What does it take before people see you as a survivor and not a cancer patient? Steve is now 17 months cancer free and still people seem to look at him like he has cancer. He HAD cancer. How can you make people understand this. We are finally at a point in our life where we are starting to look to the future a little bit. We want to go home finally and I'd give anything in the world to take Steve back to the place where he smiles a smile I haven't seen in a long time. Everything we seem to plan lately all I ever hear is negative talk about Steve being sick. Argh I just feel like screaming sometimes. What does it take to get people to understand the word SURVIVOR. Yes the cancer could come back but maybe it won't. What are we meant to do? Stop our life and sit here and wait for it? I don't think so.

Some people seem to think it's only a matter of time until the cancer comes back and takes him. How can you think like that. People beat cancer all of the time and I for one, will never give up the possibility of it being gone for good. How do you educate people so they know that having cancer or having had cancer does not mean the end. Negative comments are not what we need. Positive support for our dreams are very much welcome. All I ever seem to hear lately is "Steve can't do that". Steve has earnt the right to do anything he wants to do and he has earnt the right to live his life in the way that makes him the happiest. And so have I.

Sorry but need to vent and I know this place is the only place in the world where people I care about will ever understand. Do other people have these issues or is it just me? Do people ever stop looking at you as a cancer patient and finally see what a survivor you are? I'm just thankful that this negative stuff is never said in front of Steve and only to me but it's so very hard to take sometimes. How do you nicely (without upsetting anyone) let people know that they are not helping the situation?

I hear you, Wendy! The tough days never end. The treatment of head and neck cancers has come a very long way in a comparatively short period of time. Most people of a certain age have known someone who could not beat a diagnosis of throat cancer. Many of my older relatives and older friends were horror stricken when I told them about Earl's cancer. I was terrified too but I had to appear confident in the treatment options. A friendly fellow at the dog park who is in his late 80's told me that he had a friend named Max who died from the disease. It could not be beaten in those days. My friend's grandmother also passed away in the 1960's from this disease.

Most people carry around terrifying thoughts about cancer. When someone they know receives a diagnosis of cancer then the fear starts for them. They do not seem to realize that their pointed questions are so upsetting. Venting in this forum is the best place because we have all been there. The people who come to the forum are looking for help in so many ways. Hearing us talk about these issues can only help us as well as those who are in the initial phases of the diagnosis.

When people ask those questions I tell them that incredible discoveries have brought us to the present day success rate. As for those who ask about the disease coming back, well, I become rather flippant and reply in very many different ways depending on the personality of the inquisitor. Sometimes I say things like we could be struck by a meteor this minute or a terrorist could be planning to blow up our workplace tomorrow. It seems to end the conversation very quickly. Other times, I will tell them the truth, that we do not know and it is something that we have to live with. It all depends on the person who asks the question.

Earl is doing fine these days. He checks in with his doctor every four months and it has been suggested that he take a synthetic thyroid medication. He tried it for a bit but the side-effects were terrible. He became very panicky and had a racing heart. He is waiting for the doctor to come up with another plan.

Connie

Hi Wendy

I can't imagine you screaming - your posts are always so upbeat and positive. Glad to hear you are human! I am replying because you said one thing that I love and I think it is the answer to everyone who comes at you with any negativity about the future.

[quote] Steve has earnt the right to do anything he wants to do and he has earnt the right to live his life in the way that makes him the happiest. And so have I[/quote]

I wish I was able to stay as calm as you do. I don't do "nice" anymore, I just tell the well meaning person that their comment/advice is not useful (when I am in good mood) or uninformed (when I am casting about to annihilate someone else's day).

Luckily for the members of the human race who stray into my territory, my bad days are becoming less and less so there are not as many maimed bodies piled up around the front door as there used to be.

Yes, what a question you bring to the table Wendy! I get that at work all the time. Executives will come by to visit and always ask "How are you doing/coping (Etc) these days?" I don't dare make comments to ANYONE about fatigue or overdoing it during long stretches, however I can easily outpace those that are half my age, LOL. It's just a perception that we all seem to have a hard time breaking and have to learn to deal with. Trust me, I am very grateful that people care and I know that everyone here understand what I'm saying however how can we properly communicate and convince others when we do get better, we continue to improve, and that we are in fact "Survivors!" I guess it's just communicate, communicate, communicate, and keep smiling (We have a lot to smile about).
Steve

Wendy

Sounds like one of the posts in our "Don't you just hate it" thread. You are right that the OCF forum members understand your frustration since those reactions are unfortunately not uncommon. The most important thing is that you and Steve both realize that you determine what you can and can't do now.

A lot of how people react depends on appearances. I grew a handlebar mustache after TX because if I keep my mouth shut, hide my feeding tube under the shirt and smile, I look really healthy. As time goes by, this problem should get better,
I'm hoping that as more prominent people like MD get this cancer and then come back to live an active life, we won't have to deal with it as much.

You have a great attitude. finally, as my cybername here implies, I've given myself until 2017 to be "charming", so I don't worry about "upsetting" rude people. I prefer to think of it as continuing adult education when I ask "so, I can count on you to come to my funeral then? Should we pencil it in now on your calendar/blackberry?
Charm

Wendy, I understand exactly what you are talking about. I get the same thing all the time. Oh, would YOU be able to do that? or Is that going to be too much for YOU? Bunch of crap!!!! I can set my own limitations. I listen to my doctors and still will make my own decisions if I can do something or not. Like swimming, not supposed to do it with a feeding tube. Last summer, I went to a water park and went on water slides just like I would have before I got sick. Sure I got tired quicker than before but for a few hours I forgot I ever had cancer. Dont let others dictate what he can or cant do. Tell them he is an adult and will decide for himself. Its not being rude, THEY are trying to be polite but it really is rude to mentions someones past illnesses. Too bad people cant think before they speak.

I wish you both many happy and healthy years doing everything and going everywhere you both want.

Charm, thanks for the laugh! I admit that I am not charming alot too. My patience level has dropped dramatically. Some days are better than others. I will admit that a lot of people LOOK at me but don't say anything. My friends and family have all been very supportive and amazed at well I have done through all this. It has helped that I have a WONDERFUL friend who has gone through cancer herself and knows a lot of the things I have gone through. Hers was different and in a different place but there are a lot of the same feelings.

Christine, you keep on swimming. I flat out asked about that and was told there is nothing wrong with swimming. The only thing is that some discharge will happen but it is safe to do in a pool. It was even ok to go in a hot tub and I have done that a couple times. It felt really good. Swimming is a great way to exercise when you can't do much. Some of the community pools are warmer and I find a little more comfortable to swim in than a cold pool.

There have been times where I wish people would ask me what happened to me and lately some people have as I drink with a syringe so I look different waling around with a syringe. If people would ask it would being a whole lot more visibility to this disease. My mom and I were on a place the the people sitting across the isle from us were a smoker and a chewer. My mom really wanted to say something but was not able to. I guess she thought that it would be intruding.

I have a three year old nephew and he had his third birthday this weekend. All his little friends were there and I got a lot of looks at first but after that they just went on and did their thing. My nephew knows that I am a different but he rolls with it and loves me just the same. I think sometimes acting like a child is not always a bad thing.

Sorry if I rambled to much. I guess it stuck me! I hope and will pray that it gets better for you and I agree that both you and your husband deserve the right to do whatever you want!!! And if anyone says anything tell them it's your life and you will live it to the fullest. If he gets tired and has to spend a day or two recovering it OK. You only get one life and if this thing has probably taught a lot of us that life is short and you only get one. Do things while you can!

Thankyou so much everyone. It's so nice to know I have people to talk to that really get it. I think with people who don't have first hand experience with OC they will never understand. They fear it (as we do) but are uneducated about it. We on the other hand have to learn about it, which also teaches us that people do survive this horrible disease.

After watching every detail of what Steve went through and seeing how hard treatment was and recovery still is I know he's a survivor. As is everyone on this forum. It's tough, the toughest thing I've ever had to go through in my life and that's as a carer. For the person battling this disease everyday I can't begin to imagine how tough it is. Even with recovery it doesn't end. It impacts your life in one way or another every day (even 17 months out). If we can get through that and come out the other side still smiling then we can get through and do anything. I'll work out a way of nicely informing and educating people somewhere along the way. Either that or I'll lose the plot and not so nicely let people know (which I hope never happens although for some people it might not be a bad thing lol).

But thankyou. You all seem to know how to put my thoughts into perspective and help me to deal with everything we go through. Just by reading your responses I know now that I'm not the only one that deals with this and that helps immensely. Charm as always your post makes me smile. Just love your attitude.

Karen I had a friend who would disagree with you about me being positive so it's extremely nice to hear you say that. Because we had a difference of opinion about something she decided that instead of it being a good thing that I could think for myself and not follow the mob, that I was full of self pity and negativity because Steve had cancer (all this because I didn't say yes sharon, your right sharon). Needless to say she's now an EX friend and will remain that way.

Love you guys

Hey wendy good too hear how you feel i'm all about letting it all out good or bad.My partner likes to keep things in she is caucasian and i'm indigenous just to show where i'm coming from needless to say life was stressful before this happened and now i feel like i can handle anything now with the calm and grace that this situation has given me.People close and not so seem to want to avoid talking about it or change the subject when its brought up can be really annoying so it seems that they don't know how to approach the subject so now i'm taking the step of telling them how to talk about it because if not from me then who and the more we do it the more we can hopefully break the stigma attached to it and bring it out in the open because i feel will save a lot more than we do now especially here in oz.much love and peace to you and steve.


scc of tonsil
mets to left side of neck
teethout top/bottom
pegin/pegout
7wks rad/3wks chemo
last pet scan all clear
much love and peace to all

Malo I couldn't agree with you more. The more we talk about it the better. Sadly there is no where near enough awareness of OC in Australia. But yet I see more and more of us arriving at this forum (thankfully we find this site). I'm happy to say since posting this topic that I think people have finally gotten it or at least the most important people have. It took a while but I finally got it through to them that there is such a thing as survivor and that regardless of what lays ahead for us it's our life to live in a way that makes us happy.

Where in Qld are you Malo? We are moving back up there at the end of this month. Our first major step back into life. Can't wait