Goodbye my friend

My friend, Ricki Hayes, had lost her long and painful battle with triple negative breast cancer. I will miss her.

Death was expected. I received a message from her beloved and endlessly supportive husband of 37 years, Terry, on the 28th of December. She was in pain which the doctors were managing “as best they can” and it seemed she only had a few more days. My sadness at her passing is tempered with genuine relief that she is no longer in pain. I nursed my father during his lost battle with cancer and I can appreciate how distressing this last ten days must have been for Ricki and her family.

I met Ricki through the Breast Cancer Network Australia (BCNA) site when I started sharing some of my blog posts with other women dealing with breast cancer. Rick was a long term survivor and still spent time on the site offering support and encouragement to other women. She started following my blog and was often the only person to comment on something I had written. On days when I contemplated abandoning it all, it was Ricki that encouraged me to keep going, to keep writing. “You put into words what so many of us are struggling to say.”

It was Ricki that first suggested I should write a book about dealing with the fear of recurrence that plaques people living with cancer, and people dealing with life after cancer. I am certain I would never have written it without her encouragement. She was the first person to receive a final copy of the book.

Rick described herself to me as “ordinary”. She was a devoted mother and grandmother, a loving wife and like so many women, she wore many other hats. Her career as a teacher earned her a legion of loving ex-students and her involvement in her church gave her a community of faithful friends.

Her commitment to helping other women with cancer went beyond the online support she so frequently offered through BCNA. She volunteered to allow researchers to test new drugs and methods on her. “If being their guinea pig can save someone else then that’s enough for me,” she told me. She was also an active online advocate for a host of important issues, including marriage equity, access to medical cannabis and the PBS listing of potentially life saving cancer drugs, including Keytruda, that are currently too expensive for most people. She talked openly about what life with metastatic cancer was like, and supported so many other women going through a parallel experience.

When Ricki knew she had reached the end of her treatment options and that a slow decline into death had become inevitable, she sent me a short message to let me know and I wrote back expressing my sympathy and support. I am still struck by her reply. Here it is:

Thanks for your calming words Meg. As I was showering …(.best thinking place without distractions and love the sound of running water!!!) how liberating I felt knowing I could spend time and energy on ‘living’ rather than always feeling as if I was fighting an enermy/ pushing through nausea etc 😊 I know there will be days that are tough….thats part of normal life anyway, but the feeling of liberation the I have today far outweighs anything else. I have been and are blessed in SO many ways, how dare I complain when there is so much suffering by those who are displaced by war, greed and the push for power.

I’ve had the excitement of adventures at home & overseas; the privilege of study and encouraging little minds to delve into the future; to feel suffering so I can better understand and walk with others who are there; but mostly I have known so much joy and that is what I wish to focus on. My family, my friends near and far, my environment … wherever I find myself each day….the other things I cant control so I’ll leave them to those who specialise in them!

Real freedom comes when we truly realise and accept the inevitability of life. Then we can begin to live!

Thank you for your support encouragement, knowledge, friendship and love.

I would not have been at all surprised or critical if Ricki had been despondent or angry at the news that there was nothing other than palliative care available to her, but here she was rejoicing. Life was wonderful. She was going to keep living every second of it, right up until the point when she couldn’t. Her compassion for others and her love for family and friends was always at the heart of who Ricki was, and that’s how I’ll remember her.

Real freedom comes when we truly realise and accept the inevitability of life. Then we can begin to live. Yes. YES. We are all dying. When we come to understand that, all the way down to our temporary bones, something wonderful happens.

In early November I headed down to Sydney for what I knew would probably be my last visit with Ricki. She had sent me messages about the pain she was experiencing and the endless rounds of radiation they were giving her in an attempt to reduce some of the tumours. I expected to see a frail shadow of my friend. Instead I was met with laughter and jokes about dying. Surrounded by flowers, Ricki told me that her dearest wish was to have one last Christmas with her family. Terry tells me they spent it going through photos and enjoying happy memories together. I’m so glad she got her wish. She went downhill quickly after Christmas. I suspect she had been hanging on by sheer force of will but Ricki would no doubt want me to credit God.

Making friends with other people dealing with cancer is fraught. On the one hand, you have so much in common, and on the other there is a reasonable caution about forming close bonds with someone that clearly has a life threatening illness. Will we come to care about each other only to grieve? I would not have missed the opportunity to become Ricki’s friend. We have been through some rough times together and sometimes the only person that can really understand the internal landscape of cancer treatment is someone that has travelled it. The black humour is too much for the uninitiated and our desire to spare our families our darkest thoughts makes these kinds of friendships very special. At one point it looked like I might die before Ricki. Her friendship never wavered.

This is real friendship. Holding tight to each other when you know that death might be just around the corner. Sharing messages of support like notes passed under a desk in a classroom when you know that those messages might be uncomfortable or confronting for others. Fiercely hoping, sometimes against the odds, that survival is possible and ultimately, accepting death with the joyful grace that Ricki has taught me. I will live a better life for knowing her. I will die a better death.

Farewell my dear friend. My heart goes out to your precious family, particularly Kathryn who is so like my Zoe. You will live on in their hearts and in mine.

I wanted to say you were anything but ordinary. I don’t want to contradict you. Instead I will say this; you demonstrated that an ordinary life can be a very extraordinary thing. All my love and gentle hugs.

 

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Foobs

On the 8th of August 2013 I had both of my breasts surgically removed. My ‘breast conserving’ treatment for triple negative breast cancer had not been successful and pathology on the most recently removed slice showed active invasive cancer. For various reasons (I’ve detailed these previously for anyone who is interested) I chose not to have any kind of reconstruction. I also chose to to worry about wearing any kind of prosthetic device to give the appearance of breasts.

Fake boobs (aka ‘foobs’) were something I was always prepared to consider, but initially my huge wounds from my F cup breasts meant I was much more comfortable without a bra and by the time I healed I had noticed something very surprising: Most people didn’t notice I’d had my breasts removed! For those that don’t understand sizing, and F cup is almost a kilogram of breast tissue. Think grapefruit sized. Big grapefruit sized. It still happens occasionally; I run into someone I haven’t seen since before the surgery and when I tell them they suddenly look at my chest and gasp. It turns out, we mostly look at people’s faces and not their chests.

I suppose my years of yoga played a part in my decision. Thanks to strong chest muscles I didn’t have the concave appearance that can be an issue for many women post-mastectomy. I also spent some time choosing clothing that suited my new look. After years of wearing a bra I rejoiced in the comfort and freedom of not needing one. I gathered an impressive collection of scarves and loose structured jackets. I figured out that handkerchief hemlines and low-cut necklines needed to go, but slim line skirts and pants, shoulder detail and cowl necks were suddenly flattering. I was happily ‘flat and fabulous’.

It came as a surprise to friends when I decided to try foobs. My first attempts involved the soft forms and bra I was given post surgery. These rode up and looked like I’d borrowed the breasts of a teenager. I also found myself adjusting them and worrying about them falling out at inopportune moments. Boob soup anyone? My decision to try them at all was prompted by my experience shopping for formal wear. My daughter is getting married next year and as mother-of-the-bride I’m going to need to get into some kind of glorious frock. The formal wear choices for flat-chested women are not impressive. A flattering chiffon pants suit was deemed ‘too casual’ by my daughter and the beaded silver dress I already own and love looked strange. What you notice most in fitted clothes when you don’t have boobs is your tummy!

I was also aware that while people look at your face in real life, photos are a different matter. I decided to get professionally fitted for prosthetics. I didn’t book anything or make any plans, other than thinking I would get around to it before the wedding in June 2018.

Recently I had my final visit with my oncologist. That means I’m four and a half years since diagnosis (woohoo!) and I only have one visit left with my surgeon before I am officially at the end of treatment. My oncologist still looks at me with disbelief, wondering how I managed to survive what I now know was a likely death sentence. She smiles and shakes her head and tells me to just keep doing whatever I have been doing. I give her a copy of my book and she hugs me.

After this appointment I find myself in the city, feeling like I should do something to mark this milestone, and it occurs to me that I am close to Leila O’Toole, the specialist supplier and fitter of breast forms and post-mastectomy lingerie. I’d read great reviews about them following surgery. I look them up on my phone and nervously give them a call, half expecting to be told that I need to make an appointment well in advance. A very pleasant woman on the phone tells me to come right over.

I negotiate the very slow and crowded lift to arrive at their suite of rooms on level 8 of the Dymocks building in Sydney. There are four or five women of various ages, including one gorgeous young woman with bright purple hair. Pauline is closer to my age and shows me into a fitting room. She needs to look at my chest to know how to fit me, and runs a tape measure around me. We discuss size and both agree that I do not want an F cup. The real ones were heavy and sometimes cumbersome. Something smaller that suits my body shape please.

The first bra and prosthetics look fine to me. Okay, it looks like I’m wearing fake boobs but I expected that. It’s an odd feeling to be back in a bra after all these years. Pauline has what is obviously her standard spiel about how wearing foobs (she calls them ‘breast forms’) will help my balance and posture, and how most clothing looks better with them before adding, “Well let’s be honest, all clothing.” When I tell her it’s been over three years since my surgery she’s shocked. Somehow I’ve managed to dress myself and not to topple over without them! I know she means well and I’m sure my circumstances are unusual. I’m guessing they usually see people soon after surgery or not at all.

Pauline recommends I try the next size up. Visually there doesn’t seem to be a lot of difference but the minute I put these on I can see the improvement. A good prosthetic should sit naturally against the chest. If I put my hand on my collarbone and slide it downwards there’s a very natural slope from my chest muscle to the prosthetic. I put a cotton singlet on and I am startled by how real these look. It is clearly worth being professionally fitted.

The breast forms are silicone with a microfibre backing. They are designed to also be used by women that have only had one breast removed which means they weigh what breasts would weigh. The feel a bit like memory foam and are pleasant to touch. Pauline tells me that the forms will also protect my chest and I appreciate this. It can be risky to hug people, particularly if I’m wearing chunky jewellery, and foobs will give me some protective padding.

The bras are designed with nice wide sections on the straps so they don’t dig into the shoulders (why couldn’t I get bras like this when I had breasts?) and have a pocket sewn into them so the foob doesn’t fall out. Once they are in the bra, you can move them about a bit until you’re happy with how they sit, just like you would your own breasts.

I leave with two breast forms and two bras. The first is a practical, cream coloured bra that will be smooth under t-shirts and the second is black and lacy. Pauline asks if I’d like to leave the black one on. I decide to surprise my husband by wearing it home.

I’ve now taken the foobs out a few times. I’ve noticed that once they have been on for a few hours my body strangely registers them as part of me. I suppose after all those years of having breasts this in not surprising. Of course they are numb, but then surgically reconstructed breasts are numb too. The other thing I’ve noticed is that people still don’t notice. I had a get together with some brilliant women recently and towards the end of the day I asked what they thought of my prosthetics. Once I drew attention to them there were lots of compliments along with requests to touch them (but not in a creepy way!). There was general agreement that they look very natural. There was also unanimous agreement that, although we’d been together for several hours, nobody had noticed them until I pointed them out. This never ceases to surprise me. One woman commented, “I knew something was different but I thought maybe you’d had your hair cut.”

Wearing foobs comes with all the inconvenience of wearing a bra. In hot weather they are as uncomfortable as the real thing. I’m glad I can take them off. I’m also happy to have the option of not wearing them when I’m doing yoga or working in the garden. The real ones were a bit of a nuisance in both circumstances.

Having seen the difference a small change in size can make to the appearance of foobs, I now marvel at the skill of surgeons that provide alternatives from body tissue or silicone implants. I can understand why many women have a number of revisions (additional surgery) when a small difference in size can have a significant impact on appearance. I remain very happy with my personal decision not to put my body through that. I respect any woman’s decision to go down that path, but having perfectly sized foobs that I can take off at the end of the night is definitely a better option for me. So is just being happy in my own skin and not wearing a bra.

I think of my foobs as being like any other fashion accessory that I use when I dress up. I won’t be wearing them all the time, any more than I would wear high heels or dangly ear-rings, but it’s nice to have them as part of an outfit when I choose. I can see what Pauline meant about some outfits just looking better with a bit of a curve at the chest. I don’t agree that this is true of all outfits. There are plenty of naturally small-breasted women on the planet and lots of beautiful clothing designed for them.

If you’re considering foobs then I would recommend a professional fitting. Some areas have a mobile service that will come to your home. The full cost of the breast forms was refunded by Medicare (the government health fund in Australia) and my private health insurance (Medibank Private) covered $70 towards the cost of each bra. The government will cover me for a new pair of breast forms every two years. I might try some of the light weight forms for swimwear next time. Leila O’Toole also have a wonderful selection of swimwear and I admit it has been particularly difficult to find nice swimmers. I wonder if mastectomy swimwear is covered by my health insurer.

Caring for breast forms is simple. “Wash them like you would your own skin,” advises Pauline. “We like to keep it simple.” The front of the form is silicone and will towel dry. The microfibre backing takes a bit longer. If you’re any where near Sydney and would like to meet a great team of people with excellent product range and knowledge then I’d happily recommend Leila O’Toole. Here’s a link to their website. Once you know your size you can also mail order from them.

Leila O’Toole

Are you wondering how my husband reacted when I arrived home? He noticed I was carrying a very large unmarked shopping bag (foobs each come in a large storage box to hold their shape) and asked what I’d bought. “It’s a surprise,” I told him, “I’ll show you when we get home.” Yep, he didn’t notice that I was wearing foobs. Not when he hugged me, not when I put the seat belt on and not until I actually took my shirt off when we got home. When I asked him why he thought he didn’t even see them, he said this: “I don’t see you as parts. I love all of you. I just see all of you. You’re always beautiful to me.” He’s probably a huge part of why my recovery did not require foobs.

Second Mona Lisa Touch Treatment

Yesterday was my second round of laser treatment for vaginal atrophy. The procedure was much like the first but I was a lot more relaxed now that I’d been through the whole routine before.

The doctor asked about my response to the first treatment. There’s no doubt that I’ve had good results. I’m much less dry and a lot more comfortable. I’m having what I think of as the toothache response, where you don’t appreciate how much something was bothering you until you find relief.

The observable differences after the first treatment included an end to leaking following urination. For me, this was enough to justify the cost, but the benefits included better vaginal lubrication and relief from the residual tension I hadn’t noticed my body had been holding in response to feeling like I had sand caught in my swimmers.

I was surprised to notice that having better vaginal lubrication also improved my libido. I suspect that my body, recognising that intercourse was likely to be painful, had shut down whatever part of the system makes me interested in sex. I also made the observation that my mood generally was much better. I had underestimated the impact of a poorly functioning vagina on my emotional state.

For the second treatment the doctor spent a bit more time on the entrance to my vagina and to the exterior labia. This is more uncomfortable than the internal treatment due to the increased nerve endings in this part of the body. I commented that the pain level was similar to having hair removed using wax strips and the doctor replied that this was a common observation. It stings, but not for long.

Post treatment I was advised to use sorbolene externally to reduce stinging during urination. I was very glad that I’d purchased some on the way home because ‘stinging’ turned out to be a painful burning sensation. The sorbolene relieved it instantly. If you’re having this treatment then it would be worth buying some in advance. I’d recommend finding plain sorbolene in a pump pack and avoiding anything with perfume or additives as this could irritate sensitive skin. A pump pack makes it easy to apply and you don’t have to worry about getting the lid back on.

My other tip would be to dress warmly on the top half of your body for your treatment sessions. For reasons I don’t understand, most gynaecologists wear suits and adjust the temperature control accordingly. This time around I was much more comfortable in a soft jumper, even though it was a fairly warm day.

My second treatment cost $350 with a $90 rebate, so I was $260 out of pocket. Given the improvement I’ve observed I consider it money well spent. I have one more treatment in a month’s time and then I will only need occasional top up treatments. There is no way of knowing how often I’ll require these and the doctor tells me that it varies from annually to every three months. I’m already certain that no matter how often I need them, it’s worth it.

I am also grateful to be in a position where we only need to cut back a bit of spending in a few places for this to be affordable. I am aware that for many, many women it will just be far too much money, particularly if the finances have already taken a huge hit following cancer treatment.

I’ve been spending the last month contemplating the fact that men can obtain viagra at a government subsidised price (at least in Australia, where I live) because there is recognition that erectile dysfunction is not just about the ability to maintain an erection. It’s also something that has significant mental health repercussions. How is vaginal atrophy any different?

I appreciate that there’s an argument for making treatment available to breast cancer survivors based on the same arguments used to justify government subsidised reconstruction, but I don’t think the subsidy should be restricted to us. Anyone having chemotherapy is at risk of early menopause and vaginal atrophy, not just those of us receiving treatment for breast cancer.

It’s also worth considering that all post menopausal women are at risk of this condition, regardless of their cancer status. As the doctor observed on my first visit, it’s only cultural attitudes that prevent us from treating this as a serious health issue. Why is that, and how can we shift those attitudes? Why is it important for men to maintain sexual function, but not women?

The doctor also observed that sexual function is not the most important benefit of this treatment, which is saying something, considering how significant this benefit is for many women. Vaginal atrophy also predisposes women to a much higher rate of urinary tract infections, prolapse, urinary incontinence and just day-to-day discomfort.

I was pleased to see a current university study into the Mona Lisa Touch therapy. I’m hopeful that the results will validate what so many patients already know. This is a non pharmaceutical treatment with significant benefits and few side effects. It should be better known and more widely available at an affordable cost.

So far, I’m impressed. I’ll report back next month after my final treatment.

 

 

First Mona Lisa Touch Treatment

Today was the big day. I was fortunate to be able to book in early for my first Mona Lisa Touch session, due to a cancellation. I’ve spent some of the last week reviewing comments on other sites about it and by 4.00pm today I was feeling mildly excited about the whole thing. The main objection seems to be cost, and the need for ongoing treatments. Results vary from good to excellent. Some women report pain, and some don’t.
You know that thing that happens where you finally admit you have a problem and suddenly you start to notice it much more than you used to? I’ve had a week like that. I suppose the long, slow decline into significant vaginal atrophy has beens so gradual that I have just accommodated the discomfort. All I’ve been able to focus on this week has been the sorry state of things, and the possibility of recovery. Today couldn’t come soon enough.

I was shown into the treatment room and asked by the assistant to strip off everything below the waist. “You can keep you knickers on until the doctor arrives if you like.” I didn’t see the point but appreciated the courtesy. I sat in the treatment chair and spread a cloth across my lap. A few minutes later the doctor arrived. He took some individually packaged items out of a cupboard and put his disposable gloves on, before explaining to me that the first treatment was usually the one people found a bit uncomfortable, mostly because of the unfamiliarity of the process.

The doctor attached a metal rod about the size of a tube of toothpaste to the end of a cord attached to a mechanical arm. He held his hand behind the tip of the rod so that I could see the red laser against his glove. This was what would create tiny blasts against the walls of my vagina, causing the skin to rejuvenate. It looked a bit like the laser toys you use to amuse cats, and I avoided making pussy jokes. Next, the doctor explained that the device would vibrate and that the procedure sometimes resulted in some smoke and a burning smell so he’ll be using a small vacuum. The humour potential of this procedure is apparently endless. Determined to have a smoking hot vagina, I scoot down and put my legs in the stirrups.

I’ve watched the video of this procedure before coming in today and I highly recommend it. Knowing what is about to happen certainly reduces any anxiety. You can view it on Dr Metawa’s site here:
https://drmetawa.com.au/web/index.php/gynaecology/vaginal-atrophy.html

There’s some pressure as the rod is inserted, but no more that you would feel with a speculum during a pap smear. Probably less. I’m asked to take a deep breath and to let it out slowly. Once the rod is inserted, the doctor asks me if I think there’s any more room and I suggest he can probably go a bit deeper. I am once again impressed by his determination to minimise any discomfort to me.

The procedure starts and there’s some clunking noises from the machinery, a mild vibration from the rod and the faint odour of burning skin. It doesn’t feel unpleasant and I am not in any pain. I did take two Pandadol about an hour before the procedure, just as I would with leg waxing or any other minimally painful procedure. I know that the laser is making tiny incisions into the walls of my vagina but I can barely feel it.

After about five minutes the doctor tells me that we are half way, and that I may find the sensations more intense as the skin towards the opening of the vagina is more sensitive. I start to feel some stinging, but it’s mild and certainly less that the pain of waxing or laser hair removal. As predicted, the intensity increases at the opening of my vagina and there are a few hits to the vulva that sting. If you have every pulled out a stray pubic hair with tweezers, that’s close. A bit of an ‘ouch’ but nothing too serious. I’m smiling and chatting. It’s all good.

The whole procedure is over and done in about ten minutes. There is no pain or discomfort once it’s finished. I’m told not to put anything in my vagina for five days and to expect a kind of watery discharge which may show signs of blood for about three days. All this is normal.

I was told the procedure would cost $200 with a $90 rebate but there’s also a $150 consultation fee, so $350 all up with $90 back on Medicare means I’ve paid $260 for today. I have two more treatments to go, each a month apart. I think it’s money well spent.

To put the cost into perspective, I know people that spend $300 a month at the hairdresser, or the beautician or the manicurists. Personally, I don’t balk at spending at least that amount on regular massages and yoga classes. It’s all about priorities. I’m hoping to reclaim comfortable intercourse with this procedure (and it would be worth it for that alone). I’m also expecting it to restore my ability to urinate without it going over my thighs and to be able to stop urinating without it continuing to leak. As a side benefit, I will be able to use toilet paper again without leaving a trail of confetti behind.

As I drive away from the doctor’s surgery I have a pleasantly warm sensation in my vagina and vulva. It feels a lot like the last time I had great sex. There is no pain two hours later as I write this, but I’m feeling hopeful and happy. I heard from one woman who said she needed to sit on ice packs for three hours after her treatment. I don’t know if this is something to do with her anatomy or something to do with the skill of the operator. I simply acknowledge that my absence of pain might not be the case for everyone.

It’s too soon to tell how much impact my first treatment has had, but already I feel a lot more comfortable. Things feel normal again, rather than dry and stretched. This is a good sign. There’s a mild stinging when I urinate but it’s brief, and there’s enough blood to wear a panty liner.

I’ll update in a couple of weeks when the results should be evident. I’m feeling optimistic.

In other news, my yoga teacher has asked me to do a trauma workshop with her and to lead some of the exercises from my book. I’m honoured and excited. There are also two psychologists and a doctor that have told me they plan on recommending it to their patients and a local oncology massage practice have a sample copy on display. I had great feedback from a lovely woman this week. Here’s the link again for anyone who’s interested:

https://www.amazon.com/dp/1521249377?ref_=pe_870760_150889320

 

 

 

Let’s have another conversation about vaginas

Following on from my last post, today was my first appointment with the gynaecologist to discuss vaginal atrophy. By a happy coincidence, it turns out that Dr Metawa is one of the two doctors that introduced the Mona Lisa touch therapy to Australia. He tells me that when he first started offering it, he contacted many of the cancer groups. It is his view that this treatment should be offered a a routine part of cancer treatment where menopausal symptoms are often induced. He shakes his head and tells me that they were skeptical and didn’t believe the therapy would work.

Since then it has become more broadly available and the cost has come down, but it is still too expensive for many people. I tell him my story, about my GP telling me I had vaginal atrophy and not bothering to let me know about laser therapy. “It’s cultural,” he replies in his clearly not-Australian-born accent. “In Australia there is a great reluctance to talk about vaginal health.”

Why is this? The doctor explains that vaginal atrophy results in the slow collapse of the vagina, often leaving women with symptoms of urinary incontinence, higher risk of urinary tract infections, higher incidence of prolapse (where inside bits become outside bits), and in some cases, irritation or pain so sever that patients have trouble walking. But we’re Australian, so let’s not talk about vaginas.

Then, of course, there’s intercourse, which we also don’t like talking about unless we’re using it as an analogy for something being broken. We have not trouble at all saying something is ‘fucked’ but we cringe at any conversation about actual intercourse and whether or not it’s still comfortable. I know, I’m generalising here and those of us from backgrounds like nursing or policing sex crimes are much less squeamish. Even so, I cannot recall ever having a single conversation with a girlfriend about our vaginas.

Dr Metawa thinks that discomfort during intercourse is the least significant issue when it comes to vaginal atrophy. He’s not diminishing the importance of my sex life. He says this in a way that means “There are so many other terrible things that come with vaginal atrophy that this is way down the list.”

The doctor ushers me into his examination suite and gives me some privacy while I take off everything below the waist. He returns after knocking, and asks me to put my legs up into the stirrups. He tells me that I’ll be able to follow the examination on the television screen attached to the chair, if I wish. Sure. Why not? Let’s have a good look at vaginal atrophy.

He turns on the camera and tells me that, of course, the image of my vagina is magnified. “Oh that’s good news,” I respond, “Or I’m in real trouble!” He chuckles like he’s never heard this one before and I decide I like him. Next up, vivid colour images of my vagina. (I can’t help noticing I’ve got a grey hair) and  the good doctor confirms that I have advanced vaginal atrophy. He explains that the vaginal birth of my daughter, twenty four years ago, stretched the skin and that’s why it has taken so long after chemotherapy for the atrophy to become apparent. If I’d had a caesarean birth, or never had children, it would have turned up sooner.

Dr Metawa advised me that I am a good candidate for the Mona Lisa Touch Therapy. He’s pleased that I’m not on any anti-oestrogen medication as this can make atrophy much worse, and treatment not as straight forward. He still treats women on anti-oestrogen medication so if you are in that category it is still worth seeing someone about this treatment.

I’m booked in for my first session on Friday. I’ve been warned that this one can be uncomfortable, and even painful, because the vagina is dry and the walls are thin. The good news is it will be all uphill from here, with little or no discomfort for my second and third treatments over the next couple of months. Once the three treatment are completed, the doctor will assess the condition of my vagina to determine if tone has been restored. I may need one more treatment. I am told I can expect a full recovery from the atrophy. I will not need to use any lubricant, inside or outside my vagina and I can also expect the associated incontinence issues to resolve.

Once we achieve OV (my abbreviation for ‘optimal vagina) I’ll have a followup at three months and then another at six months. After that, I’m told it’s best to just monitor vaginal tone and to book in for a top up as needed. “Better to have one treatment sooner than several later.” This seems like good advice. Some people only need one top up a year and others need two or three. Vaginas are all different.

There’s no doubt that this is a significant investment. I think it’s entirely worth it, particularly as I now know that without it I can expect “full collapse” of my vagina. I’ll post again after my first session on Friday.

Why didn’t I know about vaginal atrophy?

There’s a long list of things nobody warns you about when you go through cancer treatment. It is fairly well known that chemotherapy, radiation therapy and significant surgery all carry risks and side effects but when your life hangs in the balance most people will agree to anything. I did.

My biggest shocks were the residual peripheral neuropathy, the brain fog, the extent to which losing my nipples impacted my intimacy, and the way chemotherapy slams you into menopause. Think ten hot sweats a night that are so bad I needed to keep towels under me and change them.

The neuropathy has been accommodated. It’s just like having mild pins and needles in your hands and feet and as long as I keep warm it’s not too painful. The brain fog has taken some work, but I have recovered my pre-cancer brain. The hot sweats have subsided to one or two a night and they are much less sever. I have grieved the loss of my nipples. Acceptance is the only help there.

My last visit to the GP included a regular pap smear. ‘You have evidence of vaginal atrophy’ he told me in that voice that sounds like he’s reporting the weather. Cloudy with a chance of incontinence and infection. I’d never heard of it before. It’s apparently a common side effect of menopause and like all other treatment related symptoms, it has arrived with a vengeance.

I hit the internet (of course) and discovered that vaginal atrophy can make intercourse difficult and painful, urinary incontinence more likely and can also increase the incidence of thrush and urinary tract infection. Oh joy! I also noticed something that wasn’t anywhere on the internet. It’s really difficult to find a toilet paper that doesn’t suddenly shed and leave a residue. This product is obviously designed for a self-lubricating vagina and nobody has thought to let manufacturers know about post-menopausal difficulties with their products.

The usual treatment for vaginal atrophy is apparently some kind of hormonal cream or hormone replacement therapy, but having had breast cancer (even the non-hormonal kind) my doctor wasn’t keen. He recommended a non-hormonal vaginal lubricant available from the chemist. It’s inserted using a plastic tube every three or so days. It costs about three dollars per tube. Unfortunately it doesn’t reverse vaginal atrophy. It just makes things a bit more comfortable. It is also sticky and might all come out at once when you least expect it. It’s better than nothing but not ideal.

One site I found recommended sex or masturbation on a daily basis. Ah the bitter irony that menopause chews up libido and spits out sexual activity as a treatment for side effects. My previously healthy interest in orgasms has been reduced to an occasional distraction. My husband and I are still loving and affectionate but like so many others in our position, intimacy has become more important than intercourse.

Meanwhile, my ability to urinate has become complicated. Clearly good vaginal lubrication was part of the whole process working properly and I now find myself trying to figure out how to keep the flow heading downwards and not across my thighs. I know this is odd and perhaps distasteful stuff to write about but that is exactly why I’m going there. It’s good to know you’re not alone.

Recently I was looking for a good gynaecologist (for someone else) and came across an article about laser therapy for vaginal atrophy. The same technology that is used to improve your wrinkles can be used to improve the tone and thickness of the vaginal walls. After months of enduring the slow collapse of my vaginal tone I headed back to my GP to ask him about it. “Oh yes, apparently it’s quite effective,” he tells me, as I resist the urge to growl at him for not giving me information about this treatment six months ago. Does he just assume I don’t plan on using my vagina anymore?

The treatment is marketed in Australia as Mona Lisa Touch Therapy. I’m amused to think that it’s supposed to give me an enigmatic smile as well as a return to vaginal health. It will involve an initial visit with a gynaecologist to determine if I am ‘suitable’ for the treatment at a cost (after rebate) of around $170. If I’m approved as suitable, each laser treatment will cost (after rebate) around $260. I should see some improvement after the first treatment but for the optimal result three treatments are recommended. I haven’t checked, but I’m guessing my health fund will not pick up the slack. I still think it’s worth having. I’m booked in for my initial visit next Monday.

I’ll keep you posted on the results.

Dying to Know Day

In Australia, the 8th of August is ‘Dying to Know Day’. It’s a concept that a lot of people find confronting. People are encouraged to host events where they sit around and talk about, well, dying. Here’s a link:

D2KDay

I first became aware of it about six or seven years ago. I met someone on a course who was involved in organising a kind of coffee-and-nice-chat-about-death event. At the time I was both surprised and curious. I didn’t have any objection to talking about death but I didn’t understand why we needed a day for it. She explained that some years before she had experienced the still birth of her first child. The event had left her devastated in a way that I am certain can only be understood by a woman who has lived through nine months of pregnancy and expectation only to be given such crushingly sad news.

She told me that one of the most difficult things was finding anyone prepared to talk with her about the death of her baby. People shut down, stayed away or changed the subject. This not only left her feeling isolated and unsupported, but feeling as if her child’s death meant nothing to other people; that it was best to just pretend she had never existed at all.

The Buddhists have an interesting approach to death. They believe that until we can honestly face the reality of our own existence (that we must all die) we cannot live a fulfilling life. They make the observation that those who have faced death, and understood the finite nature of all things, have a deeper appreciation of what really matters.

I agree.

I worked as a police officer for many years. I saw more deaths than I can remember. All kinds of death. Babies that mysteriously stopped breathing, people that had been the victims of violence (often at the hands of someone they loved) and those that just happened to be in the wrong place at the wrong time. I’ve seen the bodies of very old people that passed away in care facilities with only a drawer full of possessions and I’ve seen the incredibly privileged and wealthy looking just as dead.

I’ve learnt about the death rituals of a handful of different cultures so that I didn’t cause offence. Some of these are very moving. The Jewish people all occupy a simple, rope handled coffin made of pine or particle board when they die. It’s a symbol that no matter how rich or clever or famous we were in life, we are all equal in death.

So you would have thought, having spent so much of my working life dealing with it, that death had no capacity to shock me.

And yet, when I received a diagnosis of a potentially terminal illness I went into shock. Of course I understood that I would die one day, but one day had always felt like it was a long way off, and that there was plenty of time to figure everything out when I got closer to it.

There are so many reasons why we need to talk about death. There’s the practical stuff, like how we feel about organ donation, and whether we’re okay with cremation. There’s the personal stuff, like what we want to have happen at our funeral and who we’d like to receive any accumulated wealth or possessions. These are the relatively easy conversations.

The more difficult ones are about where we would like to die and how we would like to die. Australia has a shortage of hospices and almost no support for those wishing to die at home, and yet most Australians do not want to die in a hospital. Hospitals are places where people go for treatment, where they get their recovery monitored and their drugs administered. They are not designed for dying. When more of us start thinking and talking about where and how we would like to die, this situation will improve. We’ll start talking to politicians about better funding for death services, so that we can have the kind of death we choose.

We might even see a change to laws that prevent people from seeking medical assistance to end their lives. I respect the opinions of those that would never make this choice and I understand all of their opposition to assisted dying. I promise to never force anyone to make that choice against their will, or their faith. I also ask them to extend to me the same respect for my own beliefs. I’ve seen what death from cancer can look like. I have no fear of death, it’s dying that terrifies me. I would like to be able to legally ask a doctor to speed that process up if I find myself caught in a low, slow, humiliating decline towards an inevitable outcome. It’s okay if you don’t agree with me. Just please don’t condemn me to the agony my father endured.

Death is frightening. By avoiding it we can stay floating in that delusional bubble where we behave as if we are going to live forever, and that’s precisely why we need to have the conversation. Life is short. None of us know the time or the manner of our death.

I contemplate death on a fairly regular basis now. I dodged a bullet, for now, but somewhere in my future there’s is another one with my name on it. There’s one for you too. Knowing this had made me very particular about how I spend my time. It’s much easier for me to be clear about who is important to me and what I want to do with whatever is left of my life. Death is helpful for that.

And so on the 8th of August I would invite you have a conversation with the people that love you about death. Talk about your death, and their death and whether or not any of you have ever seen death. Talk about where and how you would prefer to die and who you would like to be there (assuming you get a choice). Talk about the practicalities but don’t miss the opportunity to have a deep and honest conversation about why we don’t talk about death more often.

And why we should.