I love that... how many times have we felt we were coping with a certain illness/ issue in our lives and that our coping brought us just to an acceptance without any effort on our parts to make efforts to bring around change. So many of us look at a majic pill to loose weight, a majic new type of equipment to get us and keep us exercising, an answer that is readily simple without accepting that actually doing any work to affect some change. I find people that put on a brave front and are smiling and joking around but it is alot like paint on a car, covering the rust underneath that keeps eating away at the main structure. Sorting this all out to find a path of comfort is not easy. Often, I see people leaving with an overload of information and heading home to make decisions that seems beyond their capabilities. I remember those words to me a few years back , "go home and decide if you want a lumpectomy or a mastectomy." Really, my choice? I choose none of the above! Patients do want to take part in their care and often start researching on the internet to find an overabundance of material that one article may slant one way , and another -another way. I often warn to stay off the internet or better yet go to only well known, reputable sites. Know that you are an important part of your health team, know your other members and take a book, write down your questions ahead of time and fill in the answers. Also know who to listen to and who not to listen to. Everyone has their story and you can actually listen to too many people and the waters get even muddier. It is like childbirth, everyone has their story and viewpoint and they are all different which doesn't make it all right or all wrong. Filter your information as you need it. The hard part is maintaining a healthy balance for you between what is real and what is cautious optimism and remember hopeless accepatnce is not a form of coping. Take notes, ask for book recommendations, and remember that the web is not always a trustworthy source as it is educational or commercial and are the links appropriate to the site. Keeping track of what you need and want to know is a positive measure to coping. Listen to what is being said. Have a family member go with you to take notes so that you can focus on entirely what is being said. I often sit in and take notes so that families can listen and then they will have a written copy to review after they get home and think about the appointment they just left. Coping is not just living with a problem whether you like it of not but it does mean managing the problem and finding ways to take control of it. You have the control in how to react and live with cancer just as you can Make it a good day! S
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Sure felt like fall this morning and dark getting up, that is a tough one for me! I like the sunshine. Sunday was an ordination of a friend of mine and to now call her Reverend Dr. just seems a bit difficult as yet. She worked hard to get there and had a great career before and this is now her second career. I admire her for that. Although I have had various positions in my life, I have always been a nurse. I started as a candy striper and then a nurse's aide and graduated from nursing school in 1972. Wow, that is forever ago. The nursing I did back then is so different than now at least for duty on the floors. I am afforded the opportunity and it is part of my job to know you as a patient so that I can help you in your treatment and transition. Yes, we share stories and happenings and sometimes laugh and sometimes cry. Last week, one morning we were sharing tongue twisters and other times I listen to the concerns you have on this day and moment of time. I work with radiation, chemotherapy and social services, psychology support, support groups, nutritionists, and of course the doctors. I will call to check on you and your day and will meet you for appointments and take notes of the visit if you need. I will help you with wigs and makeup and talk to you about what you can do to be an active part of this process. Having said all this, I know there is more to do and more to find out and more ways to help. So when you ask what I do, it is most everything depending on the day and the need. I do also stop to see you at the hospital if I am in the area and give education and presentations in the communities. I have made so many friends along the way and you have added to my life more than anything I could do for you. I carry you in my heart and in my prayers. Cancer isn't just a disease, it is a whole process that affects not only your body and your mind and with that comes the whole body approach to help in all aspects of your care. It is the connection to another person that may make the difference on how you meet each day. We all need that love and support and acceptance and knowing you are important to someone else that can get you through the day. If you don't or can't reach out, I will continue to try to find ways to meet you and walk beside you during this trial. You are not alone, we are here to help and I look forward to getting to know you better. So I am gearing up for another full week and after a moment to talk to you and my higher power, the day begins. Make it a great day and reach out to someone along the way... you will reap the benefits ten fold. S
I often recommend programs to patients that I feel are reputable and important and today is one of those times. The workshop is on Friday, October 7 from 1;30-2:30 pm and sponsored through Cancer Care. The site is: www.cancercare.org or you can call : 1:800-813-HOPE(4673). This workshop will deal with Caring for Your Bones When You Have Breast Cancer. They will discuss: Bone Loss, Screening for Bone Health and Risk Facots, Medications to promote bone health and the role of Nutrition, Exercise and Calcium Supplements as well as Controlling Pain and Clinical Trials and more. You can call to register or do it online and then will receive further information regarding this workshop. It is free and is in user friendly language. If you have any further questions regarding this, you can email: [email protected].
Having said this, I now just want to say TGIF. I am thankful it is Friday as it has been a hectic week. I am ramping up for Breast Cancer Awareness month in October so keep checking and see what is in store and if you have any suggestions, feel free to contact me at the Institute. Wishing you a great weekend! S Well, I spent yesterday afternoon talking to people about self breast exam, mammograms, early detection, and breast cancer. I ate one hot dog and some kettle corn. All in all-it was a good day! I was amazed by how few people I actually knew. I avoided some hazardous droppings which was a miracle as I carted my big pink basket around and was relieved that it got lighter as I passed things out and moved through the people. I worked many summers cooking and selling hot sausage sandwiches so that does not have much appeal to me. I love the dairy- ice cream place as that is the best deal going but since milk and I are no longer amicable friends and I prefer my bathroom at home, I avoided that stand with deep regret. It is interesting to see the people at the fair. I love the pigs ( the babies), horses, and goats (cows from a distance). I actually took dinner home ( a sausage sandwich to my husband and a pulled pork for me). From five on, it was impossible to get in our out of my drive and of course we only have to sit on our porch to hear the concert. I am so glad that they no longer have helicopter rides as that was very disconcerting to go out with your dogs and right above the tree line, see a helicopter hovering over your property and of course watching what you were doing. Our hot tub nights were limited during those times. The hot tub is gone, and the fair goes on. The new barn looked great and it is hard to imagine how many hands it takes to get that whole event up and running and functioning the entire fair time. It reminds me of my treatment and how many unknown hands were involved in my care and getting me where I am today. I obviously could not get cookies and treats to everyone on the long list because I was truly unaware of everyone involved. So today, I send thanks to all the unsung heroes in the medical field that each day walk the extra mile so that I could transition through yours and my health crises in the least interrupted way. Thanks for taking my chart and directing it to those that needed it, and those of you that did the tests and then ran them and took my blood and processed them and handled my insurance issues so that the process seemed flawless and provided hands on care and those that held my hand as I went to sleep before my surgery in an otherwise scarey environment. There are many more that I can't even begin to thank or realize were involved, I thank you. Although as a medical professional you don't do these things for thank you's, you rarely hear the positives coming from patients, it is more like the paper and we hear more about the bad things that happen than the good. I am proud to work in an establishment that stands for caring, and comfort, and reassurance, and making the walk with your illness the easiest transition that is possible and providing for our patients needs . I do hear how comforting it is to be here at the institute and thank you's are given. Having been involved in both sides,So I again offer you my hand, if you need help and even if I didn't see you at the fair, I am willing to help. Give me a call and I will listen.
I was off on Friday and came back yesterday and worked all day to get onto this site and was unable to so there was nothing new when you got on. That is not to say I have nothing to tell you as I always seem to find something. First off, the fair is on and if you see a lady in pink running around with a pink basket and talking about breast cancer ,come up and say HI. It is me and I try to get up there and talk with people and share education and stories and mostly listen. I listen to the questions and stories others have to bring to me that need heard and addressed. I hope you do take a moment to say Hi and let me know that you are checking out my blog once in awhile.
Next, we are fastly approaching October- which is Breast Cancer Awareness Month and not only is there the Making Strides Against Breast Cancer Walk on October 1st in Erie at Perry Square but also St. John's Missionary Baptist Church providing a breakfast seminar on breast cancer and I will be speaking at that on October 22nd at the Lew Davies Community Center and pre-registration is appreciated and you can do so by calling (814)336-2965. October 28th, will find the CHIC/SHIP Symposium at Allegheny College and the focus will be on community needs related to Cancer, Heart Disease and Obesity. Flyers will be out soon as well as posters and where to pre-register. I will see you there as well. The rest of the dates for October are rapidly filling in. September as well. September 8th from 12-7 pm and on the 9th from 9-3 at the Wellness Extension in Meadville is a Wellness Fair. September 16th at Allegheny College is the Allegheny College Health Fair. On September 22nd from 10-2 there is a Senior Expo in Edinboro at Our Lady of the Lake Church on Sunset drive and it is free to the public. A senior project by Brianne Lenhart will be a fundraiser for the Meadville Rotary Club Community Grant which will be at Wesbury,Cribbs residential center in Meadville on Tuesday,September 27 from 6-8 pm which will be an evening of education on financial wellness, emergency wellness, mental wellness, physical wellness, nutrition wellness, medical wellness, beauty wellness and social wellness. Needless to say, you know where to find me in the near future! Well, I need to get back to my daily chores and will be looking for you at the fair. If my husband is with me, look for me at the apple dumpling booth, pie booth, fries, and sausage and last stop before we leave is the ice cream. I just take my tums and watch him eat. Enjoy the day! S Making Strides Against Breast Cancer Kick Off August 18th, 2011
My experience with cancer does start with breast cancer. My experience actually started with my grandmother who had a mastectomy back in the early 50’s and I remember the sleeve we had to blow up on her arm each night due to lymphedema. She lived well and a full life after this, leaving this world in her mid 80’s. My next experience with cancer was my dad with lung cancer at the age of 69 and not too far into his retirement and another grandmother with stomach cancer. This was actually my beginning with ACS when I started to volunteer , worked on committees and fundraisers, and became a board member, The Nurse of Hope, and worked to help raise monies that in turn would help improve outcomes for the future and for my family dealing with issues related to cancer. Many early morning hours, when all was quiet, Dad and I would actually talk about how the face of cancer and cancer treatment would change in years to come. That is what research does… there are new treatments, methods, interventions, testing that is coming out weekly. There is hope and because of all the great strides we have made against breast cancer and all cancers. Which now brings me to my diagnosis 6 years ago, I was not overly concerned when after a routine mammogram they asked me to come back for further testing. Needless to say that was not the first time that I had faced that request as my tissue is much like grandma’s gravy- lumpy and bumpy because I am fibrocystic. The doctor telling me after the biopsy that I had cancer and a former student of mine that was the nurse in the room at the time, holding my hand and crying – well the diagnosis then hit me like a ton of bricks. Life became appointments and tests and treatments and travel. I was unable to get treatment in Meadville at the time since this facility was non-existent then and the hospital /oncologists were in transition and in fact when it came time for radiation, the availability was not in Meadville either and travel was either to Sandy Lake or Erie. ACS helped with finances for all that travel back and forth and some monies went to a wig that I learned how to take care of and how to look your best and how that can actually make you feel better. This program is called Look Good Feel Better and is a program that I now sign patients up for. Patients come and learn how to put on make-up, wear scarves, and buy and care for wigs with a group of women all in different stages of their treatment and the comraderie and laughs are hard to compare to anything else. This is a high point in a calendar filled with fears and uncertainty and trepidation. I now refer patients to these programs and try to open up the door to the availability of help through education, resources, and finances. Often when I speak and do programs in the community, I ask how many of us are or have been affected by cancer and there is almost consistently- most if not all hands in the room go up. I am a mother of five and I continue to be a mother of five. Breast cancer does not define me and I never asked why me, because why not me? Everyone in this room has something that is causing them difficulty in their lives whether it is health, finances and so many other things. I used to laugh as my husband always said to the kids as they went out the door to Make It A GOOD DAY. Under- my breath I was all but cursing him as he got in his nice car, in a suit and smiling-off he drove to work as I loaded the kids in my car and frantically got their lunches or lunch money, back packs, instruments, sports equipment loaded in the car and faced the trip to drop them off as I headed to work and often retraced back to the house to pick up what was forgotten or needed. I would laugh and say- sure you make it a good day, you can walk out this door and you don’t have to deal with all the issues I do to get out the door and then one day the light bulb went on and I realized we all have a choice. We can choose to make it a good day or not. Every morning you get up, things happen-Good and bad before you even get out the door. Your favorite blouse is missing that you planned on wearing, you got summoned to jury duty, you have a meeting with your boss, you just spilled coffee on your lap ( and no I am not going to sue as I was the silly one that put it in my lap in the first place) and these may be actually little things in the scope of things you may be facing with much bigger issues. DEALING with Breast Cancer is one of those issues. How can I help make it a good day for those facing the battle? We have come so far and changes are happening. All this leading to me making the choice to make the day great and one of my promises each day is to reach out in some way and help someone else. Whether or not that is acknowledged, doesn’t matter! I know I have made it a great day. Through Making Strides Against Breast Cancer we have waged a war that I believe can be won and also helped those dealing with the struggles of dealing with the disease. It takes each one of us to reach out and help others to make this crazy world a better place and what better place to start than by being CHAMPIONS IN THE FIGHT AGAINST BREAST CANCER. NOW, I take each day as it comes and have learned that my life and my priorities have changed, for the better. I ask you now to join me in the fight against breast cancer and make it a great day for others and for you! S What They Do (CASTING FOR RECOVERY)
A Casting for Recovery weekend is about empowerment Knowing little about fly fishing, women learn the basics while experiencing a spirit of trust and sharing that cannot be put into words. Participating at your own comfort level, you will find new strength, joy, and confidence, leaving the retreat with a belief in your ability to master the challenges ahead. The Casting for Recovery program has generated a wide circle of survivors whose new-found understanding and enthusiasm creates ripples outward in their communities, among their friends, families, and colleagues, helping improve the quality of their lives. We provide an opportunity for women whose lives have been profoundly affected by the disease to gather in a natural setting and learn the sport of fly fishing. Just as importantly, the retreats offer an opportunity to meet new friends, network, exchange information, and have fun. Our weekend retreats incorporate counseling, educational services, and the trained facilitators that staff each retreat, including a psycho-social therapist, a health care professional (e.g. physical therapist, nurse), as well as fly-fishing instructors and river helpers. While the fundraising burden of offering healing retreats at no cost to participants and asking volunteers to run state programs is enormous, Casting for Recovery has inspired the generous and loyal support of donors large and small, and continues to believe in its mission of providing women with powerful tools for healing at no expense to them. I just found a new site that might be interesting to some of you. It is called StringsforaCure , founded by Elisa Guida a professional jeweler and two time breast cancer survivor. Elisa transforms professional musicians' used guitar strings into one-of- a-kind jewelry. Net proceeds from jewerly salees fund the foundation's efforts to educate, comfort and support cancer patients, primarily those with breast cancer. As a patient looking for uspport you are eligible to receive 2 gift cards in each of 2 successive 12 month periods. Gift cards can be either Gasoline, Grocery, or pharmacy.
On the othe side of news. My granddaughter had a roaring successfull birthday party at the zoo with parents, grandparents, friends and kids all over the place. My daughter-in-law and her mother decorated the most elaborate animal cupcakes you could ever find. They were far too cute to eat but eat they did, the kids that is. My Sarah was blue from stem to stern from the icing. Her grandmother that has her two days a week is more than gracious when I come to encourage Sarah to come to me and spend time with "GrammyK" and she does. It was well worth the 8 hours of driving on one day. We got her a bastketball set and she knew right away what to do and even took the ball to bed with her when she took a nap so that she didn't have to share it. We had a great time and I must say having kids and grandkids, keeps you moving and motivated. Sunday seemed quite and pale in comparison. Today will have me at the Senior Center and planning a cancer seminar for the fall. All in all, making it a great day. S Why is it you take a week off and the next week you work double time? I have not regained my good sleep habits and have been burning the candle at both ends. The fall is fastly approaching and with it the calendar is filling up. Close to putting my white clothes and shoes away and getting into some warmer and longer pants and other clothes. I came out of the theatre last night and was freezing. My friends and myself attended THE HELP and if you haven't read the book or if you have ....it is a great movie. The tears were flowing and that can often been a good release when other issues in your life are buidling up and you can just let the dam go. I often tell patients that I understand the front that they put up for others,being strong, pushing to meet others expectations. I also tell them that quality of time means making every minute count and saying and doing the things you want or need to do and laugh and cry as much as you can. Shouldn't that be what all of us should do anytime of our lives, seizing the moment and making the best of each day? Life is a gift and the coming and goind of it is as well. I often thing of the FOOTPRINTS in the sand as we all have those days that the burden seems to much to bare, but knowing that there is a powerful source guiding and supporting you is vital. I recently had friends that had the passing of their father and I said in those last moments to continue to hold his hand and talk to him and tell him all the things you want to say as he did when you were little and unable to communicate. We all need and feel that kind of love. There is a void when both your parents are gone and with it that unconditional love that they have for you and now you are then next batter up to the plate to carry that on with your children and friends and family. Hmmms, sounds like I should be singing some uplifting song but my focus is to try to make the day better at least for one person each day and more is better and to share my love in whatever form it needs in that day. I don't know why but I am always amazed how on that day of need, the right person, the right words, the right hug comes through and often times from somewhere you least expect it. So your mission today is to Make it a great day for someone else and I guarantee you will feel better in the end and reap the bigger reward. Love to all and make it great! S
Just in case you have not heard of this great site, I have listed it above. Caring Bridge is a link to others as you are going through treatment or for your caregivers to update others. Those phone calls from those that care about you may be difficult and time consuming during your treatment time and this site will let you update as needed and others can access it and find out what is the current status of you/ or the patient. I just got off the site after looking and reading about how a friend is doing at this stage in a cancer battle. Pictures can be added and tributes and donations to help fund the site and keep it open so others can hear the most recent updates. It is a good way to communicate and stay in touch and isn't that what is needed when you are dealing with all the ups and downs of cancer? I know when I was going through treatment, I didn't have the energy to be on the phone but I loved to hear from others. My husband become my assistant and fielded all the calls. On any doctor visit day, calls would go to all five kids, sister, sisters- in- laws, brothers, brothers-in-law, nieces and nephews , mother-in-law and father-in-law past and present, friends and so many more. I am tired just making the list. I was happy to know people called and cared but I could barely push through it all and adding phone calls was something that was far too consuming at the time. Take a moment and look at Caring Bridge and see if you don't know someone that could appreciate that connection. Hope and health to you all and it has been a great day! Off to see THE HELP.... s
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AuthorMy name is Sue Kilburn and I am a clinical nurse breast cancer educator at the Yolanda G. Barco Oncology Institute in Meadville, Pennsylvania. Archives
March 2015
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