What do I do? What can I say?

Hi , Having just read through your post I really feel for you. It's normal to worry, but nothing would be your fault. We're not trained as nurses and can only do our best. It's understandable that you called the district nurse out more in the early days of palliative care, we all need time to settle into the new way of life. It's normal, too, to feel life is just too much as your wife does. Goodness knows what it must feel like and all we can do, as carers, is our best to make things as manageable as possible. My husband said that just being there was the best thing for him, plus providing copious amounts of decaf coffee and tea of course, bless him.

When you need to talk, but, as you say, you don't want to wake her, could you pop into the garden to chat? The samaritans are there for you 24/7 and our helpline, 0808 808 0000 is open 8am-8pm every day. Believe me, I understand your need to talk; please don't feel you might blame yourself though, you're likely to find as the days pass that you get used to a routine and find things easier to manage. Remember to look after you too, we all tend to neglect ourselves, but if we're to be there for our loved ones, we must have some self care in place. I hope things settle soon and the nurse comes out to sort out the catheter.

Thinking of you, LoobyLoo

Hi Kamiro

I’m so sorry, my heart goes out to you and your wife.  Loobyloo, as always gives good, heartfelt help, advice and support.

The only thing I can add, is my husband had it in 2 inoperable lymph nodes near his spine. He was sent to Bristol for targeted radiotherapy I think it’s called Sabr, it worked on the lymph nodes. 

Take care, be kind to yourself.....Budge  

Thanks for reaching out LoobyLoo49.  I think part of it is depression.  She is constantly tired, takes no joy in anything, she won't see anyone and just wants the whole world to leave her in peace.  But she can't see it and won't take the antidepressants.

I guess if you feel like the medics have handed you a death sentence anyway, why prolong the misery?

I think she has given up on life, and I am finding it very hard to accept.

Thanks budge13, we were going to Bristol for radiotherapy on the primary cancer during the lockdown.  Lovely people there, all the radiologists were so kind and supportive. I'm glad they were able to sort something out for your husband.

Hi , I think none of us knows how we would feel, given a terminal diagnosis. Perhaps it's just too difficult to see anything beyond your own sphere of experience and everyone reacts differently, but I can easily understand your feelings. Has her oncology team come up with any advice?

Yes, they sorted out the lymph nodes but sadly whilst waiting it spread to his liver and lungs, so he’s on palliative care. Thankfully he’s naturally pragmatic and he’s so far coping. I try not to think too far ahead, I know what’s eventually coming my way.

So sorry for you both.....  

No, the oncology team have said her bloods were so poor after the stay in hospital that they weren't going to recommend any further treatment, her system isn't strong enough.  The main thing is that she should be comfortable. 

I know that doesn't rule out further treatment if her bloods improve, but she doesn't see it that way, and I don't see her doing anything that might help them improve, like eating and drinking properly.