tag:blogger.com,1999:blog-4276144047875207536.post3775021155054070115..comments2024-03-05T09:15:20.761+11:00Comments on Inkspirational Designs: Decisions, Decisions, DecisionsMichellehttp://www.blogger.com/profile/08043171190520380845noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4276144047875207536.post-9160070634063860612015-12-04T07:11:28.502+11:002015-12-04T07:11:28.502+11:00Just thought I would add yet another postscript: I...Just thought I would add yet another postscript: I did NOT go ahead with the radiation after all. The side effects esp the possibility of losing my hearing freaked me out too much. I decided to take my chances however I made a promise that I would really consider the possibility of radiation if it comes back which apparently is highly likely with this type of cancer. One never goes "into remission" with ACC. It is now 2 years since I was first diagnosed and 8 operations later, (including 4 for unrelated kidney stones). I am expected to have regular 3 monthly checkups with my specialist and yearly MRI's which has been impossible until just recently when I finally had my cochlear replaced with a MedEl brand of cochlear which is 'MRI friendly'. I have learnt to live with the uncertainty. I have a few things I have to deal with since then: Fatigue not every day but certainly several times a week. I suffer more frequent headaches. Also I can not sleep flat usually requiring 3 pillows with the odd nights when I can't breathe laying down at all so I sleep in my recliner chair. I also have occasional nights of insomnia. I rarely can smell and that obviously affects my sense of taste. Still I have a life that I mostly enjoy. I have new friends and my husband and adult children are very supportive. I have much to be thankful for.Michellehttps://www.blogger.com/profile/08043171190520380845noreply@blogger.comtag:blogger.com,1999:blog-4276144047875207536.post-17316198124925544652013-12-31T02:24:01.690+11:002013-12-31T02:24:01.690+11:00Thank you for your support Ann. As I just mentione...Thank you for your support Ann. As I just mentioned to Teresa, I have just found a ACC Support Group. I had breast cancer just over 2 years ago but the 2 are totally not related. I was just unlucky enough to be hit twice! I have made a decision to go ahead with the radiation and now that I decision has been made I am at peace once again. Making the decision was the hardest part! What my hubby suggested was to postpone the radiation for 4 weeks to allow my body (head) to recover from the 2 recent surgeries as they have really knocked me around. We are going to use the time to travel in our caravan trailer as soon as possible.Michellehttps://www.blogger.com/profile/08043171190520380845noreply@blogger.comtag:blogger.com,1999:blog-4276144047875207536.post-5315639068803312172013-12-31T02:19:14.653+11:002013-12-31T02:19:14.653+11:00Thank you for your encouragement. I started to go ...Thank you for your encouragement. I started to go back to the beginning of your blog to read of your ACC journey, but didn't get far. (too tired) but I have bookmarked it for future reading. I have just found a Australian Support group and joined them. It is nice to know I have others I can rely on. (PS I used to be a Library Technician way back yonder!)Michellehttps://www.blogger.com/profile/08043171190520380845noreply@blogger.comtag:blogger.com,1999:blog-4276144047875207536.post-23891243099653327882013-12-30T15:25:39.268+11:002013-12-30T15:25:39.268+11:00I just came across your blog and wanted to wish yo...I just came across your blog and wanted to wish you the best of luck in your decision. I have end-stage cancer myself (breast that has spread to the liver) and the decisions we have to make are often very difficult. The only radiation I had was Gamma Knife radiation to try to stop some liver tumors, which is highly targeted and not what you will be facing, I don't think, but it went well. We still don't know and with breast cancer, it won't be permanent, but it could give me more time. <br /><br />My only advice is that you do as much research as you can, talk to everybody you can and make your decision based on everything you come up with so that whatever happens - whether you have the rads and lose your hearing, or don't and end up with spread - you know you did the best you could. Do NOT let anybody rush you into it because of something like schedules or a cancer center's convenience or something like that. You deserve and have the right to make a good decision or yourself. <br /><br />Best to you.Ann aka ButDoctorIHatePinkhttps://www.blogger.com/profile/06952736107114454660noreply@blogger.comtag:blogger.com,1999:blog-4276144047875207536.post-73911979399697234822013-12-28T14:19:22.110+11:002013-12-28T14:19:22.110+11:00Sending you every good wish I can during your deci...Sending you every good wish I can during your decision time. I was diagnosed with ACC in 2006, and went through surgery and radiation. They still watch me for cataracts - none yet. The extra fluid on my ear due to the radiation eased off without causing permanent damage to my hearing. I have written about my personal treatment stories, and linked to more information about ACC on my blog: http://cheekylibrarian.blogspot.com . Please let me know if I can get you in contact with a medical librarian to help you search further in the biomedical information than Google. Teresa Hartmanhttps://www.blogger.com/profile/16819137357040314260noreply@blogger.comtag:blogger.com,1999:blog-4276144047875207536.post-10428022690974006792013-12-26T19:44:02.063+11:002013-12-26T19:44:02.063+11:00Thank you Merry. Yes, it is a rotten position to b...Thank you Merry. Yes, it is a rotten position to be in at the moment. Did you find your explosion cards? Were you after instructions or samples? I might have some in computer storage somewhere. I only have the boxes on this site at this stage.Michellehttps://www.blogger.com/profile/08043171190520380845noreply@blogger.comtag:blogger.com,1999:blog-4276144047875207536.post-19931968789518491492013-12-26T07:54:29.129+11:002013-12-26T07:54:29.129+11:00What a huge time you are going through. I just fo...What a huge time you are going through. I just found your blog as I was searching for Explosion Cards. Then saw you were an Aussie so thought I would have more of a look at what you create. Before I go I just have to wish you every success with your choices. Lovely cards by the way.Merryhttps://www.blogger.com/profile/11955986321787501169noreply@blogger.com