Giving Back

Or helping yourself while you help others. After going through cancer, or other nasty medical misadventure, you are traumatized, and, as in the words of Arlo Guthrie:

"...you get injected, inspected, detected, infected, ..."

You do not have fun for many months as you watch your hair fall out, your blood counts go up and down. You also follow your tumor markers more than the stock market, try to figure out how to get rid of your 'chemo pallor', and lighten up any surgical scars. At the end you feel like you have been dragged through a swamp, up a mountain, and under the proverbial bus. 

You spend a lot of time trying to find the rumored "new normal" and crawl around dealing with PTSD. At the end, you are you again but not the same. There is a lot of coping involved and it doesn't end overnight.

Since my second cancer diagnosis I have spent more time trying to cope than I have ever done anything else in my life. One thing that has been very helpful for me, because of all the cancer crap I have had to deal with in my life, has been to give back and help other people who are coping with cancer - or just plain 'giving back'. 

In the past three weeks or so I have been connected with three people who are coping with cancer. They are completely disconnected from each other. But I am trying to help them cope. 

How can I help them? I am not a doctor. I am not a medical person at all and do not claim to have any medical or psych/social training. But I do have experiences to share. Most medical personnel have not been through cancer so they cant talk about it from my side of the street.

I can talk to them and help (I hope) them cope with what they are going through. I can help them find resources to give them more information (instead of listening to Dr Google or reading wikipedia). I am also living proof that someone can live through cancer twice. 

What does all that give me? It gives me the opportunity to stay connected with the cancer community. I can never ignore the fact I had cancer twice and those thoughts never leave my head. By helping others, I get a sense of satisfaction that I am doing something good, something that helps someone else. 

In addition, I am not trying to hide my real feelings about cancer by burying it some place where I don't talk about. I can't hide my cancer feelings so it does me a world of good to use them to help other people.

So if you have cancer, go find help if you need it, or if you can, go help someone else who would benefit. Do some good by giving back.

Supporting Your Friends Through Your Cancer

Say what? You know that line 'don't my your problems, my problems'? This is clearly the case here. Yes, sometimes your friends want emotional support because of your illness.

One of my closest friends mostly vanished from my life during my treatment. Yes she has a very busy schedule and she had a small child at that time. Her mother was also very ill. But I missed her emotional support during that time.

Currently and in the past, we would talk at least once a week and get together once a month. But during that treatment time period, I didn't talk to her for months. I had other friends but I missed her. Later one of our mutual friends told me she had a very hard time dealing with my diagnosis. So maybe it was better we did not talk as often.

I am not blaming her at all. I had enough going on dealing with my diagnosis and treatment that I couldn't have coped with anything else. Today's 'Ask Amy' column rang a bell for me:

"Dear Amy: I’ve recently been diagnosed with breast cancer and have focused my emotional bandwidth on my family, my health and curing my cancer. I have a huge support system that includes family and friends. One of my close friends is having trouble coming to terms with my diagnosis, as well as my not taking her up on her offers of help (yet).

"This friend called a few nights ago sobbing and looking to me to help her feel better about my diagnosis and my long-term prospects. My diagnosis isn’t as good as it could be, but it’s also not as bad as it could be. I did my best to help her understand, and then changed the subject.

I’d really rather not be calming down my friends when inside I’m losing my mind with the slow pace of health care and juggling my appointments and treatments.

Is there a gentle and polite way to explain the “grief circles” to her that’s nonconfrontational? I could really use some help, as I have months and months of work concentrating on my health ahead. I’d like to kindly and gently explain to my friend that I cannot be the person making her feel better about my illness.

Your suggestions?  —Not Dead in California

"Dear Not Dead: “Grief circles,” otherwise known as “ring theory” conceptualizes the important idea that, when dealing with tough or tragic times, it is important for the person at the center of the circle (that’s you) to preserve her strength by only dealing with the person most intimately involved in her care — this might be a spouse, family member, or friend. Other relationships arrange outward in concentric rings. This is called the “kvetching order.” 

The person at the center of the ring (you) can say anything (complain, cry, howl at the moon) to those in outer rings, but those in outer rings should limit their own needs, fears, and statements and focus only on being helpful. No unsolicited advice, no raging at the injustice of it all, no demands for comfort or constant updates. 

Honestly, this seems so logical that it should not need to be spelled out, but understand that ring theory is mainly for you — to give you permission to react the way you want to during a time when you need to preserve your strength (and “emotional bandwidth”). In short, you are not supposed to be worrying about how to be gentle and polite, comforting your friend through your crisis.

You could say, “I understand that this is hard for you, but I can’t help you through this. I’ve got too much on my plate. I hope you understand.” Encourage her to contact someone else in an outer ring when she is upset."

I can honestly understand that some people fall apart when people they care about get a nasty medical diagnosis. I think that is what happened with my friend. Our diminished communication was her way of coping. We are now closer friends than ever.

Cancer Friends

For the past two days I have spent time with different cancer friends. I call them cancer friends because I met them all through cancer situations - one group from my old support group and two others I met at different cancer retreats.

What was the gist of all our conversations? Our health and our numbers of ailments. We all have ailments we are coping with. Some of us have new or potential ailments which bring us concern. Some of the ailments are side effects of our cancer treatments. We do not all have cancer concerns right now but that always lurk in the background. And we all know it will never go away.

We shared test results, doctor opinions, traded doctor referrals, and shared our concerns. We tell our medical concerns that we may not have yet shared elsewhere. Our ailments are not all cancer related  We got bolstered through our conversations. They were like mini support groups.

This is the benefit from cancer friends. Cancer is not something to do alone. You need cancer friends to get through it. Then they become life long friends.

I'm having lunch with another cancer friend next week to look forward to. More emotional support for both of us.

Thursdays Are My Favorite

This morning I realized something. Thursdays are my favorite day. Why? Because I have my knitting group.

I really like my knitting group. When we moved a year and a half ago, I wanted to continue to do something cancer support related. Not necessarily something to provide me with support for my cancer crap. But more for something to connect me to the cancer community and other cancer people.

We didn't really move that far. Probably only 10 miles as the crow flies. But in little New England towns, that can be far, far away. The town where we lived is much larger geographically than our old town but has fewer people. To get to where we used to live, we have to go to three other towns. So culturally it's another place. My father tells me we no longer have Boston weather but New Hampshire weather.

Anyway, I had to find a new place to connect to the cancer community so I approached a cancer support center closer to our new house now than before we moved. We agreed I would start a knitting group in the spring.

It's been doing pretty well, with ups and downs in terms of members. We have a core group that comes regularly. We are fairly flexible in terms of who we like to join us. The main requirement do some sort of craft that can be brought to the group - we have cross stitchers as well as knitters and crocheters and have a beader coming to join us. And probably our best knitter is a gentleman who knits items for his children and grandchildren.

The only other requirement is that everyone has to have had cancer. We initially were pretty open on who could join us. But after a few uncomfortable sessions with people who just didn't 'get it', we decided that we really only wanted to have people who 'got it' because they had had cancer too.

As a result we have a group which communicates on many levels about cancer. Our topics can be wide ranging. But its always a wonderful conversation. It seems we have connected in different ways and our crafts help bridge our differences. Some participants have said its better than their other support groups.

I look forward to every Thursday afternoon where for two hours I connect with people who understand my life in a different way than many other people.

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....

Balancing Cancer Recurrence Fears

So I have been blogging about cancer recurrences and then I find a study that talks about how to cope with cancer recurrence fears. Basically what it comes down to is counselling, support and knowledge.

A study was done in Holland and followed several cancer patients and provided information and support on their cancer and recurrence issues. They compared two groups, one who received access to normal psychosocial support. The other group received blended cognitive therapy consisting of:

• five individual, 1-hour, face-to-face counseling sessions
• three 15-minute Internet chat consultations
• access to an informational website

It doesn't sound like a lot of support but after three months:

"Overall, about 33% of people who received blended cognitive behavior therapy had their fear of recurrence ease significantly, while none of the people who received usual care had their fear ease significantly."

So if you are concerned about recurrence don't hide in your house, go out and get some support. I think support doesn't always need to come from professionals. Sometimes just talking to others with your type of cancer is very supportive in itself. If you are very concerned you need to get some professional counseling.

All this goes back to my point that your emotional well being is just as important as your physical one. 

Biting My Tongue (Or Letting Others Learn By Themselves)

At one's first cancer diagnosis, you are welcomed shoved into Cancerland, where no one wants to be. You learn about your cancer and probably a fair bit about cancer in general. Eventually you go on to learn more about cancer than you ever cared to know.

You get to the point where you can talk about cancer and its treatment and have a general idea of cancer treatment hell. You also understand staging and what different stages mean. You never wanted to know all this but you do and you can't deny it.

Then someone else you know is diagnosed with cancer. Do you tell them everything you know about cancer? Or, do you bite your tongue and let them learn at their own pace?

I feel strongly about biting my tongue and keeping quiet on this. If someone asks questions, I'll help them with answers but I know I am not a doctor (just a professional patient) so I can't really give advice anyway, except to say 'step away from Dr. Google'.

Part of the trauma of a cancer diagnosis is the giant pile of decisions you need to make. You have to learn a lot of information so you can make informed decisions. I learned that I needed to learn in chunks. When I was facing surgery, what were the surgical options? Then when chemo came along, a new set of decisions. And so forth. I couldn't face any more information at one time.

Also, every cancer is different and everyone's cancer is different even if the diagnosis is the same. I can't make assumptions about someone else's cancer. Nor can I force my knowledge on them. They need to start with their doctor, their prognosis, and their decisions.

The same goes for caregivers. They need to learn as they go along. If they are providing care, ie being a caregiver, they need to get on that bus to Cancerland with the patient and help them as much as they can. If they aren't helping the patient, they are not a caregiver and can go back to whatever they were doing.

A trip to Cancerland should be viewed as a journey of 10 million steps (put that in your pedometer and you are done for the decade) which comes with its own dictionary and encyclopedia and staff of 10,000 providers that you have to decipher. You need a caregiver to hold you hand as you go along and help with all the research and emotional support - even if it comes down to bringing a barf bag after chemo. You can learn together. But call me with any questions and I'll try to help.

Finding People Like You

What is the point of a support group? Finding people like you to talk about your issues - whether its widows, cancer people, parents of autistic children. Sometimes it helps to talk to people with similar issues - everyone has cancer for example. But sometimes you need to find people with the same cancer as you.Its pretty easy to find women with breast cancer because there are support groups for them everywhere. Its other types of cancer that can be hard to find.

But then there comes the question: How do you find people like you? There aren't little registries for people with a specific kind of cancer to sign up. So how do you find them? Asking other people who you meet.

I don't mean go up to strangers and ask them if they have a type of cancer. I do mean ask your oncologist about support activities such as support groups where you might meet other people with your type of cancer. Another place you might look for similar people are on social media - just like
networking for a job.

It is so important to find people who are coping with the same issue as you. They are the only one who really understand your questions, who have been faced with the same issues have you,

As I strongly believe that your emotional side is as important as the physical side, finding support is crucial.

Peer Support

When first diagnosed with breast cancer, I started going to support groups. And I was very appreciative of what I learned from the other women in them. I also found support in online communities which helped me even more. You go to your support group weekly but the online groups were available 24/7.

I can't tell you how much I learned at my support groups that helped me understand my treatment protocol, what to ask my doctor, and more. The peer support was very different from what I learned from my doctor. In some ways it was less invasive but more personal than my oncologist and his team.

Now a hospital is using a peer support group to help promote communication across different groups and to help reduce differences in rates of screening and survival, particularly in Latina/Hispanic women as this hospital is in New Mexico.

I think this is one of those 'doh' moments that someone should have thought of sooner. There are many other peer support networks out there. But to have one at a hospital to help improve the physical and emotional health of those with breast cancer, is amazing.

I hope many other hospitals try this type of activity for those with breast cancer or other ailments where there are disparities.

Finally Back Home

I have spent most of the past two weeks travelling. First it was a needed break with my husband. Then it was a road trip to meet some people who were very important to me but I had never met. I am also now getting over a cold. My husband shared his cold with me last week and I have had it since. To be fair he has been sick for a week as well.

While it may not have been the best idea to over do things for several days in the row, emotionally I needed it.

Anyway, now I am back home and relaxing instead of getting up to go somewhere. I am way behind on rest and sleep. My fatigue level is too high. Basically I need to nap for the next few days to catch up.

However do I regret all my travelling? Certainly not. It was a welcome break from reality. Everyone needs to break up their regular life and do something different. Especially people who are not healthy and feel stuck in a rut because of their health limitations.

Now I do feel refreshed and ready to get back to my regular life (and finally put away my suitcase). And get back to doctor appointments.

I am ready to catch up on so many things - my blog, my doctor appointments, and more.

Social Media Helps Breast Cancer Patients

Here's a surprise for us! Social media helps breast cancer patients.... And it took a research study to tell them that. How many of us went online for support after breast cancer to the online groups at Komen, Breastcancer.org, or many other sites in the last decade? I know I did. I also started blogging and looking for offline support services.

We've know about this for a while now. But it took a bunch of scientists a while to figure this out.

"Women who communicated online the most felt the most positive about their choices about treatment. They also said their decisions were more deliberate, and they were more satisfied with them, according to the study."

And can I add the decisions we made by asking our peers who had been through the same thing were a lot more educated than those of us who went along with what our doctors told us to do because we could hear it from our peers.

"But the findings don't prove that using social media outlets like Facebook and Twitter will benefit all breast cancer patients, and the researchers expressed a note of caution."

However the scientists still have doubts because they need more research. Me, I can tell you that I was happy when I learned to ask questions of my peers. 

""For some women, social media may be a helpful resource. But there are still questions to answer before we can rely on it as a routine part of patient care,...""

Okay the internet has changed many things including the practice of medicine and the behavior of patients. Why should this be a surprise? We go online to post pictures of our cats and to ask questions about the decisions facing us as part of our cancer treatments.

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

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.

Support Group Please!

I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.

I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.

I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.

Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.

I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.

There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.

And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.

Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.

I'll keep trying. But I need to get through moving first.

The blind leading the sighted

I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.

I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.

They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.

This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.

In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?

In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.

How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?

The 'joys' and solitude of a second cancer

When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.

Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.

When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.

However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.

With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.

This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:

"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.

Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."

So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.

Always admire the man in the pink tutu

This German gentleman showed support for his wife during breast cancer and is now raising awareness and funds for the Carey Project. He only wears a pink tutu and takes pictures in surprising locations.

You can read more about the Tutu Project here.

And admire some pictures of him in a slide show showing up in unexpected places. They are also selling the prints to raise funds.

Imagine this. His wife gets breast cancer, he shows support and travels the world in his pink tutu, and they end up turning it in to a fund raising program which provides financial support for women with breast cancer, after treatment, and for their family members.  We should all be so generous.

There can be humor in cancer

Cancer isn't supposed to be funny. But to patients it can be. People in cancer treatment are still people. They keep their sense of humor. Here's some proof.

A 12 year old boy from Milton, MA self published a joke book while in chemotherapy. He got other children in the pediatric cancer center to leave jokes for him each day. He compiled them and published a book. You can buy a copy online here.

All proceeds from the book sale go to pediatric cancer research. For $8.95 you can get a few snickers and laughs and help a worthy cause. If you don't like jokes for kids, buy a copy and donate it to your local hospital.

The other half of having cancer

I have touched upon this before but the other half of having cancer, or any ailment, is the impact on the patient's partner or spouse. Somehow that gets skipped. The spouse sometimes becomes the silent partner without support in a cancer journey.

I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.

Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.

My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)

I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.

Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.

When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.

But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.

I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.

Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.

Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.

The big pink wall

Whoop-de-doo, Ford Motors just announced its Warriors in Pink 2013 program. Now you must get excited. You can buy pink appaarel from their program and a portion of the sale of each garment, $5-$20, goes to one of four charities and you get to choose which. Komen, Young Survivors Coalition. Dr Susan Love Research Foundation or the Pink Fund. Isn't this just so great. You get to buy pink gear, I must need some more! I'll check my closet and get on line now.

This is just like Pinktober again isn't it? While I admire the Ford Motor company for thinking right, they could have done it without the pink.

A recent study points out that metastatic breast cancer patients often feel disenfranchised with the pretty pink ribbon ideology. The pink mentality is positive and shows all these happy women, dressed from head to toe in pink, saying pink, pink, pink. They form little clans for each woman with breast cancer and applaud each year out from treatment or each anniversary of their passing.

I think when breast cancer is happy - they are in treatment, they are so brave when they shaved their head, their surgery went well - its all pink and pretty.

But when the diagnosis and prognosis are not so good, the big pink wall goes up to protect the pink dressed supporters from the bad news. Its not as pretty picture any more. The pink people don't want to hang out with someone who isn't rah rah breast cancer any more. They want to move on to someone who is happy and smiling.

The study did also say that 45% of the metastatic patients developed their own circle to share information to help others. But still the metastatic patient loses the original support they had when they need it most. Support does not have to be pink but just needs to be.