Hello again Muffy:

Might I make a suggestion right up front. Just as you are trying to get to know us, we are also trying to get to know you. If you confine most or all of your posts right now to your introduce yourself thread instead of across multiple threads in different forums the process will be much easier for all of us.

Here is just one of I'm sure many ways to approach this. Until you actually start treatment, make all your posts in the introduce yourself thread. Then, once treatment starts, begin a Currently in Treatment thread. Stay put there until treatment is over, then begin a thread in the Immediate Post Treatment thread. Doing it this way allows other readers to see ALL the issues you face during that period of your cancer journey. Going the other way, unless we are first lucky enough to find and then read your posts across multiple forums we won't see or know all the issues you are facing.

Now, as for 1.5 weeks. If that's all you have to wait to begin treatment, you may have set a new world record for getting started the soonest. Many of us had to wait over a month, first for surgery, then a month to heal, then wait another month for treatment to begin. The waiting seems to go on and on forever. It seems the doctors just don't understand we have a deadly disease inside us that we want out; yesterday if possible. What we fail to realize is we are not the only person they treat. When I was under treatment the patient medical file rack for my radiation therapist was absolutely full of files. She had to treat all those patients once a day, 5 days a week. The other therapist had an equal size file rack. So, if you have to wait your turn, slow down, take a breath, give them a chance.

If you get radiation, they will do a "simulation" first before they actually start zapping the tumor. From simulation date until first actual treatment I had to wait over 2 weeks. I thought that was excessive, but other forum members showed me that is very normal. So, don't gripe about 1.5 weeks. Now, if you were a super VIP, like a president, maybe they would bend and start you tomorrow. But, for us mere mortals, it's wait, wait, wait.

Now, as for telling others about your oral cancer, you have to choose how much you want them to know. As there is a stigma about STD's in this country I have been very reluctant to tell most people my cancer is caused by HPV-16. They know I have cancer, but they don't know how I got it. Even my ex girlfriend knows I have cancer, but she has never asked what caused it, and I've never volunteered it, and she is a nurse, not a very informed one it appears. Now, if she ever asks me straight out, was it caused by HPV, I won't lie. It seems the very few I've told voluntarily that it is STD caused, they seem to take an immediate big step backwards in the relationship. And then there are a few who are pretty informed and able to know what questions to ask right up front; those people I answer honestly.

So, I guess you have to be the judge of who you tell and how much you tell. Of course any people you consider getting intimate with in the future have to know right up front.

Now, as for caregivers. I know you don't want one, but you may need one. We are all different in our side effects and needs. I was very lucky and sailed through radiation with little to no side effects. Side effects that hit me in week 7 (the last week of treatment) and that were fairly miserable hit many other people by week 2 of treatment. If that had happened to me it would have been much tougher if I didn't have a caregiver. I understand you are reluctant to use ex-husband, and don't want to load your son up with responsibility, but this may be bigger than both of them and you. If needed we take our caregivers from wherever they come, family, friends, co-workers, neighbors. It really can get that bad. So, start making your list NOW while you still feel good, because later, if you feel bad, that is not the time to try to line up caregivers.

I only had radiation for treatment. If I had also had chemo I promise it would have been much worse and I would have needed several caregivers since I didn't have a live-in caregiver. I am also lucky to have a lot of friends, many of whom volunteered to help me in any way needed; even to come clean my house or cook a meal for me or do grocery shopping if I asked. They offered me way more than to just come drive me to and from treatment. I am very independent, like you. And with very few side effects it was easy to not need a caregiver. But, like I said before, I am one of the very fortunate few that had almost no side effects. I hope you are that lucky too, but if you aren't, then be prepared. Don't say I didn't warn you.