Most Embarrassing Cancer Moments

I think everyone has embarrassing moments in their life. I mean who didn't awkwardly walk into a wall at one point, trip as they entered a room or a building, or realized you got home and you had a toothpaste stain on your shirt since morning - after having a big meeting at work.

My famous embarrassing moments in life include also coming back to the hotel at the end a day at a very busy and important conference and realizing I had been wearing one blue shoe and one black shoe all day long.

But my mortifying cancer moments include:

• Needing a quick appointment with  my cancer surgeon and realizing after he didn't come back for 1.5 hours in the exam room that maybe I was really done with that appointment. (Yes I waited for that long before going to ask the nurses if he was coming back.) And then I had to wait longer for him to come back and tell me that everything was okay. So much for a quick appointment.
• While riding home from chemo with my husband driving, we stopped at a light. When my husband pulled away from the light my wig went flying in to the back seat! Leaving me bald in the front seat.
• After waking up in post op after my thyroid cancer surgery, I was not upset not because I had cancer but because I was wearing a clean gown and the doctors and nurses therefore had seen me naked. (Talk about twisted priorities!)

Those are all I can remember at this point. But I am sure there are more. I hope other cancer people can relate.....

Changing Stressors

As life goes on, my stressors have changed. Or maybe just the list gets rearranged. When I first started blogging, breast cancer was my primary concern. But then my health started to fall apart and things have changed.

At my breast cancer diagnosis, I quickly prepared myself to cope with breast cancer and I came up with a plan - support groups, etc. And I dealt with it. 

Then I got gall stones and had my gall bladder out. Then I found out I should be seeing an endocrinologist about my thyroid cancer which made it harder for me to ignore it. When I went to one she sent me for an ultrasound which found some thing on the thyroid bed which we had to follow and it stressed me out for a while. Then my back started hurting. then I was diagnosed with fibromyalgia and rheumatoid... Somewhere in there I got a root canal too....

Where am I going with this? I had lunch with two breast cancer friends this week. One of them has  multiple other current health issues. We were talking about them and she said that breast cancer was the last thing on her mind these days. She needs to get the rest of them fixed so she can back to worrying about breast cancer.

For me, my stressors now revolve between what is my current worst (usually health) problem. It can change daily. I sort of hang on during my roller coaster ride. 

So how do I cope? I have created my own little support world. I burn off stress by going to the gym three times each week. I have a therapist I see monthly. I have a meds therapist (with the good drugs) to keep me sane. I have a weekly knitting group at a local cancer center. We all are coping with cancer. I also get together with my other 'unhealthy' friends and we hang out and talk bitch about our health concerns.

Since I can't be healthy, I just try to keep my sanity. If at all possible.

What the Patient's Think

I always applaud research that consider the patient's side of a cancer diagnosis. Honestly how many more research studies do we need on mice that look for new cool drugs (but finding a cancer cure would be a nice thing)? I mean all that research is nice, but I think all us patients would appreciate a bit more information on the impact of cancer diagnosis and treatment.

Face it, when we are diagnosed with cancer, we wonder are we normal in our reactions, treatment plans, dealing with doctors and more. Its normal to wonder "am I the only one freaking out at my doctor?" or "why am I running to the library and surfing the internet to find out what the doctor suggests is all about?".

CancerCare put together a Patient Access and Engagement Report for 2016. I found it very interesting. And it was very nice to know that I wasn't the only one with some reactions and issues.

Just knowing that you are not alone in your thought process can be very comforting.

Getting the 'good advice'

Becky, over at BCBecky blogged about The costs of cancer treatment. I read her post and then commented on it. And then, I started thinking (sorry, I do think sometimes).

In her blog post, Becky talked about the costs of treatment, but not just the financial ones. And the sustainability of keeping up with her current course of treatment. Of course she has advice from people who may not have had cancer. My thought would be talk to the people who have had cancer and had to make the same types of decisions and then make your own choice.

I really think that as those who have had cancer, we need to take our learned knowledge and help others who are facing the same decisions. After a cancer diagnosis, we have gone through so much as we made decisions, coped with the treatment, and are still here to talk about it. So why can't we help others?

In making our decisions, we had to educate ourselves  and go through the decision making process. We learned the 'unsaid' portions of the decisions we made. For example, I do not know a single woman who has gone through breast cancer, with a mastectomy, and reconstruction (not me) who has not said 'I wish they had made sure I understood that part', 'I didn't realize that until after' or 'I don't think I knew it would take so long' and other statements.

Honestly I know there are many decisions I wish I had  known more about my options before I chose. Some of the best advice I ever got was from my friends who had been through the same crap. Because they knew. The doctors couldn't tell me. The nurses couldn't tell me. I think they assumed I would just take their suggestions and be a lemming.

But only by talking to my friends with breast cancer, or whatever ailment I needed to make a decision for, did I learn 'the truth, the whole truth, and nothing but the truth'. None of them had medical training or social workers or anything like that. But the difference was they had been through it themselves. If we could provide 'good advice' to others, that would be great.

The Importance of Social Media For Cancer People

I read an interesting article yesterday on how social media did not bring back the Chibok girl - the girl in Nigeria who was kidnapped by Islamic terrorists a couple of years ago and reappeared out of the woods.

After the kidnapping of over 200 girls in 2014, a Nigerian lawyer came up with the #bringbackourgirls. This exploded over social media and all sorts of people tweeted, selfied, blogged, and wrote about it all over the internet. But what exactly did that do to bring them back? Nothing. By doing this, we showed we cared. But we didn't solve the problem.

Social media is about showing you care about things. That's it. You can tweet, blog, facebook, message, instagram, etc your emotions showing how much you care. But, as the article says, if you want to act - donate, walk to work, etc. Do something, don't just show your emotions.

Social media also provides emotional connections with your friends and family. This is another emotional tie. But sharing a picture of your cousin's new baby isn't the same as seeing your cousin's new baby.

For cancer or other types of  patients, social media allows us to show our emotions about dealing with our cancer and share our lives with our friends and family. The only reason I started blogging was to communicate my cancer crap with others (anything to do with cancer is crap). I am not trying to change the world.

I just want to write to vent. Any crappy diagnosis comes with a roller coaster of emotions on the side, or actually swallowing your brain. There are so many ups and downs you can't keep up. I found I needed a way to vent my emotions and get things out there. I also went to message boards and asked questions and got more emotional connections that became friends and people who relate.

I think there are many other cancer people on social media who may have calls to action, requests to follow, or other content in their writings. But they are also sharing their emotions and creating connections.

I am not chasing followers. I frankly do not care how many people read my blog. I do not want to save the world. I do not want to cure cancer. I wouldn't mind if a cure was found but its not going to be on my blog. I just want a way to show my emotions.

Being Open About Cancer

Here's a question: how open are you about your cancer diagnosis? I realize this is a matter of choice. I think of myself as being fairly open about talking about my cancers, but it took me until my second diagnosis to learn to talk openly about it. But I never mention it with  new people unless I am in a cancer 'situation' such as at a cancer patient event.

I think learning to talk to your cancer diagnosis is part of learning to accept it. (Remember those five stages of acceptance???) But as a result of seeing friends run for the hills at the word 'cancer', many of us learn to keep quiet about it.

Last week, my husband and I came to the realization that our lawn is not going to mow itself and we need a new lawn mower. I started doing some research and shopping online to get some ideas of what we want/need.

I decided if I am going to be able to do anything about mowing the lawn, it has to be easy to use. Self propelled is a must for both of us - our lawn is on a hill. An electric start means I could actually start it myself. There are many things I cannot do around the house because of my health so if there is a possibility I could help with anything, I try to make it possible.

So I started doing my research and looking for what is available with the features we want vs. the ones we can afford and found this in a real Troy Built mower review at Lowes:

"I used to use a Troy Built push mower, but when I was diagnosed with prostate cancer and started chemo, I began to lose the strength I needed to do my entire lawn with my push mower.
I decided to buy the Troy Built electric start self propelled mower.
Just let me say, I can now mow my entire lawn with strength to spare"

I was quite taken aback by this. I mean how many people would include their cancer diagnosis in a lawn mower review? If I had written it, I would probably have said "but when I was diagnosed with significant health issues and its treatment caused me to lose strength...." or something along those lines.

Anyway, I brought this up with a group of friends with cancer and asked them how open they are about their cancer diagnosis and what they think of this guy putting it in a lawn mower review. There were some snickers and then we decided:

1. None of us would have ever put their cancer diagnosis in a product review, much less a lawn mower one.
2. It must partly be due to the fact that it was a man who was probably less sensitive on his medical issues. (Not to be sexist but men tend to be more open and less concerned with the responses to what they say than women.)

We did agree that it really depends on the situation and who we are with on how open we might be. But how open are you about your cancer diagnosis?