We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

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.

Just want to say Hello

ruthjp
Posted by

Thank you for your contribution I am in a bad place at the moment and it is good to have hope x

Ruth 

Ange398
Posted by

Hi all, this is my first time of posting. I have Mantle Cell Lymphoma. I was finally given the correct diagnosis on the 10th January 2020. I was told I had CLL in July 2019. My last bloods were not good and looking like I need to start treatment. Unfortunately due to Covid 19 I cannot have the full treatment that I need. I’m not even sure that I have accepted that I have cancer. My mind is all over the place. My consultant cannot give me a time frame for the time I may have left. I could have 12 months or 5yrs he just doesn’t know. I’m 59 and my whole life has now been put on hold., especially with Covid 19. I had such great plans but now I ask what’s the point. I’m a fighter but feeling like I need outside family support now. Thank u for reading my post. Xx

MrsH72
Posted by

Hi, sorry I cannot give  you much advice but just to let you know that I know exactly what you’re saying.  Ive just posted a new update on here, you should have a read.  Just wanted to let you know you’re not alone.  My sign off is keep strong, thats getting harder every day.  Family is great but theres only so much they can say.  Im here if you want to talk, im good at listening but again the advice bit at the moment is not good xx

Keep strong x

Snix
Posted by

Hi

I've just joined the group today. I'll probably tentatively post initially. I've not really had discussions with anyone else whose got or had cancer until last week. I had a chat with my daughters future mother in law who had cancer about 14 years ago. Her situation very different to mine, but I found talking to her helpful.  I would love to link in with others going through cancer or who like me are terminal. Although I have lots of friends and family support, I feel quite isolated with the cancer as no-one that I know is facing death and leaving family behind. I'm a positive person and fight to do something fun every day

 I'm not giving in to cancer. I'm living with it. I hope that I will also be able to help others on here by sharing my experiences. 

S Nixy
Rafs
Posted by

Hi Popgate, thank you for your warm welcome and emotionally inspiring personal story. It's 3 months post April again! You sound like a tenacious soldier, it could not have been anything but horrible when you were told you're dying soon. It's cruel and only works to make you panic and face it formidabley. You've taken it, lifted it over your head and smashed it. You put it so eloquently about how each person is affected so differently, you cannot be given an end date. You just have to take that date, show it is wrong, you have no end date. The months you give me is there for focus that I'm going to beat it. Every July you've literally won the war and beam encouragement to all others to please do your best - goals are there to be beaten. So please continue telling your story.. It'll actually help people live longer!

PS. I've written all the above but most importantly, how are you doing, where are you up to?

I have an MRI scan next week. I have an MRI 3 monthly, so we can catch the first glimpse and treat when my tumour rears its ugly head. Obviously with a GBM it's never killed off, it does grow back and catching it early gives me the best chances. My tumour did start to progress in 2018, thankfully it was caught early and I had 9 courses of chemo - temozolomide, the last dose in January 2019. Again a miracle when the tumour went back to sleep. 

Very best wishes, 
Rafs
ellie 73
Posted by

Hi Snix

Welcome to the group, i hope you gain a lot from it, like i have over the time i have been here.

Glad you have family support we all need that.Though i am not sure if they can truly understand how i am feeling at times, every one here can understand, and will support you in any way possible. 

Whether its about treatment, chemo, if you are sad or just need a moan, and we can all do that.

No one asked to be on this journey and thats what i call it, but we are and just keep going along the road, till at some times we hit a bump.

I am sure others will pop in to welcome you, every one is so nice and helpful, like a big family, and hold each other up.

Take  Care Ellie 

"You Never Walk A Lone"

Kath
GeorgiePorgie
Posted by

Hi Snix

I am also new to the group. I have stage 4 cancer  treatable at the moment but not curable. Like you I am not giving into cancer and the s**t it throws at me. 

I also find it hard to talk to people about my diagnosis. I dont want to be the person with cancer who only ever talks about having cancer. 

I have found this forum really helpful. Everyone understands what each other is going through and whatever life throws at us there is always someone who has experienced the same. 

Take care and keep posting 

Georgie. 

Rafs
Posted by

Hi S Nix, I'm feeling emotional with empathy for you and whsy you're horribly enduring. Your tenacity and positive fight is remarkable and inspiring. 

Nothing I say takes away your trauma pain or worries but let me say your positivity and determination to fight this cruel cancer and the crushing prognosis, will absolutely get you through and live on for a very long time. Nobody can set an end date for you. It's impossible. Every individual is affected very differently. I was diagnosed in 2011,with GBM grade 4 and prognosed to see out my last few months. I had brain surgery, 6 weeks radio and 14 months, 5 days each month, chemotherapy. Miraculously it shrunk my tumour slightly. Whilst I'm very aware the nature of my tumour is to return (which it did in 2018). So it's 9 years later. So let nobody crush you with very negative anxiety, you can beat it

PS. Before writing the above, I should enquire about your situation and how you are doing. Please tell me and we shall report progress P. G. 

Wishing you well, 

Rafs

Very best wishes, 
Rafs
daloni
Posted by

Hi

Hi

Welcome to you both. I both love and hate it when new members join. I hate it because it means someone else is facing the crushing news that they have incurable cancer. Love it because each new member enriches this amazing community. If there’s anyone else new I’ve missed out then apologies. I can only blame my memory which, after years of cancer treatment, is not what it was. 

I am going to be brief. I just wanted to add a bit about prognosis and the difference between living with cancer and dying from it. 

I think doctors often give a prognosis because we ask for it, imagining it will provide some kind of certainty. But it doesn’t. There are so many people here who have lived long past their sell by date to prove that. I’ve long ago let go of the question “what’s my prognosis”. 

My other point on the difference between living with cancer and dying from it. When I was first told the cancer was back and the only thing they could offer was palliative chemo, I felt as though I was dying. It took me a good couple of years to wake up to the fact that I was still alive and I would be better to live with cancer. Nothing changed with the disease. It was my attitude that changed. Sure I had been through a grieving process for the life I thought I would have and I was more ready to come to terms with my life as it now is, but it’s a much easier place to be. 

These days a new terminology is emerging. There is cancer that’s treatable but not curable. And then there is terminal cancer that really does mean we need end of life care. Until such time as I need end of life care, I’m living with cancer and not dying from it. 

Rafs
Posted by

Hi Daloni. Your words and how you so eloquently put them rings so true. It is encouraging to hear from such a courageous person as yourself. 

I too am so glad that those who require a supporting and safe community have found us and joined. Warm Welcome and thanks for coming. You can Wright things exactly as they are without being judged. We all want to hear each other's story and experience.

I wish everybody a good day (as good as possible) and hopefully a good weekend too. 

Very best wishes, 
Rafs
Popgate
Posted by

Hi there I am not clever with words that's why I waffle so much I think but so far nobody has complained about me waffling on its just the way I am I can't help it I must admit that when I have a meltdown moment everyone on here gets back to me i honestly don't think I would of made it this far without everyone on here the support and advice you get is amazing my consultant at the beginning was concerned having to deal with cancer living on my own and only one best friend who is one in a million it was my clinical nurse who put this idea to me to join on here as she knows that I don't deal with facing people very well it has turned out to be the best thing I have ever done and have recommended to a lot of people to do as people who have family also struggle to talk about how they really feel I know a lot of people who have said that to me and that's why without hesitation I say come on here if they can put up with me waffling on all the time they will put up with anyone if you see what I mean here I go again waffling on as usual ha ha good luck with your scan next week and hope the results are encouraging and keep fighting on xx

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