Hi, how was your Christmas?

Hi NannaFizz,  

I'm so sorry that you've had this news and that it came at Christmas too. Everything seems magnified at Christmas as we all want it to be a happy time but cancer doesn't care what day it is. 

I don't have any experience of the kind you ask for but I just wanted to say that although I don't know you I'm certain you're not failing your husband in any way whatsoever. From your previous posts it's clear you love your husband very much and you are doing an amazing job in awful circumstances. 

Sending you love and best wishes x

Hi NannaFizz

sending you huge hugs. Sounds like you've had a rough festive season. I can empathise with you. My other half had his consultant's appointment via video on 22 December. As has been his want he refused to let me sit in on the call and had his headset on so I could only hear his half of the conversation. He's declined the option of the oral chemo. Told the Dr he wanted quality over longevity then also said for his 20 year old daughter's sake it was better he was dead sooner rather than later. That broke my heart. Our kids are 20 and 23 and it's just as hard if not harder on our 23year old son as he still lives at home. The following day when it was just him and I in the house he said it was time it was over. He was fed up having no purpose and said it would be easier for everyone if he was dead. It broke my heart to see him so low.

We made the best of Christmas Day and it passed without drama. A minor miracle considering he'd invited my parents over behind my back (my father and I haven't spoken in over 2 years and it was the first time in 9 years they'd been in our house - gotta love happy families) 

I've no words of wisdom that can make this journey any easier for anyone but know that you're not alone, You're not failing your husband. You're doing your all for him. That's all we can do for them.

Hang in there. Big hugs

Wee Me  xx

Hi LC50, thanks so much for your kind words, you’re right, cancer really doesn’t care what day it is or what your plans are . 
I hope all is as well as it can be with you xxx 

Hi WeeMe,

My heart goes out to you because your husband hasn’t involved you in his consultations and decisions.  I know it’s very hard for him, my husband and anyone who is having to make this awful decision about further treatment or not but it must be awful to be excluded and to hear your husband’s thoughts about it’s time it was over. Doesn’t he tell you why he does this? That’s heartbreaking for you and your children certainly.  I’m glad you got through Christmas ok with your father too, I take my hat off to you, on top of everything else.  I don’t think I could have coped! 
We’ve had a phone call from a local hospice for an out patient appointment, so I’m hoping that we can find some support there now. I’ll let you know how it goes.  
We all have to hang in there, best of luck to us all xx 

NannaFizz, he's a control freak. Always was, always will be. Thinks this is something that he has to control on his own. After 32 years together, I'm not going to change him now and he can't see that this is making it harder on everyone. To use the catchphrase of 2020- it is what it is.

xx

Hi Wee Me, that explains a lot then.  Nothing will change him I guess. It just makes caring much harder and also for your family too.  It’s easy to let us carers ‘get lost’ when our needs aren’t addressed either.  I know he didn’t ask for this but none of you did. None of us did.  I can’t imagine how your husband and my husband are actually feeling, I can guess at what they’re thinking to some extent but to be honest, I’m physically, emotionally and mentally drained and exhausted.  I feel like I don’t have the right to feel like this at all. Makes me feel quite guilty. Every day is another challenge and at the minute, I need some help supporting him.  I’m hopeful that we get some support from the hospice when we eventually get an appointment but where I live has just gone into tier 4.  Covid certainly isn’t helping the situation. 
Anyway! On a different note, We aim to be in bed before midnight tonight. As much as I will be glad to see the back of this year, I’m dreading the loss in the new one. X 
Happy New Year though to one and all xx 

Hi NannaFizz ....big hugs from me to you. 

I hope you get your appointment through soon and get some support. Covid certainly isn't helping any of us.

  Easier said than done but try not to feel guilty. We're entitled to our own feelings too. While we can't begin to understand the emotions our husbands are going through, they can't understand what we are going through. 

It's been tearing me apart all day that I've most likely said "Happy Birthday" and "Merry Christmas" for the last time. Not sure I can say "Happy New Year" out loud... 

I'm going to stay up, have a large Jack Daniels and make sure this shitty year actually leaves!

Stay safe. Take care and here's hoping 2021 is kind to us all 

xxx

Hi NannaFizz, I'm so sorry to hear about your Christmas. My husband was also given further bad news just before Christmas and we were lucky he didn't have to go to hospital over the period too. When he was first diagnosed 2 years ago his cancer had already spread to his spine and he was lucky not to die from a spinal cord compression. They zapped him with radio therapy on the spine as well as chemo, hormones and steroids and he is not paralysed so fingers crossed they will have a plan for your husband too. My husband is unfortunately disabled now due to the chemo and cancer in the lymph so I also had to investigate things like stair lifts, wheel chairs and all sorts of support around the home. He has managed remarkably well on some practical and inexpensive changes to the home (we haven't needed the lift yet) and so there is a lot out there if your husband did need the support. I heard too that Macmillan will come and do a home assessment for you if you needed it too. I wish you all the best and hope that they have a plan for him and you too. 

Hi Wee Me, I’m glad the whole thing is over now....I had the same feelings as you about actually saying the words.  It was my intention to be fast asleep at midnight but we weren’t.  We had a glass of champagne and said Happy New Year but obviously we know it won’t be.  I couldn’t help but think...this time next year I will be here on my own etc. Awful isn’t it? 
I hope you’re keeping it together.  Sending you hugs and strength x 

Hi Crepe Suzette,

thanks so much for that info and I hope you are both doing ok too. You have a lot to cope with.   I wasn’t sure if radiotherapy might be an option, we’ve got a call from the consultant oncologist tomorrow .  I’m so worried about spinal compression, it would be the final straw for him I think. Luckily we live in a bungalow (which ironically he has refurbished from scratch) so no stairs to worry about for us but he is a big lad and I’m only little so it would stress a struggle. He’s still managing on his own to walk at the moment but getting worse. I’m hoping to get an appointment with a hospice soon and hopefully if we need a wheelchair and an assessment, we will be signposted by them.

yYou seem to be doing a great job and I hope you’re looking after yourself too xx