So - I had a partial glossectomy and neck dissection on March 25th, the margin wasn't what was expected so they recommended radiation treatment. 33 treatments in total, and I was forewarned that it would be uncomfortable, and towards the end very difficult.

But I am really 'down' now, I am finding it very uncomfortable - my mouth has lots of sores, my tongue is a mess and I feel like I have strep throat. I am only 1/3 of the way there and will be 'whining' to my oncologist tomorrow but I am just not sure how I will get through until July 4th. I was using the fluoride trays at night, but found it was burning my mouth so badly, the dentist has told me that I can discontinue.

I am rinsing my mouth out hourly and carry flat club soda around with me to hydrate my mouth. Am going to try acupuncture... I wish I could be one of the positive Penny type people but right now I feel really bummed out and am wondering why I even signed up for this. It is to reduce the chance of cancer recurrence, and I get the benefits but...

I know for many of you that have faced far more trying circumstances, I must seem like quite a whiner, but I was never blessed with an amazing pain tolerance and this is very frustrating for me!

Plus my energy level is just the pits - I am not working, but have no stamina or endurance to do things I enjoy doing or things that I should do.

Hi LWP,
Bums me out to know how how's and in pain you are. I did not have much pain from my radiation treatments. It was not pleasant, but definitely not like others, or what you seem to be experiencing. However I was in excruciating pain in 2011 from my first bout with this ugly cancer. I also do know a lot about being down. I was probably clinically depressed for weeks...self diagnosed. But staring into space in front of a window for weeks, and feeling numb was, I think, a good sign. Had horrible anxiety and finally took meds for that to sleep at night. You asked how you get through it all...I don't know...somehow we do...we just do. Expressing myself and reading here at the forum made an incredible difference for me. I actually read more than shared. It was my lifeline to sanity. Everyone here will stick by your side and talk you through it. Others will have many ideas on how to deal with the pain. Some people watched movies, others read, others walked. Me?...I withdrew and wore leggings with my sons flannel shirts everyday...hey that's what worked for me. And of course I'm sure you will be talking to your dr about pain medication.
Please keep on expressing yourself here and ask any questions that pop into your mind. No one will think you are a whiner. Please don't ever worry about that.
Best of luck to you. ~

It is totally normal to feel this way. There were many times I wanted to quit. I felt like I couldn't endure Amy more treatment. But day after day went by and then it was my last day. You can make it through. You can do it. I promise. If things get really bad they can stop your treatment for a few days. It's good to vent and here you have people that understand what you are going through.

Hi LWP
I had similar to you dissection with radiation I used a water pick with club soda daily it seemed to keep my mouth cleaner and not as many sores, I see your a Canuck as well I found that Timmy icecaps really soothed plus gave 540 calories to help with calorie intake I know high on sugar but calories are calories, hope you start feeling better my wife is a little horsey as well here on the island of van.
Best wishes ken

Ask for a prescription for magic mouthwash. It will help numb the mouth sores for a little while, long enough to make eating easier. The best thing you can do for yourself to to control your intake. Every single day take in a minimum of 2500+ calories and 48-64+ oz of water. You can ask your doc for a prescription to get hydrated a couple times per week in the chemo lab. This will help you avoid dehydration and feeling even worse.

I wish I could say it will get easier but unfortunately it will get progressively harder. The worst will be the first 2/3 weeks after you have finished rads.

Check out some other posts about acupuncture. Several members have had mixed results. It might be wise to wait until you have begun to recover before you try it.

You are not a whiner! You are among friends who have been there and understand what you are going thru. Its not easy! Try taking it day by day without thinking too far into the future. The "what if's" will make the whole thing even harder.

Ask your doc or dentist for a different flouride prescription. You should push to use the flouride trays every single day. Radiation is very hard on the teeth, you want to try to avoid bigger issues down the road.

Hang in there!!!

LWP,

Sorry that you are experiencing these side effects but do try and keep this in perspective. Your docs feel this is necessary to kill whatever cancer cells remain and prevent a recurrence. This cancer has proven to be difficult to eliminate so unfortunately the current treatment is intentionally designed to deliver maximum force.

Remember in the grand life picture this period is a mere speed bump so lets get mad and show this cancer whose boss.

Re the trays, I also stopped during Tx with the permission of my dentist and resumed as soon after Tx as I could tolerate it. I used them ever night for 5 years post Tx and now 8+ years post Tx I still don't have any dental issues.

Your are not alone as we will be with you 24/7.

Thanks all for the great advice. I think part of the problem is that I live in Canada, and we live for our short and awesome summers! I have a daughter who wants to show her horse, a family cottage that I love to go to, and I feel like c r a p with a promise of worse to come. I keep trying to remind myself of the long run, but when I talked with the radiation oncologist he said at the outset, that by the numbers, I had about a 40% chance of recurrence without the radiation and a 20% chance with the radiation. That's what keeps my mind going around - how much pain for the 20%.

Over the last few years my 'luck' has been on the downside, my mother got cancer and I kinda messed up my career taking time off with her, both at the time of her original diagnosis and then when it reoccurred (she has small cell lung cancer - very aggressive). She plowed through her treatments like an absolute trooper. I feel so wimpy in comparison. When I went back to work after her death, I ended up having a bit of breakdown, for lack of a better word, and was off for more than a month.... and I returned in a wobbly state of affairs - things just started settling out, and my husband ended up having a serious mental breakdown - was hospitalized for a couple of weeks, and really and truly not himself for months and months. I ended up having my two girls really struggling, one began cutting herself, and his family blamed me squarely for his illness.

Things got really bad - and then we started to see the light and just as we were starting to settle out again - BAM, here comes the cancer card. That stupid thing on my tongue had been there for months and months but with all the stress with my husband, it was the last thing on my mind.

I'm sorry - what a long rant... I really do try and catch myself all the time, I am lucky that I have had the treatment that I have, and that I have the support that I have, but .... I have a few ways of dealing with things when I am feeling very upset - eating, riding or talking (read: venting). And, none are working for me right now so I don't have any great backup coping strategies. Writing will have to do. And, when I write this down, I really struggle to find the perspective...

I guess a long way of saying that I feel like I have been hitting speed bump after speed bump for about 6 years now and my endurance is shot...

Not sure if you guys were read the story of the little train trying to go up the hill, "I think I can, I think I can, I know I can..." but that's what you have to become is that little train. Heck some people breeze thru this Tx and continue their life normally. For me and I believe the vast majority, I had to endure 7 weeks of crap (starting week 4 and ending week 3 post Tx). You will need support and you need to tell your family this is ALL ABOUT YOU and help you get through this Tx and it's recovery.

Re the 20% difference, it's worth it IMO.

LWP, where are you being treated in Ontario? Is it Princess Margaret Hospital? Is there counselling service where you are? If so, it may help for you to go talk to someone there.

Hey there. I know it's kind of like a pile on situation. Right? One thing after another. And now with things getting BAD it's compounding the pain of the past few years (BTW - I think I told you this before - my mom died of lung cancer as well) Don't compare yourself to your mom. Seriously - two different cancers and frankly two radically different treatments.

My dad, and best friends father died last march - my dad was in the hospital/rehab for 8 months and I visited him daily and fed him and helped him it was a LONG HAUL. Two years after my own battle it was a time I value with him but it was NOT easy - particularly watching him give up and fade - he'd had a very debilitating stroke. I barely recovered from that and my father in law gets esophageal cancer and guess who did at least half of the driving, drs appointments and treatments with him...?

Life sometimes deals a shitty hand and you feel like you are the one standing in that hole and shoveling all the time. Talk. Really that's what I want to say. Children need to hear the truth. Sometimes not knowing is scarier than hearing the truth. With my kids I wasn't all doom and gloom but I never made any promises either. I told them straight up to prepare them - asked for some help when I needed it (but I was also very self directed in my own care) but mostly I just kept them informed and not in a negative way... basically I just told them this is what it is. You can't change it but how you deal with it makes a world of difference.
My husband was big on denial - still is - but I did force him to hear a few things I had to say about my health so that he too would be on board with what was going on.
One of the hardest things I had to do is watch a good friend die of a different kind of cancer literally a year and a half after I was finished treatment (we were being treated at the same time)
Life offers no guarantees so do the best you can to make each day worth it even if you feel like a thousand pounds of horse poop. SOON you will feel better. Just one foot in front of the other my dear - and don't think of it as 20% think of it as upping your survival rate from %60 (which is far too close to %50 for my liking) - to %80 which sounds MUCH BETTER. HUGS