3 years on and going strong!

Hi all,

So it was 3 years ago this week that I started on the cancer train.  It began with what seemed an innocuous ultrasound on my neck to examine an odd little lump and quickly snowballed into a diagnosis of a very rare and little known skin cancer that had already spread to my lungs.  I was told they didn't know how to treat it and it seemed like a death sentence - an absolute torrid time.  I thought my life was over!

3 years on and life is pretty much back to normal! I have a few scars, some itchy skin and plenty of regular hospital visits but thanks to a clinical trial that I have been on now for 2 years I am very comfortably living with cancer and enjoying the everyday mundanity of life with just a bit more appreciation! 

I will never forget the desperation of those first few weeks after diagnosis when I would spend hours searching forums like this for messages of hope from others desperate for some positivity.  I wanted to share my story in the hope that someone reading this now who is in that situation where I was, can see that it's possible to get through the darkest of times so never give up 

  • Hi and welcome back Hippochick!

    That's great news :-) 

  • Hi Hippochick,

    thank you so much for posting this. My mum is currently going through another cancer diagnosis 16 years after her first, and can't seem to see a light at the end of the tunnel. I keep telling her that a cancer diagnosis isn't a death sentence and treatments and plans have improved so much that there is always hope; it may not always be curable but it is treatable. 

    this post was just what I needed to read today after having a "wobble". Waiting for scans and results is such a worrying time. Thank you again. 
     

    best wishes,

    Roo xx

  • Thank you for posting. I am in a similar position to where you were 3 years ago and  it gives me hope to read posts like this.  

    Am staying positve and hope to be able to post my on survival story on here one day. 

    Georgina 

  • Thank you for posting this, I was diagnosed with lung cancer last week (at 48 and having never smoked) and am in desperate need of some positivity...

    Really pleased you are doing so well.

  • Hi Roo.  Thanks for your reply. It's great that your mum has you to support and reassure her.  Lots of love to you both xx

  • Hi Georgina,

    Thanks for replying and I'm sorry for the position you are in.

    I read your post on needing some hope - good on you for staying so positive when others around you are making it so difficult!

    It was quite a shock for me to discover how much you need to do for yourself and that doctors, the ones that are supposed to know how to make you better, actually don't know very much at alI, particualrly when it's a rare type of cancer.  I was fortunate that my oncologist knew that too and so didn't make rash decisions about my treatment.  She took a very considered approach which, fortunately for me, resulted in me being referred for molecular characterisation and then eventually to the trial I'm on today.

    Are clinical trials an option for you?

  • Hi!  Thanks and you're welcome - I'm glad it helped even if just a little bit.  Best wishes and love to you for the next part of your journey and treatment.  It gets a bit easier when you have something to focus on xxx

  • Hi thanks for your message. I have also realised how little the doctors actually know and that the "doom and gloom" predictions they give me are nothing more than them repeating average statistics. 

    I am hoping that I will be able to go into a clinical trial once I have finished chemotherapy. It doesnt seem to be an option where I am currently being treated but there is a specialist cancer hospital/research institute nearby that I am hoping my current oncology team will agree to refer me to. 

    I am glad that the clinical trial is working well for you. Do you know how long you will be able to stay on the trial for?

    Georgina 

  • Hi there,

    Very encouraging Hippochick, thank you.

    I am going through the waiting for results, worried that the cancer has spread, surgery and treatment to look forward to. Is my life over in my darkest thoughts? Maybe not and there is a silver lining.

    I also worry for my partner who is such a support and comfort and its all about me, I'm very lucky to have him by my side. 

    Silver x 

  • Hi I am so Glad to come accros this post,and very happy with your great news,

    I was diagnosed about 9 weeks ago with lung cancer, I'm due my 3rd chemotherapy this coming Wednesday all going good with my bloods,

    My biggest problem at the moment is This whole thing Has me in constant Fear, Anxiety and Chronic panic Attacks, Feel Like I'm Losing My Mind, I'm doing ok on chemo so far,no sickness, very little side effects besides tiredness and a few aches and pains, my Children or friends Can't understand how my mental health nis so affected as they keep telling me I look great, I Wish my mind was, infeelmif I could Control the anxiety and panic Attacks I'd be flying it, it's so scary, Any Advice on how to manage this would be so appreciated, ive lost all my hair after my 1st session, but that doesn't bother Me, in the least, it's only hair and hopefully il fight this cancer and it hair will grow back, much love to you,xx