Newbie

I was diagnosed with incurable cancer at the start of Jun3, and have subsequently had 4 of 6 chemo sessions. I have oesophagul stomach junctional cancer (small cell so relatively unusual) with liver mets. No other spread and all tumours are responding well to carboplatin and etoposide, with lymph nodes having reduced swelling.

What I struggle with is the incurrability, and what that means, they can't tell me as treatment is ongoing. I have a wife and an 11 year old (I'm 53), and whilst accepting that this will end my life, I struggle with the not knowing. 

After the 6th session, I may need radiotherapy dependent on tumour size and then that's the end of treatment. I will be on 12 week scans and when things get worse, then I suppose I may b3 offered further care, but my nurse team won't talk about that yet.

I am focused on recovery, I am healthy and fit, coping well with chemo and accepted the diagnosis. I am focusing on the here and now, but also living life as normally as possible, I am off work but will be back in Nov. 

Any suggestions or help welcome on 'dealing with it".

Thanks

Liam

  • Hi Liam (Bryson) Welcome! We have just come back from a four day break, so I have just read the posts here! We probably all have different cancers but are all in the same boat. As Ellie and others have said, it is up to your Team to do the very best they can for you and I'm sure they will.

    I have taken things a day at a time, right from the beginning. I've always been a cup half full person and this hasn't changed that. I do understand why your Team are taking it a stage at a time as that is enough to think about! No one knows what's going to happen next year, next month or even next week. You are spot on by doing exactly what you are told to do and taking things day by day! Good luck!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • I am loving this sentiment. I had a full melt down last night. Just thinking about the end point. But reading these threads has need so helpful and reminded me where I was at the start.

    At the moment I am physically fit, no pain, off work and able to do anything I want to. Someone else said thay they only focus on the following week, and whilst I am like I am o have to make the most of life.

    Yes, there are dates in the calendar when my future will become clearer, maybe. But I cannot dwell on them. They are not next week, which is a mystery to me.

    Thank you for the supportive and helpful words.

    L x

  • Hi Liam, just noticed your post, I'm sorry to read your problems, but we all go through it.

    Everyone on the planet is going to die they don't know how or when, and neither do we incurables, being an incredible is pretty good, as we are treatable, cancer med get better all the time, so hope is eternal

    Put cancer on the back burner and you and your family live life to the full.

  • I went for a morning work today, and had positive thoughts, I went through exactly what you said. We will all die, just we will leave people behind, who love us dearly and I have sorrow for them, especially my 11 year old.

    So, living day by day, living life to the full, as you say not thinking about the cancer. It is not impacting my daily life at all currently.

    I think you have a typo, although a very apt one, we are inurrable, but also I agree incredible! We have to deal with all of this, and it can only make us stronger. 

  • Sorry about typo, I have osteoarthritis at the moment it's flaring in my hands and wrists so I use Google assistant to type for me good but not perfect 

  • Actually, I think being incredible is a far better description for all the people in this forum than being incurable! Well done to your google assistant.

  • No need to apologise, you are incredible.

  • All of the replies remind me how great this group of people are. How we lift and support each other. We all know how our minds can spiral off and drag us down but we are there for each other because we understand how it is.

    A bit schmaltzy maybe but it's true.

    What is a Community Champion?

    I am a Macmillan volunteer. 

    Macmillan Support Helpline

    0808 808 00 00 

    7 days a week between 8am -8pm

  • Well do being call an incredible made me laugh, your so right being an incredible is way better than an incurable, so from 1 incredible to the rest thanks and welcome 

  • Hi Liam, I can understand exactly how you feel. I too am incurable. My tumours are fortunately slow growing, which means I am able at the moment, to live a very full life. There is also no treatment for my cancer as chemo and immunotherapies don't work on my type of cancer. I can only pass on my own mantra in that I have to remind myself every day that I am LIVING with cancer and right now not dying from it. I too know that eventually it will finish me off but just not yet! You seem to have become a lot more positive through the lovely replies you have received, so Go you!! 

    Love Sparky