I got bad news yesterday!! I had an MRI and FNA both of which confirmed that my new lump was cancerous. I attended at a H & N Oncology clinic yesterday to meet with my surgeon and RO only to be told that there was in fact 3 new lumps/lesions in my jaw and neck and at this point surgery is not really an option. I have to go to the Peter MacCallum Hospital (Melbourne's CCC) next week to meet with my RO and MO to discuss my options.

I don't know what these options will be and my Surgeon keeps telling me to stay positive. My emotions are a little raw at the moment because I know the prognosis has to be poor - but I'm trying to stay positive for my family's sake. There are also practical things that I want to update and do (like my will, power of attorney etc.)but my husband keeps telling me not to talk like that.

I'd still like to go to the retreat but that won't be an option if I'm having treatments. If I'm lucky, and I have quick easily tolerated treatments I may still get to go (it starts on the 30th November) or even postpone it until the New Year.

I think I'm back at the 'why me' stage - I don't understand why I got this cancer when I never smoked and drank alcohol only very occasionally. I know that question will never be answered but I so desperately want to grow old with my husband and live to meet my grandchildren! And from the neck down I'm really healthy (mind you I have had a PET scan or chest x-ray for more than 12 months so that may not be case either).

When this all started I was T1N0M0 (tiny ulcer on left lateral tongue) and the ENT said barring being hit by the proverbial bus I was as sure a bet as was possible on living a long, healthy life.

Sue

Sue
I am so sorry to read the latest from you and don't know what to say. Hope you get some positive options out of your hospital visit next week. Will be looking for your post and hope that you can make it to the retreat if not next month then after treatment. You have been through so much these last few years you deserve some positive news.
Will be thinking about you until your next post.
Gabriele

Sue,

So sorry to hear your news. I will have you in my thoughts and will look for your upcoming posts. I hope you get some better news from your RO and MO.

Margaret

Sue

I am so sorry that you have had this news. I was treated at Peter MacCallum and live in Melbourne. Hopefully the doctors there will be able to give you some positive options next week.

If there is ANYTHING that I can do to help, please don't hesitate to ask.

Karen

Sue

This "news" sucks. It is so unfair. At times like these, who would not ask: "Why me?". At least I was Stage IV going into this mess, and told I only had 30% chance. I can't imagine how depressing it must be to start off with such a positive prognosis only to have it deteriorate so badly. I empathize more than you know with your desire to grow old (older in my case) with your spouse. That is the only thing that keeps me going. I know it is not much comfort, but at least you can still eat - at this point I would not worry much about diet etc as I think you deserve a little luxury and indulgence right about now - so get out those chocolates, and delicious fatty foods. Excellent and healthy nutrition has not worked out too well for either of us so a splurge can't hurt. I wish I had pigged out last year during my remission instead of eating tofu & vegetables & rice with zero sugar. Best wishes
charm

Dear Sue,

I am so sorry to hear this bad news. Hopefully the other Docs will come up with a good game plan to fight this recurrence. I know exactly what you mean about wanting to grow old with your husband. When my husband was first diagnosed and we found out he would have to have radiation I told the Docs that they had better guarantee me at least 30 more year's with him. We had only been married for 6 months. I think I scared them. You will be in my prayers. Hang in there and keep us updated.

Hugs,

Shelley

Oh Sue, I am so sorry. I hope your doctors come up with a good plan.

Thanks for the kind wishes from everyone. I have my appointment on Thursday at 10.00am......it's only three days away but feels like an eternity. I can't believe how quick this cancer can grow, as well as lumps on the left side of my jaw and neck, where I had radiation previously, I now have one on the right side. I'm not sure if this was one of the three lesions that showed up on the MRI, so I will ask on Thursday.

I am quite nervous about this appt. but will be glad to start moving on any treatment that they may propose. I hate the fact that every day that I have to wait makes the lumps that little bit bigger and more invasive. I'm trying to stay positive but it sure drags you down waiting...and waiting...

Good luck on Thursday. I'm be thinking of you and in the meantime - try to find SOME way to have a memorable moment each day. Whether its a 4 minute hug with someone special or a phone call to a long lost friend - do something each day until Thursday that means something to you. This cancer steals so much of our lives - try not to let it steal all of the next 3 too. Praying for you.

Donna

Great advice Donna!
Sometimes I lose sight of the things that give me pleasure and get bogged down in self pity - and fear about the future for my husband and kids. One thing that I have made a point of doing is catching up with friends that have been important to me, past and present. That is a great source of support and also changes my thought focus, at least for a while. I've got errands and shopping to do tomorrow, but plan to have a day in the country, including lunch at the beach, with my Mother and husband on Wednesday.

Sue