End of life

I really don’t have any advice or words of wisdom Shebu but wanted to say that doctors can’t predict what will happen or when and you just have to keep on going the best you can. I have seen your profile and you have endured so much already.

Really wanted to let you know I will be thinking about you and wishing good things for you.

Take care

Patmart

Thanks for your thoughts Patmart.

Is anyone else at this end stage?

It is hard and good you can come here and talk to people who have been told the same thing.

I have been taken off my targeted therapy as it wasn’t working. I have been offered radiation for symptom control but there is no treatment now for me to stabilise things.

The numb feeling does get a bit better now but I do sometimes feel tearful for no reason out of the blue.

love xx

Hi Ruth, if you don't mind can I ask how do you manage each day?

I was told I have 6 months or less. Although been only a week since the news I'm waking up and what ever I do at some point I think I'm waiting for death. I seem to have teary moments many times in the day.

I have been referred to the community palliative care. MY CNS said they're very helpful- not sure what they are about.

I do keep busy with household jobs and going out to meet up with friends with my husband.

It is always there at the back of my mind and I do have to take oramorph for  breakthrough pain about once a day.

I just want to do what I can while I am well enough to.

I do get times when I feel tearful for no reason but I seem to be glad I am here for today and still alive at the moment .

I am under palliative care team as well as my oncologist and all they do is phone me and ask how I am managing the pain. They can increase the zomorph if I need it.

they are there if I want to talk to them about the pain.

it is normal for you to think about death. We all do at times 

love xx

Hi Shebu, I have just read your Profile page and don't recall us chatting before, so nice to meet you but just in the wrong place.     I noticed at the end of your information you mentioned possible chemo. I take it you haven't had any yet so could this possibly be what your CNS is referring to when she said the palliative care team can be very helpful! I just wondered! Hope you don't mind if I also ask if you have any pain? If so the care team will help with that too. I was originally referred to the palliative care team at our local Marie Curie Hospice after being diagnosed with stage 4 Malignant Melanoma which had spread to lymph nodes, chest, abdomen, bones etc and told I had 5-7 months. My first thought, I remember, was what can they do to help if I'm dying anyway and at first was reluctant to go. However, once I did go, it was nothing like I expected. They help you live in the moment! They have different types of classes to help you make the best of the time you have left and are very helpful and friendly!                       I was one of the lucky ones who went on an unlicensed Trial drug and it worked for me.

I, like Ruth, still have tearful days, for no apparent reason but now I think I'm actually grieving for the life I 'would' have had which would have been very different to the one I'm leading now, but as Ruth also said, I too, try to live in the moment, one day at a time and most of the time it works. There is not much we can do about our prognosis except love the ones around us, for as long as we are here and make as many happy memories with them as you can. It is not easy but worth a try!

Hi Shebu,

I am in the same boat as you. I have lung cancer that has spread to my adrenal glands, I've had chemo and radiotherapy which shrank the lung tumour a bit but that is when they found out it had spread.  I started immunotherapy in Feb but have just been told it isn't working and they want me to go onto third line chemo which sounds harsher than what I've already had, I'm not keen on having that yet.  i have asked if they can rebiopsy me to see if I can have targeted treatment, but they are saying it will be unlikely that I will have the right results (as an ex-smoker) and/or have radiotherapy on the right side adrenal gland tumour that has grown (left adrenal gland and lung are stable), again they are not hopeful.  I have not asked for a prognosis and mostly feel good, a few twinges and aches, feeling tired is my biggest bugbear. I'm currently looking at getting my pension early so I can enjoy whatever I have left.  Maybe talk to the doc about trials too.

It is hard to explain how I feel as it is all a bit surreal at the moment knowing I'm no longer treatable but I am positive and will carry on as much as I can normally. I do have down moments and it can be difficult as I live alone but I try, as ruthjp said, to keep busy.

Wishing you all the best and sending good thoughts.

Karen

• Hi Shebu, what a horrible place to be in. There is no 'right' way to respond to such a situation. Of course you might feel numb and wondering how to cope. I also wonder how I and others have managed with stage 4 diagnosis, at first I thought I would go insane, but somehow I did not and still function 18 months later but everything is overshadowed with this knowledge that death will come much sooner than I thought (I'm 57). I am also on immunotherapy and now waiting for my latest 3 monthly scan results, like you if I have stopped responding that will be it,.no.more treatment (metastatic melanoma). I am dreading when that happens and don't know how I will manage the feelings. Like many, I do practice things like mindfulness, also prayer (in my personal understanding). But it is so hard.  Sending love and support x

Just read your profile didn't realise you also have melanoma, reaching out to you as fellow sufferer x

Thanks for sharing your experiences Ruth , Annette, Karen and Tess73- I hear the brave spirit in you guys and aim to move past my numbness which is wearing off slowly but the teary moments pop up still, I suppose that will always happen. Nights are the worse to get through...