Fair weather friends

It is a very lonely time. I’m 59 have strong family and friendships but since my husband’s diagnosis August 2020 I have never felt so lonely. I have had less avoidance but more my decision as who do you complain to when your partner who is struggling through cancer treatment is horrible to you. My solution has been exercise and me time.. if only reading for 1/2 hour.  I plan something everyday as he has come very emotional dependent and that is new for us. So far as long as I plan something everyday I’m just about coping. Sorry no easy answer but just keep going x

HI Weaselbear

welcome to the online community. So sorry to hear what you and your partner are going through. 

I can empathise with where you are coming from. In early Sept 2020 my husband (now 52) was diagnosed with a grade4 brain tumour. Our world changed forever in the space of a few short weeks and in those early days my phone would light up like a Christmas tree with message after message of concern and support from friends(both mine and his). Now, a year down the line, where are most of these people? Gone. Vanished.  He has a small core group of friends who have been great with him. His tumour has left him with cognitive difficulties similar to a dementia patient and he gets easily confused. He's not the same man he was but this core group have been there through thick and thin. His brother on the other hand has yet to be seen. My husband actually went himself to see him ( 140 mile round trip involving 4 trains) rather than him coming through to see us. ... oh don't get me started! Makes my blood boil!

My own core group of friends have been great. How they've put up with me I'll never know!

And as you say there have been a few surprises along the way with the people who have stepped up to the mark. Very welcome surprises.

This group has been a great source of support for me as on here you are surrounded by folk who "get it". We may be supporting our loved ones through different cancer journeys but the overall emotional tsunami is the same. Feel free to vent anytime around here. There's always someone on hand to listen and offer a virtual hug.

Friends and family mean well in general but unless they've been through it they really don't get it. And you know what, I've come to the conclusion that I don't want them to "get it" as that means they've gone through the same heartache as I'm going through. I wouldn't wish this journey on anyone. It's tough and as you say on the rough days you take it an hour at a time to get through the day. But you know what, we get through each day and we get up the next morning ready to do it all again and we'll keep doing it for as long as we need to. 

Glad to hear that you're taking "me time". Its essential to keep you going. For me, "me time" is going for a walk along the beach, journaling or writing (I'm an indie author). We have to keep doing the things that make us us to help us hold onto the strength to keep going here.

Sorry now I'm rambling, I'll shut up!

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I hope some of my ramblings have helped. Stay positive. Stay strong. You're doing way better than you give yourself credit for. Sending you a huge virtual hug.

love n hugs

Wee Me

xx

ps Cats are good listeners too. 

Thanks so much for your replies! It's my first time posting on this site and it really helps to have someone listen and understand.

Wee mee - I'm so sorry to hear about your husband. That must be really tough. I can understand how angry you must be with his brother (his brother sounds like my sister!) I'm glad that you have a close group of friends to support you.

I completely understand that people won't get what we're going through unless they've been through it themselves. But, I'm not expecting them to get it. I'm just expecting them to respond to my messages when I tell them I'm finding it tough and need some encouragement. My sister and one of my "best" friends in particular doesn't reply to any messages at all, and I can't understand it! I'm not sure if it's our ages (I'm 40 and most of our friends are 30-45 yo) but the mere mention of the C word seems to have large numbers of them running for the hills as if it's infectious!

Its just disheartening when I've put in time and effort to support people in the past (going through things I didn't understand but could empathise with) Well, I know where I'll putting this energy when we're out the other side!

Thank you dancer for being here and responding. You're so right about planning "me time" It's hard to fit it in between work, caring duties and hospital visits. But, when I meet up with my small online choir every week it really makes a difference - adds in a bit of lightness. I used to be an avid reader, but I'm finding it hard to concentrate these days.

Hi Weaselbear, I'm so sorry to hear about your partner. You really get to see a different side to people don't you?

I can completely understand where you're coming from sadly. I'd never have thought I could feel so lonely until this awful awful disease dropped into our lives. I only found this group a few days ago when I was sitting in the living room in the early hours sobbing my heart out (quietly so my kids didn't hear) and really needing someone to hear me and how I really felt. I've read so many stories and feelings that could be mine and that in itself has really helped. And if there's something else I've learnt reading these posts, it's that we're NOT frauds for wanting support and sympathy even if we don't have the physical symptoms, we've got plenty of emotional ones.

I had the barrage of messages and support at the start but they've all dropped away. I mean six weeks of hearing about radiotherapy and chemotherapy is exhausting right? And they've got their own lives to live right? I started to think that it must be me being Mrs Misery and that I was just boring people. My personal favourite is the glazed look I see when someone feels they should ask how my husband is out of courtesy but doesn't really want an answer. You start to see who your real friends are. Basically the ones who are still checking in and actually want an answer to their texts.

Family is hard. Luckily my sister has been amazing, she listens, lets me rant, doesn't tell me it's all going to be rosy, but at the same time doesn't let me get too caught up in worst case scenarios. Unfortunately she lives 300 miles away and sometimes all you need is a hug right? My brother on the other hand.... who knows. Got a few of the good old catchphrases at the beginning but haven't heard since.

My in-laws.....oh boy. Of course we'll help with the 80 mile daily round trip....but we'll do this run or that run because that's better for us....... 

I've decided to focus on the people who actually care and not worry about the others. I realised I was getting so angry at them and the world and I haven't got enough energy or enough teeth left to grind to keep thinking about them. 

My husband has just finished being zapped for tonsil cancer too, it's a really hard one. I can't hug him because his neck's just too painful and I have to be careful around his RIG tube. I agree, dogs make good listeners and mine doesn't complain too much when she gets a teary squeeze.

Oh boy, have I prattled on or what?! Don't feel alone in your frustration & make the most of the support in this group, I intend to. Sorry guys......more prattling to come then! 

Hello and a big virtual hug Jen212! You have no idea just how much I needed your message this morning. I just dropped my partner off for his last round of chemotherapy, as we enter the final week of radiotherapy. He looked utterly broken. I came home and collapsed into a puddle of tears. Your message really helped - perfect timing!

I'm just so sorry that you are traveling the same journey as me. I hope that your husband is doing well after his final week of radiotherapy. I too am very practiced at secret crying - I tend to blub on dog walks, or in the bath where I can't upset anyone else! An 80 mile round trip is such a gruelling addition to an already exhausting schedule. That must have been so incredibly stressful. 

Oh the RIG! I am always so worried about catching it and it's really hard to hug him without causing some sort of pain. All our friends and family live hundreds of miles away, and with the regular covid testing during treatment I haven't hugged anyone in months! (Apart from my dog!)

You're so right about only focusing energy on friends that are worth it. I still haven't had a reply from messages I sent to one of my "best" friends 3 weeks ago! As far as I'm concerned, our friendship is no longer worth my effort. It's just really sad that this happened. I pity her more than anything, I can't imagine being that blinkered and cut off from emotions. 

Anyhoo - I probably need to try and do some work if I can concentrate for long enough. Much love and thanks to you all everyone reading this x

Oh I know…. there are some people who think the best way to help is to stay positive and point out the good things,  but I find that is really not helpful because it means they just don’t get it.  I realise I was not good with my sister-in-laws cancer.  I was devastated and felt so sorry for both of them, but I had no idea how to be helpful and didn’t talk about it with them or reach out to ask how I could help.  It’s shocking to me now but we were just raised to push bad things under the table and try to help people feel better by not talking about their pain(!)  It was only after my husband was diagnosed that I found all the ways people could be helpful.  So try not to blame those close to you for not knowing how to act - it doesn’t necessarily mean they don’t care, just that they are socially inept.  But that doesn’t necessarily help with your feelings that you are not getting help.  One idea could be to ask directly for what you need from those closest to you - perhaps choose one and say “ could you help me?  What would be helpful is for us to go for a cup of coffee and I want to tell you how awful this is.  And I just need you to sit and listen and sympathise but not try to make me feel better or say it will be ok or point out the good things.  I may cry and you just have to be ok with that.  All I need is a hug and to know you care.” Or whatever else you need.  I am lucky to have a few people who have been brilliant.  Just occasionally asking how we’re doing, and listening if we want to talk and letting it go if we don’t, offering help and meaning it.  Best wishes to you!

I agree Juppy. Until actually experiencing this, I would have had no clue how to really help. And I'll admit I've been too emotional to cut people much slack! If I ever have to support someone through this I know I'll be a very different friend and hopefully a better one. 

Asking for specific help is a really good idea. I wish when people had asked what they could do, I'd have been brave enough to say please make a big shepherd's pie or something I can shove in the oven when the kids are hungry, I don't finish work til 6 and I'm shattered! I know now I'd be the first to start batch cooking.

Hang on in there Weaselbear. I found that last week of treatment the hardest to cope with. Broken is the right word for him, I know exactly how you are feeling. I'll be honest, we're one week down today after treatment and it's not getting easier yet. My hubby has been very poorly. We've just got to keep on keeping on I suppose haven't we? Definitely take advantage of the continuing medical support for your partner and this chat has helped me so much. I can't believe how much better I feel for being able to voice these things with people who know exactly where I'm coming from. Perhaps it's the act of being a bit more proactive and not wallowing in complete helplessness.

Big hugs to all you brave carers reading this. Xxx

Hi, thank you for sharing. It would be good to talk to others in a similar position. I am 54 & my partner has cancer diagnosed 3 months ago. Trying to stay optimistic, maybe we can swap ideas? X

Just wanted to say hi, my partner has cancer. The online choir sounds like a really uplifting idea can anyone join?