Having aired my frustration, it is right up there with the person in treatment that continues to smoke and the person that choses to go against what the doctor has said or even doesn't come back for their appointments and yet it never fails, when it gets late in the game, there they are wanting us to fix it. Time can be on our side or against you and that is your choice. I care deeply about my patients and want the best in every situation but the patient has to meet me half way and do their part too. My dream is that one day we won't even talk about cancer just like polio is rarely even mentioned in the United States. Let's help to make this all go away in our lifetime and let's take better care of ourselves than we do our cars and make it a great day! PS Get your testing done and get help to quit smoking. Sincerely,S
It still surprises me when I find a patient that has known a lump was there and did not pursue getting answers. It makes my heart ache to know that a year earlier finding it and getting it checked could make all the difference in the world. I often hear that I am afraid to do it, and I struggle with that. It is an easy, quick test and with minor issues related to it. Yes, it might be a bit of a pinch but it is for seconds and not minutes and yet there is still avoidance of this tool that can literally save your life. I also hear that I just don't want to know. I find that an extremely hard one to swallow as if you do know, then we can do something about it. The other big one is that I don't have the money for a mammogram and to that I say, there are ways to do it and programs to help so don't let your answer be, I haven't had one for five years. I recently met a patient that had found that she did have cancer and it was found early but she also knew there was a strong family history so she had routinely had testing and follow up and at the time did not have insurance but it has all worked out. The part that is so frustrating is that she has another close relative in the medical field that hasn't had a mammogram even with the education that there can be a family history which means we will follow you more closely and maybe do more frequent testing.
Having aired my frustration, it is right up there with the person in treatment that continues to smoke and the person that choses to go against what the doctor has said or even doesn't come back for their appointments and yet it never fails, when it gets late in the game, there they are wanting us to fix it. Time can be on our side or against you and that is your choice. I care deeply about my patients and want the best in every situation but the patient has to meet me half way and do their part too. My dream is that one day we won't even talk about cancer just like polio is rarely even mentioned in the United States. Let's help to make this all go away in our lifetime and let's take better care of ourselves than we do our cars and make it a great day! PS Get your testing done and get help to quit smoking. Sincerely,S
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Ok, I admit it... it has been so cold that I have had a brain freeze. No really, just a little writer's block looking for new things to relay to you and there are so many things that I haven't been able to narrow it down and put it into our English and not Medical English to give you the What is Happening in the Breast Cancer World! What I will be presenting today is managing financial concerns.
Obviously when you get the diagnosis of cancer you are first having to deal with that and digest it before you even begin to think about costs and what impact financially this will have on you and your family. There will be so many things to put into the plan including: will I be able to work through treatment, will my insurance cover this, can I handle the co-pays, what is I need some type of homecare , what about prescription costs,and what about the transportation costs to get to treatment let alone if you need to stay overnight or meals while you are there? That is just to name a few that pop up immediately. First and foremost, make a plan and have a system of keeping your medical expenses so you can refer to them as needed or requested. Most institutions have a financial planner or social worker to help. That is probably the best clue I have for you today but there is more. Put your bills in a priority of what has to be paid when and can you talk to the creditors to see if they will work with you on a payment plan and also looke to possible patient assistance programs. All this is overwhelming and sends me right back to the most important part of the information I can give you, find that financial planner or social worker tied into your healthcare facility and bring you bills including medical expenses, utilities, taxes, rent or mortgage and income statements as that is the starting point. This is a challenging time and worrying about finances is the last thing you should need to do. Some costs are hard to estimate and having specialist that works with this everyday will be your saving grace in getting answers. If you can look at putting a budget together to help address these things, it will be a huge help. I will say that I was very fortunate(Blessed) as I didn't see one bill nor did I question what was going on, my husband took the reins and guided us through the financial ins and outs. I know that at one point one of the injections I was receiving was $2,000 a shot and that was 7 years ago. I know that I was just flabbergasted at that as that was only a small part of what I was going through. I jokingly say that I am the Million Dollar woman and I am here and alive. So much comes at you at one time when you are diagnosed, get help and be diligetn about talking notes of who you talked to when and keep all the correspondence and have a filing system. I sugeest one of those divided folders that you can pick up and carry to your next appointment. Yes, I am talking about you! This is a nation tired. The one complaint I hear most often from Survivors and those that have not had cancer is that we are all tired. Right now I will focus on the survivor and it may yet me another blog for all the rest out there that are just plain tired. Fatigue is the name you hear most often, it is a feeling of being very tired physically, mentally, and emotionally. Cancer tired is a different type of tired than the general populace. I often would say, that the only way I can describe it is that I was just too tired to breathe, not that I didn't want to but just didn't feel I had the strength to breathe. Many will say that they are weary or worn out or feel heavy. Fatigue may start slow or appear quickly and it is overwhelming. It is encompassing and may make it hard work to eat, or hard to take care of yourself as you normally would and it may in fact make it hard to focus or even how you relate to others as you are just too tired. More than 3 out of 4 people having cancer will state that fatigue is more stressful than vomiting, nausea, or pain. Cancer can even affect sleep problems and may even affect how you feel about every day issues and may in fact would cause a feeling of anxiousness or even depression. Fatigue is also hard to treat.
So now what do you do? You are fatigued and who do you turn to? You tell your doctor or your nurse about it and be honest as to how much it is affecting your life. Start to plan your day so you have time to rest and small breaks to regenerate. Do the most important things when you have the most energy and can be the most productive. Don't forget, your friends can also be a help. Learn ways to improve your life which could include: Yoga, meditation, reading, playing, exercising or even music. Of course you need to keep your doctor informed and he/she may in fact do some blood work just to make sure that your issue has nothing to do with low blood counts. If your fatigue gets worse and it is disrupting your life, you need to tell this to your healthcare professional so that those issues can be addressed. It sometimes help to keep a record of your level of energy. Do you find it is difficult to get out of bed in the morning, how many times a night are you awake, are you confused, do you feel you can't get out of bed? All these things are important and a point of interest to follow up on. I talk so often to the patient that I often forget about the support system behind the patient and disease and there are many more of you out there that are caregivers to the caregivers. First and foremost, be kind to yourself. You cannot be your best if you have given everything you have got to give because empty just doesn't equal happy or content or fulfilled by the patient or the caregiver. As a new mother, you give everything to your new baby and your husband can sometimes feel like he has been lost in the wind and then you find yourself daydreaming cutting his meat while making babyfaces to your child. What happened to the you that you once were? You need to reach out to those friends that are still standing by you and let them in. Some of your well meaning friends have run in the opposite direction for whatever reasons as well and you just let that go and move on. Look to those people that make you feel loved and accepted and you feel their warmth and care and let them help. Do your windows need washed? Probably but not necessarily today... there are other things that can wait as you cannot continue doing everything you did before and with the added responsibility of being a caregiver. Then you sit and wonder why you are tired and you can't focus on anything and you could care less about what to cook or eat or when the dogs got fed last. Juggling is your new mantra and you are just going to have to let some things go, it will be there when you are ready to get back to it, I guarantee it. Now again, caregivers- don't be so stubborn or working on becoming a martyr... let others help and ask them to. They may not do it just exactly as you do it but it does get done and it is alright for now. Perfection is not the answer unless you are Martha Stewart. Let go of some of that control and renew you . Look for fun or make some fun! Seems strange during such a difficult time but laughter is the best medicine even when facing great difficulties.
Support is something everyone seems to steer clear of but this is a time that it helps to talk to someone outside the family and find a group that may very well have faced the same difficulties as you are as a caregiver and they understand or even a one to one with someone you trust and care about. In order for you to stay healthy and strong you need to fill your vessel as well as be a caretaker for the person you love. You will do a much better job if you do and you will feel better about yourself as well. This is a win/win. Running on empty does not help anyone! Make it a great day! S That is one of my favorite words, Survivorship! We all want to have a long, quality life and for those of us that have faced some medical issues, it has become a front and center issue. We need to live healthy to be healthy. Maintaining a healthy weight, eating a healthy diet, getting adequate physical exercise as we all want to reduce the chance of recurrence. Survivorship starts the moment of diagnosis and we no longer just look at a point of survivorship as being 5 years free of cancer and then you are homefree and that is no guarantee of disease-free survival. We need to look at late effects of cancer treatment, of follow-up and tracking the patient and even post traumatic stress and individual needs to help patients achieve a quality and longevity of life. It is important to look at strategies to help raise awareness of medical, functional, and psychosocial outcomes of cancer and its treatment. It is important that we look at improving life for the cancer survivors and look at fair employment practices and health insurance, and continued research as well as promoting advocacy and leadership. During the transition phase from active treatment to survivorship, we have to keep in mind the multidisciplinary team that have been administering to this patient and to try and coordinate care after completion of treatment. How often I have heard patients say, I don't know who to call for what and many can't afford numerous co-pays to track down which caregiver they should be addressing their concerns to. As a former patient, I also felt that once the treatment was done, I should be happy to be alive and go about my normal business but nothing could have been further from the truth and my normal was totally different than it had been before. Think of all the multiple health reports that a patient has to shift through as well as the insurance issues that need to be addressed. Also in the thought process must be ongoing surveillance and compliance from the patient to do so. Survivorship means helping cancer survivors and their families to pursue the life that they want and have a quality to it and that can be accomplished through a program for the survivors. Make it a good day. S
When you are faced with cancer, you are on information overload and drowning as you don't know what to do next. At least I was, I listened to doctors and sat there nodding and after walking out of the office, wondering what they even had told me.
As I have thought about this many times, I have often counseled patients to bring another set of ears, bring someone with and someone to take notes so you can refer back to them and also so you can write the questions out that wake you at 2 am and keep rattling through your brain. So having said all that, I came up with some questions for those of you that have been told you have breast cancer or are waiting to hear what is happening or about to due to recent testing. 1. What kind of cancer do I have? This is important to know and also to learn about the size of the tumor, what stage and if there are any nodes involved or metastasis/ You will also want to know if it is estrogen and or progesterone positive or negative as well as the HER2 status and if you need to have BRCA testing to determine if genetics play a role in this. Once these are answered, you may even need to ask if they will be doing Oncotype testing as part of determining what treatment lies ahead. Once these are answered, there will be a better understanding of what direction the next step will be. 2. What kind of treatment will it require? Now we are into what kind of surgery and at what point will surgery be done and by whom and will it involve a lumpectomy or mastectomy and if mastectomy, will I need to consider reconstruction and by whom? Will I be doing chemotherapy and will I lose my hair and what are the side effects and how many treatments for how long? Will I also need radiation and how many treatments and how long? Will there also be side effects to that and what can I expect? When does surgery fit into all of this? 3. Should I get a second opinion? This is a personal decision but highly recommended as it will clarify what your options are and if there is a difference in opinion, there is nothing wrong with getting a third opinion. In the long run, you have to be comfortable with the plan that is ahead and have confidence and trust in the providers that will be on your team. We explore all options when buying a car, why would we do less when it comes to our bodies! 4. Should I consider a clinical trial? This is a question to discuss with your clinical provider as most trials are evaluating new drugs and treatments but there are criteria and indications who should or should not be involved and what your level of commitment is and if you would be a candidate for any of these things. Again, talk to your provider and get your answers. 5. What are my long term outcomes? Once you have a plan of what you are doing, you also want to know what the possible outcomes are for you. Maybe this should be your number one question in the scheme of things but I have found for myself and others they want to take care of what is going on and then find out the outcome will be. You have been bombarded with information and this overload is sometimes suffocating but you will slowly dig your way out along with the information as it slowly starts to fall in place and make sense and you are back in charge of your ship just by the fact you have some understanding of what is happening. I do know and realize that in the back of your mind from day one, is - am I going to live? and am I going to live fully and for how long? This is a tough question to ask and sometimes we don't want to know the answer directly but I have found with knowledge comes better adjustment to what needs to be done and what lies ahead and how to deal with things. It is the elephant in the room and it does need to be discussed but just like the elephant in the room- no one can eat a whole elephant, you have to take one bite at a time and it is the same when you here those words, You have cancer! This is a tough rode no matter what is in your plan but once you get the plan and have the directions on how to get there, you are then back in control for what lies ahead. You are in thoughts and prayers no matter what corner of this earth you are on and the best tool I can recommend is your faith. There will be trials and tribulations but your strength will be through your faith, so hold on to it and know that you are loved, you can see that from the reflection of the faces that are looking at you right now. Making it a great day! S Years ago, before I was even diagnosed with breast cancer I was involved in a cancer committee at the hospital and The American Cancer Society and on the board there as well as the Nurse of Hope at the time. I will never forget that at one point there was a doctor that actually told me he did not believe in lymphedema. Now realize that was about 30 plus years ago and I would like to think there wasn't lymphedema but I knew better. You see I had a grandmother who had breast cancer and each night we put on a plastic sleeve very much like the blow up ring you use to help a young child swim. We would put that sleeve on her affected arm to reduce the swelling in that arm from lymphedema. I recall how careful she had to be in buying clothes and how embarassed she was at the size difference between the two arms. At that time there were people that actually thought you could catch cancer and I have seen it to this point today where there is massage for lymphedema and it is not just from breast cancer but in other areas of the body that have developed lymphedema. How difficult it must have been to feel, see, and know there is a difference in an extremity and not have it recognized or treated! Today in addition to massage, there are sleeves and machines that you put on a garment at night to bring down the swelling. During treatment there are measurements and follow through but realize you should be alert to any changes the rest of your life and don't hesitate to report it to your doctor. Just a quick review for those of you not sure what to look for there are a list of signs below:
Some signs of lymphedema include:
If you have had lymph nodes removed or radiation treatment, look closely at your body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color. If you notice any of the signs listed above, and if they last for 1 to 2 weeks, call your doctor or nurse. Disclaimer: This website is for informational purposes only and is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of any medical institution. As always, make it a great day! PS love to all my family followers, you are never far f |
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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