Hi June,
I'm really sorry about your diagnosis. It is a shock. It is terrible news and it throws your world out of balance completely. The worst part is our fear for our families and how this effects our parter and children.
However, you have to find balance and hope. I looked for survival stories and good research on the tumour. This helped. Staying strong and being as physically fit as you can be to prepare for surgery is important. Try an olive leaf tablet every day as this will boost your immune system which is compromised right now. Lots of juices and smoothies. Marinate ginger cut up and soaked with boiling water. Use the cooled liquid the next day and sip it often. It will restore your emotional balance and also has other wondrous effects. (Look it up). Look for happiness right now. Find things that make you happy. When I looked for happiness during the pre surgery days, the only thing that could make me happier was another dog. As I already had two dogs, there was nothing I needed to make me happier. I had it all as you probably do as well. Enjoy what you have and be happy about it.
ACC is not a death sentence. Yes, it is terrifying. The scary fact about the tumour is that it will come back. There is no if. It may not come back for 15 years. Hopefully the surgery this time will give you clear margins at biopsy. That would be a great outcome for you and it is possible. My surgeon told me he thinks he got me a "cure" as the margins were clear. I'm not sure I believe that but some days I tell myself that. Maybe he's right. I was T2M0N0 so that is a great outcome.
I'm about 5 weeks post radiotherapy. My mouth is dry, dry, dry, no taste buds, no appetite and the mouth feels stiff and very uncomfortable. I am hoping that this improves as it is easy to go without eating at all and that's not good but i'm finding it harder and harder to force myself to eat. I have to drink constantly or suck on a lolly to keep my mouth manageable. Mouth washes that are for dry mouths are good too. It's not painful so there's nothing I can take to make it feel better.
If you are going to Epworth hospital I'm sure you have excellent professionals looking after you. I could recommend my surgeon and the Alfred Hospital but there in Dandenong and Prahran. Ask the questions at the Epworth. Do they think you would be better off at the Peter MacCallum? It's hard to know but whoever you have - you need to feel confident in their skills, experience and ability. That will help greatly when it is time to give yourself over to them for the surgery. I was scared silly about the surgery until I kept telling myself that these people - this team - surgeons, plastic surgeons, anaesthetists - were absolutely the best team I could ask for and that I could trust them to give me the best outcome which they did.
Good luck. It's a glib saying. I wish you strength, courage and positivity to get through what lays ahead. Lt me know if you would like to stay in contact and I'll email you my mobile number.
