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



1 comment:

  1. Hi Steve & Karen, just stumbled on to this... Sending warm, healing thoughts to you both xxx Val Howard

    ReplyDelete