I have diagnosed with Esophageal Cancer too and would like some dietary advice, in particular using the Waterdrop product to give flavour to water. It is a plant supplement, so should be safe, as it is not an artificial additive. Can anyone advise?
Hi. Welcome to the forum. You have left us a bit in the dark as to what stage you are at. Diagnostic, treatment etc ? Can I suggest you fill in your profile and then perhaps we can help with some conversation. There is a lot of experience available on this site.
Hi Sid, so sorry that you've found yourself joining this club. This is by far the best place to get advice and guidance from those that have already gone through the journey or are travelling it alongside you. Don't do the Google thing!
I used my profile as a sort of diary so that others could maybe see what to expect. I say maybe because all oesophageal cancers are not the same and therefore treatment might be different.
I was diagnosed in March 23 and now doing OK. I do however have a secondary cancer in my upper right chest but that has also been treated and while it hasn't gone, it's behaving for now...lol
My initial treatment was four rounds of FLOT chemo followed by surgery and then another four rounds of chemo. I'm not going to lie, it's really hard to cope with. The chemo made me feel really poorly and i ended up in hospital because of it but it did its job of shrinking the cancer and made it easier for me to swallow. After a few weeks of recovery i went for surgery to have the bad part of my oesophagus and most of my stomach removed. I was 9 days in hospital after surgery but some take longer, you become prone to infections and the like. Several weeks later once your recovered from that they hit you again with more chemo.....oh joy of joys....lol.
I know nothing about you but please try and keep fit and maintain what muscle you can. You are going to lose weight, (and your hair). I was massive at 24 stones when diagnosed and have gone from a 46" waist to a 32". I am now steady at 10.5 stone. Get your wallet out in readiness for a new wardrobe...lol.
The change it causes to your eating habits after surgery is tremendous. I can only eat very little at each sitting and find myself grazing all day rather than set meal times. It drives the wife crazy but at least I'm still here. Since diagnosis i have become a great grandad to two of the lovliest children you could wish for. A boy and a girl.
Anyway I've waffled on for long enough. You will probably make some good mates on here. I have several who i have met on here and in hospital who i have stayed in touch with.
I don't come into the forum very often now. So good luck with your journey. I'm sure you will find the advice you need. Please use your upper GI cancer nurses whenever you need support. They are irreplaceable.
Thank you!, I am having 4 rounds of FLOT chemo before hopefully being eligible for the Op to remove tumour in my esophagos and one lymph node. After an Op they say four more rounds of chemo.
Your story fills with admiration for your strength and hope for my journey.
I have been asked to post a profile, but cannot see a profile button on this site.
Hi Geoferret. Good to hear you’re doing okay. Congratulations on your ascendancy to great grandfatherhood. We welcomed two new grandchildren into our family during my treatment and number 5 is due in May. I am eternally conscious of the fact that, if I hadn’t been offered the curative pathway that I was (brutal and all as the journey was) then I might have missed it all. I don’t get routine scans as I am not part of the Sarong trial so I just have to carry on assuming everything is ok. Wow, that is some weight loss!! I am actually now only 5lbs below my starting weight and seem to have settled into a weight of around 12st 5lbs. What symptoms, if any, did you have for your secondary cancer? Best wishes, CB
Hi New, It does take some strength of character to get through this for everyone affected. The treatment and side effects are as individual as the disease itself. I hope you have a partner to lean on. I was so lucky to have my wifes support and guidance at every little hurdle. Dont forget the uppr GI Nurses are always on the other end of the phone. They have always been there with advice and support. Use them as and when you need them. I cant praise them enough. 3 years along and I still call them if I have questions. If you click on your name it should take you to your individual profile. There should be a green button on the right to edit it.
If you click on, "Geoferret" above it will take youto my profile. I wrote mine as a sort of diary so that others could read it and have some idea of what to expect. I think you can write a blog too, about your journey. It helps to get things off your chest and helps others too.
Because there is so much information, I found it useful to keep pen and paper handy to make notes of all sorts of stuff. I wasnt sleeping very well because my head was spinning with everything I was being told and the worry of it all. Making notes made a huge difference to me.
Good luck to you. Keep strong and positive. The change to your life is going to be immense but you soon come around to your new normal post surgery. There is light at the end of the tunnel.
