surgery

[Jdisney]

my son Jamie is 31 and has Down’s Syndrome. Jamie had aggressive Oesophageal cancer. It has not spread and has had chemotherapy and the next step is surgery. Are there any families that have had family members like Jamie who are going through or have gone through a similar Journey who can share any information on our to support Jamie l would be extremely grateful for any advice shared . Thanks Dawn

[worthbanner]

I had pre-op chemo and radiation followed by the Ivor-Lewis surgery in 2015 and am doing great 10 years later...shooting my age in golf every now and then. Jamie is a lucky man to be a viable candidate for surgery. Finding out what and how much he can eat after his release from the hospital after surgery will be a challenge and an experiment. Reflux may well be an issue and I have found Gaviscon Advance tablets a great help with that.

[Jdisney in reply to worthbanner]

Thanks

[Papanang]

Hi Disney . I went down the same road last April and all I can say is it will be ok . Don’t worry although that is impossible sometimes but for the surgeons to be able to operate is a good thing . You will be guided by a nutritionist who will give you good advise although eating will be a learning curve but is totally doable ,it will take quite a few months for him to adjust with feeling uncomfortable after food but he will adjust over time . I don’t know how severe his Down syndrome is obviously but it seems you may have to take the advise that little meals and often is the way to go . I have just skirted over the journey you will be travelling but feel free to ask me any questions and doubts you will have and I will do my best to give you any help I possibly can .Andy

[Jdisney in reply to Papanang]

Thank you

[Bards]

All comments above chime 100% with my experience. As a ‘Young Gun’ in oesaphageal cancer terms, he may well also be put on supplements post-op. I’m at the youngish end of things, and we therefore have hopefully many years ahead so risk of longterm calcium etc deficiency due to digestive replumbing and/or any Protein Pump Inhibitors given to reduce Acid Reflux issues.

As above, the dietary adjustments post-op are an individual learning curve. Keeping a fairly detailed diet/symptom diary I should have been more proactive with - might be even more so for Jamie.

We all get ‘there’ to the ‘new me’, but it does require patience. Any amount of gritty, stoic determination won’t really speed the journey - indeed can prolong it.

The op and early recovery can be worrying for all - be kind to yourself.

[Jdisney in reply to Bards]

Will do anything for my son to get through this he is truly an inspiration and l am one proud mumma. As they say one step at a time. Jamie’s disability will not stop him telling me enough is enough until then we fight x