Privacy and support

With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.

I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with  her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.

Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.

My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.

My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations

When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.

Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.

The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping -  have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so.  And if there are repeated requests over and over the patient's stress mounts at an already stressful time.

A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.

Privacy

Somehow a change has happened. All of a sudden, I have many fewer doctor appointments. I saw my rheumatologist a couple of weeks ago. I see my therapist in mid August and then nothing until October when I see my rheumatologist and dermatologist.

How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.

My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.

I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.

One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.

I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.

How would you answer the question?

Someone asked about this on one of the many cancer boards I am on recently, post cancer how do you answer the question: "Do you have any significant health issues?" Let us pretend this is not a doctor's office where we would launch into a twenty minute spiel that includes multiple surgeries, treatment protocols, on going side effects, latest tests and their results, current prognosis, medical facilities used, and current medication list. If someone really needs to know my medical history I need a sheet or two of lined paper, not two scrawny little lines to write in tiny print.

But what if you wanted to go bungee jumping, sky diving, or something which required a medical release? Do you say 'I had cancer and am mostly fine except for a touch of lymphedema'? (Note: my back would preclude me from any of these activities myself.) Or do you say nothing because you are no longer in treatment?

My personal feeling is that if my medical history is going to make a difference I might tell them about the majority of my medical adventures. Is it important for anyone to know I had my gall bladder out four years ago?  Only to my doctor or a surgeon looking to cut into other parts of me.

I will never use the word 'survivor' to describe myself except in the context of  'surviving millions of medical adventures'.  But I could be persuaded to write 'I had cancer twice'. Then I get weird looks and lots of questions and people tend to tell me their medical history. And then we get to have a big discussion about health ailments.

So I guess I would be more inclined to keep my mouth shut about my medical history.

Telling your story

I know I have blogged about this before. You are the only one who gets to tell your cancer story. It is your body and your life and the one thing you get to choose is to whom you tell your story and when. This is a big red flag for me.

Recently this became clear. One person was ready to make an announcement with the best of intentions about another person and included their cancer story in it. The person who it was about was not happy about this. They had been purposely keeping their cancer story private because they did not want their employer to know. So the story was rewritten with out the cancer story in it.

Another time one of my neighbors who I don't know very well - just because our paths don't cross - saw me outside and came rushing over and starting asked me if I was doing okay or not obviously referring to cancer. One of my other neighbors must have told them. I don't know what was said but obviously they thought I was dying or something.

No one can tell anyone's cancer (or other icky medical diagnosis) story but the person with the ailment gets the privilege of sharing or not. So everyone else just bite your tongue.