Category: Reflective

Real time melancholy

A friend observed that my post-surgery posts have a more vulnerable tone to those I made pre-surgery. She’s right, of course, although this was hard to hear because like most people, I associate vulnerability with weakness/not coping. I think they were like that because I was in shock and denial. Since reality has crashed in, I’ve felt way more exposed. But another friend told me “you are a wonderful example of Brene Brown’s “power of vulnerability” in action!” This encouraged me to revisit Brown’s TED talk (nearly 1.5m views), after which I felt better about my vulnerability which is just as well because I’ve been feeling it to the nth degree.

One reason for this is that medically, I’m at an impasse and who likes residing there? Up until now, most decisions relating to treatment have been easy to make and I’ve not regretted any of them. Because of the non-invasive nature of my cancer, and complications relating to reconstructions on radiated skin, follow up treatment (namely radiotherapy) typically does not occur for women with DCIS who’ve had mastectomies. But I believe in my case there are a number of factors which increase the risk of a recurrence and so radiotherapy would be worthwhile. The quality of resources you can find online are amazing (and shit scary) and my reading of them is there’s a 50% chance if my cancer were to return, it would be invasive. I don’t feel comfortable waiting around for that to happen, so I’ve got a referral to see a radiation oncologist and am going to state my case. Emphatically. And, of course, listen to what they have to say. For more about the medical side, you can read my post, and a dizzying array of jargon, in the world’s largest breast cancer forum.

So that’s the short answer as to why I’m not great company at the moment, and the one I share when people ask (with their head cocked to the side) ‘how are you?’ I so don’t want to invite people to take a look at the emotional debris. That landscape is just scary crazy right now. I am mad as a bloody cut snake. I feel so very angry for all the reasons cited here and I am deeply ashamed to admit I’ve been resentful of other’s health, too. How come that fat man’s okay and I’m not? How has my neighbour managed to get to twice my age with only minor problems? I’ve even double dipped into my own misery banks with thoughts like: How come not only do most of my peers enjoy good health, their parents do too? What a revolting behaviour, but I’d be lying if I said I hadn’t felt it often lately.

What’s more I’m totally inaccessible to fixers at the moment, which makes me even more difficult to be around. I am surrounded by, and yet wholly unreceptive to positive talk about the future, because all I can see is rubble. I badly feel the need to stand amongst this, and respect the extent of the devastation rather than be encouraged to survey the architect’s new drawings. That will come, I am sure, but right here and now, I need to, and fucking well deserve to grieve. I had cancer. I was amputated. It is a real loss.

But my present, cynical view of our ‘get well soon’ culture is that bad times don’t get given any airtime or oxygen. They are regarded as anomalies. I feel myself being chivvied back to ‘normal’, where life is sunny and optimistic and uncomplicated, and I don’t care for it. I do have ears, though, for people who’ve had cancer. Or a long spell in Miseryland. But really, I need to stay in the dark and carry my weight alone, and just be sad until further notice. My friend Sue describes it like this:

People want the Julia Roberts movie version of things. The plucky young woman, facing illness with wit and bravery, inspiring others along the way, looking beautiful if a little wan in cashmere whilst they do it and going onto write a bestselling book along the way. They want things to come of bad things in the instant. And I hope that movie happens for you. And it likely will, or at least part of it. But no-one wants to really take on board the bit that the movie skims over that involves long-shots of Julia struggling as the seasons change before finally she is running along the beach. That is not a movie people want to watch unless they are Swedish.

This brought a smile for many reasons, one of which was it brought to mind the Team America montage song:

Back in real time, I described how fearful I was of my emotional state to a friend who’s a counsellor. I am so worried that I’ll sink into a depressive state and drag my family with me and haven’t they been through enough? Catie assures me that grief is quite different to depression and I can expect my feelings to fade over time. In a message to thank her I said “I am still in the thick of it, but I can see a tiny light in the far off distance that I’m inching my way towards.”

That evening, serendipity struck when Sue’s quote of the day was:

There is light and there is darkness. There is always a bit of light. Stay with this light, just with that little bit. Don’t look for a bigger one. Stay with what you’ve got. It’ll grow. Stay with the small light. Very important. Stay with it. Don’t stay with what you haven’t got. Light is light.

For the first time in many days I felt encouraged and not irritated by this kind of talk. The non-miserable part of me bubbles up and takes a fancy to this quote’s quiet, determined tone.

I don’t want to be shoved towards the light. But I will get there.

Because of you

I will regard my chest and see a dressmaker’s doll, with stitches I don’t care for and contours I don’t recognise.

I will second guess, odds assess, and throw the book.

I will lie on my back and have saline injected into me via a terrifying syringe. I will grip the nurse’s hand and fill my ears with tears. It’s because it doesn’t hurt, that it hurts.

I will regularly reach into my bag of fucks to give, and find it entirely empty.

I will look for strength in vulnerability and sometimes I’ll find it. More typically, I’ll find more vulnerability.

I will dig deep physically, emotionally, mentally and spiritually.

I will see my flexibility unravel, my biceps unsculpt. My toes can’t be touched and I can’t raise my arms.

I will spiral down from optimist to cynic, I will cheerlead and sneer.

I will feel bored and dismayed by the amount of real estate you occupy in my head.

I will make some people advance and others retreat. Some surprise hug me, others cross the street.

I will write and cry, write and cry.

I will survey mental rubble and face a mammoth rebuild effort.

I can do it all, and see a way out of it ALL. But I am broken forever and completely and surely beyond repair by this fact: every time I see my daughters’ tiny naked bodies, I will wonder.

Strange love

Let’s face it, for most of our lives we inhabit a middle ground, characterised by routine and its attendant minutiae. There’s coffee on take off, wine on landing and fretting over what’s for dinner in between.

If cancer has taught me anything, it’s that at the edges, things get really interesting. Yes, you are confronted, challenged, exposed and saddened, but this opens the door for comfort, reward, protection and love.

Today, a lady called Amy called by. She, too, has three children, the eldest of whom is at school with Amy. She and I have met two or three times. This is what she brought:

Strawberry muffins, bolognese sauce, pasta and a lovely little cactus.

I can’t even begin to list the number of kindnesses that have been shown to me in the last six weeks. But this gesture in particular really got to me. That she is almost a stranger makes her generosity all the more poignant and is, I think, a truly articulate expression of how tragedy unites.

I didn’t get to thank Amy in person because I was on the phone with Jane, a Breast Care nurse. These specially trained nurses work as case co-ordinators and patient advocates, plus they participate in multi-disciplinary panels, where non-straightforward cases are reviewed by a range of experts. I met a Breast Care nurse in hospital but was too arrogant to pay her much heed. I left the big pile of literature in the hospital. My attitude was “I don’t have cancer anymore. I don’t need you.” Then my pathology with its lousy margins comes back and with tail between my legs, I scurried to get back in touch.

I was seeking Jane’s advice on how to access a radiation oncologist to explore whether further treatment is advisable. Also, because I’m at real sixes and sevens on this decision I asked her view on whether she thought it was necessary. Her response was “I can hear you’ve got little kids in the background. I totally understand your need to do all you can to get fully well.”

It’s not often the kids get mentioned. But when they do… man, it’s Kryptonite, obviously.

Then I get off the phone to find this basket.

I’ve not cried since returning from hospital. But on spying that? The taste of strawberry muffins with tears is quite something.

Woo! hoo?

So I got the results from the pathology today and heard lots of positive news. My lymphs are clear, which means nothing has spread, and there was no invasive cancer (‘microinvasions’) in the affected breast. There was no sign of anything troubling in my right breast.

But.

When they took the breast tissue and spread it out they discovered the ‘margins’ namely the space between the cancer and the sample were very narrow indeed, less than 0.1mm, which means I am at a higher risk of a recurrence on my chest wall, for instance. Dr. Leong doesn’t believe follow up radiotherapy is required, but is going to take my case to the review panel to check.

The DCIS was very long – 9.5cm. Given the mammogram & ultrasound estimated 3cm and the MRI 5cm, this goes to show how the best imaging can only tell you part of the picture.

A positive thing this demonstrates quite emphatically is that a mastectomy was definitely the best, in fact the only choice in my case. If I’d have gone for a lumpectomy, they would have had to reoperate. So that’s a relief.

There is masses to be grateful for. How much longer before it became invasive? How much more concerning would the lousy margins be if invasive cancer were detected? And some people’s results show no margins whatsoever.

Also, is the story as bad as all that? I agree with Robert that there could well be an element of arse covering:

I hate how specialists so often leave the ‘small chance’ language to linger. I sometimes wander if it’s a ‘cover my arse’ strategy due to fear of litigation. I think we’re all ‘ones to watch’ these days, there appear so many things out to get us! Like sharks in the harbour – make the water cleaner, have more pleasure cruisers and what do you get? More shark sightings. Not necessarily more sharks.

Am I disappointed that the all clear isn’t clearer? Yes. I had hoped such comprehensive treatment would make the likelihood of a recurrence miniscule. It is still pretty small, though.

Plus who amongst us can hope for a life free of worry? I know my worry list today is a good deal shorter than it was yesterday. When I feed Theo tonight, for example, will I contemplate whether I’ll still be there when he’s in secondary school, like I did last night? No. I am going to be there, for sure.

There is still plenty to celebrate. Plenty.

Cheers!

Language matters

I have been thinking about the words and phrases used to describe cancer and a lot of it is very aggressive. Including the word ‘aggressive’. Here are some other words: fighting, brave, survivor, battle, win, remission, beat, victim, invasive, coping.

Don’t get me wrong, I am no fan of cancer and I’m not trying to stick up for it, but I really believe that the way I, and you, think about this, is going to make a big difference to my getting better quicker.

The slightly twee ‘little c’ and ‘unwelcome guest’ language as well as the about page where my condition does not dominate are my attempts to challenge the traditional mindset. Here are some other repositioning exercises (I’d welcome contributions from you too):

“I’m going to get through this” instead of “I’m going to fight/beat this”

“I’m a cancer-dodger” instead of “I’m a cancer survivor”

“I’m better now” or “I’m cured” instead of “I’m in remission”

This last point brings to mind a talk I saw by Ellen Langer, a doctor who I saw speak at last year’s Happiness and its Causes conference.  As well as conducting  a fascinating experiment on a bunch of 80 year old men, she also published a study which asked breast-cancer survivors whether they considered themselves in remission or cured. The “cured” group reported better general health, more energy, less pain and less depression. Langer concludes “[T]he extremely significant results of this study warrant further research and a possible rethinking of how to instruct breast cancer survivors to envision their relationship with the illness.”

I accidentally came across some research that supports this whilst searching for ‘regret breast reconstruction.’

A tendency to use coping strategies characterized by helpless/hopelessness and anxious preoccupation, rather than fighting spirit, were highly predictive of distress.

On a related note, my lovely friend and colleague Jayne has offered some practical advice for those who are feeling helpless in the face of my situation. She says “It’s not easy for people to banish fear and anxiety without replacing it with something more constructive. They get sucked into the drama and don’t know how to get out of it, and of course, it’s quite contagious (like all dramas are).”

Here’s her ingenious solution:

You might like to try telling those people (all of us actually) that there IS something they can do: ‘Spend a few minutes a day seeing me strong and seeing me healing and recovering easily and quickly. If you could do that every time you think of me, that would be great. There might be some other stuff you can help with down the track too and I will ask, but right now, helping me stay positive is really important and I’d be really grateful.’

Marvellous advice!

It’s about staying in control as much as possible in the face of lots of uncertainty. I can best sum it up like this:  while I have cancer, it doesn’t have me. No siree. Not by a long, long chalk.