Posted By: saxicola Belated introduction - 08-17-2012 01:41 PM
Hello to everyone, and thank you all for such a wonderfully supportive forum. I am now 7 months post treatment for LBOT SCC HPV16+, and doing well. I found this site as I was beginning to get past the worst of the treatment effects and found answers to all my questions. I usually spend so much time reading posts here that I end up too tired to get my thoughts together to do this introduction, but I thought it was time to put that right and join the community.

My worst problem during treatment was mucositis giving me very painful mouth ulcers made worse by thrush, so I was unable to eat for several weeks, (very relieved to have a gastric tube). My return to normal eating seems to be a slow process. I still have a dry mouth and swallowing is difficult so I�m still mainly on juiced fruit/veg, soups and smoothies and a couple of Fortisp (similar to Ensure) bottles a day. I do make myself eat small portions of more solid food each day washed down with lots of water. In the last month tastes have improved a lot so some foods are becoming more enjoyable, but I would say that eating is still more of a chore than a pleasure. I lost about 30 lbs from when my eating problems started when my back teeth were removed. This has brought me down to a nice size that I am very happy with, top edge of normal BMI. I have managed to stabilise at that only through carefully calculating my intake using the MyFitnessPal app on my phone. Without that I would never remember to eat enough. I am now trying to increase my exercise levels which does make upping my food intake more challenging.

I have a wonderful partner who was able to take time off to be at home with me while I was going through treatment. We were both able to keep a fairly positive attitude to dealing with it, mainly by not dwelling on the negative thoughts and taking each day at a time. I have learnt an awful lot about how much family, friends and workmate care about me and about appreciating my life. A book that has really helped me is �Anticancer: a new way of life� by David Servan-Schreiber. I learnt so much from it so would recommend it to anyone new to facing the horror of cancer. In fact I have a few friends who have now read it who are not facing it themselves but are interested in a healthier lifestyle.

I am back at work part time and my energy levels are pretty good. So all in all I am feeling pretty lucky with my life. Though when I�m tired in the evening I do still get upset when food insists on sticking in my throat needing several mouthfuls of water to wash down! But I�m hoping there is still time for more improvement on the eating front. I am also beginning to eye up what others are eating with jealousy, which I take as a good sign that my interest in food is returning!

I have been very encouraged by the amazing stories of others here, so I hope I can help to provide some encouragement to other who find there way to this forum.

Sally
Posted By: ChristineB Re: Belated introduction - 08-17-2012 02:41 PM
Welcome to OCF, Sally! I see you joined months ago. Glad you have taken the time to introduce yourself. Its always great to have another positive survivor among our members. Dont worry, you will see many more improvements over the next year and a half. Your eating will improve and you will return to almost the same as you were before. Almost! In some opinions after cancer, they are better as they have a new appreciation for life.

Posted By: davidcpa Re: Belated introduction - 08-17-2012 04:52 PM
Welcome and please stick around to help others in need of your new found experience and wisdom.
Posted By: Kerri Re: Belated introduction - 08-17-2012 11:43 PM
Welcome, Sally. Thanks for sharing about your treatment and recovery. I am facing a new primary tumor in my left tonsil (this will be round 2 with the beast). I will going with chemo and rads this time. I'm always glad to hear of people's recovery and to know that so many have "been there, done that" and it makes me believe that I can to...for a moment, at least.

Good to see you here.

Best wishes,
Kerri
Posted By: Deejer47 Re: Belated introduction - 08-18-2012 12:56 AM
sally, welcome and glad to see you posting. Well done on getting back to eating some. It took me a lot longer. Hope you continue to improve daily and keep that positive attitude.
Posted By: samkl Re: Belated introduction - 08-18-2012 12:27 PM
Hi Sally, nice to meet you. When my brother was first diagnosed, several people mentioned the Servan-Schreiber book to me, so I bought it for him. I just wanted him to feel less powerless in the face of the Big C, but a few of us also read it and I agree with you - there are many ways Servan-Schreiber suggests we can all "tweak" our lives. I would highly recommend it also.

Your treatment plan was very similar to my brother's. He is 9 months post treatment and in the last few months he has started to get some taste back, although lack of saliva while asleep still bothers him a lot. You are still relatively early post treatment. Wiser ones here will tell you that for every week of radiation you will need a month of recovery - I'm sure there's room for improvement for you. I wish you the very best. Linda
Posted By: Cheryld Re: Belated introduction - 08-18-2012 12:54 PM
Hi there and welcome! Everyone heals at their own pace smile you'll get there with the food etc. take care
Posted By: Cindy721 Re: Belated introduction - 08-18-2012 06:42 PM
Hi Sally:

My best friend is applesauce. It helps me get food down better than water.
My speech therapist also recommended Italian Ice since that will also help if there is swelling, but the applesauce really does the trick for me.
I buy the 6 packs of the no extra sugar added and always keep one in my purse, just in case.
Posted By: saxicola Re: Belated introduction - 08-19-2012 11:28 PM
Thank you all for your lovely welcomes. I already feel part of this warm family. I have been helped so much but by everyone elses experiences and advice so I hope I can contribute too.

Kerri, keep strong. You are being certainly being tested, having to go through this again. As others will have said, the treatment is harsh to be effective, so focus on ticking off the days and getting the treatment behind you. Take heart in the many good news stories on OFC for this treatment.
Posted By: David2 Re: Belated introduction - 08-20-2012 01:53 AM
Sally, greetings and welcome. I'm so glad to hear that you're doing so well, that you've gotten through the worst and that you have someone helping you out. I'm sure that was a huge part of keeping you in a good frame of mind and staying strong. As one of my other fellow Davids said (there are scads of us here), good for you for getting back to eating real food so quickly. Even though it might not seem so to you. Took me a solid 6 months, er, well, no pun intended. Not too much anyway.

Dr. Servan-Schreiber's book is excellent, and I was saddened to read of his death I believe it was late last year. Another truly great book is "The Emperor of All Maladies" by Dr. Siddhartha Mukherjee, which won our Pulitzer prize and deservedly so.

Like you I feel very lucky. Keep us posted on your progress!
Posted By: bethers0808 Re: Belated introduction - 08-24-2012 09:40 PM
Welcome. If you want to try some meats, maybe do ground ones with gravy, that is what I did, smile or If not ground, small pieces with gravy, but gravy has always been my friend, so it just gave me an extra excuse to eat more of it, smile. You can also do like mashed potatoes, but thin them out a bit, same with oatmeal. or if you do soups, if you want a bit more consistency to them, you can use instant potato flakes to thicken them up a bit. Best of luck to you, You are in my thoughts, keep up the great work!
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