no further treatment

Oh sweetheart, have you anyone you can call, I hate the thought of you having to be alone with your thoughts and tears.

I can’t imagine how being asked about hubby’s wishes re  DNR, to be honest I had to stop and reread before I realised what that meant, it’s something that hasn’t even been a thought in my head, I can’t imagine how that must have made you feel.

If the open and honest conversation has helped you prepare, good, but maybe you need the help of a counsellor who is trained to maybe say the right things to help you, I know I’ll be speaking to my GP eventually.

 I honestly wish I could find the words, any words, that would help lessen the pain you feel but for now hold strong, maybe when the permanent drain is fitted next week, it’ll buy you both time. 

 I’m sending you the biggest, kindest wishes and hugs I can...budge xxx

hi bramblejoo,

sorry to hear your news , we sorted michaels's DNR back in August , it was hard but good to know my husbands wishes, today we have got the bed and a syringe driver set up for michael's pain, its hard watching them go down hill so fast, and it seems when something changes it happens quickly, i hope your hubby gets to get hls permanent drain fitted next week, my nice called in  and was my rock today, she is a district nurse so is covid tested twice weekly so knew she was safe to see her uncle, she spoke to nurses here and sorted the syringe driver, I'm lucky to have a super supportive network, but it doesn't stop the feeling of being so alone at times, had lots of tears this week with my husband and alone, he was feeling that he was a burden , i don't see him as a burden , its so hard to watch him in this much pain, hopefully he will rest easy to night, glad you got to cuddle your grandson, grandchildren cuddles are the best,keep your chin up you are not alone, you ladies dont know how much the few days chatting to you has helped me fill less alone xx

I am so sorry for my late response, I had internet issues which kept me away.  There are no positive words that I can share, but I am heartened to read that you have been able to talk candidly, as difficult as that can be.  I suppose Dal and I have always done that but we have more frank talks to come in the future.

I sometimes don't know what to say or how to say it, as we all know, these are the harder times, but i hope that you feel you can reach out, if ever you need to... I for one will try to be around as much as possible.

Keep strong, keep safe... Thinking of you

Lowe'

Thank you all for such supportive words. It really does help. Hubby is doing okay so far, managed to get him downstairs after quite a struggle so at least he’s with me and, he was getting fed up in the bedroom alone. Just a few days to go until his drain is fitted so we’re counting down the hours. In the meantime I’m putting up Christmas decorations and trying to make a festive effort, better than the alternative of sittting here moping and crying.

Hope you’re all doing okay, please keep posting xx

Hopefully your Christmas decorations will lift both your spirits and the drain makes hubby more comfortable.

Tomorrow we have our telephone consultation with hubby’s oncologist, so somewhat concerned on how that will turn out, we have so many questions that need answers.

Today our daughters ex has told her that he is taking her to court. She had asked him if they could put a hold on their daughters alternate weekend visits, he lives in the North West, we live in Devon, as  she was so worried about their daughter bringing Covid back to our home, where we all live together. He knows how extremely vulnerable my hubby, her dad is, but doesn’t care, he said hubby should move out of our family home. All we can do is hope that a judge will be sympathetic to her situation, but very worrying, I’m wondering if I should get a solicitor. I’m not sure how much more I can take, so tired of how shit life is. 

Sorry guys

Budge

This is exactly why we are all here, so we can rant, call out, say it as it is and not feel guilty. We are here for support and to give support and it is no wonder that you seem to be feeling at your whit's end. 

It is a shame that your daughters ex is threatening court action, I am no expert here, but having done some quick research, if by North West you mean a Tier 3 area then I would feel the same as you. Based on government guidelines visits can continue even when children live with clinically extremely vulnerable adults, but you may be able to get further advice from your Husbands oncologist tomorrow.  They will know the exact circumstances and any advice they give may be relevant if you do need to get your own solicitor... I hope that it does not come to that.

Let's also hope that you get some of your questions answered tomorrow, I find waiting on those calls quite nerve racking.. 

Good Luck

I too will consider getting the decorations our for Christmas   some lights and glitz may lift the mood indoors too. So pleased you husband could join you x

Lowe'

Budge, I’m so sorry that you’re going through a tough time, your daughter’s ex sounds like a bit of a shit to be honest, I really hope it doesn’t get too messy and in the meantime just try not to get stressed out with things you can’t control (easier said than done  I know).

Best of luck with the call and please do let us all know how it goes. We’re all behind you. 
I’m now sleeping on a made up bed in the living room so I can keep an eye on my hubby (our compromise for him coming downstairs) so sleep is not great, but today is another day. Decorations are now all out and he likes them so I’m glad I did it in the end xx

I’m sat here waiting for call, arranged for 10am but you have to allow 1 hour before and after. I’ve tried to prepare, hoping he has some answers, feeling a bit apprehensive.

Its lovely that you’ve made the effort to decorate, a bit of Christmas magic is just what you need, I hope you get bucketloads of it  and hopefully the bed will get more comfortable.

Yes, he’s a lot of a shit, I guess people might think we are being horrid but this is who he is. I’m not sure if I mentioned he recently emailed the Head of the school where my daughter works asking what her rationale was for giving her a job.

The biggest sadness, is that he is our granddaughters daddy, she deserves a better one, sadly she is affected after time with him.

 I’ll let you know how we get on....Budge x

Thinking of you today, it’ll be a hard time for you but  I hope it goes ok. xx

hi all, 

Little update, Michael had a fall week ago Monday, and we had the video call last Wednesday saying no further treatment as he was to weak, and all cancer had progress , lesions on liver larger,rib,spine and esopahgus, and since Monday night hasn't been up, we have district nurses coming in daily as he is now on syringe driver for pain, we have hospital bed and commode, i have insisted that we moved furniture out of our room to make room for Michael, i want to be with him, he hurt his left arm and rib, but that seems to be improving, most of pain now is in his spine left shoulder left ribs. he is very sleepy, and i had the horrible task on Sunday of putting his two grown up children and his mum and dad in the picture, he has been getting weaker over last 5 to 6 weeks, but when they visited before he was always sitting on the sofa chatting , and as i said they had  never seen him try to walk to the loo, and as soon as they left have to nap as he was exhausted, even talking wears him out, people are calling in, but it feels terribly lonely here at times.

i don't know how much longer i have my rock ,my soulmate but i will keep going giving him all the love, hugs, that i can till the bitter end.

we were told back in April when he asked how all this would go, that he would get weaker and weaker , and am sad to say that,that is the case, I cant remember this last time i cooked him dinner, and it would be so nice to cook for him just once more but sadly i will never get the chance.

Oddly from somewhere and I don't know where i seem to have found a hidden strength.

I feel for everyone in the same horrible place , but he still knows who i am and for that alone I am grateful.

sal1