Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Found out yesterday

SheStoodInTheStorm
Posted by

Hi all, 

was told yesterday that I have a reoccurrence and that it isn’t curable. Treatable with chemo, on average people get 12m. I am finding it hard to process. I have a five year old - what is she going to do without me? 

Was expecting bad news, that it’d come back, but not that I don’t have long left. It just doesn’t seem real and I’m not sure what I should be doing. 

Is anyone here in a similar position? 

Alive
Posted by

Hi She Stood in the Storm,

take a deep breath and calm down. You have had an awful shock and need to give yourself time to let all that sink in. You still have hope and a life to live. 

I am sure that you will be given lots of advice from all of us on here. You are not alone. We have all been where you are now and it is unbelievably hard to adjust to, but you will. My advice is to take it easy and wait for the wheels to start moving. In time you will find out more and more and will become an expert on your cancer. Loads on here are well past there sell by date and still going strong. It seems that there are breakthroughs and new trials all the time and treatments are becoming more effective. Try to build in nice things that you enjoy and treats with your child. You will be making precious memories for them. Most of all give yourself things to look forward to as often as you can. It really does make all the difference. It’s not easy but keeping your spirits up will help you so much.

it will get easier to live with this knowledge, it just takes time for you mind to accept it. Above all don’t give up hope. The doctors do get a shock sometimes when we make it through. 5 years ago I was told I was incurable but last week I was told that I’m not anymore, my cancer is inactive now. I just wanted to give you a little hope for a future.

I wish you all the best.

love and hugs 

Maggie xx

daloni
Posted by

Hi

Welcome to the club no one wants to join but that becomes a lifeline for so many of us. 

I was told I was incurable three years ago. The mortgage life insurance paid out as I had less than 12 months to live. Yet here I am. I’m on a clinical trial now and it’s keeping a lid on things. 

Maggie has given some excellent advice. Stay in the day and find something to enjoy each day. It can be as simple as a cuddle or a cup of tea or a beautiful flower. Sweat the small stuff. Say yes when people offer help. 

There are some practical things you can do. A referral to the hospice might sound scary but in my experience the ethos is all about helping you to live as normally and fully as possible. A call to the Macmillan helpline to speak to their financial adviser is also probably worthwhile. 

I kniw it’s a scary time for you right now. Things will settle. For now, breathe in, breathe out, repeat. 

With love and the gentlest of hugs 

xxx

flowerlady
Posted by

Hello

Do you have family, friends, colleagues who you can confide in? Gentle support and company can be of great help.

X

Flowerlady x
stonedcold
Posted by

Similar situation here. I had treatment for tonsil cancer and lymph nodes at the beginning of 2018, just started to get a bit better and then last month found out it had returned to my larynx and lungs. And there is no cure. I’ve just started palliative chemo but they’re cagey in how long they think I have. I’m 38 with a 3 year old son. We share the greatest bond and I can’t bare to think I’ll be leaving him without his dad :(

SheStoodInTheStorm
Posted by

Thanks everyone. 

I have family and friends, but I’ve always been the strong one and the one to shoulder the burden for everyone. It doesn’t seem real and it’s embarrassing? How stupid is that?

I am so sorry you’re going through this too with a little one. There are just no words. I flirt between totally forgetting, to thinking about the immediate treatment etc and the long term when I’m not here. Even typing that doesn’t seem right. It’s not fair. 

daloni
Posted by

Hi

I am really sad to hear about what you’re going through. No words, really. Just a ((((hug))))

xx

daloni
Posted by

Hi

Embarrassing? I kind of get what you mean. I am legendary for being strong. And an inspiration but let’s not go there. Even as I lie on the sofa, unable to make my guest a cup of tea in the aftermath of a chemo session, they tell me I’m so strong and that they couldn’t do what I’m doing. Seriously? I usually just ask “what’s the choice?”. It doesn’t feel strong or brave on this side of the fence. 

But back to you. A few days ago your life was headed along one track. Since being told that the cancer is back, you’re on a different track. It’s a massive change and it’s not one you’d ever have wanted. It’s time to let your friends and family look after you. If you’re the strong one, that might not be easy. It certainly isn’t for me. 

Xx

tvman
Posted by

Hi Daloni

You're a diamond, and as strong as one!

Tvman xx

My philosophy is simple, love life and family.
Button16
Posted by

Hi

im 39 with a 2 year old and was diagnosed staight after my little one eas born and told i had 3 days, that went to less than a year and im still here!!

Its horrible getting that devestati g news but i would say just live each day best you can, dont be too hard on yourself when you dont have the energy and thinl about all the things you've seen your little one do. I used to get so so so upset about all the things I'll miss out on but now i cherish everything that my daughter does.

We are all here for you to chat to, moan at as we have all been there. I've found such comfort on this site and the people on here are so good at the helping and they always seem to to say the right thing.

I hope today is a better day

X

SheStoodInTheStorm
Posted by

Thanks - how did your prognosis change so much?!  It’s nice to hear a positive story. 

Thanks to all for taking the time to reply x