Hello as some of you know I am new so please forgive me if this post gets to the wrong area.

I really should be resting as I am going into the high school tomorrow to work around those wonderful kids who I like so much their spunk and have decided to NOT share with work or coworkers/ boss yet as I dont even know my course of action will be and what to say or how it will affect my job responsibilities but this seems to be the be forum to express and share my concerns and I appreciate that so much as the shadows of the night come about and I am meeting with the oncologist tomorrow to review the results of my pet scan and had a unprofessional exp. with a radiation office today so am going to seek another as in this process Id rather be around good vibes then not and it's my choice huh? I cant stand stupid admins lol ( yes I maybe extra sensitive these days too) However, after reading some other posts here and digesting my stage 3 lymph node neck mass, I am a bit freaked tonight and have an appt at the Mayo next Tuesday to have them make additional recommendations and studies as the the docs are recommending chemo-radiation and I have been sober for almost 30 years and have a huge reluctance to having those drugs in my body. My first thought is take it out with surgery and then if that does not work try chemo radiation so what I really need to hear from those of you with experience is do you think a week and half at this stage in the game will hurt me? Seems like I cant put this off or ignore it huh not even by a month? Wish I could that would make the reality of it all go away. I know, it is NOT going away. I am stubborn by nature and tend to minimize things and am not afraid to die but have some dreams that still need to come true and now I like ALL of you with this cancer have a common bond and WOW what a curve ball utterly amazing still wishing I could have changed this fate of my affairs but also am a compassionate person so maybe my higher power has placed me on this earth to share the exp. I also dont and wont have a caregiver except my 15 yr old son who is an above average student and playing basketball and in band playing the Clarinet and the last thing I dont want to do is burden him with this and the biggest downfall for me will be sharing this with my ex only for my sons well being as I dont endorse secrets nor want my son to keep it from his Dad so if any other single parent has experienced that too I would love to get your feedback on what worked for you or if anything just to know I am not alone...

Good night all

Welcome to OCF Muffy, glad you found these forums, sorry you had to!

First and foremost, breath, and relax a bit because in many ways, you are ahead in the game.

You are being seen at the Mayo, which is one of the best programs in the country for cancer, and Otolaryngology. When it comes to cancer, the best advice is always get the best medical advice available to you, which is generally a NCI designated CCC, which the Mayo is.After that the only thing we can control is our attitude, and nutrition.

Treatment is hard, and you've been diagnosed in a later stage, so time is of the essence. You are in phenomenal hands, so I would take the treatment plan your medical team comes up with and run with it as soon as you can start it.

I was very fortunate to have a great team around me, but it was tough, I would ask family or friends for help during treatment as that's a tall order for a 15 year old. I was always amazed at the generosity of those around me, we just had to ask, which can be hard, but people "wanted" to help, so don't be afraid to reach out.

Best of luck to you, and plug into these forums for support from those that have been there and done it.

Eric

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.

A week and a half is nothing when it comes to waiting for treatments to begin. Your team of doctors know what they are doing when they developed your treatment plan. They have years of schooling and have treated hundreds in similar situations. If you are still uncomfortable and second guessing the treatment plan, you can always get a second opinion at another CCC. The only known cures for oral cancer are surgery and radiation with or without chemo. There isnt one of us who wanted to go thru the treatments but look at the thousands of members who are here to help you along, we got thru it

As a single mother, I am going to tell you like it is. You need to prepare for the fight of your life! Keeping secrets should not even enter your thoughts. You WILL need help! The sooner you accept this, the easier it will be. Now is not the time to be proud. Start talking to friends and relatives, explain you are sick, have cancer (dont need to get into the HPV thing) and will be going thru some brutal treatments where you may not be able to drive, take care of yourself let alone your son. When people offer their assistance, write down every single person and their contact info. Get a biz card from every doctor you see and keep them together in case one of your relatives needs to call the doc for you.

Call the American Cancer Society and ask for help. They are available 24/7 so call them now. Tell them you will need a volunteer driver. Get moving on this right away. You probably will lose your ability to drive during treatments. I made it thru the only first week before I gave it up. This process takes a little while so get moving. They will also give you up to $300 in assistance towards either prescription meds or your transportation costs. Talk to your treatment center and ask about visiting home health aides/nurses. Ask at your church or any groups you are involved with for help. You must speak up and tell people you need help. I always say if you dont ask, you dont get.... this is a very good example of that saying. Speak up and ask for help and you will get it. You really could sail right thru not needing much from anyone or you could hit a brick wall in week one. Your intake plays a big part in how well you do with the treatments.

You need to focus on your intake. Thats what you have control over, anything else put it aside until you are well. From the moment you wake up until the moment you go to sleep, your main priority must be what you take in. This is what will make or break you. Every single day force yourself to take in a minimum of 2500 calories and 48 oz of water...... even 3500 calories and 64 oz of water every single day is not too much...starting today!!!! During your treatments, this could become difficult, your sense of taste will be off and swallowing may become hard to do. Your sense of taste will change and food wont taste like it should but you must force yourself anyway...if not for you, for your son. Too often patients will skimp thinking its ok for just one day but that "just one day" will quickly become a habit and skimping will become your daily routine. Its NOT ok!!!! You have to hit your minimums or you will suffer.

Best wishes!

Hi, Muffy
when my husband was facing treatment, my main worry was that I would get sick, and not be able to drive him to his appointments when driving himself got problematic. I sent out an e-mail to friends and relations summarizing the situation and was amazed at the response I got.
Think for a minute - if a friend contacted you asking for help with driving or shopping - you would help if you could, right? If you begin to set up your support network with the resources Christine mentioned, and with reaching out to friends and family you will be in a much better place medically and emotionally. Remember, the key to getting through the treatment in good order is nutrition, hydration, and not getting in a car accident by driving when you should not! Your changes for a cure are improved by completing your treatment as scheduled.
As others have said, there is no need to share the exact source of your cancer.
Maria

Hi Muffy,

My husband is also very independent and private and told only our closest family and a friend at first. I stayed with him in the hospital and would do the same for anyone who asked me to stay by their side through this fight. The nurses were really open and mind but they have many patients to see, so I was of help in critical and unpleasant situations for my husbands every need.( His case is different in that he had a trachea but you will also need help for all sorts of needs)

Even if its just for the emotional support, you should have a team of helpers on a rotating schedule or people that can be assigned to different tasks. For example, making all those calls and all the research is more than a full time job. Cooking puree soups and saucy meals that are high in nutrients and easy to swallow.

As a teacher the first people that will guide you through dealing with a medical/sick leave is your 'Union'.

Your doctor will also send a sick leave note to the principal at your school and he will forward that sick leave to your employer, your district office 'human resources'.

You are under no obligation to explain why you are sick, but you may say that you are undergoing a medical emergency or simply that your doctor put you off of work for medical reasons.

If you have accumulated unused sick time, you should be able to use it all up. Some teachers have a year or more accumulated and this insures no break in their pay. You may even be able to borrow a few weeks from next year if you run out of you sick days.

If your teacher's union requires all teacher's to be part of a 'group insurance' than you would want to contact them and see what you are covered for. I know in the case of my insurance they would want to be notified within a certain time, EG: a month. Otherwise there might be 'employment Insurance' benefits for long term leaves, and it is worth giving them a call later on when life slows down again because they may have some kind of specialized funding. I know in Canada, you can apply for your pension plan if you payed into it and you are between the ages of 18 and 65.

You are in my thoughts, Sophie

I am somewhat the opposite of most here so I will say... if it is HPV related... well firstly it's all over the news so it's not a big secret - so clearing up misinformation is actually a good thing. Secondly, unless you are the virgin mary - you can catch HPV. Anyone who is having (or has ever had) sex can get HPV. HPV is so common that nearly all sexually-active men and women get it at some point in their lives. This is true even for people who only have sex with one person in their lifetime. It doesn't mean you've slept with half of the state or that you are promiscuous or that you are heavily into oral sex (in fact they are not even sure if you can get oral cancer from oral sex as far as I know that has not been confirmed. You can catch it after having sex with an infected person just once. You may have dated slept with and married one man your entire life and still catch HPV (from him) - if he has it and all he needed do was to sleep with one person who had it and referring to my above comment - doing that is something that is actually hard not to do. It's that simple. The unfortunate thing is the strain. There are 40 different kinds - 16 (and one other number to a smaller degree) is the strain linked to oral cancer. Dumb luck... like winning the losers lottery I suppose - to draw that number out of all the different types. So if anyone judges then they might want to take a good strong look at themselves - unless they are the pope - chances are they've been exposed to some form of HPV) this is why they give gardasil so young - to what they expect to be non sexually active teens)

Being an educator I would read up on it and know the stats. Then do what you do best... educate. Tell them about oral cancer and the MANY ways you can get it and the suspected causes. You may save some lives in the process.

the rest - has been covered by others. hugs.

Muffy - I hope you are writing all this stuff down. You have been told a LOT of important stuff in the last 24 hours since you joined the family. All of it is important.

Like I said before, you have a steep learning curve to climb before treatment begins. I hope you have realized the gravity of what is about to happen to you. Cancer and treatment for are brutal. It truly will be the fight of your life.

If you're not writing this stuff down in a notebook, then print out all these posts of the last 24 hours and pin them to your wall. Reread then daily until you are absolutely sick of them -- or -- you know what you need to be doing.

Put a check mark by each one you've done. This is stuff you don't want to ignore, doing so will I promise make your life absolutely miserable over the next 2 months.

And the most important one of all is (you already know this)
--- Eat ---Eat ---Eat.

Show these posts to your son, so he also knows what you need to be doing and can tell you when you're falling behind.

Now, get busy.

Ditto on all the good advice. One point I feel strongly about is the one Cheryl addresses; that is, communicating your disease to others. This is a VERY personal matter so each of us needs to make the decision that feels right for you. Some people are naturally rather closed while others are more open and sharing.

You never know what is inside people's heads. Some are outgoing and social types yet clam up about divulging their cancer situation. Full range of not sharing anything with anybody, even family. Others share everything with everyone. And everything in between and any point along the spectrum is the best for each person, there is not right, wrong, good or bad.

In my case, I have two teenagers and felt if just one child got vaccinated for HPV that otherwise would not because of all the FUD (Fear, Uncertainty, Doubt) then it was worth any personal downside. Once I felt that I might truly save one person from getting cancer, then it was a no brainer. That said, my wife and son were of a different mindset and more worried about the social ramifications by disclosing this to the community.

I built massive email lists with anyone I felt would recognize my name. One exception was I did selectively exclude a few clients with whom I felt might affect my livelihood in the short term and being independent I had to protect revenue just to keep the lights on and a home to live in.

Well, everyone survived and I did get some notes from mothers on the fence about the vaccine and at a minimum were going to have a more informed decision with their pediatricians.

At every turn, I try to use my illness in a way to help others. Just this past week, I heard about a father we've know for years as the kids grew up - he has Stage 4 prostrate cancer that has metastasized into the bones for which he is receiving radiation. I reached out to him to offer support, if nothing else, swapping cancer stories and offering some comfort.

Do keep reading here as there is much info that will help you throughout your journey.

Don

The best thing we did for our children was involve them in the ins and outs of tx. We didn't want them to be alarmed. They were 11,13 and 15 at the time. Old enough to understand the severity of things and know that we would need their help sometimes, but also needed them to remain focused on their studies and try not to worry too much. Please let your son speak to your docs or nurses if he has questions. I was amazed with the questions the kids asked. Things I would not have thought they were even thinking about.
Stay in touch with us and we will help you get through this. It will truly be a tough battle. You will have to have help...don't wait to have it lined up.
Only other comment I have is as far as having surgery and seeing if that alone works, you get one chance with this; Hit it hard with all they will give you the first time.
Keep in touch!!
Kathy