Head & Neck Cancer Support Group
Kirklin Clinic – Birmingham, AL
distributed by American Cancer Society, edited by Pat Sanders
Once upon a time in the WebWhispers online world…… there were two totally different women, who lived in opposite parts of the country, were of different ages, experience, education, and appearance, but the one had just had an extensive laryngectomy a few weeks before, complicated by other problems, and the other needed information and assurance because she was to have her laryngectomy in two weeks. These are messages written from the first woman to the second as their friendship grew during those crucial two weeks before the second one had surgery…………
I do understand the nervousness and fear leading up to the surgery. Let me just assure you that the anticipation is much worse than the reality in most respects. As for paying the supreme sacrifice for a "nasty" habit . . . I'm one of those rare folks who is not a smoker and has never been one, but still managed to get this form of cancer. Personally, though, I don't think it makes any difference whether you smoked or not, cancer is equally awful and equally scary for everyone. So now it's just trying to find a way to deal with it all, and move on with life. As for paying the price, I was really feeling like life was unfair there for a while, and was feeling like my voice and my normality were being stolen from me. What I finally realized, though, is that they did not take healthy tissue from me ... they took out of my body diseased parts that would have killed me . . . and they reconstructed me in a way that will let me live a while longer and enjoy the miracle of every day things. So instead of feeling angry or bitter about this, I'm grateful to the doctors and surgeons for applying their skill to give me life. As my grandmother used to say when I was little . . .”bitter” or “better”, you choose what life makes you . . . I choose “better”! -- D.
How do I look now? . . . Well, that's a real tough question to answer because it touches on the most emotional part of this whole process. I need to reiterate that my surgery is a lot more extensive that yours is going to be, and so what I look like is for the most part not going to apply to you. I am struggling with the whole alteration of appearance right now, because there are so many things that are different - but am trying to remember that each change was necessary to give me the best shot at beating cancer and living disease free for a long time after this. There were times before surgery when I thought about how radically this was going to alter body image that I nearly decided not to do it - just live as long as I could with everything intact, and let that be enough. But the pleadings of friends and family prevailed, and I agreed to the surgery. I'll be honest with you - there are moments when I see myself in the mirror or get frustrated by the changes and I wonder if it was worth it - but I expect those feelings to be temporary - and I am working through them. Your surgery will be no where close to this extensive, and so I don't expect you to have the same extent of self-image issues afterwards. There will be some, but you'll adjust. And the thing is, we have to learn to see these changes and these scars as evidence of the battle with cancer and that we survived, as well as reminders that we should be grateful to the doctors who gave us a chance. It would be a lot easier on them to just say there's nothing they can do, make you as comfortable as they can, and let you die. So understand that while I'm not totally there yet, I'm learning to be grateful for the way I look today, as it is the look of LIFE.
Just know that no matter what does happen, you can do this . . . you will survive . . . and you'll proudly carry the scars of victory for a lifetime. There's a commercial the Marines have on TV about the change that happens as ordinary men go through Marine training . . . where they are changed by the experience . . . they talk about the change being forever . . . I like to think of this experience for us in the same way . . . and at the end of it, we should feel the same pride and accomplishment for making the difficult transition as the Marines do . . . we are changed forever . . . and we are few in number . . . let us also be proud of what we are becoming. Let us be . . . the few, the proud, the larys! My thoughts and prayers are with you as you prepare for the journey . . . let me know if you have more questions, or are just curious, or just need to talk about your emotions with someone who understands the turmoil. -- D.
You say your life is about to change forever. That's true. There's no way of getting around the fact that life is going to change, and you're going to have to learn different ways of doing many things . . . but change can be good, and it will give you something that will occupy your mind and your time so that you do not live in fear of the cancer all the time. A year after laryngectomy, I think we'll look back and wonder what the big deal was - why we worried so much about it - because the truth is, much more of life will still be the same than will be different. The dogs still have to be walked and fed . . . meals still have to be cooked, the house still has to be cleaned, dishes still have to be done, laundry still has to be folded, shopping still has to be done. We'll find that the rhythm of life goes on, and we'll catch right back up to it eventually. Take what healing time you need . . . but don't EVER feel sorry for yourself in this process. It's ok to be frustrated . . . but self-pity is never ok. We're not disabled . . . we're different .. . and we need to celebrate the difference because it is what lets us be cancer free. Go into this with a good attitude . . .with gratefulness that medicine has options for us and we will not die from this (at least the chance is small). Go into it seeing it as a good thing. Go into it expecting that you can make the adjustments with some work . . . and, in my experience at least, you get just about what you expect. Those that expect a hard time, get it . . those that expect it is something they can handle, handle it. I have faith in you that you can handle this - and that you will adjust quickly. You have had experience with major change . . you'll adjust to this, too. And who knows - you might be one of the lucky ones that comes out of surgery with the TEP puncture already done . ..and in a few of weeks you'll get the prosthesis and start talking up a blue streak! --D.
You keep saying that your life is going to change forever on Tuesday - it made me think of how i have finally resolved that issue. I'm giving you the pep talk I give myself every single day . . . I'm trying to let these thoughts and ideas sink in and become a part of me. I'm not lecturing you - nor am I minimizing what you are going to go through. It is very difficult, and very frustrating, and takes away an essential part of who you are. But there is much that remains . . . so take the pep talk for what it is - my own self talk that I use to help me get through this . . . and please know that while I hate this is happening to you, it has helped me enormously to have someone to talk to - it will help you too. Thankfully, our fingers still work after this surgery. . . so let's make the most of that and keep each other company as we adjust. The pep talk I give myself is below . . . hope it helps . . .
When you think about how life has changed, and set the marker in the ground for the time it did, be sure you mark the right spot. It didn't happen with the surgery. Your life changed forever when you got cancer. The thing is, you didn't know it had changed at first, but the truth is, cancer is what changed things, and what made all the other changes necessary to deal with it. The things you are experiencing are RESPONSES - not causes. Be grateful that the doctors have given you a chance to be free of the cancer, for the cancer can kill you. The surgery and radiation will not. There is a cost for getting rid of this deadly disease - the scars, both physical and emotional are permanent, as are the changes in your body - but the good news is that because of these changes, life goes on. You did not have the option of staying the same - you either had surgery and radiation that changed you in order to live, or the cancer would have continued to change you in some pretty horrible ways until you died. Learn to wear the changes as a badge of honor that declares to all you are a war hero - you fought the battle with cancer and won. Others will see the scars too - some of them will bear scars of their own from the way their life changes because yours has. You are not an island. These changes affect many more people than you. It affects everyone around you, and everyone with whom you interact. Be sure you are there for them too. It's too easy to get focused just on yourself, but those people still need you. Some will be compassionate and walk beside you on this journey sharing the highs and lows and the plain ordinary days, just as they always have. Hang on to those people with both hands, for they understand your worth and value, and are as grateful as you are for life in spite of what it has cost all of you. Some will be afraid. In part they are afraid of losing you. In part they are afraid of how they will respond to the changes. In part they are afraid because they know it could be them just as easily as it was you. Do your best each day to reassure them with your positive attitude, and by letting them know that you are ok with the changes, and proud of the scars, and very grateful for a second chance at life. When there is an opportunity, help them understand the changes, and about how you can work together to overcome the changes. Teaching and reassuring others will help you feel in control of a few things, and will give you an important role to play. Take full advantage of that. There are not many things you can control right now. Remember, knowledge conquers fear. Some of those people who are afraid right now will become the compassionate friends that walk beside you and share this journey when they begin to understand and relax about how you are handling it, and understand that you are still there for them.
Please understand I'm not perfect at this . . but it's the pep-talk I give myself as many times a day as I need to in order make it through this. I will not lie to you and tell you it is easy. There's not very much easy about it. But just know that at all times, you have a friend that understands, and there is always an open door to discuss things, or to vent, or to share good news, or to just to share a laugh or two. I'll look forward to hearing that all went well on Tuesday. --D.
You challenged me to make a deal with you that neither of us will ever give up. I agree, but with one modification . . . we not only want to hang in there - we want to seize the second chance at life and live it for all it is worth. It's a new adventure, and like travel, or a new job, there are parts that are scary and frustrating, but it's up to us to be passionate about it, and to enjoy the adventure as much as humanly possible. One of the great things about the way God made us is that he gave us free will - of body and mind - and so we can choose where and how we focus. We can remember the best about things, or the worst about things. I've spent my life being a positive, upbeat, humor-finding, life-loving person, and there is nothing that the surgeons did in the operation that removed my capacity for that. Am I having a hard time with the transition? Absolutely - its one of the greatest challenges I've had in my life, and right now there seems to be no end to the frustrations and the challenges. Please know that I do understand your nervousness and how scared you are right now, and I'm sending up lots of prayers for you today - for a peaceful spirit, for the surgeon's skill and judgment, for rapid healing and adjustment, and that the cancer will be contained and they will get it all. If there is anything else you want me to pray for, I'd be more than happy to do that as well. I'll look forward to hearing from your family when the surgery is over - and will look forward even more to the time when you are home and feel up to letting me know yourself how things are going. God speed, my friend . . .you're gonna do just fine! --D.
When I was discussing my upcoming surgery last November with my wife (a Thai National) and my two Daughters (half Thai, half Redneck Texan), I told them that I would not be able to speak for some time after the surgery, and I explained the whole deal to all three of them. Afterwards we sat around very quietly. Finally, our youngest daughter, who is 26, said, “Well, not being able to speak isn't such a big deal, All you ever say is No!” That ended the silence.
Jim Stringer <firstname.lastname@example.org>
Knowing We Are Different – Assuming We Are The Same by Pat Sanders
Realistic expectations are hard to come by. When you ask others how long it will take to learn to talk again, one lary will tell you, “I could speak a few clear words the first day I got my AL.” The next one says, “I worked like a dog and never could get the hang of it.” Another says, “I had a hard time learning but it’s second nature now.” or “I didn’t like the sound so I never used it.”
So when you get your new AL, what are your expectations? If you only talked to one person, you would expect your experience to be the same as theirs, yet look how different the above statements are. You may be pleasantly surprised or you may be disappointed depending on your expectations. If you can’t seem to speak clearly at first, you assume you are doing something wrong, when it might be that your surgery was different, or you have more swelling, so your mouth and tongue do not move the way they will later. Just because it takes you longer to learn to form words does not mean that you won’t talk clearly and well later.
Recently on WebWhispers, a member wrote in asking about a TEP puncture. The answers were varied and plentiful telling her how well or poorly they talked, how soon, how clearly, and the messages even contained recommendations of which prostheses to use. Comments indicated it was a snap to have it done as same day surgery and told of the prosthesis being installed in the puncture a few days later. Many said how happy they were with their choice. After the puncture, the member who asked the original question asked another. She wanted to know why no one mentioned the pain with getting this thing in? Perhaps because many did not have pain. Others did, but didn’t mention it. Expectations of ease and comfort made the pain startling and worse.
We say it all the time, the phrase, “We are all different”, but when we start to answer a question for a new person, we fall back on what we know from our own experience and assume that it will be exactly the same for them because we don’t know any other way it can be.
Let these new people know what your experience was, but also tell them that others have had different experiences and there is no way to tell for sure what their experience will be. You can qualify your answers to keep their expectations from being set that they will or will not be able to do something in the same time period you experienced. Perhaps you can spare them some disappointments.