Welcome to OCF, Tom! You have found a great resource with info and support to help get you thru everything you are currently facing with oral cancer (OC).
Before I answer your questions, please understand everyone is different and no two patients are ever the same. What one patient struggles with may not bother someone else who "on paper" appears to be very similar with the same diagnosis. Theres far too many variables even if patients have the exact same tumor location, type, height weight, age, live in the same area, do the same type of employment, have the same family history, same sex, heritage, number of children, medical history, blood type, vaccinations, ethnicity plus many, many more things that combine to make each person the unique individual they are. Everyone will respond to medications, treatments, procedures, etc in their own unique way.
In answering your questions, I will always be honest with you with my reply weather its positive or what you hoped to hear. Unfortunately treatments do NOT get easier as you go... its just the opposite, it gets more difficult. Radiation treatments get progressively harder the further along you go. Even when the treatments are completed, they continue working where many patients biggest struggles are at the end and first couple weeks after finishing rads.
The very best thing you can do is to focus on what is within your control avoiding the "what if" scenarios. Just like all patients are different, nobody can predict how a patient will respond to treatments. No one knows if one patient will struggle while someone who may or may not have a similar diagnosis seems to sail right thru. Radiation treatments do affect most patients ability to talk. Most patients towards the end of their rads/beginning of recovery have a very sore throat that can make talking or even whispering painful, this is almost always a temporary issue. A long lasting or permanent speech impediment does NOT happen to everyone!!! Unfortunately, after some very difficult surgeries and treatments, some patients have different problems that never go back to what they were before the cancer diagnosis. Many patients who complete their treatments and recovery go back to pick up their regular lives where they left off. Theres always an exception to every rule, sadly some patient do not go back to how they were before diagnosis and will have permanent issues they will need to work on to improve. This could be any number of things, not just a speech problem.
Reconstructive surgeries are NOT necessary for most OC patients who have a speech impediment! When talking about reconstructive surgery, it is normally done to "tweak" or correct something from another surgery, not to change someones speech. Theres thousands of people who live wonderful, fulfilling, full lives who have speech problems. Sometimes its all just how someone views something. To me, Id welcome going thru OC, treatments, recovery even if I ended up with a permanent speech problem as it certainly beats the alternative or not surviving OC! What one person sees as a handicap another sees it as something positive. After enduring the initial diagnosis, treatments (which can be barbaric!), a long hard recovery while learning to overcoming the side effects and other problems that go along with being a cancer patient, most have a much different view of things than when they first started out and were not aware of what they were facing. I guarantee next year this time you will be a much different person with a very different point of view on whats acceptable and what is considered debilitating.
Theres all kinds of specialists who should be available to most OC patients to help them manage the side and after effects of OC and its treatments. Speech pathologists can do miraculous things with patients who have a hard time enunciating words clearly. Nutritionists can help with ideas on how to take in enough calories to avoid weight loss and help yourself to feel as well as possible during treatments. Some patients need anxiety meds and/or talk with a therapist to help them to overcome the debilitating effects a cancer diagnosis brings as well as to avoid becoming depressed which is very common for OC patients.
Since you are already have begun your treatments, every single day you need to take in at the very minimum 2500 calories and 48-64 oz of water....
every single day (until you hit the one year post rads mark). This is the one biggest thing you must focus on, its in your control and will have a gigantic impact on how easily you go thru rads. Doctors prefer a zero weight loss for all patients going thru rads/chemo which can be very difficult when patients sense of taste and swallowing ability begin to be compromised. Make certain you discuss
everything with your doc right away! Even something is minor as taking a multivitamin could negatively impact your treatments or cause the chemo to be less effective. Any change in your hearing, kidneys no matter how minor need to be reported ASAP!!!... Permanent hearing and kidney issues can happen with cisplatin. The chemo can be switched to something else usually carboplatin if any issues occur. On chemo days (plus the day before and day after) patients need to drink extra water to flush the poison out of their system. These are the things patients should focus on, what they truly have control over. The "what if" thinking can be upsetting and is counterproductive, its out of the patients control to change or do anything about. All any of us can do is what we have control over ... managing pain and our intake while hopefully deciding to listen to all of the doctors recommendations.
With so many different insurance options available, many here can have all different kinds of coverage. Our members are from all over the world with many in countries where everyone has universal health coverage from birth. What one on the east coast has may not be offered on the west coast, same for states too! Im in PA, here even different counties have different options for health coverage. Some hospitals offer patient assistance programs but sometimes its not automatically offered, patients must ask.
Reading here and on the main OCF site will give you tons of info. Learning more about your illness and treatments will make for a strong advocate. The following link has the main OCF site. Wishing you all the very best with everything!!!
Main OCF Site, Understanding section