It seems there are a lot of us on the board struggling with this issue, so here's my 2 cents. For those that don't know, I was diagnosed in March of 2022 with stage IV squamous cell carcinoma in my sinus cavity. At that point, it had spread to the lymph nodes in the left side of my neck also. I lost about 1/2 of the roof on my mouth, several teeth, and 60 lymph nodes in my neck. The consequences of surgery and radiation shortened the muscles in my cheek where I couldn't open my mouth enough to fit a slice of toast in it.
Three months later, they found more cancer in the left side of my neck. Removed 30 more lymph nodes (damaging my spinal accessory nerve), then 30 more rounds of radiation and chemo. But... here I am,... now 15 months cancer free.
What I know helped:
Lots of prayer. This is the most that people can do for you. NEVER EVER DISCOUNT THE POWER OF PRAYER.
Try everything. I followed most of the suggestions from a book "Natural Oncology" by Neil McKinney. He has a very balanced approach. He says, "If your surgeon says surgery will get rid of the cancer - have surgery." But make your body as inhospitable to cancer as you can. I did fish oil, turmeric, ashwaghanda, melatonin, zinc.... I can't remember all of them. I did doses of fenbendazole (although not consistantly).
Get in the Word, pray, follow your spiritual practice. I remember thinking before my second surgery, "Well, next week, I'll be in a world of hurt, or I'll be in Heaven. I'm thinking Heaven sounds better." It was neither - my second surgery was tons better than my first.
Don't refuse help. This will be humbling for you. If you think it's not - being bathed by your neighbor who's also a nurse you work with - things like that will change your mind. I had people that I would never expect to help me give me rides to radiation (60 miles one way).
Find out any perks your insurance has. Mine allowed for travel reimbursement if I had to travel more than 40 miles from home. I ended up getting about $2K back from them. Get a concierge if your insurance offers one - mine was fabulous.
Follow a good diet, but use common sense. I lost 80 pounds from march of 2022 to march of 2023. I was at the point if I lost 2 more pounds, the doc wanted to put in a feeding tube - and there were people that encouraged me to do that. So when most supplements are some form of sugar and soy or whey protein - well, that's not great for you either. I did not get a tube, but my diet had way too much sugar and fat for quite a while. At that point, calories were more important than nutrition for me. It may not be the same for you.
Research as much as you can. When I was struggling with weight loss, people encouraged me to use THC to increase my appetite. THC can actually feed some cancers and mine was potentially one. So I did not use THC, I used elecampane and alfalfa tea to help, along with acupuncture. I used acupuncture, reflexology, botox, physical therapy, herbs, chiro, massage - all of them helped minutely but not consistantly with the non-opening mouth issue. I am better now - I can easily eat toast, but I still can only fit one finger in my mouth (sideways - most people can fit 2-3). But when I was at the worst point, I could only fit in one finger flat with a lot of stretching before hand.
One of the best supports was a Facebook group for head and neck cancers. It was a double edged sword - some of the photos were pretty horrifying, but it made me aware of how blessed I am. It helped me be prepared for mask fitting and radiation. For head and neck cancer radiation, your head is literally bolted to the radiation table. Knowing ahead of time made me not as anxious. I got so many great suggestions on there, like:
- biotene for dry mouth
- best tasting protein drinks (Core power or premier protein by a long shot)
- suggestions for any side effect or cancer symptom (pain, nausea/vomiting/diarrhea/constipation, skin breakdown)
- Enterade for nausea instead of Gatorade (which tore my mouth up)
- Healios supplement for mouth sores (literally cleared them up in 36 hours when I couldn't eat or drink much of anything)
If I can be of any help, even if it is just to listen, please shoot me a PM. One of the fabulous people on here (and I'm so sorry, but chemo brain is a real thing) sent me a lovely package with all sorts of goodies. People that swore they would do whatever for me flaked out when I needed help, but people I never expected to come to my rescue did.
This is an amazing group of people, and some of us struggle. If I can help any of you, please let me know. I pray for you all every night.
Three months later, they found more cancer in the left side of my neck. Removed 30 more lymph nodes (damaging my spinal accessory nerve), then 30 more rounds of radiation and chemo. But... here I am,... now 15 months cancer free.
What I know helped:
Lots of prayer. This is the most that people can do for you. NEVER EVER DISCOUNT THE POWER OF PRAYER.
Try everything. I followed most of the suggestions from a book "Natural Oncology" by Neil McKinney. He has a very balanced approach. He says, "If your surgeon says surgery will get rid of the cancer - have surgery." But make your body as inhospitable to cancer as you can. I did fish oil, turmeric, ashwaghanda, melatonin, zinc.... I can't remember all of them. I did doses of fenbendazole (although not consistantly).
Get in the Word, pray, follow your spiritual practice. I remember thinking before my second surgery, "Well, next week, I'll be in a world of hurt, or I'll be in Heaven. I'm thinking Heaven sounds better." It was neither - my second surgery was tons better than my first.
Don't refuse help. This will be humbling for you. If you think it's not - being bathed by your neighbor who's also a nurse you work with - things like that will change your mind. I had people that I would never expect to help me give me rides to radiation (60 miles one way).
Find out any perks your insurance has. Mine allowed for travel reimbursement if I had to travel more than 40 miles from home. I ended up getting about $2K back from them. Get a concierge if your insurance offers one - mine was fabulous.
Follow a good diet, but use common sense. I lost 80 pounds from march of 2022 to march of 2023. I was at the point if I lost 2 more pounds, the doc wanted to put in a feeding tube - and there were people that encouraged me to do that. So when most supplements are some form of sugar and soy or whey protein - well, that's not great for you either. I did not get a tube, but my diet had way too much sugar and fat for quite a while. At that point, calories were more important than nutrition for me. It may not be the same for you.
Research as much as you can. When I was struggling with weight loss, people encouraged me to use THC to increase my appetite. THC can actually feed some cancers and mine was potentially one. So I did not use THC, I used elecampane and alfalfa tea to help, along with acupuncture. I used acupuncture, reflexology, botox, physical therapy, herbs, chiro, massage - all of them helped minutely but not consistantly with the non-opening mouth issue. I am better now - I can easily eat toast, but I still can only fit one finger in my mouth (sideways - most people can fit 2-3). But when I was at the worst point, I could only fit in one finger flat with a lot of stretching before hand.
One of the best supports was a Facebook group for head and neck cancers. It was a double edged sword - some of the photos were pretty horrifying, but it made me aware of how blessed I am. It helped me be prepared for mask fitting and radiation. For head and neck cancer radiation, your head is literally bolted to the radiation table. Knowing ahead of time made me not as anxious. I got so many great suggestions on there, like:
- biotene for dry mouth
- best tasting protein drinks (Core power or premier protein by a long shot)
- suggestions for any side effect or cancer symptom (pain, nausea/vomiting/diarrhea/constipation, skin breakdown)
- Enterade for nausea instead of Gatorade (which tore my mouth up)
- Healios supplement for mouth sores (literally cleared them up in 36 hours when I couldn't eat or drink much of anything)
If I can be of any help, even if it is just to listen, please shoot me a PM. One of the fabulous people on here (and I'm so sorry, but chemo brain is a real thing) sent me a lovely package with all sorts of goodies. People that swore they would do whatever for me flaked out when I needed help, but people I never expected to come to my rescue did.
This is an amazing group of people, and some of us struggle. If I can help any of you, please let me know. I pray for you all every night.
