Not My Story To Tell

One important issue when you have cancer or anything else 'yucky' is that well meaning friends and relatives often take it upon themselves to retell your story, with embellishments, to others. Its not their story to tell.

As the patient, you have the right to decide who to tell, what to tell, and when to tell about your ailment. This is one of the big reasons I have a blog. I get to funnel the information and tell what I want after I have a chance to digest it, when I want to tell it.

You might have noticed I do not write about other's health challenges. I might mention someone but I don't tell their story. Its not my story to tell. Its theirs.

This is an important point to remember. You are not entitled to retell all the details of someone else's medical misadventure. Its okay to tell people that someone is coping with their ailment. If the patient has consented, you can tell others how they are doing. But you don't get to tell the blow by blow story of it. And even if they have consented, you are not their PR agent spilling all.

Patient, Yuckyailment, is the one who gets to decide who gets told what amount of information. Being sick is a private matter. So get your nose out of it.

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.

More Not Blogging

I have been very busy the last few day weeks. Now that I can drive, I have been driving and going places and thus wearing myself out and making my knee hurt. I had Thanksgiving prep for food and house guests and dinner for 14. I also have had some doctor appointments that were postponed from when I couldn't drive. I still have lots more appointments for the same reason as well as PT for my knee.

So now that I am getting back to normal I have things on my mind for blogging topics. They will not get all the coverage due  because I have been a slacker for my reasons above.

• I have pondered the issue of losing friends and making new friends. In the past year, I have lost two friends. Mostly because of my actions because I could no longer with their actions at attitudes. When you part ways with long time friends I think the holidays make you notice their absence more. I think I am still comfortable with their absence in my life. The stress they caused me no longer bothers me. I can't miss friends when I would get so aggravated in trying to get together and getting together. I'm glad I'm done but I still feel some regrets - some because I waited so long to take actions.
• This 'gentleman', and I use the term loosely, really pissed me off.
  
  If you have MS, or PTSD after serving in the military, or even breast cancer, this a$$hole thinks we are 'undesirable'. Why? Because he is against having a marijuana dispensary in his neighborhood, which is one of the nicest in Boston.
• My health is may be telling me new things that I am not ready to discuss. Which aggravates me more. Only four appointments this week, plus two PT trips. I'll discuss later, maybe. But I am really aggravated. I am not allowed to have more ailments than I already do.

That's all for now. But you get the idea. I survived Thanksgiving and it actually went very well. Iam now looking at Christmas and hope it doesn't stress me as much again.

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 A Concept!

I met with a pharmacist yesterday or a pharmacologist. It was great. When I had my annual physical with my primary care doctor in September, she was concerned about my medications and interactions.

The pharmacologist went through my entire list of medications - prescription and OTC - and asked why I was taking each one. Then she went through and looked up possible interactions with them. She gave me some advice which I found very helpful.

• Because I am on Prilosec for GERD from a sliding hiatal hernia, I need to take it in the morning, 30 minutes after my thyroid medication and then wait another 30 minutes before eating. I was taking it in the evening.
• I also need to get off prednisone for my RA.I am on a low dose but its not a good idea to stay on it long.  I will stay on it until January when my hopeful new RA medication will kick in and then I can ditch it.
• As my pain management doctor has already suggested, and I really want to do, is to reduce my Lyrica dosage or even get off it. My previous pain management doctor, if I said I had pain, he would say, 'let's increase your dose'. But he never gave me any information why or requested any scans or testing. This is why he is no longer my doctor. I meet with my pain management doctor next week. 
• I also need to change my Calcium with D to calcium citrate not calcium carbonate - something I completely blank out on when in the store.

Also, I am only on about four medications for the side effects of other medications. We had to laugh at that. 

At the end of the appointment I felt very good. A knowledgeable neutral party had looked at my meds and found that I need to be on the meds I take. I need to be careful about some interactions and see if I develop any symptoms and cut down if needed. 

I feel like I should do this every five years or so. I feel that not all doctors look at what other medications I might be on before prescribing something new.  A good experience, for once.

Not A New Ailment

So I had a medical test recently that came back abnormal. It was then repeated. Then I had another test which also came back not so good and now a referral to a new kind of doctor that I have never had before.

My doctor sent me a note over the weekend with a referral for the new department. I asked for a copy of the latest test results and if she had a preferred doctor for me to see.

I'm pissed.
I'm not allowed to have another ailment.
That's it.

F**k.

I'm really pissed.

More when I feel ready to talk about it. I just needed to vent.