Advise please

Hi Kym, Its a tough one, I have been incurable but treatable from the start of my journey five years ago, with various treatments i have been stable for a long time. Now there is likely to be no more treatments available to me apart from a very harsh chemo  that i don't want and wont be having. I personally don't want to know how long i have left and i don't think any of the doctors actually know how long someone has left for certain as everyone is different.

Yes you will be scared because its a big shock to find out you cannot be cured but you could live for a long time with the right treatment. Do you have a nurse at the hospital that you could talk to, or a maggies centre or Macmillan centre near you where they have a drop in service. I hope they can find a treatment that suits you and once something is in place then you will hopefully feel better, i know i did when i had a plan in place and  schedule to follow. All the best, Lynn 2.

Hi Lynn 

Thank u so much 4 your reply.  Yes I have a breast care nurse Macmillan nurse n a palliative care nurse so there r plenty of people 4 me but I find it hard talking face 2 face (find it easier online ) I've all ways have done I'm 1 off these people in the background that dont say anything 

Kym.

Thats fine Kym, not everyone can talk to a stranger, I never saw eye to eye with my old lung specialist nurse she was a waste of time but my new one is lovely and although i have to leave her a message on the answerphone she always gets back to me as soon as she can.

 I find this group very helpful and friendly too although in the past i have been a reader rather than a poster, Keep in touch and let us know how you get on. Lynn 2

Thank u Lynn I will do I'm going 2 c consultant on the 18th 2 c if they r going 2 carry on with chemo or stop it n move 2 radiotherapy  I will let u know 

Kym 

Hi kym

I asked how long the focs thought i had to live and it went from 3 days to less than a year and that was 2 years ago. I think only yiu can decide what you want to know and if you dont then thats absolutely fine as its your body, you life. 

I wish you luck at your next appointment.

Hi

Welcome to the community. I’m glad you found the courage to ask your question here. It’s not easy. 

I think it’s one we all struggle with. It came up about a month ago and there was a really interesting discussion- you can read it here:

https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/f/7cf15f26-3cf9-4436-895a-f7d7ee79310c/181763/did-you-ask-your-prognosis

One thing to hold on to is the fact that cancer care is changing very quickly. There are all sorts of new drugs and treatments around now that weren’t available even five years ago. They aren’t curing cancer but making it something we live with, often for years. 

Xx

Hello Kym I am going to see my Oncologist today regarding my lung biopsy results and I have the same questions in my mind.I want to know how much I left .But I want to know if it's worth to have treatment or not also.But the only sentence obviously I will get that they don't know how much left (or they don't want to tell) or I can get "nice" few years hooked up on chemo.

I don't think to be on chemo all time is a very nice life.I am only 42 but I prefer a quality of life and spend so much of time beeing normal.

Strange when I was diagnosed they give me prediction tools and now when you are stage IV they can't tell you?I think they don't want to tell people so they don't missencourage to try go for a "lovely" and "supportive"

There is still too much Taboo around dying.

Dear Kym

I hope you can find some comfort here, I certainly have. If it helps, I was diagnosed about a year ago and have outlived my initial prognosis - though I have forgotten the statistics they gave me. We are not statistics we are living, breathing human beings capable of tremendous courage. 

Xx

Kym thank you for sharing with us. 

These conversations are very hard and several people on this site will be going through similar situations each week. 

What I will say is that even if they can tell you a timeline many out live it. 

15 months ago I was told I could not have an operation as it was not worth it as I probably had less than 3 months left. Just yesterday I was offered the same operation even though my cancer is worse because they are amazed that I am still well. 

There are just so many things that can effect how well we do or don't do and no one seems to follow any set patterns. 

Quality is important so live to the best of your ability each day and remember one bad day or week does not always mean this is how it will be forever. 

Hi maz59

Omg thank u for your reply I dont understand y I cried while reading it 

Thank u I am beginning 2 think positive after all the replays I have received. 

Kym