Still recovering from two heavy operations for SCC last year. T4N2M0 AND T2N1M0.
They have just found a 4cm growth in my stage 4 area upper right jaw on a CT scan. CT scan in November was clear so this seems to be quite aggressive and fast growing.
Need to wait until 14th February for a biopsy which is really hard as I can feel the pain and swelling get worse almost daily. Wish I could go sooner. After which they will tell me what my treatment options are.
Had full rads and cisplatin in 2011 so they have ruled out any of those treatments unless palliative. Also no talk about immunotherapy or chemo for me unless palliative. Only surgery if possible.
Feels like this could be the beginning of the end. No idea about a prognosis. Doctors say nothing until they know. They just tell me I have a problem.
After last year, with the two operations, my wife dying unexpectedly of pneumonia in December at age 54 and my teenage son attempting suicide I am finding it hard to 'stay positive'. I will do whatever is necessary (think it's called 'fighting') to be around my kids as long as possible but my lord, I feel overwhelmed.
Trying to get things in order for my potential demise but feel paralysed. Frozen with fear and stress. Can't seem to sit still and begin. Don't know what to begin with actually. Writing a will? I already gave my family all my codes for phone, banks, computer etc. Giving my belongings away?
Could be that they can operate and declare me 'cancer free' for the third time, but something inside me just knows this is not in my cards. Also, each operation leaves me weaker and weaker. They are 10 hours long and I haven't had time to recover. One in March, then ,October and now this.
Now I'm rambling or ranting and don't know what I actually want to ask/say. Just feel very sad. I'm still grieving the loss of my love and now I suppose I'm grieving for my kids, for me I don't know. Too much to process for one tiny brain and a broken heart.
Thanks for listening.
Thank you. Yes, the dreaded waiting. It's horrible. Especially difficult to be around the kids pretending that daddy is fine until I get concrete information and a plan.
My ENT doctor is an angel and she will speak to the professor tomorrow to see if anything can be sped up. She asked what she would ask on my behalf. I simply said, as a physician, if you were in my position, what would you want to know?
It's such a nasty disease, don't have to tell anyone here, but it's really weird in that I just don't feel or look sick. Apart from the pain and swelling going on in my mouth.
Endure. That's the word. No choice.
Peace.
Hi Larry
Just to add to Chris's post. Like him I have had several surgeries in the last 10 years for jaw cancer. A partial mandibulectomy, 2 maxillectomies, 2 lots of radiotherapy and last year an upper jaw reconstruction. I just wanted to say that it is amazing how our bodies recover and we adapt to our circumstance given time. It seemed never ending at the time but you come out the other side with a greater appreciation of life albeit with some changes.
I do hope that your medical team can come up with a plan that gives you another chance to live your life again. It is then up to us to forge ahead and work with it. When the time is right counseling can help enormously.
In relation to your mention of a will. I think that it is wise no matter what stage we are at in life to have a current will in place. It can save a lot of complications down the track for our families. It doesn't necessarily have to be an expensive trip to a lawyer as there are do it yourself will kits you can buy online. Many people don't make out a will as they think it is going to jinx them but far from it. I have had a will since our kids were small and have updated it since and I am still here.
Sending you lots of positive thoughts at this hard time.
Lyn
Sophie66
Larrykins
I am so sorry this is happening to you ……. I can only imagine how difficult your life is at the moment ,
Life must feel impossible after what you (and your children)went through last year…. I hope you have people/ other family members who can support you and your children ? Can the hospital offer Counselling or any other support for you all…(if you feel this could be helpful).
I hope you get some positive news from your ENT soon, re plan .
There are worldwide clinical trials and immunotherapy options having positive results for people x
Sending you and your children a virtual hug
Debbie
Larrykins I am so sorry to hear what you're going through. No wonder you are struggling, and the waiting and not knowing is so hard.
It's well worth getting a will done as it saves your family a lot of bother down the line. I did one a while back. Some charities including Macmillan offer a free will writing service:
https://www.macmillan.org.uk/forms/gifts-in-wills/ppc-free-wills.html
It can take your mind off things to ponder who you will leave what to!
Wishing you luck & strength
Catriona
September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022. Now over 2 years all clear. See my profile for longer story
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