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Bleeding Lingual Artery Aneurysm = Changes, like liquid diet and more
Another chapter for my adventure.
I had stage 3 squamous cell carcinoma of the right base of the tongue.
My final radiation treatment was July 9, 2021.
On January 13, 2022 I was watching tv with my wife when I coughed. This resulted in blood spewing from my mouth. I went to the washroom and simply holding my head over the sink resulted in a copious amount of blood and tissue pouring out from my throat. My wife was a little upset to say the least. The bleeding continued until shortly after paramedics arrived.
I was admitted to the hospital while they ran a series of tests. CT, X-ray etc. and released the following day after they could not find the cause.
2 days later I started to bleed again. After convincing my wife to hold off on calling paramedics I was able to get the bleeding under control within about 30 minutes.
After another 20 minutes and drinking a glass of water the bleeding started again. Another ambulance ride to emergency. They conducted more tests including more CT scans. This time they noticed a bleed at the Lingula Artery. They rushed me to the cancer hospital and subsequently I had emergency surgery to repair the aneurysm. 4 hours. Luckily they were able to go through my wrist.
Apparently, this is quite rare. They were then concerned with a possible recurrence or radiation narcosis.
The good news is there is no sign of recurrence and radiation narcosis has been ruled out at this time.
The not great news (but could always be worse) is that I have been told that due to the radiation damage in my throat I will most likely be on a liquid diet for the remainder of my life. In addition, also due to the nerve damage I can expect to be on a pain management program for the rest of my life. I really don’t want to be on opioids but I need to also be aware of my quality of life. As my oncologist put it “don’t try to be a hero”.
At age 62 I am now working towards my new life. My new normal. I am the luckiest man alive. I have the most loving and supportive wife on the face of this earth. She is my strength. We all have a cross to bear in this life. If mine is no solid food and taking medication to help with pain then I am doing pretty good. I am going to make sure that however many years I have left are going to be the best ever.
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Oh wow, @srm, that must've been frightening to cough up so much blood. I'm glad that recurrence was ruled out. I'd admire your attitude of acceptance of the "gifts" radiation and cancer continue to give you.
While other head and neck cancer survivors may not have experienced a bleeding aneurysms of the lingual artery (rare), they certainly are not strangers to adjusting to the life adjustments to the curve balls of living life after treatment. I think @fwpoole @alpaca @jeffk @sepdvm @loli @hrhwilliam @jessskoldal will understand.
SRM, will you be able to have a liquid diet by mouth or will you have to supplement with a feeding tube? Can you drink any consistency, i.e., pureed foods? What pain management is working for you at the moment?
You really bring tears to my eyes! And it is not out of pain; but out of admiration and joy . With that attitude, you will conquer even death. What a great example you are!. Thank you for sharing with us.
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2 ReactionsHi @colleenyoung
My liquid diet is by mouth. No feeding tube needed at this time.
I’m able to drink most consistencies and pureed foods.
I totally accept that this appears to be what I will live with but I have seen cases whereas someone is told they will never walk again but prove the doctors wrong. I will let you know when I eat my first BBQ’d steak :).
I’m on liquid Hydromorphone and Tylenol. Also, because my pain is mostly nerve related I am on Lyrica. I don’t like being on opioids again but my doctor said I need to consider quality of life. He suggested that I try to not be a hero.
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1 ReactionHeros are defined in many ways. Combating pain without help may not be a hero. But it sounds like your wife is your hero and you hers.
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1 ReactionWhat a series of terrifying experiences. So glad they found and were able to correct the hemorrhage. Surviving cancer certainly gives us a new vision of life, and you certainly have one of the best attitudes I have heard. May your swallowing continue to improve and may you have many many years together.
Something I’ve figured out is that no one prepares you for life after cancer. After surgery and after treatment. We all have to find our new normal, but I think so few of us are prepared for how hard that is or how different the new normal may be. I’ve thankfully not suffered with any complications as serious as yours, but I’m still struggling to find my new normal. My radiation treatments ended in early November, but I struggle with the side effects still to this day. Facial swelling, blisters in my mouth, internal swelling in my throat, and fatigue are all still very real parts of my daily life. I look back at the beginning of my journey and realize how naive I was to think that once radiation was done I would be on the road to returning to my old life and my old self. I haven’t found my new normal yet or discovered the new version of myself that I’ll be after this, but I hope one day I’ll be able to see things in such a positive way. You have such a positive outlook and I love that you’re able to maintain that with the help of your wife despite everything you’ve gone through and continue to go through. You are indeed a lucky man.
@jessskoldal, "no one prepares you for life after cancer" I think that would make a great topic for a new discussion to help others prepare for the end of treatment phase. Would you like to start the discussion here?
- Cancer: Managing Symptoms https://connect.mayoclinic.org/group/cancer-managing-symptoms/
I posted my story to hopefully prompt others to respond and share their stories or help prepare others for what their doctors may not be discussing with them.
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