Waiting to die

Oh Alice. I am so sorry you and your husband are going through all this.  My husband has terminal cancer too and I can relate to what you are both going through.  

I have given up trying to talk about happy times. As he is not really listening.  Our conversations are usually a long list of moans and grumpiness.  I am lucky as he has a good friend who comes over weekly and I get a bit of a break out of the house.  

I have gone into a bit of self survival mode and often leave the room land go upstairs eaving him on his own when he is particularly negative and moany and II feel like I am drowning.  I have my mobile number as the first number on his phone so he can phone me if he wants me.  I also have a baby monitor set up.

Accepting you are coming to the end of your life is just awful.  A kind of tragic countdown.  As a carer I often feel, breathless with anxiety and fearful of a future on my own at the same time as feeling so sad for my husband when he is in pain and distressed.

I notice you have the support of a district nurse and hospice nurse.  Perhaps you could reach out to them to see if they can give you more time or point you towards support.  I am lucky in that we can afford the odd carer to come in if I am feeling I am going under.  I then go out for a bit.  I get the carer to come at lunchtime and they are usually young and chatty which seems to cheer up my husband.  He is not eating any more beyond rice pudding and ice cream so there is time for chatting.  It gives him something to talk about when I get home.

so no real help to you Alice but a listening ear and a reassurance that you are not alone in your frustrations and fears. Rant any time you want.  

My last hot tip is to take up offers of help.  My neighbour constantly says to just ask if we want some help so I have.  I have asked him to go to the post office/ bank etc and queue up, take stuff to the tip and have a visit with my husband in the garden.  I was also a member of a what’s app group of helpful people when lockdown first started and we were isolating so I have  reached out to them too for the loan of stuff like wheelchair/ walking frame etc.  All this has made me feel I have a bit of community support.

my very best wishes to you both.

JaneyC

Oh my ,, hello ladies , I have just joined this group as my husband was having a bit of a wobble and wanted advice, reading what you ladies are going through,, I am now panicking a little . My husband was diagnosed April 2020 with lung cancer , and with all the covid ,, he has had to deal with it himself, he has gone through both chemo and radio therapy on his own , then straight onto immunotherapy, just got on with it ,, and I think I kinda thought he had smashed it ,, he has just had his last immunotherapy, and is now waiting for a scan ,, and he has just fell to bits ! My strong independent man said he feels alone and helpless,, he doesn't know what happens next , does treatment carry on ?? Or is that it ?? They did say they caught it early ,, please could I ask , have both your husbands had treatment? And how long have they been ill ? I am now wondering if I need to consider leaving my job and preparing myself ! Thanks in advance xx

Hi JaneyC,thanks for your reply, I can relate so much to your situation and am so sorry that you and your husband are also going through this terrible time. I think it must be so hard for men to loose all their independence and dignity.I do everything I can for my husband but he hates having to ask me.He is equally grumpy about me asking him what he wants or needs.I am taking up every chance of help,my escape is to take my dog for a walk.Best wishes and hugs to you.

Hi Wendone,thank you for your reply.My husband was diagnosed last October,he had chemotherapy and immunotherapy,both with few side affects,but he then found out that the cancer had spread to his spine,particularly his neck.He has multiple fractures in his spine.Unfortunatly these don’t respond well to pain relief medication. I think the main things I would recommend to you is get as much help on board that you can,your husband may not need it now but it helps to build a good relationship with district nurses and especially our hospice nurse is brilliant.She can liaise with all the necessary professionals and gets things done quickly.Also find out about counselling for both of you,my husband was so strong and independent and kept saying he was fine,but a good counsellor helped him to open up.It has been tremendously emotional for both of us but a lot of things needed to be said.Do you have a hospice nurse,ours answers all our questions,however silly.It is the not knowing that is frightening. I hope your husbands scan results are positive and that you can both get some answers.Very best wishes.