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From Both Sides of the Bedrail - an onology nurse with metastatic breast ca

debraocn
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I am an oncology nurse who has lived for more than half my lifetime with cancer. First it was Hodgkins' Disease, diagnosed when I was 25 years old. Twenty years later, after I became a nurse and a patient advocate, I demanded a lesion on my back be removed and biopsied. My doctor thought it was a strange form of psoriasis. The biopsy was malignant, had grown quite large while we argued over whether it was serious or not, and now needed a skin graft. It also needed topical chemotherapy. Five years after that, on my ex-husband's birthday, I found a lump in my breast that turned out to be malignant. I had triple negative breast cancer - not responsive to hormones or monoclonal antibodies. Three years later I find myself dying of metastatic disease.

One of the areas of my advocacy has always been communication between patients and their doctors. I work in a teaching hospital so I have the opportunity on (rare, but fabulous) occasions, to help new oncologists learn how to effectively communicate with those who are newly diagnosed and with those who are learning that the status of their disease has changed such that they have only a limited amount of time left. I am a trainer for the End of Life Nursing Education Curriculum and teach nurses how to help their patients and the family of their patient, deal with an injury or illness that will result in death. Most people who work with the dying know that they must balance this work with something that is fun, rewarding, and life-giving. For me, it was another subject that came out of my own cancer experience at the age of 25. I was newly wed and after treatment, I decided I wanted to have children. It became very important to me. It was only then that I found out I was probably infertile from my cancer treatment. I was horrified that my husband and I had not been counseled about this before I started treatment. The doctors made it seem as if there was nothing to be done about it now and I should just be glad that I was alive. I hated this attitude and started doing research to see if there was any way I could have a child. I went back to school, where all my papers had the repeating theme of fertility, life after cancer, and when informed consent was really not informed. The risk of infertility was listed as one of many possible side effects of my treatment but no attention was drawn to it and I received no teaching about any of the possible side effects of treatment. In fact, when my husband asked the doctor if there was an alternative to the treatment that was being proposed, he was told, "The alternative is she does this, or she dies." That was enough to send my hand searching for the pen to sign the consent.
For the past ten years or so, I have been teaching patients, in small groups and at retreats, about the sexual side effects of treatment and how the treatment can impact sexuality and intimacy in their lives. My teaching balances my life -- coping with death, creating life. I have been asking patients to complete a post-test with 2 questions which I had hoped to compile and present as a master's thesis in nursing. Since I will not finish graduate school, I would like to start a discussion here so that we can teach each other about doctor:patient communication when issues of life and death are involved.

The 2 questions were:
If you completely trusted your healthcare team, and were in an environment where you felt comfortable asking any type of question -- what would you ask your doctor (or healthcare team) about sexuality and intimacy after treatment for cancer?

If you completely trusted your healthcare team, and were in an environment where you felt comfortable asking any type of question -- what would you tell your doctor (or healthcare team) about how cancer has impacted sexuality and intimacy after you were diagnosed with cancer?

For those who are dealing with a recurrence that will result in death, I would like you to answer these two questions:
Please tell me about some situation where your doctor (or healthcare team) helped you deal with your recurrence and impending death.

AND

Please tell me about some situation where your doctor (or healthcarea team) caused you pain as you tried to deal with your recurrence and impending death.

Please respond to all of these questions if possible. Remember, the goal here is to learn from each other and to support each other, whenever possible. Be brutally honest, if you must. My goal is to make cancer care better for those who are diagnosed today, ,or tomorrow or the next day. I will keep trying to improve cancer care until I die. It's why I became an oncology nurse. In 2005 I received the Oncology Certified Nurse of the Year Award so I must be pretty good at it. I know that I love doing it and care passionately about the quality of cancer care in this country.

Explore topics in this discussion:

Cancer Surgery Chickenpox Psoriasis Pancreatic cancer Breast cancer Suicide Chemotherapy Menopause Pain Tuberculosis Palliative care Infertility Lung cancer

22 replies

beebie

First of all, I was really taken back by the bleak mood and tone of your post. You dont sound to me like you are dying from cancer! Sounds to me like you are still living with it. You have been living for 20+ years and mostly recently since your current diagnosis for 3 more with it. Answer this question: When are you dying of cancer? You sound like the expert.... In my opinion you are dying when you are unconcious, in bed and gasping for your last breath. That is when you are dying!

Not, when you are as engaged in life as you sound. Not when you are going to work and thinking about conducting research. Hell, we may be all lucky enough to live long enough to be killed by a car. In that case you could say that we are now dying from a future car accident! I was first diagnosed when I was 29 and now I am 53. Sure I am dying from cancer but so far it has taken 24 years and I am not thru with life yet. Yes I am a person who has a reoccurance that will lead to death, but the beauty of metastatic cancer is that you dont get a date stamp when you are to expire. I hope I keep living many more years. I know that is the way many of the women on this site feel.

So, that is just my way of saying you sound like some one who has adopted pessimism as a way of coping. But, my advice is that you should still think of yourself as living with cancer! That is what makes us so many women on this site so incredibly special! We know we are going to die more certainly and earlier than most people, but we choose to go on living as fully as we can despite this grim knowledge.


Reply # 1. The sexual side effects were never discussed, but I assumed that there would be changes from hormonal therapy. No estrogen= poor sex. I didnt think to ask because I thought I knew the answer. I had a lot of libido and I figured it would take a lot to reduce it.

Reply # 2. My doctor should have told me that my vagina would shrivel up along with my sex drive. Intercourse would be painful in a way I had never experienced. Of course lubricants, a patient partner, etc. might enable me to engage in intercourse, but it probably wont ever really feel pleasurable again. Also the sensation of an orgasm will be greatly diminshed and your overall sex drive will be much lower.

Reply 3. I was very hurt by the response of a very eminent physician at Sloan Kettering who sat me down in his office after my exam and said in a very cavalier way " well go home and figure out who to give your pearls to"! I was devasted. Eventhough I had already gotten the bad news about the extensive metastasis from several other leading oncologists, this one's attitude was insensitive and cruel. I sent him an expensive tie with "wishbones" on it and told him if he couldnt dispense good news at least he could hand out some good luck!

To my great satisfaction, 18 months later the course of my disease has not gone has he predicted. Another outstanding doctor in Boston that I saw around the same time had an entirely different attitude. In particular gave me some hope based on the profile of my disease and suggested I still had time to wear the pearls and enjoy them!

AJS

Great post Beebie!
It's easy to get caught up in the sadness of our situation and then, if we're lucky, someone like you reminds us of what an amazing job we're doing every day. They don't say "one day at a time" for nothin'. Thanks!!!

marnie

Debra,
I am at work and don't have time to answer your survey questions but will come back later to do it. I just had to quickly respond to you as I feel exactly as you do. I am a former oncology nurse, chemo nurse and OCN. I am also a triple negative, metastatic breast cancer (bone, liver, lung and waiting for the brain).
Beebie feels you are a pessimist. You are NOT! You are a realist and so am I. And as far as I am concerned, there certainly is no "beauty" in metastatic breast cancer. We all know where it leads, whether you are "date stamped" or not. No, I am not some militant, cancer crazy lady. I just do not welcome cancer anywhere in my life but it came anyway and so I deal with it. Selfishly, I would much prefer being on the nurse side of the equation like I used to be instead of the patient side and my 15 year old daughter feels the same.
Debra, I appreciate the work you are doing in getting real answers to questions that need to be asked.

jacee

Hi,
Beebie, I didn't get the negative impression you got from debracon's post. I think it is a well thought out dissertation on her situation and knowledge. What I do know is that everyone views their cancer differently and reacts to it differently.

My first diagnosis was in the fall of 2005. Went through 8 chemos and 33 radiation treatments. June, 2007, I find I have a malignant pleural effusion and mets to my liver. While they have stayed pretty well under control, I am now looking at decortication surgery because my lung will no longer expand. I have managed to hold on to a positive attitude because I keep telling myself, I can't change it, so I need to adjust to it. However, lately, I can't walk and must use a wheelchair. I can barely breathe and spend so much time sleeping I don't do much else.

I, personally, get tired of the attitude that if you are anything less than super positive about your disease, you are, somehow, doing a disservice to yourself and other bc women. I'm tired of being told to put on a happy face when I sure as hell don't feel like it. I feel half dead-half alive. I'm not ready to quit fighting, but I do know that no matter when I die, I am dying now. Sure, we're all dying from the day we're born, but this is different. I want to know what my doc thinks my time is. I realize no one can say what day, time, etc. but I know they have an idea in months, years, or whatever. Maybe others don't want to know. I do and that's my perogative. If all we can post on sites like this are our positive feelings then we are wasting our time. You can't tell me there aren't times when you feel devastated and lost. Only recently have I cried my eyes out and almost want to quit. That's just the way this disease is and the way humans are.

debracon, if I can answer your questions.

First off, I'm a lesbian. I have been in a stable relationship for 12 years. We have 2 adult children. After menopause, my libido died. Nothing I did could get it going again so I know the cancer didn't cause it. However, I have talked to my onc's nurse practitioner about it. I love my medical team. They have been wonderful throughout this. Carla, the np, didn't turn my questions away. However, I do know that no one wants to acknowledge, no less discuss, lesbians and sex. Since my bc is estrogen positive, there really is nothing she could suggest such as testosterone which I've read can help. So here I am. I feel badly for my partner. At least before bc I could "make myself" get involved. Now that I can barely breathe, it's harder to engage in any activity. I want to for her. It seems so unfair to totally lose this part of life.

The thing I am most upset about right now with my medical team is they don't want to answer my questions. My onc even went so far as to tell me she didn't like to give bad news. Well, excuse me, she's kinda in the wrong profession to avoid that. I have a right to know, a legal right at that, to be told my status. She is a very soft spoken woman and I do have the highest regard for her but I think she should tell me, to the best of her ability, where and when I'm going.

I'm sorry if this post tends to sound negative. But it is also my right to handle it how I feel I must or even sometimes, how I have no choice in what I feel. Putting on a happy face doesn't cure me. Same said for being depressed and sad. All the same, I feel what I feel and I am entitled to that.

I wish everyone the best. And debracon, thank you for your many years of working with cancer. It certainly must take its' toll on you.

Beebie, I hope you continue to do well and however you deal with your condition is ok. No one can tell you how you should feel. But like I said, with metastatic bc, we are dying whether we want to think or acknowledge it. If you can keep your emotions in check and consistantly be positive, good for you. I'm sure in some ways, it does make it better for you. How debracon keeps working through all this is beyond me, but just because she's able doesn't mean she isn't dying. Maybe not today, but always possibly, tomorrow.

Take care all.
jacee

marnie

I should be working but had to peek back into the site to see the recent responses. I was thrilled and amazed by what jacee had to say. I couldn't have said it any better. I am so tired of hearing how great I look from people who know what I am going through (who wouldn't look good with makeup and a great wig). It's as if I'm an exception to the rule by keeping myself up. Hello, I still have my pride intact. Sometimes I would love to whip off my wig and show them just how "great" I really look. If you are not "fighting the fight" and participating in every walk, run and whatever else comes along, then something must be wrong with you. Pink is not my favorite color...so what? We all do what we have to do to get through our individual situation. Our friends, supporters, living situations, income, health coverage, and so many other things impact how we get through it. For some, the road may be a little easier than for others and thats life.

MaryKathryn

My therapy started with tamoxifen and lupon, eliminating appx 80% of the estrogen in my body. Though I was perimenapausal, I hadn't expected the sexual side effects and felt them more acutely because of the suddeness of the effect of estrogen loss. The loss of libido and difficulty with orgasm was a particularly bitter pill given all the other emotional trauma of the cancer diagnosis. The one place I felt "safe" and truly loved was with my husband, so what a bummer! It didn't occur to me to ask about the sexual side effects and I don't know that I would have been entirely comfortable doing so with the conventional 62+ year old doc. He is entirely patient centered but doesn't volunteer much info. Instead he waits for clues to what his patients wants and seems to need to know. This is where a good nurse would have been helpful. I have found them to be the best source of good practical advice. Since I wasn't being treated with chemo, I just saw the doc.

1. I would want the team to volunteer the sexual side effects, as they volunteered the others (hot flashes, etc). My ob/gyn introduced me to the estring and vaginal lubricants...thankfully I was still seeing her.

2. I would tell my health team how difficult they made the loss of sexual function on me emotionally. See intro above.

3. See above.

4. I was diagnosed initially with extensive mets, so just got the whole whammi of the message at once. Fortunately I didn't experience many of the hopeless conversations that seem to be so common. I visited with 3 oncologists, all of whom encouraged me to maintain hope. However, the look in the eyes of the radiologists and others told me how serious the situation was (is). I did tell my regular doc that I never again wanted to hear him say "there is no cure" for my disease. I believe there absolutely is a cure. We simply don't know what it is yet. Hopefully we will learn what it is before it is too late for me

debraocn

Thank you all for your responses. I would like to respond to all of you, but at the moment I have a houseful of company. Family is here from NJ and Wisconsin and friends from Ireland. I do want to repeat something I learned from many different people over the years. Feelings are not to be judged as good or bad. Feelings just are. You cannot control them, no matter how hard you try. They just need to be accepted for what they are. Whatever you feel is normal for you.

I also believe there will be a cure for all cancers some day. Cancer is not one disease. Even breast cancer is now believed to have as many subtypes as lymphoma does. Researchers are looking at how cells mutate on the genetic level and how that process can be blocked.

If you look at medical history, there are several major illnesses that caused many deaths that are now rare or easily treated. One is smallpox. Another is tuberculosis, also called consumption. Polio is controlled by vaccine today, but was a dreaded disease many years ago. We have a chickenpox vaccine today that we did not have 25 years ago. All of this gives me hope that cancer will at the very least become a chronic illness. I'm not sure whether this will happen in my lifetime. As some of you have said, when it's hard to breathe or a painful day, it's hard to be optimistic. When I have a good day, with good energy, I'm ready to march on Washington and push for progress in health care.

Please continue to post. How can we make this "fight" a "joint venture" between patients and doctors, with open and honest communication?

beebie

I will just reply to those who think I am a "pollyanna".
My motto is CHEER UP FOR THE WORST IS YET TO COME! have a nice day.

Terri39

Hi DebraOCN,

No sexual info for you but bless you for talking real about your death. Ladies, when we run out of options for treatment, as some of my dear friends have, you know you are dying. It is part of our life. Yes, always too soon with cancer but some of us will come to terms easier than others with this reality. Personally, my biggest fear is the pain and suffering. While I don't know your exact diagnosis Debra, I hope your death, as all of ours, is met with dignity and embraced with peace.

I guess I've changed the subject but am responding to beebie's initial posting.

dfleaman

Debra,
I have had bc 4 times now. 1st time stage 0 biopsy and 34 radiation on right breast @ age 43. Wanted to remove breast but dr said no. 14 months later found lump had breast removed against my dr wishes. I took tomixfin. 5 years later nipple looked funny on right breast had biopsy and had cancer and mascetomy and reconstruction and 8 rounds of cemo. I also changed drs. when I found it the 3rd time. The 3 cancer were not reacurrane they were different types. But Feb of 08 my right under arm started burning now I have mets . Cancer in bones and lymp nodes they choose not to remove.
Answer to your question. Talking to my oncologist is hard about sex. He does not seem to realize that I might me 53 but I have been married for 30 years and it is not becaue I have not been sexualy active. Dr tried to give me anti depressing medicine which I declined. I was not told about the pain of intercourse before my treatment. It would have been nice if dr would have mentioned it. We do many things to help but it is always painful. It is better now than it started out to be because of lubercants. I do not mention it anymore we just try and cope. My gyn was better to talk to than my onc. He mentioned using wax candles to keep the vigina open. I have never use it. but the option is still there. May onc dr could talk to gyn drs. about this problem that most women have that are being treated for breast cancer.

dfleaman

Debra
You are in my prayers. I cannot imagine being in your shoes. I may have mets but I am woking in a profession where I see it everyday.
I am so sorry for you. Keep up the fight. I pray they will fine a cure.

Beachbabe

Wow...you've all said so much...thank you for sharing. I'm in the same life boat as Beebie...I know what we have is terribly serious but refuse to believe I am incurable, I am just waiting for a cure. And while I wait, like the little Who's in Horton Hears a Who, I keep screaming at the top of my lungs "We're here, we're here, we're here!!!!"

Now as far as answering your questions goes: I was diagnosed in February '07 with Stage 4 breast cancer, mets throughout the skeletal system. I was 44 years old and had two young children. Do not pass go, do not collect $200. The ONLY time anyone has talked to me about sex was when I went for my first visit with my (former) oncologist, he told me I had to have my ovaries removed immediately, and sent me to the infusion room for Zometa. An oncology nurse took one look at me and my husband, grabbed a pamphlet, and came over to talk about the importance of lubrication during sex. Hellooooooo? I'm still reeling from the "incurable" speech, have been told I have to have surgery, and am getting hooked up to an IV...the last thing I care about right now is LUBRICATION. The real kicker was, the Zometa made me sooo sick that my husband and I truly thought I was dying. Why did the nurse focus on lubication, instead of explaining "flu-like" symptoms could mean convulsions?

The topic has never come up again, and I'm afraid the sexual side of me has died. The illness has created an even bigger chasm between my husband and me...he is dealing with it with anger (mostly at me), but to the outside world appears to be the doting spouse (totally pisses me off). I think it is VERY important for our medical teams to be aware of the dynamic going on behind the scenes, as it plays a very important part in our healing. I'm happy with my treatment facility which is treating the "whole person"...but even they haven't figured out they'd better speak to my other half and include him in the treatment...ask the right questions and realize that the death of your sexuality is a major hit for a women to take.

Thank you, for asking the question and may God bless us all~

debraocn

Beebie:

Thanks for your very thoughtful post. I am not a pessimistic person. In fact, I'm very upbeat. I have not made a connection between what I read in the test results (very negative) and how I feel as I live in my body. My only constant reminder is that I am dependent on oxygen. Without it I am gasping for air and feel a tight pressure in my chest. But, having the oxygen on all the time, I am able to do almost everything I did before. My employer will not allow me to work while I am on oxygen. I have argued that this is discriminatory and that I am able to do all of the management part of my job. In the meantime, I am working on projects at home and keeping in touch with coworkers so that I know what is going on at work. I'm ready to go back whenever they will allow me to.

Because I am an oncology nurse, and because I do a lot of teaching in my job, I have cared for many breast cancer patients. I recognize signs of impending death. I know that I have been close to death several times and was fortunate to recover and worked to get my strength back. In some ways I "know too much" for my own good. I know that my prognosis is poor this time. I've read the literature and there are no protocols out there for my situation. I am on an experimental protocol and I'm willing to try another experimental treatment if this one stops working. I am living my life and I am grateful to live it. So I don't agree with your assessment that I am pessimistic.

Your answers to my questions are very helpful. I gave my lecture on grand rounds last week and I polled the doctors as to whether they talked to their patients about sex. All of the attendings raised their hands, claiming they talked to their patients about sexual side effects of treatment. I really did not believe that all of these doctors talked to their patients about sex, so I singled one out and asked him to tell the group what he said to his patients about the impact of their treatment on their sex life. It wasn't a whole lot and it wasn't specific enough. Some of the docs said they waited until their patients asked them about it. That was a perfect opening for me. I told them they were probably still waiting because how would a patient know what to ask? The patient has never had cancer before, they have never had this particular treatment before. How would they enough to ask about sexual side effects? It is the responsibiity of the health care team to bring up the subject of sexual side effects and make the patient aware of the body changes that will happen because of their disease and because of their treatment. So every single doctor in the room should be raising their hand because it is the physician's responsibility to make sure patients are aware of the side effects of treatent before they start their treatment.

All of the things that you describe - painful intercourse, changes in your vagina --these things should have been explained to you and you should have been told what to do to make it easier.

Your story about the pearls is one I have to write down in my end of life resource book. As I think about it, I might have sent a fake pearl to that doctor every year on the anniversary date of your visit when he told you to give your pearls away. No note, just a small box with a pearl in it. It would make him think for a while and maybe change the way he talks to patients. In California physicians must have instruction in palliative care in order to renew their medical license. Unfortunately, part of that mandate does not require education in communicating with patients who are transitioning to palliative care.

debraocn

Marnie,

Thanks for your post. My "last lecture" went very well. I wish I had more than an hour but I was able to get the docs to do some role plays. For most of them I played the patient, but for one a psychiatrist played the patient as being angry about having progressive disease and one of the fellows had to talk to him about transitioning to palliative care. During the role play, Rick (the patient) said that if he'd known it was going to turn out like this, he would have gotten a gun and shot himself. The fellow didn't quite know what to say. She thought for a moment and then reiterated that they had talked about the possibility his treatment would not be effective. She talked for about 5 minutes without ever addressing Rick's statement about the gun. I stopped the role play and asked her what she thought when Rick said he should have just shot himself, She said she was alarmed. I asked why she didn't ask him anything further about getting a gun or shooting himself. There is an increased risk of suicide among cancer survivors and the most common method is by gun or by hanging. I then took her place in the role play and acted out the questions that she needed to ask Rick to determine if he was serious about shooting himself. You need to determine if he has means, manner, and a specific plan.

The last role play was with a patient who wanted to know how much time she had and what it would be like at the end. The fellow who was in the role play with me was literally squirming in his seat. He would tell me that there were several different scenarios for how it would be at the end but then he wouldn't give me any specifics. As the patient, I kept asking him to be more specific. I told him he was being like Sen. McCain in the debates--he wasnt answering the question that was asked. We did this role play for at least 10 minutes but I still could not get him to commit to a date when I would die or the symptoms I would have at the end of my life. But the role play brought out why I wanted to know and the fact that I worried about it quite a bit. It also showed how uncomfortable the fellow was with the question. I think all the other docs were grateful they weren't chosen for this role play.
I think overall the lecture went well. I wasn't able to get all of my information in, but I did get to a list of phrases that are used instead of saying "die" or "death". Some of them were pretty funny.

A friend of mine who is a seasoned oncology nurse came with me and sat in the back to watch the lecture. She gave me some good feedback. Nobody left the lecture. There were 4 doctors who were paged during the lecture and each of them came back to the room as soon as they dealt with the page. She said everyone paid attention and were very interested in the role plays.

I saw my oncologist in the hallway a few minutes after the lecture and he gave me a hug and said that he didn't know I had so much to say. He seemed to be impressed with the lecture.

For me, it was a good experience. I was able to share some of the horror stories of my 17 years as an oncology nurse. I told them why they needed to collaborate with the nurses. There were too many times when I would walk into the patient's room after a physician had delivered bad news. I had no idea what the MD had said so I didn't know if the patient heard it correctly. And, nobody should be left alone after hearing bad news. If a family member is not present, then the nurse should stay in the room to answer questions and support the patient. I told them about being a new nurse and having a patient try to kill himself by slitting his neck and his wrists with a razor blade. I don't know why, but when I looked at the patient covered in blood, with blood on the wall and the lamp and the bed, I got angry. I told the patient he had to help me clean him up because I would need three hands. Since God had seen fit to only give me two I would have to borrow the use of one of his hands. While I cleaned the wounds and put steri strips on, I talked to this man and asked why he had taken a razor blade and tried to hurt himself. It turned out to be the most amazing experience. I learned so much about this man and I learned that, even when I thought I didn't know what to say, I really did. I only had to open my heart and show this man that I cared about him and I did not want him to kill himself on my shift when I was his nurse. I laughed when I said this and he was able to laugh too. This man really did want to die. When he was discharged, he took all of his pills while he was home alone for a few hours. His wife came home and found him. She called 911. He came through our ED and then spent some time in our ICU. When he was able to be extubated, he was discharged again. About a month later, his wife went out shopping and left him home alone watching TV. When she came back, he was dead. He had overdosed on his medications.

Telling this story immediately after the role play with Rick and the fellow who didn't ask about the gun, emphasized the fact that there are patients who will attempt suicide after hearing bad news. It also demonstrated how to make a connection with a patient even when you think you don't know how to do so, or what to say. You have to make a conscious decision to open your heart to the other person, knowing that you might get hurt by doing so. You can't be effective in oncology unless you open yourself and allow yourself to be vulnerable. You will get atached to patients and if they die, it will hurt. But your heart will heal---until the next time.

I got to tell all these doctors things that I have wanted to say to doctors for years. I hope they remember the stories and I hope they will talk to their patients about sex and about death when it is appropriate.

debraocn

Marnie---

Sounds like we have a lot in common. OCN and triple negative. Where do you live? It would be great if we could get together like the group from LI.

Debra

beebie

Thank you for your reply. You do sound very upbeat despite the grave nature of your illness and the knowledge that you have limited treatment options left. Your strength and energy to conduct research at this stage in your disease impressed me so much that I couldnt reconcile your use of the word dying to describe yourself. I certainly did not intend in anyway to hurt you, but to help you see or hear how positive you sound to others. I admire your generous spirit and interest in educating health professionals to be better at truly addressing the concerns of thier patients.

Thank you for sharing yourself and situation with all of us. And for getting all of us to share our experiences. I know that I am always wondering how it will be for me in the end. You have provided one special picture that will last in my mind. your friend, b.

debraocn

MaryKathryn:

I like your philosophy that there is a cure for each type of cancer. We just haven't found them all yet.

In the 1930's people were dying of "consumption" or tuberculosis. Once diagnosed , patients were isolated in sanitariums. Sometimes families were separated for long periods of time. My father was working in a factory, which had ideal conditions for breeding TB. He was in his early 20's and of course he got TB and was sent away to upstate NY. In some ways, it was like being in prison because you were not free to leave until a doctor certified you as being free of disease. My dad was very sick and the doctors told him that the only way he was getting out of the sanitarium was 'horizontally" or 'in a box' Nobody thought he would get well. After he was there for about a year, a young girl arrived. She was 16 and had gotten TB from her mother. When the health authorities found out, they sent her and her mother to different sanitariums and removed the 3 other children from the home and sent them to 3 different foster homes. The family was completely broken up as if they were being punished for having TB. In spite of predictions, my father began to get well and while he was recovering, he met this young girl, 8 years his junior. She was very pretty with long auburn curly hair. He wanted to get married as soon as he was well so that he could have a son to carry on the family name in case he died. He courted the young lady and she fell in love. As soon as they were released from the sanitarium they got married, with the expectation that my father would die within a year. They remained married for more than 50 years and had 4 children, 6 grandchildren, and 3 great-grandchildren. My father died of pancreatic cancer at the age of 83. Any time someone looked at a chest xray of his, they always tried to give him the "bad news" talk. He would stop them and say that he had been hearing that talk since 1938.

Cancer is the TB of today. My parents stayed alive long enough to be around when they found the drug to cure TB. They were treated like lepers because TB is contagious. While cancer is not contagious, we are still learning about the disease but are much closer to finding cures for most types of cancer. We just have to stay alive long enough to be here when they find the cure for all types of BC. I think mapping the human genome was the start of understanding the nature of the disease. So many targeted therapies are being developed here and in Europe for cancers that we always thought were incurable --lung cancer, pancreatic cancer, MBC, met colon cancer. In fact, as a nurse, I'm having a hard time keeping up with all the new drugs. There hasn't been too much for triple negative cancer, but recently the medical journals have indicated that researchers are looking at triple negative BC. One new drug that has come out is ixebepilone, a targeted agent for MBC that is triple negative.

So let's keep the faith!! The cures are coming. We need to be here when they arrive.


Thank you all for sharing your stories with me. You helped me to teach a room full of doctors to improve their communication and give better care to their patients.

marnie

Hey debraocn,
I'm in the metro Detroit area. Currently working for county as HIV nurse. It's a great fit..my cancer gives me a certain empathy for the HIV diagnosis. Not curable but treatable, med. side effects to deal with, immunosupression issues. The only plus (?) for cancer is it is not a communicable disease like HIV.

MaryKathryn

Your father's story is beautiful. Thank you for sharing it. Funny, your TB analogy is exactly the one I use to explain hope for cancer. My first oncologist expressed the situation so well, "our goal is to keep you alive long enough for the cure". After 2 years, I appreciate this very intentional message of realism and hope.

patpet7

I have always had a strong sex drive and they did not discuss the effects of medications on the libido with me. The only thing he said was, after everyone left the room, he returned to say I might experience some vaginal discharge. That was the extent of it. My partner and I have had a very active sex life and it's important to me and the intimacy is something I need. I am fearful of what changes this will bring to our relationship. Changing from lovers to....what?

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