cancer shock

My thoughts are with you. 

We are not yet in that situation but my husband has had chemo, RT for advanced prostate cancer. Severe pain in back and hips now managed with paracetamol and codeine and oramorph when needed too.

He has postural hypotension and trying to manage his diabetes too alongside mild cognitive impairment. It's tough some days. We are not at the bed downstairs situation yet, but days in bed he has a bell! Yep up and and down those stairs. 

Other services involved but I'm still feeling it's a bit piecemeal. Oncology review still 6 weeks away  it's a tough one on the carer. There is only me and I'm ok with that. As long as someone doesnt ask me how I am .....

Take care of yourself. Its true we have to be healthy and strong to do this and we do it without question. I want my husband to stay at home as long as possible. 

my thoughts are with you too....its very lonely being a carer although i do have support if i need it ....and im the same about people asking me how i am ..part of me wants to tell them to push off ..part of me thinks ..why ask as you cant do anything ...mostly im just tired all the time ..mentally and physically ..makes me a bit crabby so i avoid being around people if i can ....i am very tearful on odd occasions but i think thats because im tired and worried ....

im mostly ok ...i have heart issues and blood pressure problems

which im trying to sort out so some days i dont know whos worse me or him lol 

im not keen on having carers in and out of the house and we were offered to try for funding for night time help but i can manage and i would feel guilty about leaving him alone with someone while i slept in our bed upstairs while hes downstairs 

we have a small house and having the hospital bed in our living room is easier but we dont much room now ..but rather that then him being in hospital ...

take care of yourself and my best wishes to you and your husband as well 

sarah x

I know how you are feeling.  The GP phoned yesterday- they've been quite absent for us. Last time I visited with my husband who was very unwell he just said take him to A&E! We'd had 2 visits there in previous weeks as you can imagine lying on a trolley for hours on end. 

Like you there is a lot of talk, we can help, I can sit with him etc but actually that's not the hard work. When he's unwell it's the physical looking after, washing, cleaning up and that can happen any time. One med creates a side effect etc. I know people mean well but for as long as I can manage I will. And actually he doesn't want someone else showering him down, personal care.

I can't really leave him other than a nip to get milk when he's downstairs and feeling "good" and it's always on your mind. It's easy for people to say look after yourself... 

I make use of online deliveries atm. I'll probably have to review things going into new year as I'm looking at the garden .... which will need TLC too 

Take care. Stay strong xx

My deep sympathy. It is hard. 7 years ago my wife was discharged home palliative on ly -  pancreatic cancer of the liver et al after 5 weeks in hospital. Best forecast I could drag out of a reluctant "junior" doctor was "weeks". We were promised visit by nurses next day  -   nearer 3 weeks! 

I was advised to move a mile to a different local authority because they provided much better help! I could find no way to pay and was told yes be better if we were "on benefits". 

Couldn't get a hospital bed into old house, so I bought and built a single downstairs and slept on the floor next to her.

We did get social care help 3x a day for 2 weeks but administrating timely pain relief got beyond me and after much bullying and begging and with the help of a wonderful MacMillan nurse I got her into a lovely hospice for her last 3 days. 

Once decided all over, the NHS, especially GPs, really doesn't want to know.

You are doing amazingly in impossible circumstances. All I can do is send kindly thoughts. Good that you are doing what you can to look after yourself also.

Best wishes, Dave.

I am so sorry to hear your experience but I know I've heard this so many times recently. 

It feels like as long as they your coping as the carer they can put you at the bottom of the pile. I'm not normally one for being a bit demanding, bowing to the idea that the services are doing their best etc, but I've had to find a vice as an advocate for my husband. We are not at emd of life circumstances but he does need a lot of help and support some days and there is only me. 

We have to keep shouting some days to get heard, but it is exhausting.

To anyone in similar situations, I wish you strength and courage.

thank you ...im doing what i can to make his last days or weeks as easy as possible ..its hard on the body and the mind but i wouldnt trade anything so far ...because he wants to die at home everything is geared around what he needs so yes you do compromise and sometimes i take myself off in another room to cry or hit something ...well mainly pillows lol ...

ive developed an aversion to being around people at the moment and with it being christmas time and everyones full of ho ho ho or something im doing ok enough to not lose my temper in public people ...

take care 

sarahx

Sarah. You are doing a brilliant job and I'm sure your husband knows it. To be where he wants to be at home, will be such a comfort. 

Pillows are great! I've also been known to open the fridge door and shout into it.  

Xx

thank you ...doing my best and surprisingly enough ive finally learnt to not let my mental thinking overide my verbal ....i never had much of a filter anyway but my daughter laughs at me and tells me im doing ok .....

its hard though ...my daughter has been a godsend and i try not to ask too much of her although shes quite haooy to take on the pharmacy or gps when they screw up as they have done lately ....

cant say enough good things about the palliative care team though ..we have had more help and support from them than anyone connected to his cancer care ...

its been hard though ..especially because its christmas time and all that ho ho ho and maybe its me but christmas just doesnt mean the same anymore ...probably because im also getting older lol 

anyway take care 

sarah x

We are strong. 

Christmas has changed. We have children/ grand children who dont live nearby so visits can only be with an overnight stay and I've had to curtail that this year. Although my husband will want to/like to see them, the running around is too much for him. There is always so much unseen adjustment to make. He has mild cognitive impairment too so this year especially he doesnt remember my birthday, anniversaries etc. I've reconciled myself with this now. It is just how it is.

I've made him a sinple A5 book of slip in sleeve photos which I update and find is a great memory boost and we talk about the time...

I'm the same this year. Christmas is not full of all that cheer. Xx

So sorry to hear of your journey, mine is similar, possibly only a few weeks behind you. The most help has come from the hospice nurses so far and they have said that when the time comes they can arrange a hospital bed at home as that’s what my husband wants. They are also great at dealing with the GP.

Hope you make some precious memories over Christmas x