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]

Sending everyone love, strength, peace and understanding. If there's one rock you can anchor yourself to, it's that you are not alone.

News from me this week is that the cancer is now in DMs brain. We almost laughed when we were told, she hasn’t had one piece of good news in this entire journey. Our reaction was very much - on the brain?! Of course it is!

I’m a big fan of recording the conversations with doctors too. I’m yet to listen to any back, as they’ve all been hard conversations, but it has been nice to know I’ve got it there if I need to double check facts.

Hoping the palliative teams are not involved with others yet but I’ve been really happy with the way we’ve been spoken to and dealt with. So hope that provides some comfort for the road ahead if that comes to be the path you’re on.

@SwanMatch my DH cancer spread to his brain - he was offered gamma ray and other than loosing a patch of hair he was back to normal within days - although he died 13 months later it still wasn't back in his brain (he'd had a new scan the week before he went into a coma)

That’s interesting @notapizzaeater - really pleased it had such a brilliant effect.

DM decided to turn down the radiotherapy as the side effects were quite significant and her consultant doesn’t think it will make much impact. We’re channeling quality over quantity at the moment - she had been given a diagnosis of months prior to this news, we’ve not wanted an update on this. Taking each day as it comes!

Sorry for not being around, welcome to all of or new posters, so sorry you find yourself here.

It's been 146 very lonely and long days since dh died. I couldn't actually tell you much about the last few months it's all a haze. But I'm so bloody lonely 😔 I can go days without actually talking out loud to anyone. All of "our" friends have dropped off the face of the earth, guess they were more DH's friends than mine. I don't actually have any friends of my own. I'm 44 and feel like a lonely old pensioner! If I could guarantee that he would be waiting for me I think I would quite happily go (sorry if that's insensitive) the kids (adults) are just getting on with it and pretty much don't even realise I'm here. I have 2 that live at home still and can go days without any sort of connection or conversation with them.
Loneliness is shit and I don't know how to stop it. I make myself go out most days but end up sitting in costa on my own feeling shit.
I have a couple of job interviews coming up just to get out to speak to people. I'm not sure if I'm ready to go back to work yet but for my sanity think I have to.

Please tell me this gets easier, dh was my best friend and we never really needed anyone or anything else, how do I make new friends at my age, proper friends not just the fair weather sort?

Anyway, how are you all getting on with it?!

Aww @loubieloo4

I remember well the sitting at home on a Saturday night and my FB Feed full of my / our friends all out enjoying themselves and I was sat in watching Casualty ! I decided enough was enough and basically went through my friends list and made a what's app group of everyone single and added them to it then popped on things that I could see happening, cinema, bands etc and asked if anyone wanted to join me - I had a few step up and started going out more often.

My DS is still at home but he's ASD so he doesn't talk to me, more at me IYSWIM so yes whilst he's here, he's not really - I could be telling him my leg has fallen off today and he'd be telling me about Warhammer, his car, the dog p, what's for tea etc etc.

Where abouts are you ? I think we need a meet up for hugs, snot and tears in equal measures ......
.

You get better at doing it @loubieloo4, I had no friends only family so maybe that was better. I once went 5 weeks without talking to anyone and it was awful.

I hope you find a job, I’m only just starting a new one next week and it’s nearly 13 months since I lost dh.

@loubieloo4 Everything you say resonates so loudly, right down to the thoughts of joining him. I once posted on Chat here about not having spoken to another adult in days but I don't think other people get it unless they have experienced it. It does get easier💐 even if that seems impossible to believe right now.

You have to go through it to know, it’s like having a baby. People who have children can tell you but you have to experience it to know.

What about widowed and young meet ups @loubieloo4? I think there’s an app called meet-up that’s for friendship.

I completely agree with all the comments about loneliness. It's bloody hard. I've managed to find a volunteering role where you don't have to commit to a regular slot, they're just grateful for anything you can do. Luckily it's in a field I have an interest in. So that and Doggo are keeping me going.

I can see that I'm going to end up with a whole different friendship group. People I knew as half of a partnership don't seem to be able to adjust to me now. I'm certainly not the person I was before so maybe that's not surprising. On the other hand some people I hardly knew at all have been spectacularly good. Which is lovely.

I also listened to a podcast by Julia Samuel and decided to sign up for her Grief Works app, which I'm finding helpful in making sense of things and taking baby steps forwards. The podcasts are free and once you've done one, the app keeps getting cheaper and cheaper, not a marketing strategy I really approve of but worth knowing. You also get an invitation to join a Facebook group which may or may not be your thing, I find it helpful to see how many people in totally different circumstances are going through exactly the same thing.

We had our meeting with the consultant this week and there was actually some good news - it's not pancreatic cancer. It is a metastatic neuroendocrine tumour (NET).

We came out rather giddy with relief but of course it's still bloody cancer and it's spread to his liver. But NETs are less aggressive and it is a 'low grade' which means it isn't hewing quickly (as I understand it).

More scans now, and then a referral to another London hospital with particular expertise in NETs.

One thing for anyone coming to this new - I recorded the meeting and it was so helpful being able to listen back to it (on my own, DP not keen which I understand).

I hope you're all doing ok.

That's such good news. I hope they can help him.

@WobblyLondoner whilst not good news it's good news IYSWIM - you have to take any little wins

@WobblyLondoner I get it - you're still in the woods but now you can see daylight filtering through the trees.

It's precious.
How did your 17 take the new improved diagnosis?

@Willowkins He'd obviously done some research on pancreatic cancer so completely understood this was a much better outcome. The heartbreaking bit was when he said he'd been really worried about what it meant for me (as well of worrying about his dad of course) - I'd be all on my own once he'd gone off to university.

He sounds like a very caring young person who had the world on their shoulders. I hope he can relax a bit now. There's a charity for teens who have a parent with cancer called riprap maybe have a look at it together?
http://www.riprap.org.uk/about/

Thanks @Willowkins - I've made a note of that.

DP has a PET scan tomorrow, after which we should see the NET team and get a better sense of his diagnosis, prognosis and treatment.

It all seems quite abstract still as he isn't in any pain though has a lot of tummy problems and is very reliant on Imodium to continue with a daily routine. The latter is the main worry and is really hoping there is something the team can advise or provide that will help.

@WobblyLondoner DH was prescribed Creon, once he got the dose right he managed to digest food properly again which put an end to his diarrhoea. Up until he started on Creon he was officially malnourished as the pancreas is key in producing the enzymes for digestion. Might be worth asking at his appointment if he can start on some?

That's interesting @CopperSeahorses. I'm not clear where the NET is - "lower gut" was mentioned at the last meeting (when pancreatic cancer was ruled out) but we don't have a clear view on that yet. I assume location would constrain what would help - but the treatment you mention is exactly the sort of thing I am hoping might be possible.

DP had a PET scan last week and we were hoping the next stop would be the NET team to find out more about treatment etc. But it turns out he needs another scan first - a dotatate PET scan, with a likely 3-5 week wait.

It just feels sooo slow - and so frustrating knowing this cancer is inside him and getting bigger by the day (though I know it is slow growing). It's been 6 weeks now since it was picked up at an A&E appointment.

He is being relaxed and 'don't stress' about it.

On a very trivial note it's making me anxious about Xmas. We are traveling to relatives (in UK but long distance - we'd go for a week) and the scan could fall during that time. It would, of course, take priority - but would mean Xmas on our own which isn't what any of us want.

Hope anyone else going through this is doing ok. I feel as though I'm managing on the surface but underneath it feels like I'm skating on a big dark ice covered lake and I'm terrified about it cracking and us all falling in.

@WobblyLondoner it's really hard the waiting and not being able to make plans - we was told about DH tumour it had been there for a while so another few weeks wouldn't make much difference - not that that helped at all !

@notapizzaeater Yes we are thinking that same thing - he's clearly had this for a while now so what's another few weeks. But I've personally had a a different (cancer but not life threatening) experience where the wait was a major factor in mine being more difficult to treat than it would have been had I been seen earlier.

I'm even wondering about how much more quickly he'd be seen if we paid for the scan. I never thought I'd consider that. DP is not keen to go down that route however.

@WobblyLondoner we had a fantastic private health cover through work but tbh the NHS was the same speed / treatments etc so we never kicked it in. We wanted a new drug (so was making plans to use the policy) which we wouldn't have ordinarily have had access to but Covid meant we could get it.

It's strange. I remember that waiting with a fierce intensity, like my whole wellbeing depended on his. Life had no meaning outside of the next diagnosis, the next treatment, the next news.

Well dear friends, I had an MRI a couple of weeks ago (for something else) and that was all fine but the scan showed a lump. The images have been shared with the relevant department and I am waiting for them to get back to me.

I don't know if all the counselling has helped with my anxiety or I just don't have the headspace for this nonsense any more.
But there are days when I forget about it completely.