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nowayback (@nowayback)

Oesophageal tumour

Head & Neck Cancer | Last Active: Dec 9, 2018 | Replies (14)

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@alpaca

Hello @nowayback You have a devastating story to tell. Cancer is always a rollercoaster but you have been up and down more than most. I'm a head and neck cancer survivor so far and can eat soft foods. Some of my friends are tube fed. I don't know anyone who has had the esophageal cancer you have had but there are many things that go wrong with head and neck cancer surgery too like free flaps failing, fistulas forming etc. It is traumatic, disfiguring, disabling. I really do understand the horror of it all.

It sounds as if there is a slither of hope for you to have more reconstructive surgery but as you yourself say, it's important to be realistic about it. There will be esophageal cancer support groups on the Internet. As a patient you can write to the people in the UK who have carried out the surgery on others. I mean by this that you can sort of empower yourself by doing your own research, making your own inquiries. That might sound too hard, undoable, but having a sense of agency might help you cope. The fact that the medical team has given you this possibility is something.

The other thing is having as much psychological help as you can get. You have been through the mill and need and deserve every bit of help you can get. I have found it helpful to join cancer support groups both local face to face and online. Wishing you well.

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Replies to "Hello @nowayback You have a devastating story to tell. Cancer is always a rollercoaster but you..."

Hi Maureen
Thanks I appreciate your response also. You have probably seen my reply to Coleen.
I understand your comments about trying to be able discuss matters with people that have had similar problems but unfortunately there doesn't seem to be anyone. I have asked my consultant & been told that my situation is 1 in hundreds of thousands so very rare indeed. They are trying to put me in touch with someone though so hopefully that would be beneficial. Where I have been ill for so long it's also the impact socially as I don't really want to mix with people due to my constant coughing up snot & saliva I just don't feel comfortable being in that stat in public or privately with friends & relatives. I've noticed anyway that I am becoming more & more isolated as people visit less & less. I am reluctant to go out due to the way I am so have less & less in common with people & so it goes on. I am still waiting for psychological help due to long waiting time & just feel I am going further & further down in my mood.