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You know how you're pouring your heart out to an anonymous message board and alluva' sudden what you've written goes off into cyberspace? I hope I have the stamina tonight to repeat my earlier message. Sigh. I'll put this in Word, cut 'n paste and hope it works this time.
I'm a 60+ female, retired (computer science, software documentation specialist), divorced, one married daughter who lives less than a mile from me, living alone and like it that way.
Sometime in October I had an appt to see my Primary doc because of a sore throat. He took a peek, said it was something viral, and sent me on my way, saying that antibiotics were inappropriate for viruses. I started living on store-brand eucalyptus menthol cough drops. The following week I went back because the sore throat continued to my ear and received the same diagnosis (or lack thereof). To me, this was rather minor; annoying, but not painful. This minor annoyance repeated itself off and on and I thought perhaps there might have been a change and made an appt two weeks ago. This time I saw the Nurse Practitioner who found a 'minor mass' (an oxymoron if I've ever heard one!), something not seen by my primary physician, and set me up with an ENT doc. Oh - the reason why the doc didn't see the mass? He didn't use a tongue depressor, only the little flashlight with me saying "Ahhhhh."
Last week I saw the ENT doc who recognized immediately that I had a problem. He did a biopsy and the probe through the nose thing (tons of spray-on deadening agents). I have a really nasty gag reflex but he was able to handle it. It wasn't bad or painful at all. He scheduled a CAT scan and an appt with a rad onc. His thought was that I had an early stage cancer of the tonsil.
I just got over breast cancer! These cancers aren't related! I did the whole biopsy, scans, lumpectomy, chemo, radiation thing, and it all sucked. Totally doable of course (I'm still here) but I didn't expect an unrelated cancer - I thought the worse that could happen would be metastasized breast cancer. So far all my post breast cancer checks have been NED (no evidence of disease). WTH?
For breast cancer I had a lumpectomy first, chemo next and rads last. This time I'll have rads only. I was naive enough to think it would be a breeze as rads were for me before (this is totally an individual thing. Although I'm very light-skinned, I had no problems with the deep purple that area became, nor any pain).
Then I read the side-effects of throat cancer rads. Yikes! I'm not as frightened as I was before the b/c diagnosis came and I felt I'd die ....in.... like.....minutes, but this looks like very painful stuff.
I had a CT scan on Tuesday and my rad onc appointment this morning. The rad onc gave me the basic info: early stage 2, no node involvement, nothing metastasized. Radiation will be 5 times per week for 7 weeks. The rad type is IMRT (I think it means intensity mode radiation therapy) that involves 200 beams. I have the simulation appt on January 28 and have a PET scan the following day.
The doc confirmed that yes, it's all painful stuff, sometimes very painful, but there are some pretty good drugs to handle most side effects for pain, as well as procedures to go through for the other side effects. He doesn't insert a peg unless the patient demands it or if there becomes a good reason to do so. I asked if I'd be able to drive myself to the treatment center (about 2-3 miles away) and he believed that I would be able to do so unless I take pain meds too close (within 4 hours, I think) of the appt. We'll see. I really liked this guy, btw.
I see that I've gone on and on, but it's a catharsis of sorts. I haven't told anyone about this but will now that the diagnosis has been made. I didn't want to upset my daughter nor did I want to be the drama queen to my friends who were there for me during the breast cancer experience.
I think this message board is terrific. I looked at about a dozen and find this to be the friendliest, most interesting, helpful and understanding. A few boards were such downers ("It isn't fair! Why me?" type messages) that I'd be hoarding meds for a painless escape. No need for that here!
Thanks for listening. Am sure I'll be back with lots of questions and pleas for advice.
Hi Mimi, Welcome to the elitist club
free membership and no bull approach.
I was very sadden to read your posting but you came across so positve that really is one thing that keeps us all going.
Yes we all have our bad days and where else can you post to at 3.30am and feel better for sharing your fears,pain and anxieties.
I have to Applaud Dr Joshie as the site has gone from strenght to strength and more and more people are logging on.
I found the site by chance looking up where I was born in Yorkshire on a web site and saw an article in the local paper and I Have ben on here seen.
Not only has it helped me very much but have made some FRIENDS who stand behind me whatever and as in life thats very hard to find.
I am goig through a crisis not realted to th C but this helps me keep positve about the way I am now and seperate one roblem from the other.
WellMimi once again welcome and I am looking forward to reading youe story on here soon
your story is similary to mine..... however, i never had the breast cancer or for that matter any other form of breast cancer.....
and yes, this board is an excellent tool to learn more about what is going on in this area. however, you are way ahead of me as far as knowing about the details... it was only recently that i finally became aware of the fact that IMRT is the type of treatment i had.
you are lucky in the fact that you only have to drive 2 or 3 miles... me too, i was only driving about maybe 7 miles and i did drive alone to each of those treatements except the one time that my wife nagged me about wanting to listen to the doc on my 1st appointment with him after i had gone thru about 5 of the treatments.... that was the only time she went with a doc to me other than the time i met with the ENT, chemo and radiation Doc's. i preferred to go alone against her wishes...
you can read a synopsis of the events in my treatment in survivor stories.....
good luck and Paul is one of those great guys who has already introduced himself to you....
pete228 made it through the treatment (link edited to take you directly to pete's story, and by the way, "Welcome Mimi" )This message has been edited. Last edited by: Dr Vinod K Joshi,
My good lady has just completed her course of R/T and yes it is not pleasant. However she has come through it better than I had expected and I hope the same for you they seem to have caught it early.
Getting this disease twice but unrelated is a real body blow, but having already beaten one form you must be positive about winning this new battle. Telling folks itself is a burden but you can make it easy or difficult for your friends and family to help you, and agianm as "cancer" is not new to you the job should be easier.
Good luck I pray that treatment is not too debilitating and more a complete success, keep positive talking is a real good therapy, and not all of us can do it but you are doing fine. Alan
Sorry you have had to join us, but welcome to the board. My story is a bit similar to yours in that I had breast cancer four years ago (had lumpectomy, chemo and rads like you) and was then diagnosed with tongue cancer last year. It doesn't seem fair does it? I had surgery for my tongue and haven't needed radiotherapy or any other treatment but I wish you the best of luck with yours. Hopefully we can both beat this thing twice!
Thinking of you
Welcome to the boards. It really is a remarkable community.
Welcome to the boards. I am ten weeks out of radiotherapy, but I also had chemotherapy and luckily no previous cancer.
You are lucky that you only have 2/3 miles to go for treatment. I had to do a 40 minute drive each way and had a rota of people who would drive me, so that I didn't have to drive myself.
Try to keep positive. Absolutely no point going why me.
Remember to start using cream on the area being treatment as soon as you start the radiotherapy including the back of your neck. I recommend getting a supply of Radiance Gel, as this was very effective for me. Also get your specialist/GP to prescribe Gel Clear to help the inside of your mouth to heal. Personally, I found it useful to be as well prepared as possible.
The radiotherapy doesn't hurt, but your mouth does get sore. Keep an eye on your weight throughout the treatment and take supplements (Ensure type is best) to try and maintain your weight.
Check your mouth gap and start mouth exercises as soon as you start treatment - seven times a day - seven repetitions. I didn't do enough and now am having to get a Therabite to increase my mouth gap.
I managed to get away without having to have a tube or PEG and I'm convinced that it was because I ate extra before the treatment and watched my weight very closely. At present I'm still on two supplements a day, but apart from that I'm eating most things.
You sound like a determined lady. You can get through this. I found it helped me to tell as many people as possible. Many people sent me messages, cards, visited, offered lifts and several even offered to do the ironing. All that support really helps.
hello and welcome mimi
this is such a valuable place to come to when the the chips are down or up we all try to be positive on here(such a cliche at times) but when you are desperate and feeling low it is so uplifting to hear all the success stories . i have had cancer twice in 12 months and i am having another biopsy for another iffy area in mouth next friday i thought i would be in pieces but i am quite calm at the moment the biopsy is nothing compared to the two week wait for results which i find most difficult
good luck with your treatment and speak soon
Hi and welcome.
Never take your eye off the ball it may just smack you in the mouth
Welcome Mimi. It's a shame you have to join us. Only had it once myself (and hopefully it's going to stay that way), I really admire peoples fighting spirit when it strikes more than once. Personally my RT side effects weren't too bad so hang in there. Hagg.
15 years and still kicking it. Never give up your fight.
Welcome - You can be a drama queen all you want here. We all have arant or wallow now and then.
I can tell you there were friends who totally got my unspoken torture and family who still do not get it. My advice always is choose carefully friends and family to have near you in the coming months.
Radiotherapy has so far given me over 5 extra years. So yes of course it was worth the discomfort. Like you my skin is very pale. I burnt, but I kept my fingers out of it and it did heal. You are already way ahead in that you know what the linear machines etc looks like.
You can do this. It's not pleasant and sometimes takes massive will power to drag yourself for anothe rtreatment, but it is doable. I am convinced a stoic attitude helps during this treatment. Tell yourself you will get through, tell yourself to be calm and you will be. If possible have your appointments booked for early in the day to get them over and done so you can just do the rest of the day at your pace. Be kind to yourself and rest, collapse on the bed for 2 hours, walk a bit everyday to keep muscle tone and hibernate if it suits you.
It can help to monitor your days for pain before and after radiotherapy treatment on a scale of 1 to 10 in a notebook and as the days go up, then eventually down feel reassured when you see improvement.
You will find members here who have had treatment recently who will be able to relate very quickly to the stage you are at.
Re scoping - My ENT has never failed to scope me on any visit in the past 5 and half years. I find it helps if I take a sip of water before he scopes and then does the spray. This is important especially after rads since the throat is naturally drier after and can get scraped. I don't mind the scoping now since after rads I had to have a nasal tube put in which he did whilst using the scope to see where the naso-gastric tube was going until it met the stomach. So 2 tubes one down each nostril was possibly one of the worst experiences along with having the mask made. Still, starving to death is nastier.
But when you know these things before, somehow it makes it easier. There is much more info on the web about head and neck cancer compared to 2002. So you will find many questions easily answered.
Good luck. I also reccommend the Acor H&N listserv which can be very informative and quite positive.
Hello Mimi, I regret you have had to join the club but welcome all the same. This is a great site where you can scream and shout all you want. You can be assured someone who already has the Tee shirt will be able to respond to any questions or problems you may have.
Keep positive and focused on getting better.
One year out for me now and i can say i lear new boundries and tricks weekly! But my life is in a better place now than ever before!
So good luck with the bumpy road ahead. & you can always count that there will be someone here to help and advise you!
All the best - Michelle (The baby of the group)
-~*Great spirits have always encountered violent opposition from mediocre minds*~-
My name is Ananth and I am usually the joker in the pack. I am the one who makes people angry, happy, smile, cry and joke around - one who just enjoys life. I have been around for seven years on peg feed - but have been very active in the sense, I just got back from a long last trip - Australia, Spain and back to India.
In my case though - the cancer has returned but is still puzzling my doctors as they cannot figure out as to why I am not getting cancer pains or remaining as active I am so ( I go to the gym for a hour every morning and run a good 2 miles- old habits die hard).
I read your post a couple of days ago but could not respond just then due to circumstances and it really hurts to see a person join this club as I dont think anyone here would have liked you to have the illness. However, since you are part of the family now - welcome. I am sure you will make great friends and get sound advise for any problems (emotional, medical, the works) that you may feel you need to talk about.
So once again, Welcome to our Club and let us all hope you are well very soon. I am truly happy about your mentioning the words 'why me?" etc. as it is crazy if one believes in it. If it had to happen - it has happened and thats it. Take it in your stride and live life to its fullest - every minute, hours and day.
We are all here and will be backing you all the way,
With lots of love xxx and hugs( I ususally do not dole out kisses on the first post- so thats a first for me!!)
Live on your beliefs and strength- and you will become immortal.
I was so sorry to hear that the cancer had returned and hope that the doctors will be able to treat it.
You have been set such an amazing by being so positive and I hope you can continue to do so.
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