Hi, my husband was diagnosed with Oesophical cancer in November, stage 4. His tumour has a pinhole in it which goes through to his trachea and doctors advised against chemo as, if they managed to shrink the tumour, it may result in the pinhole getting larger and could lead to sepsis and other infections. We have been more or less abandoned by oncologists and our GP's don't seem to know what treatment to give him as he is not being monitored so they have no idea what the tumour is up to He has a constant cough and pain in his gullet and is not eating, I am watching him waste away and feel powerless to help him, does anyone out there have a similar situation and if so any advice on how I can help him?
Hi and welcome to the online community although I'm very sorry that you've had to come and find us.
It must be very difficult for both you and your husband to know what to do at the moment. When you say that your husband has "been more or less abandoned" by his oncologist do you mean that he's been discharged or that you haven't had any contact for a while? If your husband has been discharged then his GP is now responsible for his care and he can liaise with other professionals to provide care for your husband.
If he hasn't been discharged then it's probably a good idea for your husband to contact his CNS and explain the problems he's having so that treatment can be arranged. Just because he's not going to be receiving chemotherapy doesn't necessarily mean that he won't get any treatment at all.
If you still can't get to the bottom of why neither the hospital or his GP are helping then you could contact PALS (Patient Advice and Liaison Service) at the hospital your husband was seen at. Part of their job is to liaise between patients and doctors and they can also find out who is responsible for his care.
I see that you have found the carers group and I'm sure the people over there will be able to give you support as well. Clicking on the link I've created will take you back there.
When you have a minute it would be really useful if could pop something about your husband's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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