Here, Try My Shoes.

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This blog contains a lot of advice about coping with the treatment for cancer and living well after treatment. I often think that offering people advice is a bit like offering them your shoes. Someone tells you they need to walk from here to there (and sometimes they don’t even do that) and you say, “Here, try my shoes.” The problem is obvious. There’s a fair chance that my shoes won’t fit you. Even if they fit you, they might not be comfortable. Advice is a bit like that too.

When I consider whether or not to take someone’s advice it’s like deciding to try on their shoes. This is not a simple decision. From my perspective there are some shoes I know will never be comfortable. I am not, for example, going to try leech therapy to prevent cancer.

There are some shoes that look like they’ll fit me but don’t. For me this happened with radiation therapy. I did my research, heard all about the statistics, endured the embarrassment of having my breasts exposed to strangers day after day and the discomfort of skin damage and then my cancer came back anyway. Conclusion? The radiation did not ‘mop up’ any potentially cancerous cells as promised and I now have permanently weakened tissue and the risks that come with radiation treatment, including future heart trouble, leukaemia, and aggressive mutations to the cancer I’ve already had. Of course the cancer would almost certainly have come back without the radiation and then I would have kicked myself for not having it.

There are some shoes that look like I won’t like them but turn out to be brilliant. Recently I saw a television program about fasting and the research into its benefits. I’m someone whose previously dismissed fasting as too extreme, too radical and too much stress on my body. I was wrong. It turns out that fasting can trigger your body to clean up damaged cells and to improve your production of T cells, critical for a healthy immune system. This is important news for anyone trying to avoid cancer. Research has shown that all of us have potentially cancerous cells circulating the body all of the time. In those of us that develop tumour based cancer these cells have managed to trick the body into providing a blood supply so that the cells can multiply into tumours. Something that helps the body to clean up damaged cells is highly likely to help prevent the recurrence of cancer. I’m excited.

Most importantly, research into fasting has shown that it reduces the PKA Enzyme. Higher than average levels of this enzyme are present in people with cancer and it’s been linked to cell progression and tumour formation. As a side benefit, it’s also linked to ageing (not that I care any more, ever again, how old I look!).

Last week I fasted for two days. There’s a popular diet around at them moment that’s variously called ‘The Fast Diet’ or ‘The 5:2 diet” and the program I saw included an interview with Michael Mosely, one of the people that developed this concept. I really think they should call it a ‘calorie reduction’ diet rather than fasting, because it involves eating 500 calories on two days each week. That’s not the same thing as fasting. I tried 5:2 but for me it was more difficult than just eating nothing for two days. Eating something made me mildly obsessive about what I could include in my 500 calories. Eating nothing gave me a complete break from eating, preparing and thinking about food.

Over the course of the two days I drank plenty of water. On the first day I had two black coffees in the morning but I left these out on the second day. As a consequence I had a mild ‘where’s my caffeine’ headache on day two but otherwise I felt fine. I kept myself busy and distracted. I thought a lot less about food than I expected and while I did have moments of feeling like I wanted to eat I found they passed quickly if I just turned my attention to something else. In my mind, it sounded like this:

“Hmm. I feel like something to eat. Maybe an apple or some peanut butter on toast. Oh wait. I’m fasting. I’ll have a drink of water and find something to keep me busy.”

Interestingly, my hunger did not increase over the course of the two days. I did not become ravenous or distressed about the lack of food. It seemed that once my hunger reached it’s very mild peak it just stayed there and only invaded my thoughts intermittently. I was surprised at how easy I found it to go without food.

The proponents of fasting claim that it improves our cognitive function. They speculate that our ancestors, during times of hunger, would have needed to be more creative problem solvers to find food and so the absence of food improves our thinking. I managed to figure out a complex problem with a broken sliding door, to remove the door, repair it and replace it so there might be something in that.

I was hoping that fasting might have had an impact on my pain levels. I’ve still got nerve pain, particularly in my hands, as a consequence of chemotherapy. I’ve also got lower back pain, possibly from degenerative arthritis in my SI joint or another hang over from chemotherapy. Fasting didn’t seem to make much difference but I remembered my TENS machine and found it made a huge difference to my lower back pain. More creative problem solving, perhaps.

The most noticeable impact was on the duration and severity of my hot flushes. Chemotherapy induced menopause. Post surgically my hot flushes have ramped up again. I don’t find them particularly distressing because I certainly prefer them to menstruating and they mostly just involve the same feeling I get when I walk into summer sunshine. There’s a bit of a glow across the forehead and a down-to-the-bones warmth but I don’t have the panic that affects some women. For the whole two days of fasting I had two very mild events instead of six or so much stronger ones. Conclusion: If you struggle with hot flushes it might be worth trying a short fast. Of course, what works for me might not work for you. These are my shoes.

Meanwhile Graham’s trying the 5:2 diet and loving it.

If you’re interested in 5:2 there’s more information here:

http://thefastdiet.co.uk

Here’s a couple of interesting articles about fasting, one of them with good research references:

http://www.collective-evolution.com/2014/06/22/scientists-discover-that-fasting-triggers-stem-cell-regeneration-fights-cancer/

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

You might also like to google for more research into fasting.

If you’re about to start chemotherapy then you might want to talk to your doctor about fasting. Here’s just one of the pieces of research showing the potential for fasting either prior to or after chemotherapy to reduce some of the unwanted side effects. It’s also possible that fasting might improve the efficacy of chemotherapy which of course means that it might not, but so far it appears not to have any negative impact on chemotherapy and would, on that basis, be worth trying, particularly for those people plagued by extreme nausea.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815756/

But back to footwear. Sometimes, particularly in relation to cancer, I find myself being invited to wear the shoes of someone that’s losing their fight. I can understand anyone’s desire to share information and advice in the hope of helping other people. It’s the reason I blog. I also think the first rule of taking advice is to consider the situation of the person offering it. I would not, for example, take investment advice from someone that doesn’t invest, or health advice from someone who is unhealthy.

There’s a number of popular cancer related sources, including Facebook pages, blogs, web sites and web magazines that include some often radical advice from people with cancer. I’m sure it’s well meaning but when the author is advocating expensive and radical treatments that have failed to cure their cancer I’m going to be skeptical.

I’ve had quite a few people recommend Anna Kitson’s site at http://savingana.com

She also has a Facebook page.

Anna is now a regular contributor to Mamma Mia where she’s promoted as someone writing about what it’s like to die from stage four breast cancer.

Her site offers several pairs of very expensive and unusual looking shoes. Her recommendations include travelling to clinics (Kliniks) in Germany for treatment, taking expensive supplements, using hypothermia, sticking to a ketogenic diet, taking cannabis oil and considering some of the more radical alternative treatments. It’s possible that this advice is the reason she’s still alive eleven years after her diagnosis. Sadly, it’s also possible that none of it has made any difference to her health, although it’s surely had an impact on her bank balance.

It’s reasonable that she want you to walk a mile in her shoes, but keep in mind where those feet are headed.

I don’t have an easy formula for determining which advice to take and which to reject. ‘Trust your instincts’ is popular but terrible advice in my opinion. My instincts have often led me down darkened alleys to be beaten up by foreseeable consequences. I have distressingly seen ‘instincts’ cause people to reject mainstream medicine and to die cursing the alternative medicine practitioners. I’ve also seen some (but only a few) cases where rejecting mainstream medicine and implementing alternative methods resulted in a return to good health. The trouble with advising people to trust their instincts is that it invariably comes from people who, with the wisdom of hindsight, made a good choice. They seem to conveniently forget all of those times when their instincts helped them to make really bad decisions.

‘Trust science’ is also problematic because while I continue to be a fan of the double blind trial I keep three things in mind; firstly, a lot of research is funded by vested interests and there is a long history of this kind of influence having an impact on the integrity of any research; secondly, funding for research is limited and the ways that subjects are selected for research are often arbitrary which means a lot of potentially promising and beneficial treatments may not have research to support them; and thirdly, science is always evolving and changing which is both wonderful and frustrating. There’s no doubt that elements of the best possible cancer treatment you can get today will be obsolete at some time in the future, in some cases within a year.

Recently I’ve been researching diets in the hope of finding the best possible eating plan for avoiding recurrence. It’s interesting how many ‘sacred cows’ are being barbecued by the evidence. Low fat diets are bad for you, eggs will not raise your cholesterol and even lard (yes lard!) and butter might be new health foods!

When we look back at medical practices of a century ago, or even a decade ago, we can find much to criticise. This will be just as true of ‘modern medicine’ in a decades time, or with the wisdom that will come from a century of improvement. We don’t yet have a cure for cancer. A lot of the best available treatment comes with serious risks and side effects. Would you like bare feet or stilettoes to cross that fire pit?

I’ll keep learning and researching and sharing what I find. It’s likely that I’ll change shoes several times over the next year or so as I figure out what works for me. My aim is to prevent my cancer coming back. All advice comes with this caveat: We won’t know if any of my advice is worth taking for at least five years. It’s also worth remembering that we are all different and complex. What works for me might not work for you.

And as a final caution, I’m always very suspicious of anyone trying to sell me their shoes. It’s relatively easy to set up an impressive looking web site with what appears to be ‘scientific research’ and to market some new wonder product to cancer patients. There are possibly some well meaning people that are over-enthusiastic about something that shows potential and there are definitely plenty of people prepared to exploit anyone desperate for any hope of a cure. It’s always useful to ask ‘Who gains if I take this advice?’ particularly when large sums of money are involved.

Ultimately I’ll resort to gathering my own evidence, being open to what seems instinctively to be counter-intuitive, being prepared to learn and to change my mind and recognising that at some point, failing to make a decision could have worse consequences than choosing any of the reasonable options available to me.

So please, if you’d like to do so, try my shoes. But feel free to take them off again if they’re the least bit uncomfortable, and feel free to reject them completely if you can tell just by looking at them that they’re not for you.

 

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Why I’m Not Having Breast Reconstruction

TRIGGER WARNING: If you’ve had reconstruction you might not like this one. Please know that this is a post about my personal decision regarding my own body and it is not intended to cause offence or distress to anyone that has decided to go ahead with reconstructive surgery. I love lobster. My daughter can’t stand it. If you ask her she’ll describe it as revolting. That’s her experience and a legitimate expression of her opinion. I don’t take it personally or as an attack on my lobster eating. So it is with my views on reconstruction and any conflict with those that have been very happy with the results.

 

It’s one week since I found out I need a mastectomy. It feels like a month!

Last Wednesday when my surgeon explained that the pathology on the surgery I’d had the week before revealed invasive cancer, she followed with:

YOU WILL NEED A MASTECTOMY

(What? Did she just say mastectomy? That wasn’t even an option last week. What happened to “I’m almost certain it’s fat necrosis” which is what she said just before they put me under. Mastectomy? What? How is this even happening?)

While my brain was doing that, my surgeon was explaining that the multidisciplinary team were all in complete agreement. She then started explaining reconstruction options. It turns out that radiation makes it unlikely that implants will be successful. Given that my radiation was not successful in mopping up my cancer and that having it has also put me at risk of all of the complications associated with radiation, I’m not happy. She also told me that radiation means the mastectomy will possibly have some complications, including seromas (fluid building up under the skin) and slow healing.

It’s official; I would have been better off having the entire breast removed after chemotherapy.

Of course, we only know that with hindsight. This is one of the most frustrating things about cancer treatment. Every stage of treatment carries risks and complications. This particular course of treatment has been very successful for the majority of women that have had it. It was worth trying to save the breast. I’m not sorry to have tried.

My surgeon, Kylie, then went on to explain suitable reconstruction techniques. They involve taking skin and tissue from one part of my body and moving it to my chest. Kylie told me that she often works with a brilliant cosmetic surgeon that favours a DIEP flap method. Tissue is taken from my tummy and moved up to make two mounds on my chest. She’s happy to call in a favour and get me in to see this surgeon.

I was still in shock. I wondered if reconstruction at the same time as the mastectomy would help me cope. Kylie told me that if I was to have reconstruction I would probably spend the first week thinking it was a mistake “because everyone does at first” and that it would involve ten or eleven hours in surgery. I wondered if this would help me overcome the body issues associated with mastectomy and she replied that even those with reconstruction continue to have body issues. At the time I said this: “I think having something there would help me to avoid that shock people will feel when they see me without breasts.”

It occurs to me know that my mind went straight to worrying about the reaction of other people. Hmm.

I left her office close to tears, with an appointment to see the cosmetic surgeon two days later. I had to use the receptionist’s phone to call my daughter with the bad news. The first of what would be a week of tears leaked out while I made that call. The serious crying was shared with my husband when we left the practice.

I spent the next couple of days researching and thinking about reconstruction, but mostly just grieving. News like this deserves a lot of tears. There’s also the distress of friends and family to deal with. How could this happen? I’ve been looking so well. Treatment seemed to have gone so well. What went wrong? For a brief time I felt I’d failed them. They had all loved me so much and wanted me well so badly and now I had let everyone down. I felt guilty about the sadness and distress my condition was inflicting on those around me. Poor Mum went through three months of ultimately terminal cancer with Dad. My daughter arrived from Sydney and sobbed while I held her. I had no comforting, motherly things to say. All I could do was to cry along with her.

Graham held me while I cried. He told me that I had his complete support, whatever I decided. He told me, over and over again, that he loved me and that he would always love me. “We will both be very sad. It will be hard for a while. Then it will get better and it will become our new normal.” He didn’t cry with me, preferring to be my rock, but sometimes he’d walk into the room with his eyes red and wet and I knew he’d been grieving in his own way.

I was fairly sure I didn’t want a reconstruction. When I told Graham he said, “I think there’s an argument for having the least possible surgery, but I still think it’s worth keeping the appointment with the cosmetic surgeon. You can’t have too much information in this sort of situation.” Wise.

So two days later we drove for an hour and a half to see the cosmetic surgeon. Kylie had warned me that some patients found her manner hard to take, but that she was one of the finest surgeons in the country. I was forewarned, so what happened next didn’t shock me nearly as much as it might have done.

The cosmetic surgeon was another brilliant, petite woman with tiny hands. She and Kylie could be sisters. I noticed her bird-like manner and her tiny breasts. She asked me about my medical history. Was pleased that I’d given up smoking eight years ago. Pleased that I had a good level of fitness and that I was not a heavy drinker. She asked to physically examine me.

With my top off, she pointed to my healthy right breast and said, “So, how do you feel about this one?” I told her I was fond of it. It’s my breast. It’s part of my body. (Truth be told, I’m fond of the other one too, but she didn’t ask about that). “Well,” she said, “It wouldn’t pass the pencil test but you couldn’t hold a pencil case under it.”

Kylie had told me that you get one shot at a reconstruction and for that reason many people opt to do both breasts. I told the surgeon that if I went ahead with reconstruction I’d be having both done. She then took a look at my tummy. She seemed delighted. “Almost no stretch marks. Your skin is in good condition. Yes. I we could do a lovely job with this.”

I felt a wave of nausea. She was talking about cutting off my tummy and moving it to my chest. “They’ll be soft. They’ll be warm. We reconnect the blood supply but we can’t reconnect the nerves so you don’t have the same sensation, but they’ll feel natural.” She looks across at my husband. The colour has drained from his face. Even so, I’m flattered that I’m such a ‘good’ candidate. I imagine myself being one of the finest examples of her work.

With my clothes back on, she shows me some photos of other patients. They are impressive, but this procedure comes with a lot of scars. I try to imagine myself looking like one of these women. Would I feel like a patchwork quilt? Would the additional risks and pain be worth it?

She starts talking about a date for surgery, possibly next week. I tell her that I’m still making up my mind about reconstruction and then we have this conversation:

Surgeon: “Well why WOULDN’T you want a reconstruction?”

(Wow. Did she just say that? As if reconstruction is my only reasonable option? Okay. Stay calm. Resist the temptation to tell her to mind her own business. From her perspective this is a reasonable question.)

Me: “Um. I only found out I need a mastectomy two days ago. I think I’m still dealing with a measure of shock. There’s a bit of an ick factor with reconstruction, moving tissue from my tummy to my chest. I’m not sure I wouldn’t rather just be flat chested.”

Surgeon: “So you’d rather be a martyr?”

(What the….did she just say martyr! Is she trying to bully me into surgery? Does she realise that a martyr DIES? Could there be a more inappropriate thing to say to someone facing mastectomy? Okay….settle down. You might still want this woman to cut into you so don’t go pissing her off.)

Me: “Err, no. I don’t want to be a martyr. If you mean do I want to make a point of the fact that I’ve had a mastectomy then, no. I’d dress appropriately. This is major surgery and I need to think about it. Kylie tells me it will be six months before I’m fully recovered.”

Surgeon: “Well that’s an overstatement. The alphas that have this are back abseiling and kayaking and rock climbing in about six weeks.”

Graham: “Is the abseiling compulsory?” (How I love him.)

She’s visibly annoyed. I expect her to say “Why have you been wasting my time?” but she holds back. She tells me that she’ll need to know by Monday morning because if I don’t want the spot on the list there are other people waiting for it. Pressure, pressure, pressure. Then she says “We like patients like you. You’re fit and you’re positive.”

As I leave the surgery, her receptionist restates the need for me to let them know as soon as possible, talking to me as if I’m a naughty girl who won’t eat her broccoli. It’s the same tone you’d use to say, “There are children in poor countries with nothing to eat.”

In spite of the surgeon’s manner I’m less averse to reconstruction that I was before I saw her. In the car home I put my hands on my breasts and think about the difference between having nothing and having something. Graham and I talk about it and I ask him if, sexually, having something there is likely to make a difference to him. I know this is my decision but this is our relationship and I’d really like to know what he thinks. He tells me again that he’ll love me whatever I decide. He also says that he doesn’t think the reconstruction will make a difference, particularly as I’ll have less sensation in the transplanted tissue. And if I want it I should have it.

By the time we’re halfway along the expressway I’ve recognised that my interest in reconstruction has more to do with wanting to be a star patient than with what I want to have happen to my body. This is the over-achiever in me. Given the opportunity to do something I will always try to do it well. I congratulate myself on recognising this propensity for what it is. I do not want to be part of this doctor’s photo album, even if I’m the best work she’s ever done.

As a final part of the process I read through the information she’s given me and ask to join the reconstruction group on the Breast Cancer Network Australia site. This group posts comments and photos. It’s probably one of the best places to research reconstruction. I am eternally grateful to the brave and amazing women that have shared their experiences. I cringe at the pain they’ve been through to rebuild their bodies and their lives. I respect, without reservation, the decisions they have made for themselves. It’s very clear that many of them have found reconstruction beneficial in helping them to deal with the trauma of mastectomy. The rest of this blog is about why I won’t be joining them. Please know that if you’ve decided on reconstruction, I mean no offence to you. As everyone says, this decision is extremely personal (could anything be more personal?) and we all walk our own path.

For those facing a similar decision to mine, here are the reasons I’m not having reconstruction:

1. The least possible surgery
Graham makes a good point. The best thing I can do for my health is to have the least possible surgery. Ten or eleven hours on an operating table along with the increased risk of infection, anaesthetic complication and death can be avoided. Cosmetic surgery is, by definition, not medically required.

For this reason I’m also opting to have a bilateral mastectomy (both breasts) which sounds like more surgery but actually avoids the need to have future surgery to remove the right breast. My surgeon tells me the risk of cancer in that breast is low. So was the risk of recurrence. Not chancing it. I’m also large breasted and having one large breast will be harder for me to cope with than having none at all.

It’s also clear from my research that reconstruction usually involves more than one operation. Some women have been back three, four or more times for revision. Each surgery carries risks and each needs more recovery time. In some cases, complications include tissue death and serious infection. There’s also a possibility (small) of the transplant not taking. All of these possibilities horrify me. I can’t think of any good reason to take these risks with my health.

2. The least possible recovery time
Kylie tells me I’ll be back doing modified yoga within three weeks of my mastectomy. Recovery from reconstruction takes much longer and she says (although the cosmetic surgeon disputes this) that I wouldn’t really achieve full recovery for six months. I want to be well as soon as possible. I want to get back to my life.

One in four people with triple negative breast cancer (and one in six for the other types) won’t be here in five years time. I’m doing everything I can not to be one of them but if it turns out I’m the one in four I don’t want to have spent a big chunk of that time having and recovering from surgery.

Radiation means I’m at higher risk of seromas, infection and poor healing no matter what I decide. Those risks are compounded if I have the more extensive surgical option. I don’t even want to think about golden staph!

Removing my tummy also means cutting into the area where I had my appendix out as a child. I’ve already got adhesions from that surgery and further surgery to that area is not desirable.

3. No more bras
Large-breasted women will get this. Also, no more neck pain, back pain or trying on beautiful dresses where the waistline is up under my breasts. It’s not all bad news.

Both a reconstruction and a single mastectomy would require me to wear a bra. I’ll probably follow the example of my good friend, Jo, who sometimes wears prosthetic breasts when she’s out (and sometimes not). It will be nice to take them off an put them in a drawer when I get home.

4. Much less pain
Pain following reconstruction is acute. People that come through it will tell you it’s the worst pain they have ever experienced. It’s the reason Kylie says that everyone spends the first week regretting reconstruction. Women experiencing bilateral mastectomy tell me that it was painful, but less than they were expecting.

5. Less scarring and I keep my tummy
Reconstruction would require a scar running across my tummy from one hip to the other. I’d also have a scar around my belly button and scars around each of the reconstructed breast mounds. Mastectomy will give me two scars, one on either side and will leave my tummy intact.

A few people have commented that I could score a free tummy tuck out of this (whoopee!) and it’s made me realise how much I love my tummy exactly as it is. Yes, it’s soft and a little rounded. That’s because I’m a 52 year old woman whose had a baby. When I think of my daughter my hand instinctively goes to my tummy. This is where she grew. I like being a little bit rounded. This is what most women my age look like. I had a flat tummy when it was age appropriate. I don’t want one now.

I’m also a bit prone to keloid scars, where the scar rises up in a ridge. This didn’t happen with my breast surgery (Kylie is brilliant) but every other incision has resulted in ugly scarring. Best to keep the cutting to a minimum.

Triple negative is also known to have a propensity to recur in scar tissue. I don’t know how thoroughly breast tissue can be removed and you only need one cell to germinate another cancer. Of course, I can’t avoid any scaring but having the least possible scarring seems to be my best choice.

6. Psychological benefits
For me, there are numerous psychological benefits in having a bilateral mastectomy. I will no longer have any breast tissue and this will significantly reduce my fears of recurrence. My smooth chest will more readily show symptoms of recurrence. I will avoid ongoing mammograms and the inevitable stress while I wait for results. I would still need to go through all of this with reconstructed breasts.

The symmetry will mean that, with clothes on, I will look just like all those women that are naturally small breasted. Nothing about my appearance will say ‘cancer survivor’.

My husbands hands will still be able to touch the skin on my chest and I will still be able to feel that touch. There is no compensating for the loss of my nipples and I will miss them more than my breasts. They’ve always been a favourite part of our intimacy and I am struggling to imagine how I will feel without them. Reconstruction would not alter this. Reconstructed nipples don’t have sensation.

When I try to imagine how I will feel standing naked in front of a mirror, the look of a bilateral mastectomy appeals to me more than the scars of reconstruction. Both come with ongoing body issues and for me, mastectomy will be much easier to deal with. I’ve looked at several photos of bilateral mastectomies and most of them look good. I can be okay with this.

Conversely my personal reaction to the results of reconstruction are not pleasant. So many scars. So much pain. I recoil from the idea that I would put my poor, long suffering body through that for cosmetic reasons. Something about reconstruction makes me nauseous. Me, who never suffered nausea through chemotherapy. It’s a visceral reaction and I can’t fully explain it, but I know it would be wise not to ignore it.

I know that the psychological benefits of reconstruction are possibly the single greatest reason that other women decide to have it, but it’s not for me.

When I spent time during treatment with a psychologist she helped me to identify what my values are. ‘Health’ came up number one. This is a decision consistent with my values. I have come to understand that nothing is more important to me than my health and that avoiding anything with the potential to undermine or compromise my health is very important to me. Reconstruction is unnecessary surgery. It’s about how I look rather than what’s best for my health.

I’m booked in for a bilateral mastectomy on the 8th of August. I’m thinking of it as my new dolphin chest. I’m considering that, at my age, my breasts were not going to get better looking with age.

But how I will miss them.

 

 

A Day in the Life of a Radiotherapy Patient

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For those about to undergo radiation treatment or those just interested in what’s involved, here’s a typical day in one of the thirty days when I’m zapped for my own good.

I wake up late. Radiotherapy makes you tired. I’ve also had some uncharacteristic difficulty getting to sleep and I sometimes wake with a jolt during the night, sure that I’ve just dreamt something shocking enough to wake me but unable to recall it. I don’t know if this is related to treatment.

I usually dress in my gym gear straight from bed because this makes it more likely that I’ll do my daily yoga. Lately it feels like I can hardly lift my arms but I know that I need yoga the most when I least feel like doing it. Even five minutes makes a difference. I have coffee first, then do as much yoga as I can handle and then have breakfast.

My treatment is usually scheduled for the middle of the day. I thought this would help me to avoid school traffic and also provide me with the opportunity to combine treatment with lunch. Lovely lunches with girlfriends have helped to make treatment more pleasant.

I usually use the time between yoga and treatment to catch up on a few chores, check my messages or pick some produce from the garden. After this I shower. I have the water at my usual temperature while I wash and then I turn the hot down and run the cooler water over the area being treated for a few minutes. This really seems to help and my skin always looks a lot less pink afterwards. To make sure I have enough time under the cool water I sing ‘Happy Birthday to You’ twice.

When I get out of the shower I don’t dry off. I have some hemp oil in a pump pack with some essential oils in it to improve the smell. I used this all the way through chemotherapy and it’s still keeping my skin healthy. It goes on in a thin layer all over my wet skin from the neck down and then pat myself dry. I pay special attention to my left breast, the centre of my chest and the area under my arm. It’s easy to find because the radiation makes it pink and it’s also causing some seborrheic keratosis (little brown lumpy things on my skin). I’m careful to avoid anything that might interfere with the radiation treatment including sun block, anything with minerals in it or zinc cream. The advice from the nurses at the treatment clinic is to only use natural products and to avoid anything with chemicals. Too easy. They sell a range from a company called ‘Moogoo’ but it’s not compulsory.

After my shower I dress in something that will make it easy for me to strip to the waist. I also wear shoes that are easy to slip off. I like to get a bit dressed up for treatment. It’s part of feeling positive and confident. No, my self esteem is not linked to my wardrobe but the ‘Look Good, Feel Better’ program helped me to understand how much better you feel if you know you look nice. I’m a convert.

The drive to the treatment clinic is about 20 minutes from home and there’s plenty of parking. As I come past the reception area I scan my card with a bar code. I don’t like having a bar code. It makes me feel like a product. Yes, it helps the clinic run more efficiently and it ensures I rarely wait more than a five or ten minutes, but I still don’t like it. I keep thinking of alternatives, like a really cool key ring or a bracelet. I have a seat in the large waiting room. There’s a coffee machine, biscuits, magazines and even some communal knitting. There are stands with lots of Cancer Council information and free turbans made by local crafts people. I’m not usually here long.

The sliding door opens and they call my name. I needed to remind them during the first week that I am not a ‘Mrs’ and I prefer to be called by my first name. It might seem like a small thing but anything I can do to make this process more pleasant is worthwhile. I walk down a short hall to one of two change rooms. They both have good curtains to ensure privacy and a sign asking people not to enter if the curtain is closed. My gown is stored between treatments in a pigeon hole on the wall. There’s a piece of tape with my name on it. I strip from the waist up and put on the gown, opening at the back. I put anything I take off in a basket and then sit on a chair in the hallway with the basket on my lap while I wait to be called in to the treatment room. People I don’t know walk past me. Some of them smile. Some of them do that disconnected busy stare that people use to avoid contact. Once again I wish the waiting area was more private.

The clinic has about ten different technicians. Over the course of treatment I’ve met most of them and I make a point of remembering their names. It’s another way to make things more personal. One of them calls me into the treatment room. It’s huge, and so is the machine, but not claustrophobic. I head straight to their iPod set up and plug in my own music. It’s my relaxing selection from chemotherapy. I don’t like their 80’s hits and they’re very happy for me to bring my own. Just one more way to personalise the experience.

There’s a foam support on the treatment table that goes under my knees and a moulded support for my body. They made this at my planning session. It’s like a small bean bag with the air sucked out of it. I lay back into it and take my arms out of the gown so my breasts are exposed. I put my arms above my head and hold on to the top of the body mould. My job from here on in is to imagine I am a bag of wet sand.

Two technicians find the four tiny tattoos on my body and mark them up with marker pen so they’re easier to see. They use a laser line and the markers on the table to line me up. This usually only takes a minute or two. Sometimes they need to push the body mould over slightly, or to use a cloth under me to roll me just a tiny bit. My left upper arm usually needs to be rotated so it’s not in the way. Sometimes they adjust the whole table and there’s a loud clunk with each adjustment. I need to resist the temptation to help them. Helping isn’t helping. Be the bag of sand.

The technicians sometimes exchange a bit of small talk but mostly they have a conversation predominated by numbers. Twelve. Twelve. Six point five nine. I’ve got eight……..

Once they’re happy with my position someone always say “Here we go,” and sometimes “Stay still now” or perhaps “We’ll see you in a couple of minutes.” There’s a closed circuit camera above the machine and a two way microphone so they can see me and talk to me if they need to. They don’t usually need to. They know I prefer to have the lights down so someone usually adjusts them on the way out. I appreciate this kind of consideration. I also like it when someone thinks to cover my right breast. I know it seems redundant when I’ve been so exposed but it’s a sign of respect and understanding. Nobody likes to be this exposed and anything that reduces the discomfort is welcome.

The machine rotates around me. I can see a large, grey rectangle above my head. There’s a sticker on it warning people not to sit on it. In my current position I find this concept mildly amusing. I imagine technicians throwing wild parties and riding the machine. They use it to take an image and there’s a low hum. Then there’s a pause while they look at the scan.  I wait. I breathe. I imagine wet sand and try to relax my body.  Sometimes they adjust the table remotely. Clunk. Clunk.

The machine rotates again and a large metal circle with a glass window moves over my head and down below my left shoulder. On the roof I can see a curved shadow silhouetted by the light from the machine. It’s dissected by the red laser line. I don’t know if it’s a shadow of my breast or my arm and I can’t move to find out. Why do I have the same thought at every treatment? The machine gives off a metallic hum for a couple of seconds, followed by a shuffling as the aperture is adjusted and then there are two shorter bursts.  The machine rotates again and now the giant eye is above me and hovering over my right shoulder. It’s pointed back towards my left breast and the sequence is repeated. One longer hum, shuffling and two shorter hums. The whole thing only takes a few minutes.

About half a minute later and I can hear the door to the treatment room open. I’m told I can put my arms down and I take the opportunity to put the gown back on and cover myself up. One of the technicians adjusts the table so I can climb off it. I unplug my iPod, pick up my basket and head back to the change room. I use my own wet wipes to remove the marker pen from my body and once again wonder why they don’t do this, or at least provide the means to do it. The first couple of treatments I had marker pen stains inside my bra. I get dressed and head home.

There hasn’t been any effort to explain the treatment plan to me. The treating doctor explained the rationale for radiation treatment at my first consultation and since then someone has put together the actual treatment schedule. I know from the sheet they give me with all my times and dates on it that I’m having ‘syn breast six flds’ but I haven’t asked for details. It’s unlike me. I’m usually the information glutton.

When I get home I take my top off and soak the treated area will cool, salted water. This idea came from a book I read and not from the clinic but the nurses there have okayed it. I put a teaspoon of salt into a couple of cups of cold water and use a washer to soak my breast and underarm. I do this for about ten minutes and my skin looks and feels cooler afterwards. I follow this up with some cream. I’ve been using an aloe vera based body lotion by Swisse which smells and feels lovely.

If it’s possible, I try to spend the next few hours without a top on. A lot of the problems associated with radiation are caused by clothing rubbing against the site. No clothing means no rubbing. Simple. My husband is particularly fond of this part of the treatment and is also happy to help me apply cream. He stands behind me and makes sure I’m well covered. We laugh and kiss. Suddenly radiation treatment is not so bad after all.

This has been my week day routine for the last several weeks. I get weekends off. I usually try to give the area a special treatment on weekends, like a good, thick coating of paw paw ointment. It all helps. I rest. I sleep. I am getting very good at taking it easy. Radiation works by killing off the cells in my breast. The healthy ones regenerate and any stray cancerous ones get zapped.

Every so often I have a treatment review with one of the nurses. They check on my progress and how my skin is holding up. They’re both lovely, compassionate women. I’ve had one appointment with the doctor during my second week of treatment. I only have one more visit with him when treatment is finished. Once a week a get a bill for services and they process the medicare claim at the same time. Treatment won’t cost me more than $2,500. If I had gone to the public hospital I could have had it for free but I elected to use this private clinic. They take an image before every treatment to make sure they’re on target and the public system only does this once at the start of treatment and once half way through. With my heart so close to my tumour site I thought this was an important difference. I’ve also spoken to two women that used the public system and both complained of long delays and nasty skin burns.

I’ve still got seven treatments to go but so far no skin burns. I am so relieved. Fingers crossed for not having to deal with that although I’m told they can still occur in the weeks following treatment. My doctor was of the view that I might not have any burns so there’s something in the way treatment is planned that obviously has an impact upon this.

Seven treatment days to go. Some of this will involve a ‘boost’ to the tumour bed and they’ve already mapped me for this. They’ve got a piece of transparent film that they put over my breast while they copied their markings and they’ll use that to position me for this part of the treatment.

There are risks associated with this treatment, including a very small risk of a more aggressive cancer, but given the aggressive nature of my original cancer and the overwhelming data showing radiation can reduce my risk of recurrence, I’ve decided to have it. Like so many aspects of cancer treatment this is a very personal and individual decision. Some people prefer to avoid the risk of side effects by taking their chances. It can be a hard call.

Apparently some people get emotional on the last day of treatment. I’m guessing that’s the relief of having it all over and done with. I’m going to organise lunch with a girlfriend. There may be a few tears but I don’t think so. I’m starting to shift my thinking beyond treatment.

This will be the end. From June last year until April this year my full time job has been recovering from cancer. Now I’m planning life after illness. I’m very much looking forward to that. I’ll also be counting down to my three year anniversary. Triple negative breast cancer has a higher rate of recurrence than other breast cancers, but if I can make it to three years without that happening the odds of it coming back at all drop significantly. I’m very much looking forward to that, too.