Angelina Jolie, cancer, and why you might have privilege too...

I got severely shitty with the large number of “check your privilege” tweets on twitter today about Angelina Jolie’s news that she had opted for preventative bilateral total mastectomies due to her genetic risk for breast cancer. My reasons for being so grumpy went deeper than 140 characters could explain, so I kept my mouth shut and waited until I got home to write this.
The fundamental issue I had is that there is only one reason to have a preventative mastectomy, and that is to avoid a condition that could KILL you. So if you are worried about anything other than survival, when you read about Angelina Jolie’s choice, Check YOUR privilege.

YES, that’s right. If you didn’t get a cold fucking chill down the back of your neck, and that little voice in your head saying “I know why she did that”. CHECK YOUR FUCKING PRIVILEGE.

I’m not saying that you haven’t had to think about death, dying, or risk to your life.

In fact, most people, by the time they hit 50 have probably had some form of lump or bump, or scary moment that has meant they have sat down and written a will, and thought about their life-span and how long it may be.

But MOST of us had those moments thrust upon us.

I didn’t go out looking for trouble. It came to me.

My friend didn’t expect to find a fatal cancer, it was caught by her lovely GP.

My Uncle didn’t expect to start having seizures for no reason – but he did.

And THEN, and only then, did we start to take action to do with our own mortality.

It takes courage to look death in the face and make sensible choices. To take steps to decide to fight. Perhaps even to stop fighting, and make the decision to turn and face it and make the most of time remaining.

It takes bravery.

It also takes time, and support and endless cups of tea and good people.

A lot of people don’t look.

They avoid check-ups.

They skip prostate exams.

They delay mammograms.

They don’t visit the doctor, because “everyone has blood in their poop sometimes.”*

They make excuses, they look the other way. They avoid the issue.

Because this shit is HARD people.

And this woman didn’t just deal with something when it came to her, she anticipated it, sought out the hard truth about her mother’s death and faced her own mortality. Took some MASSIVE steps to avoid a bad outcome in the future, and has reduced her risk.

But this took courage, and the insight that her body wasn’t in her control. That her genetic code could eventually turn against her.

A real understanding that she could die.

And that’s not a privilege, that’s life. But I think you missed the point if you are worried about who paid.

*they don’t. Always check with your doc if your poop has changed or you notice blood.

Organ donation. Not just the donor's decision...

There is a lot of mis-information outside the hospital about the organ donation stuff that people really care about beyond the medical jargon.
"Will the doctors be gentle?"
"Can we still have them for a funeral"
"Will they get less care if they can be used after death?"
"what about MY choice?"

I hope this is of help to someone, and if just one person takes steps to ensure that their organs will be available for donation, I am happy. A lot of the information on this page can be found at Organ donation NZ as well as being based on my own experience as an OR nurse (but not part of the transplant team).


There is plenty of heart wrenching information about those of our community who need a second chance by way of an organ donation. Enough information that I didn’t think twice about putting that I am an organ donor on my driver’s license.
It was an easy enough decision for an atheist like me, no rules from god, distaste from my family or concerns that the soul might in fact be stored in the heart. Just the idea that if I die young, the waste would not be so great if I could benefit someone else.
For the average Jo, there is not as much good strong information about what happens to the donor and equally importantly, the family of the donor.

An amazingly helpful link is this one here taking you through the donation process. Please read this before continuing on through my blog post.

In New Zealand if you wish to become an organ donor there are a lot of barriers between you saying yes, and the right thing happening when you die.

• Even if I say yes; if I die suddenly and my heart no longer pumps, there is a very high chance or organ death, and I can no longer be a donor.

• Even if I say yes, and I die of brain stem death whilst my heart continues pumping; my partner can say no.

• Even if I am a valid donor, and my partner and I say yes; any other family member can say no.

• Even if I am a valid donor, and everyone involved says yes; if they sign me off as brain dead, turn off the ventilator and I do not stop breathing within a certain amount of time, I will be put back on the ventilators to continue being cared for.

It is no wonder that the annual rate of deceased organ donors in NZ has always sat under 47 pa.
Not only do you need to be ok with it, but your family needs to be ok with it too.
Talk through the positives and the negatives.


The negatives.

Your family will be asked about this by an intensive care doctor, once the diagnosis of brain death is clear. They will be heartbroken and stressed and do not need to be making hard decisions at this time

Although the donor is brain dead, and would never survive without the machines helping them breathe, they appear very much alive, just asleep. – This can be hard to cope with.

The donor does not visibly ‘die’ (their cardiac and respiration stopping) in ICU. They are taken to theatre still breathing, with a heartbeat. - This can be hard to reconcile with the diagnosis of death.


The positives

There is more done for a donor patient to ensure a correct diagnosis of death, than is done on a non-donor patient.

If you have discussed donation with your family in advance and they understand what is involved and are happy for donation to take place, the idea that a positive is coming from it, can be a small ray of light in a horrible situation.

Once the patient is assessed to be a donor, and the family has been asked, donation is still very personal and the family can select what they are happy donating, e.g. My partner might be happy with donating my heart, but does not want my corneas taken – that is totally ok.

There is a donor coordinator whose only job is to help facilitate the smooth running of donations, and ensure the wellbeing of the donor and donor family.

The donor’s body is returned to the family for them to say their goodbyes in the same way as any patient who passes away in the OR.

The donor is treated just like any other patient in the OR. It is a surgical team working respectfully on them. Their wounds are sutured and dressed, just like they would normally be.

“Although confidentiality is maintained, recipients are able to write an anonymous letter of thanks to the donor family. These letters are forwarded through Organ Donation New Zealand to the family of the donor, if they wish to receive them. Donor families are also able to write to recipients and these letters are handled in the same way.” *“Each year in April or May, a service is held in Auckland in recognition of those who have donated organs and given the gift of life to others. A second service is also held on alternate years in Wellington and Christchurch.
Donor families, recipients and their families, and health professionals are invited to these services."

So PLEASE, if you do want to be an organ donor in NZ, don’t just ensure that it is written down. Talk to your loved ones about it and make sure everyone understands and agrees.
I have personally discussed this with my close family, to the point where my parent’s understand that I would still be breathing when I left them. They know as much as they can know so that if, FSM forbid something should happen, the decision has already been made and they can just go through the motions.

For more information on the limitations of NZ's current Organ Donor system please visit http://www.givelife.org.nz/ and take a look.

Character building isn’t just a cliché.

Kids aren’t resistant. They don’t miss stuff; they don’t always bounce back from loss and grief. Don’t be naive. Their experiences in childhood will shape them.
But negative experience building character isn’t just a cliché.

I’ve re-written the first bit of this paragraph about four times.
I don’t want to undermine the importance of the people who are a part of the loss I experienced in my youth. I also don’t want to use their stories in order to strengthen my own point of view. Their lives and deaths were their own, and should stay that way.
Let’s just say that before I was a teen we lost a lot of friends and family to accidents, cancer, and illness.
Not all of them were older. Some were younger than I was.
There was a hangover from this and it is not until I became an adult I realised my ideas of life, death and assumptions about what life will bring are not necessarily the norm.

Stuff that I do that some other people don’t.

Assume the worst if the land line rings after 9pm. – My family never calls each other at night because they know the palpitations it gives us.

Know the process when someone calls and says they are on the way to the hospital:
Call next of kin and tell them you will pick them up if applicable. (No-one freaked out should be driving)
Pack toiletries, pyjamas, bottled water, juice, muesli bars, and any meds that the person needs into a bag.
Grab coins and cash for parking
Stop at the petrol station and pick up some phone cards for recharging the patient/ family member’s cell.
Take a book, bottle of water and some sort of food for yourself.

Assume if someone gets sick enough to go to hospital that there is a risk of it being a really bad sign of things to come.

I know that if a doc says you have a 20% chance that is what it means. It doesn’t mean you are in the “miracle” category and the 20% thing doesn’t count for you.

That if a doctor says “hmm we need to take more tests”, it’s not a good thing.

That just because someone is young and cute doesn’t mean they are guaranteed passage through to adulthood without illness or injury.

That people don’t have to attend a funeral /tangi, and may not want to, and that is ALWAYS ok.

Needless to say, I assume that everyone else has had a wealth of experience with grief by the time they get to 30.

Someone was trying to tell me the other night what he thought “the appropriate” grieving period and process was for a particular situation. I had to explain to him that grief doesn’t come at your convenience, and there are no rules and regulations for what is “normal.”
A mother may never stop memorialising their lost child’s birthday. Or she may choose never to acknowledge it. It’s up to her. She is the only person in her position, just as the father of that child will also have his own process.
This difference in process is therein the issue.

I get really sick of people telling me I look surprisingly good or sound surprisingly calm when I call in on bereavement leave, or tell them about bad news. I get even sicker of people expecting me to hit a “get over it” time line by a certain point – always allocated by them.
It is worse when it is someone you love. I sincerely hope that when I am next bereaved my partner will let me grieve on my time, my way, with their support, and without being judged.
My ex didn’t even attend my much beloved grandfather’s funeral with me.
My grandfather didn’t notice.
I did, and that is what is important - those left behind.

I was going to leave it at that, but I’m going to get into some stuff to help cope while you are getting through the roughest patches if you are here from a Google search on grief, and don’t want to just hear me whinge.

Don’t ignore or bury your feelings. Screw what else is going on, do what YOU need to do.
If you feel like going kayaking for 6 solid hours, or beating the shit out of your friends in a sports game go for it (true story, and it was AWESOME).
If you feel like smiling and hugging and talking at the funeral, do it. There are no rules, as long as you also respect how other people feel.
Feeling alone and often angry or sullen is to be expected, just give clear boundaries, and find a way to get the space you need, without attacking or hurting those who may want to cling.
Communicate your feelings. Sometimes just saying “I’m angry ” will make you feel a bit better, even if it is a “bad” feeling. And chances are someone else will feel the same way.
Learn and understand the stages so you can recognise what you may be going through, and allow yourself to transition through the process.

With all of this stuff the biggest thing is, don’t try and do it alone.
If you are afraid of burdening friends, use 7 and call a different one each day.
If you are living with a partner, allocate a time to be negative but have a clear stop point and go for a walk or something nice after you have gotten out of that head space.
There is nothing wrong with paying a therapist so you can talk through things, without feeling like a burden. (nb feeling like a burden and being one are different, friends like to support!)

Grief is not a timeline from horrible to A-Ok. It is a rollercoaster.
My personal rollercoaster goes a bit like this... get plenty of good stuff done in the first two days, melt down, perk up, melt down, start having normal weeks where I don’t think about things then all of a sudden a smell, or something random (one time a Lego boat) sets me off back to an evening of sobbing uncontrollably unable to breath, feeling like my heart is breaking again.
Slowly but surely I start putting the missing person, or part of my life (in the case of my injuries) into a category of something like a treasure. Where I can control how I view them. I wait until I have the time to pull them out of the safe place I store them and hold them gently in my hands and admire them. I look at them from all angles, and take the time to acknowledge that I miss them, but I’m ok without them.
And you have to congratulate yourself when you reach that point, because you are awesome for getting there, no matter how short, or long a time it takes.