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This week, I'd like to put a call out to all of the veteran cancer survivors who are reading and participating on the blog. One of the primary goals for the blog is to support and reassure each other on this journey.
My question to you is this: "What do you know today that you wish you'd known in the beginning as a new cancer survivor?"
We frequently partner mentors with newly diagnosed cancer patients in person. I thought it would be interesting to try virtual mentoring through this discussion.
If you're interested in posting your pearls of wisdom for other survivors, keep a few things in mind as you write your comments.
In the first year after diagnosis:
Everyone's experience is unique — however, it can be a great comfort to hear from others who've already been down the path yet to come. Please share your words of support and wisdom.
Follow me on Twitter at @SherylNess1. Join the discussion at #livingwithcancer.
Sheryl M. Ness, R.N.
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Join the discussion at #livingwithcancer.
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I am ten weeks POST treatment (surgery / chemo / radiation, in that order) for triple-negative Stage 1 breast cancer. I am on anti-depressants and have plenty of support, but am still completely without energy. Sometimes sleep all day. Has anyone else had this experience? Why am I so exhausted? I feel lazy, but cannot overcome the fatigue. Advice welcome....
Searching for an ovarian cancer survivor...found nothing so decided to post my story. As of November I will be an 8 year..no typo...cancer survivor. Not without reoccurrence, but still totally functional and alive. About to pursue my 3rd reoccurrence after a low 7 CA125 count, but fight I will. Any other ovarian survivors out there? We need your support, too.
As someone who is now over 18 years down the track since diagnosis and treatment, hindsight is a wonderful thing. The survivorship phase can be dangerous because people start to focus on what just happened, and can often can find the decreased interaction with professionals and friends (because they think you're ok now) can be quite confronting. My biggest tip would be to ask for help when you need it - that's nowhere near as hard as not asking for help. And also realise, your second chance is what you make it. If you don't go after what you really want, then it's your fault. I have gone on to do some wonderful things since, like establishing a travel blog that has presented some oppportunities to me I never thought would happen (see http://www.thetraveltart.com). My passion is travelling, and I've visited over 50 countries on 6 continents so far and I'm not stopping!
Shortly after my diagnosis, a close relative asked me how did I get my breast cancer...like it was possible to purchase cancer. After picking myself off the floor and not laughing over the phone, I realized she was serious and not trying to be rude. I knew I had to educate myself and help educate my immediate family.
My weekly support group made a difference for me. My new cancer experienced friends gave me tips, support, and love. I attended two meetings before my surgery and was able to not miss the next meeting...my 3rd.
I'm cancer free for 4years! If I have another bout of cancer, I have a support system in place: my husband, family and friends!
My most difficult experience was the first meeting to outline treatment and medications for multiple myeloma. It was a shock of reality and it all seemed so complicated and overwhelming. After being diagnosed, I thought about friends who had severe health problems, and I felt glad I didn't have to cope with their problems; afterall, I only had cancer and it was treatable. It kept me positive to view it as a learning experience. I learned from other patients how they were treating, one traditionally and another non-traditionally and it helped me decide what course I wanted to follow and to take charge of my own treatment with the oncologists help. I have learned not to get discouraged if I can't do as much as I did before teatment but to be content to accomplish one task a day if that is all I can do. After 3 years of treatment, I took a break in February while being regularly monitored to see if and when I may need to resume chemo. Each month in remission is a blessing.
This has certainly turned out to be a hot topic. I re read Sheryl's questions and would like to comment on the last one. The most difficult experience. Well, there was many but the one that stands in my mind is my appearance. I found that people wee staring at me in the brest area. I also hid myself from spouse and always wore a camisole. TI still have difficulty but it is better. One day when with a bunch of lady friends I had a over blouse on over my t shirt. While standing in a group I just opened the blouse and announced here is my new look. Lots of laughter and no more curious stares My mastectomy bras are uncomfortable so I just do not wear it unless going out for special occasions. I wear floppy sweatshirts and /or a nice blouse or jacket over my blouse or polo.
Well said Kate...........and great advice. My Dr. has always insisted that nothing he gave me would cause CHEMO BRAIN. Besides that one irritating response, I really like him and, thru lots of research reading, see that he is on the cutting edge of cancer treatments. My other doctors have no response when I tell them of my symptoms either. Can't afford to go to specialists, so I deal with it, knowing I'm not as sharp as I used to be.......find something you enjoy and just DO IT!
Hello and thanks to all who shared. Maureen, I soooo hear what you are saying. The aftermath is worse than the cancer in many ways. I'm 5 yrs out, and yes, grateful to have survived, yet missing dear friends who didn't. I'm thankful for my many good doctors and shocked at how terrible some practitioners can be. Surprised at the support of strangers and hurt by how insensitive, even insulting, family members were when I was in treatment. Some cannot handle a crisis, so rely on others. It's not all or nothing, they want to think you beat it, so you're fine. Just not so. And CHEMOBRAIN SUCKS! Three years after being pooh-poohed and overruled by my oncologist I'm finally getting genetic testing, a lymphadema eval, and the right meds. And a neurologist addressing the brain issues. In other words, good follow-up care, which was sorely lacking. Thanks to my new oncologist. We deserve better care, and to be taken seriously. With Chemobrain, it is sometimes hard to communicate effectively, but don't let them speak for you or silence you. You know your own story, you are allowed to tell it, even if not perfect or the typical textbk story. Don't give up, don't give in, fire those who need to go away, whether a smarmy Dr. or a lousy friend. Music, sunlight, and exercise were and are my lifeline. Find one thing that brings you joy, and indulge! Only you can know what that is, and don't let anyone talk you out of it. You deserve it.
Hi to all posters.
I have learned a lot from your stories. My son developed a large sarcoma tumour in the middle of his back last year. It took months to diagnose. It was hard to get GPs to accept that this might be something else beside a cyst, until the thing was the size of a grapefruit. Curious as it may seem the best way (in the Canadian health system) to get diagnosed was to go through Emergency Centers at hospitals. Yes, you have to wait hours, even days.
Another irony in our son's case was that we learned more from another cancer survivor than from a series of surgeons, plastic surgeons and nurses. One point was that radiation sensitizes the skin and puts you at greater risk of reactions to things like long-term bandaging, strong sunlight and certain food items such as ginger, bamboo shoots, and sticky rice. Our son had a massive skin reaction a month ago with swelling and excessive itching, threatening the wound itself and the whole healing process (going into sixth month now). With comparative information from the other survivor, we can see that the reaction was probably a combination of these negative factors. Now the skin has cleared up and healing continues, though slowly.
We received great help from someone who has been through it all before.
Maureen, I just re-read your comments, and I'd like to suggest something that has made a TREMENDOUS difference in my outlook....talk with your doctor about taking anti depressants. The LAST thing I wanted to do after all the chemo poison was pumped into me was to take even more drugs. But what a difference, they allow me to be "myself" once again, and to enjoy life, and allows people to "enjoy" me. I can accept the "new normal". No, they are not "happy pills" (as many of my friends say), they are a crutch that, as a cancer SURVIVOR, I am not afraid to admit helps me. Cancer sucks.......Chemo sucks......my doctor says my cancer will probably come back at some time, THAT sucks. For the time being, I want to feel as "normal" as I can.
Maureen, I think I can say I KNOW HOW YOU FEEL. 30 years ago (yes, I am a longtime survivor) I had the same treatments that you recently went thru. I never asked what stage I was, but my lymph nodes were involved. Yes, the Adriamyacin screwed up my heart but the cardiologist says that the drug regimen I'm on is working out well.Please know that you are at a higher risk for ovarian cancer, I didn't know this. At the same time you were going thru treatment for stage 4 breast cancer, I was going thru chemo and surgery and more chemo for stage 4 ovarian cancer. I also had the tingling in my hands, made it almost impossible to do any keyboarding. Now, 4 years later, I only have tingling occasionally. During treatment, my dr. offered medication for the tingling, but I told him I didn't want to take any MORE drugs. I don't know what to tell you about the chemo brain, I still have problems with remembering...and forget multitasking (I thought I had invented that, too) I forget what I'm doing in the middle of doing it. My coping so I don't feel so stupid is to read a lot....I read every type of book the library has, I feel like maybe I am exercising my brain in a way I enjoy. I really hate to sound like everything you have already heard about recovering from chemo, surgery and radiation treatments....but it DOES TAKE TIME. I am very impatient and didn't think I HAD the time for things to get better....but I did...and they did...keep talking to others, it helps.
Maureen I was very moved by your situation. I am also a with stage 4 breast cancer this time but I have not experienced the things you have. The ordinary things like fatigue, nausea and feelings of when and how are there along with not sleeping well but I try to sing to myself or get the thought out of my mind anyway I can. Just wanted to tell you to hang in there and sometimes for me it is day by day and even hour by hour. My feet are starting to tingle a little but I will bring it up with my oncologist and perhaps that is a side effect but not a serious one. I am not sure. I do believe the weather has a lot to do with the way my body reacts, particularly heat and humidity. God Bless.
I was diagnosed with stage 4 breast cancer in March 2009, had a double radical mastectomy all my nodes in the left breast were positive for cancer. I had chemo (Adriomycin, Cytoxin and Taxol) and 6 weeks of radiation (daily) and when I was activly doing all these things I felt like I was doing something, fighting, since I have finished treatment I don't know where I stand, I've been told that so far I'm ok, but I don't feel ok, I definatly have chemo brain, I have no doubt about it, my memory is shot,I used to be the most organized person, and now I'm so disorganized it drives me crazy. I invented multi tasking and now I can't do one thing at a time with out something going wrong. It is so frustrating, I got through all the treatment because I was on auto-pilot, now what? I was learning how to survive before, now I don't know what I'm supposed to do, I still feel like I'm dying but I'm not living that's for sure, I'm existing. It's depressing. I wish I never got chemo, chemo ruined the organs that were ok when I started out. My adrenal gland went into "adrenal failure", I now have to take hydrocortisone to supplement what my body doesn't produce any more. I have so much to learn about the long term side effects of chemo because I still have tingling in my hands and feet, sometimes they hurt so bad, my chemo brain, adrenal function, and my heart which used to be the best organ I had is now having problems too, does any one else have these problems?
I lost my husband 5 yrs ago.2 yrs ago I showed symptoms of pancreatic cancer and ended up in hospital with the pancreas removed and various other bits and pieces and turned into Diabetic Type 1. 1 yr later CT scan in the UK showed 8-9 nodules in my left lung.Petscan in the US showed them negative.Researching the net and adjusting my diet, a new CTscan with contrast showed that the nodules were shrinking!!!It really helps to ask, ask and ask and research the problem.Once I had left hospital a long time friend from the US came to visit, we flew back to California and got married! He too was widowed and that at the grand old age of 74/88.After all the trauma, happiness and long may it continue.
My most unexpected happening the first year was I had cancer. This happened the second time I had cancer and it is as unexpected the third time as the first and second. However, the emotions are different. The first year I laid on the couch a lot and I cried a lot. The drains I had to take care of were disturbing but home health care for a couple of weeks during that period was reassuring. The second time I took care of the drain myself and this time surgery is not an option. It is strange how the emotions change. There are very few tears, I do have pain but it s tolerable with mild pain pills. I have not spent a day on the couch and feel more peace than sorrow. I am very frightened about the way I shall die and yet have confidence in my doctor that she will not let that happen. I am sorry to have to leave my family and most of all my husband of 57 years. At this time though I have had oral chemo for year and a half an by golly some of the lesions have shrunk and they are all stable. I have been fighting this for fifteen years and each time I have a scan and get a report like that I feel renewed. As it has been said no two patients are alike. Each is unique and that is why they need to keep the research active. It is true that my grown children do not ask about it much and really do not know the days of fatique I have . My own Pastor does not ask. However, I do have a few friends that ask almost every day and actually that is too much. My 1500 word are used.
I just wanted to thank everyone who has posted so far. I was diagnosed last month with stage 2 breast cancer and am now doing chemotherapy. I'm 31 and thought I was in really good health. Emotionally, it's been a real ride. Since my diagnosis, several cancer veterans (some with breast cancer, others with different kinds) have reached out to me. It's exactly as others have posted - many of my biggest supporters have not been who I'd expect... friends of friends, former high school teacher, co-workers whose cancer experience was unknown to me. It has been so reassuring to hear their stories and advice, especially about how to manage the emotional part of this experience. I've gotten great tips on handling chemo side effects too. In many ways, these people have become my mentors. I have a very supportive spouse and family, but I can't talk to them in the same way as I can with someone who's been through it. My husband keeps telling me that one day I'll be the person reaching out to help cancer patients. And that thought is very motivating. Just hearing 'you can do it' from someone whose done it is powerful! Thanks, again, everyone!!
DCIS stage 0 breast cancer. Although surgeons consider this 'pre" cancer, it still is cancer. 7 weeks of daily radiation and having people saying - "I can't believe that YOU got breast cancer" Surround yourself with positive people. Don't be afraid to ask for help. Having meals made was terrific and it was a great help to speak to friends who went through your procedure. It is one thing when an oncologist speaks to you, and another when a friend does.
I was diagnosed Jan '012, top half of right lung cut out 24 Feb '012. After shock, depression, recovery I came across an article in a cancer forum that explained a lot of what I went/was going/and would experience.
"The Things I Wish I Were Told When I Was Diagnosed With
...freelance writer...diagnosed leukemia age 27.
Outline of it...
"Your relationships are about to change.
All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.
You will be determined to have more energy than you do...
You are going to feel fear...
The people who love you will be just as scared as you are...
The sooner you recognize that you are mortal, the sooner you can create the mentality for survival...
Your doctors and nurses will become your source of comfort..
You will need to find balance after treatment...
You will inspire others. It will feel weird."
Full text at above pointer
I am not a cancer survivor, but I feel that way. My otherwise healthy, active, fit husband received a metastatic colorectal cancer diagnosis (stage IV) one year ago, at age 36. Two surgeries and six months of chemo later, he is now in full remission. But in many ways, I often feel that the most difficult thing about cancer, is the "after". We've been running on adrenaline for a year, as I've continued working full-time and raising our two very young boys. But now, fatigue has set in and everyone expects that we should return to "business as usual." I often wish I could hide under a rock for a few months! I'm very interested in hearing about how cancer veterans have adapted to the "new cancer normal" after treatments are done. Thank you.
OK, I am the same "Linda" that just posted my breast cancer survivor story. I wish that I had known that I was at a higher risk for ovarian cancer. I was diagnosed Feb 2009 with Stage IV ovarian cancer....6 months of chemo (with that "shot" to boost my blood cells the day after treatment)...hysterectomy and de-bulking.....6 more months of chemo (a different "boost shot" the day after treatments, not as bad as the first round). you just never know, remember THAT.....here it is, 3 years AFTER that treatment, and...no sign of cancer. During treatment, I would see "trailers" at the movies, only to hear they were not coming out for several months....I thought to myself "I won't be around to see those movies"...silly thinking like that is pretty normal. I hope that I did a good job of "mentoring" my nephew's future mother-in-law last Sunday...she is undergoing chemo for breast cancer,already dreading the surgery and radiation treatments. We compared breast cancer and treatments, I told her how long ago that was, etc. I hope she wasn't too disappointed when she asked if I was now cancer free.....I had to say, well, I DID have a little problem with ovarian cancer 4 years ago, but here it is, 3 years AFTER all of that treatment. My husband seems to think I did a lot of good, I am so "bubbly" ! My nephew's fiancee (her caregiver)was hanging on to every word I said. Very important to experience someone who has &quo
It is hard to add anything more to Debbie's and Bill's comments, but I would like to emphasize the importance of 1)having a medical team you trust, and 2)of moving quickly to activate your support network. And realize that they may not be who you expect! Close relatives may experience shock of their own. Think about what you really need (information? a listener? help with practicalities?) and then think about who could help. My best support came from acquaintances who had similar experience to mine, and from friends who could and would provide childcare and meals, my most immediate needs. I also found that diversion helped - my family and I took up a new activity together, which we had planned before my diagnosis. It's a funny line you have to walk - partly keeping things as normal as possible, and partly knowing that "normal" is over.
I am 30 years "post breast cancer" treatment..had several nodes involved, so I had 4 months of chemo and the Adriamyacin also damaged my heart....I suspect the radiation therapy did some damage also, since my left breast was involved. After treatment I was sure I was going to die soon....I spent too many days depressed and closed up in my bedroom, thinking Woe Is Me..looking back, I should have been put on antidepressants, I wasted so much of my life moping. 2 years later, I discovered breast cancer on the other side...the mastectomy was a "no-brainer", my husband whole heartedly agreed GET RID OF THEM! I had immediate reconstruction, although I regret getting silicone implants..bad bad bad...after rupturing, I have saline which are much better. One of my biggest mistakes was (probably for my husband and young kids) "pretending" to be OK,even though I felt like crap........remember to think about YOURSELF also!
I was diagnosed with non-small cell lung cancer with metastasis to the brain in August of 2010. I've had no signs of lung problems and am a very healthy person. As my head was reeling, I had to make serious decisions about how to go forward at the same time. The best advice I received is "there is no one right way."
I am now in remission and life has returned to as close to normal as it can get.
I wanted to share my experiences as I went through it all. I kept a public blog to update family, friends and curious strangers on my progress. I still keep it updated with check-up results.
There were many coping mechanisms I used to get through this ordeal. I put together a free booklet that can be downloaded at www.quicktipsformanagingcancer.com that reviews the techniques I used to deal with cancer procedurally, physically and psychologically. I mentor other lung cancer patients and visit cancer patients during their chemo treatments at the hospital each week.
I find that helping others by listening to them and sharing experiences is a healing process for everyone involved.
When I would sit every morning at 7:00am in the waiting room with my gown on and rear end exposed I realized a certain sense of empowerment. A feeling of forboding and sadness permeated the room. Some people would talk, some would cower. Some had no hair and wore bandana's. Some were bald and didn't care. Most were just plain scared. I have prostate cancer and the waiting room was a radiation oncology room in a hospital in Portland. Every day for more than 8 weeks I witnessed all kinds of emotions. I was more interested in other people than myself. How were they coping. Were they scared. What kind of cancer did they have. Some would engage me and some would refuse to answer my questions. There was crying, anger, and a multitude of other feelings. It was an eye opener for me. I was dreadfully fatigued from my radiation. I cried as well. For others as well as for me. I was alone, others had family with them. The families anguished for their loved one. I drew strength from all of this. I began to take control of MY LIFE. I became very positive about the whole experience of having cancer. I was not going to be defeated emotionally by the cancer. The cancer itself might get my body but not my emotions. I have been away from treatment for 6 years but now in recurrence. I refuse to give the cancer any power from worry or feeling sorry for myself. I am a grateful cancer fighter. My father died from prostate. Two brothers have prostate cancer one of whom died. Both son's have BPH.
In 2001, I was diagnosed with triple negative stage B2 breast cancer. Two lymph nodes were effected. I had a lumpectomy, chemotherapy, and radiation. I was convinced that I would die in two years, as was the case with my sister, and a good friend. Then I decided that since I was only 61, I still had some good times coming. My husband was very supportive. I started being more optimistic about beating cancer. Here I am 12 and 1/2 years later! The adreamycin caused damage to heart muscle and since 1 1/2 year I have a pace maker/defibrillator and doing well. Keep up the good thoughts. Triple negative can be hard to beat, but it can be done
Hello- I am 16 years (in Oct) and 5 years from 2 lung cancers. With my second cancer I also had to have a pulmonary artery resection-and chemo followed with Cisplatin and Navelbine for 4 months. I have been a phone buddy at lung alliance and also I'm an advocate with ACSCAN in RI. I have told my story to reps and senators and have also testified in front of the Finance Committee in RI.
I agree that after you chose your doctors please make sure that you bring someone with you, who you trust, to each appointment with you. Bring lists of questions and if you have to please write down the answers. Change doctors if you don't like the way your are treated. If you don't get an answer to a question, insist on one, esp. about treatments that are proposed for you. Eat as well as you can and drink a lot of fluids. Maintain as much of a normal routine as you can until you can't. This will help you through many emotional times. You will most likely feel your emotions are all over the place. This is very normal. Don't be afraid of reaching out and talking to someone who knows about these. Treat your self with kindness and get plenty of rest, if you can. You can keep a positive outlook by knowing that your are doing the best that you can in a very tough situation. Remember also that cancer now doesn't mean an immediate death sentence. Many many cancers are cured and some people live with "chronic cancers" their whole life. You can do this!!!
I am now 2.5 years after diagnosis, chemo therapy, and stem cell transplant. Keeping busy has been of great benefit to me. Volunteering is a wonderful way to help others, while also giving you a real good feeling about yourself. Being able to make a contribution to society again is remarkable therapy. I look at each of my volunteer responsibilities as giving me another extension to my care team. All of this has helped me to stay focused on things other than my cancer treatment, recovery, and follow-up. Even days that I do not feel real great, I push myself so as to not start feeling sorry for myself. By the end of the day, I usually have forgotten why I was not feeling 100%! There are many volunteer opportunities available; good luck in finding ones that work for you.
Thank you for asking.....
My advice would be:
1. Don't be afraid to advocate for yourself and your healthcare. The doctors are people, too, and they don't always know everything about you or your case.
2. Always take soemone with you to every appointment to take notes for you. Have questions written down in advance that you want to ask.
3. The emotional rollercoaster is one of the most difficult things. You don't feel "sick", yet - you may die. Take time to treat yourself and give yourselg permission to "play the cancer card" and tell people "no" when you don't feel like helping out or participating in something. Make sure you do have a supportive and positive group of friends and family around you.
4. Remember: Staying positive does NOT mean that you have to smile and laugh all the time. It means that you decide that YOU are going to fight and beat cancer. You can do it!
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