My life in remission

It’s been a very long time since I have posted an update. This will be long and boring but hopefully this will give some newly diagnosed patients with a little hope. Try to avoid falling asleep:).
I was diagnosed in April 2021 with Metastatic Squamous Cell Carcinoma. Back of tongue R/S. It had progressed into my Lymph Nodes and there were abnormalities in my lungs.
Anyone that knows the dates, are aware that this was during Covid.
Two weeks after my diagnosis and one week prior to the commencement of my radiation and chemotherapy I ended up in emergency with a ruptured appendix which ended up being gangrenous necrosis. My appendix was removed in an emergency surgery situation.
Fortunately, it did not delay my cancer treatment.
I had 33 treatments of high dose radiation and 3 sessions of cisplatin. I spent the final week in the hospital as I was not able to swallow anything including water. This included the need for a feeding tube in which I had for 6 weeks post treatment. Now I want to state that the thought of having a feeding tube was one of my greatest fears. However, it made my life so much easier and in hindsight I wish I would have accepted the recommendation of a feeding tube much sooner. Don’t be afraid of such. It will make your journey easier.
Post treatment I was tested and in remission. Well aware that the worst side effects come within two to three weeks following treatment.
Unfortunately I continued to get worse. All contact with my treatment team repeated the same message. “Everyone is different with their recovery”
Embarrassingly, I ended up having somewhat of an emotional breakdown. Fortunately, I have the most supportive and loving wife in the world. After 47 years we are closer than ever now.
Moving forward 6 months, I ended up one morning spewing up blood. (A bit more to the story) however,
my wife called an ambulance.
I was taken to the cancer hospital and after several tests and CT scans it was determined that I had a radiation induced aneurysm of the lingual artery. This resulted in 5 hours emergency surgery in which I am pleased to say was successful.
Basically, this is an extremely rare condition. My psychologist at the cancer clinic had only worked with head and neck cancer patients for 30 years and I was the only one he had ever experienced to go through this. I was somewhat of a spectacle with the ENT’s and Oncologists at the hospital because most had heard of this rare condition but had never personally experienced it.
Post aneurysm, and after additional tests, during my meeting with my oncologist he stated that he had some good news and some bad news.
The good news “no indication of recurrence”
Bad news “I would be on opioids the remainder of my life for pain management and would be on a liquid diet the remainder of my life”.
It is now January 25th, 2025. I am pleased to say that I have not taken any opioids or anything else whatsoever for pain management for over two years. In addition, I am in no pain at all.
Also, I have not had a protein shake for over two years. And never want one again. I can eat almost anything. I need to chop my food into smaller chunks. I then mix with high fat plain yogurt which works as a great lubricant to assist in swallowing. I have yogurt and granola every day for lunch. Believe it or not!
I have had good success with my saliva output through acupuncture sessions.
My life is great. I am 65. Retired, and my wife and I are traveling again.
My message is don’t give up. During the most difficult part, or ever. I was really considering MAID. Sure grateful I stuck it out and fought to get my life back 🙂
If someone tells you that you can’t do something don’t believe them. How many people have been told they would never walk again only to prove the doctors wrong.
There is life after throat cancer. It’s an adjustment. However, it definitely provides a different perspective on life. There is so much I could share about this painful but amazing journey, however, I have probably lost most of you by now due to the length of this update. Don’t give up. Stay positive and make the best of the ride. You can overcome this and your life will be good. Changed, but good. I hate hearing “my new normal”. We all need to play the hand we’re given in life. Play it well!
Take care, stay positive and do the best to enjoy the ride. You are not alone.
If you feel I can offer any advice/support, either private message me or ask on this open forum.
All the best
Scott M.