A Conversation With My Surgeon and Another With an Anti-radiation Advocate

After the shock of my pathology report and the information that they’d found DCIS (ductal carcinoma in situ) I left a message with my surgeon’s receptionist asking that my surgeon give me a call.

DCIS is considered a pre-cancerous condition because the cancer cells are confined within the ducts within the breast. It’s not yet invasive cancer. It’s usually categorised as either low grade (best and least likely to become cancer) or high grade (worst and most likely to become cancer). The DCIS in the tissue they removed from my breast is high grade.

You want any kind of cancer removed from your body with what they call ‘a clear margin’. This is essentially a wall of healthy cells that cover the tumour. If you don’t have clear margins there’s the possibility they’ve left some active cancer inside your body and the options usually include having another operation to see if they can remove that bit, or having a mastectomy. I wanted to talk to my doctor about why I wasn’t having either.

It’s not that I doubt her decision. In fact, it’s not just her decision. My surgeon meets as part of a multidisciplinary team to discuss all patients. The team includes a pathologist, and oncologist, a radiation oncologist, a breast care nurse and a patient advocate. This idea of a team approach is relatively new and, in my opinion, absolutely brilliant. Instead of one person making a decision about the best course of treatment, a whole group of them get together. My particular team is full of brilliant people, many of them considered to be among the very best in Australia. I am in very good hands.

The recommendation for my treatment is radiation.

I got a message on my phone yesterday from my surgeon letting me know she would ring me at 8.30pm after she had put her children to bed. Yes, she’s that dedicated.

I had a very encouraging talk with her. Let me see if I can explain things as well as she did.

During surgery, they removed a piece of skin and tissue from my left breast which, in simple terms, was roughly the shape of an elongated cone with the bottom cut off. The top of that cone is my skin (the outside surface of my breast) and the bottom of the cone is the tissue that would have been sitting up against my chest muscle.

The primary tumour was entirely within this cone. Clear margins. This is a great result.

The DCIS was in the bottom part of the cone and didn’t have clear margins. The part of the cone where the DCIS was at the edge of the tissue sample is in the centre of the bottom of the cone. Imagine you cut the bottom off a drumstick. That chocolate bit you can see is the DCIS. Now imagine the cone is healthy tissue. There was no sign of DCIS anywhere around the outside of the cone. If there had been, my surgeon would have been worried, but because it’s completely contained within the bottom edge of the cone she’s confident I don’t need further surgery.

This is because she’s removed tissue all the way down to my chest muscle and she’s been able to look at the fascia, or surface, of the chest muscle and can see that there’s no sign of cancer there. She assures me that cancer in the fascia is easy to see. If she’d seen any she would have included some of that muscle in the removed tissue.

She has also told me that the tools they use for surgery burn away tissue and it’s possible that some tissue has been lost from the bottom of the sample because of this. There may have been a margin but it’s been burnt away during surgery.

I am greatly reassured. Onwards to radiation.

If only I hadn’t had to deal with an anti-radiation zealot this week! “Radiaiton causes cancer!” he asserts. “It turns cancer cells into breast cancer stem cells which give you cancer!” Argh!

Having checked the research I can report that he’s kind of, sort of almost correct. There is some evidence that indicates that radiation MAY turn some cancer cells into breast cancer stem cells which MAY then turn into cancer. What he apparently fails to comprehend is that radiation is also killing existing breast cancer stem cells at the same time, so the overall result is a net loss in the total number of breast cancer stem cells. This is why radiation continues to WORK! If all it did was turn breast cancer cells into stem cells then radiation patients would be dropping dead like cicadas at the end of summer.

The alternative is that the highly trained, multidisciplinary team that are making recommendations regarding my treatment are either involved in an elaborate conspiracy to keep radiation oncologists employed even though they are killing people or that the highly trained, multidisciplinary team that are making recommendations regarding my treatment are failing to notice the stunningly high recurrence rates in patients that have radiation therapy. Neither of these hypothesise seems even remotely likely.

Meanwhile this possibly well meaning and incredibly dangerous person seems determined to misinform cancer patients about the risks associated with radiation. And he’s not alone. Unfortunately, this man was once a registered doctor (since struck off – but only suspicious ex-cops like me would be inclined to check that) so he sounds very convincing.

Here we go again.

Regular readers will recall my blog on all of the nonsense out there trying to convince people not to have chemotherapy. It seems that many of the same people are determined to undermine radiation therapy.

As if cancer patients don’t have enough to deal with.

Once again I’m going to make my decision based on data and research which shows my chances of survival are greatly improved if I have radiation therapy. My radiation oncologist was able to access a data base and give me statistics about the extent to which this treatment has been shown to prevent local recurrence of the cancer and metastasising cancer. To get these numbers, he fed in the grade, type and size of my cancer along with some other personal details. The figures are sufficiently impressive in my case that I’m prepared to go ahead. He’s also explained all of the risks associated with this treatment, including a small risk of a different type of cancer and the possibility of heart trouble in 25 years. I said at the time that if I get heart trouble in 25 years I’ll send him a thank you card.

The man telling me not to have radiation says you can’t trust data and research. I told him I’ve chosen not to trust the research he’s citing to ‘prove’ I shouldn’t have radiation therapy. Apart from the fact that he seems to have missed the point of the research, one of the researchers was later required to disclose his association with a pharmaceutical company that manufactured the substance they recommended for reducing the problem they reported. I know that doesn’t prove he has a conflict of interest or that he was pressured regarding the findings, but it’s enough to be cautious.

My advice if someone tries to scare you about your treatment is to talk to your doctors. Most of them are very experienced with (and probably more than a little weary of) all of the anti-treatment arguments. Some of them even have support staff available to sit down with you and talk you through all of the issues. Breast care nurses can also be a great source of information, depending on their training and experience.

At all times I find it helpful to keep this in mind: And suggestion that all of the doctors and health care professionals are conspiring with large pharmaceutical companies to boost profits is ridiculous.

When you’re a cop you know that the more people you involve in a conspiracy, the more likely it is to be discovered. Once you get above five or six people it’s almost a certainty that someone’s going to talk. Humans are not very good at keeping secrets. And yet we’re supposed to believe that hundreds and hundreds of professional people are acting against our best interests? That’s just ridiculously improbable.

The treatments we have for all types of cancer are less than perfect. We are not (yet) at the stage where we can talk about a reliable cure for breast cancer but survival rates have continued to increase year after year. Why is that?

Yes, it’s possible that some of that might be due to improvements in the life styles of patients but not so much that this alone would account for it. What that means is that the existing mainstream medical treatments have continued to improve and more and more people are surviving for longer and longer after their initial diagnosis.

I am more likely to survive now that I would have been if I had been diagnosed ten years ago. Much more likely to survive than if I had been diagnosed 20 years ago. I have the medical profession to thank for that.

Anyone that tells you otherwise is unable or unwilling to understand the evidence.

 

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Sinking or Swimming

Sink or swim. That’s what I’ve been saying to myself since my pathology results on Wednesday.

Sink or swim.

The week has been full of small gifts.

A friend moved to Tasmania and reminded me that I taught him about the destructive nature of anger. I released my anger.

A friend from Canberra spoke to me about his generosity towards other people, even when they don’t appreciate it. I felt more generous.

A friend that has reconnected after many years apart reminded me that most people diagnosed with breast cancer DON’T die from it, even people with highly aggressive, grade three, triple negative breast cancer. I remembered the importance of hope.

Someone I don’t know at all reminded me of the advice I’ve so often given other people: There’s some things you cannot change but you can always change how you think about them and THAT changes everything.

A friend in the USA sent me off on an exploration of Brian Andreas’s beautiful work. I remembered the pleasure of simply being alive. I remembered that fragile things are beautiful. Life is precious.  

You can see Brian’s work here:

http://www.storypeople.com/storypeople/ShowProduct.do?productItemID=2968

I wrote, I rested, I ate good food. I managed a modified yoga routine and remembered the words of my very wise yoga teacher: “Breathe. Practice non-violence with your own body.”

I went out into the garden and my husband, not a gardener, joined me. We spent two days together, weeding and pruning. He moved the mulch that was too heavy for me to lift. We rejuvenated the piece of garden I can see from the bedroom window. Every time I look at it I’m reminded how much he loves me.

Slowly, slowly, I came back up again. Sink or swim.

Sometimes it’s not a matter of ‘sink or swim’, sometimes you just need to float for a while.

I feel as if that’s what I’ve been doing since Wednesday.

I never doubt that I’ll start swimming again but it sure helps to have all these people cheering from the shore.

It’s time to start swimming again. Thank you to everyone. I am so fortunate to have all of you in my life.

Landing With a Thump

It’s been my flattest week since my diagnosis.

I’ve read my pathology report a couple of times. Know your enemy.

Way back when all of this started there were some problems with the lab that did my initial report, including the fact that they specified the wrong breast! I think part of my was holding on to the possibility that I really didn’t have such an aggressive cancer. I was hoping for a lot of red-faced apologies. “Sorry, Meg, it’s actually a much less serious cancer than we originally suspected.”

Nope.

Cancer gets graded based on how aggressive it is. They look at the microscopic features of the cancer including how similar it is to healthy cells. Less similar means more aggressive. They give three aspects of the cancer a score and then add these up. Grade 1 is the least aggressive and grade 3 is the most aggressive. Like my father before me, mine is a grade 3 cancer.

I was also hoping for a full pathological response. This would mean that the chemotherapy had completely killed all of the cancer cells. It would have greatly improved my survival odds.

Nope.

Part of my problem was riding the wave of optimism generated by my doctors. My oncologist told me she was pretty confident we were going to see a full pathological response and my surgeon, on the day after surgery, also told me things were looking good. While the chemotherapy has certainly killed three tumours, the primary tumour still had islands of active invasive cancer spread throughout the dead tissue. So nearly dead but not quite. On the plus side, the whole of the tumour was removed with clear margins.

I was less than thrilled to learn that one of my lymph nodes also showed signs of having been attacked by the cancer. It’s dead now, but the fact that it was there at all is unsettling. On the positive side, if these cells were evidence of it moving out into my body then the chemotherapy would have attacked it and, hopefully, killed it.

The big shock is the presence of DCIS (ductal carcinoma in situ) under the tumour and extending all the way to the bottom of the incision. This hasn’t come away cleanly.

The trouble with a doctor’s appointment is that you’re time limited. I know my surgeon said something about going all the way to the chest wall but I didn’t hear ‘DCIS’ and so the pathology report was another shock. From my own research I know that DCIS is a pre-cancerous condition and that many people have it for years without it becoming cancer, but mine is still grade 3 and I’ve just had a surgeon cut into it.

I’m reassured that the multidisciplinary team that meet to discuss every patient have concluded that radiation is the best option for me now.

Of course, the whole point of radiation therapy is to ‘mop up’ any remaining cancer cells so it’s just as well I’m booked in for that. Unfortunately it can’t start until my wound heals. Now I have a month of living with the possibility of a grade 3 cancer growing or spreading in the absence of any treatment.

I have no choice. The only other option was more surgery and they’ve decided against that. I’ve left a message for my surgeon to call me so I can be clear about why we’re not doing this. I know she’ll have a good answer. I’d just like to know what it is.

I’m frightened.

I’m disappointed.

When I asked my surgeon what the chances were of this cancer killing me, she said, “Ask me in two and a half years.” In other words, she doesn’t want to speculate but the statistics say that if I can make it to three years after my diagnosis then my chances improve dramatically.

Now that’s what I call a long wait.

Welcome to cancer land.

I spent a week after surgery feeling so well and so positive it was hard to believe I’d had surgery. This week I landed with a thump.

Day by day I’ve been pulling myself back up again. I’m greatly assisted by my wonderful friends and family, particularly my husband. I’m putting together a be-as-well-as-I-can strategy as a way of feeling more in control between now and radiation therapy. Because of my pathology my surgeon has asked that my radiation oncologist include the centre of my chest as well as my left breast. Who would have thought I’d be so keen to get into that great big machine and to expose my body to radiation, but suddenly I’m very, very keen.

Head down and bum up. Keep moving.

Fuck you cancer!

Peripheral Neuropathy

I’m on the hunt for anything that can help with peripheral neuropathy (PN).

I’ve seen posts on the Breast Cancer Network site that mention taking B vitamins but this advice appears to be based on the fact that B12 deficiency can cause PN. Certainly, if you are B12 deficient then this supplement would help but for those of us with chemotherapy induced PN I can’t find any evidence that it will make any difference.

Here’s the only study I could find and it says it’s unlikely to help:

http://www.ncbi.nlm.nih.gov/pubmed/18646107

What I have found is some evidence regarding the supplement acetyl l carnitine. As a fibromyalgia sufferer, I’m familiar with this. It’s excellent for relieving fibro symptoms and there’s a small double blind trial that demonstrates this:

http://www.ncbi.nlm.nih.gov/pubmed/17543140

I’ve also found these studies relevant to peripheral neuropathy:

http://care.diabetesjournals.org/content/28/1/89.full

^This one is about using acetyl l carnitine to treat PN in people with diabetes. The study concluded that this supplement did help to reduce pain and to increase the regeneration of nerve fibre clusters. Interesting, but does that mean it’s good for chemo induced PN?

http://www.oncologypractice.com/oncologyreport/news/patient-survivor-care/single-article/acetyl-span-classsmall-capslspan-carnitine-yields-mixed-results-for-chemo-induced-neuropathy/b4ec0d9cec31908c2219419ef93bbd3c.html

^This article compares two bits of research about acetly l carnitine. The first involves a study where people took it during chemotherapy and it made their PN WORSE! The conclusion was that it should NOT be taken during chemotherapy. I was taking it before I started chemo and, once again, this research confirms my oncologists advice that you shouldn’t take any supplements other than vitamin D during treatment.

The second piece of research involved a study in China where people with chemotherapy induced PN were given the supplement after their chemotherapy (in some cases, well after). The results were that there was a statistically relevant improvement. The caution on this research is that the population was entirely Asian: the researcher commented that there may be difference in DNA that meant the supplement worked better for people with Asian heritage.

My conclusion; There’s sufficient evidence of the beneficial effects of acetyl l carnitine to make it worth a try.

I’m going to start taking it again now that I’m weeks out of chemotherapy and I’ll report any improvement in my peripheral neuropathy. It’s now just over a month since I stopped chemo and my PN doesn’t seem to have improved at all. I’m only going to take this supplement until I start radiation on the 26th of February because I think it’s wise to avoid taking anything at all when I having either chemo or radiation. That should be long enough to see if it makes a difference.

I’ve found some research into the use of accupuncture to treat PN including this:

http://www.ncbi.nlm.nih.gov/pubmed/17355547

It’s not a particularly large sample but the results are promising. I know from past experience that accupuncture usually requires several treatments over a number of weeks so this will be an option for me after radiotherapy if I’m still having problems.

Other strategies I’m using include:

* Yoga – great for my circulation and my balance. If you google ‘yoga and peripheral neuropathy’ you’ll find some specific exercises designed for this conditon. I can’t find any research to back any of this up but on the basis that yoga is so good for me anyway, I’m going to keep doing it every day.

* Walking – Graham and I are heading out each evening for a walk. My legs and hips are so sore that we were only making it to the end of the street when we started but we’re going just a bit further each day. I’m feeling better for it.

* Epsom salt baths – Grandma’s cure for aches and pains and supported by science; epsom salts contain magnesium which helps to relieve muscle pain. I’ve found it’s great for short term relief of PN.

*Massage – I’m massaging my hands and feet every day using my hands and this great little plastic ball with spikes on it that my daughter gave me for Christamas. My husband suggested those massage sandals with the little nodules all over them but the ball does the same job. I also found some spiked plastic balls being sold as ‘dryer balls’. They suggest you put them in with your clothes to fluff them up and stop them tangling. They make the most dreadful noise in the dryer but they are wonderful for hand and foot massages.

*Touch – I’m spending some time each day touching different surfaces and textures with my hands and feet. I’m hoping this helps to rebuild the connection between my brain and my fingers and toes. At the very least, it reassures me that I can still feel things through the numbness.

*Warmth and protection – I’m finding that my hands and feet feel better if I don’t let them get cold. I’m also making a point of wearing shoes and being very careful when I use knives. The numbness puts me at greater risk of injuring myself.

*Attitude – I’m not letting the numbness get me down. Even if I’m stuck with it, it’s a small price to pay for my life-saving chemotherapy.

If you come across any other research on PN or if you discover something that works for you I’d love to know about it.

POST SURGICAL PATHOLOGY RESULTS

Short version; it’s not as great as I had hoped but it’s still good news.

Long version; The tissue sample still had some islands of active cancer amongst the dead tissue but the margins are clear (meaning they’re pretty sure they’ve got it all). One of my removed lymph nodes had evidence of dead cancer cells and the other four were clear.

Thanks to the decision to have chemotherapy first I’ve avoided a mastectomy, avoided ‘full clearance’ of my lymph nodes from under my arm and avoided all of the complications that can come with that treatment.

I’m remembering how lucky I was to have this cancer detected in the first place. If it hadn’t been for a letter from Breastscreen I would be dead, or very very sick by now.

I’m remembering how lucky I was to have someone recommend Kylie Snook and the Mater Hospital. Then to have Kylie refer me to Rachel Dear as my oncologist. If I’d been treated locally then having surgery first would have been my only option. I would be recovering from a mastectomy, coping with all of the complications of having no lymph nodes down my left side and around about now I’d be finishing chemotherapy. The difference is that I would have no idea if the chemotherapy was working because the tumours would have already been cut out. It’s possible that I could have already developed more tumours, particularly if the chemotherapy protocol turned out to be something that didn’t work on my particular type of cancer.

I’m remembering how lucky I’ve been to have had a response to chemotherapy. Kylie talked to me today about the patients she’s seen whose tumours dig in and either grow or hold stable in spite of everything they throw at them. There’s no guarantees with any cancer treatment. Everyone is certainly doing the best job they can with what they have but sometimes the cancer is too aggressive.

I’m counting my blessings.

I’m also saying ‘fuck’.

Fuck fuck fuck fuck fuck.

It’s a good word to say when you don’t get the news you really wanted. I really wanted to hear ‘full pathological response.’ The reason I wanted this is because it would have improved my survival odds considerably. A full pathological response pushes triple negative breast cancer patients into the same statistical bracket as other breast cancers. 86% of them are still alive after five years. Nearly 90%. In simple terms that means one in ten will die. Nine in ten will still be with us.

Not getting a full pathological response leaves me in the triple negative survival rate statistics. That’s 75%. Essentially that means I have one chance in four of dying in the next five years. Fuck. But also three chances in four of still being here! Which is so much better than being 100% dead. Which is what I could have been if my cancer wasn’t detected or if I hadn’t had chemotherapy.

This is life with cancer.

There’s what you want and then there’s what you get. The challenge is to experience the disappointment without letting it get me down. Fortunately I’m very good at that. I start from here; even if I only have three years left I’m sure going to make the most of them. I’m not going to waste them sitting around feeling sorry for myself.

Next step; While it’s possible this cancer could come back there is no point worrying about that until and unless it happens. Apart from anything else, worry isn’t good for me and probably messes with my immune system, so worrying about cancer can make its return a self-fulfilling prophecy.

Next step; There’s a lot I can do to improve my odds. I can eat well, watch my weight and make sure I enjoy regular exercise. I can focus on making sure I have the best quality of life that it’s possible to have. My surgeon thinks that quality of life is the most important thing when it comes to beating cancer.

I also need to spend just a little bit of time being sad about the result. I would have liked nine chances in ten instead of three chances in four. I didn’t get them. I’m probably going to have some entirely appropriate tears about that.

Then I’m going to remember that three chances in four is still really great odds. I’m going to remember that I’m feeling strong and healthy and looking forward to getting back to yoga class and going walking regularly with Graham. I’m going to go to lunch with my beautiful daughter and hear all about her plans for moving out and starting her next degree. I’m going to take a picnic blanket out into the yard and get Graham to read Douglas Adams aloud to me. I’m going to have my friends over for pizza, or organic grass fed barbecued meat or afternoon tea. I’m going to go op shopping with my Mum and listen to her funny stories about the retirement village.

The best thing about my pathology result is that I don’t need any more chemotherapy or surgery. We’re moving right along to radiation therapy and now we’re including the lymph nodes down the centre of my chest. This is because of the evidence of cancer in one of the removed nodes and the fact that my surgeon decided to leave a major node in my chest rather than break my ribs to get it out. (And for this I am also grateful!). She’s happy that it’s already been zapped by chemotherapy and that radiation will mop up any remaining nasty cells.

I’m going to take a few days to process all of this but I know I’m going to be well and strong and happy once I have.

I’m going to live.

Bra Wars

A long time ago in a galaxy far, far away, rebel forces riding vicious paclitaxels have won their first victory against the evil triple negative cancer.

During the second battle, a team of magical fairy doctors removed the entire battle ground, rendering the cancer homeless.

Now the rebel forces find themselves confined to…….The Death Bra!

(queue theme music) Da da da da daaaaaaaaaa

I trying find ways to laugh about bras at the moment. When you’ve had breast surgery you need to wear a bra all the time. There’s a brief break when you shower but it’s not much relief because you have to support your breast with your hand. Lucky my soap comes in a pump pack!

I’m large breasted. After a late start my overachieving body developed such impressive breasts that my high school friends suspected cosmetic surgery. I’ve enjoyed the attention they’ve attracted over the years, particularly those early years when they defied gravity.

I developed a new appreciation for them when I breastfed my daughter. Awesome, clever things, breasts. Even though one of mine has recently tried to kill me, I remain fond of them.

But I have always hated bras.

When you have large breasts, most bras look more like a parachute harness than an undergarment. They also have one thing in common. They all, to varying degrees, make your neck and shoulders ache. So I usually don’t wear one when I’m at home. I have yoga gear with that built in shelf bra made from a strip of elastic and some polycotton. These do nothing for your cleavage but they are really comfortable and you can bend your body in all sorts of directions without fear of popping out the front of whatever you’re wearing. I also have some heavy duty exercise bras for those times I feel like lifting weights or doing more vigorous floor exercises. I do not run. Not ever. Nobody over DD should ever, ever run.

I have ‘going out’ bras that have underwires. These give me a nice shape and they’re great under evening wear but after about three hours I either need to go home or increase my alcohol consumption. They dig at the shoulders and rub under the breasts. I’m very skilled at taking these off in the car without getting undressed. The first time he saw me do this my husband thought it was some kind of magic trick. Undo the back, pull the straps down over each arm and then pull the bra up through the neckline of whatever you’re wearing. Ta-daaaa.

I have bras that I think of as my ‘every day’ bras, but if I can get by without wearing them every day I’m a much happier woman. These are what I used to call ‘granny bras’ when I was younger. No wires, mostly cotton and reasonably comfortable compared to most kinds of bra. They don’t have the lift of my going out bras but they tame the bounce and somewhat counteract the effects of gravity if I want to go shopping or out with friends during the day.

When it comes to holding my breasts up I like to rely on my chest muscles. Don’t believe the myths about breast feeding. I’m 52 and my breasts still sit well because of all my yoga and the weight I carry around the garden when I move mulch.

When everyone was talking them up I bought a couple of those ‘ah bras’. These are a seamless, pull on job that’s now being sold in most of the chain stores under different names. It’s essentially a shaped crop top. Some of my smaller-breasted friends are big fans. All they really did for me was to flatten out my nipples. The only point seemed to be having no point. There’s not a lot of lift in them.

My small collection is enjoying a workout at the moment. The main aim of post-surgery bras is to prevent drag on the wound. Most people have their wound on the outer, upper quadrant of their breast. If you look at a breast and divide it into four quarters, that’s the top quarter closest to your underarm. Finding a bra to support this part of your breast is relatively easy. My surgery was on the inner, upper quadrant. It’s still up the top of the breast but towards the middle. Have a look at most bras and you’ll see that this is the part of the chest that’s usually either pushed up or cut across by a bra. It’s been a fun week!

So far the biggest surprise is that my going out bras are probably the best bras for the job. I’ve solved the strap problem by using two of my sweat bands from the gym and tucking them under the straps, but only around the house. This look is a little too ‘out there’ for the local shopping centre, so I use folded hankies. It seems you can buy padded things that fit under your bra strap but, as I’m treating this bra-wearing as a short term sentence I’m not investing in them.

My other trick has been to wear the bra over a cotton singlet. Nice. I was going to get my husband to photograph this attractive look and caption it ‘Madonna gets older’ and then I remembered she’s about my age. The advantage of wearing a singlet under a bra is that you don’t get rubbing around the bottom edge and it helps to cushion the straps. It’s the middle of summer here so this tactic is restricted to cooler days and nights but it’s worth keeping in mind. It would also be useful if you had a dressing that might leave marks on your bra.

At night I’ve discovered that two ‘Ah bras’ can do what one could not. I’ve bought some that are in a larger size and I put one of those on first. Then I put a smaller one on top of it. My other option is an exercise crop top style bra with a nice high front on it. Fortunately, (thanks to yoga) I’ve got a good range of movement, so wearing something that goes on over my head isn’t a problem. If you’ve had surgery that compromises your arm movement then neither of these will be much use to you.

I’ve tried the front opening bra that the breast care nurses provided. These are donated by Berlie to breast cancer patients all over Australia. Bless them. Unfortunately the front of it sits right across my wound.

When my shoulders get really sore I’ve figured out a way to use a long strip of stretch cotton as an alternative. I wrap it across my breast and over my shoulder. I wrap the tail around both breasts and then up my back and over the shoulder where I tie it off. You wouldn’t wear this out in public but it’s a great way to give my shoulders a rest while I watch television.

My main post-surgical tip for bras is to have lots of choices. If you can’t pull things over your head then learn to do what most big breasted women have always done and put your bra on backwards. There’s a reason we do this. It’s much easier to lean forwards and ‘drop’ your breasts into a fastened bra than to try to get them positioned well while doing it up behind your back. (For male readers, this method does involve us turning the bra to face the right way after it’s been done up. Just so you’re not imagining me walking around with my bra on backwards.) Having lots of bra options will mean you minimise any pressure points. You’ll probably still get some rubbing and soreness but at least you’ll be spreading the pain.

My other tip is to go overboard on the support. You’re trying to prevent your wound from pulling. That’s important. I’ve been putting a tight fitting singlet on over whatever bra I’ve decided to let torture me. I’m also holding onto my breasts in the car, particularly going over speed bumps or through pot holes. (Don’t worry. My husband is doing the driving.) I’ve also found that leaning forwards when I get out of the shower helps alleviate any pressure on my wound. I still support it with one hand or the other most of the time, but leaning forwards when I change hands helps, and I can now dry myself. My husband was very happy to keep drying me off but it’s nice to be independent.

It will be a week tomorrow since I had surgery. I’ve spent the week taking it very easy, doing my physiotherapy exercises and some light household chores. I’m feeling well and I’ve only had moderate discomfort from the surgery. This isn’t strong enough to call ‘pain’. I’m fortunate in not having to deal with drains and my surgeon used a waterproof dressing and dissolving stitches so showering is straight forward.

This is supposed to be a ‘horror week’ for breast cancer patients because I’m waiting for pathology results. I think it’s much less of a drama when you’ve already had six months of chemotherapy and you’ve already seen your tumours shrink. I’m feeling confident of a good result because I’ve already seen evidence of a good result. I’m hoping for a full pathological response and I’m also ready to take on whatever comes next if I don’t get that response.

And I’m starting to plan for radiation therapy.

The fun never ends!

What to Say. What Not to Say.

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It’s a cancer cliche.

Some people just don’t know what to say.

You’ll hear it used to explain the silence or absence of people that avoid you once they’ve found out you have cancer. I’ve written before about cultivating a attitude of tolerance and forgiveness towards these people.  There are lots of reasons why some people can’t cope or choose to distance themselves.

For those that really don’t know what to say, or worry about saying the wrong thing, here’s my quick guide.

First prize for saying the right thing goes to my friend, Don McKenzie:

“What is it with tits. Here I’ve been admiring them all these years and now they keep trying to kill people I care about!”

I love this response. He made me laugh and told me he cared about me.

My husband’s response really requires a similar sense of humour:

“Oh that’d be right. I get the flu and you get cancer. You’re so competitive!”

Now, to me, this made me laugh so hard I almost hurt myself, but some people would find this type of comment to be in extremely poor taste.

There’s a proximity rule when it comes to humour. The closer you are to someone the more likely you are to know what they find funny. If someone other than a very close friend or relative tells you they have cancer then going for laughs can backfire. Go with one of the simple, all purpose responses:

“I’m so sorry to hear that.”

“Oh shit! That’s terrible news.”

The next most common response is an offer of help. “Please let me know if there’s anything I can do…” The trick here is to make sure that you are actually in a position to help if you’re asked. Don’t just say it. It’s awkward and frustrating if people offer to help and then disappear, or provide excuses for being unavailable. Better than extending a general offer of assistance is to commit to something specific:

“I’m going to cook you up some meals to keep in the freezer for when things get tough. What do you like to eat?”

“I know you’re not going to have much time for the garden. I’m going to call around once a week/fortnight/month to do some basic maintenance for you. Let me know what day of the week is best for you.”

“I’m a trained massage therapist and I’m going to call in once a week to give you a foot massage.”

“How do you feel about someone else doing your laundry? Would it be okay if I come over once a week and wash/sort/iron for you?”

“Give me a call anytime you’re feeling sad or just need to talk. I promise to listen.”

When I was first diagnosed my head was a maelstrom. Questions like “How can I help?” were met with blank stares and desire to blurt out, “Can you cure cancer?” People that found something specific to do were our greatest gift. Even small things like bringing in the mail on the way to visit, washing up cups and saucers after morning tea, emptying the dishwasher or pulling a couple of weeds all made a difference. Small things accumulate and the gesture is as valuable as the practical support.

When it comes to what not to say there’s been some absolute clangers.

First prize goes to Don Chandler, a long time family acquaintance that I ran into while I was out shopping. It was just after my hair had fallen out.

“I thought cancer made you thin.”

For the record, Don, it’s common for people to gain weight during chemotherapy. It’s also bad manners at any time to comment on someone’s weight and even more so when they’re fighting a potentially terminal illness.

As a general rule, comments about personal appearance should be limited to saying positive things. I was okay with “You look good without hair,” but a lot of cancer patients I’ve met would prefer that there’s no comment at all about being bald. From our perspective, it’s easy to forget how strange we look and it’s unpleasant to be reminded. The same goes for people that say “You look well,” particularly when it’s expressed with surprise. Fighting cancer can include looking puffy, bald, strange, rash-afflicted, pigmented, tired, gaunt and miserable.

Here’s my simple rule for comments on personal appearance; if you’ve just called around and caught me hanging out at home then it’s probably best to avoid observations about my appearance. I own a mirror. I know I look strange. If, on the other hand, I’ve spend time putting on makeup and a hat or a wig and dressed nicely to go out then please tell me I look great. It will give me confidence and help me to feel less self conscious.

First prize for compliments on physical appearance goes to Vicki Johnston. She hadn’t seen me for some months and we met at a club where a friend was singing. I’d gone to a lot of effort to look nice and it was the first time I’d worn my wig out in public.  She said:

“Wow, your hair’s come back in nicely.”

Brilliant. She really did look surprised when I told her it was a wig. For the record, telling someone that their wig looks good is telling them that you’ve noticed they’re wearing a wig, which is really the last thing you want to hear when you’re wearing a wig!

Questions can be as problematic as statements. Some people are happy to answer questions about their cancer and their treatment and some people aren’t. You’ll never put a foot wrong if you open with:

“How do you feel about talking about your cancer? Is it okay if I ask you about it?”

And the best, all purpose questions is:

“How are you feeling today?”

Prizes for really awful questions include;

“What did you do to get cancer?”

“Do you smoke?”

“Do you have unresolved anger in your life?”

Yes, I have actually been asked these. There’s already a great deal that’s been written about not blaming cancer patients for their disease. I have mixed feelings. On the one hand I don’t think it’s productive or useful to blame people for their illness while on the other hand I do think that each of us need to use any illness as an opportunity to review the way we live and to make healthy changes.

If you feel the need to blame people for their illness then keep it to yourself. Consider the possibility that your attitude might be a reflection of your desire to feel like you are in control of whether or not you get cancer.  Keep in mind that plenty of people get cancer without having ever exposed their bodies to known carcinogens. Some cancers have a strong genetic link. Remember that all of us have cancer cells circulating our bodies all of the time and it’s the ability of those cells to recruit their own blood supply that determines whether or not any of us get tumours. You have cancer cells too.

It’s also worth remembering that most people live a less than ideal life when it comes to preventing and avoiding illness. If you’re exercising at least three times a week, eating a perfectly healthy diet, meditating, engaged in joyful, rewarding activities for most of your day and a model of mental and physical well being then you get to feel smugly superior (but if you’re that evolved you probably don’t). Otherwise, please keep in mind that the difference between you judging me and me judging you is probably just a matter of luck and timing.

If you have cancer, be gentle with other people. Remember that most people do not wake up in the morning wondering how they can cause offence today. The more prickly you are the less friends you’ll see. Sometimes people are going to say the wrong thing. Consider the whole person and the history of the friendship rather than focusing on a few words in a stressful situation. 

If you cause offence to someone with cancer, just apologise. I’d rather my friends visit and risk putting their feet in their mouths than stay away for fear of doing so. We’re human. We make mistakes. Please know that most people don’t have a script in their head that you need to guess at. Cancer can be very isolating. If we look odd we might be avoiding social contact. If we’re having chemotherapy we might be avoiding infection. At any stage of treatment we might just be too tired to head out into the world. As long as you check first before visiting and know how to avoid outstaying your welcome you’ll be fine. (Hint; open with “How are you feeling today? How long would you like me to visit?).

I’ve particularly enjoyed trips away from home with someone else driving. I’ve been taken walking and to the movies. I’ve had a couple of trips to unpopular shopping centres (less crowds) and some great meals at out-of-the-way cafes. It’s been great to just get out of the house for while.

I’m most grateful to the friends that have hung in there for the long haul. When you’re first diagnosed there’s a flurry of cards and flowers but a lot of people then go back to their own lives. I’ve been very fortunate to have friends that keep me in their minds and their hearts. Last weekend we had two close friends turn up with fresh fish, salad, a smoker and chocolate for dessert. They made us all dinner, shared their endlessly entertaining company and then cleaned up afterwards.  They never worry about saying the right thing.

Perhaps the most important thing to say to someone with cancer is this;

“I love you.”

Assuming, of course, that you love them.

Cancer reminds us that life is finite, unpredictable and precious. People we love can die suddenly, or become very ill and die slowly. Most people I know that have lost a friend to cancer say that they are glad they got the chance to tell that person how important they were to them. Cancer opens the door to this kind of honesty. It’s one of cancer’s gifts.

So if someone you love is diagnosed with cancer, tell them that you love them. Tell them why they are important to you and what kind of impact they have had on your life. We are staring down the barrel of our own mortality and knowing that we have touched the lives of others is perhaps our greatest joy.