Fishing for Sympathy

I was in a shop last week, talking to a woman I had never met before, buying some sheets. I can’t even think of a reason why I said what I said. I’m pretty sure the whole conversation started with her asking, “Can I help you?”  There was a bit of the usual chat you have in a sheet shop. Nothing earth shattering. Then I heard these words come out of my mouth, “As you can probably tell, I’ve had a double mastectomy.”

The shop assistant looked surprised. “Oh really,” she said, and proceeded to tell me about a friend with breast cancer.

It’s not the first time I’ve done this. It’s probably about the third. It’s left me wondering why I do it at all. Why tell people that have no reason to know (and probably no interest) that I had breast cancer? It’s not like that makes me particularly unusual or special. As my daughter observed recently, it seems everyone has either had breast cancer or knows someone whose had breast cancer.

I suspect that, in my case at least, it’s about letting go of feeling so special. I read a comment by someone else with breast cancer about a year ago. “You will never feel more loved.” That phrase was like the sun coming up. Yes, I was sick and weak and frightened but I was also surrounded by people that made me their top priority. I could lay on the couch all day (and many days this was a necessity rather than a choice) and nobody would question my motives. Instead of doing all of my usual chores I could ask other people to do them for me.

During that period of time when I obviously had cancer and my entire body was hairless, I noticed how much nicer people were to me. People I had never met took particular care to smile, to be kinder, to go just a little bit out of their way for me. It’s interesting that I probably felt worse during radiation than I did during chemo, but by then I had short hair.

I never want to have cancer again. Never. But the big surprise about having it is how special I’ve felt since June 2012 when I was diagnosed.

Cancer has also been what I think of as a whole of life detox. I’ve shed all sorts of things, emotional and physical. I have lost friends that couldn’t cope or chose not to get involved. I have gained friends that I met along the way. I have changed my diet, increased my exercise, lost 12 kilos so far and massively reduced my alcohol consumption to an occasional glass of organic wine or two on weekends when we socialise. I used to have three or four glasses (about half a bottle) just about every night.

When you sit quietly holding hands with death the reality of your own, tiny, temporary life finally sinks in. It brings about a comprehensive shift in the way you think about just about everything. Priorities. They’re different now. I care less about things and more about relationships. I realise that, for me, connection, compassion, love and helping others are what really matter. I don’t feel guilty about spending time doing things I enjoy. I used to. I always had a long list of things I SHOULD be doing and I gave that priority over things I wanted to do. Not any more.

I am much less angry than I used to be, and much less inclined to escalate to anger. I am calmer and happier and kinder. I am mindful that anyone could be in the middle of what my family has just been through. You can’t tell by looking.

We are all temporary.

I still like my home clean and tidy, things repaired, gardens weeded and lawns mown. I just make sure that the things I love to do come first rather than second. Curiously the chores still get done. I get around to them after I’ve done the important stuff. Why did it take me so long to learn this?

My husband has finally been able to exhale. He’s been so worried for me. I insisted that he keep up his volunteering with the fire brigade and his involvement with two bands while I was sick. His employer let him shift to part time work during my treatment so he could drive me to chemotherapy. He’s back to full time work now. I miss the level of care and attention I got when I was sick. People really do realise how much they love you (or sadly for some, how much they don’t) when you get seriously ill. I don’t ever want to put him through that again, but I do miss that level of attention.

I don’t miss the distress that all of this has caused my beautiful daughter. Not at all. Not one bit. I can’t think of anything positive that it’s done for our relationship. We were already close. I am very glad to be able to show her how healthy I can be.

So maybe this is why I seem to randomly blurt out my medical history. I suspect I’m fishing for sympathy. I want strangers to be impressed with how well I look. I want them to contemplate what I’ve been through and give me credit for it all. Why? People get sick all the time. There’s nothing special about me.

And I think that’s the heart of it right there. Being special.

Cancer is horrible. Treatment is a blunt object with life threatening consequences and long term side effects. Bits of you get chopped off and thrown away. Or banked or…..I actually have no idea where my breasts are! Anyway…..cancer is horrible, but while you’re being treated for it you do feel pretty special. Well I did. Maybe this is just me.

I think that part of recovering from cancer is letting go of ‘cancer patient’ as an identity. It’s about getting back to being ‘Meg’. You really can’t tell that I’ve had a double mastectomy. I could just be flat chested. My hair is now past my shoulders and my eyebrows and eyelashes have regrown. If you met me tomorrow you’d never know.

I’m 53 years old. I’ve done a lot of things in my life so far, including 20 years worth of stories from my policing career, my commitment to being a really good parent, a short list of things I’ve learned to be good at simply for the pleasure of it, and all of the assorted bits and pieces that make up a life. Why should this disease be the most important thing about me? Why should I feel compelled to share this particular piece of medical history with anyone. I am so much more than just ‘a cancer survivor’.

I had dinner out with a friend last weekend. There was a woman at another table with a tell-tale cotton cap on her head and drawn in eyebrows. I thought to myself, “It’s her turn now.”

I need to return to being ‘normal’ (just as soon as I figure out what that is) or at the very least to stop making everything about cancer. I need to let go of it being who I am and relegate it to something that I once experienced. I don’t want to lose everything I’ve discovered and all of the changes I’ve made and I plan to keep writing about all of that. I do want to move on from a place where cancer is a big part of my day to day life. It deserves to be a footnote.

I am well.

I’m still going to be involved in relevant charities, but I was before I had cancer so that’s nothing new. I’m also going to keep sharing what I know and what I learn with other people going through something similar. The feedback I’ve had from this blog has been inspirational. It’s helped people. I hope to keep doing that.

So now it’s your turn. If you’re reading this and you’re going through treatment, or you recently finished treatment, and you’d like to ask me a question then please ask it here and I’ll do what I can to answer it. If you ask me something that I don’t know the answer to I’ll try to find out, or find out who you can ask. If I don’t know something I’ll be honest about that too.

I understand what you’re going through because I was once there too. I’ve benefited from the care and love of so many people. Now it’s your turn. How can I help you?

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Six Months Post Mastectomy

WARNING: This post contains photos of my mastectomy scars. Skip this one if you’re likely to find that upsetting.

It’s the eighth of February today. That’s six months since my mastectomy.

Anniversaries take on a new significance when you’ve had triple negative breast cancer because our highest risk of recurrence is within the first three years. By the end of five years our risk has dropped to the same as everyone that’s never had breast cancer. It’s one of the few consolations for having a form of breast cancer that’s typically described as ‘more aggressive and with a worse prognosis than other breast cancers’.

I thought you might like to know how I’m travelling.

In a word, brilliantly!

My wounds are almost (but not quite) fully healed. I’ve been surprised by how long it takes. There’s a period of rapid healing immediately after surgery, as I expected, but then there is also a long, slow healing where the scar tissue gradually loosens up and improves in both appearance and sensitivity.

I still get strange electrical pings from time to time, but nowhere near as often as I used to. The tightness around my chest had greatly improved, particularly across my back. Following surgery I had a strange stabbing pain in the centre of my back when my bra fastening used to be. If I rolled my shoulders forward it was worse. That’s completely gone now. So is the mysterious stabbing pain on the outside of my upper arm near the shoulder. My surgeon, Kylie, described both as ‘referred pain’ and I’m happy to be over it.

How to describe the sensation across my chest? I think if you took something like a clay mask,  spread it over your chest and let it dry you’d be approximating the sensation. It’s a little tight, but not painful. Kylie warned me that my chest would get tighter over time and then it would ease. I’m at the happy end of the easing process with hopefully a little way to go.

As the skin has loosened away from the muscle it’s become more comfortable. You can see from the photos that there’s now a little bit of a droopy bit, particularly on the right hand side. I joke with my husband that my breasts are growing back. Actually, it’s a good thing because I now look less like a mastectomy patient and more like a naturally flat chested woman. I’m doing some hand weights to build up my pectoral muscles and to give me a bit more of a natural shape.

Having said that, I’m now completely comfortable with my flat chest. I’ve had a lot of fun replacing most of my old wardrobe. My two favourite ‘looks’ are a beautifully patterned cotton shirt over a singlet with long pants, or one of those box shaped dresses that sits just above the knee. I didn’t feel comfortable wearing shorter skirts before my surgery but now I enjoy putting my ‘yoga legs’ (as Graham calls them) on display. I’m accessorising with beautiful scarves and long necklaces which now sit beautifully thanks to my dolphin chest.

The only pain I have is from arthritis in my hips and shoulders (which I would have had anyway) and the peripheral neuropathy in my hands. They are very sore when I first wake up but improve quickly with my morning yoga.

My recent followup appointment was with my radiation oncologist, Andrew. He reminded me that I shouldn’t give up on the peripheral neuropathy and that sometimes nerves take a very long time to regrow. He suggests waiting a decade before calling it quits. This is great news because Rachel, my oncologist, has warned me that whatever I had twelve months after chemotherapy I would probably be stuck with for the rest of my life. It’s not really a big deal either way. I can still type, obviously, and last week I finally returned to playing my cello.

It’s made me very happy to discover that in spite of the numbness in my fingers, the need to completely reposition my instrument and the poor playing that results from two years without practice, I can still read music and make a beautiful sound. The challenge now is to return to daily practice. Like so many things, the cello requires a regular small investment in order to reap returns.

Andrew and Rachel are in agreement about what we thought was recurrence. It’s likely that this was actually DCIS left behind after the first surgery rather than new cancer. Why does this matter? Well, there’s a huge difference between a bit of old cancer still growing away and a whole new outbreak of the disease, particularly in terms of my long term survival odds. Although I was initially shocked at the possibility that my surgeon had made a mistake I now consider it to be serendipity, a happy accident.

You see, what we know, thanks to Kylie’s ‘mistake’, is that the cancer I used to have was resistant to chemotherapy and radiation therapy. It is almost certain that I would have needed a mastectomy at some point. Having it when I did meant the tissue removed was free of cancer and that greatly contributes to my future survival. You don’t get better margins than ‘no sign of cancer in this tissue’. If Kylie had removed a bit more tissue in the first surgery I would still have potentially lethal breasts with no guarantee that we would have caught the recurrence before it had spread to vital organs. Everything has turned out for the best.

I know Kylie still beats herself up over leaving the clip and some of the tumour bed behind. I’m glad I’m not a doctor. They are human like the rest of us and that means that, sooner or later, they will make a mistake. It’s unavoidable. A world where it’s safe for them to acknowledge that and talk about it is a safer one for all of us. It’s not a metaphor when people say that doctors often bury their mistakes!

It’s an interesting thing to come face to face with your own mortality. Last night I lay in bed thinking about a new blog called ‘We are all dying’ or ‘live like you’re dying’ because I now believe that when you really understand this, all the way to your temporary bones, life becomes richer, more precious, more meaningful………if you let it!

It still sneaks up on me at odd moments. My husband and I will be watching something on the television and laughing or joking about it. I’ll suddenly feel overwhelmed by my love for him and all he’s done and been since I was diagnosed. One day we will both be gone. That makes being here so much more beautiful.

When we’re intimate I sometimes weep with the wave of emotion that floods me. He touches these scars as if they were precious. You’ll notice that the photos are the right way around for this post because I finally felt okay about asking him to photograph them rather than using a mirror and taking them myself. The photos still shock me. From this side of the scars it’s easy to forget. Graham has just adapted to incorporate this new version of my body. He’s so grateful that I survived. He loves me.

My daughter returned from Europe and we have two precious weeks before she returns to university. I want to follow her around and embrace her randomly. I am so proud of her. She could have walked away from her studies without anyone criticising her because, after all, her mother had cancer. But she stuck it out. Her marks dropped but she still managed to pass two of the hardest subjects of her degree. Because the last eighteen months for me have been about surviving I haven’t been able to support her as I would like to have done. Now I can.

Her physical and emotional health have suffered. She’s working on being well. It’s been a shock to her to contemplate a world without me in it and it shows. I wonder if she’s realised that, like me, she is also temporary. Maybe that’s not a concept you need to come to terms with in your twenties although I know from the many young breast cancer survivors I have met that there are plenty who do. I pray for a cure. I pray for a future where she doesn’t have to fear my genetic inheritance.

My six month anniversary present was news from the Mayo clinic in the USA. They think they might have a vaccine that prevents the recurrence of triple negative breast cancer. I want to put fifteen exclamation marks on that. I still cry with joy when I watch this:

http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

It’s too soon to call this a cure. They’re just starting trials and the trials may yet prove that the treatment doesn’t work, but hope is like rain in the dessert when you’ve had cancer.

So, as always, here’s the photos. This is what my body looks like after six months of healing and taking very good care of myself.

P1070195 P1070196
P1070194As you can see, the puckering to the left hand side is much better and I’m reasonably confident that this is going to keep improving. I’m seeing a massage therapist that specialises in oncology at least once a fortnight and sometimes more often than that. I highly recommend it. I’m also brushing my torso with my hands each night to help promote lymphatic drainage. The lymph system sits just under the skin so you really just pat yourself like you would a cat, with long strokes down the body. I can feel the lymph moving when I do this. It’s a mild tingling sensation. I’m hoping this helps me to avoid lymphedema, a common complication of cancer treatment.

The skin on the left hand side is also much better. This skin was damaged by radiation therapy and that’s why you can see such a marked difference between the two sides. You can also see the arc of a scar from my original breast conserving surgery above my mastectomy scar. I’ve been using macadamia or hemp oil, perfumed with essential oils, after my shower and that’s helped.

The question I get asked most often is “Will you be having reconstruction?”.  My answer is still “No”. I am very happy with my decision to do the best thing for my health and have the least amount of surgery possible. Even with all of the weight I’ve lost I still have a little bit of a belly. I’m very happy to have it sitting where it has always sat rather than having it surgically relocated to my chest, with all of the risks, pain and recovery time that would have involved. Just the thought of more than ten hours under anaesthetic was reason enough to avoid it but I’m also happy about not having any more scaring than was medically necessary.

Everyone makes their own decisions on reconstruction and, if you’ve decided to have it, then I sincerely hope you are as happy with your choice as I am with mine.

I’m still not inclined to wear ‘foobs’ (fake boobs). I don’t think there’s anything about my appearance that need ‘enhancing’. Of course, I’m also the kind of person whose happy with my prematurely grey hair, my glasses over contact lenses and my habit of saving makeup for very special occasions. There are some clothes that I know would look better with a bit of a mound. Perhaps, in time, I might have a look at something to go under evening wear but so far, so good.

Emotionally I’m feeling great. Thanks to Russ Harris and the ACT skills I’ve been practicing I now have an effective method for dealing with fear of recurrence. Losing 14 kilos since surgery (and only two of that was actually cut off me) has made me very happy but it’s really The Fast Diet that’s been a major contributor to my emotional well being. I am now in a healthy weight range because of a method that’s sustainable for the rest of my life. I can still enjoy great restaurants and the occasional take away without fear or guilt. The evidence on the benefits of this way of eating and the implications for those of us seeking to avoid cancer continue to mount. I am certain that I am doing the right thing for myself, my body and my family.

I know it’s still possible that the cancer could come back. Cancer is like that. But I don’t dwell on it. I enjoy my life. No, it’s more than that. I CHERISH my life, because I finally understand how precious it is.

More on Fasting

Thanks so much to everyone for the positive comments and feedback about my last post on fasting and The Fast Diet.

Today, this piece of research turned up in my Facebook feed.

http://www.healthcanal.com/cancers/breast-cancer/59717-study-links-deficiency-of-cellular-housekeeping-gene-with-aggressive-forms-of-breast-cancer.html

It explains that they’ve discovered a cellular deficiency in people with triple negative breast cancer. It seems our bodies aren’t as good at ‘autophagy’ (the natural process of cell death) as other people.

Given that fasting promotes cell recycling I think this research gives me one more piece of evidence in favour of this way of eating.

It also strikes me that my fibromyalgia might be a consequence of the same phenomenon; it’s known that the mitochondria (essentially the engine room of the cell) are slow functioning in fibromyalgia patients. It’s just possible that the two are related. Certainly it’s worth further research. I wonder how many triple negative patients are also fibromyalgia patients.

Some people have asked me about ‘starvation mode’ and the popular advice regarding dieting that fasting will cause your body to ‘hold on to fat’ because starving will trigger a defence mechanism that makes it difficult to lose weight. I’ve found lots of places that offer this advice but not one piece of research. Here’s an article which is pretty typical of the kind of thing we’ve all been told for years (and it’s apparently just plain wrong).

http://www.weightlossresources.co.uk/calories/burning_calories/starvation.htm

It would appear that this myth originates with something known as ‘The Minnesota Study’ or ‘The Minnesota Starvation Project’. The study dates from 1944 and involved 36 men being put on a diet that was 50% of the recommended calorie/kilojoule intake. They were also required to walk 22 miles each week. It was observed that as they lost weight (lots and lots of weight) their metabolisms slowed down.

What’s important about this study is that there is no evidence that this slowing of their metabolism caused them to stop losing weight. It’s certainly nonsense to suggest that eating less might have caused them to gain weight. The body just doesn’t work that way.

And yet I can remember being told time and time again that if I wanted to lose weight I would need to make sure I ate regular meals and had some snacks in between to ‘maintain my metabolic rate’. I was first introduced to this notion about a decade ago when I went through the Weight Watchers program. Interestingly, even Weight Watchers now recognise that it’s a myth:

http://www.weightwatchers.com/util/art/index_art.aspx?tabnum=1&art_id=35501

When I went through Weight Watchers I was told to never skip breakfast and to have ‘healthy snacks’ between meals or I would put my body into ‘starvation mode’.

Just to be clear, this is nonsense. There is no scientific basis for these claims and if fear of ‘starvation mode’ is the reason you don’t want to try fasting then fear no more.

I would add that the main benefit of this style of eating is that I really can see myself sustaining it for the rest of my life. Once I’m at my goal weight I can cut down to one fast day every week. Although the first few weeks were difficult I now find fasting both easy and pleasurable. I feel somehow sharper, more alert and I have more energy on a fast day.

Weight Watchers, on the other hand, made me miserable. Everything needed to be counted, checked, measured and weighed. The last five kilos were particularly torturous as the amount of food I was ‘allowed’ became less and less. I diligently stuck to my maintenance program once I’d achieved my goal weight. I became a ‘lifetime member’ and they gave me a cheap charm to hang on my handbag.

I realised very quickly that this was no way to live. I was anxious about gaining weight again. I was resentful of all the restrictions. Over time the weight came back on.

The big difference with The Fast Diet is that for five days a week I eat what ever I want. You would think that I’d use it as an excuse the empty a packet of tim tams but like most people eating this way I don’t feel any desire to binge.

My daughter started yesterday and made a really good observation; when you’re hungry all food looks delicious, and if you don’t care whether you have a delicious biscuit or a delicious apple then you may as well have the apple.

I agree with her. We’ve always been a family that enjoys a predominantly healthy diet. I also think that fasting makes you very conscious of the way you feel when you eat different kinds of food. I’ve discovered that anything with gluten makes me bloated and very sweet foods make me mildly nauseous. That’s a strong incentive to cut back on both.

Now having evidence that this way of eating might actually help to compensate for a genetic deficiency in my body that predisposes me to triple negative breast cancer gives me one very compelling reason to keep going.

I hope you’ll consider it too.

And just to round things off, here’s Michael Mosley’s take:

https://thefastdiet.co.uk/forums/topic/food-thought-fast-day-starvation-mode/