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As most of you know, I have been off and recovering from a proceedure. All is well and returning to normal. I have started back to work today and my desk is piled high. I did maintain phone contact with many of the patients that I work with and continued in many of my projects from home. As I am sure you are also aware that October starts Breast Cancer Awareness month and I am anxious, excited, and energized to get this moving and off the ground. I have lots scheduled and ready to initiate and I will update you shortly with those activities that you may find of interest. I am also aware that some of us are sick of pink but it is a recognition by all and has helped to fund many of the activities and research that helps to improve outcomes for those of us that have or had breast cancer. So my motto, is on with the pink as many of you know, I do most anything to bring light, understanding, and laughter in dealing with this demon and I am armed and ready for this month to begin. I hope to see you in my travels and will update you with more soon. Just wanted to say that I am sorry I was out of the loop for a couple of weeks. Make it a great day!
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What a wild and crazy week! Monday night I joined Ron's ball team for dinner at Uncle Charlie's in Edinboro, Tuesday I attended an Amish Picnic and then Wednesday, I went to my sister's for dinner and then to the Looking Ahead Breast Cancer Support Group. Tonight it is cleaning and laundry and change the sheets and then I will be off of work for two weeks. When I get back it will be Breast Cancer Awareness month and we will have survivor signs, pink link jewelry made here by patients, we will have The Make Strides walk in Erie on October 1st and the St John Baptist Missionary Church weekend on the 21st which includes me speaking at the breakfast on Saturday morning and is open to all but needed reservations that you can make by calling the Church at 814-336-2965. I have so much to finish up and take care of before I walk out this door but rest assured I will keep in touch with all of you via Weebly. I can actually track the number of people that check in on any given day. Those numbers become part of my log as well as giving me a clue as to what interests you in the blog. I have been running around trying to get things done so that things keep moving forward while I am gone. I am not so self important to think someone else can not follow up but I don't want to burden anyone else with my added duties. I have folders of materials ready and a calendar for everything to come. I am hoping I didn't forget something but I am sure that I have and will probably remember sometime between 2 -4 am tomorrow morning. OH well, I tried!
Please continue to check in and know I appreciate your support and I will try to keep updated on this and include important and relevant info as I can. One more challenge ahead and then on we go. My husband continues to support and care and is my guiding ship. The fact that I have to slow down to a lower gear for a few days will be the hardest thing for me to endure as I am often quoted as saying I have two gears-- all go or nothing at all. In the meantime... make it a great day. S Wow, boy is that a loaded question! I often find that I am talking to a patient very shortly after they receive the diagnosis of breast cancer and they are reeling. They are on information overload and the misconceptions of what is next is drowning every thought process they have. It is often difficult for families to know what to say at this time and I find I walk into a silent room with tears flowing from those sitting their awaiting my entrance. First and foremost.... LISTEN. We often want to rush in and fix things, saying things like," it will be fine!" You may hear things like, " Am I going to die,and more disparaging thoughts." LISTEN, yes, LISTEN. I may acknowlege their feelings by saying something like, "I see how upsetting this is, or it must be so frustrating to suddenly have this diagnosis." Recognizing where they are at that moment in time and allowing them to vent is the most important thing you can do. This is not something you can fix but something you can help them get through. Your advice is not needed unless they ask for it and getting yourself informed and educated from reputable organizations is key. Whatever decision that is chosen, support them in their choices. This is not just a physical treatment, it is mind and body and we must consider all the aspects and ramifications of what having breast cancer means. I have met many women who are devastated by the thought of losing their hair, I for one did not have any great dread as it is only hair in my estimation and it doesn't define me nor did it affect me in my choices. A big one that is often forgotten is the caregiver and the needs that they have. They are the go to person, the one that takes the patient to all the appointments and treatment and all the related tasks as well as emotional support and often are lost in the mix of this all. Give them time to vent and again LISTEN! Try to help this family maintain what normalcy that you can also also keep in touch as well as offerring specific help. Don't just offer, " call me with whatever you need." Tell them I am bringing Chicken Parmesan over on Thursday night at 6 and I will run the sweeper and do a load of laundry while I am there. Do you have anything you need me to pick up at the store on my way over? Also the last bit of advice is when treatment is over, there is a new normal and life is not the same. The focus has changed and some of those bothersome appointments and support is gone and now to find what you are and your life and your partner's life is, may lead to some concerns. Finally, use your health team to meet your needs, answer your questions, and listen to you. We are here to help! Remember today as always -TO MAKE IT A GREAT DAY!
S Many of us experience pain throughout the day or during our treatment and after and one of the hardest things as a medical professional is to understand the depth of the pain that a patient is presenting with. I can look for verbal clues and non-verbal but I need to hear your describe your pain and many of us do not have the tools to adequately talk about what the pain is. One of the most common things we ask patients to say about their pain is the intensity of the pain, on a scale of one to ten and ten being the worst possible pain, what is your pain now? Does you pain get worse at night or in the day and describe the pain, is it dull, stabbing, tinglingg, burning, throbbing, aching, sharp? Is it constant or does it come and go and does it get worse with activity or when you eat ? Does it limit what you do each day and how? What do you do to relieve this pain? Is what you are doing effective? Does this affect your mood, your quality of life, your sleep? Without clues to what is happening you may not adequately describe what you are going through. We need your input to adequately evaluate and treat your pain. Not everyone has the same level of pain tolerance and you have to work with your support team to get you best outcome. This doesn't just have to do with Cancer pain, this can be headache pain, or back pain, or whatever type of pain you are feeling. Knowing that these adjectives and the scale with your description can help us on our way to meeting your needs is a vital tool for you now and in the future. We all know that without sleep and having pain, we are less able to cope with the needs and challenges of each day. Our emotions are heightened and our patience is lessened and it pulls us deeper and deeper to a place that no one enjoys. So my thought for the day is, if you are experiencing continuing or recurring pain, it is time to address it and get answers and help. Through education, expert advice, and strategies, as professionals we can make it a better day. S
As I woke up this morning and felt the cold, dark morning air, I got a little boost as I remembered I will be flying to see my daughter in Florida for the weekend and back for work on Monday. The temperature is predicted to be in the high 80's and so although I got my flannel pj's out (in Meadville), I can go back to my summer nighty while I am there. Tomorrow I will be at the Wellness Extension for a Health Fair and then on my way. Next week will be equally busy as I will then be out of the office for a short bit but I will continue to be in touch. Making Strides Against Breast Cancer Walk will be in Perry Square on October 1st so for anyone that wants to contribute, our team is YGBOI and for anyone that wants to walk, hope to see you there. The monies raised in Crawford County will stay in Crawford County. Also coming up is St. John Missionary Baptist Church has their breakfast seminar on October 22nd at the Lew Davies Community Center and you can register by calling (814)336-2965. There is also the Fall Chic/Ship symposium on October 28th and more to come on that. I thought summer went fast, where is the fall going? I just wanted to touch base and let you know I will be adding and checking in and don't loose faith. I am here and will get some information and updates to you soon. So while you are looking for your flannels, I will be thinking of you as I sit by the pool in Florida. It will be a great day! s
Well, that was an interesting weekend to say the least! The weather the least of it but it was nice to have a break. I will be heading out to Florida to visit my daughter this week and I am sure I will have interesting stories to tell. This past weekend one of my son's visited the other and they decided to go sky diving and waited to tell me till it was over. I was thankful but not sure how I would have handled it ahead of time and if I could have been calm and sane if I had known. I am glad those two don't have many opportunities to get together as they are my two risk takers for sure. One son is going to be working overseas and one just came back so household items were being passed from one to the other. Then a frantic phone call from FL and car problems yet again for my daughter and she is just finishing moving into another apartment so we listented and directed on that one. I also was a good daughter-in-law and had my in-laws in for the day as well as two friends up early in the weekend. Just having looked at this, I now see why I was tired yesterday and mostly good for nothing. Time to start packing for the trip. Since it has dropped so cold here from blistering heat to flannels, I will have to do some juggling with clothes items,
I often see patients that are here every day for treatment striking up support and friendships from patients in similar situations and just to have a listening ear and understanding of what one is going through is often the most substantial thing you can give anyone including my daughter and listening about her car problems. I discuss with those same patients as they count down their treatments that as much as you can't wait for it to be over, you will find that when the time comes that you are finished that there is a void that appears and you never anticipated. The loss of someone listening and understanding and coming from a point of recognition is something of tremendous value. It just puts you back into a void that you didn't anticipate. You counted down the days and couldn't wait till it was over and now you are back to your normal life, whatever that is! The new normal, without daily appointments and back to fixing meals,catching up on your cleaning, and back to cooking as the casseroles disappear. You are not alone though, there are support groups out there and it does help to vent some of your issues and concerns. Most people state that a support group is not for them but if they come once or twice and start to see the connections that we share in common. Please don't forget that we are here to help. The STAYING TOGETHER for past and present patients meet on the third Wednesday of every month at 12n in the Library at Yolanda G. Barco Oncology Institute and bring a brown bag lunch as we sit and chat for an hour. Then on the third Wednesday of every month at 7PM in the Library at Yolanda G. Barco Oncology Institute, is a support group for caregivers. If you have any questions or concerns, please feel free to call me at (814) 373-3381. Hope to see you soon! Make it a great day....s Made a call to be a dutiful sister today and after 25 minutes my ears are ringing. I don't know if it is the close to 20 years difference in our ages but as I listen to every detail of life from her side, I am content to just hear the basics, not every detail. My priorities are focused in a different aspect but, I have to realize that I just need to actively listen despite the details. Maybe it is all the attention to detail that I do at work and by the end of the day, I appreciate the quiet and reflect and try to be positive. Yes, life is overwhelming and it is different than 10 years ago or 20 years ago. The little stuff you just have to let go of and if you are a mother of older children with spouses and grandchildren, you know that you are no longer the controller of the ship and most times you just have to stop and listen. Your two cents are worth just that, two cents. I laugh as I reread this as I can remember similar conversations between my mother and a neighber we called Aunt Leone. Maybe the more it changes -life that is- the more it stays the same. We often go to our house on the river and it is like stepping back in time as the clock or watch has no relevance. You just come and go and eat and sleep as it comes and I for one applaud that. Our hustle and bustle and frantic running around like a hamster in a wheel has only lead us to more problems, like- heart disease, ulcers, cancer, and more. So for me and the three day weekend. My watch is coming off and I am going to breathe a little and listen to the details of nature and the sounds of life. Enjoy your day!
Yup, you heard it. Spent the evening making the most non-nutritious thing I know. A friend is leaving so I made some cake balls for her and another friend has a birthday today so I shared the wealth. This is a box cake made normally then scrunched all up with a can of frosting and then made into a ball and dipped in chocolate and can be rolled in nuts or whatever or put on a stick and looks like a lollipop. You got it, sugar galore! It was fun and entertaining and we are sharing them at work. You know I often talk about the right things to do but that doesn't mean I follow my own advice to the letter. I said I start each day new and try to make it better and then I step out of bed. Unfortunately, my dear husband of 20+++ years sometimes gets my flare ups. So this has nothing to do with Cake Balls but, it does bring to light that we often ignore the caregivers in this whole scheme of things. That person that sits with you through your appointments, supports you when you are scared and crying and listens to you complain and argue and fight because you have nothing left to release all that is within. We need to recognize those heroes that have held us up through our battles and continues to listen, rub our backs, hold us when we are crumbling, gets our special treats when we are too sick to go out and change the sheets on our bed in the middle of the night when the hot flashes are coming in droves and we sit in the shower to cool off. As a health care professional we tend to focus on the patient and the support systems is there and appreciated but they need our help as well. They are truly the unsung heroes because they are there 24/7 whereas our time with the patient is intermittent and on a limited basis. My hat is off to all of you caregivers and my undying thanks for all you do, each and every day whether you are husband or wife or friend or relative... you provide that extra care that we can't always provide due to time constraints. Bless you all, each and every day. We love you although we may not always recognize that dedication you provide. You make it a great day!
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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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