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 will have to update my previous thread as I think I have found a new "the dress"

Thanks for your comments the other day. They really helped. Today I'm in calm acceptance but I've no doubt I'll go back to being angry and down.

Good to hear from you@Circlingthesunand that you're finding the emotional side of things more manageable today - but also feel free to drop back in if you ever feel like punching a wall. Are you getting support in real life?

Yes some but not really from my family as I'm supposed to be the 'strong one'.

@seethebeauty84 I am so sorry to read your news. Sending love to you and your family.

@Circlingthesun sending love to you too, I'm here because of my mum too. I hope you get some good news re. her diagnosis and treatment plan. I felt sick and unable to eat each time DM got bad news and we learned more about her diagnosis, that faded after a few days. It sounds cliche but it really is a roller coaster, and I hate myself for using that word but it's the best way I can articulate what I'm going through. Feel what you've got to feel and get through the day. Lots of people will say the right thing, lots will say the wrong.

I bloody hate this time of year. Two years ago we were in that place where he had had his stroke and was unable to talk or text, he was stuck in a hospital, in a noisy 6 bedded bay, the youngest by a good few years. He had no form of entertainment, there were no TVs and he couldn't work his music player, he spent hours staring at a white wall. I was only allowed to visit for 90 minutes a day despite the fact he was palliative as the stroke put paid to any further hope of chemo. His cognition was impaired yet they left him alone to manage his Creon (a medication that he needed to take whenever he ate due to losing most of his pancreatic function), he continued to lose weight because he no longer understood why he needed the tablets nor could he remember if he'd actually taken them. The number of times I went to see him and he had a little stockpile of paracetamol and Creon on his table. They left food and drink on his paralysed side and the oncologists weren't talking to the stroke doctors and no-one was talking to me. I failed him so badly. So badly.

You really didn’t, drs are so good at ignoring families. There’s not much you can do in 90min a day.

@CopperSeahorses he was failed by the NHS, not by you. There is no way that any one person can make up for the systemic failings in the system. No way. You were there for him, you fought his corner despite overwhelming odds, you never gave up. Don't ever forget that.

I felt much the same about my DH and particularly about his awful admission to hospital. I remember telling him, through tears, how sorry I was that I hadn't done better. He was utterly astonished and said I had done brilliantly. I am sure that your DH would have felt the same, even if he was unable to express it.

This whole business is dreadful enough without picking up burdens that are not yours to bear. Hospitals are crap. That's not your fault.

DM saw dr last week and has a treatment plan. I'm relieved that they're offering her treatment. Chemo then surgery. Whatever happens, happens. I'm over the shock now.

My next question is about chemo hats. It'll need to be plain because she doesn't like frills and fancy stuff but has always had sensitive skin.

Do you have any ideas which ones to get? I just want 1 for now

Good to hear you've got a plan and feeling calmer@Circlingthesun
Sorry I can't help with the chemo hat. MrW wasn't particularly blessed in the hair department so it didn't really come up. Hope you find something.

Sorry but the MeW comment has made me smile! Wonder if it's worth asking a general question on here somewhere!

*MrW

That's okay @Circlingthesun a dark sense of humour will help - a lot.

Glad your mother has a plan circling.

Our long wait to see the consultants about DP's NET ends on Monday - it will have been nearly 3 months since he was diagnosed (wrongly it turns out) with pancreatic cancer that had spread to his liver. It's been a very long 3 months.

Somebody has said, perhaps on here, that the medical team will be guided by the questions we ask in terms of what they say. The obvious one is about his longer term prognosis. I realise I'm not clear whether DP will as that question but I really want to - we went from thinking he might have months to a wonderful reprieve when we were told it wasn't pancreatic cancer - but we do t know if we are talking a few years here or possibly decades. I know of course that nobody knows the answer to that question.

In terms of DP, he's very queasy all the time and couldn't function without Imodium - but he isn't in pain. Despite everything we have had a number of lovely days out together (I've been able to take some time off work).

No questions really - just nice to share this with others who have been there. Roll on Monday.

Hi there @WobblyLondoner Not long to wait now. Remember to breathe. On the prognosis question, I think it helps to be precise in what you want to know and talk to your DP beforehand because the medics might not tell you without a nod from him. Also, be kind to yourself. It's perfectly normal to want some reassurance.

I agree it's hard without a prognosis, although I do research work connected with health so I've surmised what I think based on the stage and type of her cancer. I don't go with DM to her appts, DF does, and at the end of day, I don't know whether she wants to know. I would but I'm not her. It's hard though negotiating things.

Hope you get the answers you need on Monday- sorry I haven't learnt how to copy somones username yet

Thanks both. I'll have a chat with him tomorrow.

@Circlingthesun - if you put the @ sign in then you should get a list of user names to choose from. You do on the phone app anyway!

@WobblyLondoner of this works...thank you! 😁

*if

@Circlingthesun Yay!

I hate this time of night when my head spins and stops me from sleeping. Sorry I have another question

Christmas Day is 5 days after chemo. We are all due to my DSis and they'll be12 of us. What guidance for DM will she receive? Can she go if she feels ok? Does she need to avoid crowds? Is 11 a crowd? Assuming we don't have infections at the time.

Hi all, my DM died earlier this month. I am so so so proud of her. She was amazing, took this year all in her stride. She is at peace now. Thank you all for your guidance and for allowing me a space to rant.

@Circlingthesun my mum was finally a couple of days after chemo, she went out, looked after grandchildren etc she’d also still mix in big groups provided people weren’t sick or on the edge of a cold etc. we were never given guidance and carried on as normal where we could.

Hello @SwanMatch. I'm sorry to hear about your mum. She does indeed sound amazing.

We finally had our meeting with consultant about DP's NET. They confirmed that it is advanced (pancreas and liver) and are recommending chemo, starting in January. At home, CapTem, two weeks on and two weeks off, initially for three months.

We're both relieved to have a plan now but obviously anxious about how he will react to the chemo and how effective it will be. They were clear that the aim wasn't to cure but to reduce the tumour and halt its progress. There is also a monthly injection he may be able to have to help manage some of the digestion problems he's having.

From what I've read people can react to chemo very differently - but any experiences or advice welcome.

All the best to everyone, through these difficult times.

Hi @WobblyLondoner has the chemo started yet? My DP got diagnosed with advanced pancreatic cancer (spread to liver) in 2019 and has had 84 rounds of Folfirinox chemo since it's never been considered operable and they still don't know how he is alive and well at this point but here we are, ever grateful. He was 37 at the time, we have a now ten yr old DS. @Willowkins am so grateful for you starting this thread I stumbled on it by chance earlier this week and have read if from the very start up to now like a novel all week, it's the support and real life info from all the wonderful generous contributors I've always needed and never knew was here all along 💕