That Drama Queen Friend

And this can apply to males as well. But we all have the drama queen friend who spends hours/days/weeks/months agonizing over their latest ailment - a bunion, or a boil, or a blister, or whatever they have.

Maybe they got new shoes that caused their feet to develop problems or they tripped and slightly skinned their knee (and ruined a pair of brand new tights). They are in agony with every step. There was so much blood. And it still hurts three days later. I am not trying to minimize real injuries or ailments but just the ones who act like they are on an episode of the "Kardashians" or "Jersey Shore" with every incident.

I know people like this. I think we all do. In comparison, those of us with chronic ailments start to wonder if we are hypochondriacs because we are constantly at the doctor's office or on the phone with them because of our latest issue.

I read this article over on RheumatoidArthritis.Net on the influence of these friends on our own thoughts about ourselves. And it made me think. I often wonder if I am getting to be such a hypochondriac because I do spend so much time at the doctors.

I do know people who are basically healthy. One woman I used to work with scheduled all her doctor appointments in one week each year to get them over with and she never went to the doctor any other time. (To be honest, I am jealous.) But I know a few drama queens who make me feel like a hypochondriac. They may go to the doctor a lot but its not for anything chronic or potentially terminal.

But I go to the doctor all the time. I think I would prefer to be a drama queen than a hypochondriac.

Finding Support Resources

In my personal experience the most important thing to do after a 'yucky' diagnosis (after going to the doctor and taking your meds) is to find support resources. I keep saying that the emotional part of you is just as important of the physical side of you and this is yet another example.

First I would ask your doctor for information and then look at the source of the information they give you. For example, at my breast cancer diagnosis I was given a folder of information with resources - including a flyer from the American Cancer Society, and one from a local support organization. Two good places to start. But I was also told about Breastcancer.org which was another great resource.

Second, I would skip Dr Google but would look for information for patients for that ailment. For example, going back to my Rheumatoid Arthritis I found rheumatology.org which is primarily for doctors but also for patients and I found arthritis.org which is more for patients. both provided me good information.

Third, I went back to that other flyer I got from a local support organization at my breast cancer diagnosis. They had support groups! One full of people like me grappling with their cancer diagnosis. What a great place for me to go.

Finally, I found komen.org which had online support groups.... The last piece I needed.

So when you are faced with that yucky diagnosis, work on finding support. Trust me its out there. You just need to find it.

Recently I was told about two young people around 20 who were facing fairly awful cancer diagnoses. They needed help. I quickly recommended a couple of resources for them - primarily Stupidcancer.org. (I love their tag line - we make cancer suck less. If you are offended by that language you are probably too old for them. They primarily work with people from age 15 to 35 or 40.)

It never ceases to amaze me that people with cancer, or something else yucky, try to struggle blindly without any emotional support. Trust me at my second cancer diagnosis, I quickly jumped on the support bandwagon and joined support groups and had a therapist. By the time I was diagnosed with RA and fibromyalgia I already was connected to many support resources.

Trust me your emotions are important....

Forming the New Plan (Part 3)

So, my new plan is forming. I have done some thinking and some research. I also talked to my therapist and she gave me a few ideas. My biggest weakness is that I cannot over-schedule, over-commit, or over-stress myself. I need to pace myself.

I have found some events to attend - a gardening as therapy event at the library and the next monthly Garden Club meeting. Of course they are only two days apart. I hope to get my husband to go to the first one with me as it is on a Sunday. He might.

Going forward I hope to join the garden club, but their year runs September - June. They only have two more meetings this spring. I am also going to keep my eyes out for more events at the library.

So if I find an event or two there each month, add the garden club meetings, that will get me out of the house more. I should actually learn some things there too.

That's my first step. I also plan to reach out to the Senior Center to see if I can do something there. My therapist suggested starting a knitting/needlework group there. They already have a knitting group that meets at the exact same time as my other knitting group at the cancer support center.

However, I am not sure I want to commit myself to another weekly obligation. Well, its not that I don't want to commit, its that I am not sure I am physically able to commit to one. (See that's the problem....)

Starting in April, gardening season will begin and I can fill my time outside. No I can't plant anything until mid-May but I can plan and prepare. I have already started my snapdragons inside.

Then I have a friend coming to visit in May. I will go to the beach to visit another friend in June for a few days. More travel over the summer.

This is a start. The plan will continue to come together.

This is me getting my mental state together again and forming a new plan.

Sometimes We Just Don't Care Anymore

Yesterday I ran into a friend and we chatted for a while. I have been dealing with my usual ups and downs health wise and some emotional crap. She has also been through a round of health stuff and emotional stuff. We caught up on the most important things going on in our lives for a few minutes and touched on some of the items we have been coping with. We both said sometimes we just don't care anymore.

Call it being overwhelmed. Call it whatever you want. But we just don't care. As a professional patient, sometimes you get so inundated that you really don't give a s**t about anything. Coping with our lives gets so complicated that we just don't care, unless there was something near term fatal, there is nothing that is that important.

I have my annual physical this week and we will talk about my back pains and maybe I should have more imaging on it. Maybe I should have a lot more imaging and testing but I really don't want it now. Unless my doctor tells me I need immediate treatment for something so I don't die, I'm happy to wait. I have so many ailments that how can I have anything more?

My friend, who also has gone through her own personal roller coaster, agreed with me. Right now, she only wants to take a couple vacations and doesn't want to think about emotional or health issues for a while. After she does some travelling, we are going to get together at the end of October for coffee to catch up. Maybe by then we both will care about things again.

Not A Good Idea

Yesterday, I decided I really wasn't feeling well and stayed home with Boots who is not feeling well either. I really wasn't feeling well. Everything ached and I was tired. Not a good day. My husband went off to work around 7 and left us both home (with the other healthy cat) for the day until 5 pm.

So I took care of myself by not exerting myself. I allowed myself to be lazy and have my body aches and pains and fatigue dictate what I did.

The sum total of what I did yesterday consists of watching 3 LMN movies, 2 episodes of Law & Order, and one episode of Property Brothers. I also set up my loom and started weaving with some beautiful chenille yarn. I also went outside to get the mail from the end of the driveway and supervise Boots when he went out for about 30 minutes. Not a lot of exertion.

Boots hung out with me. He went from room to room with me. He did insist on going out briefly (he hates litter boxes and prefers the great outdoors) but came right back in.

By the end of the day I felt a little better. I definitely had not exerted myself. But, and then comes the big 'but'.

On the downside, by staying home and not doing much, I felt totally isolated by the end of the day. I am not up to doing that regularly. I felt cut off from the world. I didn't talk on the phone to friends but had several email and text conversations. I also took care of some things I needed to do on the phone and online.

However, I could not live like that every day. I mean I physically could but would need to get more exercise. But mentally and emotionally, it would be horrible for me. I could see myself getting very depressed quite easily. And if I got deeply depressed that would have all sorts of bad ramifications that I won't even go into here. I am already being treated for 'post cancer' depression - which really should be 'my body fell apart before I was ready' depression.

I am going to call yesterday a learning experience. And one not to be repeated unless I am completely incapacitated and not expected to survive. This also reinforces to me the importance of one's emotional/mental state as compared to your physical state. They are both equally important.

Today, I am going to make sure I do get out and do things. It help that my husband is home. I think I might even go to the gym because I didn't yesterday.

Managing Emotions

This week I read two different blog posts from other women dealing with breast cancer - Nancy wrote about cancer patients being told to be positive and Florence wrote about the crappy and the happy we deal with in our lives. After reading them, I commented on both. And then started thinking (sorry!).

First of all we have the issue of cancer patients being told to be positive. Honestly, whoever came up with this was an idiot. There is something to be said for not succumbing to depression while dealing with a medical disaster. If you are depressed, you aren't going to take your meds, go to the doctor, get emotional support. But if you are trying to stay positive you will probably handle it better. However, don't tell me to be positive and smile.... Grrr....

Then we have the issue of coping with the crappy and the happy. Everyone gets a load of crappy in their life and a load of happy. But its how we handle it all. We have to learn to balance the bad with the good and look at the goals for the long haul and take enjoyment out of what we have.

Even without adding in a medical roller coaster along with everything else, it can be tough to maintain one's sanity and be able to smile once in a while. Its that medical crap that can screw everything up. All of a sudden you can't work, you have problems getting around and paying your bills. And you are supposed to smile? Don't tell me to be positive on top of all that. I will work on being able to keep a smile on without your help.

I think I just don't like being told what to do.

Resentment

Among all the other emotions for a cancer patient is resentment. First there is the resentment of why me? But the biggest problem is the resentment of others.

Why did X turn their back on me when I was diagnosed with cancer after all our years of friendship? This one is very common. I have lost more friends at the word cancer than I care to count. I hope they think they are better off without me and I certainly know I am better off without them. But it took a long time to get that way. There are numerous iterations of this passed around among cancer patients. We all have this happen to us.

But the bigger resentment comes when key family members, who we have relied on our whole lives for support, hide information about our diagnoses from us. Yes this happens.

I met a woman about five years ago. She was diagnosed with thyroid cancer when she was 18. Her parents never told her that she was diagnosed with cancer. As a result she never had any follow up treatment after cancer and experienced numerous recurrences and their treatments for decades. Her parents were scared of the word cancer and didn't want to admit it had happened to their family.

I know another woman who was diagnosed at age 20 with cancer. Her mother never told her. Her sister never told her. Her best friend never told her. Can you believe it? And her mother since passed away before she had a chance to come to grips with this. Her friends and family did not feel she was emotionally able to cope with her diagnosis.

I know someone else who's family were with her through her cancer diagnosis but never discussed it. For decades. It was sort of put to the side and was and is the elephant in the room that is never spoken of. How does that sound? How do you face your family when they do not choose to discuss your health for decades?

This kind of resentment festers and lingers. Its a huge emotional load for a cancer patient to deal with along side of life long health issues, side effects, and emotional drain.

Advice for the newly diagnosed

Yesterday I got a message from a friend about a friend of a friend of a friend who was newly diagnosed with breast cancer, that unfortunately seems like it might be stage IV.

Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.

Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.

1. Find information to help you understand your diagnosis, knowledge is power. Look for information online, in books (yes the old fashioned printed things), and from medical professionals and medical associations. Ask your doctor questions about your diagnosis and ask your doctor for resources for more information to help you understand your not-so-fun ailment.
   There can be too much information to absorb at once. But I think if you start with your disease, the stage its at, and treatment options - big picture only - you can get a better idea of what you are facing. I mean do not get wrapped up in different chemotherapy options at this point. I think if you can get an idea of what you are facing in terms your disease and not get bogged down into the details, you can get a better grasp on your options.
   Later, after you have had a chance to absorb your diagnosis and its implications you can then focus on the aspects of the different treatment options.
2. Find support to help you keep your sanity. You can find support in many places. I suggest asking your doctor's office to start but also ask any friends or family who have been faced with a similar diagnosis or are in the medical profession. They may be able to provide support but also may be able to help you find more information. Support is many things. It can be a support group - whether virtual or in person. It can be a network of friends who provide childcare, meals, and company. It can be someone to hold your hand while going through treatment or at the doctor's getting news.
3. Focus on your sanity. When faced with a not-so-great diagnosis, you can easily go down the emotional roller coaster to hell in a hand basket and back again, over and over. It is okay to say, 'I'm not going to make a decision right now, I need to think about it'. When faced with treatment options, a good answer can be a question - how soon do I need to decide?. 
4. Stand your ground. Often well-intentioned friends and family members tell you what they think you should do - because their hair dresser's dog walker's cousin's next door neighbor had a similar disease twenty years ago and this is what happened to them. Smile and tell them thank you and walk away. Others will tell you which doctor to use, or why you should go to Germany for this new treatment, or other not so helpful information. Finally, there are those who will offer condolences as if they were at your funeral 'well, you have lived a good life' or 'it must be your time'. What are they talking about? You aren't dead.
   Do not let these people near you, walk away from them. They are not helping you. They do not understand your predicament and listening to them will not help you. They will send you down that emotional roller coaster again. Focus on finding new friends who are supportive. 
5. There is no such thing as a new 'normal' so forget about finding it. Those people who tell us about the so called new normal have no idea what they are talking about. All it does is stress us patients out as we try to find it. However you can still be who you are after diagnosis. You may find you are stronger than you thought you were. You will find out who your true friends really are.

I am not a doctor or a medical professional. I am only a professional patient who has been wandering the halls of medical disasters for decades. This is my advice. You may find that your advice to the newly diagnosed is different. 

Connect the Mind with the Body

The 'all-powerful' insurance companies have been mandated by law to cover mental and behavioral issues the same as physical ones since 2008. But just because the law says so, doesn't mean this really happens. (Didn't I just blog about this? I did, yesterday. And then today's Boston Globe has an article on this very subject.)

The new way of health care payments, the global payment system, may actually lead to better care for the emotional side of treatment. The payments are made per patient and not per treatment and an emotionally healthy patient is probably better at managing their medical treatments.

"The hope is that global payments are providing incentives for insurers and providers to finally raze the longstanding wall between mental and physical health care, since reimbursements are based on patient outcomes. Potential benefits are obvious — people suffering from both diabetes and depression, for example, would be more likely to consult a doctor for diabetes treatment if their mental outlook improved. Conversely, depression might ebb in patients who keep their diabetes under control."

For anyone who went through chemo, didn't you just have some days where you were too tired and too sick and too sick of being sick to want to go through chemo and someone had to persuade you to go?

So maybe with this global payment system,which is not yet perfect and shows some gaps for some patients, will help with this. At this point, I am happy that I am not the only one who cares about the emotional side of being sick.

The Big Gap in Treatment for All

Someone said something the other day that hit a nerve for me. 'How well do you think the emotional needs of patients are met?' And I started thinking.

When I was diagnosed with thyroid cancer, my emotional needs were not mentioned. At all. When I first destroyed my knee skiing, no mention was made of the changes I faced in my life. That was when I first needed to give up some of my favorite sports - skiing was never the same again. When I had hysterectomy, I was given the advice by friends to go to hystersisters.com to answer a lot of emotional questions and the long term impact of the surgery. I do not think my doctor gave me any advice. I mean I may have been given a pamphlet but that was it.

When I was diagnosed with breast cancer, I was definitely given a folder of information on resources - support groups, lymphedema, hair loss, Look Good, Feel Better programs. But I was the one who said I am going to a support group, asked for a therapist, and all that. My emotional needs were sometimes asked about but I felt I was the one raising the issue of how I was coping.

When I was diagnosed with fibromyalgia and rheumatoid arthritis, my emotional needs were not mentioned. these diagnoses are not minor, they are pretty much life changing. And doctors didn't think my emotions were an issue.

No matter what the doctor tells you, how often do they stop and ask you how you are doing emotionally? Somethings are minor - you get the flu, sprain your wrist, etc - you will heal and go back to normal. But after a diagnosis of RA, MS, fibromyalgia, heart attack, stroke, or anything else with a significant long term impact on your health that will change you forever, shouldn't the doctor and the rest of your medical team consider your emotional health as much as your physical health?

More on cancer costs

A few days ago, I blogged about the costs of cancer. But there are lots more costs of cancer that are not just financial.

There are physical costs that include surgical scars, damage to your body from treatments, and more.
The emotional costs are things like PTSD which takes a lot to get through. Neither of these can ever really go away. You just end up covered in scars inside and out.

So well-intentioned people do things like give free trips and events for those who were diagnosed with cancer. These are the people who offer trips to us cancer people.

If you have been diagnosed with cancer, you can go to events like the Stowe Weekend of Hope for free the first year. Then you get an incredibly discounted rate for future years. Don't get me wrong, the Stowe Weekend of Hope is a wonderful event with so many resources for those with cancer. But I just wish I didn't have the medical history which allows me to go so cheaply.

So as we dig deep in our financial pockets we also have to cope with all the other costs and you can't just declare bankruptcy and walk away from your emotional and physical costs.

The Costs of Cancer

So you get diagnosed with cancer and all of a sudden you put your entire life on hold and you grapple with side effects, hair loss, constant aches and pains, surgical recovery, and giant medical bills. You rob Peter to pay Paul so to speak every month as you juggle your bills. You take time off work to cope with treatment and your income tanks and money is even tighter. You try to save for retirement as you wonder if you will be there for retirement.

But picture this if you were in college or just out and didn't really have a job. You are dependent on your parents for money. You alternate between your dorm room, your parent's sofa, and the infusion room. You try to figure out how you are ever going to have a career, if you are going to have a career. You hope you do not have to declare bankruptcy before 30 just to stay solvent because you have student loans and medical bills. At the same time you wonder if you will be around to turn 30.

I have been in both situations. At 19, I was diagnosed with thyroid cancer, but was still on my parent's health insurance and it took a summer to deal with the bulk of treatment, but have had follow up's every year or more often since. Medical bills and student loans were not as sky high back then but I did go through a lot of angst as a result of my diagnosis.

Then at 45 I was diagnosed with breast cancer and wondered how to pay bills as I job hunted through treatment. I haven't worked full time since. Money is much tighter now. Saving for retirement has been less important. With two cancer diagnoses, retirement looks a bit iffy at times.

At some point I learned about a wonderful organization called The Samfund. This group helps those young adult cancer patients figure out their financials and provides some grants. How do they know how to do this? The founder has been through this herself. I just wish they were around for me decades ago.

Being told you are cancer free only makes you find out about all the costs you still have to pay - financial, emotional, and physical.

A Cancer Diagnosis is More Important

Today's Ask Amy column upset me and made me think. You can read it below or here as published in the Boston Globe.

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Q. My sister (in her early 40s) was diagnosed with cancer. They caught it early, so it’s still at an early stage. We in the family all found out about this a few weeks ago.

I have messaged her and her husband a few times since then to chitchat, but never asked them about the cancer.
I feel like if they want to talk about it or need my help, I will be there. It is understood by everyone in my family that we will help each other if asked.
My sister and I haven’t spoken for a week, and I found out from my other sister that my brother-in-law called me rude and not supportive because I didn’t offer to help.
I have two young children, and the younger one was constantly sick. I also work full time and am dealing with a dying father-in-law.
I don’t have the memory capacity or time to follow up on them all the time. Was I being rude? Hurt

A. You were being rude, and you ARE being rude.

Even if yours is a family that considers illness to be a private matter — your sister has cancer. It is incomprehensible that you would learn of this, initiate contact with your sister to “chitchat,” and then never mention it.
Your sister and her husband also did not bring it up, but they knew you had an awareness of their situation and were no doubt expecting you to at least inquire.
You say you can’t be supportive because your sister’s cancer is trumped by other family issues. This is even more baffling, because if you have experience dealing with illness, surely you realize that the comfort doesn’t come from offers of “help,” but from having people at least acknowledge the challenging situation illness presents.
In the course of your messaging, what does it cost you to type: “Oh, Sis, I heard about your cancer. Thank goodness it was caught early. I’m thinking of you. . .”?
All of your reasons for not doing this come off as justifications after the fact. You should apologize and offer some sisterly support.

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I agree with Amy here. If someone is diagnosed with cancer, it should be recognized by family members. I have had too many people run for the hills at the word cancer. I never wanted to be buried in phone calls about my medical issues but it is nice if family members recognize it.

Obviously the letter writer is a bit self centered and she has a bit too much going on in her life to think of anyone else. But seriously? Your sister had cancer and you blew it off.

A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.

Palliative care

Palliative care is not hospice care. It can be part of hospice care but in itself is separate. Now there is some research that palliative care should start at the point of an advanced stage cancer diagnosis and not later. The study focused on both the patient and the caregivers. Both of who handled everything better with it. Palliative care is pain and symptom relief - isn't that really important?

Personally I think palliative care should be part of any major medical diagnosis. I have been through too many medical issues not to appreciate the importance of it. I sometimes my consider my pain management doctor one of the most important people in my medical team. See Hollye's diagnosis story here where she talks about this more.

"Palliative care, a team-based approach in which a group of professionals – including doctors, nurses, social workers, psychiatrists, dieticians, and chaplains – focus on relieving the pain, anxiety, and stress that cancer can cause, can help control pain and improve quality of life in many situations."

At my breast cancer diagnosis, a social worker was involved in the initial team and was part of my care all during active treatment and somewhat afterwards. As I grew stronger, I was able to find support elsewhere that was more convenient and didn't require  yet another drive to the (damn) hospital.

"...your plan might include ways to manage pain, fatigue, loss of appetite, nausea, and insomnia. Your team also can provide help and resources for dealing with emotional, practical, and spiritual concerns."

Pain management is essential in well being. If you are in any kind of pain, whether post surgical or other causes, keeping it under control offers the patient an important respite - the ability to rest, eat, and move more easily.

While I might not need more palliative care right now, I will be sure to find it when I do.

Emotional Support when Facing A Cancer or Other Nasty Diagnosis

Repeat after me:

"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"
"You are not the only one with this diagnosis"

And again.

You could have a rare disease, such as being one of only 8 people world wide with the same diagnosis. But I bet there are other people with a similar disease from a non-medical type of view. You are not the only person with a cancer or a genetic disease or whatever you have. Unfortunately there are other people out there who are dealing with their medical diagnosis.

At my second cancer diagnosis, I didn't sit back. I took action. Within 24 hours of my diagnosis, I started my blog to keep people posted on my health. Before my first surgery, I joined a support group. Somewhere in there I started tweeting and joining several online communities for additional support. At the end of active treatment, when many people fall apart because your medical team says 'see you in six months', I found a therapist. I was determined not to let cancer suck away years of my life again.

I cannot say enough about the benefits of support groups. When I joined, I was told that it was proven about the benefits of them. People who actively seek out emotional support do better with their treatment. They have been shown to  handle treatment better and have improved outcomes. Check out all these articles referenced here to show studies demonstrating this.

If you are emotionally miserable with your medical issues, find support. These days it can be available in online communities but also in person. I recommend you make the effort to get to an in person group at least  periodically and make new friends with those who are there. You will feel better.

I have numerous cancer friends. These are friends who I would not have met if I didn't have cancer. We help each other with the bumps in the road. You can do this too.

Yes every cancer diagnosis is different even if you basically have the same disease. But the medical roller coaster is pretty much the same for all.

Ignore all the headlines

I think I spend too much time reading the headlines, especially in the category of health news. If I believed them:

• I will get the flu because it is rampant across the country
• The cure for many things can be found in some obscure arctic bacteria
• Booze is so bad for you, you could poison yourself easily.
• Pain killers are now the street drug of choice.
• Our phones are suffocating us.
• Cancer is due to back luck.
• The cure for some obscure form of cancer will be found shortly.

I am so done with all that. I am going to be healthier this year and am promising myself, I will stop  bouncing through the news headlines. We know Dr. Google doesn't know anything. So we should also assume that Dr Internet knows nothing.

Emotionally, grabbing at headlines can be very stressful. The yo-yo effect of the constant ups and downs are significant. Its sort of like scanxiety at a lesser level. I need to take more control of more levels of my life, as I have blogged about before, and this is just another one.

With bad medical diagnoses, we tend to grab at straws looking for the magic cure. Then we develop the bad habit of following anything we can find - usually ending at disappointment - and keep repeating the process because it offered us a small glimmer of hope however fleeting.

So I am going to stop reading the over-hyped headlines that offer false hope and start looking for real information. I can't live on false hopes and the ensuing roller coaster.

Its a life, not a fight

Cancer is not a battle, or a war, or anything more than someone's life. Finally there is some research backing me up. New research says that calling cancer a fight can be negative for the patient. Yes, negative.

War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.

President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.

So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.

All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.

I know exactly where I was

I know exactly where I was when I was told I had cancer each time. The first time I was lying in the post op area of the hospital and the surgeon came in to tell me the news. The second time, nearly 26 years later, I was sitting on our bed holding my husband's hand when the surgeon called.

It doesn't matter how many years apart it was. The effect is still the same. The words 'you have cancer' are just as, not scary, not terrifying, maybe intimidating is the best word. I think I was more intimidated than terrified. Its a big scary diagnosis.

The first time I was completely caught off guard. I was 19. No one had ever muttered the word cancer to me before surgery. Goiter was the word I heard. The second time I was a bit more aware. There had been some mutterings about not looking very good, etc. But I was still in denial after the diagnosis.

Those moments never leave you.

A life changing experience

I am not writing this as a fundraising plea but to tell about a life changing experience. We all may need these sometimes.

There are breast cancer retreats, support groups, pink groups, pink girls, and I can go on and on and on. But occasionally one comes along which is a life changing experience for the participants. A good example of that is Casting for Recovery. It teaches women with breast cancer a new skill, provides psychosocial and medical support, and after a three day all expense paid weekend, have a life changing experience. Read this story about a woman in Oregon and her experience on the retreat. 

When I first heard about Casting for Recovery, I thought how cool is that. I'll have to sign up and I did. Then when I was driving to the retreat stuck in Cape traffic on an August Friday afternoon, I thought to myself: 'What am I doing? Going away for the weekend with a bunch of strangers. How did I get myself into this one?' And I came up with a plan. I was going to have gall bladder surgery a month later. I decided if it was awful, I could always fake a gall bladder attack and leave.

By the end of the weekend, I had new friends, reached a new level of acceptance with my medical history, and relearned some childhood fly fishing skills. It was a life changing experience for me.