Going out of my mind!

Bramblejoo, you are so right and we can Only go with what our loved ones want but we can all support each other. Sending hugs to everyone too x 

You are so right NannaFizz about the price we pay for loving someone deeply. This is the hardest thing I’ve ever had to face and I dread what lies ahead. But at the same time I have to be thankful for the strong love we’ve shared which some people never find through their whole life. Even knowing the outcome I would still do it all again knowing what I know as I’ve had years of total joy with my best friend x

Hi

I don't know if I can offer any words of wisdom but I can relate to this all too well. I'm struggling to find acceptance of our situation and at the risk of being very blunt and cruel, my husband isn't helping myself or our kids here.

He was diagnosed with an incurable glioblastoma in early Sept and given 12-15 months even with treatment. He is halfway through the radiotherapy/oral chemo combo. I can see he's struggling to cope but he seems oblivious to the fact that the rest of us are struggling here too. But to him, it's all about him. We're not allowed to be upset or show emotion. He can't or won't grasp that we, as a family, are processing this too. He's refusing our offers of support eg lifts to and from the hospital for treatment. He's hell bent on controlling this his way and in the process making it harder than it needs to be for the rest of us. It's a 60mile round trip to the hospital  and his eyesight has been damaged as a result of the tumour ( things are fuzzy , like looking through wet polythene apparently) His speech and language have been affected and at times he struggles to understand/retain information. My nerves are in tatters over this but there is  no telling him.

I too feel like the time we have left is being ruined but there's not a damn thing I can do about it. 

one day at a time is the best way I've found for getting through this for now...sometimes one hour at a time.

love n hugs to each of you. This isn't easy for anyone

xx

Bramblejoo, hope you’re keeping your head above water. I love your sentiment and I feel exactly the same. X 

Wee Me, hi x You sound at your wits end too.....I’m so sorry it’s so hard all round.  I know every day is a challenge.  My hubby isn’t ready to talk about anything, just every now and again he will address his condition and we have a cry, until the next time. It must be really hard for you if you and the kids aren’t allowed to discuss or show emotions. Can you put it to him that it’s something the kids will need to do and open the floodgates like that?  Maybe he’s in denial or scared to upset you all including himself? Maybe he’s scared of making it real?  I know my hubby has become quite pedantic about some things and as much as I love him, I have to bite my tongue sometimes and remember that it’s the little things are the only things he has control over now. So I try to not say anything but occasionally I erupt.  Our husbands may be ill and / or dying but we are still only human. I know I will regret those eruptions in time to come and wish I’d never shouted or got angry. 
I really don’t think that they appreciate on a daily basis how exhausting caring can be and together with the new worries every day that the illnesses throws at them and us puts the anxieties higher and higher. I mean, the threat of them having to be admitted to hospital for example or a new pain or symptom that we’ve not faced before. Not to mention Covid.

as you said, sometimes it’s just getting from hour to hour.  In reality, I’m sure we would walk over hot coals to take this away from them or turn back time to get our strong, capable husbands back but it’s not to be.  Maybe you could talk to the kids yourself and try to prepare them or explain that you don’t understand why he is acting this way, just so they don’t think it’s their fault? You don’t say how old they are? 
I guess there isn’t any manual that can tell us how to be.  Good luck with it and rant your head off when you like x 

thanks NannaFizz  Hang in there xx

Hi Kittypuss. So sorry to hear about your husband. We certainly felt like we had ‘fallen off the radar locally’ as my husband’s oncologist is in a different city in a different county and communication between his oncologist and GP was very erratic initially. But we were referred to the MacMillan nurse attached to our GP by my husband’s oncology team. The nurse came for a home visit in April and sat with us for two hours and listened both to my husband and me. She has been in regular contact ever since. Perhaps you could ask your GP if you and your husband can have a referral? Our nurse keeps saying she is there for me as well as my husband. 

Lots of hugs xx