Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

What will the future hold ?

Little1
Posted by

My precious husband was diagnosed with Stage 4 inoperable oesophageal cancer in October and has completed 3 cycles of EOX chemotherapy with some difficulty and many hospital admissions. His CT scan showed a good response to the chemotherapy and it has been suggested that he tries to cope with 3 more cycles. I find it all so difficult as we feel so isolated when he is so ill after the iv chemotherapy and the hospital admissions are horrible as there is no capacity on the Oncology Ward and he ends up in any Ward with a free bed. One of my biggest concerns is what the future will hold and what to expect. I can hardly bear the thought of more chemotherapy and the horror of coping with the hospital system and severe shortages . I would happily pay for a bed on the Oncology Ward . On one Ward I had to offer to dispense his drugs as the staff had no idea what to do . 

I would very much appreciate anyone with a similar diagnosis who is willing to share their story getting in touch and advice on coping with a hospital system that is significantly compromised because of lack of funding. 

Poppy4
Posted by

Hi so sorry to hear this. When my husband wa getting treated for stage 3 colon cancer we were lucky that he was able to get the best treatment and as far as we were aware funding never affected his treatment. Could you ask for a referral to another hospital if you feel his treatment isn't adequate?

Sbt123
Posted by

Hi there. So sorry to hear this, but pleased the docs think it’s worthwhile to keep going. I always say to my dad when he feels like giving up, they must think it’s worth it or they wouldn’t spend the money.

My dad reacted badly to chemo and was hospitalised each time. The last one they changed the cisplatin element of the chemo to carboplatin, which is an older drug, but a little less severe. Also, my dad was given a 24 hour syringe driver with nozinan ( levomoprozanine or something?) which helped with sickness. Also, Dexamethasone steroid tablets for sickness and appetite. I wish my dad had been admitted for a few days each time he had the chemo, and put in iv fluids. I think this would have helped greatly, rather than going home and hitting rock bottom before being admitted.

my dad’s diagnosis was slightly different... in the sense that it was ‘curative’, even when the cancer returned after 3 years, though surely chemo is chemo at the end of the day.

i hope he copes with it better the next round. It’s so bliddy hard!

sarahx

Little1
Posted by

Hi Sarah, 

Thank you so much for being willing to share some of your story. It was most helpful particularly your comments about the difficulties after chemotherapy. My poor husband has just had his 4th round of iv chemotherapy and once again by the time we got home he is really unwell and I so wish they were able to admit him as an in patient for a few days just to help with the most difficult side effects. I am almost sure he will end up back in hospital again and there are never any Oncology beds which makes the experience so painful and sub optimal. I understand resources are so short but faced with a terminal diagnosis it is so painful and distressing. He is coping so very well and the CT scan has shown an improvement but I am really struggling with it all. 

Thank you again for getting in touch . I do understand your distress and feel so sad for you too. 

Regards, 

Jane .