I just want answers

My dad has cancer and well his name is Stuart and I'm his daughter. I wanted a username to represent him rather than myself because he's the one going through this.

Anyway, he has stage 4 cancer and we were told immediately it was terminal. Appointment and things were delayed due to covid, which is how it got to stage 4 before anybody noticed. He has mouth cancer and well it is what it is now. The problem with removing it is that it was connected to the bone marrow and bone and it's close to his eye. 

He has also developed a ulcer on his tumour to and I don't know what this means and even contacting his nurse I never got a straight answer. All I know is that the immunotherapy didn't work which I know isn't uncommon, but now he's having chemotherapy every week (Tuesdays to be specific, like today.) The ulcer isn't going, infact it's getting worse and worse everyday and growing. So his body isn't fighting it off even though he is on plenty medication which is supposed to reduce it.

With the Chemotherapy now being weekly, the ulcer not improving and the immunotherapy not working I'm not sure what's happening. I need to add my dad cycles 3 miles to and from the hospital every week to prove he can. But he says it was specifically hard today, it could be the wind but he only really leaves the house once a day now, he cycles everywhere. But is becoming less active by the day, I don't know if it's closing to the end. 

  • Hello, and so sorry you are going through this.  When I realised that my Mum was actually dying from cancer, I spoke to one of her Doctors and demanded to be told the truth, and I was told that my Mum's cancer was in-operable and that she was in her final days.  It is devastating to be told that you are going to lose your parent, but at the same time, I needed to know the truth, so I know exactly how you feel.  Perhaps you should directly ask your Mum's Doctor.  Take care, Violet, x

  • Hello there and thanks for posting

    I am so sorry to hear about your dad and can only imagine what a difficult time this must be for you and for him.

    It is understandable to be feeling confused about what is happening at the moment and it is important to keep talking to the specialist team involved so you are kept in the loop.

    Ulcerations on tumours in the mouth are common and often do get worse before they get better with chemotherapy. It must be disappointing and a blow that the immunotherapy didn't work but hopefully the chemotherapy will do something but do remember it can take a little while to see the benefit.

    I am sure the doctors are monitoring your dad closely and if they think the chemotherapy isn't working they will say and either suggest a different treatment or have an honest conversation about what is happening.

    Cancer treatments often make people feel very tired and it isn't unusual for people to not be able to do all the usual things they do whilst on treatment. So try not to let your mind run away with itself in what may not be happening.

    If you can ask if you can go to an appointment with your dad so you can also hear first hand what the plan is and what they are hoping the chemotherapy will achieve. Do speak to the specialist nurse again and if she doesn't have the answers ask if it would be possible to arrange an appointment with the oncologist instead and see what they have to say.

    Make sure your dad tells the team how he is feeling and if he is having problems with anything to let his team know so they can assess him.

    Please get back if you need to or you are welcome to call the nurses Monday-Friday 9-5pm.

    All the best

    Naomi