Caring, and watching, is SO hard!

Hugs,share as much as you want.We are all here for you.Have you tried a straw to encourage fluids ? I found this helpful for my late mum.I also used one post surgery when I was hardly drinking or eating.Having snack foods around helped with appetite.You  do have to think of your own physical and mental health.I looked after my mother for nearly 16 years and it is important to take some time for yourself.Even if it’s only for a few minutes.I spent quiet time in the garden.Do whatever might help.Would writing down how you feel be of benefit to you both ? Love to you both.Jane x

Neatie46, Jane (winkers) I'm sure speaks for all on here who have read your post and she has given some good suggestions. In 2018 when I was very seriously ill, in a side ward so that my son and daughter could take turns to be with me 24hrs per day, several things helped me cope with frailty, helplessness, pain and the feeling of 'no hope.' E.g. The quite exceptional nurses who cared for me (I'm not hugely religious but I asked one if she would pray for me - the fact that she said yes meant so much to me at the time); My son or daughter held my hand while we had short conversations - I tended to sleep a fair bit - but that physical contact was of enormous comfort; Anyone who was prepared to listen to me as I made attempts to soften the emotional and practical effects on others as I feared I was slipping away also helped me.

These are always intensely personal times which is why you perhaps felt unsure about posting on here. You sound as though you are doing a great deal to help your husband. He may well be keeping things to himself because he knows it can upset loved ones and is probably reluctant to venture too close to his powerful raw emotions for fear of not being able to control his voice or tears. Keep on doing what you are doing. You are the best judge of what is appropriate for your circumstances. 'Talk' to us when you feel you need some moral support. Perhaps also try the Macmillan help line. I do hope that the next phase of treatment in about 11 days time gives your husband a boost. Hanging in there is really tough but it provides time for the incredible skills of the medics to find further ways to help. Now you've got me writing too much!  Love from Ray xx  

Thanks Jane ️ 

We do always have snacks in, and we've moved to one of those flask bottles that keep cold drinks cold for 24 hours. I'm filling it half with water and half with ice, he likes that but it's harder to keep track of how much he's having BUT he is drinking it so that's a win. 

I have a 'nanny hut' in the garden that I do sometimes retreat to, but then I worry I can't hear him if he needs me so don't tend to be out there for long. 

Writing it down might be good, we used to do that many years ago, I'll definitely see what he thinks to that.

Thank you so much!

Sending love right back at you x

Neat x

I'm so sorry to hear that you are going through all that it really puts my problems pailing into insignificance. 

I wish the you all the strength in the world to deal with things and get the best outcome and please share as much as you need to and seek support from everywhere that is available to you both. 

Thanks Ray ️

I'm so glad you had such amazing support, I really do hope my hubby is feeling, and always does feel that from me too.

Thank you for your kind words, I'll try to get some alone time to call the helpline too. We have a wonderful Macmillan nurse who is a real support to us both, but I worry if I told her my fears for the treatment she may feel compelled to put the brakes on it, and my husband and our kids would never forgive me for being responsible for that, especially as I may be worrying unnecessarily. So the helpline might be a better option for me this time.

Sending hugs, and thanks again

Neat x

Hi Neat,Until mum’s dementia got too advanced she used an old bell to summon me.The sound did carry a way outside.I’m glad you have ‘nanny hut’ it’s important to take time out when you are a carer.It’s good to hear your husband is drinking.It is a real effort when you don’t feel like it.I hope you will phone the helpline or talk to your Macmillan nurse.I used it after mum died and got support.Love Jane xx

Thanks Si ️

Your reply makes absolute sense, so autocorrect, if it was need at all, has been your friend this time

Sending very best wishes

Neat 

Hi Nettie46, glad you found this site. We are always around to listen, and we understand the stress and fear of cancer. Jane's suggestion about the straw is a really good one. Also I have a flask of lemon barley squash next to where I sit most. It nudges me to hydrate. I hope you can get support from your CNS or macmillan nurse, to understand and reflect on the treatments planned.  You are coping with such tough times, be very kind to yourself. Sending love Hx

Dear Neat, everyone has said everything but I just wanted to add a small thing. Being with someone who is going through something as tough as your husband is facing is so helpful to the patient and as time passes, you may have a chance to talk about things that are important to you and to him.

Please don't worry about him being upset, or you, you are both quite justified in being sad and worried, it's all unknown and in any case we all experience these situations differently and no way is wrong. Tears can often bring you closer.

I also recognise your comment about guilt. I sat with my mother, father and sister during the week before mum died (my sister and I found out very late) and there were times, while I was filling up awkward silences with light conversation to help us all cope and avoid the hard facts, when I would have given anything to be anywhere else. I felt guilty for feeling like that but 50 years later, I realise I should not have been guilty, it was a lot to bear. And I tell myself what I tell you: Whatever you feel is right for the time you feel it. There is nothing wrong in whatever you feel, no disloyalty, nothing.

And you do need to protect yourself as far as you can - remember the thing they say about putting on an oxygen mask first so you can help others? This is the same. 

Keep in touch we're all here to listen.

Much love,

Latestart x

Wow,

You are all so amazing, thank you!

4 months ago I never could have even imagined all of this as a reality for us, we knew nothing of what was to come. I didn't even know this lovely community existed, and I'm truly sorry that it needs to and equally so very grateful that it does.

I've taken on board all of the advice offered, each of you has given me something to try for hubby and to remember for me, and I intend to take that advice. 

Thank you all again

Sending love to you all

Neat x