactive.

It's not surprising Schrodinger that it was traumatic. None of us signed up for this. We had no warning, no preparation, no training. We watched our soulmate while they were ill, in pain and dying. We put our lives on hold and ruthlessly buried our feelings because we had to be strong for everyone else. We tried with every last ounce of our love and strength to save them. I don't regret a minute of what I put into it but I know the cost.

@Frikonastick - so much love to you too. It is so, so hard. I'm so sorry. I can well remember the absolute, insane exhaustion of being in the middle of it all.

It's been a while, I was well and truly burying my head in the sand whist dh was on his chemo break.

Good news first! Our amazing dd has just finished her PGCE and has already got her very first teaching post! She will have her very own class in Yr1 starting in September 🎉🥳 I have no idea how she has managed to achieve so much with the last two years. So damn proud. Lots of happy tears.

Then obviously because our lives don't seem to let us have any sort of bloody break to celebrate...... dh had a scan and the results are shocking and scary. He has had some pretty major growth in all tumours and a new one in his abdomen that is bigger than any of his others. Plus his tumour markers have doubled.

Two things piss me off about this

1. why do they leave his scans so far apart
2. they fucking rang us at 19:45 in the evening to tell us 😡 who the hell thinks that's ok?

So now we have to wait until Wednesday to see them (in person for the first time since Dec '19😱) thankfully they are allowing me in. They did say to dh on the phone that is very urgent and they will be giving him a different chemo this time, which in medical,terms for dh means last chance chemo due to his very rare mutation.

Fuck fuck fuckity fuck. We were hoping for another six weeks off now there are more countries added maybe even have a holiday.

It feels like the beginning of the end, albeit slowly. Even dh feels like it, which is so unusual for him. He said he can feel where it's grown and is taking more painkillers. The new chemo has more side effects and he will lose his hair, which he really doesn't want as it will make him look and feel like a cancer patient.

So yet again my heart shatters that little bit more.

Oh Loubie that's heartbreaking. Did you get much sleep last night?

Oh loubie I'm so sorry to hear that. It's so hard to keep fighting when it just feels like everything is getting worse and worse. You must be so proud of your daughter, achieving all that under such difficult circumstances.

@loubieloo4 firstly congratulations to your daughter. Fir you hugs and support from afar. That's shite !

It really is death by a thousand cuts 😭🤯🤬

Lovely news about your daughter @loubieloo4 🙂 what an achievement. I’m sorry to hear about the scan results, how long were they leaving between scans? We are coming up for one a few weeks, DH hasn’t been on any treatment as he has been so ill with his newly diagnosed addisons diesease. So am also anticipating shit scan results.

My. DH now been in hospital 7 weeks tomorrow. Has not eaten in that time. They have tried Ng and Nj tubes but he keeps vomiting them up. He has a syringe driver for pain, but needs constant top ups. Wondering what chances are of him making it home?

We amazed to get DH for 48 hours before he passed. The hospital asked us what his wishes where and managed to organise it all.

We managed even !

pippity would they consider a feeding peg rather than an NG? It's easier to manage in my experience, especially at home. I appreciate it may not be suitable in the current situation but just a thought.

DH was in hospital three months and the pain top ups were a barrier to getting him home - but we agreed to just give it to him via his peg rather than through injection, which would necessitate far too many visits from the district nurse.

Ultimately, we had him home for six weeks and managed to control his pain well most of the time - I think we only had to ring the DN for an extra top up once as it is slightly less effective via the peg. We did have to really push to get him home and had to sign a waiver - but took the view that a couple of weeks at home was better than a month or so at hospital where I was the only visitor allowed.

I do know that part of the issue in hospital was the waiting time for pain relief to come - DH felt that he had to ask for it whether he needed it or not because by the time he did need it, it would take so long to sort out that he would be in absolute agony... Which then translated into extreme anxiety about not having the pain relief on hand and became something of a vicious cycle. At home, knowing he could have pain relief within 30 seconds he went from needing two hourly top ups in hospital to just a couple of times a day via peg.

Sadly my husband died earlier today. He had a heart attack in the night and just couldn’t take it. He never got home.

So sorry to hear this @pippitysqueakity ((hugs))

So sorry pippitysqueakity that he didn't make it home to be with you

I’m so sorry @pippitysqueakity, my most sincere condolences to you and yours x

It was my husband’s funeral yesterday. I am really struggling today to be honest.

Hi pippity I'm here if you want to talk about it.
I don't even remember the day after MrW's funeral - the day itself yes every little detail (more than my wedding if I'm honest) - but not the day after. I imagine that I started work on the list (all the sodding paperwork) that follows on from a death.
Take care my lovely.

Hi @pippitysqueakity

I'm around if you want to talk.

I think I just functioned for the first few months tbh, it's only now 7 months on that I'm getting upset, angry about things.

I've just this week finally had the last bit of money come through, absolutely shocking that it's taken this long.

Hi notapizzaeater Well done for getting the last payment sorted. It took over a year for me to get my last one. I have a couple of final things to sort out - Facebook and National Trust - but I'm still not ready yet. It's definitely a marathon not a sprint.

@Willowkins I've not done Facebook, linked in yet 😭

Well I was wrong.

I just cleared out an old bureau and found loads of paperwork (mostly his car insurance) going back 20 years. I'm going to have to sort it out aren't I