Wednesday 11 June 2014

The Great Cancer Conspiracy Theory and Other Misdemeanours


The very mention that you have cancer certainly brings them out of the woodwork.    You know the people.  The people who offer an opinion, a course of treatment, a suggestion of how and why you got cancer, what you should have done, what you can do now and of course the cure.  In short the "Nutters" in our society who feel it is their destiny to make themselves known and give you all the above based on nothing.  These people in general have not experienced cancer themselves and base their wealth of knowledge on the myriad of sites now available on the Internet about alternative treatments and cures and subscribe to the Great Cancer Conspiracy.

Since Karen was diagnosed with cancer we have been the recipients of some weird and wonderful suggestions about why she got cancer and the best way forward.  The obvious suggestions of diet and what we should be eating and what we need to cut out; cannabis for the pain, and also the effects THC have on killing cancer cells, mouth washes, tooth pastes, physical exertion to the point of sweating the toxins out of her body, and my all time favourites, compliments of the Christian faith, we were not doing communion properly, God was withholding his blessings on Karen, her unconfessed sins, and the old faithful, we will pray for you and you will receive a miracle healing.  So as you can imagine I was quite taken aback and aghast that when we first started the radiotherapy treatment why we  were not sat down for a joint, a green tea, a shot of lemon juice, a beetroot salad, carrot juice, and some apple vinegar and then sent on our way.  Why? Because they don't work.  Sure I believe in a healthy lifestyle, but don't confuse healthy lifestyle choices with a cure for cancer.

So first of all let me just say that I know the people who have made suggestions to us, did so and no doubt will do so with the best of intensions.  However, having said that, it doesn't make it any more helpful. The originator of these sites of information and unsubstantiated theories prey on the vulnerability and helplessness of the sufferer.  They offer a false hope and as you may of picked up on, are my pet hate!  So what of the Great Cancer Conspiracy?  It goes something along the lines that there is in fact a cure for cancer hidden away.  However cancer is a multi-billion dollar industry and a cure would destroy said industry.  The bottom line, cancer is my business, business is good.  Just a ridiculous notion.  Thank goodness for a common sense approach to the known mainstream treatments currently available now.  Thank goodness for the dedicated people who tirelessly fundraise for cancer research and early detection and new vaccines.

So in closing lets just hose down a few other misdemeanours about cancer and treatment.  For further details go to the Cancer Research UK site where I got this following information.

So in finishing up, before you offer an opinion about cancer, like and share a link or article on Facebook, check it out first.  Is it a hoax as most of them are? As an example, there is an email doing the rounds at the moment, and has been for quite some time, claiming to originate from Johns Hopkins about what causes and cures cancer (see this link for the statement from Johns Hopkins regarding the hoax email).

A good rule of thumb, if it sounds to good to be true, it usually is.


Monday 26 May 2014

Carpe Diem

KEATING Now, Mr… Pitts. That’s a rather unfortunate name. Mr. Pitts, where are you?
KEATING Mr. Pitts, would you open your hymnal to page 542 and read the first stanza of the poem you find there?
PITTS “To the virgins, to make much of time”?
KEATING Yes, that’s the one. Somewhat appropriate, isn’t it.
PITTS “Gather ye rosebuds while ye may, old time is still a flying, and this same flower that smiles today, tomorrow will be dying.”
KEATING Thank you Mr. Pitts. “Gather ye rosebuds while ye may.” The Latin term for that sentiment is Carpe Diem. Now who knows what that means?
MEEKS Carpe Diem. That’s “seize the day.”
KEATING Very good, Mr.-
MEEKS Meeks.
KEATING Meeks. Another unusual name. Seize the day. Gather ye rosebuds while ye may. Why does the writer use these lines?
CHARLIE Because he’s in a hurry.
KEATING No, ding!
KEATING Thank you for playing anyway. Because we are food for worms lads. Because, believe it or not, each and every one of us in this room is one day going to stop breathing, turn cold, and die.

Carpe Diem.  Seize the day.  I think we all remember the scene from Dead Poets Society, But what does it mean to you?  What does it really mean to you?  Is it just a cool saying and a nice notion or is it something that is tangible and reachable for you to achieve.  Is your Carpe Diem a pipe dream?  Life is uncertain, but what if you knew there was a very high chance that your life was going to be cruelly cut short.  Would you jump on the Carpe Diem train and go for it with a sense of urgency or would you think, whats the point, its all going to be for nothing anyway.  Should any of this matter if you have been diagnosed with cancer or not?  I don't have the answers, but just some thought rolling around in my head tonight.

Is Carpe Diem saying "no" more often when your default setting is to say yes?
Is it getting that tattoo that you always wanted and then some because now that you have one you just can't stop?
Is it finally being able to stop masquerading and start being the real you?
Is it changing rooms, moving house, going on holidays, quitting your job and chasing your dreams?
Is it opening your mind to other possibilities, religions, faiths and beliefs and recognising that YOU are strong, determined and it is your strength that has carried you to where you are now. 
I say yes to all of the above.  In fact looking at the brief list above, between Karen and I, we have done just about all of these things in the last 18 months since Karens initial radiotherapy finished.  I am not sure why in a lot of cases it takes something so abhorrent  like cancer to get you to this point of realisation.  Carpe Diem.  
So coming up next month we are making some more changes.  We have decided that Karen will resign from her part time day job to fully commit to her own business, Karen's Cookie Jar.  In the last 18 short months, the demand for Karen's decorated iced biscuits has grown and grown.  It has gotten to a point where much to her displeasure she has had to turn business away because there is literally just not enough hours in the day to complete the orders.  The art of decorated cookies started out for Karen as  a passion, shared with family and a few friends.  It is now more far reaching than that with cookies being ordered and sent to all parts of Australia and also overseas.
So it is really exciting and also scary to be doing away with the safety net of her current job, but like Karen said, "I can't very well have Carpe Diem tattooed on my wrist and then when the opportunity arises not seize the day!"   And what of my dreams?  Well my dreams are to see Karen achieve her dreams and "Carpe the Diem" out of these cookies.  If I can ride on the coat tales of her dreams, then my dreams are fulfilled seeing Karen happy and passionately reaching hers.  Carpe Diem!!



Sunday 11 May 2014

"But You Look fine."

Well,  it has been a time since I sat and put some thoughts into hopefully meaningful sentences to convey our journey of ACC and the life it gives you.  I did in fact blog earlier in the year, but I have removed that post because it seems I inadvertently offended some people.  As I discussed with the person, my intension was never to do so.  As a point of courtesy, although I stand by everything I said at that point, I removed the post and closed the blog.  In retrospect, I have reopened the blog, but removed the offending post.  I won't comment anymore about it except to say, LIFE IS SHORT!  If you are not entirely happy with a situation, follow your gut and instincts and effect the changes that you feel you need to.  After all, it is your life, not anybody else's.  Like with any big decisions, nobody would question the idea of getting a second opinion or multiple quotes for a potential big outlay.  The same applies with your life.  You have to go with what you think is best.

So where are we?  Karen is about 17 months into remission.  What does remission mean?  So is Karen cured?  "Cancer remission is often thought to mean that the cancer has been cured.  However, this is not always true.  Remission refers to the absence of disease activity within a patient.  It also implies that there is a potential chance for recurrence, but doesn't tell anything about the chances of this occurring".  What we do know about ACC unfortunately is that it is more likely a case of not "if" but "when".  There seems to be a lot of occurrence of it showing itself again 18 to 24 months after first being treated.  I see it a bit like being an alcoholic.  You may have been sober for a period of time, but you could potentially fall off the wagon at any point.

So how is Karen.  Now I give this next update, not to get sympathy or for an outcry for help, but more a case of just documenting the progression.  With over 6,ooo hits to this blog, I am under no illusion that it is more than just family and friends who are reading this.  So this is really more for those people who are also travelling the same path we have.  To look at Karen you would think everything is just fine.  Apart from the approximate 12cm scar that sits just under her chin on her right side you would be none the wiser as to what she deals with every day.  In fact given that it was almost 18 months ago that this whole ordeal started, we are very much off peoples radar, as we should be.  People are genuinely surprised when they ask how Karen is.  When Karen is asked now, she generally won't share what is actually happening.  Apart from sounding like a misery guts, it is usually long winded and not what the person was expecting.  The standard reply being, "but you look fine!"  Now, I am guilty of falling into the "you look fine" group to a certain extent as well.  Although I ask daily how she is feeling, she had been withholding how much pain she was actually in daily to spare me some worry.  This came to light when we had our first appointment at the Pain Clinic at the hospital.  Karen was referred to the clinic to try and find some alternative measures to deal with the pain she puts up with daily in her face and jaw.  On going through all the details of pain, with and without medication I was surprised as to just how bad things are.  So the bare bones of it are on a scale of 1 to 10, 1 being low pain and 10 being immense pain, without medication Karens pain sits around an 8 or 9 and with medication about a 5 or 6.  Neither figure desirable.  The main problem with pain management has been trying to find the right medication and dose which will not give Karen terrible side effects whilst still relieving the pain.  Her current treatment of Paracetamol, Ibuprofen and Codeine is not an effective long term solution in managing the pain.  So it is back to trying the other meds but in smaller doses to start with.  This already has been unsuccessful.  We were prescribed the smallest dose of which we then cut the tablet in half and that still had an adverse effect. Bad enough that it is not worth taking.  So it has been a case of rather putting up with the pain than deal with the side effects of the meds.

Karen still has restricted movement in her jaw and neck.  Not sure if this is a result of the initial operation to remove the tumour or the subsequent radiotherapy.  Either way, she has been going to a physiotherapist to try and get some more mobility back and give her a bit more comfort in doing just the day to day stuff.  You know, eating, talking and kissing her husband!  She also has an up and coming appointment at the pain clinic to trial a Tens Machine.  This when fitted to the face will give low electric impulse which may also alleviate some pain.  All worth a try.  So there you have it.  There is other stuff like the ongoing insomnia, but in the scheme of things it pales.

The emotional battle of dealing with cancer is still the big one.  Although the treatment finished some time ago, you continue the mental battle and to this date this does not get any easier for either of us. We both seem to tread the fine line of having a cry each day.  You may approach the day with the best intensions, determined not to let this disease railroad your day, but it can be the smallest thing that will tip you over and have all this crap rushing back to you in a violent reality check.  Also a huge shout out for the wonderful support that some of the online communities provide.  Adenoid Cystic Carcinoma - Australia Support and ACC FAMILY (international)
 are fantastic Facebook communities providing wonderful support and encouragement
 to its members.  Needless to say the very nature of the sites means that from time to time,
 seemingly all to often lately, one of the ACC Warriors lose their battle.  This is always 
distressing to hear and our hearts go out to the immediate families and also the greater ACC family.

Finally a plug for my wife's business.  Karen's Cookie Jar, has been wonderful venture in allowing Karen to 
reach out and grab hold of her dreams.  It also provides a wonderful distraction to the reality of ACC.  
You can check out her delicious tasting decorated iced cookies at:

Website      http://www.karenscookiejar.org
Facebook   https://www.facebook.com/karenscookiejar
Instagram   http://instagram.com/karenscookie
Pintrest       http://www.pinterest.com/karenscookiejar/my-cookies/
Email          karenscookiejar@live.com