Anger

I'm going through an angry phase at the moment, where I find myself shouting at trivial stories on the television. I've also been angry with myself for perceived failures in bringing up the children - a painful and futile self-loathing because I've probably done the best I could in the given circumstances. But I worry that I've failed them, and myself. I feel like such a hypocrite, getting angry with other people on television for complaining about their seemingly minor problems, finding it hard to feel compassion for them, even though what they've suffered was probably unbearably hard for them.

The case I'm talking about was a woman talking about how medicinal cannabis helped her deal with the "unbearable" nausea and metallic taste from her breast cancer treatment. My response was "get over it, sister! It happens to everyone. There are treatments you can take to deal with it. If medicinal marajuana works for you, fine, but stop complaining!!! Be glad that you're alive, that you have a curable cancer, that you didn't have febrile neutropenia with nearly every round of chemo, that you didn't then develop an aggressive brain tumour, possibly because your immune system was so severely compromised by the breast cancer treatment." I understand that chemo makes people feel like crap, but they should be bloody grateful that there's something that can help reduce the risk of their cancer recurring. I wasn't even able to complete all the recommended chemo for my GBMs  because my blood counts fell too low. So I have to have faith that I will get through this on the treatments I'm on, and the diet and lifestyle changes I've made - though giving up dairy and meat is proving difficult. I can't see the point of complaining, and I feel very impatient with those who complain about relatively minor things. And then I feel guilty and hypocritical for feeling angry and finding it hard to find compassion for them. Angry. Angry. Angry. I feel like digging up the garden, throwing out boxes of papers, ripping out the gutter guards on the shed and violently cleaning the gutters. If I could run, I'd run for miles until I collapsed from asthma or the exertion. But my legs are still wobbly and uncoordinated, despite my daily walks, and if I try to run I look like an uncoordinated puppet, and I can only go a couple of steps.

Ben tells me it's normal to feel anger after all that I've been through, but while it's reassuring to know I'm not a total freak, I don't like feeling like this. I hate it. I want to be peaceful, calm, and loving towards other people. I don't want to shout at stupid things on the television. I don't want to get impatient and upset with my kids when they play happily at night and I just want peace and quiet. I'm sick of the daily effort involved in staying calm, to stay positive, to be grateful for being alive and physically healthy, to trust that I will survive cancer for many decades to come. It seems incredibly rude to be given such a strong reminder of my own mortality. But maybe I needed it to turn my life around, to focus on my children more than on my career, to stop trying to "save the world" as Ben puts it, and to work on saving myself.

So it was helpful to find these things about cancer anger
http://www.wherewegonow.com/debbies-blog/coping-cancer-anger

http://www.wherewegonow.com/debbies-blog/survivors-nest-five-tips-coping-cancer-anger-home

http://www.dailymail.co.uk/health/article-2003214/Cancer-survivors-Depression-exhaustion-anger-downside-beating-disease.html

And this article about the relationship between physical and emotional pain

http://sanlab.psych.ucla.edu/papers_files/Eisenberger(2012)CDPS.pdfhor

and to get this practice from Rick Hanson (author of Buddha's Brain) on being at peace with the pain of others. I need to apply it to myself

---------- Forwarded message ----------
From: Rick Hanson <news@rickhanson.net>
Date: Sat, Sep 13, 2014 at 8:14 AM
Subject: Being at peace with the pain of others - Just One Thing

Hello, One of the most challenging things to do in our relationships is to be both caring about the pain of others . . . and in one's core be at peace with it. This is a tricky path to walk, threading your way over uncertain ground between indifference or dismissal on the one hand and enmeshment and overwhelm on the other. And for me personally, lately I've needed to try to find this path for myself. So I hope you will enjoy this week's practice:being at peace with the pain of others. Warmly, Rick #143 | 9/12/14    Just One Thing Just One Thing (JOT) is the free newsletter that suggests a simple practice each week for more joy, more fulfilling relationships, and more peace of mind. A small thing repeated routinely adds up over time to produce big results.  Just one thing that could change your life. (© Rick Hanson, 2014) Click the button above or text JUSTONETHING to 22828 to subscribe to Just One Thing. (You can unsubscribe any time.) Gohere for an archive of past JOTs.     This comes from Rick Hanson, Ph.D., neuropsychologist, New York Times best-selling author, Advisory Board member of the Greater Good Science Center at UC Berkeley, and invited lecturer at Oxford, Stanford, and Harvard universities. See Rick'sworkshops and lectures.  Taught by Rick Hanson, PhD, this yearlong program uses the power of positive neuroplasticity to hardwire more happiness, resilience, self-worth, love and peace into your brain and your life. Register today!  Can you stay open to the pain of others? The Practice  Being at peace with the pain of others. Why? Humans are an empathic, compassionate, and loving species, so it is natural to feel sad, worried, or fiery about the troubles and pain of other people. (And about those of cats and dogs and other animals, but I'll focus on human beings here.) Long ago, the Buddha spoke of the "first dart" of unavoidablephysical pain. Given our hardwired nature as social beings, when those we care about are threatened or suffer, there is another kind of first dart: unavoidable emotional pain. For example, if you heard about people who go to bed hungry - as a billion of us do each night - of course your heart would be moved. I'm usually a pretty calm guy, but when I visited Haiti, I was in a cold rage at the appalling conditions in which most people there lived. On a lesser scale but still real, a friend's son has just started college and is calling home to tell his mom how lonely and miserable he feels; of course she's worried and upset. But then - as the Buddha continued with his metaphor - there are the second darts we throw ourselves: rehashing past events, writing angry mental emails in the middle of the night, anxious rumination, thinking you're responsible when you're not, feeling flooded or overwhelmed or drained, getting sucked into conflicts between others, etc. etc. Most of our stresses and upsets come from these second darts: needless suffering that we cause ourselves - the opposite of being at peace. Our second darts also get in the way of making things better. You've probably had the experience of talking with someone about something painful to you, but this person was so rattled by your pain that he or she couldn't just listen, and had to give you advice, or say you were making a big deal out of nothing, or jump out of the conversation, or even blame you for your own pain! In other words, when others are not at peace with our pain, they have a hard time being open, compassionate, supportive, and helpful with it. And the reverse is true whenwe are not at peace ourselves with the pain of others. So how do you do it? How do you find that sweet spot in which you are open, caring, and brave enough to let others land in your heart . . . while also staying balanced, centered, and at peace in your core? How?  Keep a warm heart Let the pain of the other person wash through you. Don't resist it. Opening your heart, finding compassion - the sincere wish that a being not suffer - will lift and fuel you to bear the other's pain. We long to feel received by others; turn it around: your openness to another person, your willingness to be moved, is one of the greatest gifts you can offer. To sustain this openness, it helps to have a sense of your own body. Tune into breathing, and steady the sense of being here with the other person's issues and distress overthere. Have heart for yourself as well. It's often hard to bear the pain of others, especially if you feel helpless to do anything about it. It's OK if your response is not perfect. When you know your heart is sincere, you don't have to prove yourself to others. Know that you are truly a good person; you are, really, warts and all, and knowing this fact will help you stay authentically open to others. Do what you can Nkosi Johnson was born in South Africa with HIV in 1989 and he died 12 years later - after becoming a national advocate for people with HIV/AIDS. I think often of something he said, paraphrased slightly here: "Do what you can, with what you've been given, in the place where you are, with the time that you have." Do what you can - and know that you have done it, which brings a peace. And then, face the facts of your limitations - another source of peace. One of the hardest things for me - and most parents - is to feel keenly the struggles and pain of my kids . . . and know that there is nothing I can do about it. That's a first dart, for sure. But when I think that I have more influence than I actually do, and start giving my dad-ish advice and getting all invested in the result, second darts start landing on me - and on others. See the big picture Whatever the pain of another person happens to be - perhaps due to illness, family quarrel, poverty, aging, depression, stressful job, worry about a child, disappointment in love, or the devastation of war - it is made up of many parts (emotions, sensations, thoughts, etc.) that are the result of a vast web of causes. When you recognize this truth, it is strangely calming. You still care about the other person and you do what you can, but you see that this pain and its causes are a tiny part of a larger and mostly impersonal whole. This recognition of the whole - the whole of one person's life, of the past emerging into the present, of the natural world, of physical reality altogether - tends to settle down the neural networks in the top middle of the brain that ruminate and agitate. It also tends to activate and strengthen neural networks on the sides of the brain that support spacious mindfulness, staying in the present, taking life less personally - and a growing sense of peace.

Cleveland Clinic videos and an article on patient experience and empathy

Ben sent me this link today. The LGH are moving towards patient-centred care, and is distributing this video on empathy to all staff

https://www.google.com.au/search?site=&source=hp&ei=E6gHVNS5HIWD8gWKwIGoDg&q=cleveland+clinic+patient+experience+video&oq=cleveland+clibic+patient+&gs_l=mobile-gws-hp.1.1.0i13l5.3527.14361.0.18141.26.26.0.4.4.1.913.13444.3-12j4j4j6.26.0....0...1c.1.52.mobile-gws-hp..7.19.6284.0.8g3BwbRVp_c

This second one brought tears to my eyes
https://www.youtube.com/watch?v=1e1JxPCDme4

This article, summarising a patient experience and innovation summit,  has some great ideas and insights:

http://www.beckershospitalreview.com/quality/innovating-the-patient-experience-with-empathy-a-recap-of-cleveland-clinic-s-summit.html

And the two links within this article are also great
http://www.communicatewithheart.org/Newsroom.aspx

This is a powerful and touching video.

https://www.google.com.au/search?site=&source=hp&ei=E6gHVNS5HIWD8gWKwIGoDg&q=cleveland+clinic+patient+experience+video&oq=cleveland+clibic+patient+&gs_l=mobile-gws-hp.1.1.0i13l5.3527.14361.0.18141.26.26.0.4.4.1.913.13444.3-12j4j4j6.26.0....0...1c.1.52.mobile-gws-hp..7.19.6284.0.8g3BwbRVp_c

I used to think I empathised with patients and practiced
patient-centred care before I became a patient myself. The perspective
is completely different on the other side, as many of you know from
your own experiences. When you're very unwell, or in pain, or in
shock, or worried about your known or unknown diagnosis, or simply
exhausted, it's very hard to take in all the information you're given
by well-meaning clinicians. I discovered that my familiarity with the
conditions I saw as a neuropsychologist possibly made me less aware of
how unfamiliar, frightening, and overwhelming the experience of being
a patient was for my patients. I maintained what I hoped was a
supportive and empathic yet cheerful and encouraging  disposition, not knowing that I would
experience being on the receiving end of similar approaches, and
finding that it made it harder for me to express my feelings and
concerns, and to ask questions. I didn't want to be a difficult
patient. I found the cheerful, competent clinical facade, and the empathetic one, difficult to
penetrate as a patient.  I still do, and I'm reasonably well-informed
and assertive. Imagine how it is for people with poor health literacy,
cognitive impairment, ESL, acute illness, pain… I didn't realise just how hard it is to say what you're feeling, to ask the questions that you really want answered, but don't have the courage to speak. I can't tell you how many times I have felt frustrated because I didn't say exactly how I was feeling, or asked the questions that were bothering me. We're so used to being polite and answering the question "how are you?" with the socially correct "fine, thanks." It's only rarely that people say that they feel awful - I sometimes corrected myself and said I felt like crap, but that invites a longer interaction, and as a patient, you're aware of the demands on clinicians time from having other patients and administrative duties, you don't want to waste their time on you. But of course, patients are the reason why clinicians are there, and they won't get the best possible care if they don't have the chance to say how they really feel.

I don't think there's one answer to the problem - perhaps one solution
would be to sit beside the hospitalised patient, rather than looking down
at them, and asking them how they really feel, what they're
experiencing, and if they have any questions or concerns that haven't
been addressed yet. And asking the same questions for all our patients. Our
efficiency and expertise and need to remain dispassionate and
objective with our patients can inadvertently create distance between
us and the patients we are trying to help. Maybe we need to remember
to break down that barrier with every patient we see, to create a
bridge that allows them to convey their fears, hopes, and questions,
so that we can inform and reassure them from their space as a patient,
not ours as clinicians who have seen it many times before. Simple things like sitting on the bed or at the bedside, making prolonged - not cursory - eye contact, can signal to the patient that you have the time to talk to them, and are willing to hear what they have to say. Even appropriate physical contact can make the interaction more human and less impersonal to patients, particularly inpatients, whose bodies are regularly treated as impersonal objects to be probed with thermometers, pricked with needles, and compressed for blood pressure readings. I remember my anxiety literally falling away when my neurosurgeon sat on my bed and put his hand on my shin, the gesture was so reassuring, even though what he had to say wasn't the best: "you had a grade IV glioma. It can't be cured, but it can be treated." 
Many clinicians  are probably doing some of these things already - I thought I was, but being a patient
was a big wake-up call to realise all the things I could have done better. Like sitting down at the bedside every time, and gently touching someone's hand - I remember some patients holding my hand in theirs if I did that, and when I was an inpatient, I would sometimes reach out to hold a nurse's hand - I felt like a prisoner trapped in a dysfunctional body, and craved some human contact that didn't involve   instruments of any sort. 

I feel like these resources from the Cleveland Clinic cover many of the things I wanted to say at the conference, and more - so if I share them when I give my presentation, it will allow me to focus on any unique insights or experiences that might be left for me - like what it's like to be a neuropsychologist who had a brain tumour, how damned frightening it was to see that initial scan, and how ecstatic I was to get through two craniotomies with life, cognition, and sense of humour intact. I was looking at the photos taken around that time, one year ago (September 4th to 14th, 2013), and it was wonderful to be reminded of how happy we were, once the surgical treatment was over. The combined chemo and radiotherapy was rather torrid, as was the resulting pancytopenia and cancer-related fatigue, and all the other dramas I've experienced, but I've been feeling full of energy these past few weeks, and the bad times seem like a distant memory.

I must walk Ginny and hang out the laundry before the boys get home. I hope you're all having a wonderful Spring day.