"Follow up and reconstruction"

A couple of years ago, I was diagnosed with Scc tumour in my jaw bone. I had my upper jaw bone removed at Fiona Stanley hospital and could not fault the treatment I received. I then had 8 weeks radiotherapy at another service, again with the best care.

But now the follow up and reconstruction has been less than ideal. My face was perfect after the operation but I had no teeth on one side and it was obvious when I smiled. I asked for a few teeth for cosmetic reasons and was told I needed teeth for practical reasons and a reconstruction would be needed.

The following year, I recall a doctor decided to remove the fat graft in my cheek and seemingly destroyed the symmetry of my face. My face immediately started sinking. I developed double vision and my face and eye started drooping. My cheek sunk in and my face wrinkled. I found the mistake was obvious and I believe I was lied to by another doctor who tried to lay the blame on the radiotherapy treatment. I have since had Maxillofacial specialists confirm it was the removal of the fat that caused the sinking of my face.

My face continues to decline every day. The longer it’s left the worse it looks. I look so much older than my age. I’ve always taken great pride in my appearance and good care of my skin. I’ve had to get special glasses that cost me $2000 because of double vision caused by my eye drooping and now I need more but can’t afford it and as it’s still not stable or fixed there’s no point because it could get worse again!

I have been seeing the other Maxillofacial team since, with the view to having some sort of reconstruction but as of yet nothing has happened, besides the removal of the failed implant.

Recently, I saw the plastic surgeon at Fiona Stanley hospital who was going to perform some fat grafts of my face, I was given a priority 2 surgery waiting period of 90 days and sent home. That was many months ago. As of yet, I’ve heard nothing.

I’ve just had a new dental plate made so I’m gathering that means nothing is going to happen for quite a while, even though I’ve been assured that I am a priority.

I have been depressed to the point of being suicidal, I feel alone and abandoned. I feel frustrated and useless. I feel punished. I feel mistreated.

I’ve been coming to the hospital sometimes twice a week for the last few years, I live hundreds of km away. I drive myself back and forwards. I use PATS which is so painful trying to remember to get forms signed every single appointment and then getting gp referrals because of all the different specialty’s running out at different times. When I believe they have the ability to check my appointments on the computer anyway! The cost to me financially has been immense. The cost to me mentally has broken me.

I feel I have been forgotten in waiting rooms more times than I can count. Sitting there, the last person in the room 3 hours after my appointment time waiting patiently for my turn. Only to see yet another new registrar that I feel knows nothing about me or my cancer.

On the day of writing this, I was lucky, on this day my wait was only an hour and a half, and after that I didn’t get to see the oncologist, just a registrar that I felt didn’t know me at all, that went and asked my oncologist what to do. Actually I haven’t had a face to face with my oncologist for probably 2 years. I’m not important. The very fact that I have 2 lumps that have me petrified isn’t enough to get good treatment. In my opinion, poor people don’t get good treatment, I feel they die waiting.

I don’t know what to do anymore! I feel nobody cares. I feel I’m just another number that means nothing to anyone.

I loved it when everyone was wearing a mask because I could cover my freak face without people thinking anything of it. My kids didn’t have to be embarrassed by their parent's face. The fight in me has just about been beaten 😥😥