Hello to you all. First time on here. My best friend, 43 yr.old female, was diagnosed with T3 Squamous tonsil cancer. Right tonsil and tumor in neck.3 radiation treatments,first chemo done. Anxiety extreme! She's started on meds for that. I would greatly appreciate any/all advice on what to do, and what to expect for future reference. Thank you!
Hi Anita and welcome to OCF. Sorry to meet you here, but glad you found us.
I take it your friend is 3 rads down, 32 to go? 35 is fairly standard. That number is pretty daunting, but she does have the luxury of seeing medical people every day, which is something you don't get with chemo and surgery. And she will need to see people every day. Symptoms can fluctuate wildly, and while she may have been told about something in her initially briefings, the onset of some side effects can come as a surprise. Any change in symptoms should be discussed with the nurses, they are very experienced at helping to minimise the side effects.
The chemo I'm guessing is Cisplatin, its fairly standard. Everyone is different, but for most people Cisplatin will redefine words like "nausea". The meds you refer to are a cocktail of anti-nausea drugs which hopefully will let her keep food down and not have stomach acid rushing past a burnt throat. The cocktail of meds can be difficult to get right for the individual, so there may be some trial and error on what works best for her.
Its important she keeps the machine working. Hydration, nutrition, toileting and movement. The body is needs a lot of fluids and calories (2500 daily minimum) to keep up the fight. This is at a time when she is struggling with nausea, and down the track the effects of the radiation make swallowing food difficult. She should be managing pain relief, the last thing she wants to be doing is "toughing it out". Follow the medical advice and keep on top of the pain relief before it becomes a problem and hinders the healing process. There are many threads and resources covering nearly everything your friend will go through, search the OCF forums with key words and you can usually find something. If you can't, by all means post a question.
It sounds like a cliche but a positive attitude makes an enormous difference. I always say "keep the chin up because its very contagious when it drops".
Lastly be kind to yourself. Lying awake stressing about her and wearing yourself out won't do her any good. The primary carer (if its not you) needs support, and its not always obvious what they need. They don't always know what they need. With us our daughter came over and the laundry was magically done. The dog was walked, the car was washed. She was just there. Took a load off my wife at a very difficult time.
I hope that helps a little. If you have any questions or want to share an update we'd love to help where we can.
Welcome to OCF! Im glad you have found our site to help get you and your friend thru the rough weeks ahead. Focus on what is within your control... her intake. This is the most important part of the whole process. Every single day she needs to take in at least 2500 calories and 48-64 oz of water. This sounds like alot but its the bare minimums, if she can take in more that will only help get her thru it easier. Ask the doc for an open prescription to get extra hydration from the chemo lab a few times a week. This will help her to feel a little better when it becomes difficult for her to eat and drink.
Start a list of friends and relatives who have offered their assistance. The time will come when she needs help. Nobody gets thru this alone.
On our forum and the main OCF pages, read and educate yourself. Its important to understand as much as you can about this horrible disease, treatments and side effects so you can be a good patient advocate for your friend. She is very lucky to have you! Dont forget to be kind to yourself too. Its not easy for anyone involved, even caregivers sometimes need anxiety meds to help get them past the worst of it.
Stick with us and we will help. We are here for you both.
Best wishes!
Thank you so much! I have learned alot already
Hi Anita: While I'm sure you are helping a lot with your friend's journey through oral cancer, nothing will be better than her joining the forum herself. Her reading these posts and the educational information on the OCF website (instead of getting it all second hand from you) is even more valuable; it will bring up so many questions she didn't even think to ask.
Now, if she can't (or won't) for whatever reason, then of course we are all here to help you in any way we can.
All of us have already been through most everything she will face during treatment and after. For some, treatment is horrible, painful, every bad adjective you can think of. For others, it's not so bad (my treatment wasn't bad at all). Where will your friend fit on this spectrum, no one can guess at this point. But, where ever she falls in the spectrum, good nutrition and hydration will make it way better than it will be without. When they say, 2500 calories per day, that's a minimum, more is better. Tell her to try to gain weight through eating. If she gains even one pound she will be the first I ever heard of gaining any weight (I lost 42 pounds during treatment, and I ate most everything I was supposed too).
Okay, enough rambling, lean on us when you need help, we are here for both of you.
Tony