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]

@bookwormcrazy we had a time near the beginning when DH withdrew into himself and would barely communicate with me. I couldn't cope with that. We were greatly helped by couples counselling, which was based on the assumption that the real problem wasn't either one of us, but our inability to understand how the other one was feeling and why. Which isn't surprising really because we were both navigating the same uncharted waters but from very different perspectives, and just doing the best we could from those limited positions.

Maybe if you approach it, not as his anger and depression which needs fixing or your inability to cope which needs fixing, but a huge challenge for the two of you that you might both need some new skills to navigate, you might find a way forward?

@MontyDonsBlueScarf @notapizzaeaterI agree with both of your posts. Having someone to talk to or help us navigate this together would help.
however… my DH won’t talk tonight anyone. In his eyes, they can’t take away the cancer so what use are they. It’s typical of him.
For the first few years he seemed to cope quite well on the surface however the longer it’s gone on, the more angry he’s got and turning to alcohol which we all know is not going to help. He won’t even talk to his best friend. It took him 18 months to tell him exactly what is wrong with him. He is just not someone who will talk to anyone, no matter how hard I’ve tried.
he’s even used it as a weapon against me for having counselling and needing someone to talk to. In his head - “I’m not the ones who’s got cancer so why do I need help.” Especially from a “shrink who can’t change anything or cure him”.

5 years is a along time, especially with constant treatment but the longer it goes on, the less he’s able to deal and cope with it and the more angry he gets and the more he turns to alcohol. It’s not easy!

@bookwormcrazy , your world takes dealing with cancer to another level, I thought my experience of my DH’s was hard. Personally for me the thing I kept saying to myself was that the first rule of caring for someone else was to care for yourself first. A very easy thing to dismiss.

I don’t have any answers but hope you find some peace. I’ve found mnsnet a useful place to sound off and also get help about all sorts of things in life. Now living alone I’ve no one really to chat to so having an active ‘social life’ albeit with strangers has been useful and comforting.

Yep. In the last 5 months he was grumpier than usual. That was partly down to the steroids but also I think the pain meds were making his condition worse.
I didn't have counselling during this time (I do now) but I did have anti-depressants, just to help me through. Also, I prescribed myself treats - as others have said to fill my cup.
I'm no longer on ADs and wrapping up the counselling. It's taken a while but I've discovered 'me' again.

Thank you for your comments. One thing the counselling did help me with was to identify that over the last 5 years I have made my whole life and identity revolve around my husband and his treatment so I am taking steps to try and change that and add a degree of separation and doing things for me. Starting HRT has also helped me to feel more myself and less anxious which is good as that’s not normally who I am. I used to be quite good at dealing with stress and definitely not as emotional. I am also trying to “separate myself” from my husbands emotions and depression so that it doesn’t affect me as much and I stop taking things so personal.

I think what I find really hard is, although he has being go through this for 5 years, you wouldn’t know it to look at him. He is living a normal life and copes extremely well physically with the treatment. He is only young and apart from having a stoma, he doesn’t have any day to day impact from symptoms, only when he’s actively having treatment. The biggest challenge for him is what’s going through his head with his depression (mostly around having a stoma) and he just shuts himself off from everything using alcohol. I get whiplash from his erratic moods and always treading on eggshells.

My DH had a stoma too. For me it was a simple transaction of more life, more time with his kids and being with him in exchange for pooing a different way. Plus MrW joked about it with our friends - he warned them all about the farting which made them laugh. He made it normal for them.
That was his way of dealing with what was going on in his head and I suppose he made it easier for me too because I didn't feel I needed to fix it if he was coping.
If you're like me, trying to fix the impossible is part of the problem. We're good at finding solutions and making things work (that was literally my job).
Except we hit our brick wall with cancer. For some of us fixers we just can't let go and we end up repeatedly hitting our head against that wall.
Years later I still struggle to put myself first so I know it's hard but I encourage you to spend at least as much energy on your own wellbeing as you do on his.

Hi, I thought Id post an update.

It's two months now since DH died. But in my head, it's only a few weeks. A couple of weeks after he died I tried to do the thing that I gather we're not supposed to mention on here.

I've been in hospital ever since, currently recovering from five weeks in ICU . I've lost nearly 3 stone in weight and all my muscles have gone. So there's a lot of rehab to go. So I'm grieving whilst in hospital trying to get better. Which is really crap.

Biggest regret of my life. I show the Nurses pictures of him whenever I can.

I'm not sure what the future holds, but I'm glad I'm still here .

@certainagedwoman I don't know what we're not supposed to mention but if it's what I think it is, I just want to send you love and support for your fight to get better.
I believe in you.

@certainagedwoman I can guess. I am so sorry you found yourself in that place, I wish you well

@certainagedwoman I can guess. I am so sorry you found yourself in that place, I wish you well

So sorry you found yourself in that place, please come here and share if you are feeling that bad. Hope you’re getting lots of support going forwards.

any idea when you’re going to get home ?

I thought I had a easy solution to the grief and pain. I'm very very lucky to be here and not brain damaged.

I am medically well now, but still in hospital for some time. Being unconscious in ICU has meant that my muscles have just disappeared. I'm going to be here for several more weeks, having physio every day,. I can walk a few steps on a frame, that's it.

And I'm trying to grieve while all this is going on. I've never regretted anything more in my whole life.

Please, no one do what I did. If you're not successful, you can end up in a much worse place.

@certainagedwoman i’m really sorry to hear this. Unfortunately, I do understand I’ve struggled recently, but my daughter is pregnant and I keep myself focused on that.
You have us all here for you and it would be good for you to make use of us all when you need an ear who doesn’t know you in real life

This is a safe place in my opinion where we can say things we can’t say out loud

Sending you big hugs and hope that you will be feeling better soon 💐

Thank you

I feel so guilty for what I've put my family through

It really was very close to me getting brain damage and they have been so upset and traumatised

My sister found me and saved my life. I'm so lucky the ambulance came in 5 mins

I keep expecting DH to appear at my bedside to visit me. I still cannot accept that he's gone

@certainagedwoman, I was thinking about you today and how brave you have been to tell us about what happened to you. I hope you are getting better. 💐💐💐

Hi

I'm making some progress. It feels slow but they keep telling me I'm going really quickly. I'm able to eat "soft bite sized" food now including treats like bananas, cake etc

My mobility is also improving. I can walk on a walking frame, but still a long way to go.

I think I'm gonna be here a few more weeks at least. So depressing.

I feel like my grieving for my lovely husband is on hold. I have a little cry most days but right now my entire focuses on getting better eating as much as I can and getting out of here.

Im glad you’re making progress, keep it up and get yourself home, I know what you mean about grief being on hold, I feel like I’m a similar place, our business needed saving and I’ve just thrown myself into it and we are starting slowly to make progress but I could have done without it. I started another post and I suppose I’ve been using it as a bit of grief counselling and somewhere to chat about the crappy things that happen (or don’t, can’t seem to get the pension DH left me anytime soon) Also DH was so unwell for many years I think that maybe I did some of my grieving before but I do wonder when the grief avalanche is going to come crashing now.

I like a bit of mashed banana, on top of Nutella on toast, keep your spirits up and let us know how you are doing 💐💐💐💐💐

They've told me today that I can go back to normal food, no restrictions!!!

It's still hospital food but as well as the usual microwaved meals they also do fresh stuff like jacket potatoes and salads

It's going to make such a difference- hopefully they will take my nose feeding tube out soon!!!

Have been having a cry every day about DH, but feel I'm saving my grieving until I get out of here...

I can’t say I blame you @certainagedwoman the only surprise is more of us don’t.

Im only 47 and I can feel myself shutting down slowly health wise.

I'm sorry you feel the same way

I have to admit that a tiny part of me wishes I've been successful, but when I see the devastation I caused my family I change my mind.

I'm so lucky not to be disabled or brain damaged. I never thought about the herd cause my family, or what could happen if I wasn't successful.

At the moment I'm just focusing on getting out of here, I feel like I've put my grieving on hold. But I am afraid of the future, all I can see is loneliness and pain to be honest.

Yes that’s all I see too. First thing I say to people I meet who are widows is it doesn’t get any better does it and they all do the same mute head shake*

Your family haven’t had to go through what you went through though, they don’t know the pain.

*except family member whose life is now better because they were ill suited and it’s a relief for them.

Hey guys. I've heard you. I'm so glad you've found this safe place to share.
I'm one of the old timers on these threads and yes there are still times when I feel sad or anxious and I don't think it will ever really go away. I wear my PTSD like a badge of honour. It's been 6 years!
But honestly it's not disabling any more. There is laughter and the confidence to try new things. The last 2 years of counselling helped me a lot.
My top goals are to get fit and healthy, go on some solo journeys and write stories. I'm looking forward again.

@certainagedwoman im soooo pleased you’re going to get proper food. I hope it’s enjoyable and gives you the strength you need to get out of hospital.

@Willowkins thankyou for your six years on view. It helps to know things can be different even if occasionally tinged with difficulty.

Everyone here is so supportive. I’m not sure how I’d be if I hadn’t this post plus a couple of others to chat in because I don’t have the confidence to say what I do feel in real life.

Im hoping @certainagedwoman youve made it home. You are in my thoughts a lot particularly when I despair my life as I have been doing these past few weeks. Grief certainly triggers a lot of difficult feelings for some and his DC grief is basically to kick me from here to wherever that place is. Obviously im the sh*t on their shoe. (Not my child). Not my fault they’ve guilt feelings but I’m certainly bearing the brunt of it so much so I’m thinking of engaging legal help. So sad.

Sending a virtual hug @Hisredipad , people can be awful right at the time we really need them not to be. Go as low contract as possible if you can xx