Being 'cured'

[fancyfree]

We found out about my partner's testcular cancer just two months ago, and he had his orchidectomy two month ago almost to this day. He is undergoing a programme of strict surveillance and we hope that the surgery was curative.

But how do you cope when everyone forgets that it even happened? How to cope when people are insensitive? Each check-up is nerve-wracking and our lives have inevitably changed in ways we can't anticipate.

Today at work (I work in a very small place, and everyone knows about the tc) people were having a very loud conversation about life insurance, and travel insurance and how everyone needs it and premiums and all that stuff. About how it's so irresponsible to not have life insurance when you have a spouse. It stressed me out. We're getting married in one month's time and we had always intended to get life insurance to protect one another - that's out. We've also had to alter our honeymoon plans. I was getting more and more upset when people then started talking about cancer and policies and then someone piped up with "but they can't discriminate surely because even young people get cancer". To which I burst into tears and said "yes, I know they can".

How can you cope when everyone else brushes it aside, glad for it to be out of the way? It's only been two months. Do people really have such short memories?

Obviously, I'd love for tc to be a distant memory and to forget about it. But that's not happening any time soon and it will always be with us in some ways, and may be back sooner than we'd like.

I feel terrible getting upset about this when other people are having to deal with much worse outcomes. But I know you're here for support and wondered if anyone had any words of wisdom?

[dadmo]

Fancyfree:
I've never learned to cope with the insensitivity of others. I simply avoid dealing with those type of people. The only thing that made our life with cancer more tolerable was the passing of time and the accumulation of all clears.

[TCdoc]

Since I was diagnosed with TC my wife and I have realised more about those around us than we would ever have known otherwise.

Some, who we have barely known, have been so supportive that we have wondered why we didn't get to know them better earlier. One couple who we used to just say "hello" to have even changed their holiday plans to help us out!

Some have avoided any talk of TC at all either because they don't know what to say or have their own fears about the disease. My in-laws will talk to my wife about it but never mention it openly in front of me!

Thankfully few have been as insensitive as your colleagues. But some, who we used to think of as friends, are noticable by their absence.

Remember that surveillance means cured until proven otherwise.

[Earmansgirl]

The only thing I can offer is - people have been (for lack of a better word) incredibly STUPID when it's come to Eric's late stage TC (or cancer in general). Especially for someone so young to be soooo sick. Even family members! Like this is a hangnail and there won't be any fallout from it. Give me a break. The only thing I try to remind myself is to think back before cancer struck. Like 2 months ago - were you as versed about cancer or it's lifelong effects as you are now? I wasn't. I always THOUGHT I knew what bad was. Man was I wrong. I just don't think people get it until they're in it. Lets hope that's the case for the majority (because GOD FORBID anything bad ever happen to them) and they're not really that insensitive.

Just do your best. I know it's not easy and you'll have days where you want to scream and shout at people for not knowing the truth of everything associated with dealing with cancer. But just allow for the benefit of the doubt when you can. I used to scowl at people for having the audacity of laughing when my life was crumbling around my ears. Now I laugh with them. And roll my eyes at people who think the worst thing that could happen to them is something frivolous. Cancer really allows for getting your priorities straight.

Hang in there!

Jenny

[Jay68442]

Unfortunately there will always be people that talk without thinking. This will be the same for the rest of your life. All I can say is, try to understand that not every comment is directed towards you nor was it the intention of the person speaking to hurt you. If I find someone’s comments offensive or insensitive I either set them straight or walk away. Through my years of being a survivor I have been witness to thousands of conversations where people spoke from ignorance. I can’t educate everyone and to be honest many are not worth my time. I have developed one simple rule for sorting out who I deal with and how. My rule is “consider the source”. If my 90 year old grandmother says something out of line, well hay she is 90, move on. If my 35 your old brother says something out of line, set him straight. If they are not family then who the hell cares. Only those that have dealt with cancer can understand.

[boyce]

For those of you that know me here, sensitivity is not my strong suit. And my personal inclincation is almost always confrontation over avoidance. Had I been at your office with you, there would have been sparks for sure!

But...

Even though 1 in 3 of us will get cancer at some point, it still has a strong stigma to it. And talking about it makes people face their own mortality. And Heaven forbid, seeing a young person with cancer scares the bejeezus out of anyone!

I have come to believe that's why you get all of the, "Caught it early, tc is the best one to get, nothing to worry about" talk. This board is FULL of experiences with the ignorance/insensitivity of others.

Maybe you can invite the folks at work to visit your partner during a chemo session. Or to participate in a cancer fundraiser, or bring them in some literature about cancer and it's effects on society at large.

As a rule, if you remove the ignorace (that is, provide education), then sensitivity will follow.

And if that doesn't work, send em my way...I'll tune em up for you

[TCLEFT]

Even after dealing with this three times, going through radiation and two protocols of chemo, some folks are quick to tell me how lucky I am. One even thanked God it was the "Good" Cancer. So here is how I believe myself to be lucky. After a time I now have a tendency to laugh at these people. Most will never know life outside of their own silo or personal needs. I do. Most will never experience true compassion. I have. Most will never really know what life is worth. I do. Most rate their lives by the amount of "stuff" they have. I rate my life by the special moments. They're all special moments. You're stronger than you know. Educate those with the potential for humanity. Leave the bottom feeders where they are.
Much Love,
Mark

[Aegletes]

One book that I've found helpful in understanding the communications pitfalls of dealing with cancer and talking to people both outside and inside the cancer experience has been Help Me Live: 20 Things People with Cancer Want You to Know. It covers a lot of ground with respect to all the many misunderstandings that are bound to happen. It's also available in the UK for those living there.

[starjayroman]

There is much excellent advice on this thread. Can't do much more but offer my own thoughts.

I have not run into anybody as insensitive as you have. I often think of the way I was before Jay's diagnosis. I work with people who have cancer in there lives, I have grandparents who died of it, that stuff only happens when you get old, I never understood what they were going through until it happened to us. Now I understand only too well. Its kind of a before and an after. I don't think that people mean to be insensitive, just they don't have a clue what it actually is like to deal with it every day of your life. I like the tag line by one of our members: I am not goign to get it exactly right were it basically says that friendship begins when you realize that you are going through the same thing.