Go Go Go

I'm doing that thing again. The busy busy busy run run run thing.

I don't remember if I did it much before I got cancer, but I certainly can't seem to get away from it now.

I am working hard when I am at work - it is busy season in GPland and there is no way around that. 
I am working hard when I am at home - the red carpet on the stairs does not clean itself, it seems. 
I am frantically trying to ensure that enough people come to the conference I am organising that it feels like a proper success, not just a job done (I really wish I hadn't watched that Fyre Festival documentary).

There is always a point where my body reacts physically to the mental overload and I think oops I've pushed it too hard this time. Pains in the head, pains in the stomach, pains in the chest. But then they pass, and I find my mind wandering off down the dark alleyways of What Makes You Think You'll Survive When So Many Don't, and I scuttle back to the pandemonium of ordering nametags and counting seats and emailing people I barely know to ask for help. It's safer for my brain to be bursting at the seams with the here and now stuff and ignoring the future altogether.

I like the busy-ness and I am dreading the come-down. 

But I would still very much like lots of people to come to my conference!

www.wimin.ie/conference

Strength and Dignity

The following post has been published in the 7/2/2019 edition of the Medical Independent.

I have started to give tutorials to our Final Meds again. I had stopped when the chemo frazzled my little brain cells to the point where remembering my own name was sometimes a struggle. But now I feel I can bestow the unsuspecting students with my vast knowledge, as long as I stick to just one tutorial per month, and with the scintillating topic of Me and My Illness.

I use my experience to illustrate a few teaching points, like breaking bad news, false assumptions about cancer and its treatment, and self-care. On this last point, I always urge them to ensure they have their own GP and to avoid treating themselves or their relatives once the magic medical council registration number is attached to their name. 

Sometimes they ask me about how my own bad news was broken to me, or about my own GP. The are curious to know if the SPIKES model was used (which seems to me to be a particularly inappropriate mnemonic).

This has been the most difficult part of these tutorials for me, much more difficult than describing the pain or misery of cancer and its treatment. 

It is difficult because my GP had to give me the news of my devastating diagnosis over the phone, when the radiologist phoned her late one Thursday evening to say that my MRI showed multiple liver metastases with an unknown primary. She knew that I knew what this meant. When I saw her number coming up on the phone I knew it was probably serious, but when she told me to sit down before she said anything else my head started spinning and my mouth went dry. She told me about the mets, then she told me to be at the hospital at 8:30 the next morning and the radiologist would meet me there. The oncologist was already lined up too, and perhaps a surgeon as well. She told me she would phone me back in half an hour, once I had told my husband, and she said she would talk to him too. 

As I was about to hang up I asked one more question - “are we really having this conversation?” She just said, yes. This is really happening. 

It was nearly a year later before I was able to fully understand how difficult that whole experience must have been for her. In the few days before I had had the MRI, we both knew that my liver function tests had suddenly gone up dramatically and that something was probably fairly amiss. But neither of us was prepared for what was to come. I have no idea how she was able to pick up the phone to me that afternoon, knowing that what she was about to say would be so life-changing, and possibly life-ending. She had obviously been to a lot of trouble contacting various hospital consultants before she even contacted me, so that a smooth plan was in place before I could even begin to think about what the next steps should be. 

She helped me through the excruciating uncertainty of the next few months. I would go to her with aches and pains which to me meant certain imminent death, and she would calmly and firmly diagnose something much less dramatic. She was always knew the right thing to say. 

I brought her a bottle of champagne for Christmas two years after my diagnosis. She wasn’t able to drink it, as she had started to have difficulty swallowing in the previous weeks. She told me some of her symptoms, and we both came up with non-life-threatening differentials, just as we had done when my original liver ultrasound was a bit iffy. And once again, our hoping-against-hope proved pointless, when she was finally diagnosed with motor neurone disease. 

Her speech started failing, so we communicated electronically. We knew each other so well that we didn’t really need to say that much anyway. One hand started getting weaker, but she was still able to take blood from my two-year-old whose growth was faltering, and the injection she gave me in my right shoulder saved me a trip to the orthopaedic surgeon. We had email chats about the pros and cons of various life assurance policies. 

Her funeral was without doubt the most beautiful and most agonising experience of my life so far. It was an almost exact replica of the funeral I have already planned for myself (except mine would be much more about Me Me Me, and hers was all about everyone else). Her daughter described her as never having a bad word to say about anyone. I know that it would be hard for someone to say the same about me, but I vowed to myself at that moment that I would try my best to emulate her. She was a truly amazing person and I will never forget her. 

RIP Dr Orla Batt.   

Dot Dot Dot

I'm pretty sure I am right, most of the time. 

I have been thinking about this recently, and I have come to two conclusions. 
Either everyone in the world thinks this way too, in which case I must be wrong, or I am one of a few people who think this and (as long they all agree with me) we must all be right. 

But the people who shout very loudly about being right seem to be the ones that are most likely to be wrong.

A conundrum. 

I feel strongly about things, and it distresses me when others don't. I don't mind when people think differently from me, as long as they have put some effort into actually thinking. It's when people don't think at all about the issues that fire me up that I assume that they are wrong, neglectful, not participating in society, not making their mark. 

I was listening to the Slow Burn podcast, and discovered Mae Brussell, who was a radio host in the 1970s with a deep passion for a good conspiracy theory (any conspiracy theory). Apparently she read eight newspapers a day. Her motivation for digging so deep into the stories of the day was that she felt a responsibility towards her five children, not to just sit back and let the world wash over her, and accept the perceived wisdoms, and putter along as a backseat passenger. She wanted to know what was going on, especially when she felt she wasn't being told the truth by the People Who Know Stuff. 

I do love a newspaper, but I doubt I could make my way through eight of them a day. Scrolling through Twitter, though. That I can do. And I like to think (in my Always-Rightness) that I only fill my brain with Important Stuff, I only follow Interesting People, I only click on Learned Things (and not bait). I tell myself that I am expanding my horizons and doing my civic duty, widening my knowledge. Of course all I am really doing is reinforcing my own long-held opinions, turning my core beliefs into iron ore, patting myself on the back for being so Right All The Time.

The discomfort we feel when we are confronted with truths we don't want to accept is very real. Visceral. We (I) don't like the feeling of doubt creeping in - what if everything we have believed to be unassailably true is in fact just something someone once told us, that we never even thought to question?

It is infinitely easier to stick to our guns, close our ears, cover our eyes and three-monkey our way through life. Even if we did dramatically change our minds about something, after carefully listening to a person who we would usually ignore or mock, it is unlikely that we are going to truly transform our general outlook on life. In fact, if we did do a complete moral or cognitive u-turn, our integrity would rightly be called into question.

So how do we open ourselves to new possibilities, without becoming embarrassingly flippant in our attitudes and opinions?

It all comes back to opening our ears, and trying new things, and embracing challenges. 

I am ridiculously excited to have been asked to participate in this year's DotMD festival in Galway in September. To be included in such a jaw-dropping line-up of writers, thinkers and doers is both humbling and ego-boosting at the same time. More importantly for me though, is the opportunity to once again open my ears and eyes to a wider view, a bigger picture, and to experience the thrill that comes from brushing off the cobwebs in the corners of my mind. 

Come along, you'll enjoy it. 

You know I'm right.