tag:blogger.com,1999:blog-78027565032702039882024-03-19T01:03:13.200-07:00Views From The Passenger SeatAnonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-7802756503270203988.post-4756973618283755812014-06-11T01:03:00.001-07:002014-06-11T01:03:57.965-07:00The Great Cancer Conspiracy Theory and Other Misdemeanours<br />
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. <br />
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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.<br />
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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.<br />
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So in closing lets just hose down a few other misdemeanours about cancer and treatment. For further details go to the <a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/" target="_blank">Cancer Research UK site</a> where I got this following information.<br />
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<ul style="-webkit-text-stroke-width: 0px; background-color: whitesmoke; box-sizing: border-box; color: #333333; font-family: Arial, sans-serif; font-size: 14px; font-style: normal; font-variant: normal; font-weight: normal; letter-spacing: normal; line-height: 20px; list-style: none none; margin: 0px 0px 10px; orphans: auto; padding: 0px; text-align: start; text-indent: 0px; text-transform: none; white-space: normal; widows: auto; word-spacing: 0px;">
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#modern-disease" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 1: Cancer is a man-made, modern disease</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#superfoods" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 2: Superfoods prevent cancer</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#acidic-diets" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 3: ‘Acidic’ diets cause cancer</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#sweet-tooth" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 4: Cancer has a sweet tooth</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#fungus" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 5: Cancer is a fungus – and sodium bicarbonate is the cure</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#miracle-cure" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 6: There’s a miracle cancer cure…</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#Big-Pharma" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 7: …And Big Pharma are suppressing it</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#kills-cures" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 8: Cancer treatment kills more than it cures</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#progress" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 9: We’ve made no progress in fighting cancer</a></li>
<li style="background-color: transparent; background-image: url(http://zniup3zx6m0ydqfpv9y6sgtf.wpengine.netdna-cdn.com/wp-content/themes/scienceblog/img/pink-bullet.png); background-position: 0% 6px; background-repeat: no-repeat no-repeat; box-sizing: border-box; color: #333333; display: block; margin-bottom: 0.5em; padding-left: 15px; text-decoration: none;"><a href="http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/#sharks" style="box-sizing: border-box; color: #6c5c99; text-decoration: underline;">Myth 10: Sharks don’t get cancer</a></li>
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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 <a href="http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html" target="_blank">Johns Hopkins</a> regarding the hoax email).<br />
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A good rule of thumb, if it sounds to good to be true, it usually is.<br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-59157102734186333112014-05-26T04:59:00.000-07:002014-05-26T04:59:29.694-07:00Carpe Diem<div style="background-color: white; border: 0px; color: #222222; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; margin-bottom: 10px; margin-left: 10px; outline: 0px; padding: 0px 7px 0px 0px; vertical-align: baseline;">
KEATING Now, Mr… Pitts. That’s a rather unfortunate name. Mr. Pitts, where are you?</div>
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KEATING Mr. Pitts, would you open your hymnal to page 542 and read the first stanza of the poem you find there?</div>
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PITTS “To the virgins, to make much of time”?</div>
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KEATING Yes, that’s the one. Somewhat appropriate, isn’t it.</div>
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PITTS “Gather ye rosebuds while ye may, old time is still a flying, and this same flower that smiles today, tomorrow will be dying.”</div>
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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?</div>
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MEEKS Carpe Diem. That’s “seize the day.”</div>
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KEATING Very good, Mr.-</div>
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MEEKS Meeks.</div>
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KEATING Meeks. Another unusual name. Seize the day. Gather ye rosebuds while ye may. Why does the writer use these lines?</div>
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CHARLIE Because he’s in a hurry.</div>
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KEATING No, ding!</div>
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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.</div>
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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.</div>
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Is Carpe Diem saying "no" more often when your default setting is to say yes?</div>
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Is it getting that tattoo that you always wanted and then some because now that you have one you just can't stop?</div>
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Is it finally being able to stop masquerading and start being the real you?</div>
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Is it changing rooms, moving house, going on holidays, quitting your job and chasing your dreams?</div>
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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. </div>
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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. </div>
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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.</div>
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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 <i>"Carpe the Diem"</i> 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!!</div>
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-7669816308799270282014-05-11T17:57:00.000-07:002014-05-11T17:57:07.729-07:00"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.<br />
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So where are we? Karen is about 17 months into remission. What does remission mean? So is Karen cured? <i>"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".</i> 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.<br />
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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.<br />
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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. <br />
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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. <span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; font-weight: bold; line-height: 18px; text-indent: 2px; white-space: nowrap;">Adenoid Cystic Carcinoma - Australia Support </span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; text-indent: 2px; white-space: nowrap;">and </span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; font-weight: bold; line-height: 18px; text-indent: 2px; white-space: nowrap;">ACC FAMILY (</span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; text-indent: 2px; white-space: nowrap;">international)</span><br />
<span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; font-weight: bold; line-height: 18px; text-indent: 2px; white-space: nowrap;"> </span><span style="background-color: white; text-indent: 2px;"><span style="color: #141823; font-family: Helvetica Neue, Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 18px; white-space: nowrap;">are fantastic Facebook </span></span></span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;">communities providing wonderful support and encouragement</span><br />
<span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;"> to its members. Needless to say the very</span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;"> nature of the sites means that from time to time,</span><br />
<span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;"> seemingly all to often lately, one of the ACC Warriors lose </span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;">their battle. This is always </span><br />
<span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;">distressing to hear and our hearts go out to the immediate families and also the </span><span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;">greater ACC family.</span></div>
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<span style="background-color: white; color: #141823; font-family: 'Helvetica Neue', Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 18px; white-space: nowrap;"><br /></span>
<span style="background-color: white;"><span style="color: #141823; font-family: Helvetica Neue, Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 18px; white-space: nowrap;">Finally a plug for my wife's business. Karen's Cookie Jar, has been wonderful venture in allowing Karen to </span></span></span><br />
<span style="background-color: white;"><span style="color: #141823; font-family: Helvetica Neue, Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 18px; white-space: nowrap;">reach out and grab hold of her dreams. It also provides a wonderful distraction to the reality of ACC. </span></span></span><br />
<span style="background-color: white;"><span style="color: #141823; font-family: Helvetica Neue, Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 18px; white-space: nowrap;">You can check out her delicious tasting decorated iced cookies at:</span></span></span><br />
<span style="background-color: white;"><span style="color: #141823; font-family: Helvetica Neue, Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 18px; white-space: nowrap;"><br /></span></span></span>
<span style="background-color: white;"><span style="color: #141823; font-family: Helvetica Neue, Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="font-size: 14px; line-height: 18px; white-space: nowrap;">Website </span></span></span>http://www.karenscookiejar.org<br />
Facebook https://www.facebook.com/karenscookiejar<br />
Instagram http://instagram.com/karenscookie<br />
Pintrest http://www.pinterest.com/karenscookiejar/my-cookies/</div>
Email karenscookiejar@live.com<br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com1tag:blogger.com,1999:blog-7802756503270203988.post-62465475337165677682013-10-21T03:59:00.001-07:002013-10-21T03:59:31.967-07:00For The Newly Diagnosed
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">I can not take credit for the below writings. It was written by </span><span style="color: #262626; font-family: 'Lucida Grande'; font-size: 17px;">Jeff Tomczek who was </span><span style="color: #262626; font-family: Lucida Grande;"><span style="font-size: 17px;">diagnosed with </span></span><span style="color: #262626; font-family: 'Lucida Grande'; font-size: 17px;">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.</span></div>
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<span style="color: #262626; font-family: 'Lucida Grande'; font-size: 13pt;">FOR THE NEWLY DIAGNOSED</span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">...............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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">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.<o:p></o:p></span></div>
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<span lang="EN-US" style="color: #262626; font-family: "Lucida Grande"; font-size: 13.0pt;">Jeff Tomczek is a freelance writer and the founder of C2Bseen,
offering consulting services to niche brands and entrepreneurs.</span><span lang="EN-US"><o:p></o:p></span></div>
<!--EndFragment-->Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-37722394121224496782013-07-23T19:49:00.001-07:002013-07-23T19:50:24.814-07:00Hyperbaric 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?<br />
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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.</div>
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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.</div>
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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.<br />
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com3tag:blogger.com,1999:blog-7802756503270203988.post-76391560899054013532013-07-12T17:48:00.002-07:002013-07-12T17:48:15.800-07:00All In A Days WorkSaturday 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.<br />
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. <br />
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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. <br />
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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.<br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-25549764128073086722013-07-06T02:10:00.003-07:002013-07-06T02:10:47.352-07:00Six Months OnMy 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.<br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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<br />
- specialising in bespoke and artisan cookies with part proceeds going to Cancer Research. The cookies that Look Good, Taste Good and Do Good.<br />
For further enquires or orders, contact Karen at either her facebook page or email karenscookiejar@live.com<br />
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com2tag:blogger.com,1999:blog-7802756503270203988.post-68099241567264214262012-12-25T03:52:00.002-08:002014-05-20T20:36:09.330-07:00Busy Getting On With Living - Some Final Thoughts<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Closing Thoughts. </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I hope this has worked. I don't wont to go through this again. I would not wish this upon anyone.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">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. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com1tag:blogger.com,1999:blog-7802756503270203988.post-68492249472505534572012-12-22T04:01:00.001-08:002012-12-22T04:01:23.376-08:00Light At The End Of The Tunnel<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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. </span><br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-42500198141205884692012-12-18T15:23:00.001-08:002012-12-18T15:23:38.852-08:00Rock BottomJust 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.<br />
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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.<br />
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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.<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb5PsNYOlSTfTIGaJXgeW9UA3CQK63c6DZV4DDPvMRdmP_JlRQMvPPA5nJViBIW8zUJz3Qo9S74LmikUgkxUaHBgwSwYvHQgCJxoVmUoE6i19wEysAm6g1-qL1iSR_K5fFL8W34NK2OKTF/s1600/DSCF7003.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb5PsNYOlSTfTIGaJXgeW9UA3CQK63c6DZV4DDPvMRdmP_JlRQMvPPA5nJViBIW8zUJz3Qo9S74LmikUgkxUaHBgwSwYvHQgCJxoVmUoE6i19wEysAm6g1-qL1iSR_K5fFL8W34NK2OKTF/s200/DSCF7003.JPG" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvIQn7IW7rxqFbjMZ58tHqoEv0QCzyNgDvOlQkWBUdLrYqjUilObNMy2Vd5I723VaHBAP4NIwxOtC_PQjKkKxd89fsNOAxq_60c3Pr1ZGWk_jHnJ_vE4T-DLTlF-AjFTtCofIkFHsQOKRZ/s1600/DSCF7001+2.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvIQn7IW7rxqFbjMZ58tHqoEv0QCzyNgDvOlQkWBUdLrYqjUilObNMy2Vd5I723VaHBAP4NIwxOtC_PQjKkKxd89fsNOAxq_60c3Pr1ZGWk_jHnJ_vE4T-DLTlF-AjFTtCofIkFHsQOKRZ/s200/DSCF7001+2.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrPWFmkexkXKVIxztgMWYyGLzqRrgA2X4WUtazJptnN0qLjVG2DnKr7QDB7TZ8IvJYHEbzitqo_4jlsLXez3FzzypwScDkL8r1pOxc_tWuhslOeamn0er9dDpof6iEd4EQGzQrlojc4G8h/s1600/DSCF7002.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrPWFmkexkXKVIxztgMWYyGLzqRrgA2X4WUtazJptnN0qLjVG2DnKr7QDB7TZ8IvJYHEbzitqo_4jlsLXez3FzzypwScDkL8r1pOxc_tWuhslOeamn0er9dDpof6iEd4EQGzQrlojc4G8h/s200/DSCF7002.JPG" width="200" /></a><br />
Mondays pictures are a little gross, but it is what it is.<br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-85803654143795224932012-12-13T02:08:00.000-08:002012-12-13T02:08:28.180-08:00Rest Day<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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......</span>Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-8631599090930516612012-12-09T21:25:00.001-08:002012-12-09T21:25:54.334-08:00Week 5 - Feeding Tube<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0MJh0-zt_5OcZ5nNRR3E7O8OqYgQtNX1U64gcXVjtNfg_tryDyqG82EqBvBLGPlqDTQ4neRMTLyPapflMIYnLxw5hIAfdrHIEULTH0O5mmJ0VgAecoMeS-_SpmfuWeNFQSoegwCiTZwkp/s1600/DSCF7001.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0MJh0-zt_5OcZ5nNRR3E7O8OqYgQtNX1U64gcXVjtNfg_tryDyqG82EqBvBLGPlqDTQ4neRMTLyPapflMIYnLxw5hIAfdrHIEULTH0O5mmJ0VgAecoMeS-_SpmfuWeNFQSoegwCiTZwkp/s200/DSCF7001.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg__SLk178HiLY5Zvaw_Usde33-P8Xaurw_3LsaB_tJxC84F1W1FITu0vWsmhe9RdqYQ4y1iGAnXTjXCtFtV9TmAeNnuOazJrcQhif64HFU0o2EQzrdkCK3hyphenhyphenzfLZJszhlWCmRcc4t9gkea/s1600/DSCF7003.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg__SLk178HiLY5Zvaw_Usde33-P8Xaurw_3LsaB_tJxC84F1W1FITu0vWsmhe9RdqYQ4y1iGAnXTjXCtFtV9TmAeNnuOazJrcQhif64HFU0o2EQzrdkCK3hyphenhyphenzfLZJszhlWCmRcc4t9gkea/s200/DSCF7003.JPG" width="150" /></a><span style="font-family: Trebuchet MS, sans-serif;"></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXDCyKXcPPduCH0dvvwOLpNIW12FrAx7S1aQ4JvNlQXtSlT7ZPxUR9DMW24Rlb__y6BW9tbDhtY0RJvxzIU6DxC3ctWZCbV5PXcqLvwPG_iIYQ85cEzXoKaWg2vkYhb9CYFiTCqJmfhRW7/s1600/DSCF7004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXDCyKXcPPduCH0dvvwOLpNIW12FrAx7S1aQ4JvNlQXtSlT7ZPxUR9DMW24Rlb__y6BW9tbDhtY0RJvxzIU6DxC3ctWZCbV5PXcqLvwPG_iIYQ85cEzXoKaWg2vkYhb9CYFiTCqJmfhRW7/s200/DSCF7004.JPG" width="150" /></a></div>
Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-35858790766905230362012-12-07T04:04:00.001-08:002012-12-07T04:04:48.601-08:00Bad to Worse<span style="font-family: Trebuchet MS, sans-serif;">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!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">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.</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-37326763731809223722012-12-03T04:45:00.000-08:002012-12-03T04:45:02.019-08:00Week 4<span style="font-family: Trebuchet MS, sans-serif;">Week four sees us almost to the half way point. We were feeling pretty buoyed after the weekend as the swelling and pain seemed to have subsided just a bit, but like most things along this journey we seemed to have underestimated the situation. After today's treatment, the pain in the mouth hit back a fresh with new raw spots, Karen's nose is bleeding more and the swelling is about the same. The Doctor has also increased Karen's daytime dosage of morphine. He said at this point it is all about managing and reducing her pain and to try and keep her as comfortable as possible. He said the side effects would continue to escalate for approximately another week before plateauing out until the end of treatment. Like on the eve of a prize fight, Karen has her weigh in tomorrow with the dietitian. We are desperately hoping she has maintained her weight and will be fighting fit! The incentive of having a nasal tube to eat has been a real motivator to down all the cans of goodness provided. As per the beginning of each week, I have included the week 1 compared to week 4 comparison. As you can see, there is now a definite red burn in the treatment area. A very neat line across her throat and up over her chin. Of all the side effects, although the most visual, this the least painful at this stage.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Week 1 Week 4</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0pumtYiXaEWlBY1dRAB4Smj56_DusCet3p6I7MlFL7vAwlyAxF5tfBRu6HsHUJHFk9C2QdcSbX0V9vTcAOsSJ-WYU_wEMQ2tLR6lbb8Jpl-7PSvFYY9SsDRO33dUvgrXaiNPPANjVR8VZ/s1600/DSCF7003.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0pumtYiXaEWlBY1dRAB4Smj56_DusCet3p6I7MlFL7vAwlyAxF5tfBRu6HsHUJHFk9C2QdcSbX0V9vTcAOsSJ-WYU_wEMQ2tLR6lbb8Jpl-7PSvFYY9SsDRO33dUvgrXaiNPPANjVR8VZ/s320/DSCF7003.JPG" width="240" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx9FXJM5BQGdV3Ic11iKCiQJ1uUxk1Bk04ohJInGgBv476qBCKtrtc633WZojKRh7Da5qGKb36B2QB6glB9HalZrxmQKjcfZLz4dx2ejkrHIX_FGzGkZPLN57EcUa0g755NWE9YItc6bSG/s1600/DSCF7001.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx9FXJM5BQGdV3Ic11iKCiQJ1uUxk1Bk04ohJInGgBv476qBCKtrtc633WZojKRh7Da5qGKb36B2QB6glB9HalZrxmQKjcfZLz4dx2ejkrHIX_FGzGkZPLN57EcUa0g755NWE9YItc6bSG/s320/DSCF7001.JPG" width="240" /></span></a><span style="font-family: Trebuchet MS, sans-serif;"><br /></span><br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com2tag:blogger.com,1999:blog-7802756503270203988.post-23599755448137684372012-11-30T15:50:00.002-08:002014-05-20T20:33:38.603-07:00Week's End<span style="font-family: Trebuchet MS, sans-serif;">Just a quick note to round off the week. It's Saturday morning and the boys have been up for a few hours. Karen is still asleep thanks to her new friend morphine. After yesterdays appointment, Dr Gowda has increased her night time dosage and hence the increased drowsiness. Apart from significantly reducing the pain, it does appear the swelling around her lips has reduced a little bit. The sun burn on the skin has increased though, with a very definite line of burn.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Eating continues to be the issue though. She has not had anything solid since Monday. So she has been surviving on sustagen infused smoothies and 4 tins a day of Ensure Plus, a complete liquid meal.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We were given the bottom line from the doctor yesterday as well. If she loses any more than 3.5kgs he will insist on a nasal feeding tube for the duration of the therapy. Reason being the body uses all the energy just trying to repair the radiotherapy site and it has been proven that weight loss at the same time reduces the effectiveness of the body to do this. So we are praying specifically that Karen will be able to maintain her current weight. It really is the "Bizarreo World", where the dietitian tells her to eat as much junk food as she can and don't worry about fruit and vegetables, the dentist said don't worry about brushing your teeth anymore and the doctor says don't lose any weight.</span><br />
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<i><b><br /></b></i>Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com1tag:blogger.com,1999:blog-7802756503270203988.post-4807374733088990362012-11-28T11:38:00.000-08:002014-05-20T20:33:14.120-07:00If You Have Poo, Fling it Now<span style="font-family: Trebuchet MS, sans-serif;">After an earlier than usual wake up and subsequent bottle feed for Nate, I find myself lying in bed wide awake with lots of thoughts whirling around in my head about the last couple of days. So thought I would get up and get a few of those thoughts out there. A quick recap of yesterdays RAH visit and treatment. We saw our oncologist who was very concerned with the side effects Karen is experiencing already. He said that in his 14 years experience, the symptoms Karen is displaying usually doesn't present until the end of next week. It appears she is one of the few people he has come across who has a sensitivity to radiotherapy. He was most concerned about the level of pain and swelling in and around the mouth and throat. He has upped the pain killers to 2 types of morphine for Karen to take. One is taken every 12 hours as a slow release pain killer while the other type is for pain spikes and to be used as often as we need at our discretion. As bad as it is, he wants to continue the therapy if at all possible. The other options if the level of discomfort increases, would be to stop the therapy for a period of time to allow Karen's body to recover to a point where they could continue on again. He and we are not a big fan of this option as it reduces the effectiveness of the treatment. We are very much of the mindset to keep on. We are a third of the way through and do not want to travel this ground again if we don't have to. The other option he said would be to admit Karen as an in-patient for the rest of the treatment to manage her pain. That too is also not appealing to us. So at this point we are all in agreement to continue on as we are, dosed up to the gills, with her face looking like she has french kissed a bee hive and try and make it through to the end. So each day continues to throw something new at us. Bit like the scene at Grand Central Station in Madagascar. One monkey saying to the other, "if you have any poo, fling it now." So with each new day we really don't know what to expect because things change so quickly.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">A few things that have really struck me about Karen and the treatment are, and in no particular order, How little I know about cancer and radiotherapy. I have mentioned before about having preconceived ideas about what the side effects for Karen would be like. I thought there would be some burning on the skin with some discomfort like a bad sunburn, a sore dry throat and some mouth ulcers. In hi insight, that would have to be the most naive expectation. I wont list the current side effects here now as it exhausting just thinking about it. To give it some perspective though, a line that I think most of us Fathers have heard at some point, "Pain! You don't know what pain is until you have had a baby." Well, Karen informed me yesterday that having a baby is a walk in the park compared to the pain and discomfort she is currently in.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The generosity of people continues to amaze us. We truly are blessed to have so many wonderful people praying for us and encouraging us. We have had so many offers of help in a real practical way, whether it be meals dropped off or kids dropped back home when therapy clashes with school pick up. We have been also helped financially with gift vouchers to cover our fortnightly grocery bills and also petrol. Our heart felt thanks to you all. Thank you seems so inadequate a response.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Finally this morning, about my wonderful wife. She is a "one". Special. Rare. She continues to wake up each new day, putting the previous days pain and disappointments behind her and attack the new day afresh. She does this with a will and determination I don't think I could muster. She does this with little complaint or if she does, its is with her usual feisty attitude and humour. Throughout all this she continues to laugh, giggle and be silly. I love my wife and she is truly amazing!!!!!</span><br />
<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com1tag:blogger.com,1999:blog-7802756503270203988.post-55465130926053112702012-11-25T21:46:00.001-08:002014-05-20T20:32:06.488-07:0011 of 33<span style="font-family: Trebuchet MS, sans-serif;">Today marks a third of the way through the radiotherapy treatment and the 28th of December can not come quick enough. I hate writing this blog with just more doom and gloom and increasing pain and discomfort. I wish I could say things have plateaued and settled and the pain management is working a treat, but I can't. Unfortunately things are getting worse and will continue to get worse for some weeks yet. The speed and ferocity at which the pain and discomfort has intensified is a little scary. Just in a matter of days it has really escalated. Karen has a purple patch for about 2 hours directly after taking pain killers and numbing mouth washes. After that, things deteriorate dramatically to a point where she is not able to speak or swallow without intense pain. She has quite bad swelling around the lips, in her mouth and tongue. This further complicates the actual radiotherapy procedure. Part of the mask she has to wear when strapped down to the table had to be altered around the mouth to accommodate the swelling so it still fitted without cutting into her face. She also has to have a (for want of a better word), putty ball placed in her mouth about the size of a golf ball. This is so her mouth, tongue and jaw are in the same position each time. Given her swelling, it is getting increasingly more difficult to actually open her mouth to then bite down on this ball. So another day of tears as every new day seems to bring with it a fresh set of challenges. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As terrible as this whole process is, there are certainly moments where we have been overwhelmed by people. Without going into detail, today Karen contacted her work to advise them she was not able to continue on as she thought she might and would not be returning until the new year. In turn Cedar College has been very generous in offering further assistance above and beyond anything we could of imagined. On the same day, my Centre Manager also contacted me to discuss an idea she had to also assist us greatly coming into the Christmas period. Again we were both overwhelmed by both offers. Anyone who knows a little about us know we don't often ask for help and try to manage things as best we can on our own. So a big thank you to both work places.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Please continue to pray for us and particularly for pain management for Karen. It really is much, much more than what we were expecting and as mentioned, only going to get worse for a period of time.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Again I have done a photo of week 3 as compared to week 1. It may not look like much, but you can just start to see the shiny red glow around the chin and neck and also the swelling around the lips and jaw line. Maybe I am looking to much into it, but I think a little bit of the sparkle in her eyes has gone too. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Week 1 Week 3</span><br />
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com1tag:blogger.com,1999:blog-7802756503270203988.post-83626770037215255782012-11-23T04:09:00.002-08:002014-05-20T20:30:21.495-07:00Exceeding Expectations<span style="font-family: Trebuchet MS, sans-serif;">Well as week 2 of radiotherapy draws to a close, our expectations of the side effects Karen is having now and to come, have been met and exceeded and not in a good way. We had been told at the end of last week that week 2 is where the rubber hits the road. The Oncology and Radiology Staff certainly don't sugar coat things and do tell it just like it is. We have joked about Karen's taste going haywire, but that is an understatement. We were under the impression, (our own), that things would just taste different or weird or even have a metallic taste. In reality though, the scenario is not that positive. On Tuesday night, Karen lost her taste completely. No recognition of any flavours at all. So although we joked around at the table having dinner, later Karen was quite distressed and upset that she has no taste. Could you imagine having a mouthful of food and only being able to feel texture, but absolutely no taste. Certainly takes the enjoyment out of eating. Really no incentive to get in and have a meal. She now has to modify her compliment to me. Instead of "thank you for the meal it was delicious" it goes more like, "thank you for preparing the meal". I still am struggling to get my head around this one, especially when food is such a comfort thing for us. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The pain has also increased tenfold this week. The area effected is from the bridge of the nose to the base of the neck. Although there is some tenderness and dryness of the skin around the wound site, the majority of pain is internal. She likens her throat feeling like she is in the middle of the worst cold. Oncology staff said to expect it to get sorer and likened it to having severe sun burn, but on the inside. It is excruciating when she sneezes and on occasions this draws blood. The inside of her mouth now is ulcerated with her teeth and gums being very sore and painful to brush. She has a magnitude of rinses to use every 2 hourly as part of keeping her mouth clean and managing the pain. She takes a liquid mouth wash local anaesthetic 15 minutes before each meal so she is</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">able to eat as the pain is getting to a point it is too hard to chew and swallow. She takes a soluble panadol every 4 hours and has been told that within the next week or so that be upgraded to morphine as the pain will increase. We also had an appointment with a dietitian today who went through the eats and don't eats. How's this. The first time ever that she has been told to eat as much junk food as she can and not to worry about fruit and vegetables too much and increase fats, cream, ice-cream, cheese. Basically anything to maintain her current weight. In theory it sounds great to get the green light from a health professional to eat all the "no no foods", but the horrible irony of it is that Karen cant taste any of it anyway. So all in all a pretty horrible and emotional day. Not a whole lot to look forward to as things will get worse substantially.</span><br />
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<b><span style="font-family: Trebuchet MS, sans-serif;">Praise Points</span></b><br />
<span style="font-family: Trebuchet MS, sans-serif;">Thank you to a wonderful couple who regularly come and visit with us, chat freely, laugh with us, make us feel normal and pray with us. It means so much to us and we look forward to your visits.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you to the wonderful staff at the RAH who continue to have a smile and a kind word on every visit and with whom nothing is to much trouble.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you for my beautiful and wonderful strong wife who even with all this happening to her continues to laugh and make our family love and laugh.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you to our church family at Klemzig Community Chapel. We are so blessed that God has directed our paths to this wonderful congregation. Thank you for the tangible and not so tangible help and encouragement and prayers you guys have given freely.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Thank you to Dad and Mum. For Dad who is doing a solo effort back in QLD while Mum helps us out in all the day to day stuff. </span>Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-18818819712010022142012-11-19T18:47:00.004-08:002012-11-19T18:47:54.056-08:00This Is The Week<span style="font-family: Trebuchet MS, sans-serif;">This is the week! We have been told by nursing staff, Head of Oncology and the Oral surgeon that by the end of this week of treatment, everything will come to a head, escalate, become apparent or fall in a heap. So we truck into week 2 with caution and trepidation. By week's end Karen's taste buds will be well and truly fritzed out! The mouth ulcers will come and it will be a case of just trying to manage them rather than trying to rid them. The pain in the mouth and throat will escalate to a point of requiring pain killers and the list goes on. As it turns out, (and I knew this already), I have a very special wife, in that she is already displaying many of these symptoms already. Clever girl. I have included in this blog a comparison photo of beginning week 1 to beginning week 2. The redness in the neck from week 2 is more a case of Karen's skin reacting to the Sorbolene Cream and rashing up on the effected area. I refer you back to my comment, I have a very special wife. We will be speaking with staff this afternoon about the reaction and hopefully move to a different moisturiser. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> Week 1 Week 2</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Outside of our daily trip into the RAH with times varying between 9.00am and 5.00pm our days roll on. Life hasn't stopped and we are stilling dealing with the everyday demands as before as best we can. Centrelink yesterday was a huge disappointment, having spent many hours on the phone with them, then collating all the required information, photo copying, GP appointment to fill in the medical report, assets test, then waiting in the office for 40 minutes to be seen. Finally we sat down with a consultant only to be told within 5 minutes that we will not qualify for any assistance. Could of told us this on the first call and saved us and them valuable time and energy. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Not feeling quite as dark as last Friday, but still, (as we both are), finding it hard to get too happy over anything at the moment. It sounds doom and gloom but being happy at the moment is just not the default setting. That's not to say there are not moments of laughter and the usual silliness in the house, but they get quickly consumed by what we are dealing with. Cancer certainly steals the joy!</span>Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com2tag:blogger.com,1999:blog-7802756503270203988.post-68274022501298861462012-11-16T02:57:00.000-08:002012-11-16T02:57:56.174-08:00Black Hole Sun Won't You Come And Wash Away The Rain <span style="font-family: Trebuchet MS, sans-serif;">Week 1 down and feeling pretty dark about the whole proceedings. Really hate what is happening and what it is doing to our family. A necessary evil? I will be stronger for this challenge? Really? Not feeling it at the moment. Was a lot more happy in my weakness. Those previous sayings just sound like meaningless cliches. It's right up there with people who say it's good luck if it rains on your wedding day. Again, really. Surely the only people who say and believe that are those who got rained on. Still, it was a fine day when we got married and look where we are now...maybe there is something in it.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Up until this week it felt like Karen and I were doing this together. Even though she has the cancer, we were in it together. However this week, I have felt us drifting apart. This is a hard one to try and explain. Not drifting in a loving relational sense, but more in a physical and emotional sense. She and I are obviously going through different things. In only 5 days, I have watched on helplessly as Karen's body starts to show the signs of radiotherapy. The redness around her neck is now visible. She has the start of sores around the bottom of her gums. She is very tired and usually sleeps the trip home in the car and then some more when we get home. We jokingly comment on facebook about the lack of saliva and her dry mouth and the use of an artificial lubricant, but the reality is this will be the case for the rest of her life. It absolutely kills me to see this happening and not be able to say or do anything to ease the situation. What do you say when someone comes out of radiotherapy session? "How did that go?", "Was it as bad as yesterday?", "That was quick", "Are you ok?" Sounds pathetic. So although I am there, I have no idea what Karen is going through, I have no idea how she feels, I just feel so totally separated. It is happening to her and I wish I could take her place. It really sucks!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">So on top of this, there is the Centrelink forms. Karen had a GP appointment this afternoon to have some medical forms filled out for Centrelink. Nothing like seeing in black and white terms and words and phrases about Karens cancer like, <i>terminal, outcome uncertain, high mortality rate</i>. So with these thoughts swirling around in my head we head into the weekend. A 2 day break of rest and recreation, (hahaha) before we start the process all again, all the same, next week and the following week and the week after that and so on. Looking forward to doing my laps at the Aquatic Centre tomorrow morning to try and wash some of this muck out of me through some exercise.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">For those of you who may not be into the music thing, the title of this post is from Soundgarden's Black Hole Sun. Cool band and song if not a little bleak, but does suite the occasion and the mood I am in.</span>Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-29526901174485444652012-11-14T02:52:00.002-08:002012-11-14T02:52:25.895-08:00Ground Hog DayI think you know where this one is going. Day 3 and not too many surprises. The treatment process is certainly a well oiled machine. We generally leave 45 minutes before our scheduled therapy. This gives us time to drive into town, find a park either in the Wilson Parking high rise or along the fence that borders the botanical gardens. There are 16 parks that have been reserved for Oncology patients and so far we have had no problems getting a park. We then check in with reception who confirms name and date of birth with Karen. If I ever forget Karen's birthday after this there is a problem. We get the following days appointment time confirmed as although we have a time schedule for the whole period, the day to day times will change at short notice. Once this is done, we make our way down to the treatment room waiting area. We exchange small chit chat with each other, check out the other competition for the day and politely nod to those we saw the previous day. Karen is then called and taken out back to be blasted whilst I wait in the....wait for it.....waiting room. I pray for Karen, then get out my Iphone and check Facebook. Once that is done, I go to the app game, Road Trip 2 and do my thing for 15 minutes or so. Karen comes out, we head back to reception, sign a form, head back to the car and head for home. I would have at a guess that day 4 through 33 will be much the same. So it is a bit like Ground Hog Day, but just without the fun bit of messing with people.<br />
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Todays quote is not from the Bible, but instead the book of Bon Jovi.<br />
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<span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">Ohhh, if there's one thing I hang onto,</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">That gets me through the night.</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">I ain't gonna do what I don't want to,</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">I'm gonna live my life.</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">Shining like a diamond, rolling with the dice,</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">Standing on the ledge, I show the wind how to fly.</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">When the world gets in my face,</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">I say, Have A Nice Day.</span><br style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;" /><span style="background-color: white; color: #676767; font-family: Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 21px; text-align: left;">Have A Nice Day.</span><br />
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-77580996869095920372012-11-12T03:29:00.004-08:002012-11-12T03:29:53.746-08:00Day 1<span style="font-family: Trebuchet MS, sans-serif;">Not really sure what to say about today. We have been waiting for so long for this day, (not in a good way like Christmas or a birthday), but more a day you just want to get to because the quicker it comes the quicker it is dealt with. So as much as we thought we were ready for it, having had to wait the almost 6 weeks and in our own minds preparing for it, how wrong we were. Nothing like being bitch slapped by reality to bring you to your senses in the here and now.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">With Nate being looked after by Mum, we drove into the RAH. Parked in the Wilson's car park. Yes we have free parking for the next 6 weeks. Thank goodness, as based on today if we were to pay we calculated that we would be out of pocket by around $400 by the end of the treatment. Everyone at the RAH was so friendly and helpful. That would be a hard gig to do day in, day out given the patients I saw wondering around. Potentially a morbid place, but that was not the case. After the necessary initial paperwork and confirmation at reception we then had a one on one with a nurse who, again just went through the process and what we were to expect short term and long term. This was then followed by the treatment. This involved Karen getting into her face mould, which was then anchored to the table which she was lying on. They then proceeded to take and confirm measurements to ensure she was positioned correctly. Everyone then left the room while the dosage was administered. This took all of about 10 minutes and we were all done. This will be our routine until after Christmas. We were advised today that the therapy had been extended by a further week to take us through until the 28th of December. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have included a number of photos. One is a front on face shot of Karen, which we will take weekly so we can record any skin reactions or burns over the period. The other 2 were of the mask and radiotherapy machine used. I will say as a side note that I was not very comfortable taking the photos. Karen wanted it to keep a record. It felt quite macabre to be taking photos of Karen like this.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I pray that each day it might become a little easier as we progress through this time. I pray that we might not burden Ryan, Matthew and Nate's hearts any more than we need to. I pray that as the head of my house, I might be a comfort to Karen and the boys and God will give me the right words to say and prompt me to take the right actions in his perfect timing. Ultimately, I pray that this treatment would be completely successful and rid this cancer from Karen. Amen.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"> </span>Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com2tag:blogger.com,1999:blog-7802756503270203988.post-12570219719679267482012-11-10T16:51:00.001-08:002012-11-10T16:55:39.592-08:00The Last SupperWell here we are on the eve of destruction. The destruction of wayward cells. Radiotherapy starts tomorrow after what seems an excruciating wait. Mum arrived on Friday and has already been busy helping around the house. In fact I feel a little guilty here blogging away while she tackles the family ironing, but there was no convincing her otherwise. We have been pretty quiet this weekend, contemplating next week and really not to sure what to expect.<br />
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We have been told there will be a whole range of side effects that Karen may get to varying degrees. The nature of radiotherapy is the destruction of cells in the effected area. It is non discriminate; that is, it will kill the cancer cells and also the healthy cells. The healthy cells being those lining the mouth and tongue including the taste buds. Fortunately this is not permanent, but we have been advised this can last several months after the treatment has finished. So before Karen's taste goes weird, we needed to bring in the ultimate of comfort food. Roast chicken with roast veg and gravy. Can't beat it. This was followed by a date and toffee pudding with ice cream. Yum!<br />
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So from tomorrow at 10am at the Royal Adelaide it all starts. I guess as a positive if I cook a really crappy meal one night I can off load it to Karen and it wont make any difference.Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-12484672662403236972012-11-06T15:17:00.002-08:002014-05-20T20:25:13.540-07:00It's About To Get Real<span style="font-family: Trebuchet MS, sans-serif;">So just over a month since we were told of the cancer and it is about to get very real. I have finished up work until the first week of December. This in part is because I was just not able to cope with the stresses of work and also what we are dealing with as a family. So I made the decision to finish up a couple of days early so I could concentrate my energies on more mindless tasks around the house. Although mindless, they are tasks that I feel are more helpful than being at work. I think I need to feel that I am helping in some way even if it is just around the house. The other reason is that I want to support Karen as much as possible with going to radiotherapy especially in the first weeks as we come to terms with the treatment and find our routine.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Up until now, at times it just hasn't seemed real. In the last four weeks although we have talked about it and shared lots of tears, a lot of times, I still am thinking, "is this really us, is this really happening". Still waiting to wake from the bad dream. So as the wait has gone on, the tears have dried up and the numbness has set in. Gone is the shock and unbelievable feelings and replaced with the numbness and fear of what is to come. Sometimes I feel like a little part of us has died inside. Maybe it is just in hibernation and come a new season will flourish once again. I think the start on therapy will bring with it the realisation that this is real. This is happening to us. This our next step. One that we willingly take as we want to see this season through and come to a new one. </span><br />
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Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0tag:blogger.com,1999:blog-7802756503270203988.post-29345613706521794632012-11-03T17:34:00.001-07:002014-05-20T20:23:54.077-07:00WaitngI know Karen has made mention in her blog of the waiting, but thought I would just touch on it as well. I know the wheels are in motion and the cancer therapy juggernaut and everything that goes with it will shortly have life breathed into it. To put it into perspective though, we were told on the 4th of October that Karen has cancer. From our perspective nothing of any real consequence has happened since then. Yes we have been to many doctor and specialist appointments in the interim, but in a real physical sense, nothing has changed since the 4th of October. My inner voice is screaming to move things along. Where is the sense of urgency! In my mind this monster in Karen is intensifying in strength and gathering speed and spreading to who knows where. My rational side tries to reason that this thing has been in Karen for probably quite some years, so whats another 6 weeks going to hurt. The reason given that we haven't been able to start radiation therapy is that Karen's wound needs to heal a bit more before they obliterate anything in that region again. So the 12th of November begins "D Day".<br />
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As most men are, we are the fixers. What's the problem, what do I have to do to resolve and fix this for you right now. We are not good at just listening and waiting. It is the most helpless and desperate I think I have ever felt. Seeing my wife and all her fears and anxiousness and not being able to do anything to make it better equates to a failure on my part. I know there is nothing I can do but that's the feeling. The waiting is a demon in its self. It is very hard not to dwell and entertain best and worse case scenarios and everything in between. So in short, I have been a bit of a mess over the last month. I am particularly hard on myself because I think this is the time that Karen really needs me to be strong for her and our family. An extra measure of guilt on top of everything else to deal with. Karen has commented that she has read that it is often more difficult for immediate family members than for the person who has it. I think there is some merit in that too. I am hoping that once the focus actually shifts to the daily radiation therapy, I will be the support Karen needs and she can lean on me. <br />
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<br />Anonymoushttp://www.blogger.com/profile/15519802167058247743noreply@blogger.com0