Hi Dizz!

We all have been where you are and we all understand how you are feeling. Its NOT easy, not at all!!! Take those who seem to sail right thru everything, they all have at some point struggled no matter how calm and resilient they appear to the world. Over the years, Ive learned thru so many others that facing the cancer diagnosis and treatments are similar to the stages of grief. Having all those emotions coupled with everyone's ingrained fear of the unknown can easily become overwhelming to both patients and caregivers. Sometimes people need some time alone to reflect on everything thats going on and whats coming up. For others, they may prefer to keep super busy or surround themselves with friends and family. No matter what path you choose, it really is ok. Nobody should ever feel guilty for their choices of how they mentally manage what feels like the weight of the world on their shoulders.

Unfortunately the public is completely out of touch when it comes to understanding oral cancer (OC). Many have never even heard of it before. In the US there is such a huge movement for awareness for breast cancer, so much so that it even has its own color that people wear to support it... bright pink! When the general public thinks of cancer they automatically think of the biggest ones like breast, lung, prostate, skin cancer, etc. The average person does not know anything about OC, nothing at all. When I was originally diagnosed in 2007 I didnt know OC was even a possibility, I had never heard of it. I had no concept of what having OC meant. Fortunately, Ive always been someone who reads and investigates things I want to know more about. In my quest for more info, I discovered OCF. I couldnt believe the hundreds of strangers Id never met helping me! Those kind hearted patients and caregivers would go on to eventually save my life! They taught me so much more than I ever dreamed possible. Those wonderful people helped me to become a much better person who over 12 years later still tries to pass along that same kindness with info and support to others like yourself who are just starting out. If you want to help the people in your life who are trying to support you to learn more about OC, its fairly easy to indirectly get this done. "Accidentally" leaving printouts about OC laying somewhere they're visible, laying out in the open as if you had been reading it and just put it down. Then giving whoever you are trying to help educate opportunities to "find" the printouts and read thru them. Try going to the main OCF site and printing out several pages from the Understanding section (the Understanding link is below) or a few of the informative threads here on our public forum. By reading thru things they "accidentally" find laying around they'll learn more plus it avoids you needing to have any in-depth conversations explaining the numerous things you are facing.


You have our support from people who do care and want to see you succeed going thru everything as easily as possible. Any questions you have we will try our best to help you with them. Sometimes its nice to know you have the support of hundreds who have also been thru many of the exact same things. Its perfectly ok to lean on us and if you need to... vent, get all those frustrations out. Im glad to hear you will be talking with someone. Its a big step many hesitate to take, knowing you need this is the first step to helping yourself. Every one of your posts shows me you are so much more prepared than most patients. You are very fortunate to have the support of many who love you which is priceless!!! Knowing the people who dont quite understand your entire situation can be frustrating, but it sounds like they're trying to be supportive and positive. Im sure in their hearts they do mean well and want to help you. Since going out to a restaurant might not be something you find enjoyable after treatments are finished, maybe theres something else you could suggest to your sister in law? Most patients need more recovery time than they originally prepared to have. If you figure out something thats at least a month after your anticipated treatment end date, maybe theres a special event you could plan for? Its a very positive idea to have something to look forward to doing, hope you can figure out an alternative to eating out.

Best wishes with everything!!!

Main OCF site, Understanding section