I am feeling overwhelmed today. Tomorrow will be 3 weeks from surgery and I'm wondering when I will start to feel like myself again. My ear/face/neck feels frozen/numb still. My hand, in particular my thumb, does not have full range of motion due to the skin graft operation and impact on nerve. Physio says it will get better. The skin graft looks much better but there sure seems to be a long way to go for healing. My mouth is dry. I do have all sorts of mouth care products. My mouth doesn't open all the way and droops on the left side too. I'm tired most of the time. I'm just feeling a bit down all day today. Radiation sounds pretty scary. Going to have radiation mask made next Friday. My radiation oncologist said I might need chemo too but now I haven't heard back for an appt with a medical oncologist to discuss that possibility. I'm wondering though how they know the cancer hasn't spread anywhere else. It jumped from my mouth to 3 lymph nodes, maybe it also jumped somewhere else. I said to my radiation oncologist that I was off work 6 weeks for surgery and presumably I'd be off another 6 weeks for radiation. She said no I'd be off 6 months, and it would be life altering. I'm also a breast cancer survivor, 1997 when I was 33 (lumpectomy, chemo and rads), and a recurrence last year (bilateral mastectomy, as I have brca2 gene). There's a ton of cancer in my family, including breast cancer and oral cancer. Any input on recovery time, radiation side effects, time off work, chemo or no chemo, or threads that address these issues would be appreciated.

Thank you

Mary

Welcome to OCF, Mary! Im sorry to read about everything you are going thru. Bouncing back after a major surgery is never easy. I completely understand everything you mentioned and how frustrating it can be. Ive been thru surgeries too and know how frustrating it is when going thru a recovery that isnt even close to what was expected. I dont always make the best patient, Im a very impatient patient!

Being a patient in recovery phase isnt easy! I feel so bad that you are not only having physical issues but also worried about your rate of recovery. All patients can never get well as quickly as they think they should. Usually its 6 weeks between when a patient has surgery and they begin their radiation treatments. Unfortunately that does not mean in 6 weeks the patient is fully recovered. Especially when talking about swelling which tends to hang around for a very long time. Most patients will say they feel much better around 5/6 weeks after surgery only to start rads soon and begin to feel lousy again. Always remember, every single person is an individual and will respond in their own unique ways which may or may not be similar to another patient who has a similar history. Comparing patients is not ever an equal comparison. Take 10 people who on paper appear identical... same age, sex, weight, tumor size, tumor location, stage, node involved, live in the same general area, same habits (smoking or not, drinking or not), etc. On paper you would think all of these people would pretty much go thru the same things with treatments, recovery, etc. But they dont! Every single one will report different side effects of varying degrees, some struggle from day 1 while a few lucky ones will bounce right back without any major issues. The point Im trying to make is comparing oral cancer (OC) patients doesnt work! Every one is different and will respond in their own unique way which is why I said most patients feel much better after about 5 weeks of recovery after surgery. A complete recovery after surgery takes a full year, sometimes more (too many variables). When talking about cancer, doctors con not wait a year before beginning the next form of treatments, rads.

Heres a link that will help you learn more about OC and treatments. Its from the main OCF site that has page after page of helpful, important info. You may also benefit from reading posts of others who have had similar surgery, just keep in mind everyones different and will vary. You are among friends here. We understand what you're going thru and wish you only the best with everything. I hope the link below helps you. Best wishes with your continued recovery!

Main OCF Site... Understanding


PS... Thank you very much for taking the time to add your signature already. Great job!!!

Thank you for the information, I will check the link to learn more. I probably should have waited until I wasn't so down to post a first message, but oh well I joined the Forum now and will be glad to find some information.

Thanks

Mary

I took off very little time after radiation (maybe 4 weeks max with travel in that time) and very much regret it. It is important to recover from the radiation fatigue. I appreciate that your doctor said 6 months.

Mary, its ok!!! No regrets or apologies necessary. We all understand what its like to go thru the horrible side effects you are dealing with. All those things can put patients under so much more unnecessary stress which is NOT healthy for patients. It only makes everything harder. We all have times when we feel overwhelmed. One thing that greatly helps make most people feel better is to have a safe place to talk about things and vent our frustrations to. One of the very best things about the OCF forum is that all patients are anonymous. We value our members privacy and only ask the most basic info when setting up a new account. We even keep our members email addresses private so no member can be contacted by another. Its completely up to the member how much personal info they share or keep to themselves. Its completely normal to sometimes get upset and become concerned when facing the unknown with serious medical issues. Many patients will get depressed, others become withdrawn, many also benefit from temporarily taking anxiety meds. Its just another tool to get them thru the day, week, etc. Bottom line is we understand what you're going thru and its ok. If you are feeling upset or weak at times, we understand and its ok to lean on us. You're in the very best place to get help, we try as much as possible to help everyone. While you are here, feel free to vent, rant, cry, etc. After you get everything off your chest, you will feel better.

[quote=Stef H]I took off very little time after radiation (maybe 4 weeks max with travel in that time) and very much regret it. It is important to recover from the radiation fatigue. I appreciate that your doctor said 6 months. [/quote]
Thank you for that input Stef. It seems like such a long time to be off for 6 weeks treatment! I can only read so much about side effects because it's very scary to me, so maybe when I can process all of that it will make more sense too.

Mary

[quote=ChristineB] ... its ok to lean on us.[/quote]
Thank you 😃

If you have questions, feel free to ask. We can tell you our experiences and hopefully help you to avoid the pitfalls we had. One thing you can start doing now to be proactive is to start eating all your favorite foods, deserts too. I know it isnt easy eating after such a major surgery. Mouth surgery can be very painful and have a huge impact on a patients ability to eat. Most patients dont have much of an appetite after their cancer diagnosis and surgeries. Do the best you can to take in as much as possible. Gaining a few pounds is ok and encouraged especially if you are on the average or slim side.

Anyone who offers their assistance to you, write down their name and contact info and tell them you will let them know how they can help when the time comes. Ive found most people really do want to help but they just dont know what they can do. Ive always been overly independent so it was a very hard thing when I had to ask for help. I was pleasantly surprised by how many people from my work who stepped up and went above and beyond to help me. I also was very disappointed with a few people I had considered to be very close when they ran for the hills after I told them I was sick. I felt like they must have considered me to be contagious the way they disappeared from my life for months. Once I was better they went back to treating me like they always had without ever saying a word as to why they avoided me. Dont be surprised if you have similar things happen in your circle of friends and relatives.

By reading and learning more about your cancer it will help to make you a strong advocate for yourself. I found reading things on the main OCF site to be very helpful. Reading what others have suffered thru can make patients feel overwhelmed. Take it step by step and day by day.

Hope today is a good one for you and you are feeling a little better, and tomorrow will be even better.

Thanks Christine. Unfortunately I'm on puréed foods still so I can't eat my favorites. I lost about 20 lbs in the 4 weeks before surgery and then 11 days in hospital (not intentionally) which at this point is ok since I could lose another 20. However, I'm trying very hard not to lose any more weight. I do have a question about mouth care, so I'm going to try to figure out where to post that now.

Thanks.

Mary

Has your doctor ordered a PET scan? If not, insist on it. My doctor ordered one before I had surgery and it was clear, so I had some piece of mind. Radiation is scary but you will make it. If you haven't started yet and if your mouth is feeling better, start loading up on calories. I am two weeks post radiation and am still losing weight. My mouth and throat are feeling somewhat better but nothing tastes good and I have little desire to eat or drink anything. I know I need to do better but it is hard. I hope you have help. As treatment progresses you may be on more pain meds and will need help getting to your treatments every day. Hang tough, you will make it through this.

Where are you located, DeniseG? I'm in Ontario, Canada, and my RO tells me neither my oral cancer now or my previous breast cancers make me 'eligible' for a PET scan.

I just found out on Friday though that I will be having chemo radiation, not just radiation. I have no other info on that though until I get an appointment with a MO.