Within another year I had to take a proactive response to my thinning ‘skin’ and tried the MonaLisa Touch: a laser treatment for vaginal atrophy (the treatment came into being because allegedly half of all women eventually experience this). One female gynaecologist’s website said it was pain free, which is rubbish, as my male gynaecologist lathered me in topical anaesthetic before using the metal, tubular probe. You walk out of the rooms with a pad in your pants like you’re a menstruating woman again, complete with spotting.
My gynaecologist was in communication with the Italian developer of the probe about designing one to reach the scar tissue left behind in a woman’s vault (the real term) when the cervix is removed during a radical hysterectomy. Currently, the laser goes sideways along the canal of the vagina, but doesn’t hit the end, which I needed because that was where my particular pain was coming from. He thought a nerve might have got trapped up in the scar tissue. He’d performed laparoscopic surgery on women – going in and recutting the vault closing to help his patients maintain the ability to have intercourse.
From what I know, the MonaLisa Touch came about during a gynaecological plastic-surgery conference in Italy. Scientists and gynaecologists got talking about laser treatment for taking wrinkles out of rich women’s faces. One man asked the question What about putting wrinkles back in? – thinking this might work in a woman’s vaginal walls. And that’s what the MonaLisa Touch does. It stimulates collagen in your connective tissues to put folds (rugae) back into the wall, so they’re flexible and develop normal mucosa again – all things a functioning vagina needs.
So I put my hand up to be a guinea pig for the external probe, which normally does the labia only but could be trained straight ahead, and therefore hit the end of my vault, where the scar tissue lay. I did a lot of calm breathing and sweating as the gynaecologist worked this odd-shaped probe into me to reach the scarring in my vault. The process included me with a hand mirror checking out the white spots left behind after the lasering.
Imagine a thick circular probe that goes square and has two tongs on the end like you’d use to carefully flip tofu on a BBQ, and that’s what I got up me. I actually felt a vaginal achievement on walking out of the procedure – my adrenaline waning.
But what of the vagina at the end of all these breast cancer treatments?
I met a breast care nurse and survivor who’d received a Churchill Fellowship to study survivorship issues in America. She put me on to drinking a capful of apple cider vinegar in water every day. She too noticed, after treatments for breast and gynaecological cancer and being on Arimidex, that she didn’t smell the same. Her pH was out. Mine too. No longer.
The rabbit hole of sexual intimacy post–aggressive cancer treatments was and generally is not discussed by medical professionals advising you, the patient, on everything that will keep you alive. As survivorship increases, wonderfully, so too will the numbers of women (young to old) living with cancer as a chronic disease or with no sign of disease. This leaves a gap of care for those who want to live well post-cancer.
In my undergraduate study, my lecturer in philosophical psychology described the female orgasm and how the cervix pulsed in and out of the vaginal canal like a chicken picking up seeds (read sperm) off the ground. Chicken-beak analogy aside, orgasm quality is reduced, quite a bit, by having your cervix removed. No one talked about this. I couldn’t find it in medical literature, or in breast cancer stories. Why is the vagina and women’s sexual use of it so omitted? If a man’s testicle is removed or his penis operated on, there’d be a lot of conversation about sexual function. Not so for women. Yes, our sexual organs are ‘hidden’ from view, but does it go deeper than this?
Women’s sexual desire isn’t as important perhaps, or rather talking about women and their own desire, separate from men’s desire for them, is still not de rigueur?
But for all the stretching and lube and lasering, whether you maintain your pH or put a READY silicone capsule inside yourself for increased lubrication, or all of the above: ultimately, you are not the same.
Hope: can you learn to live well in conversation with death?
O spare me, that I may discover strength, before I go hence, and be no more.
Psalm 39:13 (KJV)
I walked into Dr Theile’s office on a brisk July morning with no nipples, and an hour and a half later I had some. They were not giving any peekaboo action through my shirt yet, of course – when I peered down my top all I saw was two 20-centimetre blood stains under waterproof dressings. The dressings stayed on a week.
I opted to have the nipple ruffles performed under local anaesthetic, to avoid a general anaesthetic and hospital stay. It was painless, and took the length of a good lunch with friends. I didn’t have to enter the hospital system and more importantly have my brain and body shut down for a minor surgical procedure. No nausea and no pea-souper.
While I was on the operating table, Dr Theile, his nurse and I talked about Charlie Teo – a renowned (some say notorious) Australian neurosurgeon. I’d just read Life in His Hands, about Dr Teo’s treatment of a young pianist with a hemangiopericytoma brain tumour. These tumours originate in membrane covering the brain tissue and are classed as malignant because the recurrence rate is high and they grow fast. They mostly occur in young men.
My plastic surgeon and Dr Teo met as registrars in Queensland. Dr Teo had sat in a coffee room in full bike leathers, with a thumping 1000-cc motorbike parked outside, after riding up from Sydney. Dr Theile liked his openness and thought him a genuinely nice guy.
According to some neurosurgeons Charlie Teo operated on patients others classed as inoperable. Some of his surgeries resulted in quicker deaths and unpleasant final days before the brain tumour took its toll. My discussion with Dr Theile that day was about hope. Dr Teo provided hope when others didn’t, even if the surgery was so risky the person’s life might end in the operating theatre.
If you have a doctor willing to risk a procedure that might give you longer on the earth, and you’re fully briefed on the consequences if the operation fails, then having the choice to hope, beyond medical doubts, is worthy in my eyes.
American haematologist-oncologist and author Dr Jerome Groopman put it like this:
My place is to provide choice and understanding. To hope under the most extreme circumstances is an act of defiance … that permits a person to live his life on his own terms. It is part of the human spirit to endure and give a miracle a chance to happen.
Dr Groopman said that what was once a miraculous turnaround from likely death is now more commonplace. The advancements in chemotherapy treatments have provided hope in areas previously thought hopeless.
The reason I was lighter and happier when I woke up without my breasts was that hope had flooded back into my room. I finally dared to think I might survive this.
Several months before my mother died the palliative chemotherapy she received had shrunk the metastatic tumours in her liver. The reason my mother gave palliative chemotherapy a try was to sustain her life long enough to tie up loose ends like a failing marriage as well as to have as long as possible with me. Her then husband left the house with their two untrained wire-haired fox terriers and went on a road trip. An escape for him and us. He said he did it for my mother, knowing his presence and behaviour were unacceptable and disturbing. He also hitched his wagon to another unsuspecting woman, advertising himself on a dating website as a widower before my mother was dead. Love me, love my dogs was his by-line.
When I entered her home to become her full-time carer, she had, in her own words, been sent home to die. There was no further treatment offered, and no arrangements made for hospice services, or even any information about support services in her area. In the Northern Rivers you had to drive to the Gold Coast or Brisbane for appointments with medical specialists. I wasn’t informed about travel or accommodation assistance for overnight stays if my mother was too il
l to sit in a car after a hard day on the drugs. Once, our car broke down and we had to wait for roadside assistance. There was no hope of a recovery and she’d been given roughly a year to live if she made the palliative chemotherapy trips. A year after my own diagnosis I became a cancer patient advocate with CanSpeak Queensland to correct some of these ways in which the health system failed people diagnosed with cancer, especially those dying of the disease.
One morning Mum sat up in bed and in a chirpy voice said, You never know, a miracle might happen. I could still be cured. She smoothed the creased bed linen across her lap.
Well … I started, then softened my tone to sound gentle. I just don’t want you to have false hope. Your cancer is classed as terminal.
Mum looked down, making a face like a child who’d been chastened. Tea then? She brought her chin up.
Coming up! and I exited stage right to the kitchen.
Why did I not have more fun with it? Make the conversation lighter? Instead I quashed her levity.
In Life in His Hands a New Zealand journalist, Michael Bartrom, was refused a referral to Dr Charlie Teo on the grounds that his doctors didn’t believe anything more could be done. Bartrom considered their attitude amoral; he could only imagine a future with himself still in it.
We all have this vision and wish to be the ones sitting in a future photograph surrounded by friends and family instead of the absent one in the picture. Hope offered in the hands of medicine and its latest findings lets us die knowing we’ve done our best, or that the choice was ours to refuse further treatment and a handshake made with death instead.
Unfortunately my nipples didn’t stay in place. Instead of nipple ruffles I got nipple pimples. The waterproof dressing was not so waterproof. I left the dressing on for several days as advised and when I changed it the wound area was infected. I guessed the water trailed in along my mastectomy scar, because the second waterproof dressing (which was said to absorb fluid up to ten times its weight) allowed water to sneak in also. My friend, an experienced wound-care nurse, said that the infection was likely there before the dressing became wet.
With the infection the wound’s stitching spread apart and in effect undid/unzipped itself and the neat job performed by my surgeon. The result of all this was that my previously pert nipple skin ruffles were flattened; they were goners.
Dr Theile told me to allow the wound to dry out. On seeing the infection he quickly announced, We’ll get them looking good, don’t worry. Then he proceeded to discuss skin grafts, preferably taken near an existing scar to mask the graft site.
I blanked out the entire conversation about skin grafting. I didn’t want more hassle for something that was between B and me only. If we could live with the current result then they were staying as they were.
After the wounds healed they were minuscule rises on each breast, which I decided to leave alone so that I could wear camisoles under tops and forget the bra. Moreover, if I wore a tight-fitting top the small bumps showed as flattened nipples would under a solid bra. In short, my nipples could fake well enough for me.
Post-it all emotions: does stress cause cancer?
… neural networks are sensitive and, once formed, are prone to repetition. In neuroscience, one of the first ideas I learned, no doubt made memorable by the convenient rhyme, was Hebb’s law: ‘Neurons that fire together wire together.’ The more I shake, the more likely it is that I’ll shake in the future.
Siri Hustvedt, The Shaking Woman
I had elevator emotions. They sat inside my chest in some sort of shaft. It was easy for the emotions to descend to the stomach’s ground level, a solemn interior with little light.
I clocked the elevator emotions as they descended: the nausea after a general anaesthetic bruised my outlook (it tingled in my chest); my son wasn’t babbling or saying words at 18 months (it weighed heavily at the top of my gut); I could actually die from breast cancer (bang on the bottom).
With the physical sensations of my emotions heading south, my face dropped its hold on fine muscles around my mouth, which was normally quick to smile. All of me wanted to pile up on the floor and Wizard of Oz out of there into another place in the world where I could be someone else.
In the blue of depression I smelt red. My blood was close to the surface. I feared an unthinking moment with a knife or tall building would spill it. I wanted to die to this life and rebirth into another. Not for real, you see, just out of the pain of it. The sickening flatness of no hope.
I’d thought these lows were all behind me. After the wounds healed from my double mastectomy and immediate reconstruction, I practised living in the room. What I meant by this was that when thoughts frightened me – of dying from cancer, or Celso’s future and mine as a full-time carer – I drew my mind back to what was in front of me. For three months, post-chemotherapy, I’d consciously done this. The positive effect was noticeable.
Celso was in the corner holding up a toy, and stamping his feet in joy as a good-morning hello. B had just brought in cucumbers, basil, asparagus and lettuce from our formal vegetable garden. I had half an hour with my white tea indulgence and an Isabel Dalhousie novel before my son required plugging in to feed.
The immediate reality was almost always better than my dark future imaginings. Things were generally okay. I had hope.
It took two days of nausea and bad diarrhoea to put me back on the elevator heading south. It didn’t happen like that before breast cancer or before my high-needs baby arrived. Back then, nausea was from a good meal turned bad or in my first trimester of pregnancy, and it evaporated under the warm, hopeful thoughts of the joy I’d get from my bright, sparkling baby to be.
But now I’d picked up Celso’s stomach bug, so for two days I was ill and running to the toilet all the time.
B and I walked to the local organic markets on Sundays with Celso in the buggy, which took 15 minutes. To the right of the bike path the tidal Breakfast Creek flowed out through the mangroves, which lined both sides of the river and were several trees deep. I often superimposed a crocodile’s head popping up near the water’s edge, though without the ticking clock. To the left were large playing fields and a dog off-leash area, with a couple of Welsh terriers and a golden retriever sallying about. The sun was out, it wasn’t too hot and we had money in our pockets for breakfast. It was really quite lovely – externally.
I found deep truth in this throwaway line: if you have your (full) health you have everything. Often during the intense illness phase of chemotherapy I could not imagine happiness returning to my life.
I pulled through the sick stuff knowing it would end. In the throes of a particularly bad night I understood how chronically ill people acknowledged they wanted out – they wanted death.
These two days surprised me in how suddenly a deluge of sadness rushed in when there was nausea. The queasiness was a body memory, triggering my dark days on chemotherapy. I was haunted by the chemicals.
We did the normal Sunday-market buying of bread and a coffee for B, chai for me, and saying hello to regulars we bumped into every week while Celso played in the sandpit. Our exchanges with people left me flat. Usually I was animated with people and enjoyed others’ company, but not during these two nauseous days. The hard-won enjoyment of food after chemotherapy deserted me again. I couldn’t fill up with good feeling from anything, not even my family. Celso likely made me smile at something or I’d give him a hug on the spur of the moment because I loved him, but the spark was smote.
When the nausea abated I got sudden buzzes of great feeling: I was alive. The simple truth of this exhilarated me. The adrenaline of dodging a bullet. In May 2009 I had aggressive breast cancer. A year on, I didn’t. I feared challenging the gods with the assuredness that I was a cancer-free person; that might jinx me.
The minutiae of everyday living didn’t seem so everyday. I’d spent a lot of time at home over the last few years: car
ing for my mother, supporting my partner while he worked and studied, studying for my MA, caring for Celso, and then recuperating from breast cancer while caring for Celso. At times cabin fever reached boiling temperature and I wanted to run screaming, not for the hills but for intellectual stimulation. This had quietened down after chemotherapy.
After my master’s panel interview, before Celso was born, where I presented my thesis and argued its worth, a fellow candidate said I had a bit of the obsessive about me. I’d planned all my slides meticulously. She was right; I did, hidden somewhere deep.
In late adolescence I’d pass objects like a handrail or doorknob and if I didn’t touch it the right way I’d go back and touch it again, for example running my hand along the full length of a shiny, wooden handrail. I also disliked people talking in abbreviations. I tended to use the full term or name before moving on in the conversation, for example if someone asked me, Could you buy some tommies? I’d likely respond, How many tomatoes do you want?
At 19, when I was studying and living in Lismore, I confessed my obsessive-type touch-retouch thing to the GP I was involved with; he said I was just wanting to get things right or feel my way in the world. It clicked instantly, and I stopped going back to hold the doorknob the right way, and other oddities. It was a similar light-bulb ‘got it’ when Mum took me for a long drive to tell me she loved me after she’d guessed that I was still drug-affected after a rave at 16 years of age. I stopped experimenting with drugs that instant: point blank.
A cancer diagnosis made me stop and look closely at how I was living: did I do anything to bring this on? I was ready to change anything, right away.
The first questions my breast surgeon asked were: Do you smoke? (No.) Do you get regular exercise? (Yes.) Do you drink alcohol? (The very occasional glass or two of wine.) Do you eat well? (Yes – we bought mostly organic food, milk and meat products.)
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