I am a CASA, a Court Appointed Special Advocate for abused and neglected children. I work with children who have been removed from their home and their parents by the Department of Child Services as their living environment is considered unsafe. I represent them in court. This is a volunteer job.
As a nurse, I work at a residential treatment center for minor children who have also been abused and neglected most of their lives. Their histories are horrible, many were being raised by drug addicted parents, some of the children have gone to dumpsters to find food for themselves and their siblings, some have been sold into sex trafficking or to their parents drug dealers for sex. Some have spent their lives in multiple foster homes, some were abused in foreign orphanages before being adopted. Some were born addicted to cocaine.
I just returned from a national CASA Convention in Atlanta Georgia. They had three plenary sessions each day, which is unusual. Most conferences have one at the opening of the conference or maybe once daily. These sessions are attended by sometimes a thousand persons at a conference. Usually these sessions have important or famous guest speakers. I listened to more than 6 of these speakers. Many had been on Opra or CNN, most had written best selling books, all were famous in their own right. All were very successful adults.
All but one of the speakers had also been an abused and neglected child. Most had been in foster care.
It is said many of these abused and neglected children grown up to be unemployed, living in homeless shelters, in jail or in mental health institutions.
What was different about these individuals? They had all had all had difficult childhoods but had grown to become overwhelmingly successful adults.
All of them had had one person in their lives who had treated them well, who believed in them, who supported them, who told them they could one day succeed. Most who had made a difference to these speakers had just said something to them, sometimes just a few sentences.
I left the conference feeling how important maybe everything we say to another person is. We might be the one person who says just a few words that changes someone’s life.
I also have a friend who recently lost her daughter. She has been affected by just short statements people have made. Many statements have caused her pain, though some have helped.
It made me think of us as cancer patients. I know I was negatively affected sometimes by things people said…”I know you will survive this if you just think positive”, or “You are so lucky, you probably enjoy every day because you can live it like it’s your last”. Then there were the people who were silent but just stayed with me and let me cry…they helped me.
I’m sure all of you have been affected either positively or negatively by things people have said to you or done for you or to you. What has been helpful, and what has been hurtful in your dealings with people, even family, since you have been diagnosed? Who has made a difference in your dealings with this disease?
I would love it if you could share that in comments here. What have people done that has helped you in your struggle against this disease? What have people said or done that’s had a negative impact on you?
In May I will be 18 years cancer-free after a terminal diagnosis. I am often told how blessed I am, how God found favor in me that led to my survival. I agree 100%. I am so blessed. I believe in God and feel that he blessed me with surviving my cancer long enough to see my kids graduate from grade school, Jr. High school, High School and even college! I even was hear for my youngest’s wedding! I celebrated my 30th wedding anniversary!
But a thought just occurred to me the other day. Have all of those who have told me how blessed I am to have survived cancer thought of how blessed they are never to have had cancer? To have never dealt with the Mother of All Surgeries, to have never had to deal with chemo therapy, to have never learned to live with uncertainty for years as we continually get tested for recurrence?
We do survive cancer, but we really never get to go back to our before-cancer normal. I remember missing my “normal” life after I was diagnosed and while I was in treatment.
Most of those who tell us how blessed we are also seem to assume that once cancer treatment, the surgeries and chemo are over, we can just go back to our “normal” lives, cancer is behind us. But in a sense it never really is totally “over”. We will have the designation “cancer survivor” for the rest of our natural lives. Cancer will always be a part of our lives, though the part does get smaller as the years go by (I’m here to tell you that!). We are blessed, but we are also changed.
Being a nurse and working for several years in an ICU, I saw many people die. Before cancer, I thought I’d want to know beforehand that I was going to die, I’d want to get my life in order. I worried about dying suddenly and someone coming across my many years worth of handwritten journals. They were mine, and I didn’t want anyone else to ever read them. Writing had just always been my way to cope with my struggles. I think I thought that knowing ahead of time would give me some sense of control (I am kind of a control freak). I could say goodbye to everyone. So, I guess I wanted to die slowly, predictably?
Having cancer changed that for me. Initially I was not expected to live, I was told I was terminally ill. Even after treatment I knew my cancer had a high recurrence rate and that I could still die slowly of cancer. Contemplating dying slowly was contemplating all you would lose. Saying goodbye to and abandoning your husband and children. Letting go of all of the plans you had for the future….going back to school, a job you always wanted, travels you had planned, retiring some day. I spent a long time contemplating and grieving for all of the things I stood to lose, that could be taken away from me. Saying goodbye to so many things.
My father died some years after I finished treatment. He was in his recliner watching TV one night, and yawned. My mom asked him if he was ready to go to bed. He said in a little bit. Then his heart stopped. One minute he was alive, the next dead. He didn’t suffer any pain, wasn’t ill, hadn’t had months and months of treatment for an illness. He didn’t know he would be leaving that night, so didn’t have to contemplate his losses. I wanted a death like that.
I did some research, though. Unfortunately, 90% of us will die of chronic disease, only 10% of us die suddenly. Before my cytoreduction surgery, I’d already spent time contemplating losses and contemplated possibly putting my family through a long period of time where they would watch me suffer before I died. Before my surgery, I prayed that if I was going to die of this cancer, that I just die in surgery and get it over with. I burned all of my journals before my surgery.
But I lived. In May I will be an 18 year survivor. Now though, I hope to be in that 10% that doesn’t contemplate their death, doesn’t expect it. I want to die in my sleep!
Cancer is in some ways different from other diseases. Nowadays no one will call us “cured”; even after 5 years cancer free, we are just long-term survivors. So we never feel cancer is really “gone”. I have survived long enough now that I don’t worry about my cancer recurring (17 years NED), but I probably still occasionally worried about it recurring at 10 years. Our perspectives as cancer survivors may be different from those with other diseases, even chronic ones. It is always in the background of our lives.
I’ve tried to come to terms with a fear of dying, especially when I was younger. I think I am fortunate to be a nurse. I am very aware life is not fair. I’ve worked in a lot of ICUs and seen many people die before their time. A headache was really an aneurysm that ruptured and caused death, a child died trying to retrieve a toy from a 5 gallon bucket. I’ve seen many people with chronic diseases that have left patients with no quality of life. Physically, once I got past the cancer surgery and all of the chemo, I have physically had a great quality of life. I was in New York City and walked past the Twin Towers on September 6th, and just a few days later 3000 people who were healthy and working lost their lives. When I fear dying I try to remember these things.
Life is short and we are all here just here on a journey. I believe in a soul and am Christian, so believe in an afterlife in Heaven. I’ve read many books on heaven and near death experiences that have given me confidence in my beliefs. I’d be happy to share m book list!
I read a quote the other day I loved, “I am not a body, I have a body. I am a soul.”
Happy Holidays! It’s been almost two months since I’ve posted here, forgive me. We all get busy during the holidays, but I was also working a lot of overtime. People helped me have time off I needed so I tried to help others have the time off they needed, and the hours added up! I worked 60 hours the week of Christmas.
We have one get together, my husband’s family of about 40 gets together one day near Christmas. This year my daughter hosted the gathering. I think post cancer, I have become very aware of time and the passing of time. At the gathering there were many children I didn’t know! They were the children of my nieces and nephews. I was remembering my niece being three years old when I met her and hiding behind her mothers legs when I approached as I was a stranger. Now I think she is in her early 30s, has two children and is married for the second time with step-sons. Another niece of mine has 5 children, another 3, another 2 more. The children have come so fast and when I only see them once or twice a year I don’t know all of their names or even who they belong to!
My mother-in-law (we’ve dropped the “in-law” and I refer to her as mom) is in her 80s. She was 10 years younger than I am now when I first met her. I remember my children being infants when I first attended these family gatherings, now my eldest is almost 30.
Time passes so quickly. And the older I get the more quickly time passes…the benefit to that is that winters finally seem shorter!
But I am more aware of time I believe related to my having cancer. I think of how many experiences I have had in life and how many changes I’ve seen and all of the history I’ve witnessed.
I think that is a good thing. I am blessed to have had all of this extra time.
I just had a birthday, and I am now 59 years old. I think of all of the changes I have seen in my life, many changes just in the last 17 years that I never should have seen. I was told I was terminally ill 17 years ago. I wasn’t supposed to have a 59th birthday! Usually I’ve celebrated every year I get older as an extra year I wasn’t supposed to have. I am one of the aging cancer survivors!
We have more long term cancer survivors now, that will be interesting as America ages. For fun I looked up “aging cancer survivors” on Google, and was surprised at what I found. I expected to read of celebration, but instead it talked about how cancer survivors age more quickly as a side effect of treatment. Well, I don’t feel I’m aging more quickly!! Someone recently told me I looked 40 (never mind the fast food cashier who smiled and said she was giving me the senior rate I wasn’t old enough for that same week).
My husband and I recently decided to start working part-time vs. full time. This means I gave up my job of hospital Director of Education and Clinical Nurse Specialist. They kept me part time for awhile, but it really is a full time position. I have a new part-time job working in an inpatient psychiatric pediatric hospital. The patients there are children who have really had very difficult childhoods; many were abused physically and sexually and were neglected. Some of their coping mechanisms have been suicide attempts, self harm, sexual promiscuity and drug use. This hospital has wonderful staff and a wonderful program that really helps these kids who have been through so much. It is a privilege to work there.
With my extra time I am also doing some volunteering. I drive for Meals on Wheels twice a month, I’d done that prior for ten years, and it was a good experience. I am also a CASA, a Court Appointed Special Advocate for abused and neglected children, and am now advocating for an 11 year old girl who has been abused and neglected most of her life. That is something I had done previously but became too difficult to do when I was working full time.
But I still have a lot of extra time to do things I love, like reading. I’m planning on playing my piano more and attending the YMCA more often and getting in better shape. I also want to work more for the Appendix Cancer Connection!
I just came back from Baltimore Sunday night, I attended Heat It To Beat It, the annual fundraising walk of Dr. Sardi and Mercy Hospital. The walk raised funds for research into cancers that can be treated with HIPEC: appendix, ovarian and colon cancers. Cancers that spread into the abdominal cavity. Most represented at the walk is appendix cancer. Next year is their 10th anniversary. I’ve so far been to 6 out of the last 9 walks representing the Appendix Cancer Connection, my organization, there.
I often speak to appendix cancer patients who ask me if I know of long term survivors other than myself. They feel badly they haven’t been able to talk to anyone who has been through what they have.
I suggest you go to Heat it to Beat It if you can next year. I was there 10 minutes this year and met nine and ten year appendix cancer survivors. Below is a picture taken of appendix cancer survivors, there are many. And just ask anyone with a red survivor T-shirt to talk to you, and they will! It’s a support group too!
There is HOPE there! Survivors!
For some reason I recently got to thinking about guilt in regards to a cancer diagnosis. Did we do something wrong to make this happen? Did we not eat right, did we not exercise enough, did we smoke? I remember seeing a survey for appendix cancer patients, and many had smoked before diagnosis.
I smoked for many years before my diagnosis, and did not quit smoking until 2 years after my diagnosis. If smoking is related to stress relief, having a cancer diagnosis makes it VERY hard to stop smoking. I also told myself chemotherapy can cause cancer (it is carcinogenic), and all of the radiation for CT scans was carcinogenic, so I told myself I was at least going to choose one of my carcinogens. I finally did quit after 2 years, and quit for 6 years, then started smoking again for a year (hoping to lose the weight I gained when I quit, didn’t happen). I’ve now quit again for I think 6 years? Now I don’t want to smoke and don’t even think of smoking, though I still do enjoy the smell of cigarette smoke.
Interesting, so many people are made to feel guilty if they smoke and get lung cancer, but actually only one in 10 heavy smokers get lung cancer in a lifetime, 9 out of 10 don’t. I recently talked to an oncologist who said he has many lung cancer patients who NEVER smoked, and many newly diagnosed who quit smoking many years ago. One of my physicians recently died of lung cancer 2 weeks after he was diagnosed, it had metastasized to his brain. He had never smoked. The oncologist felt smokers should not be made to feel guilty.
I think we need to be careful not to make ourselves feel like we had any part in creating our cancer. People who do everything right and have healthy lifestyles get cancer, children get cancer. Cancer is never fair and no one deserves it, not you, not me. We need to be gentle with ourselves.
Just realized I’ve been gone for over a month! Please forgive me! I’ve started working part time, but am ending up busier than when I was working full time, With good things, though. I did a bike tour, am getting ready to go on a backpacking trip, I’ve been working as a CASA (Court Appointed Special Advocate for abused and neglected children, a volunteer job), will go to a CASA convention in Fort Wayne and will soon be coming to Baltimore for Heat if to Beat It! But today I wanted to talk about finishing treatment for cancer.
I don’t know about others, but my biggest struggle with cancer was after I completed treatment. I began my struggle the day I finished IV chemotherapy.
Interesting, because everyone who knew me thought I should celebrate finishing treatment. I’d made it through the big surgery, the intraperitoneal chemotherapy, the many months of IV chemotherapy. I’d been in treatment for the better part of a year. Now I could go back to my life cancer-free with a greater appreciation of all things.
After my last chemo treatment, I took myself out to eat. I always drove myself to and from chemo treatments and went by myself, so on my way home I took myself to a nice restaurant for lunch. But, I didn’t feel like celebrating when I got there. I felt disappointed, maybe even afraid. I knew the surgery had removed cancer, and the intraperitoneal chemotherapy and IV chemotherapy had been killing any cancer cells that remained. Now nothing was killing cancer.
Truth be told, I almost would have preferred to remain on chemo indefinitely. Once we figured out how to get rid of my chemo side effects, I lived a normal and very comfortable life on chemotherapy. It was only a few hours twice every three weeks. When I finished chemotherapy, I had no more tools. I was no longer fighting my cancer. If any cells had survived, they could grow and cause a recurrence. They could kill me. I’d read my cancer had an 80% recurrence rate.
I began to live a life of uncertainty. I wasn’t really sure if I’d be here and healthy in 6 months, if I could plan a vacation for next year, if I should start school to work on my Masters degree, which would take 3-4 years to finish. I had CT scans at first every 3 months, then every 6 months, and finally just once a year. But for many years, I only felt I could plan my life based on CT scans. If a CT scan was negative, I felt I could plan my future until the next CT scan. I always felt a CT scan was like going to court to hear my sentence. A negative CT scan meant I could continue my life on “probation”. A CT scan that showed more cancer would sentence me to more surgery and chemo and treatment. A CT scan that showed cancer might even be a death sentence. I’ve learned pretty much all of us feel that way about our CT scans. We’ve even named the fear before CT scans as “scanxiety”. I’ve known appendix cancer patients who are in bed for days before or after their CT scans, who ask for Xanax to take around CT scan time.
I understand why cancer patients often start using all of the on-line alternative treatments they read of….raw vegan diets, various supplements and syrups, controlling their thoughts and using “mind body” techniques. When we no longer have any tools, we look for new tools or more tools. I only believe in treatments I can investigate that are proven by research to be effective, so have never used alternative treatments, but I understand those who do. I think it helps deal with that sense of uncertainty.
Over time after finishing treatment I did stop living with that feeling of uncertainty, but it took a long time.
People need to understand that when we finish treatment, we are not done with cancer. We are not back to normal life before cancer. We still need support.
I’m moving forward to an new era in my life. My husband and I years ago bought a fixer-upper house (remember This Old House?). Well, it wasn’t very expensive, so we paid it off early, and over many years have remodeled and knocked out walls, so it’s a nice house now. Since we no longer had a mortgage, we paid off our cars early and any debt we owed. We aren’t quit retirement age, but my husband and I decided we no longer need 2 full time incomes, and we are betting older, but young enough and healthy enough to enjoy more time off.
So, as of tomorrow I will work part time, only 20 hours a week! I will keep my job, but also got a second “PRN” (as needed) nursing job. I love the idea of my life no longer being my job! It really was as all of my days were 10-12 hours and my job is very stressful. Now only half as much!
I want to do things I have not been able to do while working full time. I was once into martial arts and want to get back into that, it’s very empowering! I am also a CASA, a court appointed special advocate for abused and neglected children who are wards of the state. It’s a volunteer job I did before I started my current job. I loved it and now can do it again! My job has also become more of a desk job over the past year, so I want to get rid of some of the weight I’ve gained and to get back in shape…biking, swimming, hiking! I’ll have time for that now! I have a big list of things I want to do, and love that it’s summer so I can enjoy being outside!
I feel a bit guilty as I know many of you who are reading this are dealing with a cancer diagnosis and treatment and living with uncertainty. I lived with uncertainty for many years, and it is a difficult way to live. I’ve been where you are now.
But I can also be an example to you. You CAN have hope, you CAN survive and live your life again, you CAN move forward. Just take it once step at a time starting now, you are already a cancer SURVIVOR!!!!