About me

I'm a neuropsychologist who has recently been diagnosed with breast cancer. This blog is intended to keep friends and family informed of my progress.

Be warned, I tend to be frank and sometimes technical about medical and anatomical issues, and this may be confronting for some readers.

I am not an expert in this, or anything, it's just a record of what is happening to me, and the thoughts, emotions, and information that I am experiencing.

I will do my best not to offend - I find that trying to be objective helps me to understand what is happening so that I can make logical decisions, with the help of my treatment and support team.

I'm still feeling emotions, getting angry, afraid, and crying at times, but I prefer to be positive about this unexpected turn of events, and I hope to grow throughout it.

Cancer totally sucks. Love rules.

I really, really should get to sleep

But I don't want to put my head to the pillow and end up crying again. It will wake Ben, and he needs sleep as much as I do, especially with the challenges ahead.

I used to love sleeping, still would if I hadn't gone through 10 years of disturbed sleep thanks to my children, if I hadn't experienced the torture of being woken repeatedly when I was just sinking into sleep, and long-denied dreams.

I was starting to sleep well again last year, until Dad passed away, then I stayed awake for as long as I could because I didn't want to have to try to go to sleep, I didn't want to succumb to my grief. It's become the new normal for me: Stay awake until it hurts my eyes so much that I struggle to keep them awake, but then push on a bit longer because it feels like there might be tears there, then go to sleep when the prickly feeling has passed.

Cancer sucks, shit happens, life's a bitch.

Or

Cancer happens, shit is necessary for eliminating waste, life's a gift.

?

I'll take the latter. I don't want to have cancer, but in the scheme of things, a grade II invasive ductal carcinoma with possible lymph involvement but no secondaries isn't a bad way to go. Lungs, liver, pancreas, or more advanced breast or cervical cancer would be worse.

I'll get through this, I've felt as if I've been swept up on a wave of love this last week. My heart, being fearful, was initially shocked at all the love and support that people have given, but now it's opened and is blossoming in joy. It's a wonderful feeling, and I feel an immense gratitude to all the people who have written words of support.

If love is the most powerful force in the universe, then I'm feeling it, and giving it back to every living thing. It's a beautiful feeling.

I once had an experience where I felt like I was a tiny drop of water in an endlessly tall waterfall which started in the clouds and fell through the sky in a ceaseless cascade. I knew that the waterfall represented every person, every creature, every thing that had ever existed, and that we were all part of an infinite, interconnected, interrelated stream of life. There was love and joy and a relentless motion and recombination of the water particles in the torrent. Fear and suffering were just distractions at the side, the torrent was all about love, joy, and the fundamental interconnectedness of all living things.

I wouldn't choose this cancer for myself. It is totally unfair that my life, and that of my family and friends, is going to be disrupted by a treatment that will make me feel worse than I do at the moment. But I'm already enriched by the love of others, and I hope to be able to grow and give more love as I pass along this path.

The prickly feeling is gone now. I'll see if I can sleep.

Wishing much love and peace to every living thing.

Requiem for a doomed breast

Twenty past midnight.

I really should get some more sleep.

Went to sleep two hours ago on the futon on the floor in the boys' room, woke up because my right arm had gone to sleep. Very annoying, and uncomfortable. It's still tingling.

David was angry and tearful again about the imminent loss of "leftie," and I messed up the explanation of the reconstruction process because he picked up that they might do something to the right one as well.

My friends used to joke that David would be asking for "bitty" as an adult, like in the Little Britain sketches, I fed him for so long, and he was so reluctant to be weaned. Nathaniel, on the other hand, weaned himself one night when he was unwell. He simply slept through and wasn't interested in his nightly feed, and when he regained interest, the milk was dried up. Possibly transformed itself into resentful ductal cells at the rapid loss of demand for its supply - the left was my best milk producer, favourite side for both boys. The side that sometimes squirted milk in thin powerful streams if a drinking baby took their mouth away too quickly, the side that sometimes produced so much milk that they struggled to swallow it all, the side where I could press on the skin and squirt milk onto their little faces, which would screw up in a tickley giggle.

Thanks for nourishing my two beautiful boys for seven years, left breast. You served above and beyond the call of duty. I'm sorry that you chose to keep on producing, but the wrong type of cells. I wish you'd chosen a quiet retirement. I did call on you for seven continuous years, I know, and you were remarkable in your devotion to duty, continuing to produce throughout my second pregnancy, swelling with your twin to embarrassingly large proportions when Nathaniel was born. I took advantage of your willingness to serve because I thought that this prolonged tour of duty would prevent the risk of the very thing that will see me say goodbye to you in 13 hours time.

I'm sorry we will have to be parted, but I need to live for my two young boys, and for all the other people I hold dear. I would have liked you to be there when I get my letter from old King William in 55 years' time, but as you've led a cellular mutiny against my body, you have to go. I will be sending your twin to follow you when the time comes to rebuild your empty covering.

I never fancied a boob job. My breasts were one part of my body I was fond of, despite the occasional monthly aches. I even enjoyed the resistance to gravity that your density provided, little knowing that you were hatching a plot to punish me for not letting you continue to feed my children. I didn't want to stop feeding him, I wasn't ready, but you withheld your milk after only two days, and even though he sucked as hard as he could, you refused to let any more out.

So thanks for the memories, my babies nuzzled at my breast, the thrill of a lover's caress, the cushioning of little heads as they snuggled next to me. You've done a fine job, and I know it's not your fault, maybe you have as little control over those ductal cells as I do. So I'll spare you the ignomy of being labelled a traitor - perhaps you have also saved me, in holding the cells for as long as you have, and in preventing them from spreading into regions more difficult to treat. Thanks for all that you've done. I'll always remember you.

you've got to laugh

Many things have struck me as ridiculous in the past two weeks. I'll share them here in case I forget what was funny after the mastectomy, or if I lose my sense of humour during chemo...

When the surgeon said she'd have to take my nipple, I was shocked. "But I like my nipple!" I protested. She responded "It's a very nice nipple, but it's too close to the tumour. If I leave it, it's likely some of the cancer cells will be left too." Okay, I can deal with that logic. My friends later told me that they can reconstruct nipples, and do a tattoo of the areola. "Why do that?" I asked, "When I could have a boob like Barbie's?"

Having the bone scan to check for mets was a good chance to relax - 30 minutes lying flat on my back while a huge camera passed slowly down my body, starting an inch away from my face. I dozed off near the end (again) - but I'm delighted with the images. No mets, and a skinny size 10 skeleton which might get arthritis in the knees (like mum and her grandmother) if I don't lose the cutaneous fat that you can't hide around it. It's given me an idea for a motivational app for people unlucky enough to have a bone scan - I'll call it Skele-app. People will be able to upload their bone scan images and then dress their skinny skeletons in catwalk fashions of choice. Looking at bone scan images on the web convinces me we all have sexy skeletons, we just end up padding them in different ways.

The chest and abdo CT tells me that I've got sexy muscles on top of the sexy skeleton - again, the fat under my skin will have to go - but after chemo. A good friend who's been through chemo said that many women lose weight during the process, so I'm glad to know that my body has stocked itself well for the travails ahead.  For the first time in my life, it's apparently good to be 15 kgs overweight.

The CT also reveals very little visceral fat (the fat inside your abdomen that surrounds your abdominal organs, or viscera),  which is great. And all those episodes of excessive ETOH consumption in my late teens and early 20s haven't visibly damaged my liver. Lucky I failed in one new year's resolution to drink more alcohol...

I spent an hour talking to my gynaecologist today (learnt that a normal cervix looks like a donut, but that there's another kind that looks more like a flower - described as floppy!) The CT scan also shows that I have a bulky uterus, and a nice big fibroid nuzzled and calicifying next to it. We talked about what to do when they take out my Mirena tomorrow (it's an IUD that emits progesterone, and they want it out because my tumour has progesterone and oestrogen receptors). Mirenas aren't recommended for women who have had breast cancer, but I haven't found anything about keeping it in for women who do have breast cancer. I'm not fussed about removing it - I want every chance of a good recovery. Problem is, I had the Mirena put in because of very heavy periods, and if I get that again while undergoing chemo, it will be a problem. Having anemia while your white cells are under attack doesn't sound like a good idea. So, if she can, she'll do an endometrial ablation while I'm under the GA tomorrow. They have a nifty ablation machine that has built-in safeguards to reduce the risk of perforating the uterus - but if my well-endowed womb is too big, the machine won't let them do the ablation. So I'll have to have an old-fashioned ablation with a rolling ball type device, but she can't do it, which will mean a different gynaecologist on another day. Sigh. We agreed that having a hysterectomy and mastectomy the same day would be a bit too much, and would prolong the recovery. The thought of trying to manage the stairs at our house with a sore torso and aching pelvis isn't appealing. Now I keep seeing images of a recumbent roasting turkey when I think of what will be happening tomorrow. At least I will still have a head, and one of my wings will be stretched out.... I only hope I'm done well. Thank goodness for general anaesthesia...

Now I just need to speak to my oncologist to see if I need an iron transfusion to correct my anemia before the big event. That bottle of Jansz in the fridge is calling me....

the 12 month review: a storm in a B-cup?

I had the mammogram and ultrasound on the morning of Thursday the 17th - the mammogram was so bloody uncomfortable (again), especially since she took 4 scans of my very dense left breast. I went straight to the ultrasound, and, curses, dosed off while she was imaging the left breast after I saw the first two cysts that were there last year. I woke up and joked about the large cyst on my left that I'd called Alfred - he's about 9cm long, and looked the same to me as last year - long and squishy.

The ultrasound seemed to go quicker than the previous year - different sonographer, I thought. Then I noticed that she seemed a little less chatty than she had been at the start of the scan (maybe because I'd rudely gone to sleep?) and I asked her if the scans showed anything. She said it was a little more dense than it was last year... so I trotted off to my surgeon's office to make an appointment for a review. Was told the first available was February 5th, and that the increased density was "probably nothing." Nonetheless, the surgeon would call me the next day if there was anything to worry about.

The 18th was the day of a funeral for the wonderful father of two friends of mine. I'd arranged to take my boys to a friend's place for a play in the morning, my mobile phone was set to silent, and the friend's place had poor mobile coverage. My husband managed to get through to me just as I was leaving, saying that the surgeon had been trying to call me, and to call her back immediately. Didn't sound good.  Rang the surgeon - ultrasound showed an abnormality, and possibly a lymph node - she'd scheduled me for a biopsy on the 24th and followup with her the next day. So I drove to collect my husband and went to the funeral, in shock and disbelief - I'd convinced myself I was just a neurotic, hypochondriacal woman with lumpy boobs. There wasn't supposed to be anything pathological - and I'd slept through the ultrasound.

Of course, the funeral was difficult. It was a beautiful funeral for a delightful man, and the fourth one I'd attended in less than 12 months. First was my father's in Feburary last year (he died in a nursing home after a long struggle with normal pressure hydrocephalus), second was a cousins (died in the same NH with progressive supranuclear palsy), third was another cousins (I was close to this one, she had a long and courageous struggle with cervical cancer), then my friends' dad (renal and liver failure - he'd managed his diabetes well, but didn't realise that coeliac disease can cause cirrhosis of the liver). So I was sitting behind my friends, wondering if funerals were like weddings, thinking I could take the best from all of them, thinking about the beautiful cemetery in my home town where I'd like to take my final rest - I choked up after singing the first line of 'The Lord's my Shepherd', and tried not to succumb to my fears.

I'm not very good at asking people for help, so it was kind of a blessing to have received the surgeon's news one hour before the funeral. In the gathering afterwards, I blurted it out to a number of old school friends, and got myself an immediate support group. It would have been harder to call or text them if I'd found out on any other day. But in sharing the news and the tip of my fears in that setting, I felt supported and accepted and that has helped so much.

the story so far

I was diagnosed with invasive ductal carcinoma of the left breast on January 23rd, and I will be having a mastectomy and secondary lymph node clearance on Thursday in Launceston.

I had bone scans, CT, biopsies, and MRIs done in Melbourne last week, and it's a relief to know that my bones and other organs are clear. It's likely that I will have chemo, radio, and hormonal therapy to get rid of these traitorous cells, and I'll work out some way to provide updates as I move through the treatment phases. My doctors say the prognosis is looking good, and my friends and family have rallied around to help.

I was worried about textural changes in my breast 12 months ago. I had a mammogram, which showed very dense tissue, and an ultrasound, which was normal. I continued to be concerned, but had been reassured by every doctor who palpated me over the last 8 years that I had very dense breasts, which is "common in younger women." My GP referred me to a breast surgeon for an opinion in June after there were further changes in breast appearance - the surgeon did a fine needle aspiration, which only showed fibrocystic changes. I went back to the surgeon in October, feeling like a hypochondriac, and asked if I should have another ultrasound or an MRI, which I'd read was more sensitive than mammogram in cases like mine. The surgeon said I should just repeat the ultrasound and mammogram in January, which I did, and here I am. The mammogram was still normal, the ultrasound picked up one lesion. The MRI detected 3. (nice symmetrical distribution at the 10 o'clock, 12 o'clock, and 2 o'clock positions).

Turns out, MRI is recommended for very dense breasts, and it's not covered by Medicare. But $405 out of pocket for images showing the location and size of my tumours is worth it - there's 4cm between the chest wall and the closest lesion, so my radiation oncologist says there will be a good surgical margin to the resection. I had a range of blood tests yesterday, haven't got the results back yet, but if I'm still anaemic after last year's horror menorrhagia, I may be having an iron tranfusion before surgery tomorrow. I also met a lovely plastics and reconstructive surgeon who talked about reconstruction options, which will be about 12 months after radiotherapy, if I need it.

It's all so surreal, the thought of having polyurethene-coated silicon mounds implanted under muscle in my chest - never knew that you don't need to wear a bra after breast reconstruction (the muscles make an inbuilt pocket to hold the implants), or that they'll need to be replaced every 8-10 years. Given the risks of cognitive decline after anaesthesia after age 65, I may go for the flat-chested flapper look at 64, rather than have another general anaesthetic! The surgeon reassured me that women in their 60's like their breasts as much as younger women do, and that there may be fat implants by then - the latter sounds better, I hope climate change doesn't disrupt medical progress.

And to add to the joy of this complex picture, I may need to have an endometrial ablation during the surgery. I'm seeing my gynaecologist today to talk about options. The path results on my biopsy showed the tumour has oestrogen and progesterone receptors, which means it may be good to remove my progesterone-emitting Mirena coil and do something to make sure I don't have heavy periods during chemo. Of course, I'm told, the chemo will kill off my ovaries, so I won't have periods after the chemo, but becoming anaemic again during chemo won't help my recovery. I guess an ablation will heal quicker than a hysterectomy - but I don't want to have either. I don't want to have cancer either - but you often get what you don't want, it seems.

 Aarghh! So much info to assimilate! I just wanted a quiet year, de-cluttering and renovating the house, doing the garden, focussing on my kids, family, and friends, going overseas... Looks like I'll be spending a lot of time at home... but won't be doing much in the garden because I'm not allowed to get an infection from the rose thorns.... really? I need to wrap myself in cotton wool? That will take a lot of getting used to

Careful what you wish for

A story for my boys, to help them understand the weeks ahead.

My breast is like a hill that has been invaded from within by enemy mutants. They've been multiplying in the ducts within the hill, and now they have broken out of the ducts and are spreading throughout it. We have to strike fast to stop them spreading in my body. We know haven't spread yet, so we have a good chance to cut them off before they continue their invasion plan.

The first thing will be a surgical strike, to remove the mutants where they are gathering strength. This should get most of them out, but it will flatten the hill, and some of the mutants might go to ground, so we need to use chemical weapons to poison them. As a final cleanup, we'll use a nuclear strike to make sure they're all gone, and that they'll never come back again. Then, in a year's time, we'll rebuild the hill.

Fighting this battle against the mutants will be tiring, but we will win. We've caught them out early, and they won't know what's hit them. We have a great team to lead the attacks, and to rebuild again afterwards. This team includes my wonderful boys, family, and friends, who make the battle worth fighting for.

 I'm feeling fine now, despite the mutant cells inside my left breast. There may be times when I'm tired, sad, or unwell, but they will pass. The present moment is perfect, and I'm not going to waste perfect moments in worrying about what lies ahead. Even when I'm sore, sick, or tired, it will be just another phase of the process of ridding these traitorous cells from my body, and I will be glad for the love that surrounds me.

Not exactly what I had in mind when I wished for a year off from work and to spend more time with my family...