Hi, I wanted to hop on for some advice. I have been caring for my husband who was diagnosed with Head and neck cancer last June. Its been a horrific year. He had rare maxillo sinus cancer which had grown into a large tumour. As a result he lost his left eye, most of his palette and also had a neck dissection. He initially had reconstruction in the form of a flap from his shin bone which failed. As a result of this he is limited now with his speech and eating and has to wear an Obturator. He underwent invasive Radiotherapy and Chemotherapy for 7 weeks which resulted in a lot of problems. Hes also more or less deaf now too. As a consequence of the Radiotherapy, where his eye was, a large hole, cavity has opened up and in his cheek and you can see into hos skull and nasal cavities. He keeps this side of his face covered, he wont leave the house and has although he gets up every day and keeps going, I don't know how he does it I honestly don't.
Anyway we have a follow up apt with the Oncology Surgeon on Monday and after the last apt I left feeling exteeme anger due to the lack of clarity about what they are going to do to repair these horrorific holes in his face. We were told they may try reconstruction again when he was in hospital after the first surgery, now that's not likely to be an option and when my husband asked about grafting skin over these holes we were met with well it might look odd! Erm as odd as having half of your face destroyed or wearing a clip on prosthetic? I really dont feel that we have had nearly enough support for the severity of how traumatic and life changing this has been for him and for both of us. We had a full life, we are still relatively young too. I am worried that we may get fobbed off next week and don't know how to approach seeking additional information or to push for additional referrals. We have had a bit of practical support from the nurses, but minimal emotional support. They say they are going to do check in calls and it rarely happens. I just feels so frustrated on his behalf.
There is so much going on in the reconstruction world.
WDoes anyone please have any advice on what might be helpful and how to approach things if we are not happy with the outcome of the apt?
I am sorry for the long post. I have been procrastinating about coming on and writing this.
Many Thanks.
