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Hi PT, Welcome to the Group. Here we don’t talk about terminal because a lot of the cancers here are Incurable but treatable. They are coming up with new drugs all the time for different types of cancer. Here there are a lot of different cancer diagnosis but we are all Incurable. I am so sorry you don’t have family around to support you but I’m sure when others see this post, they will also be along to welcome you. Here you can get the support you need and also help to support others.

Why not take a look into the “Lovely Morning Chit Chat” where you will find new friends. I don’t think of myself as Terminal but Incurable and try to take each day as it comes and enjoy whatever it brings.

HiPosie Tivity welcome to the group, but sorry you have had to join us here. 

I too have a very rare sarcoma. Only one in a million of womb cancers that are diagnosed is endometrial stromal sarcoma, which I was initially diagnosed with in 2009. They didn’t know very much about it back then, so after a hysterectomy I was put on HRT. Bad mistake, my sarcoma feeds off estrogen so it spread to my lungs, and in 2014 I was told I was incurable. At this stage I was passed from the gynae oncologist to a sarcoma oncologist, and I was only her 2nd patient with this sarcoma at that time. Cancer is very isolating anyway, but when you have a rare cancer and have no one to chat with it, it can be very lonely. I had those struggles when I first joined the forum, I didn’t know where I fitted in, i didn’t have womb cancer anymore, but my lung cancer was not the “common” lung cancer that everyone else in the group had. During lock down I became a community champ for the lung group, but when I feel like I need a little support myself, I know I can come to the incurables and everyone is always so kind here. 

Like anndanv has said, incurable doesn't mean the end is nigh. I know it is hard when you have no time scale, but many people here have way outlived their time scale anyway, and some have said that they wish they were never told in the first place. It is hard waiting for that “date” and it becomes all you can think of. Best to enjoy each day as it comes. 

I hope you find the support here with us. There is usually someone around to chat to, anndanv  is very good at the night shift if you find yourself awake in the small hours. X 

Hi PT, welcome to the chat.  Everyone on here has incurable cancer, but the main thing is that it is treatable.  I have not been given a timescale.  Everyday there is some new trial, drug, treatment and lots of people on here have lived far past their ' time'  .  I am fairly new on here as well and it really helps me to chat to others who are in the same boat as me and provide me with inspiration, hope and positivity.  I really hope that it helps you too.  You are definitely not alone.

Lee 2 x

Hi Chelle, Yes you are right about the night shift!

Here I am at ridiculous o’clock as usual!

Hi PT

So sorry about your diagnosis. I was told that I have incurable bowel cancer last year. The oncologist said the worst case is around 18months . I was initially also depressed and sad. This is completely normal. You are going through all the stage of grieving. Over time you will able to accept your situation and get on with living well every day. 

I think firstly you need to contact your team and try to manage your pain better. It impacts your daily quality of life. Could you also ask your CNS for a referral to a psychologist, they can help you to talk through your emotions and improve your mental health. 

I personally think I have no real control over the biological aspect of the cancer. What I can control is how I react to the situation and how I can live my life each day. Of course it is sad and worrying that I have a much shortened life expectancy but it is also freeing. Because I can focus and living in the present. 

Take care

Stella x

I so agree with you Stella! 

xxx Kate

Welcome sweety....join this family..they are amazing and very supportive. I only joined a couple of days ago..they are so friendly

Join the chit chat

And make each day count

And I agree with everything the others have said...just a bit tired to write much tonight

Hugest hugs

Thanks everyone -  great positive advice.

Made me feel better.

Saw palliative nurse yesterday.

No joy in upping pain meds.

I said it might allow me to go out, for fear of pain becoming so bad I return home.

She's just changing liquid shortec, to the tablet form just so I can take out with me.

Upping the oxycodone doesn't help at home but makes me woozy.

So I cannot see how it will help outside as dizzy head will affect outside travel.

Have a great weekend everyone  ️ 

I don't know much about pain management but I worked with a woman who had injured her arm so badly that she was never without pain. The mixture of pain meds she was on was unbelievable. She has to live with this pain and she was sent on a sort of course of how to manage her pain and how to get the most out of her meds. She said it was the best thing for her. 

So just throwing this out there if anyone needs or wants yo ask their medical team about it 

Hugest hugs sweetheart 

Hi PT ,  I am sorry about your pain.  I have mets in spine, ribs, pelvis skull etc.  It is my back that hurts the most.  I am on tramadol which works for me.  Oncologist prescribed morphine but I didnt like that.  Can they not change your pain meds.  Take care and enjoy the sunshine x

Lee 2 x