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.
cancer still there
Oh B****r!
is there any mention of immunotherapy as well?
I remember you had urgent marked on your notes and something about your liver, end of January?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Larrykins, so sorry to be reading this post and the heartache you have been through with your wife and son, thankfully i did not have to cope with this on top of my cancer. I can offer a more positive outcome with having had cancer 3 times in three consecutive years ( 2008, 2009, and 2010) 2010 being my last time. Like you, i cannot have radiotherapy because i used my allowance up after my first operation so i had to rely on my consultant and his team to try and stop it from coming back, i often thought will it ever end, and still look back and think to myself, did i go through all of that. I never gave up hope and neither did my consultant despite not being able to speak or eat, i now have a permanent feeding tube ( PEG) and just use pen or paper and a text-to-speak app to communicate plus hand signals. It took a long three years to get the positive result we all wanted and i now live a good life and have adapted to my new way of living and changes in my appearance due to reconstructive surgery. I hope you can somehow get some positive thoughts from my reply, i know that treatments and procedures have advanced since 2010 so hopefully, they can come up with a positive plan , wishing you all the very best for the future, we are always here for help and advice. Take care.
Chris
Its sometimes not easy but its worth it !
Larrykins Could you ask if your hospital is involved in the MOBILIZE trial?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
As far as I know it’s worldwide.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
