Hello

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Hi I just wanted to introduce myself I’m Clive I’m 49 years of age, a farther to 4 children and grandfather to 1 granddaughter.

Back in March 2018 I was diagnosed with stage 2 oesophageal cancer. In April I underwent ECF (Cisplatin-Epirubicin-Fluorouracil) chemotherapy that lasted until June then in July an Ivory Lewis procedure to removed and treat my tumour, after this they also upped my staging to stage 3 because of lymph nodes that were discovered to be affected. Then in August on to post op ECF chemotherapy completing my treatment at the end of October.

i also took part in some clinical trials with a targeted chemotherapy trial, although I don’t know a great deal about what it was or any results as the trial stopped when I had my op and started taking morphine. They did some research on my tumour and straight after my op they took samples of my phlegm. Sounds strange but I believe it was about pain management. All I recall was weekly phone calls from the trial providers asking me a series of questions.   

I'm 6 years post op and starting to feel normal again.i work as an industrial firefighter which is a demanding and challenging job!! It took me 4 years to recover enough to return to full fitness, but with time and effort you can achieve your goals. 

My hobbies are bird watching and bike riding but not together the bell scares the birds off, I also enjoy some degree of fitness when I’m forced. 

I enjoy time with the family whether that be at home or on holiday enjoying the sun. I also love socialising and enjoying a good night out.

My partner used this forum to answer questions and to look up things I didn’t under stand, I also used this as a filter as I didn’t want to read the bad stuff. One thing she always said there wasn’t much info about people’s long term recovery, so I hope to fill in some of that gap if I can.

Think that’s all for now, but happy to answer any questions and support where I can. 

  • It is great to hear from people a few years down the road so that we know what we are aiming towards. Thankyou for posting. CB

  • I think your contributions to this forum so far have been encouraging and thoughtfully worded and sensitive to those not on the same pathway. 
    May I add a group of patients for whom your accounts will be of value to.  Not only those who have, given the choice, elected for Surgery, but those who are considering it. 
    Possibly because I was borderline fit for Surgery there was great emphasis on the impact it has on QoL and its inherent risks.  And part of me is relieved that the choice to have it was taken away. 
    So I believe the more thoughtfully worded, encouraging experiences of surgery on here will help those in a position to decide if they want to proceed in that direction and not only those already on the pathway. 

  • I mean yea happy to help anyone,

    Being a bit naive but people chose not to have the surgery?

    It’s always my concern while on this group is not coming across the wrong way. I’m always conscious of some people who don’t have the same option as me, My mom and sister was the same also a dear work colleague they all were to advanced for surgery. For them it was just about making the most of the time they had. 
    cancer has hit my family hard over the last 6 years so hence me wanting to give as much back. 

  • Great to have some good news and hope and inspiration to us all.

    My operation was carried out in August  2023 and my stomach  was removed . Its not been a easy ride still suffering  with bile but not as bad . Eating things that you would never think you can with out a stomach.  

    I understand  everyone  path on this journey  is different.  But we all carry hope for  each other stay strong  and stay safe 

    Nic nac

  • No you are not naive. Far from it. 

    Yes speaking generally for most interventional therapies medics require informed consent from patients after providing a risk : benefit. 

    Perhaps you were not given a range of options from doing nothing to what is recognised globally as the gold standard treatment? 

    Choice I guess is driven by statistics with the many opting best chance of survival considering it as a “no brainer”

    However - there are many prognostic factors with this disease and many patients are elderly and, for some, considerations of quality of life vs quantity of life come into play. With in some cases not a huge difference in the statistics of overall survival. 

    But I think hearing good outcomes of surgery from people like yourself is more impactful than cold statistics when making such an important decision. 

  • I mean yea I suppose I was given a choice, but for me ‘what the hell yea’ was always going to be my answer  

    Even at an older age, if they recommended it then it would be a no brainier. 

    At the time I had mine there was a woman in her 70,s  who had the op, slightly different procedure and less evasive, the next day she was up eating grapes, so there are always alternatives. 

    One thing that always resonates with me is my children never saw me cry, even after being diagnosed I always well almost always mindful. And I have no idea why!

    That was until my daughter told me she was pregnant to her first child that they had been trying to get pregnant for ages. I sobbed my heart out (pure joy) I even remember her saying “Dad what’s wrong” it was completely unexpected  

    I would never of heard her news had I chose a different path. No amount of being sick, struggling to even get of the sofa can ever make that news not worth hearing. 

    So when people say quality over quantity surly quantity is quality.