After lurking through this site for a couple of weeks I’ve finally decided to accept the fact that I have cancer and that I should join this forum and introduce myself.

I’m a 29 year old woman living in Sweden (so please excuse any misspellings or grammatical errors). A few months ago I noticed a white patch on my tongue and the biopsy results showed it indeed was stage 1 cancer. I’ve already had my first surgery (partial glossectomy) and everyone (doctors) says it went well but I don’t feel well. I feel horrible! I’m scared, confused and although I’m lucky enough to have friends and family that are doing absolutely everything to help me get through this I’ve never felt more alone.

Now I know I should be happy they found it at an early stage but I can’t shake the feeling of “what if”. What if it’s at a later stage than they originally thought? What if they decide to cut away even more of my tongue? What if it has spread? And the biggest “what if” of them all…what if it comes back?

Like I mentioned before, I’ve been lurking through this site for a while now and I don’t know how you all do it. How do you stay so positive through everything that’s happening? I’m keep trying but I just don’t know how anymore. It went well in the beginning but I feel myself getting weaker and weaker mentally and it terrifies me. Every time I talk to my doctors they tell me something new that makes me break down and I’m starting to think I’ll never hear good news from them again. It’s getting to a point I almost don’t even what to talk to any of them before the next surgery (neck dissection+another glossectomy).

Is there anyone out there who’s survived this horrible thing (I don’t even know what to call it. Although, “monster” comes to mind quite often) and is living a “normal” life now after?

Sorry for all the whining. Hopefully my next post will be more positive but right now I’m a dark and whiny place. Hope everyone understands.

Hi GG, I'm Daun. I live in Black Mountain NC (USA). I just joined today and you are the first post I've responded to.
I just felt compelled to remind you to be more compassionate with yourself. This is something I'm trying to do with myself too and It's not always easy.
I am a few steps behind you as I just had my tongue biopsy yesterday. Still dealing with this awful pain!
I have to wait two more weeks for my results but I saw myself in you. The fear, the self-judgement (for not being more positive), etc. We have to remind ourselves that we are going to feel a tremendous amount of varying feelings. We should expect them, we deserve them but we don't deserve to judge ourselves for having them on top of everything else we're going through.
Personally, I am dealing with guilt/shame for being a smoker. I am trying everything in my "tool box" to quit. Some days I do OK...others? not so much. So may I please suggest that at this point, try not to judge yourself for any of your feelings, not even how "positive" other's seem to be. You are your own soul, with your own experiences. Try to be your own best friend now. How would you talk to her? Would you accuse her of being weak? Of course you wouldn't. All we can do it TRY not to judge ourselves. I have to try every single day.
I wish you the fullest recovery.
Here's to being "Dark and Whiny" and STILL loving ourselves. :-)
Daun

Well, if the doctors and surgeons did their job properly, you don't have cancer anymore!

I had stage 3 cancer, with a fairly large tumor in my tongue. They performed a partial glossectomy, neck dissection and even zapped me with some radiation for good measure, because they weren't entirely happy with the margins of the surgery I guess. It was a pretty scary experience including a 10-ish hour surgery, 16 day hospital stay followed by four months off of work recovering physically and mentally from the surgery and radiation. However, my attitude was that these medical professionals know a lot more about the situation than I do, so I might as well trust their opinions and let them do their jobs & fix me up. That doesn't mean that I wasn't scared. I was, and it really sucked. Cancer took my mother, a close uncle, and now it was trying to take me too. I just realized that there wasn't much I could do about it directly, so I might as well try not to fret too much and let the professionals take care of me.

Since then, life has returned largely to normal. I do have some minor speech difficulties & have to be a bit more careful chewing food into smaller bites now since my tongue does not work as well as it did before this whole mess. I have some numbness in my neck where they yanked out some lymph nodes, a 7 cm by 6 cm elliptical scar on my wrist where they removed some tissue to reconstruct the tongue, a large rectangular scar on my thigh where they took more skin to fill in the hole in my wrist, and a tiny little black dot tattooed on my chest where they lined up the plastic mask that strapped me down to a table while radiating me. But I also have returned to competitive dragon boating & have travelled as far as the Philippines for a race. Heading to Korea for another one next week. I've paddled in a 28km outrigger canoe race in Hawaii, hiked the west coast trail on Vancouver Island, and feel as though I'm physically stronger than I had ever been in my life at this point.

What will I do if it comes back? I'll fight it again.

Cancer and the treatments have the potential to make you feel like a victim. (If you let it......) The damage it causes goes a lot deeper than the removed of or retention of ineffective organs and remaining soft tissue. The psychological issues aren't really addressed as adequately as the physical issues are. SO - It's up to you to find the resolve to go on with your fight to become cancer free and find whatever your new normal is. (Your new normal WILL be different, but again, hopefully, you have a lifetime to adjust!)

Call it what you want Monster works well. I've called it much worse in darker more desperate times. I think that the best thing would be to eventually call yourself a survivor and let the experience add to your strength of character.

Family is great and having a support system in place makes your final goals more attainable. But, unfortunately, family is not the best place to express your fears and offer useable advice. (At least my family.....)

Good Luck with the next stage of your fight.

Focus on one thing at a time and eventually you will come out the other end.

Try not to let this beat you psychologically.

Please consider following up with a professional

To answer you question about living life after cancer - Life is what you make of it. This site is full of survivors that have full and fulfilling lives. (I'm a civil engineer, married, work 50 hours a week, have two kids, both conceived after completing my first surgeries and subsequent treatments that went with my initial oral cancer diagnosis, I've coached youth sports, skied, hiked, mountain biked and led a wonderful active 17 years between my initial and second diagnosis. Now I still work, and independently coach my daughter, but have a reduced energy level and also have issues with speech and swallowing. I'm still dad to my kids, Boss to my staff at work. Friend to all that are worthwhile....)

Really - Don't let this beat you

Welcome to OCF, GG! Im sorry you have a need for our group but I know we will be able to help you. We have all felt hopeless about being a cancer patient at some point in our journey. Take it day by day and try not to get too far ahead of yourself. Read here and learn about your illness so you can be a strong advocate for yourself. We have all been where you are and we have learned to pick ourselves up and continue.

Do your best to avoid the "what if" thinking. It seems to only cause you more anxiety and worry. Staying super busy with a new hobby, reading a long detailed book or anything that requires lots of concentration will help to keep you focused on other more positive things. If you find yourself 'going there' and you cant shake that way of thinking, set a limit to say 5 minutes then you need to physically get up and "change the channel". Go outside or go do something productive and force yourself from veering off the "what if" way of thinking. I used to clean my closets... all of them and by the time rads began I had the cleanest and best organized closets ever! Another way to take your mind off the negativity is to help others. Volunteer helping those less fortunate or the elderly or even children. By helping those who are worse off it will help you to feel more positive about your own situation.

Hang in there! You're in the right place, we get you!!!

Hi GG,

I don't frequent this site often anymore; however, just happened to see your post and wanted to give you some hope! I was diagnosed at stage 4 (at the age of 23), had a little over half of my tongue removed/reconstructed, chemo + rads, with somewhat significant speech impediment. While treatment was very difficult and took me a while to return to a new normal, I feel I have since returned to a normal, happy life. I am now 5 and a half years out with no recurrences, married, great job, and 33 weeks pregnant with a healthy baby boy on the way . I went to speech therapy for a few months after treatment, and have gotten my speech to a point where most people don't notice I have any issues (or at least that's what I tell myself). Many people in my life now have no idea what I went through, which makes me feel even more normal. I'm not going to lie there are still times where I feel alienated and very fearful of recurrence; however, those feelings definitely diminish over time. I remember a time where I was probably thinking about my cancer literally every minute of the day, and now some days I don't even think about it at all. Just hang in there, it does get better!
One thing I wanted to mention is that I too went through that period where I found myself breaking down in tears when someone even asked how I was doing, and getting on antidepressants really helped level me out. I only stayed on them for a few months (and had not taken them before or since), but I would talk to your doctor about it.
Hope my story helps you - good luck!

Hello again!

Reading your responses has been a great help to me these past couple of weeks. I wish there wasn’t a need for this forum but now that there is I’m happy I found my way here. I still cry a lot and I’m still scared but it’s getting better. My friends have helped me get in contact with a guy that went through (almost) the same thing a few years ago and talking to him has also helped me a lot.

Right now I’m recovering from the neck dissection and second partial glossectomy and soon I’ll start 6 weeks of radiation. Hopefully I’ll get through everything with enough energy so I can start getting my life back together.

I’m trying not to let this beat me and I can control most of the “what ifs” but I must admit the “what if it comes back” is a pretty hard one to ignore. But I’m trying my best. Trying to take your advice and take everything one day at a time. Keeping busy with the little energy I have and reading your stories about how you’re living fulfilling lives after all that you’ve been through keeps me going and gives me hope.

Hopefully, in a few years, I'll get to a point were I'm strong and stable enough to help someone else in this forum just like you all have helped me.

Daun: I really hope your biopsy results show absolutely no sign of cancer and that you never have to log on to this forum again. I completely understand what you mean about dealing with the guilt of being a smoker. I was a smoker myself and I keep having flashbacks of moments I’ve smoked and I just feel so stupid. Now, the doctors say it probably wasn’t my smoking habits that got me into this mess (I have a skin condition that increases the risk of getting oral cancer) but I’m sure all those cigarettes didn’t help. Anyway, keep working hard on quitting. My dad finally quit after 10 tries and 20 years. If he can do it, so can you. Just don’t give up.

GG, the very best thing you can do is to focus on what is within your control. Focus on your intake which is what plays the biggest factor in how you will do with your treatments. Worrying about the "what ifs" will not ever do anything beneficial for anyone. All it does is cause unneeded stress and make this whole thing more difficult. By putting all that energy into focusing on your intake, it will help make it easier for you to get thru this. For most of us, rads were not easy at all and it took everything we had to push ourselves to take in what we could. I didnt do so well and suffered so much more than if I had met my daily minimum intake numbers. Every single day from right now thru the first year post rads (at the very least) you should take in a minimum of 2500 calories and 48-64 oz of water. If you can push yourself to take in a little more like 3000 calories every day, it will help make it easier on you. You are ahead of the game by having us in your corner cheering you on. We will do our best to help you with all kinds of tips and ways to make this battle as easy as possible. Stick with us and you will be ok

Best wishes with your continued recovery from surgery.

Thank you for the tip ChristineB! I haven’t been able to eat well since the first surgery and my appetite is completely gone. Right now I think I eat a maximum of 800-900 calories per day but I’ll start counting my calorie intake from today to make sure I don’t lose even more weight

GG87 I put many posts on here about my husband's struggle to eat when he had zero appetite. The struggle is real. I cannot stress enough the importance of what Christine says about your intake. We are still counting calories almost 5 months post treatment. As a caregiver you can see how adequate hydration and nutrition improve the patient's overall health. My husband helped me understand all the ways that as the patient it is a challenge. However, in the end you just have to make it happen. As Christine makes very clear the consequences of not doing it can be long-term and serious. It is one of the few things you can control so focus on it for that reason alone. Be strong and summon all the courage you have! It is a hard road but you can do it. I had days I did not know if my husband would make it through the eating struggle but he has his PEG tube out and he is working and traveling and enjoying his life.