34 y/o guy - stage IV bowel cancer

Hi All,

My name is James and I was diagnosed with stage IV bowel cancer in June 2020. The initial prognosis was grim but I’m still here!

Sometimes I feel completely lost and terrified. If it wasn’t for the support from my family and friends, I would have given up by now.

It would be great to speak to others who are going through a similar experience. It has been extremely difficult to say hello to anyone whilst having chemo due to the Covid restrictions…

Wishing you all well,

James

  • Hi 

    Welcome to the forum ! Glad you joined in the chat  ! I have to pop out for a little while so will post more later to you but just wanted to say my mum went through the most intense part of her stage 4 treatment back in 2009/2010 without the additional pressure of the restrictions from covid and watching what you have all endured has been heartbreaking! I am hopefully in the next few months things may improve but it’s been an additional layer for you all !

    However I have to collect her shopping and with that you will have gathered she too defied the prognosis and kept pushing forward !

    How is your treatment going ? 
    There are a few avenues for support in a stage 4 setting and will link in another one in a bit just in case you have not found it but it’s good to build in some outlets !

    take care ,

    Court 

  • Hi James

    I am also stage 4, spread to the liver.  Have had shrinkage from chemo and now on a little break before some more chemo and radiotherapy.   

    Horrible isn't it, feel like I'm on a ride I just want to get off.  There is lots of support on here though and I also joined the Bowel Cancer UK forum which has loads of stage fourers doing really well on long term treatment. 

    As  says, her mum is doing really well despite the stage 4 prognosis, fingers crossed it will be the same for us.

    Take care,

    Michelle 

  • Hi Court,

    Thanks for your message. It’s very reassuring to hear that your mum has done so well, it gives me hope!

    Along the way I’ve had so many setbacks and have been told awful things by unsympathetic consultants. I started off with such a positive mindset but I felt as though they were all trying to grind me down and tell me not to be too optimistic.

    Anyway, I’ve already defied what they initially told me and my latest scans show I’m responding well to treatment, so all I can do is keep going. I certainly feel much better than I did this time last year.

  • Hi Michelle,

    It’s horrendous. Impossible to imagine how bad until it happens to you. Every time I go in for my treatment I look around thinking to myself why am I here?

    I was active and healthy 18 months ago. Now I can’t work and some days find it hard to even get out of bed. 

    I’ve been started on immunotherapy now after having radiotherapy, chemotherapy and major surgery. I’m scared to say it but it seems to be working so far as I feel much better :)

  • Same here, I'm slightly older at 46 but still find it hard to believe I'm even in that waiting room!!

    Have you had a liver resection?  I was refused by my local hospital due to the extensive spread, am waiting on a second referral from Basingstoke (NHS) and have also approached a private surgeon in Leeds, got a zoom call on Fri,  am praying he will agree to operate.

    Good news you are responding well to treatment, long may it continue!

  • So sorry to hear that  there was  a lot of “ reality checking “ experiences along the way for my mum too and it was so draining!

    You sound as though you have a good team behind you and that’s pretty powerful in itself !

    Delighted to read you are on Immunotherapy we are seeing some very positive signs on the forum with it . You might like to read  and  stories to get a bit of encouragement as they have been using it for a while with good results !

    So pleased you are seeing a good response! I have been watching it in the states for the last few years . So good to see people getting access to it now ! 
    It took a couple of intense years to get on top of my mum’s disease !

    Take care ,

    Court 

  • Same stage 4 cancer. Been a hell of a journey so far and many tears tantrums along the way. On chemo now as could not have radiation as tumour in a strange position and large. Doing ok and keeping positive. Keep positive and take it step by step.