Anyone else feel like this? When I saw my doc yesterday I told him that I'm looking forward to the end of RT but will miss the sense of security I have while there, being able to ask questions, chatting with other patients in the waiting room, getting a quick diagnosis and help if necessary. The doc said that someone would be available by phone 24/7 and that for the next several months I would be seen immediately if the situation warrants a visit. What sort of questions did I foresee? I said that as the texture of my mouth changed that I’ll want to know when I get thrush and what to do about it. He replied that I had it already and the mouthwash he gave me last week was for thrush. Duh – I had no idea! He also said I’d be alternating between him and my ENT doc with probably more follow-up care than I cared to schedule. Humpf. We'll see.

I'm doing far better than expected. I'm still able to drive myself daily, go grocery shopping, visit with friends and even had a hair cut this week. I was given 100 Vicodin (7.5 mg) to take every 4 hours, 1 or 2 pills as needed, and began taking a few over the weekend. Saturday was a rough day - I don't know why - fortunately every day since then has been far better. Saturday my entire mouth felt like a gigantic burning stinging throbbing open wound and I was nauseated but eventually, thanks to Vicodin, was able to sleep it off. Haven't needed the pills since Sunday, but have no aversion to pain meds whatsoever (my memories of the Sixties are a bit hazy at times). I lost a lot of my sense of taste but some stuff tastes burned (why cheese?), I tire easily and sometimes I wake up with my tongue stuck to the roof of my mouth. It's probably a combination of dry mouth (I use Biotine gel for that) and because it's springtime, I'm a little congested and sleep with my mouth open. I still swallow but chew everything until it's mush. My doc doesn't give feeding tubes unless absolutely necessary, so it's essential for me to keep my throat open. I think I've done enough swishing, gargling, spitting and slathering to last a lifetime.

As I've said before, I feel I'm luckier than most: it was caught early, no node involvement, no surgery, no chemo, and I have a good prognosis (I cross my fingers when I say that). My RT is IMRT, the type of radiation that Dr. J is pushing for to be covered by the NHS, so that's probably a factor as well.

When I think of how awful Saturday was and when I realize that the first three weeks or so after RT are usually the worst, I know I'm just building up to it. My doc says it's inevitable and to be prepared. Yikes!

I've been doing some private messaging with Fran, Bell and pete228 and appreciate their help and concern. Pete228 is my hero - read his survivor story to see what I mean (he was also on IMRT). I was determined to weather this as well as he but I'm afraid that I'm already on the downside more than he ever was. Rats. Bell and Fran keep me laughing - another good throat exercise!

Here's a story that I've shared with pete. Early on I was afraid that I wouldn't be able to drive myself to and from treatment so I contacted the American Cancer Society for rides. Locally they'll give three rides per week; everything else is on your own. If they don't have enough volunteers for the three rides, they'll pay for a taxi. I signed up for the rides thinking I'd need them. Each week I'd call to cancel for the following week - I thought it would be easier to cancel than to set them up at the last minute. The third time I did this, the transportation coordinator got a little snotty and asked why I scheduled rides that I didn't use. Told her that I thought someone who really needed a ride could use the services of the volunteer driver whereas I felt well enough to drive myself. My explanation evidently wasn't good enough, so I let it go. The following week I decided I'd accept the rides because maybe if I didn't - who knows? Maybe I'd be put on a Transportation Black List.

So, last Tuesday I had my first ride with my volunteer - he'll be taking me on Tuesdays and Thursdays for the duration. He lives close to me, is probably around 75 or so, has volunteered with ACS in Sac for 15 years.

Holy crap! I think I could have driven better on drugs! Of course he was driving a Buick about the size of the state of Ohio, never remembered to turn off the turn signal when he changed lanes, asked me "Is it clear on your side?" after he changed lanes, and on and on. Oh yeah - can't hear very well either. BUT, he's the nicest guy ever and has some heart-wrenching stories to tell about people he's transported. I have a feeling I'll hear all of them.

Today he drove again. I think he's trying to kill me. When we got to the cancer center he stopped at the valet service and told me to get out, saying that he saw a spot where he could park on his own. I said, "See you later in the lobby," and opened the car door - he proceeded to drive while I was only half way out of the car. I'm half-in and half-out, dragging my foot along the pavement, banging my head on the door jamb, when he said, "I'm sorry - I want to get that space," but didn't stop! If the cancer doesn't kill me, Bob will.

Hi ,
Yes i do feel like that even though i have just started my radiation i have made alot of friends there in the waiting room and the staff there is great.

I want to thank you for that story it made my day a good laugh is always so good..
take care
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

Brilliant, so funny. You just couldn't make it up could you. So pleased that the treatment is going so well and hope that it continues to do so.

Hi Mimi ,I am so delighted that you are nearly through and doing so well obviously this new IMRT has definatley got the edge .I am having to pull my self together here laughing about your designated driver BOB !!!.When my girls were doing their driving lessons one of the catch phrases from the driving instructor was always look for BOB ,Boy On Bike !!! sounds like your Bob would be even funnier peddling a bike ,parking it would be easier allowing for a side cab !.

Paul did feel the same Mimi when we came home and finally lost the support of daily hospital visits but our family doctor and liason nurse from clinic took over via phone with any problems in between clinic visits so do not worry all will be fine .The friends we made during our time through RT we still see at clinic visits so you will probably keep in touch with them also.

I have posted what we were told at the visit to London .
Looks as if Paul is elligible for the IMRT but will need to do the full course bar one week so we are a bit worried,as he has already had full course of original plus combined chemo, but we are interested in your progress which seems to be going well MIMI.It may be they will decide to operate and do the Brachy therapy but may need to go through mouth and gum area and insert the RT that way so will find out next week via phone when have decided now they have seen Paul.

Either way treatment will not commence till after our daughters wedding on 9th of May so he has some time to enjoy life before we get back in the saddle for round 2.

Regarding "Bob" Mimi if you have ample easy parking at your place of residence,maybe u could offer him a cup of tea and replace your long handled soft cloth for applying your cream to your awkward areas, with Bob ,Tee Hee.

At his age he may take cold feet and designate you to another more competent driver.(thought ur sense of humour you may enjoy that one ).

Well done Mimi, you are nearly through keep us up to speed with everything .
Bell x

Hi, my name is Leann, I felt the same way during radiation. Course I also had chemo at the same time. But the weekends were always the worst for me. I had Chemo on thursdays and by Saturday I always felt like my throat was on fire and in terrible pain. Fortunately I never had much naseau with the chemo. And no hair loss. Though that was disappointing, I really wanted to lose it and for it to come back it curly and full. LOL Mine is straight and flat.

It is ironic that these people, who at times I felt were absolutely torturing me, were also the same people I felt the most comfortable with.

Good Luck and keep the faith. Things will get worse, but remember they will also get better. And while there bad you are killing the Cancer. That thought always helped me, I always tried to think of a little war zone going on in my neck. My family would laugh when I told them that, but it was true. Now my doctors are some of my closest friends. I actually talk with them more than anyone else and not just about medical stuff.

Do keep swallowing, that is definitely a must. Also remember to keep stretching your neck area and jaws to keep fibrosis from settling in. I did a lot of massage too. I am sure many others have told you all this.

Though I don't post often here, I read alot and everyone here is very supportive and gives terrific advice.

Remember to have faith it will carry you through more than anything else.