The waiting game

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I am sure everyone here has felt the same. Following a gastroscopy last week I have been told I have cancer at juncture of oesophagus and stomach. I had no idea that the symptoms I have of feeling full and lots of wind were indicators. Now waiting for CT scan and to find out if it is treatable. The ups and downs are very wearing as otherwise I feel very well. Just need the opportunity to sound off a bit as my spouse is quite emotionally fragile.

  • Hi and a sad welcome to the forum. I was diagnosed with the same as you last March. I am now cancer free and finished my treatment last Christmas.

    If you click on my name it will take you to my profile where you can view my talent diary. Or Johnnie may not be the same but should be similar and my diary will give you some idea of what to expect and the timeline.

    Good luck and best regards

    Geo.

  • Hi Geo, thanks for the reply. So glad to hear that you are now cancer free, that really helps. It is the not knowing if mine has advanced beyond the oesophagus I am finding hard. I dare say it is the same for everyone   waiting for the next appointment and piece of news. Thanks for the positivity I need it at the moment.

  • Hi. Two years ago I was in the same position as you. Three times I went to a meeting at the hospital to find out whether or not my disease was treatable. The third time wasn't too bad because they told me I would meet the surgeon so I guessed I was operable. Like Geo I have some more details in my profile.

    I coped by making sure I went walking. A couple of miles away at the end of a beach is a rock I would sit on and think about life and death. After some time thinking  I would just start to enjoy the waves, and breeze, and often the sun. Then a nice walk back home.

    In the end, it was the fact I felt so well that made me hopeful. I was fitter than I had been for years and I read that cancer is often detected after someone has had months of feeling tired and ill. Apart from not being able to eat solid food I felt great. The fact that you say you feel well is a very good sign.

  • Hi, thanks for your response. You have inspired me to keep up my fitness. I also live in NE England. I generally don't do much exercise apart from walking but all the info I have had so far is that being as fit as you can helps in every way. I do find the not knowing very difficult though as I am sure everyone in this situation does. It doesn't  help to know that waiting times for cancer treatment are the worst in recent years. I too like to read all the info even though it is scary at times. May I ask if you had you symptoms for very long before you sought medical advice?

  • Hi Sun24. Reading your message took me back to May last year when I was told I very likely had Oesophageal cancer. As you say, waiting for scans and results is extremely hard. I know the advice is not to google but I decided to read as many positive stories I could about people who had defeated this cancer. These were to be found on the Oesophageal Patient Association site and this one. I often would read and re-read these accounts to help me feel more positive about my situation. I also found in the early days, listening to the cancer section of the ‘Headspace’ App  beneficial, particularly at bedtime. It would help me feel a sense of calm and control.
    I initially went to the Doctor because I had started to notice that occasionally I had difficulty in swallowing food. Thank goodness I did.
    Since my treatment and eventual operation last October I wrote a blog. This sets out my story. I hope that if you decide to read it, you can gain something from it. I will be thinking about you over the following weeks. With best wishes, Julie

  • I remember that I had to throw away a Greggs sausage sandwich on my way to Manchester because I couldn't keep it down (obviously in the NE Greggs is important). That was towards the end of February. Diagnosed 10th March so no, I quickly read up on the symptoms and realised what the likely problem was. In retrospect, I had had a problem on the previous Boxing Day, but I assumed it was me giving myself food poisoning rather than just a blockage in my oesophagus.

  • Hi there, thank you for replying. It really does help hearing other people's stories. 

  • Hi thank you for sharing. I will try the Headspace app as I only sleep in fits and starts.

  • Hi sun24

    just finished 12 months treatment for breast cancer , last Friday l was diagnosed with oesophagus cancer at the junction of the stomach. They told me that the results were inconclusive but further testing showed cancer I am now waiting for appointment for CT scan to see if it has spread and to find out what treatment I will be having.  I know from my breast cancer this is the worst part the waiting the only thing I do even when l went through my breast cancer is try to be positive and put it at the back of my mind. I do plenty of walking and keep myself busy 

  • Hi. I appreciate your contact and so sorry to hear about your experiences.  I had a poor day today emotionally as I am so anxious about appointment with consultant and getting scan and biopsy results. Every day seems like a week as you know.  Am trying to concentrate on there being some treatment options. My best wishes to you on your journey