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.

• Myth 1: Cancer is a man-made, modern disease
• Myth 2: Superfoods prevent cancer
• Myth 3: ‘Acidic’ diets cause cancer
• Myth 4: Cancer has a sweet tooth
• Myth 5: Cancer is a fungus – and sodium bicarbonate is the cure
• Myth 6: There’s a miracle cancer cure…
• Myth 7: …And Big Pharma are suppressing it
• Myth 8: Cancer treatment kills more than it cures
• Myth 9: We’ve made no progress in fighting cancer
• Myth 10: Sharks don’t get cancer

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.

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!!

"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

For The Newly Diagnosed

I can not take credit for the below writings.  It was written by Jeff Tomczek who was diagnosed with leukemia at the age of 27.  This column had found its way onto one of the online cancer groups Karen is a member of.  I thought it was absolutely brilliant in explaining the whole process and journey and is spot on for what we had and are going through.

FOR THE NEWLY DIAGNOSED

...............Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.

Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable.You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever.

You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking.

When you get to the other side you won't believe it. They will tell you the disease is gone. Everyone you know will rejoice and return back to their lives. You'll constantly wonder if it is coming back. Slowly this feeling will fade, but cancer will always be a part of you. It will define how you see the world moving forward. You're going to feel like the future is a funny thing to think about because the present is going to suddenly seem incredibly important. Keep moving. You'll be more productive. You'll understand who truly loves you because they will still be there. You'll want to meet new people that connect to the newly evolved version of your old self. You'll want to let go of those that don't "get" who you are now. You'll feel a little guilty doing it. Then, you'll move on. You don't have time to waste. The greatest gift you've been given is that you now understand that and you're going to make the most of every second. You're going to be the most passionate person you know going forward. Translate that passion to a greater purpose. Be fearless again.

I was diagnosed with leukemia at the age of 27. Now 28, I have been told I have no trace of the disease in my body.

Jeff Tomczek is a freelance writer and the founder of C2Bseen, offering consulting services to niche brands and entrepreneurs.

Hyperbaric Treatment

After almost 30 sessions, Karen's hyperbaric treatment finally comes to an end this week.  It has certainly been a long 5 weeks of treatment.  Although not as physically taxing on Karen as the radiotherapy treatment, it still had its drawbacks in making it happen.  The reality of of spending 2 hours in the chamber everyday became quite the task.  Although only 2 hours, Karen lost a good 4 hours of her day as by the time you factored in travel time and the preparation required once she got to RAH, it really dominated her day.   So a huge thank you to family and friends and work for coming to the party again in helping us out with watching the boys when we were stuck and the flexibility of work hours to make it happen.  The burning question though, was it all worth it?

Yes, it was worth doing, but no, it did not have the desired results.  There has been no improvement at all.  So on that score it is disappointing, but not unexpected.  We certainly wont go away wondering if we hadn't tried this if it would have worked though.  So for any head and neck cancer patients considering this treatment if it is presented to you, I would say give it a go.  It was not successful for us, but that is not to say it would not be for you.  The hope was that it would alleviate some of the pain in the jaw and neck, help in increasing the production of saliva and general cell and tissue repair in the effected area.  Unfortunately none of this has happened.  In fact, (and this may just be coincidence), Karen has experience increased pain in the area since having had the treatment.  Prior to the start, she was able to manage her ongoing pain with over the counter pain killers.  However this is no longer proving to be enough and on bad days requires a harder approach to keep the pain at bay.  Like I said, it may just be coincidence, but my feeling, (based on no experience on the subject), is that perhaps the treatment has stirred things up in the area.

So what now?  We have an appointment tomorrow with Radiation and Oncology about the increased pain in the area.  The inability for Karen to eat any food without pain is a worry.  It is near on impossible to come up with a menu that doesn't have Karen grimacing at the table as she tries to eat.

Distressing for all of us, as food is such a big part of our lives and ongoing happiness.  A sad state of affairs when you can no longer enjoy chocolate!!  As we read somewhere on a post on Facebook this morning, "being happy shouldn't have to be a challenge".  It shouldn't be, but we still have a lot of days where it is.

All In A Days Work

Saturday morning, the youngest down for a nap, the older 2 busy gaming, Karen is at the RAH doing her Hyperbaric stuff and I have a spare few minutes to get a few things down with coffee in hand.
We are getting toward the end of this series of treatment for Karen.  She has just over a week to go.  At this stage, unfortunately there has been no change and no sign of any improvement in pain and saliva production.  The way things have gone for us in the last 9 months we really weren't expecting any change anyway.  Still we wont die wondering if we didn't give it a try.  Have included a photo of how Karen has been spending a good chunk of her day for the last month.

Intertwined with Karen's treatment, juggling care for kids while she does this and I am at work, we managed to still get in an ambulance trip and a stay at Woman's and Children's for our eldest son.  He has a severe allergy to tree nuts, with the Macadamia being his Kryptonite.  It has gotten to the point where it doesn't have to be ingested.  He reacts from it just being airborne.  So at the cash register of a Subway, our son had a white chocolate and macadamia cookie waved in his face by the staff member, thinking he was doing a good deed offering a complimentary cookie.  So within 15 minutes his eye was red and swollen, coughing and his throat starting to restrict.  As soon as it starts to effect the airways, its epipen time followed by the ambulance to hospital.   So after 4 hours of observation we got home.

Just when you think what else could go wrong, something usually does.  Needless to say we plan on keeping a low profile weekend and try and stay out of trouble.

Six Months On

My last post was on Christmas Eve last year and at that point I had decided not to continue blogging this journey anymore. We had got to the end of the radiotherapy treatment and I thought from here on in there is not too much more to say.  Also by this stage, both Karen and I were at a point where we just really wanted everything to stop and go back to how things were.  Karen was at the height of her side effects to the treatment, so our focus was really just about recovery and reclaiming what we could of our shattered little, frail lives.  So having pretty much forgotten about this blog, recently I had reason to have a look at it again and was astonished to see that I have had more than 5,000 page views and as recently as today.  I am under no delusions of grandeur that I have this many family or friends who look at this blog, so I suspect it may be other cancer patients and or family who are also going through the trauma of dealing with Adenoid Cystic Carcinoma (ACC).  It is a lonely journey and being such a rare cancer with very little information about it, it is only human nature at some point to seek out others who have travelled this path before.  So I have taken this juncture to bring family and friends up to date as to how we all are and hopefully at the same time educate you as to some of the misconceptions you may have.  For those dealing with ACC it may give you some insight into what to expect after treatment and the slow recovery process.

So first thing first.  Karen at this point as best we know is cancer free.  Some conjecture as to the time frame you put on it.  Some groups have you count from the time of diagnosis which would have her at 9 months cancer free, while others would have you count from the end of treatment, which would have Karen cancer free for 6 months.  Seems a trivial point, but there you go.  We know this because every 3 months Karen has alternating head, neck and chest CTI scans followed by chest x-rays.  She still sees the ENT surgeon every 3 months as well as Oncology every 3 months and also a huge priority on self examination.

So what are the side effects now and how bad are they?  From outward appearances, all would seem to be fine and that would be the understanding of many or our friends and work colleagues.  Karen's face has cleared up.  There is only a very faint discolouration around the area that was treated with radiotherapy.  On close inspection around the mouth and chin area, the skin appears to look quite old and has lost its elasticity much to Karen's disappointment.  The scar running along her neck where the tumour was taken out has healed up very nicely and is hardly noticeable unless pointed out.  So I can understand for those not in the "circle of trust" to think that it is all behind us now and everything is fine.  Inside the mouth is a different story.  On a daily basis, Karen still has considerable pain in the jaw and teeth.  The area is very tender and any knock or bump she receives around this area will have her in tears.  Codeine, although not taken everyday is still very much her friend, that is after going through the 20 questions at the chemist before they give it to us.  There also appears to be some permanent nerve damage.  The area along the scar line and above is numb.  Karen quite often complains of pins and needles sensation in the chin area.   Although her drooping lip which was sustained during the initial surgery and associated nerve damage has improved, she still has times particularly when she is tired when it droops.   Karen also still has little to no saliva.  It was hoped that with the one remaining saliva gland that was saved, that it might compensate for the missing others and produce more, but this has not been the case.  So artificial spits and gels and lubricants are used but they are only good for very short term relief.  Eating without the presence of saliva is also very problematic.  Food is not as easily broken down and just the very basic process of swallowing becomes difficult.  She also has difficulties opening her mouth wide enough to get food in the mouth, so a careful choice of foods to eat has become her norm.  After eating anything, her mouth will become red and painful and in some cases almost instant ulcers and rawness will follow.  So there are no foods that are without problems.  The obvious no go zone foods are anything remotely spicy and or acidic.   It has been a real challenge to come up with menus that she is able to eat and enjoy.  It is amazing just how many recipes have tomato in it, so a huge chunk of our regular week day meals are no more.  On a final note about side effects and I am sure there are many more that I have missed, just the very act of kissing has been compromised.  Given her mouth  area is so sore, a peck on the lips is about the extent of it.  So the level of intimacy that Karen and I shared before has certainly been downsized.  Enough said on that subject.

For me, the biggest hurdle to get over has been a mental one.  (Some may say that has always been the case).  When we first found out that Karen was cancer free, it was more a sigh of relief rather than any jubilation.  It is very hard to get really excited about the future knowing the type of cancer Karen had and the outcomes based on the statistics available.  So as every 3 month check approaches a dark cloud certainly descends as we contemplate all the "what if" scenarios.  It is all consuming.  We are told this process gets easier with time, but we are yet to experience that ourselves.  So as far as feeling positive goes, that is a real battle and something that at the moment is not the default setting.  I take some comfort in that even the Cancer Council has said it is okay to feel that way.  It went further on to say that there is absolutely no evidence to support that being positive has any outcome at all on treating cancer or whether it will return.  Having said that though, obviously it is not the way you want to go through life either.  We have both seen councillors individually, which has been good.  Their advice has very much been focusing on living for the now.  Making the most of each situation now and not thinking about what tomorrow will hold.

Since the treatment finished, Karen has also sought out and joined several Facebook groups.  An overseas head and neck cancer group and also an Australian group specific to ACC.  They have provided Karen with a sense of knowing she is not alone and others are going through the same things as she is and feeling the same way.  As much as I have been with Karen every step of the way as we have dealt with this, I really have no idea of what she has been through.  Having said this and I certainly believe there is a place for these sort of groups, I word of caution.  They do tend to be a bit on the negative side.  As one member had written, all the "well people" are not on the web and involved in facebooking with these groups as they are too busy enjoying life.  So in my opinion they are good in moderation, but do have the tendency to bring you down further when you may already be already struggling.  My thoughts only and if you find comfort in those groups, then that's fantastic.

Where to from here?  With Karen's last check up, we were told that the side effects that she is experiencing now will not improve.  At 6 months this is what it will be for the rest of her life.  Given she is still young and the quality of life has been compromised substantially, they have referred Karen onto Hyperbaric therapy.  There has been some success in the United States with head and neck cancer patients.  The decompression and hyperbaric treatment has shown some improvement in restoring tissue  that was damaged and or killed by the radiation.  The idea being that the very oxygenated blood will improve circulation and possibly reduce pain and increase saliva.  So Karen is half way through this therapy.  It involves going into Royal Adelaide Hospital 6 days a week and spending 2 hours in the chamber over 30 sessions.  If there is to be any improvement, it should start showing itself between session 20 and 30.  Of the cancer patients that have undergone this treatment, approximately 50% have had some degree of improvement.  So we shall see.

This next paragraph is a difficult one for me to write, but one I feel I need to write.  No doubt it may disappoint my Christian friends, but I have been honest with all my other writings and would not want to just masquerade over my faith and where I am at.  I feel like such an impostor, especially when another Christian brother or sister comments how we have been such an inspiration or encouragement to them by the way we have handled all of this.  Nothing could be further from the truth.  I have drawn very little comfort from God during the period and have very much felt we have done it alone.  When you are really stretched and you look at the very real prospect of life without your partner and mother to your children, I have found it a real struggle to find the blessings in this situation and even harder to praise the God who has allowed this to happen.  The notion that it is all for a reason and we don't see the big picture stuff gives me no solace.  I know as Christians we are not exempt from the hardships of life.  In fact we deal with all the tragedies of life like everybody else, but perhaps with an extra sprinkling of persecution and guilt for good measure.  So my Christian walk of late has been more of a stagger.  Not the easiest thing to come out and say in Christian circles, but unless you have walked in our shoes you will not fully understand.  So having said all that, I still go to church, but not regularly. I still believe in God, but just feel the need for some time and space to help the wounds heal.  At the moment I have the head knowledge of who God is but lack the heart relationship.

Apologies for the long winded update, rant and rave.  A lot to cover over 6 months.  I hope for those who read this, you may come away with a better understanding of what we are going through and if this is your journey as well, I sincerely wish you and your family all the best.

One final comment.  A shameless and blatant plug for my wife's business. In which she has thrown herself and found great comfort in as she's journeyed through her time of cancer and treatment. She says it is relaxing, meditative, and takes her mind away from what she's dealing with each day. She is also using it to benefit cancer research, so maybe a blessing there after all. Karen's Cookie Jar. Please check out and support her facebook page at https://www.facebook.com/karenscookiejar
- specialising in bespoke and artisan cookies with part proceeds going to Cancer Research.  The cookies that Look Good, Taste Good and Do Good.
For further enquires or orders, contact Karen at either her facebook page or email karenscookiejar@live.com

Busy Getting On With Living - Some Final Thoughts

Christmas day 2012.  At the start of this blog it seemed so far away, but here I am, sitting here on Christmas night, feeling slightly uncomfortable having eaten and drunk just a little too much, but still falling to the temptation of jamming a Favourite's Flake in my mouth with a handful of nuts.  We just got a call from Dr Gowda from India just to check again how Karen is going.  Still blows me away to think just how much he cares even on holidays.  I certainly don't leave work with that level of passion.

I have decided this will be my final blog about our cancer journey.  It really has been a runaway roller coaster which finally came to an end on Monday.  Karen had her last treatment that afternoon.    It was a very emotional day, as we were so glad to be finished with the treatment, but by the very nature of going in to the RAH every day for the last 7 weeks, met some wonderful people whom we said goodbye to.  I can not speak highly enough about all of the staff we have encountered.  Right from the front desk to the nurses station, the radiotherapists and oncology doctors.  Their level of care and compassion is second to none.  We are so indebted to you lovely people.  Thank you.

We are now focused on recovery, which will be another long and arduous road I am sure.  We have been told that the side effects will continue and may even worsen over the next 2 to 3 weeks before starting to get better.  I still struggle with the notion that the thing that has caused Karen so much pain is the cure!  We are now only required at the RAH on a weekly basis for  the next 6 weeks or so.  Hopefully the feeding tube will be able to be removed in 2 to 3 weeks.  A CT scan is also scheduled for  the 6 week mark.  So that's our January pretty much taken care of.  I am back to work on the 7th, but will still be a bit all over the place attendance wise as we still try and juggle appointments and kids.  I suspect Karen will still be on morphine for most of January so that kind of dictates what we can do as well.  

So that's the practical side of it all.  On the emotional side of things, I am pretty much done.  Without doubt, last week was probably the hard week of all.  With the constant worry of Karen and what a poor state she was in, trying to avoid her being admitted and then Nate with his surgery and subsequent infection.  I really felt I got to that point where I just couldn't keep doing it any more, but i did.

Closing Thoughts. 
I hope this has worked.  I don't wont to go through this again.  I would not wish this upon anyone.
Cancer is lonely.  As much as we have been helped by so many people on so many fronts, it is a lonely journey.  Even with Karen home it is lonely.  She is not able to speak at the moment, she is constantly tired and the very nature and location of the side effects means I am hesitant to get to close in case I accidentally cause her pain.  I find I am doing a lot more of the kids running around and that is lonely.  It is like a snapshot of what it would be like without Karen and I hate it.  It upsets me that I even think it, but that very thought still lurks in the background.  

Thanks again in no particular order to all the staff involved at the RAH, Cedar College, Telstra, Klemzig Community Church, family and friends.  We could not have made it to this point without the help of so many.  We are still overwhelmed and a little embarrassed by the generosity of you all and the willingness to help.  So what now?  I plan on getting busy with living.  If nothing else, this experience has shown us the frailty of life.  It makes you stop and consider and prioritise what is important in life.
For me it is my family.  It always has been, but perhaps I never really stopped to truly appreciate them daily as I should.  My beautiful wife and my wonderful, funny, quirky three boys  are the loves of my life and are the reason I get up each day to take on what lays ahead.  I look forward to doing this for many years to come.

Light At The End Of The Tunnel

I have to stop saying dumb things like, "surely it can't get any worse."  Guess what?  It did.  On Thursday, Nate took a turn for the worse after his operation, getting an infection.  With a fever that night and the following day I ended up taking him to emergency at Woman's and Children's.  So now armed with antibiotics to add to our growing arsenal of medications, today it appears he is beginning to get back on the mend.  This on top of the worry of Karen just about did me in.  It says in the bible that God will never give us more than we can handle.  Sitting in Emergency last night with Nate, reflecting on all that has happened to our family, I was really having reservations about this, but here I am the next day, spirits buoyed by Nate's improvement overnight, telling you all about it.

So hopefully with Nate's little sub-plot dealt with, it is back to the business of Karen and her treatment.  We survived the rest of the week managing to keep Karen from becoming an in patient, due to her increasing side effects.  She has surprised a lot of staff at radiology who have commented that people with far less side effects than what she is dealing with have been admitted.  Having said all this we have had lots of discussion with her doctor here at RAH, a Professor and her consultant who is currently on holidays with family overseas.  He has been fantastic keeping in constant email contact with me getting updates about Karen, culminating in a phone call late on Wednesday night from India. So  after much communication between all parties it was decided that in the interest of Karen's long term health that they needed to cut short the therapy by 3 sessions.  This now has her having her last treatment on Christmas Eve.  It was agreed that there would not be any compromise in the out come of the cancer treatment by shortening the treatment.  The real concern however was that if they continued they would leave Karen with some long tern ongoing side effects which could further reduce the quality of life.  As it is, I think we are in for a longer than normal recovery period.  Even though the radiotherapy stops on Monday, the side effect will continue to manifest for a further 2 weeks before we will see any signs of improvement.  So just another example of how God has been carrying us on this journey and never leaving us or forsaking us.  Just when we really thought it beyond us to get through another week of treatment, the light at the end of the tunnel become closer, brighter, warmer and more tangible.

So looking forward now to just enjoying Christmas with family and just forgetting all the dramas for a few days.  It will be nice not to have to travel into the RAH everyday as we migrate to weekly visits and in months to come, monthly visits and then 3 monthly visits to 6 monthly visits to yearly visits, but that is a way yet.  

Rock Bottom

Just looked back on the last post and it has been almost a week since my last entry.  I normally like to do a Monday post with the latest photo comparison but Monday afternoon and evening was a write off.  Tuesday was even worse and here we are Wednesday already and my first chance to sit and string a few words together.  So a quick recap.

Monday reads like a tail of two cities.  Around lunch time Karen and I headed into my work place to see staff and thank them for all the things they have done thus far.  We were so surprised to see that there were even more gifts for us.  We were presented with a beautiful gift basket of Christmas goodies and also some pre loaded visa cards.  The multiple call centres in my building for the month of December had been running fund raises for us and we were again totally overwhelmed with the generosity of our Telstra family.  I will not mention the amount raised as I am a little embarrassed by the amount, but I can say what ever amount you might be thinking, you are not even close.  THANK YOU Telstra family.

We then left work for the treatment at the RAH that afternoon.  By the time Karen and I got to Oncology Karen was not well at all.  She had the shakes, a temperature and extreme pain in the mouth and skin around the neck.  The on duty oncologist reviewed her and it was decided she was not well enough to have treatment that day.  We then spent the next hour there in the nurses station being cared for and cleaned up.  They gently and meticulously removed as much of damaged skin and cleaned the raw skin and applied the purple stuff to dry and protect the effected area.  We were boarder line being admitted as inpatients that night, but managed to plead our way out of it. Fortunately her temperature was back to normal by the morning.  Tuesday begins.

Tuesday was the worst day of this whole process by far.  To complicate our already complicated routine, Nate was booked in for day surgery to rectify mild Hypospadia that he was born with.  (I won't go into the details of the condition so feel free to google it).  So I was at the Memorial Hospital from 7.00am and Karen was doing her regular RAH shuffle with her Dad in tow that morning as well.  This time Karen's treatment did go ahead with the prospect of trying to get through to the end of this week with perhaps another rest day on Monday.  With Christmas and Boxing Day break, this would give her a 5 day break.  These days are not lost, but will be added onto what was the end date of 28th of December.  Poor Nate was in a bad way and was in consolable for  the most part.  So last night was a long sleepless one while we attended to him about every 2 hours.  He is asleep now and hopefully feeling a bit better than yesterday.  Absolutely heart breaking to see him in so much pain and not be able to do anything for him.  So lots of tears in our house yesterday.  We both really feel like we have hit rock bottom.  Surely things cant get any worse.

Mondays pictures are a little gross, but it is what it is.

Rest Day

Feels like a Friday today.  The last of the school graduation nights was last night and the kids broke up from school at 12.30 today.  It  is officially, the school holidays have started.  A very close family friend also offered to do the hospital run with Karen this morning.  As much as I didn't want to leave Karen and be there for her, I really appreciated the day off from the cancer routine.  After dropping the kids off at day care and school respectively, Mum and I headed up to La Vera cheese shop so she could buy some cheese to take back to Townsville on Saturday.  After lunch I had the rare luxury of having a sleep for a couple of hours.  So I am feeling suitably refreshed.

Karen got the okay to continue treatment today and is set to be assessed again tomorrow.  If we can get to the weekend, then come Monday, the area that they are treating will be reduced down to the site of the tumour for the next 10 session.  It is still a very much day by day proposition and is solely dependant on Karen's state of health.  The morphine dosage has been increased to stay atop of the pain and frequency of the pain spikes.  Her skin is really taking a beating now.  It is blazing red and starting to break up and weep.  She has managed the feeding tube and feeding with her normal tenacity.  What seemed such a mountain last week has quickly become part of the daily routine.

So where to from here?  Mum heads back to Townsville on Saturday.  She has been an absolute blessing.  She has held the fort while we have spent a good part of each day at hospital.  She has cared for Nate and been home for the boys at the end of day.  She has helped out immeasurable around the house, taking care of all the little time consuming things that need to be done.  She has really taken away many of the burdens of day to day"stuff".  Come Monday, Karen's parents will be staying up in Adelaide to take the baton so to speak.  With out their help it would be a nightmare I am sure.  I have also extended my time off work, which will enable me to continue to care for Karen and the boys through until the end of treatment, which is a huge relief.  The thought of not being there for Karen is just one I don't want to consider.  1 day and 2 weeks to go!!!!!  Then the recovery......

Week 5 - Feeding Tube

Well, things continue to be pretty messed up.  I am not going to say a whole lot.  The photos kind of speak for themselves.  The usual, week 1 on the left and week 5 on the right.  The burning on the outside is now very sore and itchy, but still pales to the damage  on the inside.  It had come to a point where Karen was no longer able to continue to drink with out major discomfort, so the decision was made to insert a feeding tube.  Although feeling uncomfortable, it means Karen is now able to take in all the nutrients and medicines she needs without the pain.

Bad to Worse

Well today capped off another week that just finished bad to worse.  I am really looking forward to the week when I can say that it went from worse, back to bad. We are waiting for the plateau of pain, but each week finishes just a little worse off than the previous.  This last week has been a real juggling act with pain management, weight and ulceration.  With the prospect of a feeding tube just 3kgs away, Karen has managed to maintain her weight just with the 4 cans of Ensure Plus.  Sounds easy enough but it has been a real struggle to drink that quantity.  The process of swallowing and talking is getting more and more painful.  It is quite scary to see how quickly the situation can change.  Only this morning at the Doctor Review, Karen commented that her throat was starting to feel sorer.  By early evening this had deteriorated to the point we were weighing up our options to head into the RAH Emergency.  The pain has increased to a point where Karen can not talk without great discomfort.  She is now passing me notes to communicate.  It appears there may be further ulcers down her throat making it more uncomfortable to swallow and in particular to continue to drink the Ensure Plus to maintain her weight to keep the feeding tube away.  The other main concern now is if some of her ulcers join up to become one large ulceration, then they will have to stop therapy to allow that area of tissue to repair before resuming.  So like I said, a real juggling act with consequences of dropping any of the balls.  Someone once commented that, "the trick to juggling is determining which balls are made of rubber and which ones are made of glass."  At the moment it feels like we were only issued with glass ones!

So based on this evening, our challenge is to get through the weekend without having to present ourselves at Emergency.  Ideally we want to get through to Monday when we can see one of the Oncologists and be guided by them.  Best case scenario is that things settle over night and tomorrow brings with it some relief and we are able to continue on.  However we are bracing ourselves for the real possibility of a feeding tube and potentially pausing the therapy or reducing the area that they are treating to allow her mouth to repair.

Its funny reading the previous posts and what we thought were painful periods.  They really do pale in to insignificance compared to what Karen is dealing with now.  This week we are both really done with it all, hitting that point of being physically, mentally and emotionally spent.  Next week being week 5 of treatment, we pray may be full of good news to share.