Ambra, you are part of our OCF family now. You were from the day you joined our forum. We all watch out for each other. Many members have become my life long friends. I am lucky to have met OCF members from around the country, even a wonderful one from Canada and her husband. When we get to meet, its like we have known each other for our whole lives, like we really are long lost relatives. Of course not everyone wants to get that close, some prefer to remain anonymous which is perfectly ok too. We still think of them as part of our extended OCF family anyway and respect their privacy. Who knows, one day when all this is finished you may be getting together with a group of new friends from OCF. Guess you know we really are here to support you and we do have your back.

Make the very most of every single day. For many OC patients planning for the future is something many stop doing. Just keep this in the back of your mind.... when everything is finished next spring and summer you will be doing so much better, maybe you could attend one of the OCF walks closest to you. Never know what the future holds.

Ambra I am so sorry you are not closer to where I live. Mind you we are Canadian so you'd be visiting in OCT! When we have our thanksgiving... Some people are insensitive and callous. It's so bizarre I have had a friend since grade three. The year I was diagnosed it was just before Christmas. I had called her two days before and told her I would like to take her out for dinner. Now she's a little set in her ways - she doesn't like to go out late, gets tired easily so figuring out a day and time was going to take some work. We agreed to do it just not when. I told her we would touch base. Then I got my Dx. Admittedly, it was my fault for not calling her back... However - I went into fix it up and get it sorted out and get through Christmas mode. I did wish her a merry Christmas. I think I ended up having to leave her a message. I did not tell her about my cancer until later (I didn't want to be a downer - and frankly that is part of the reason I hadn't pushed the dinner thing as well because I really want to give her my bad news over the festive season - Anyway, I ended up telling her after I had finished treatment - Mind you I kept people updated regularly via facebook so - likely she did know on some level. But I did realize something else while I was going through it all - I was the one who always used to pick up the phone and say - hey how are you? and coerce her into going out. My neighbor who I would classify as my BEST friend said - if I were her I would give you heck for not telling me. She just said sorry for what you've been through when we finally talked. I'm not sure if it's just her nature... or what but we're still friends but yet we generally go for months without talking at this point. SO it's more like distant friends.

I get that some people don't know what to do or say. But really some people are very wrapped up in who they are, their lives, and having a FUN time.
And if where you're going is a little off the beaten path and kinda scary... they don't want to go there.

hugs girl - hopefully it was a good day for you.

Ambra,

It's also pretty common that people that people "fade out" when what they perceive as the crisis is over. My experience was a lot like yours. When the obvious "event" is over they think it's done. I had one friend who visited in the hospital and then at home, but after I was back to work, I think I have seen her twice (both at my instigation). I really don't thin k people realize the leftover consequences of this disease. When I explained the recurrence risks to someone, they were shocked, as they had assumed it was over.

Plus, there's all of the psychological effects of going through this, the fight with eating, swallowing, talking, which takes a toll. I'm happy that people say my speech is great, but they don't realize the additional effort it takes (not only in ongoing speech exercises I still do, but also just focusing on certain words which still have some difficulty). It's mentally exhausting.

With a bit of distance now, I realize I have done the same things, although I hope to a lesser extent, with people. For example, when a friend's mom passed away, I cooked for her family for a bit, and checked in, but it didn't occur to me to call on occasions because I thought she had family. Now I realize I should have at least called and made an offer. I'm trying to be better, and really that's all we can do.

I have not responded for a while because I was and still am at loss of adequate words to express my gratitude for your wisdom and kindness. You guys are absolutely incredible. Thank you so very much! And thank you for sharing your experiences, which seem to be more the norm than the exception.

I am looking forward to meeting OCF members in person when the possibility presents itself. And I will try to find out more about OCF walks in DC area.

I have decided, in the spirit of tomorrow's holiday here in US, to be grateful for all the support I did get (I already am, do not get me wrong) and forget the one I did not. Thank you to those couple of local people that did not disappear, thanks for the help of the other locals after the surgery, for all the rides, for all the support from non-local friends, including the virtual ones. I am trying to push away these current feelings of hurt and lower my expectations. Maybe I am being needy and self-centered. And I will survive being alone and sick on one or more holidays, there are worse things out there as we all know all too well.

To shift the the gears back to the original topic, I only have six treatments left, am 80% done!!! I get a four day break from rads to recover a little. I saw my RO today, and he was quite pleased with my condition. Said I was a textbook base and that he will put me in his next textbook, don't know if this is a good or a bad thing. My throat hurts some more, and the taste is even worse, but it is what it is. I hope it does not get much worse than this.

I wish you all a very happy Thanksgiving and hope you get to spend it with you loved ones.

25 done, 5 treatments left! I am almost there.

I have a question here about Silvadene cream, more specifically it's removal. My neck burns have gotten pretty bad, I have to use Silvadene all the time. However, it tends to dry on the skin into this cake-y, flaky texture that is quite difficult to remove, and I have to remove it all before rads, obviously. Today got really bad, a very gentle scrubbing of the residue in the shower lead to a 10 min crying session while doing it, I felt like a little kid. The burnt skin was even bleeding a little. And my super gentle Aveeno shower gel burned like hell.

I have spoken to a very nice nurse about it after getting my rads, and she said to soak a very soft cloth into warm water and keep that on the skin for a while before attempting to remove the residue. Any other tips and tricks out there? I really do not want the whole episode to repeat tomorrow. The nice nurse also gave me some special wound cleanser to use on the burn, hopefully that will help too.

You may be putting too much on. It doesn't have to be super thick. We did what your nurse suggested. We wet down some gauze with warm water and let it sit a bit them took them off and repeated until it was gone.
Sounds like you are doing quite well..congratulations.

I never used it. I only needed aquaphor. I heard of Domeboro soaks, but know nothing other than the name, soaking for skin irritation. Good luck.

You can soak gauze in a solution of Domeboro and warm water. Lay it on the weeping burns and they get better literally over night.

Hi Ambra:
Haven't checked in with you in awhile. Sorry the rad burns are as bad as they are and hoping the Silvadene removal works as hoped. I remember reading Christine saying to someone else you only need a little of the cream to work.

With 16 rads still to go I'm way jealous of your only needing 5 more.

Hang in there, every day is one day closer to joining you in Post Treatment forum.

Tony

P.S. Really enjoyed our Thanksgiving conversation.

Cheryl, no offence, but your sister-in-law sounds hideous.