What I would like people to know

With many of the blogs, webpages, and Facebook pages that I have found related to Cancer, they all seem to have this in common.  The author’s personal opinion of a top 10 list of things that are pet peeves, or things that they wish people knew.  So here is mine…..but it won’t be 10.

The things that I wish people knew about Cancer patients – or at least specifically – about ME as a Cancer patient:

1- It is not contagious, you can’t catch it, and if you treat it like a big dark scary secret – it becomes one.
Most patients need to talk about it, which is the therapy… of course, the best people to talk with about Cancer is other Cancer patients.
I kinda gave up on mental health professionals because it was more fun to meet another Cancer patient and have beer with lunch.  Some of my riding friends do the exact same thing that the professionals did, but it is more fun to have beer during a “session”.
Don’t think this means I want to make any get together all about me – I don’t.   Talking about the normal conversation pieces of life is also healthy and part of normal life.  But I don’t want people to be afraid to ask about the Cancer journey – you may get heckled if you aren’t up to date on my blog posts if you ask a question I recently answered – but that is part of my amusement.

As mentioned, this isn’t a big dark scary secret – so, you can learn about it.

2 – I won’t call you.
Everyone always says, “call if you need anything”.
I am already concerned about my uncertain future becoming a burden on the lives of others, as I already have what appears to be a list of demands, needs, and wants (can’t attend some events very long, prefer people come to our house, rarely commit to anything long term, etc). I am only too aware that I may become a larger burden in the future, when I have a substantial task and will need to ask for a large amount of support.  To ensure that I don’t overuse “being a burden” – I will wait until I am really desperate, or have a big request.

Don’t argue it, just understand it.

What I really need to hear is “Is there anything you need right now?”  Sometimes the answer might be – someone to have a drink with.  We need friends, I have confined our social life drastically.  I have mentioned in Facebook posts that some friends got more distant, or disappeared completely; some friends have become much closer (and that is appreciated).

3 – Every day is different.
Just because I couldn’t go for a coffee when you texted today, doesn’t mean I don’t want to next time.  Please don’t stop asking (see point above).  Every night, sleep is different which has a trickle on effect for the next day, and possibly the day after.  So, just because I didn’t today, doesn’t mean I don’t want to next time.
Each day, different things spend their time bouncing around inside our skulls.  Sometimes they are simple and easily forgotten, other times they are doom and gloom freakouts about long-term financial future, medical future, where to live on reduced income, family impacts etc.  Going to bed when these things are on your mind is not a good thing, and usually result in a less than optimum sleep.  Each day you will think of something different – what will I do if I need to grow up and get a job?(which is a moderate version of the financial future freakout)  Each one will impact sleep differently. No rhyme or reason, it’s just the way it goes.

4 – Forwarding stuff you saw on the internet/social media that cures/prevents Cancer.
I appreciate that you thought of me. Trust me, if it is on the internet, I am likely already subscribed, have read the fine print, checked the linked sources, googled, and cross referenced.  I have a list of teas, herbs, foods and things that are all supposed to cure cancer.  I can‘t try them all, at once.  So, I might not get to yours as some are 6-8 week programs.  Keep in mind, anything that I think will impact my immunotherapy, or is not permitted by the Military (such as Cannabis), I won’t be trying. Key to many factors of this is understanding what each of these ideas does, and what my current regime of treatment entails – I don’t want the 2 options fighting against each other in my body instead of doing the job they are supposed to be doing.  Perfect example is that I won’t try something that is meant to suppress anything.   BCG is trying to put part of my immune system into overdrive, I don’t want to take something that may counteract that, by suppressing a natural body reaction(while it suppresses the Cancer as well).

Please don’t misunderstand this paragraph. Just because I didn’t try or demonstrate acceptance of the information you presented, does not mean I didn’t appreciate the gesture. Please understand that I have likely considered the impact on all the other concepts that I have heavily researched and it may not fit into my world – right now.

5 – Many of your pre-conceived notions, even if based on an experience of a family member or close friend, will be wrong.
Many people look at me and state “you look good”.  I need to work on my reaction to it (I don’t react well).  My initial reaction is to ask – “how am I supposed to look?” A typical misconception about Cancer patients – not everyone loses their hair.  People assume that I must not be on an aggressive treatment plan, or really impacted, because I still have my beautiful mane.
Every Cancer is different.  I have the 5th most fatal Cancer in Canada.  That is because most patients (more elderly than I) cannot absorb the punishment of treatment.  They also cannot absorb the major surgery trauma of the only option if treatment isn’t going as planned.  They give 6 months between 3 rounds of BCG in a session because of the energy drain and to allow my body to recover.  Most of you will not see the side of me that is completely exhausted.  I have told my oncologist that I want the most aggressive course of treatment that he is allowed to give.

6 – Don’t think it can’t happen to you.
I spent pretty much my entire adult life so far in the Military.  Almost all people I know in the Military avoid the Base Hospital/Doctors as much as humanly possible – think Monty Python and the scene with the Black Knight.  Big tough guys and girls figure that they can just walk it off, everything will be fine – 2x Tylenol and don’t worry about it.  Well, it doesn’t always happen like that.
If something isn’t right, you need to get it looked into.  I was diagnosed as a 43 year old non-smoker with the Cancer of a lifetime smoker in his 70s.  I wasn’t even symptomatic.  Talking to my Urologic Oncolgist, I had some indicators, but not something that I would have considered being “something wrong”.
I know that the concept among aviators was that you would end up grounded.  I think I can honestly say right now, being grounded while the docs chase a weird anomaly – probably not the worst thing that can happen.

To repeat a quote I got from Colon Cancer friend Colin – “Get your head out of your ass and get a camera up there”.  As my peer group aged, we always made the jokes about when it was time for people to get “the check” when the aircrew medical of that magical year came up.  Colin was in his early 30s, wouldn’t have been due to be checked for a number of years.

Don’t think it can’t happen to you, early detection is critical to the long-term survival, so if something in your body doesn’t feel or look right – get that shit checked out.

As I said, it wouldn’t be a list of 10… these are the more important points to me.  Every Cancer patient will be different, and have their own list of priorities.  That makes perfect sense – every Cancer is different, which results in a completely different treatment plan.  Thanks for joining me on this journey.