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On some level I still can't believe I have cancer
So after almost three months of tests the ENT confirmed I have nasopharyngeal cancer.
Three weeks and a PET scan later they told me it's stage 4 with it having spread to the top and lower portion of my spine.

The oncologist has prescribed five to seven weeks of radiation treatment followed by the chemo to take care of the spread.
Right now, I am basically waiting for the CT planning appointment before they can begin.

I am 36, male. And I've been told that this is a pretty rare form of cancer, at least in North America.
My immediate family knows of course. But I find it hard to reach out to friends.
Can they actually relate? Especially on a rare form of cancer like this?
10 Replies
Narges
13 Posts
Hi dear, of course you can’t believe it. I am a fitness trainer and health coach with no history of cancer in the family but I have rectum cancer which is unrelated.
but believe me when you accept it and learn how to live with it( which is really difficult I know) life becomes easier. It’s ok to have anxiety and stress but don’t forget
you are young and strong.
ACH2015
2007 Posts
irregularprofit

You will find out who can and can't relate when you advise your friends. Some will rally, others may not. Shock and inability to deal with situations like cancer are not uncommon. When I was diagnosed, I chose to send mass email communication to inform all I wanted to keep in the loop. This way, they had the ability to answer me as and when they wished - and not feel like they were being put on the spot as individuals. Private conversations, visits and all the rest followed. My suggestion to you - don't take on everyone else's burden of dealing with your cancer. Those that can will, the others, well - don't worry about it. We as patients have enough on our plates to deal with. So take a deep breath and write out something to share with those you wish to - and send it. I did the same for workplace sharing as well - after telling the supervisor personally of course.

Rare cancer or not (mine is Unknown Primary Origin Cancer) you can spell out what type you are dealing with, and what stage of diagnosis and treatment you are at for them.

Hope this helps.

ACH2015
irregularprofit‍ like any that applies to cancer, you need time to adjust and ao will the people around you. As ACH2015‍ said, your focus needs to be you. I also sent emails to people; however, it wasn't because I had unacceptiong people. I sent emails because I coildnt remembered what I told people and I didn't want to keep repeating myself.

Another problem is that people don't know what to say because they can't identify with you and sometimes they're afraid to say the wrong thing so say nothing. I put a few tips together in a blog post. Maybe they will help. Maybe, if you agree with it, you could send it to people to educate them without using uour energy to do it.

http://www.laughterandcancer.com/blog/the-mysteries-of-cancerwhat-to-say-and-do

cancertakesflight
Boby1511
363 Posts
irregularprofit
hi there.
Saying it out loud a few times to strangers helped me come more to terms with cancer. I told friends after I was more comfortable with my acceptance of cancer.
Telling friends... maybe think about what you maybe need from them in terms of support.
The most common response I received was asking asking if I needed anything and if there was anything I wanted.
People may also be uncomfortable asking questions if they are unsure what you are comfortable sharing.
You may also get gifts... this I did find a little uncomfortable, but was nice thoughts. Friends generally like to take some sort of action.
Take care of you first. Share what you're comfortable.
You at the start of your cancer treatment, its' a big adjustment.
Brock
55 Posts
Hi irregularprofit‍ -

Like you, I found it difficult to reach out to friends after I was diagnosed with an unusual kind of colorectal cancer. So I didn't. No one said I had to. I sat in silence for about a month. But as the days and weeks passed, my headspace evolved. After my treatment plan was in place I told my family. Gradually I spread the news among coworkers, friends and acquaintances. I felt they deserved to know. It turned out that telling them was like relieving myself of a heavy burden.

They may not have been able to relate to my particular cancer but to me, that was irrelevant. Cancer was a word they understood. To this day no one - and I mean NO ONE - understands what I endured that summer of treatment and recovery from treatment. And it doesn't really matter.

What matters to me is the support I got from those near and far during my journey. I am absolutely, 100%, convinced that the positive-energy of the peeps in my community contributed to my eventually going into remission.

So that was my experience of sharing my cancer diagnosis. Maybe you'll decide to open up to others, maybe you won't. Whatever you do, go at your own pace and do what feels right. You have the right to do as you please and you have the right to change your mind as often as you like. You'll alway have the folks at cancerconnection.ca for gathering advice and venting. Wishing you all the best!!




Brock
55 Posts
Also, ask for and read the free booklets offered by the Canadian Cancer Society. They are invaluable.
I don't have any vices and I've always been generally healthy.
Although I don't treat my body as a temple and I am pretty sedimentary.

As preparation for the treatment though I am beginning to watch what I eat and doing 30 minutes of exercise everyday.
It tickles me to think that; if I survive this; I could actually come out a bit healthier.

Using a group email is a great idea. I wasn't thinking about the pressure put on friends when I talk to them individually.
ACH2015
2007 Posts
Brock‍ , irregularprofit‍ and everyone else reading, with covid 19 causing issues, remember to go to the RESOURCE PUBLICATIONS section of the Canadian Cancer Society website.
Like Brock - I found and still find the information within invaluable.

ACH2015
Cynthia Mac
3080 Posts
irregularprofit‍, Boby1511‍ Wrote:

The most common response I received was asking asking if I needed anything and if there was anything I wanted.


One of the things we recommend to caregivers on the site is to be really specific when there IS something you need or want. For example, rather than say, “I might need rides to appointments,” or “I could do with some help cleaning the yard,” maybe say, “Well, Chuck has offered to take me to appointments, and it would be helpful if you could back him up,” or “I was going to rake the yard on Friday, and if you could come and give me a hand, it would help motivate me to get through it.”

I have to say, your comment about being “pretty sedimentary” made me smile. Some days, I feel like I’m stuck in my own mud, too!
law
428 Posts
Hello and Welcome, irregularprofit‍ ,
Your post is written so realistically and describes the effect your cancer diagnosis has on you. Pat yourself on the back for reaching out to the ENT doc, taking the PET scan, and also bearing your emotions on this site. We are glad you found us as this is a group of supportive, honest, fun, and intelligent folks---cancer survivors, caregivers, some families, some friends, and people looking to educate themselves. Not everyone in your life circle wants to know about your cancer, your diagnosis, or your feelings physical and emotional. Others want to step up and will be your rock.Cancer teaches us a lot about 'people', but most of all, about our self.
Please keep posting your status, and searching this website. The post replies you have received already are a good start.
I had tongue cancer, radiation, and now glad to feel light years differently about the universe and myself.
law

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