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]

@Frikonastick Thank you for asking that question, it is something I deal with daily but had been afraid to ask because I am afraid of worrying people. It looks like it is more common than I realised.

@loubieloo4 thinking of you in these early days, hoping you got through yesterday.

Love to you all.

(I am a regular on this thread just with a name change).

@CopperSeahorses, I understand the hesitation especially in RL, I’m very grateful to this group because I never ever feel afraid or uncomfortable about expressing my real thoughts and feelings.

it has been such a gift, for years now, @Willowkins who started it all, @loubieloo4who has been on as long a journey as me I think, @MontyDonsBlueScarf and @notapizzaeater , @SchrodingersKitty , @bloodywhitecat , and more recently @linspins and @seethebeauty84 and @tralalaaaaaa all of your generosity of spirit when life has already taken so much, well it’s quite remarkable. You are all, quite remarkable. Thank you xxx

Hi I'd like to jump on the thread if that's okay.
DH was diagnosed with stage 4 DLBCL dec 2020. We were told by most that "if you had to choose a cancer, you'd choose this one". So curable!
And yep he got CR in May 2021.
July 2022 the familiar abdominal pain came back and blood tests showed elevated LDH. A scan showed that it had returned with a vengeance. More chemo followed - that failed. So the team applied for CAR-T therapy, he had that in jan this year. Unfortunately that also failed. He's had radiotherapy to keep it under control but now the only option is allo stem cell transplant. No matches on the bone marrow register (international) but luckily his sister is a good match. But...
He's so tired mentally he doesn't want to fight anymore.
He's told me he is going to refuse it, and he wants me to support him in this decision.
The cruel twist is that while car-t failed it did shrink the cancer significantly and then the radiation on top shrunk it even further so he actually feels physically so well at the moment which is why he can't bear to put himself through a SCT.
I want to support him but it's so hard to when I truly believe he's making the wrong decision. His reasoning is that he has done everything they've ever asked of him and none of it has worked, so why out himself through that and potentially ruin the last few months of good quality life he has left. I understand but perhaps selfishly I just can't get my head around it. We have 3 children.
Sorry, I didn't mean for this post to be so long but once I started I couldn't stop. Thanks for reading this far.

That’s really hard @watyawant, I don’t know how you come to terms with that but wanted to acknowledge your post 💐

So sorry @watyawant , that sounds like a truly impossible situation for you. I can't imagine what I'd do in your position.

As he's been ill for some time, I wonder whether you have a trusted person in his palliative care team that you could talk this through with? Our hospice has a family support team specifically for partners and family. I found them very helpful when DH was ill. Even if you don't have contact with the hospice, I think it would be entirely appropriate to ask your GP if he could refer you to them.

Thinking of you, Wish I could do more.

Thank you both. I think I'm holding out hope that he will change his mind when he starts feeling ill again or gets blood results with elevated LDH levels, for example. I think because he feels so well it's just inconceivable that he will only have 6 months (doctors last quote).
Problem is once he starts feeling the pain it may be too late for a SCT as they need to do it when cancer burden is low.
Ultimately it's his decision but his sister and I are joining forces to try our best to sway him.
He's only 38

That's so hard - has he spoken to anyone about it ? Our local hospice was amazing tbh. I was dragged (literally - my best friend just pulled up outside and basically demanded I got out the car !) but once inside they where amazing for us all, DH could talk to them without the emotions he had when trying to talk to me. I just spent weeks crying every time I went anywhere near the place but by god it was cathartic.

Is he on any support groups ? I found one specific for DH cancer on FB (I'm still a member and try to help newbies where I can) it was helpful as you could ask any question on there and someone had normally been through it or knew about it. Lived experience was so much better than 'doctor' talk.

@watyawant , it’s so impossibly difficult isn’t it. I found it very hard that many people said things like, it’s his choice, he has to go through it, he’s the one with the cancer, and later, he’s the one who’s dying. Which was true of course, but also felt like it totally invalidated my part in it, and that ultimately it was me who had to live with the choices he made, as bluntly, he would not be around to deal with the results. That would be me and DD.

What helped for me was reconciling in myself the realisation that ultimately there was no easier path. That no way through was going to be less traumatic. Because the outcome is what we fight so hard against. That our loved one is going to die. That is such an impossibility, such an unimaginable horror, that I spent a lot of energy trying to think of ways to make it hurt less.

This is reflection with the benefit of hindsight, of course. I just want you to know that I hear you, and I’m so sorry you are going through this. Sending you strength and fortitude xxx

@Frikonastick that really resonates with me.

One of DH's palliative care nurses said to me early on that in a partnership, cancer is something that happens to both of you. That shifted my perspective and made it possible to think about my own separate but parallel journey, as well as my part in his. In the end this turned out to be not only OK but hugely valuable.

Sending courage to @watyawant and all who could do with a top up.

@watyawant

My wonderful dh was diagnosed 4 years and 4 months ago 38 at the time. From the start we were told there was nothing they could do and he had six months to live. Well I'm very stubborn and found an amazing surgeon who took him on and so his journey started. He had 49 rounds of chemo and a huge operation over the last 4 years.
Then everything stopped working and his cancer (bowel) had actually broken through all the tissue, muscles etc and finally through the skin.
We could see the bastardy thing.

We were offered trials. Dh and I talked until the moon set and the sun came up. Eventually we decided that he wasn't going to have any more treatment, which we knew meant months if not less. That was in November. We went to Tenerife in January alone which was amazing and then to fuerteventura in March with our children. In May he went into our local hospice and passed away 4 weeks later in my arms on June 9th. He knew if he tried one of those trials he would be suffering for the last six months of his life. The choice was easy in the end, to enjoy the time he had left, painfee, no appointments, no symptoms or surprises from the new drugs or watching him have his hair fall out only to be told it's not worked.

And what an amazing six months we had.

Love and hugs
Lou

I know @Frikonastick will understand. I lay on my sofa with my eyes closed and was writing my suicide notes to my mum with the instructions on where to find an envelope with everything she would need including 10k in cash, that I had planned to take out of the bank before hand and details of all my other accounts and accounts for shit like sky and the water. I was also daydreaming about the fact I will write my own eulogy and tell her the photos and songs for my funeral.

Along with letters to all my children individually. A letter to a good friend and lastly a letter on what to do with dh and I ashes (in a big purple firework blasted off a beach in Cornwall)

I realised that I had been daydreaming about it for over an hour and in such detail.

But I'm still here heartbroken and lonely. I did tell my mum today and she thinks it's a perfectly normal part of grieving.

What do you guys think? Do I need to speak to my gp for some ad's or just see how I go.

Lou x

@loubieloo4 tbh I'd speak to your doctor about it. Yes I've felt like dying but I've never sat and made plans. My DH would be so so angry if I did! The fact that you consider leaving your children notes would make me speak to a professional. Have you had any counselling ? Our hospice offers it. It's still early days and I was having more bad minutes than good minutes (days is far too long to measure) at this point.

I'm a night owl (always have been) so if you need a chat let me know x

@notapizzaeater
No counselling yet, I think I will organise some when I go and take the money we raised at his funeral with the hospice. I have never had counselling before, is it one to one or group based or a mixture of the two? I think I will try to get a gp appointment this week and tell them. I don't think I would actually do anything stupid but it did feel better after my daydream. Maybe I just need to get round to changing our will and making sure everything thing is up to date. A bit more control of things.

I dunno I'm just so damn lonely all the time. Even if I have seen my mum for a few hours, I can then be back at home sat down and that's when the loneliness creeps in because dh would be sat with me chatting away or just sat in silence watching one of his programmes. He was there, we were there everyday for the last 4 years together and now he's not and somehow I need to live with that and it's fucking scary and shit and hurts like i want to be with him so badly.

Lou x

@loubieloo4

I started a what's app group of all my single friends after a Saturday night where my FB was full of people going out whilst I'd sat at home - my DH was the home bird, I was the one going out. We post stuff on there if people are interested. We'd started going to bingo when DH was poorly as he could come with us and it was a 'night out' without tiring him out. I still go now and is a nice easy night out and you can go alone.

Totally different but I got divorced when I was 25 and it took me about 3 months before I would go home straight from the office. I couldn't bear that once I'd left I'd not speak to another 'human' till the next morning. I used to go to a shopping centre and meander round before nipping into M and S for my microwave tea before going home.

I totally get missing the person, you need someone to discuss coronation street with, the ads etc etc as it happens. My DS has ASD so is here and will chat but never watches tv or sits in the room with me, nor is he interested in the silly things.

@loubieloo4 , I do that for sure, have quite elaborate daydreams about suicide, but it’s definitely ideation for me rather than actual desire to do it. BUT I definitely think you should seek help, and here’s why, suicidal ideation in and of itself is not the same as being suicidal, but it can definitely lead to it. So I see a therapist and I discuss my ideation and everything else with her as she is my canary in the mine so to speak. I know she has the perspective and experience to let me know if things are changing in a way I’m not best placed to prevent. So definitely see someone.

the loneliness is like a live thing, it licks at my skin and sinks spiny teeth into me, in the crook of my arm and at the back of my knee, sneaky and out of sight, vicious and mean. And also curls up with me on the sofa, a constant companion, pats my knee so I’m never alone from my loneliness

Hey everyone - new here.

DM has advanced bowel cancer - in at least three other places. I'm currently going crazy and need some talking down. I have lost all faith in her medical team, appointments keep getting changed, scans not scheduled. Her oncologist has been changed out of the blue and there is no real urgency. She should have been having a scan to review her current treatment next week and it has been taken out of the diary with nothing rescheduled, her cancer is incredibly aggressive and I don't think this current treatment is working.

I don't know what to do. Her treatment is currently on hold as she needs to have some side effects looked into further. In the week she's been off treatment one of the tumours, which she can feel, has got bigger and has left her unable to walk. Whilst on treatment she has been living life as normal - although been in more discomfort with the tumour she can feel shifting (it shrunk on her first treatment but others elsewhere didn't). She doesn't have any further scans scheduled because she is waiting to get a new oncologist?! I feel like I'm watching her slip away in front of me and I'm not sure what I can do. My partner is telling me I need to call the hospital and demand I speak to them, my mum is being far too nice and I'm worried she's going to get lost in the system as she's not advocating for herself enough. Has anyone dealt with anything similar, any advice?

I'm a bit of a mess today. I can't hold it together for a phone call with the hospital and I don't feel like I have enough information that will get me anywhere if they do even speak to me. I can't imagine I'll get far.

I know the NHS is under a lot of pressure and I am so conflicted with getting this riled but I don't want to have regrets for not trying hard enough.

@SwanMatch (hugs)

Have you raised it with PALS ? I'd be starting there.

@SwanMatch I don't think you need to feel conflicted about advocating for your DM. The system is so complex and creaky it's hard to navigate even if you're well.

For me, the trick was to treat it as a project management job. Project managers don't get angry, they just crack on with making sure the lines of communication stay open and decisions are being made at the right level. It's not a complaint or a criticism, but rather a necessary role in complex circumstances.

I'm not saying that anger is inappropriate, but if you can park it temporarily you might find that instead of the professionals being people to fight, they welcome your input as someone who is in a position to see things that they're not.

I have no experience with PALS but in principle they should be a good place to start. Alternatively you could try the specialist bowel cancer nurses. My DH had prostate cancer and I found some of the specialist nurses to be wonderful and others to be a waste of space, there didn't seem to be a middle ground and it was just the luck of the draw. Finally, I found the prostate cancer charity to be a great help in understanding what was going on and what questions to ask. I did all the ranting and raving with them and I could then get back to DH's care team with a clear head.

I hope tomorrow is a better day.

Thank you both so much @notapizzaeater and @MontyDonsBlueScarf - the virtual hug and advice is just what I needed alongside a good cry.
I drove the 3 hours home this evening and feel better for being here. Going in calm but forceful tomorrow to a separate appointment with her.
I think this week it has felt more real that I’m losing her and I’m not really coping with that well at all.

@SwanMatch calm but forceful is perfect. You need time out for yourself, even if it's very brief, to generate that, so don't feel bad about taking it. Hope the appointment goes well.

@MontyDonsBlueScarf it really is a project managers job being the caregiver of someone with cancer, what a brilliant way to put it.

@SwanMatch good luck with the appointment.

Thanks both - it was a day! She ended up being admitted but it took 20 hours for her to get a catheter!! The highs and lows of this journey!

I was firm but fair when I saw the consultant oncologist when he was doing ward rounds, shared my concerns about her not having an oncologist, scans in the diary and there being no real plan. The good news is that she's back on treatment and there is now a plan, but wow it has felt like an effort to get it.

She's now home and doing well, or so she's telling me.

It made me realise I should trust my gut and jump in my car and be there if I feel I should go. I felt instantly calmer knowing I was across things in person. It's a fine line between being there, continuing with "normal" life and looking after yourself isn't it?

Just re-reading the thread and wondering how everyone is.

I have just run into this thread. DH went into hospital for something else a few weeks ago and a scan picked up a lesion on his liver. He says he won't have a biopsy as he won't have chemo. I hope to convince him otherwise tomorrrow, as I don't think you can make that sort of decision without the central fact. It might not even be cancer. I am all over the place tonight, dogs keeping me sane. Thank you for this thread.

@Spanielsarepainless dogs are the best, they really know what you need. Hope you get a decent sleep..