Chemo starting....

Hi Katie, your right, 9 months or chemo is no choice, but it is the way to a cure. Grasp it with both hands and be guided by the experts.

Being told that fear of the unknown is normal by me won't help I know. The answer is to talk, ask questions and learn about your situation so that it is not unknown. Your past that waiting for news period that I'm in and now have a way forward.

I don't know about the chemo side effects as I am not at that point yet. I don't know what my future holds at the moment and that is scary. I should get the answers I need on the 19th. Until then I am keeping busy doing stuff I like, trying not to think about it. At the moment I have slight difficulty swallowing and am trying to eat stuff like mashed potatoes, porridge and other soft stuff. Washed down with copious quantities of wine and gin and tonic....lol 

My thoughts and best wishes are with you. Please keep posting your story and your experiences for those of us following in your footsteps. It quite a long and tough journey but the outcome will be positive I'm sure. Lean on those around you for support.

Hi Katie I had pre opp folfox ever 2weeks (4 cycles) and found it ok ,day 3and 4after the chemo were the worst mainly fatigue but after that felt better and after the 2nd cycle of chemo I could swallow much better ,the opp although obviously major was nowhere near as bad as I thought ok 12 days in hospital but no real pain ,I was up and walking after 3thd day ,then post opp folfox which I found really tough but am now 1mth after and am trying to get fit and looking forward to the future, I believe staying positive is the key ( some days easier than others)  worrying changes absolutely nothing , just tick off each treatment as you go and rest when you need to ,the very best wishes and feel free to ask questions even if they sound silly   X

Thank you Ade for your reply, it doesn't sound too bad so hopefully I will be like you fingers crossed.  Can I ask did you lose your hair ( I know a vain question!!).  Also did you have any diorahea as a side effect?  And you're right being positive is the best way to be, I've been keeping busy in my craft room - I make handbags - so have been doing that to keep my mind occupied. Can I ask did you have your oesophagus removed??  I have to get mine removed and as I have no bowel left to use I will end up with a stoma & bag on my neck.  I'm a bit scared of the recovery as they said it would be painful as they have to open me up in 3 places, my abdomen, my ribs and my neck.  But as said I really have no choice but it helps to be on here with others in my position.  You take care x

Thank you GeoFerret for your reply and advice and yes I have been asking a LOT of questions as I like to know exactly what I am facing.  And I know exactly what you mean about the waiting - I hated the waiting on results etc and at least now I know what will be happening going forward.  It's just how will I be after the operation.  I have to get my oesophagus removed and as I have no bowel left I will be left with a stoma and bag on my neck.  I don't think there are many people who have had this done so I can't get advice on that hence my apprehension.  But it is my only choice as the alternative of 9 months is not an option.  I'm sorry to hear about your difficulty swallowing - know what that is like but yes the gin & tonic would help lol...  My husband said at least I will never suffer a hangover ever again as the alcohol will go straight into the bag!!  Sense of humour my hubby has....  My thoughts are with you on your journey and all I can say is keep busy as you've been doing and let us know how your journey progresses.  This online community is a great help as you don't feel quite so alone.  Take care and good luck for the 19th... 

Hi Katie yes I did lose my hair but to be fair ther wasn’t much to lose  diarrhoea can be a problem but they give you tablets to control it ,I had 2/3drs of my oesophagus remove and most of my stomach I was also put on a feeding tube that goes into my lower bowel which has really helped but I’m eating most things now just much smaller amounts , as for the pain I was in the QEbirmingham and they had there own pain management team who were brilliant and I can honestly say I had no pain whatsoever , good luck and always ask questions  x