Hi Emma, back in July last year our support worker asked me the same questions where did my hubby want to die at home or hospice I had to leave the room and just cried and cried, but when I calmed down I realised that it was so they would know when the time comes,what his wishes were. He was given a recliner chair (that he didnt want) but has been a god send for my back, when he had those bad weeks, also a perching stool and a raised toilet seat in bathroom these have been very useful. I also went to Macmillan counselling back in November only went once but it did help, I will go again after this lock down finishes the only thing is they call it bereavement counselling (which almost had me walking out of the meeting).

I think it took a few days maybe a week after he stopped the treatment before the sickness and diarrhoea went but as long as your Mum can keep her fluids up she will gain strength flat lemonade helps.

You have to look after yourself ask for help as you have both your parents to look after.

We can only do our best,take care, my name is Carol and I have no idea how to accept a friends request

Hi Carol 

You have been amazing and a god send to me, your words and posts have helped a lot (even by asking the doctors to check mums thyroid). Mum isn't keen on the bed either but I've been stubborn and said she needs it so she should use it. It's been the worst few weeks of my life, my mum is my best friend.

I know we have to make plans but was such a shock when they asked me I just froze and said I didn't know and then went in my mum and dads garden and cried. I can't being myself to talk to my mum about her plans, it doesn't seem right. I've been trying to stay busy by cooking loads for my dad so I know his eating (even started to make my own pastry and pies) and going shopping for them-googling what mum can eat etc. My mum and dad said they don't want to be a burden because i have 17 and 9 year old daughters but i don't look at it as a burden but something I want to do and need to do. I love my parents dearly. It's been so hard because my 9 year old daughter knows nanny isn't well, I've told both my girls to always talk to me no matter what is on their minds but it's hard when my 9 year old asks why can't nannys cancer be fixed.

I feel helpless and want to do as much as I can for my mum and dad. Joing this forum and meeting you has been a blessing.

Thank you

This forum has been great for me to, when we were first told that it was advanced kidney cancer, and that he was been put on pallative chemo/or immunotherapy I was a complete wreck I was managing to keep it together in front of my hubby but once he went to bed I was on this forum it did help knowing that others were in a similar situation and were managing to keep going on with life, even having fun or even have a  laugh (without feeling guilty), looking at old photos of my hubby and I when we were in our twenties our kids thought the fashion was hilarious.

Strange thing is one day your Mum may do what my hubby did out of the blue said he wanted to die at home not in a hospital or hospice, and then asked what was for dinner end of conversation. You are doing a good job but please take care of yourself I hope your Mum will start eating a little more soon

Be strong and know you have friends on here 

We hope mum starts eating soon also as she's losing weight. She still has blisters in her mouth so is finding it hard to eat. The nurse is calling me tomorrow and I've arranged for a call back from my mums GP to discuss her medication etc.

Fingers crossed she starts to feel better soon

Hi Emma, just wondering how things are with your Mum, mouth ulcers are really painful I hope you have been given something to help, and that your Mum is able to eat a little, glad the nurses and GP are keeping in touch.

Take care and there is no need to reply but will be here if you need me

Hi Carol

Mum's not been so hood past couple of days she got oral thrush so contacted GP who gave Nystanan which seems to be working slowly she's unable to start Pazopanib just yet due to her mouth and throat. The palliative nurse did a home visit yesterday and said she will be back next week to check on mum. Her blood pressure was low yesterday and today so was advised to contact the chemo hotline (they gave mum a red alert card) for advice. It's crazy how weak mum has got, I gave her a shower yesterday and she is so skinny and frail.

Just taking it one day at a time xx

Hi Emma, Hubby had low blood pressure but only when he stood up, we were luck that the district nurse took his B/P when he was sitting down and then again when he stood up so she phoned the GP who took him off his high B/P tablets, it's strange we seemed to get one problem sorted and then a different one will comes along but I did find the red alert team so helpful. Nystanan helped hubby a lot as it clears the thrush going down his throat as well, as for been weak back in Nov/Dec 2019 I had to wash hubby as he couldnt stand in the shower so did try the perching stool but he would be back in bed absolutely shattered for the rest of the day, I hope your Mum starts eating a little better, small and often is what I had to do with hubby.

Take care of yourself

Hi Carol 

Mum seemed to have a good day today, she was sick after i gave her a shower (in the morning) but I managed to persuade her to try a small Madeira cake and a weak tea. Thank god she didn't bring that up. Your posts have been so helpful, thank you. GP has been brilliant, spoke to the nurse at Barts and mum can restart chemo on Monday once the thrush etc has cleared up although she is only on half the dose I am hopeful that she will get a bit stronger to hold on a little longer. She spoke about her wishes today for her funeral which was hard but we had a good conversation.

Hope you and hubby are ok

Hi Emma, glad that your Mum has managed to eat and keep something down, slow but sure,and little and often. When my hubby started on this treament he was 16 stone he did lose 2 stone in the begining but has put it back on now maybe that is why he takes 4 tablets,

He is doing really well I have to pinch myself just to see him walking unaided dressing himself do make sure you have Nystan and canestern cream in as this treatment can cause thrush.

Take care