So often, being a member of the healthcare team we look at the caregiver and possible burnout as they are maintaining their life and helping to maintain the patient. Bills come, appointments and co-pays add up as well as treatments and more. While the caregiver is doing their routine jobs at work and home, they have also accumulated the patient's jobs as well. Now that also brings me to the patient and burnout. I was talking to a patient not long ago that had three different bouts with cancer and was weighing the pro's and con's of going through treatment one more time. There is also the primary healthcare team member to consider when we talk about burnout too. Yes, they are human too and push to keep the patient and family at it's best and to help with the family dynamics and deal with all of their frustration and blood work results, and pet scans and every other test that the patient is subjected to and the family waits in anticipation as well as everything else that is involved with a cancer diagnosis. The team works to get you to your optimal self and looks to keep you at your best with whatever means that are available. There are times that this amount of energy can be not only physically but mentally demanding for all parties involved. I laugh with patients but I also cry with them. I have found over the years that the best I can do for someone is to be genuine. We walk along side of patients through it all. Hearing the diagnosis of cancer is difficult at best but to have it recur is even harder and then to have acquired types of cancer, is devastating. We all work as a team including the family and patient and the healthcare team listens and supports and helps treat. Yes, we all have our good and bad days. Do I consider that burnout is possible, yes I am sure it is, but it is also a wake up call to take care of yourself and get the help you need. Communication is the best medicine when it comes to burnout. We all need a listening, compassionate ear at various times of our lives. Never think you are above a need for others to help you weather the storm. Ask for help and seek it out, we all need to look after each other. Listen and you will hear not only the patient, the family, but even for yourself if you are part of the healthcare team.
During treatment, I have often heard how taste changes and that can lead to a negative outcome. It may lead to less intake, intake of an unbalanced nature as the patient eats what they like and what tastes good to them and it they may ignore the nutritional needs they have and or they can experience a feeling of fullness early. All this can result in altered nutrition and a possible weight loss. This is not the time to lose weight. These things can result in a negative outcome and may cause long reaching effects.
Sometimes there may be certain tastes that a patient can't define at all or they pattern likes and dislikes change immeasurably. It may even lead the patient to skip meals or even forget to eat if food just doesn't appeal to them because of taste, mouth sores, texture and more.
When you look at a plate of food, you undoubtedly look to the amount on the plate, the color, the smell and the taste of the foods set before you. A patient going through treatment does much the same. Many patients have described a tinny taste to their foods, or they cannot tolerate meat, or the smell of food cooking in the house. A new look and a new perspective is important in dealing with the patient's needs. Seasoning may become their new best friend. This does not mean that you should have spicy foods though. I found for myself it was easier to stick to a specific schedule and to have small frequent meals rather than three large ones through the day. It is important to find a place that is inviting to sit at and eat your food as well. Eating in bed is not always a great tactic not only for digestion but also for your mental well being. Emotions can and do play into your feeding patterns.
If you continue to experience some difficulties or have concerns, contact your healthcare team. Not only do you need to consider taste and smell, and sight, and texture, but also temperature. This may yet be another factor and this again is important to work with your team in order to avoid developing a negative connotation in relationship with food. The team and specifically a nutritionist may help you to achieve a good nutritional balance as well as taking in your taste differences and likes and dislikes.
Make a list of your current likes and dislikes and be open to listening to a new way to incorporate into a nutritionally balanced diet that meets your specific needs. Food is a healer as well as an emotional comforter, having said that, it is now time for my chicken salad and banana for lunch and make it a great day! S
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.
Often you hear people talking about extended endocrine therapy and the benefits. You will hear about 5 years of one type of this drug and then changing to another 5 years of another similar type of drug that will help reduce your chances of getting breast cancer again. Some of us just complete the 5 years of treatment and then nothing else following except our routine mammograms and follow up with our radiation oncologists and medical oncologists. Now that brings me to some new information that has come out and I find it very interesting but for me the jury is still out and I am only sharing information with you. This being said, I must say it is exciting to see new directions and treatments coming out which provide more options. We know that there are some people that will benefit from extended endocrine therapy. Now there is a test being introduced for patients with Er+ ,early stage invasive breast cancer at their 5 year mark and it predicts the risk of late recurrence as well as predicts the patient benefit from extended endocrine therapy. For me that shows promise and the more doors that are opening the closer we are at finding an end to this disease not only for breast cancer but also other cancers. I am like others in that there is that thought of recurrence in the back of our mind and this test will indicate the level of recurrence risk in breast cancer.
That provides some added reassurance of outcomes. I will continue to try to keep you updated on new information but as always, this is something you need to pursue with your health care team. This is yet another great day! S
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.
For most people, when you hear the news you are immediately thrown into a reactive state but what about those that are having genetic testing done? Many of us have even had genetic testing done since diagnosis due to factors that make it compelling to find an answer. I have spent time thinking about this as I knew I had cancer when I had the testing done and discussed it with my family (including my daughter) and what their thoughts would be in relationship to the testing. It threw me a bit backwards when I stopped to think that my own mother died of Alzheimer's and that I could have genetic testing done to see what I might be facing there. I adamantly said no, I did not want tested because there was nothing that I really could do with the information to make it different. I knew right off that I would not want to know that I could be facing Alzheimer's and yet I was counseling others about breast cancer genetic testing. Was I being a false in denying my own future? After some thought, I came to the decision as I had previously held that is everyone's right but yet I had a more compelling story for those looking at possibly carrying the breast cancer gene. The bottom line is, there is something that you can do about it whether that is a prophylactic mastectomy or possibly more aggressive cancer screening for the rest of their lives. If I could step back before my diagnosis and knew that this was where it was leading, I am pretty sure (NO) I am positive I would have navigated the possibilities. That being said, taking control of my future would have proved beneficial not only medically but also emotionally and any other way you can think of. I will say that my genetic testing related to the breast cancer was negative and I was pleased to share that with my family. The Alzheimer's is a wait and see...and pray! I hope that others wi
I am just hitting overdrive and we still have quite a few days before Christmas. I am healthy, happy, working, active, and still laughing but the next week may just be a bit overwhelming at this time. I am so looking forward to family and friends coming in and out but getting ready and making sure I have covered all my bases and have everything wrapped and ready is getting to me (just a little)! I don't know what great nieces and nephews have or want or need. I still have cookies I need made and cleaning to do and heaven knows I haven't even kept up with my friends for awhile. I also am starting to recognize, I am my mother at times and even my grandmother as I find that I am giving money as gifts rather than get something that no one wants and I know money fits. It works for me and I have never had anyone say then needed to exchange it.
I am also working towards my ninth year since my cancer diagnosis. I sat with a young woman last night that has three young daughters and had been diagnosed in September with DCIS and decided to go with a bilateral mastectomy in October and as we talked about what she is physically and emotionally feeling, I felt blest to be so far out and doing well. Yes, there have been biopsies and scares in the interim but on the whole, we are moving forward. I could hear her thoughts as she talked about her nipples and tatooing them and what would she feel like or think after this was all completed. I gave her my cell and home number as well as work and we hugged as if we had known each other forever and yet we have only met a few times but we are among the sisterhood of survivors. She hit my prayer list last night. I also am thankful that 10 years ago today I came back to working in Meadville and started back at MMCHS which is where I started in training to become a nurse in 1970 and where I started as a candy striper and a nurses aide and then on to nurses training. It has been my home for a lifetime in so many ways and will also be where I hopefully retire from some day.
Yes the crazies are here but despite the frenzy, people show more love and compassion, caring, and even a little more patience. I know it has been said but I wish this could continue all year long. The hustle and bustle is exhausting, the feeling of Christmas is delightful so today and everyday I will try to Make It A Great Day!.
We are all aware that there is a mind body connection in every being or part of our body. It is something that keeps us aware of the focus that is needed in helping with stress reduction and many other interventions to improve our mental and physical health. Sleep is one of those processes that is affected by the mind body connection. I have never been a great sleeper but I am also one that needs her sleep. After I passed through menopause, it got even more difficult to get a full night of uninterrupted sleep. Sleep disturbances are very common to cancer patients and survivors. This one aspect in your recovery and survivorship is of utmost importance in your daily health. Learning to calm the mind and slow down the processes and relax takes a certain amount of training and practice. Watching in TV is not one of those tricks that will help and a clock by your bed that has enough light to land a plane is not going to help either. In fact, turn the clock away from you so you don't keep waking up and looking at the clock. Reaching a state of well being helps in the healing processes and also helps to reduce those negative thought patterns. Being mindful of what made you happy today and writing three positive things that impacted your life each night before bed is a good practice. Unfortunately, the negative carries alot of weight for many and can help erode the whole process. Keeping a small book by your bed so when those unanswered questions pop up in the middle of the night, write them down and then close the book and go back to sleep. You have now given it a voice that you can address in the morning. Many studies are going on at the moment regarding this mindfulness and different techniques to help develop a more positive mind -body awareness. Slow down, deep breathe and count to eight as you breathe in and then exhale through pursed lips to the count of eight. Do that for a series of 5 or more and you will soon find out that you have mindfully slowed down the processes that have been circulating in your head. All of these techniques are easy to do and does not require any advance degree or understanding and although this is still being studied, the results are showing it does improve that mind body connection. So what have you got to lose? I hope tonight that you will start to integrate some of these techniques and that you will reap the same benefits that I have been experiencing by doing some of these exercises and in doing so, making today a great day!
According to an article in ONCOLOGY TIMES (December 10,2013) by Heather Lindsey, talks about how most men with localized breast cancer undergo mastectomy rather than lumpectomy and in addition to that, those with locally advanced disease are less likely to receive postmastectomy radiation. What is assumed, gives less availability to options that are readily available in the female population rather than to the male population dealing with breast cancer. The biggest concern in these findings is the lack of use of postmastectomy radiation.
It is important that information and education be readily available to the male patient as well as the female patient. Interestingly, it talks about most men's breast cancer being located behind or adjacent to or growing into the nipple thus necessitating a mastectomy, Men routinely present with larger tumors leading to the thought of procrastination in seeking treatment and most men have less breast tissue adding to the difficulty of conservative surgical treatment. This article also discusses the fact that we are currently looking at the differences /or similarities of breast cancer in men and women. Breast cancer in men are more often diagnosed at an older age. It also notes that there has been evidence of clustering of breast cancer cases in men as well as presenting with different margins and grades and also that they tend to have less triple negative disease. Suffice to say that there needs to be alot more data collected and analyzed but it does give pause for thought in this particular instance. Is breast cancer and treatment the same for men and women? I am sure there will be more information coming out as
I ran across an article while waiting to see a doctor the other day and I did what I hate most. I ripped it out so I could reread it numerous times after I got home. At least it wasn't a recipe which you often find ripped out or there are some ingredient listings missing. This article stirred in me something that I preach and that is you can train your brain to be happy and you choose to be happy or not each day. This same article was in a magazine that focused on arthritis but I think that it applies to those of us that have or are going through treatment and in fact for everyone just to face each day, to deal with daily pain and fatigue or even inflammation. Some key parts to this process is not faking it till you get there or ignoring what you are going through but to improve your attitude in your daily life to feel physically and emotionally better.
Some of the tools mentioned are the same tools that I encourage patients to try including writing it down. I stress to look within and write three good things that happened today to make it a more positive day. They say any change in daily habits has to be consistently done for thirty days nonstop and this article even stressed a six week trial. I hope that if you attempt this for thirty days that you will see the change and continue this practice the rest of your life.
Another suggestion is if your thoughts are running wild, then look to what part of those thoughts are true and change it. Reframe your input and in the long run, you will develop a more positive outlook.
The final one is something that I came to during treatment and after and that is to hang with positive people. Someone that is always complaining and negative tends to drag you down so look for positive, reinforcing, and encouraging people. The other thing that I have found that if someone decides they should impart their infinite wisdom about how poorly someone is doing during treatment or what a terrible outcome that someone came to, I can listen or I can say, I just can't deal with your issues now and I am looking for positive reinforcement. I appreciate that you care but your information is not helping me at this time. At least you have acknowledged the person but you also took control and were able to change the direction of the conversation. If that doesn't work at that point, then walk away.
Last but not least, get a good night's sleep. We all do better and feel better when we have a good night's sleep and even if it is disrupted one hour it can change your perspective of the day and what is happening in your life at this time. So, as I always close, make it a great day and be grateful for at
LBBC Opens National Breast Cancer Survey Study, open through Jan. 10, assesses unique information and support needs
November 25, 2013
Living Beyond Breast Cancer opened a national survey today to assess the unique information and support needs of all women with breast cancer.
Available online until midnight PT on Friday, Jan.10, the survey asks about the information and support available to women with breast cancer. The organization will use the survey findings to identify and address gaps in services for people with specific breast cancer diagnoses, such as triple-negative, hormone-positive or HER2 positive.
Start the survey now.
Download a flyer about the survey now.
Who May Participate?
All women who have ever been diagnosed with or treated for breast cancer may take part in this survey. Participants may be recently diagnosed, in treatment, post-treatment, have had a return of breast cancer, or be living with metastatic (stage IV) disease. We seek people with a diversity of experiences, so please spread the word about this opportunity. All responses are anonymous.
Every participant who completes the survey, which takes about 30 minutes, will receive a coupon for a free LipDrink SPF 15 lip balm with any $50 purchase from jane iredale. Participants may also enter a drawing for a chance at one of four $150 amazon.com gift cards.
How Will LBBC Use the Survey Findings?
Survey responses will help shape future Living Beyond Breast Cancer materials, and they will help us develop programs for unique groups of women affected by breast cancer. We will share what we learn with healthcare providers and other organizations. A summary of the findings will be published in 2014 on lbbc.org.
How Do I Participate?
You may start now by completing the survey online. If you have questions or concerns, please call LBBC at (610) 645-4567.
Living Beyond Breast Cancer
354 West Lancaster Ave., Suite 224
Haverford, PA 19041
Last night ,due to lack of energy after a full day, I turned the TV on and got caught up in a show that I have not actually watched except for the advertising that was on promoting a new show. I became fixated on the show as they took on a weighty subject of breast cancer with one of the family friends. This friend had always been there for everyone else but her own son who was not involved in her life due to a drinking problem that she was dealing with while he was growing up. Quite rapidly it went to her home filled with cats and what her life truly was about. The women in the show had been friends for a long time through AA but actually didn't really know each other when it came right down to it. Their humor was inappropriate at best and yet there was a redeeming quality to facing what was actually happening rather than skirt the issue. The mother, daughter (that are her friends) are seen actually doing a self breast exam fully clothed and discussing the reasons they are checking and the concern over what they might find. Yes, this was a little off but yet was very clearly on the mark at what others feel as well as what the patient is going through. There was laughter among the comments that were very poignant at times and inappropriate at other times. It took a look at the whole picture and we could sit back and watch it all happen. I applaud the show for presenting a humorous, and yet timely interpretation of something that we all hide from or try to avoid. We do have to remember that those going through cancer do not want to be treated any different and that humor is ok regardless of what is happening and that we all need family and friends to get through life. The end of the show, brought smiles as the missing son texted his mom that he wanted to see her