Celebrate the Holiday, Without the Cancer Advice

Over on Cure Magazine, Martha Carlson, who is living with metastatic breast cancer, provides a bit of advice on how to enjoy the holiday, even when confronted by the unwanted offers of 'advice' from the 'helpful' friends and family you see at family gatherings. 

Everyone knows this type of people. They think they know more than you do about how to treat your disease, because:

• They read something about it once
• They saw something about it on TV or online
• They are smarter than you and just know these things that your poor brain cells could never have found on your own
• They know someone who had a similar ailment a long time ago and their treatment must be better.
• They are positive alternative medicine will cure you instantly and you should not waste your time on traditional medicine.

After living with metastatic breast cancer for three years, she has this advice:

"Listen first.  I try to remind myself that she believes what she’s saying, thinks it’s something I’ve never heard before, wants to save my life, and, most importantly, doesn’t know any better. I listen first, at least to a few sentences.

Don’t apologize. I do my best to not say “I’m sorry, but…” If I must be blunt, I simply say that I'm following the advice of medical professionals I trust.

Lead with a fact. I’ve got several at my disposal, and which one I use depends on the conversation. 

Follow with a fact. The other common view I hear is about the value of alternative treatments, both to avoid cancer and to treat it. For breast cancer, people who chose alternative treatments were more than five times as likely to die within five years than those who chose conventional treatment.” If that doesn’t give someone pause, nothing will.

Give a little. I will often talk about my own experience with things like meditation, qi gong, exercise and healthy eating to remind the other person that we don't have to argue in stark opposition.

Be kind, not silent. Say something like, “It’s hard to confront illnesses that could end our lives. I try to be both optimistic and realistic with this disease.”

Change the subject. I try to preemptively control the conversation by asking for specifics about his kids, his retirement, his house—anything other than his health or my own.

Hold up a mirror. As is true in dating, most people would rather talk about themselves."

There is a lot more over at Cure Magazine to read. But I think you get the point. I am about to sit down with a large meal for 14 people and will cross my fingers that I don't get stuck on the topic of my health. I don't allow politics at the dinner table because I would rather talk to people about how they are doing than the latest presidential tweet. Maybe I'll just take another bite of food so I can't reply with my mouth full.

Happy Thanksgiving all!

What To Do When A Family Member Has Cancer

Its different when a friend has cancer than when its a family member. When you live in the same house as someone with cancer, you need to be a bit more proactive and protective than when its not someone in the same house.

For the person with cancer, they are probably feeling a bit stressed, to say the least. They may isolate themselves or they may act in an uncharacteristic manner - drinking more, eating more or less, etc. Their whole being is probably focused on their diagnosis and how they feel, which may or may not be very well. They are contemplating their odds, their upcoming treatment, etc.

This is not a time to make undue stress on them. They need their time to regain some emotional equilibrium. They do not need reminders to take their medications, eat food, or interact with people. You can ask once but do not nag or stress them. They are not in a good place.

The most important things that they need right now is support. They may need trips to the doctor. They may want help finding more research on their health.

They do not need aggravation. Trust me. I've been there.

Family relations can be complicated. This is not a time to complicate them further. This is a time to uncomplicate them so quit all the drama.

Age makes a huge difference

At both my cancer diagnosis, I was told 'you are definitely too young to have this type of cancer'. Gee thanks. Was that supposed to make me feel better? Because it didn't.

At my second diagnosis, I joined a support group for newly diagnosed patients which included a 28 year old. Then there was me and then everyone else was a decade or two older. I could relate to the 28 year old's concerns more than some of the older women. We still remain tight as a group but the youngest of us, now nearly 35, is thinking about starting a family, if at all still possible. She has a completely different goal than the rest of us.

I know a 22 year old going through treatment for liver cancer and she had surgical drains that were big and nasty for weeks and couldn't wear the fun clothes she wanted. She wants to have fun with her friends and stop going to the hospital. I can sympathize. Its summer and time to have fun, not wear baggy clothes to hide drains.

When I was 19 and dealing with thyroid cancer, I didn't want to stay home as my friends went out. I also didn't want to have to explain the scar across my neck to everyone - the scar that hadn't been there at the end of my freshman year but was newly done and bright red across my neck. Turtle necks in the summer time were not and never will be a fashion statement.

Don't call young people with cancer superficial if we thought of fashion first and then going out with our friends. We were just trying to be ourselves and deal with what is important in our lives. Dating is way more important to a 20 year old than it is to most 50 year olds. Scars and drains put a damper on going to the beach and baring almost all. The idea of getting naked with someone which showing all your surgical scars can make you think twice or three times.. That can put another damper on your dating life.

I have always been a fan of Stupidcancer.org (and wish it had been around decades before). I read this article yesterday about how it got started and the support groups for young adults which have been meeting in CT for the past six years. It illustrates the different needs between young and older adults with cancer. If you are under 40 and dealing with cancer, get to one of Stupid Cancer's events and meet people who can relate.

Dating and cancer

There is nothing like a cancer diagnosis to kill off your dating life. I am happily married and have been for more than 7 years. Before that I was in the dating world for my entire 20s and 30s. I had thyroid cancer in 1981 and met my husband in 2002 so that in the intervening twenty years I was out in the dating world a fair amount. I did have one long term relationship, 7+ years, but I did have many romantic and not so romantic evenings. (I think if you have had cancer, you should be able to get a pass on all bad dates, especially bad blind dates!)

I was reading this article about "Dating with Cancer" and I started thinking. (I apologize in advance for allowing myself to think but sometimes I even have deep thoughts!) I had cancer and was treated over a summer and returned to college for my sophomore year. I think it was fairly common knowledge on the small campus (1000 students) that I had cancer over the summer.

I quickly learned not to start conversations on 'what I did on my summer vacation' with 'I had cancer' but sometimes my friends and I would talk about it. In terms of dating and intimacy,  and when to talk about cancer, I think the right time to bring it up is when you feel comfortable with it. There is no right or wrong time to bring it up - once you are past the first few dates.

If you show up on  your first date and they ask you to tell a few things about yourself and you start with 'I just finished chemotherapy for my 'fill in the blank' cancer, and go back to my oncologist next week to see what my latest PET scan said', you shoudln't be surprised if suddenly they develop a stomach virus and have to go home.

If you and your partner have a great and open relationship and can talk about everything, you may feel comfortable bringing it up casually.

If you are a badge wearing, card carrying member of the cancer club, and make it your life motto, you may find you need to find a badge wearer to be comfortable at your side.

If you consider your cancer to be part of  you that takes you to the doctor more frequently than your friends, you are probably more relaxed about it and less stressed.

A few things I did learn over the years:

• Never lie about your health to a partner. If you do not feel comfortable enough with them to tell them about your health honestly, they are not probably a good partner for you. Honesty is important in a relationship. And a surgical scar will always look like a surgical scar unless you put a tattoo over it to hide it.
• There is no line in the sand which says you must tell someone your medical history before sex. You do need to talk about STDS and birth control and all that stuff but you don't need to tell them about chemotherapy and recurrence rates.
• You really should have a full disclosure on your health before marriage as it would be unfair to your partner not to tell them the truth.

If you feel up to dating during treatment, more power to you. You may also find that as you progress through treatment and then get to the new 'post-treatment' you that you change and your relationship may not adapt to the new you. That is normal.

I will sum up my advice on dating and cancer with 'go with your gut'. If you meet a great new potential partner and start talking as much as you can, spending every second you can together. As your conversations unfold and get more and more personal, you start to reveal more about yourself.

When to bring it up? Maybe take a moment, pour a cup of coffee and sit down and say you have something important you want to tell them. Make it clear you aren't going to drop dead anytime soon and be factual and keep it light. Your partner may have questions then or wait to ask questions until later. If you keep it an open topic that can be discussed again in the future.

If your potential partner runs for the hills at the news you aren't in perfect health, its probably just as well you found out sooner.

Getting rid of toxins

This has been a newer fad or rage or whatever you want to call it - getting rid of toxins in our lives and living happier and healthier. We now know to skip the aerosol containers, teflon isn't good for us, and nuclear waste is dangerous for a long time. There are the people who do a 'cleanse' where they eat healthy and drink weird things to purge their digestive system of toxins. (I'm not a fan of that one.)

The latest media hype is the toxic relationship - get rid of the people or relationships which are unhealthy for you. I can understand this. Do you have a 'user'/toxic friend? You know what I mean - the one who takes and never gives? Or the one who always talks about themselves and never wants to hear what is going on in your life? Or the one who constantly makes everyone wait on them? Or the one who never can get together - they say they want to get together and constantly cancel? Or the one who criticizes you and your choices continuously? Or the ones that are deceitful or untruthful? Some times it is the boss who motivates their employees through public humiliation. Or the co-workers who throw you 'under the bus' constantly or present your ideas as theirs? I can go on and on. These relationships can also occur between siblings, family members and spouses as well as friends and colleagues.

Toxic relationships are ones which hinder your happiness and cause stress and other problems. It is not a good relationship if they never do their share to help support it. A relationship is a two way street and both sides need to contribute. A relationship doesn't require daily contact to be a good one but it requires a level and quality of communication with which both sides are comfortable. Sometimes we need to take a step back and regroup and focus on getting rid of toxins in our lives. This may include cleaning out your kitchen cabinets or refrigerator, quitting a job, and ending other relationships.

I may have changed in the past few years and my feelings on this may have changed as a result. Through cancer treatment and then ensuing periods of recovery from gall bladder surgery and restrictions in my life due to my back issues, I no longer feel it is important or required that I waste time on toxic relationships or situations. I require a certain level of quality in the things I do in the more limited time that I have. I weigh opportunities to socialize and interact based on the physical and emotional effort required to participate. I can't just run off for a day of shopping with a friend as that would result in a few days of pain after to recover. If I go to a party, I can't stand around for hours chatting, I will need to sit down. But if I am sitting in the living room in the only chairs and all the action is in the kitchen (why do parties always end up in the kitchen), why did I waste my energy on a situation which causes physical pain? So correspondingly, why do I want to spend time with someone who causes emotional stress?

Sometimes relationships end because our circumstances change. Maybe we move far away. Maybe we change jobs. I have friends who I used to see regularly on hiking, snowshoeing, or skiing trips. Now because of my back I don't participate in those activities so we have grown apart. If I see those friends, I am happy to spend time with them but since our activities don't intersect anymore, we get together much less frequently.

Life goes on and we change and need to accept that. We re-prioritize the important things in our lives. We do not mean to offend or hurt others but sometimes we need to move on. A social 'detox' is sometimes what is needed to regain or retain a feeling of happiness in our lives. Just was we clean out the toxic chemicals in our cabinets, we clean out the toxins in our address books.

Another cancer statistic

I don't know what the real number is but coping with a friend or family member with cancer can either strengthen or sever their bonds. Sometimes gaps in a relationship can no longer be covered over while dealing with the more important life or death decisions and treatment of a cancer diagnosis.

It is not surprising to me. Cancer is almost as stressful for the family and friends as it is for the patient. I know of several cases of divorce or separation from online breast cancer message boards. Many of them were relationships that had been hanging on for years and with the added strain of cancer causes the relationship to fall apart. A divorce can be another unwanted cancer side effect.

It is difficult to think that in the middle of a medical disaster like cancer that sometimes the expected emotional support from a friend or family member just isn't there. Boston Red Sox pitcher John Lackey is divorcing his wife while she is in treatment for cancer. I don't think he deserves any blame in this. Its not his fault that his marriage fell apart at the same time his wife was in cancer treatment.

Relationships fall apart for different reasons all the time. A cancer diagnosis can be the last straw that ends a relationship. Also if a friend or family member cannot cope with the fact that someone they care about has cancer and they flee, the relationship will end. The patient is forced to cope with their medical adventures. Any other person is not forced to cope and sometimes can't and the relationship ends. I have friends who are no longer friends as a result of their lack of support.

I was lucky in that my husband was there for me through treatment. I have friends who were alone - one woman went to chemo by herself because she had no one to go with her. During treatment my husband was allowed to be there for everything but was not allowed to see my weight on a scale (the nurses were very cooperative with this). I think our relationship got stronger as a result. 

But many are not as lucky. But neither party deserves any blame for the divorce. John Lackey should not be blamed. I find it harsh when the media or others blame someone for a divorce in the middle of a medical disaster. Perhaps the relationship couldn't handle the added stress. But there is no blame here. It just another side effect of cancer - the gift that keeps on giving.

Baggage, moving on, and burning bridges

In life, we all collect baggage of all kinds. That's just what makes us human beings. Some kinds of baggage we learn to cope with - that bad break up, being tormented in middle school, etc. Some kinds of baggage we are stuck with - the medical issues that never go away or change our lives forever.

It doesn't matter what kind of baggage it is, we learn to cope and move on with our lives. We adapt and continue to grow. Some things we put behind us and somethings (like that pesky cancer thing) we keep with us and adapt. Some things turn toxic and we may have to bur our proverbial bridges.

Taking the drastic step of burning one's bridges is not always the best thing in life. Is it playing chicken and running away? Or is it taking steps to rid oneself of undesired companions - whether they are people, emotions, or things? I have never been a fan of burning one's bridges. My theory is that if you keep on burning your bridges, you will find you have none left to burn - as there is nothing left in your life.

However sometimes what was once a good thing - maybe a close friend, a solid marriage, or a good job - is no longer that. You and your friend have grown apart. You and your spouse have chosen different paths in life. You made a career change. Whatever it was that made you happy doesn't any more. It stresses you out. It causes you emotional upset. Then it may be time to cut some ties and burn some bridges.

The past four years of my life have changed me for good. Cancer and its treatment has changed me. In May of 2007, I was working full time, spent sometime on line, and didn't have a blog. Then I had that 'bad' mammogram, got laid off from my job (two weeks before my diagnosis), and started to blog. My life is now completely different. I don't work full time and probably never will again - unless by some miracle I find the perfect job that I can do mostly from home. I have had so many medical appointments I can find my way to the hospital with my eyes closed. I am on line. I blog. I am on Facebook. I tweet. I participate in numerous online communities. I am also happier than I have been with the balance of my life (except for the damn doctor appointments and medical crap) than I have been in a long time.

I find a communicate with many people online. If you aren't online with me I probably don't communicate with you very much. Some friends who I used to talk with regularly aren't online so I don't communicate with them as much any more unless one of us makes an effort to get together. I also am not as patient with people about getting together. If it gets to complicated to schedule, I am just not going to bother. I have learned to allocate my physical resources on the things that are important. I don't wait for people who are late (being late is just plain rude - it says 'you are not important to me' to the person you are late in meeting). I don't play numerous rounds of phone tag with anyone.

The one person I communicate with off line is my husband. He never checks his home email. He never doesn't tweet. He isn't on Facebook or any online community. But that's okay because we live in the same house together. I do communicate with family members by phone and rarely online as well.I also have a couple friends who make the effort to pick up the phone and call and get together with periodically.

But all those other people who haven't moved on line with me, I probably have moved on from. Is it me keeping up with technology vs. them not? Or am I being selfish in not keeping up with them off line. How do you know what's going on with my life if you don't make an effort, read my blog, go on Facebook? As my health went 'south' as they say, I moved online to communicate about my medical issues. It is my way of communicating now.

Am I supposed to call everyone regularly and fill them in on my life and medical issues? Or why should I bother? I don't want to talk about my medical issues all the time which is why I may not call. I don't want to hear day after day 'so how are you feeling', 'how was your doctor appointment', 'how is your back/shoulder/arm/elbow/knee/ankle/incision doing'. They may be well intentioned but I am not going to talk about it again and again.

Sometimes what was once a good thing has become baggage and you need to move on. Its how you handle the moving on - can you adapt or do you need to be a bit more drastic and burn a few bridges as you go?

Medical conditions are isolating

I have found that all medical issues can be isolating. I was going to title this post 'Cancer is isolating' but its not just cancer, its any medical condition. We have all experienced the common cold where we decide to lie low for a day or two because we don't feel well - we don't want to spread our germs but we also don't feel like socializing and interacting with others. This is normal.

But what if someone doesn't feel well for several months - going through cancer treatment for example - where you don't want to make the effort (which appears to be huge) to pick up the phone and talk to your friends or go out and socialize because it might expend energy. Its not lying around feeling sorry for yourself, but just not feeling up to doing much. When this lasts for the six months of cancer treatment, the resulting feelings of isolation and ensuing loneliness can be very profound.

At a cancer diagnosis, the patient is stressed and trying to cope. Well meaning friends may offer to help but they are rebuffed by the stressed patient. The friends may try again and keep getting turned away as the patient is not feeling up to interacting. Talking about what their going through is admitting they are sick and their cancer is real. Good intentioned but misguided questions from friends can be painful to hear. Relationships start to fall apart. The patient isn't feeling up to interacting. The friends are feeling rejected because of the continued turn downs and call less often. And so the downward spiral goes on.

How to hang on to and mend the relationships? The friends need to realize the patient is going through a stressful life altering event. The patient needs to realize the friends really do mean well, even if they don't understand. As we grow and change through the experience the relationship may or may not withstand the pressures. And life goes on, the seasons change. People change. A nasty medical diagnosis forces unwanted change down the patient's throat.

Then I read that having a social life is as important in life as not smoking or drinking in terms of preventing health issues. This may be true but sometimes I have needed to put my social life in the backseat as I struggle with medical issues. For the past few weeks, my health has taken me on a roller coaster ride and I have been less than social. I did go out for dinner with a friend last night and it felt good. I will spend the next couple of evenings with my husband, as he is may mainstay. Even when I don't go out of the house, he is my social life, ensuring that I interact with another human being. The cat demands my attention - and food and water. I maybe living in a little cave of my medical crap but I am interacting.

Okay, I admit, I overdid things yesterday. Yes, me. I admit it. I did work from home but broke down and took a short walk - about 15 minutes because it was SO nice out. My hip felt okay while walking but when I got home, I needed to ice it. I went out to dinner with a friend and then we went shopping for a little bit. When I sat down in my car, I was in excruciating pain and I had to sit there for a few minutes before I could drive. I came home and iced my hip and took more pain pills. This means my hip has reached that bad period - where I am not in pain until after I am done what I am doing. This means I am in danger of over doing things regularly. (But I will be in denial and pretend its not happening. I will continue to take my pain meds until my hip stops hurting.)