6 weeks post treatment - recovery and support group questions
Sorry I have not posted in some time but I have been reading the board sporadically since my treatment ended. Due to up days and specifically my dark days when I was not in a good place I have not posted and that is one of my regrets. I wanted to share with newcomers what a great resource the Discussion board is and how much you can learn from this Cancer family by reading and I know by posting I can share what I have learned with others. So if you are new to the board or someone who has been here for some time please continue to post and don't follow my example in that respect. I believe the board and support I have found played a major role in the success of how well I handled my treatment.
First, a little about me.. I finished treatment on December 3, 2011 for stage 3 Tonsil cancer specifically T2 N2b M0 squamous cell carcinoma of the right tonsil which spread to the lymph nodes in my neck. .
Now for my questions:
1) does anyone know of any 'in person' support groups in the greater Houston area? Maybe I have a ignorant social worker but I have been looking for a support group in the greater Houston area and finding it difficult to find one for Head and Neck cancer survivors. Given that MD Anderson is in Houston - my back yard I find this mind blowing? I found a great Breast cancer survivor group that welcomed me with open arms but I still am seeking a support group that I can better relate to given that my cancer was Tonsil cancer stage 3 / rt lymph nodes. I am even wondering if part of post treatment mission should be to help them start a HN Cancer support group? Not that I have a clue what to do to get one started but I see the need and wonder if I should take that on? I was told they are thinking of starting one in the Clear lake area which would be great. I love the online support groups but am looking for the in person connection.
2) Any advice on whether getting individual counseling from a professional to deal with issues such as fears about the future, cancer re-occurrence, family issues, going back to work, etc? and if you are in the Houston area do you have anyone you recommend or don't recommend for therapy?
3) Any advice and tips on post treatment nutrition, etc, as I am finding recovery difficult due to extensive mouth sores, sore throat and difficulty eating and getting my energy back? Specifically, what others found worked as far as getting your life back?
4) How to you get family / friends to understand that while you are done treatment you are not done with recovery and dealing with the side affects? Fatigue? Difficulty eating? etc?
5) Any advice on post treatment exercise: Fortunately, in my situation I had a few extra lbs to lose so while I lost a substantial amount of weight I did not have to get a PEG / feeding tube. I am finding the loss of my sense of taste difficult to deal with. The bonus is some of the junk food, sugary coffee drinks I was addicted to pre-cancer I no longer enjoy. So the weight loss is a positive in my opinion but how do I keep from losing too much lean muscle mass and tone up so I don't become emaciated.
6) Thoughts and feelings on accupuncture to deal with treatment side effects? I am seriously considering this as I have read that accupunture can be very beneficial.
7) for those that took work off during treatment any suggestions on returning to work full time or coming back at reduced hours?
In conclusion, keep me in your thoughts and prayers as I have my first post treatment CT Scan on January 26th and find out the results on January 27th?
I know lots of questions in one post so fee free to reply in whole or in part to my inquiry.
And I hope to stay more connected with the discussion board as I know there is so much I have not read that I can learn from.
Here's to everyone being cancer free in 2011 AND A reduction in the number of cancer diagnosis in the future if not an outright end to cancer cause cancer sucks.
~ Eileen Cibil AKA dragons 7-7-2010
PS excuse any spelling or grammar mistakes.
Comments
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I could have written your post.
I honestly could have wrote a large majority of what you posted. I'm glad that you are feeling a little better and that you posted.
1. I cannot find a HNC cancer support group near me either. Their aren't any around here. I found a general cancer support group and they were very nice but I needed people who had the same issues as I and who could help me deal with the fact that I could not eat. At the time I went to the meeting I still had my peg tube and couldn't really eat any thing but bananas and avocados. I went without any food by mouth for like 8 months. I was beyond depressed and I was hoping to just find an actual person who understood. When I got to the meeting the first thing I saw was snacks on the table of soda, pretzels, and cupcakes. Most were breast, prostate and brain cancer survivors. Lovely people but I couldn't stand the food on front of me and I really needed to talk to someone that understood what it was like not to eat. I was also thinking of starting a group for local HNC survivors since there are none anywhere near here. I would need a big more stamina first tho.
Try calling the American Cancer Society and they can tell you of there is one by you. Also SPOHNC may be able to find you one in your area. I tried to sign up for counseling with an online support group but I was jumping thru so many hoops to do it and I don't even think any one got back to me. I think it was cancer care or something. Thank God I was suicidal and needed help immediately.
2. Try looking for free counseling. Some cities have places that provide it free for people that ar not working. Social worker can't help with that one? What about one of the docs that you go to? They might be able to put you in contact with some one. Do you have a clergy person, religious leader or spiritual leader that you are in contact with? They may know someone.
3. Mouth sores and eating and nutrition. I still struggle in this area. I have a stricture so eating is hard. My tongue still hurts and some foods burn, others I choke on. I take a liquid multi vitamin, immune booster, l-Glutamine and I try to eat a lot of veggies and whole grains. Not any meat really cause I cannot swallow it. Most fruits still burn. My diet is still pretty high in dairy I need the calories and I can swallow it and milk soothes my mouth. I am holding at about 100-103 lbs. That is up from a low of 87lbs. I bought an emulsifier and I am able to purée fruits, vegetables, both cooked and raw whole foods. I have a HealthMaster. Vitamix also makes them. I have a chopper / mini processor that I use daily to mince my veggies to cook with. These two products have been invaluable. They have allowed me to swallow things I would not have been able to. Why make your already sore mouth work any harder than it has to? Love that chopper and healthMaster. I wish I could get back to using my juicer. I miss my fruit juice and my green smoothies. Hoping my mouth can tolerate it some day. Please feel free to email me if you want to try some good grain and veggie recipes. Don't know what you like and what you can swallow but I love to cook and have a ton of recipes and I have been thinking of writing a book or blog for those of us that have problems swallowing.
Exercise:
I started a very gentle yoga class once a week as well as a belly dance class once a week. I actually met with the yoga instructor before i joined the class. She gave me a one on one instruction and helped me modify any moves I could not do because of my left arm weakness and neck limited mobility because of my dissection.
I was 120-125 and worked 50 hrs a week in a job that was very physical and I was in good shape. I have so muscle and not stamina left. I'm exhausted all the time. But I have periods of a couple hours a day where I can do a few things. Take it slow in the begining and find something easy and light to do. A few of us ladies have started yoga on the board. I would recommend gentle yoga because it is not only body but mind and spiritual as well. My instructor uses breathing thru each of the moves and she is great with individual attention when we need it. Our class is never more than 8 or so people.
I lost track of what I was going to say because I'm on an iPhone and I only can see a tiny bit of what I'm posting. Lol. Going to post this and break a minute and re read your post.0 -
Continuedsweetblood22 said:I could have written your post.
I honestly could have wrote a large majority of what you posted. I'm glad that you are feeling a little better and that you posted.
1. I cannot find a HNC cancer support group near me either. Their aren't any around here. I found a general cancer support group and they were very nice but I needed people who had the same issues as I and who could help me deal with the fact that I could not eat. At the time I went to the meeting I still had my peg tube and couldn't really eat any thing but bananas and avocados. I went without any food by mouth for like 8 months. I was beyond depressed and I was hoping to just find an actual person who understood. When I got to the meeting the first thing I saw was snacks on the table of soda, pretzels, and cupcakes. Most were breast, prostate and brain cancer survivors. Lovely people but I couldn't stand the food on front of me and I really needed to talk to someone that understood what it was like not to eat. I was also thinking of starting a group for local HNC survivors since there are none anywhere near here. I would need a big more stamina first tho.
Try calling the American Cancer Society and they can tell you of there is one by you. Also SPOHNC may be able to find you one in your area. I tried to sign up for counseling with an online support group but I was jumping thru so many hoops to do it and I don't even think any one got back to me. I think it was cancer care or something. Thank God I was suicidal and needed help immediately.
2. Try looking for free counseling. Some cities have places that provide it free for people that ar not working. Social worker can't help with that one? What about one of the docs that you go to? They might be able to put you in contact with some one. Do you have a clergy person, religious leader or spiritual leader that you are in contact with? They may know someone.
3. Mouth sores and eating and nutrition. I still struggle in this area. I have a stricture so eating is hard. My tongue still hurts and some foods burn, others I choke on. I take a liquid multi vitamin, immune booster, l-Glutamine and I try to eat a lot of veggies and whole grains. Not any meat really cause I cannot swallow it. Most fruits still burn. My diet is still pretty high in dairy I need the calories and I can swallow it and milk soothes my mouth. I am holding at about 100-103 lbs. That is up from a low of 87lbs. I bought an emulsifier and I am able to purée fruits, vegetables, both cooked and raw whole foods. I have a HealthMaster. Vitamix also makes them. I have a chopper / mini processor that I use daily to mince my veggies to cook with. These two products have been invaluable. They have allowed me to swallow things I would not have been able to. Why make your already sore mouth work any harder than it has to? Love that chopper and healthMaster. I wish I could get back to using my juicer. I miss my fruit juice and my green smoothies. Hoping my mouth can tolerate it some day. Please feel free to email me if you want to try some good grain and veggie recipes. Don't know what you like and what you can swallow but I love to cook and have a ton of recipes and I have been thinking of writing a book or blog for those of us that have problems swallowing.
Exercise:
I started a very gentle yoga class once a week as well as a belly dance class once a week. I actually met with the yoga instructor before i joined the class. She gave me a one on one instruction and helped me modify any moves I could not do because of my left arm weakness and neck limited mobility because of my dissection.
I was 120-125 and worked 50 hrs a week in a job that was very physical and I was in good shape. I have so muscle and not stamina left. I'm exhausted all the time. But I have periods of a couple hours a day where I can do a few things. Take it slow in the begining and find something easy and light to do. A few of us ladies have started yoga on the board. I would recommend gentle yoga because it is not only body but mind and spiritual as well. My instructor uses breathing thru each of the moves and she is great with individual attention when we need it. Our class is never more than 8 or so people.
I lost track of what I was going to say because I'm on an iPhone and I only can see a tiny bit of what I'm posting. Lol. Going to post this and break a minute and re read your post.
4. Family and friends and difficulty eating. Hmmm. Good luck with this one. My family still doesn't really understand. I can't eat what my dad cooks or up there with my family. My dad can't really cook for four other people and also suit my tastes. Plus they eat in five minutes and it literally takes me an hour to eat my food. So I'm left there alone, fighting the dogs off of my food. There cresteds, one 200 lb mastiff and a 135 lb rottie and then my grandmother staring in my face while I'm trying to eat my food. And they don't understand the waste thing. I basically cook just for me and I eat by myself. I also get more down that way. I do have best friends that I can eat in front of and I do pretty well in front of. They ignore my choking, sit the whole hour with me and have tried to make food I can actually eat and swallow. People will never get it unless they have been where we have.
5. Guess I touched on exercise a bit. Protien powders help. L-Glutamine helps. Try to eat good whole foods if you can. I couldn't. For I while I lived on boost and milk shakes. You do what you can when you can. I have really been getting a bit better with being able to swallow more foods. Green Giant frozen veggies are a go to staple for me. As well as a three grain pilaf I always have on hand. Also eggs. I eat them every day.
6. Some people have had success with accupuncture on this site as far as salivary function goes. Throw in acupuncture in the search on this site. I know there have been posts on it.
7. Going back to work. If you are up to it then talk to your boss about coming back slowly. I have not worked since my neck dissection and treatment. My company told me if I wanted to go back I had to go right back to my hours that were required for my position. No exceptions. I had to do a minimum of 48 hrs per week, must work every Mon, Fri and Sat a minimum of 8 hrs per day, must work five days per week, six days if it's a holiday week and be able to climb ladders, unload truck, lift fifty pounds and run walls. Wasn't happening.
If you are on ss disability they do have a trial period where you can try and go back to work and not risk your disability. I am hoping that I may be able to work part time. I cannot support myself right now because I cannot work full time. I was very upset at first about it but it is what it is.
Good luck sweetie. I think you are doing great for six weeks out. Keep it up. Also come here and post and vent if you need to! We understand. I stopped posting at one point because I didnt want to be dawn the downer with all the newbies and scare them to death. You can always private message me anytime. We are here for you!
Blessings,
Dawn. Aka Sweet0 -
what I have been told
I am about the same point post treatment as you are, but I have asked these questions of my doctor(s). here is what I was told.
1. I don't know about in Houston, but in OKC, where I live a man who had H&N cancer couldn't find a support group, so he went to one of the breast cancer centers and asked if he could use their location once a month. we now have support meetings the first thursday of the month. I intend to go soon. you could always call a non-MD anderson radiation oncology group and see if they know of any support groups. my main hospital here didn't know of one, but my Rad. Onc did.
2. I was advised by several people to get counseling. three were my doctors (ENT, Rad Onc, and gen prac), then the fourth was one of my best friends who is a doctor. she said that H&N patients have a harder time getting back to a new normal than most patients and that it is very common for them to get severe depression.
3. I was advised to try to keep my protein levels at somewhere between 1/3 and 1/2 of my calories while I am healing. I was told to drink a glass of whole milk with each "meal" to help with my calorie levels. I was also told to try to keep as much of my food unprocessed and as close to a natural state as possible.
I love coffee, but the flavor is too strong for me right now, so when I get a coffee out, I get a Grande single shot latte at children's temp (120-130 degrees). It gives me plenty of flavor(thanks to my highly sensitive taste buds) with plenty of calcium and at a temp where I don't have to wait over half an hour or more for it too cool enough! I am trying to eat plenty of fruits and veggies, but they have to be soft, so they are mostly cooked or in a cooled soup form.
4.I am having a hard time with this one too. as soon as I was no longer on morphine the help I was getting just vanished. I have tried to explain to each of my family members that I was just exhausted last week...they would just say, ok, we love you and then move on, or when I would say, can you please stay a little longer so i can get a nap, they would say, "why didn't you nap earlier?" to which I replied, I would have napped if I didn't have to get my kids ready for school, get the dish washer running, wash laundry, take care of my youngest child, or dealt with a barking dog who kept waking the baby.
Then the week before I had tons of energy and my mom thought I had gone crazy. I went to another website and got a booklet for caregivers (post treatment) I hope it helps. (www.cancer.gov under NCI publications, go to friends and family, then look for the one titled Facing Forward: when someone you love has completed cancer treatment) they will mail it to you for free. I have ordered enough for my whole family. I hope it helps...I'll let you know! oh, and your family might benefit from therapy as well.
5. I was told to exercise in anyway that didn't leave me too tired. walking or running, but I was advised that I would need more water than I did before because of the thickened saliva and to pace myself. the exercise will help your body heal and keep you feeling better, but because of fatigue we have to be careful that we don't try to do too much too soon!
6.I used acupuncture after a shoulder injury...I loved it. just make sure you check with your doctor before you go...when I went for my shoulder they had me use a lot of herbal supplements...some of which your doctor might not want you to take.
7.I can't help you here. I was a stay at home mom...now that I don't have help from my mom, I am now back to my "job" full time.
a little about me: Mucoepidermoid Carcinoma of the Palate with growth into the Maxillary sinus cavity resulting in decalcification of my septum and part of my right upper jaw. Surgery in aug 2010. radiation finished right before thanksgiving 2010 (30 treatments) I wear an obturartor to fill in my defect so I can sound more normal. T2N0M0 Intermediate Grade Clear Cell Variety stage 4a clinically, stage 2 pathologically (tumor was about the size of a golfball). I have three children now aged 5, 3, and almost 1.0 -
You need to call your
You need to call your doctor. Extensive mouth sores this far out is probably Thrush. Medicine will help. Your diet at this point should be the highest caloric items you can find. At this point of your recovery food isn't going to any fun it is for survival. I still make milkshakes with protein drinks as a base. When you are able to get more food in you will feel more energetic. Exercise is a must. I ride a stationary bike every morning for 2 miles. I didn't start gaining weight until I started to do this. I don't have as many problems with fatigue either. The only thing that will "help get your life
back" is time. I used to measure how good I felt by comparing it to the day before. Sometimes it was worse, but most of the time it was better. I was told by my Medical Oncologist that it took at least three months for patients to start feeling like their new self. My family and friends sheltered me during treatment. The question was not why can't you do that but more let me do that for you. I did go back to work at the start of the school year, but my fellow employees wouldn't let me do anything physical for quite a while. (I supervise the schools computer labs) It seems the more active I keep my mind the less fatigued I get. I still need naps. I think we all worry about the c coming back.
You have to figure out a way to not have that fear control you. In my calm times I figure that God has a plan and he will take me when he is ready.
I'll be praying that you have good results from your first ct scan. The first scan was a turning point in my recovery. The results lifed a huge burden off my shoulders making recovery seem easier.0 -
Support Group in Cypress
Hello Eileen,
I attend a support group in Cypress Tx and the CY-FAIR Cancer center. It meets at 6pm tonight and every third Monday of the month. It is a general support group. They have various speakers etc. Tonight a Dr. will discuss Chemo for Breast Cancer, which is not of much interest to me, but it's good to meet with the group.
There are three of us that are HNC survivors that attend. It would be great if you could make it tonight or in the future. Here's the address: (near 290 and fm 1960)
CyFair Cancer Center
10650 Steepletop Drive
Houston, Texas 77065
I live in Cypress, and an MDA patient, received my treatments at the Katy Branch.
Email me if you would like to talk sometime. bkcuhc@sbcglobal.net
Best regards, and prayers headed your way for a clean PET!
Chuck
Diagnosed SCC unknown primary HPV+ T0 N2b
35 IMRT, 7 x once weekly Cisplatin
8 months post treatment and doing very well.
Completed treatments 4/30/2010
Three NED CT Scans so far!!!0 -
Hi EileenRushFan said:Support Group in Cypress
Hello Eileen,
I attend a support group in Cypress Tx and the CY-FAIR Cancer center. It meets at 6pm tonight and every third Monday of the month. It is a general support group. They have various speakers etc. Tonight a Dr. will discuss Chemo for Breast Cancer, which is not of much interest to me, but it's good to meet with the group.
There are three of us that are HNC survivors that attend. It would be great if you could make it tonight or in the future. Here's the address: (near 290 and fm 1960)
CyFair Cancer Center
10650 Steepletop Drive
Houston, Texas 77065
I live in Cypress, and an MDA patient, received my treatments at the Katy Branch.
Email me if you would like to talk sometime. bkcuhc@sbcglobal.net
Best regards, and prayers headed your way for a clean PET!
Chuck
Diagnosed SCC unknown primary HPV+ T0 N2b
35 IMRT, 7 x once weekly Cisplatin
8 months post treatment and doing very well.
Completed treatments 4/30/2010
Three NED CT Scans so far!!!
and welcome to the boards. You got some very detailed suggestions already. I can speak to a couple of your questions. My staging was as follows T1N2BMX so we were very similar. Emotionally this is no picnic and I availed myself of two separate psychologists for appx 3 months. Both were positive experiences but the second specialized in cancer patients and I thought it made a huge difference, she just recognized many of the issues instantly and we were subsequently able to deal with them much quicker. If you have access and means please do not hesitate.
Some very good books out there also: "The Cancer Survivors Guide" by Michael Feuerstein and patricia Findley has been very valuable to me as they run the guantlet from emotional to financial issues.
As 'Sweet' mentioned SPOHNC Support for people with oral and head cancer should be able to put you in touch with a group. 1-800-377-0928.
Texas Dallas- Baylor irving-Coppell Medical Center-Dan Stack 972-373-9599
Cvetko Ctr. at Sammons, Jack Mitchell 972-496-6561
Fort Worth Moncrief Cancer Resources, Valerie Oxford 817-927-6364
Houston - Tomball Regional Hospital, Lynda tustin, 281-401-5900
If not retuning to work for any period whatsoever is an option please avail yourself of it. The fight isn't over yet and you really will recuperate and benefit from giving it your best effort. Which leads into exercise and time to do it:
Anything will help, simple walking if you like. Yoga as mentioned is fantastic. Tai Chi is equally faboulous as they both involve meditation. Weight lifting for muscle mass is essential, just light aerobics with 1-3 lb weights when you are able. Please don't neglect nutrition and diet and any lifestyle changes , especially no more smoking or proximity to smoke. best of luck on the journey.0 -
Congratulations on finishing treatment!!JUDYV5 said:You need to call your
You need to call your doctor. Extensive mouth sores this far out is probably Thrush. Medicine will help. Your diet at this point should be the highest caloric items you can find. At this point of your recovery food isn't going to any fun it is for survival. I still make milkshakes with protein drinks as a base. When you are able to get more food in you will feel more energetic. Exercise is a must. I ride a stationary bike every morning for 2 miles. I didn't start gaining weight until I started to do this. I don't have as many problems with fatigue either. The only thing that will "help get your life
back" is time. I used to measure how good I felt by comparing it to the day before. Sometimes it was worse, but most of the time it was better. I was told by my Medical Oncologist that it took at least three months for patients to start feeling like their new self. My family and friends sheltered me during treatment. The question was not why can't you do that but more let me do that for you. I did go back to work at the start of the school year, but my fellow employees wouldn't let me do anything physical for quite a while. (I supervise the schools computer labs) It seems the more active I keep my mind the less fatigued I get. I still need naps. I think we all worry about the c coming back.
You have to figure out a way to not have that fear control you. In my calm times I figure that God has a plan and he will take me when he is ready.
I'll be praying that you have good results from your first ct scan. The first scan was a turning point in my recovery. The results lifed a huge burden off my shoulders making recovery seem easier.
Now the road of recovery, which is Phase III of the journey. (Diagnosis is I, Treatment II, and I would add Phase IV as re-engaging). Sounds like you are in III anticipating moving into IV. You have recieved a lot of excellent feedback above. I will comment on two things as I watched Mark in his recovery phase:
1. The mental attitude is just as important in this phase as in any other. The finish line of treatment may have been crossed, the perseverence to jouney on is a must (physically and mentally).
2. You asked about exercise. I suggest you include two things: something you like and something that is doable. You will be more likely to continue with it if you like it, and it does not overwhelm you. Having someone to exercise with is a BONUS! I don't know if you had surgery and need physical therapy, but it is a good place to start with some stretching.
BTW: Mark was stage IV tonsil, SCC, HPV+ with radical neck dissection, radiation and chemo. He is 6 months out and is snow tubing with his 8 year old daughter today.
Your questions are good ones...journey on!!
Kim0 -
Family of tonsil cancer patient questionKimba1505 said:Congratulations on finishing treatment!!
Now the road of recovery, which is Phase III of the journey. (Diagnosis is I, Treatment II, and I would add Phase IV as re-engaging). Sounds like you are in III anticipating moving into IV. You have recieved a lot of excellent feedback above. I will comment on two things as I watched Mark in his recovery phase:
1. The mental attitude is just as important in this phase as in any other. The finish line of treatment may have been crossed, the perseverence to jouney on is a must (physically and mentally).
2. You asked about exercise. I suggest you include two things: something you like and something that is doable. You will be more likely to continue with it if you like it, and it does not overwhelm you. Having someone to exercise with is a BONUS! I don't know if you had surgery and need physical therapy, but it is a good place to start with some stretching.
BTW: Mark was stage IV tonsil, SCC, HPV+ with radical neck dissection, radiation and chemo. He is 6 months out and is snow tubing with his 8 year old daughter today.
Your questions are good ones...journey on!!
Kim
I noted that you are a caregiver of someone who had tonsil cancer. If you are open to it I would appreciate some insights from someone who has gone through this. My husband was diagnosed with Stage 4 Squamous Cell late July, 2011 - he completed all treatment on November11,2011. He had undergone two chem only treatments and then went into once a week chemo while at the same time having radiation therapy 5 days a week for 7 weeks. He came through his treatment well, he did have a feeding tube for about 5 weeks. His pain has been primarily mouth sores and high mouth/throat sensitivities making eating extremely difficult. My question is at 6 months post treatment the food intake is still very difficult. He has gained back maybe 10 lbs in 6 months and nothing in the past 3 months or so. Do you have any tips, websites, etc that you could share?
Also, it seems that there is an emotional aspect of this that wasn't treated. I inquired to our doctors, whom I felt were excellent in most ways, they isn't take this seriously. I feel it is still hampering recovery.
If you have a moment I would appreciate your thoughts and guidance.0 -
Hi Kellyg12Kellyg12 said:Family of tonsil cancer patient question
I noted that you are a caregiver of someone who had tonsil cancer. If you are open to it I would appreciate some insights from someone who has gone through this. My husband was diagnosed with Stage 4 Squamous Cell late July, 2011 - he completed all treatment on November11,2011. He had undergone two chem only treatments and then went into once a week chemo while at the same time having radiation therapy 5 days a week for 7 weeks. He came through his treatment well, he did have a feeding tube for about 5 weeks. His pain has been primarily mouth sores and high mouth/throat sensitivities making eating extremely difficult. My question is at 6 months post treatment the food intake is still very difficult. He has gained back maybe 10 lbs in 6 months and nothing in the past 3 months or so. Do you have any tips, websites, etc that you could share?
Also, it seems that there is an emotional aspect of this that wasn't treated. I inquired to our doctors, whom I felt were excellent in most ways, they isn't take this seriously. I feel it is still hampering recovery.
If you have a moment I would appreciate your thoughts and guidance.
Hi Kelly....I can't help with your question but I noticed your post in the middle of an old thread ....you might want to post a new thread with the question as your header so it will be better seen. I have read so many posts on here that can give you some help.
This site is not the easiest to navigate ...
I will tell you this ..from what I have read 6 months out and having difficulty eating is NOT uncommon. I am 4 months out and still have my tube and though I can now eat, it is limited foods. I had stage III base of tongue with 1 lymph node involved HPV positive.
I lost 70lbs and that was with a tube before treatments began (that kind of paints a picture on how well I did with food intake).
I said a prayer for you and your husband as I finished this post ....(I hope that does not offend).
Best to you,
Tim / Idaho
timcogdill@yahoo.com
Please do go to the oralcancerfoundation.org ...it is one of the absoslute best sites for H&N support...lots of good info there!0 -
OCF Absolute Best H&N Support Sites....WTH..., LOL?Tim6003 said:Hi Kellyg12
Hi Kelly....I can't help with your question but I noticed your post in the middle of an old thread ....you might want to post a new thread with the question as your header so it will be better seen. I have read so many posts on here that can give you some help.
This site is not the easiest to navigate ...
I will tell you this ..from what I have read 6 months out and having difficulty eating is NOT uncommon. I am 4 months out and still have my tube and though I can now eat, it is limited foods. I had stage III base of tongue with 1 lymph node involved HPV positive.
I lost 70lbs and that was with a tube before treatments began (that kind of paints a picture on how well I did with food intake).
I said a prayer for you and your husband as I finished this post ....(I hope that does not offend).
Best to you,
Tim / Idaho
timcogdill@yahoo.com
Please do go to the oralcancerfoundation.org ...it is one of the absoslute best sites for H&N support...lots of good info there!
OCF best site for H&N Support....really...., LOL, I was kind of thinking that this site and forum was the absolute best.
OCF does have some great information, not so sure I agree with the support group comment, I'm rather partial to CSN.
Kelly, I was Dx as STGIII SCC Tonsil Cancer back in Janaury 2009. I went through a very similar treatment as your husband (minus the tube).
Everyone is different on recovery, so to say that he is not where he should be, or his body has dictated wouldn't be founded (at least to me).
Some like myself came through with minimal downtime, others had many more complications as for recovery.
Here is a link to the SuperThread;
SUPERTHREAD
It's a link to a thread of contributions and compilations from the many survivors of this "CSN H&N Forum", LOL....and put to a thread by Sweetblood22 (Dawn), also a CSN H&N Forum member, LOL.
It's a treasure of useful information, especially for newbies as yourself.
Tim, if you haven't checked it out, I highly endorse it...
Kelly, you are correct in your thinking concerning the mental aspect of diagnosis, treatment and recovery. For some it is a very real part of recovery...
Have you looked into any local support groups for survivors? I know my treatment center has several. Depending on where you are located I'm sure there is something in your area.
Best,
John0 -
H&N CSN the best ....I agreeSkiffin16 said:OCF Absolute Best H&N Support Sites....WTH..., LOL?
OCF best site for H&N Support....really...., LOL, I was kind of thinking that this site and forum was the absolute best.
OCF does have some great information, not so sure I agree with the support group comment, I'm rather partial to CSN.
Kelly, I was Dx as STGIII SCC Tonsil Cancer back in Janaury 2009. I went through a very similar treatment as your husband (minus the tube).
Everyone is different on recovery, so to say that he is not where he should be, or his body has dictated wouldn't be founded (at least to me).
Some like myself came through with minimal downtime, others had many more complications as for recovery.
Here is a link to the SuperThread;
SUPERTHREAD
It's a link to a thread of contributions and compilations from the many survivors of this "CSN H&N Forum", LOL....and put to a thread by Sweetblood22 (Dawn), also a CSN H&N Forum member, LOL.
It's a treasure of useful information, especially for newbies as yourself.
Tim, if you haven't checked it out, I highly endorse it...
Kelly, you are correct in your thinking concerning the mental aspect of diagnosis, treatment and recovery. For some it is a very real part of recovery...
Have you looked into any local support groups for survivors? I know my treatment center has several. Depending on where you are located I'm sure there is something in your area.
Best,
John
Hey John....no offense
I thought I implied OCF was "a" great source for informaiton ..but I did write 'absolute" ...my bad ....it's a great site with info for sure but...
..as for support .....I prefer this forum. I really do, I promise...
If it were not for this site and some of the posts here, I would have been pulling my hair out.
Tim / Idaho0 -
LOL...no worriesTim6003 said:H&N CSN the best ....I agree
Hey John....no offense
I thought I implied OCF was "a" great source for informaiton ..but I did write 'absolute" ...my bad ....it's a great site with info for sure but...
..as for support .....I prefer this forum. I really do, I promise...
If it were not for this site and some of the posts here, I would have been pulling my hair out.
Tim / Idaho
I was more just messing with you than being serious...although I do find this forum and survivors to be pretty great.
Initially when I was looking for a home forum, LOL... I also looked at OCF, Cancer Compass and a few others...after the first few months, I found my home here.
JG0
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