I gave up on my childhood friend Melissa Baker back in October 2014. I had driven a few hundred kilometres to see her face to face after some worrying online conversations.
Mel was diagnosed with Hodgkin’s Lymphoma exactly six months after my breast cancer diagnosis back in 2013 and began writing the blog I Got The Good Cancer. We referred to ourselves in jest as Kylie Minogue and Deltra Goodrem, Australian popstars that shared our cancers. We joked that there was something toxic in the school playground we shared all those years ago.
When I arrived at her home and walked up the stairs to her front door, I glimpsed her through the window. Her skeletal frame took my breath away. With the spark gone from her eyes and plagued with respiratory infection after infection, Mel had no immune system and no further treatment options offered to her. I honestly started to grieve for her demise.
This 39 year old, brilliant forensic pathologist and single mum to two beautiful kids had so, so much left to contribute.
I cried all the way to her house and all the way home from that visit. By the time I reached my city, my eyes were so swollen I could hardly see the road ahead.
When Mel’s treatment team gave up on her she sacked them and moved to another Melbourne hospital. Her new hematologist was at the forefront of a melanoma drug trial to treat lymphoma and Mel ensured she was the first Australian on that trial.
Not content with this last attempt to save herself, she has worked tirelessly to advocate for other lymphoma patients who are in the same dire position she was. She helped recruit and connect patients to the trial who had been offered no hope, and has given them much more time with their families. She no doubt will one day be credited with being the integral link that alongside the drug and doctors, saved their lives.
Two years on, Mel is in remission, and as she approaches the last eight months of the trial. she doesn’t know what the future holds beyond it. The drug is so new no one is able to yet talk of it as curative.
Mel is unbeleiveably relentless in her quest to raise enough money to fund the first specialist lymphoma nurse for Australia’s fifth most common cancer in which 5000 new Australians will be diagnosed with the next 12 months. By comparison, The McGrath Foundation for breast cancer currently has 110 nurses nationally supporting patients and their families.
I’d like to sincerely apologise to my friend for prematurely losing hope. The lesson here is there is ALWAYS hope.
Love and hope always Mel,
Mel will host a fundraising event dubbed “Not Your Average Trivia Night” at Frankston RSL’s Simpson Room on Friday, November 11, from 7pm. The event includes live music, three course meal, raffles, silent auctions and more. Tickets are $75.
For details, email firstname.lastname@example.org
Read all about Mel’s courageous story in print here.
Some of you will be following my school friend’s excellent blog called I Got The Good Cancer which details her experience as a Doctor with a Hodgkins lymphoma diagnosis. Where breast cancer has thousands of disease blog writers, Hodgkins Lymphoma bloggers are far fewer in number.
I was hoping, as everyone was that Mel’s triumphant journey at beating Hodgkin’s Lymphoma was nearly complete. But today she received results of a positive PET scan after six months of chemo, and after speaking with her on the phone I was a lost for words. I didn’t know what to say to her apart from “I am sorry”. In the course of our conversation I said some ridiculous things…
“You will get through the next phase!” and “Wow you might lose your hair with a more severe chemo and end up bald like me!” or ” Gee that cancer card can really get a workout now!”
How very lame of me! And since I actually had cancer, you would think I would have an inkling of what to say at times like these. But no.
To be honest, I was in a bit of shock and wandered aimlessly all day. I felt sucker punched. Gutted for her. Disappointed. Angry. I felt the urge to get in my car and drive several hundred kilometres with my kids to her house which wouldn’t have been a useful thing for anyone.
I can’t help her process this news or take away her disappointment. It’s not my cancer journey.
I never had to have an MRI or PET scan to see if the chemo I had was working or if the cancer was gone at the end of treatment. In Breast Cancer land, once treatment is finished you are sent on your merry way. Slice the cancer out, then treat with chemo and rads. Come back if you feel unwell or have symptoms for more than two weeks they say. Sure, there are the regular checkups with oncologists and surgeons just to see if your okay, listen to your lungs, feel the lymph nodes around the armpit and neck area, but thats about it. For many, there is massive anxiety when this active phase of treatment ends. For months you just stumble around trying to come to terms with what has occurred and what lies ahead scared by every little symptom. Then it settles down and you get on with life.
But with Hodgkin’s Lymphoma the treatment course is quite different depending on the stage of disease and the presence of symptoms, with regular PET scans to monitor if the chemo is working it’s magic and shrinking the masses.
It’s hard to imagine what it must be like to undergo six months of chemo and then discover it hadn’t worked as planned, after your family and friends are willing the results to be clear. In your heart of hearts you know that the metabolic activity of cancer will still be there because as an astute doctor you can feel the nodes in your neck growing.
And while feeling and sensing that the results you want aren’t the results you are likely to get, you have crazy people turning up to your final chemo session to give you a handmade T-shirt with rainbow coloured letters with the slogan “I kicked the good cancer” and then they throw streamers at you when the last drop of your chemotherapy goes in. Celebrating the end of your treatment and wishing you well for the next 50 years. Mel blogged about this final chemo session here.
And then… bang bang! The PET scan which shows that there is still cancer active in your nodes and chest, with a week to wait to find out what the next plan of attack is.
So in light of the fact I couldn’t say or do anything useful today, and embarrassed at my last attempt at t-shirt design, I have made my way back to the t-shirt slogan drawing board. Some are inspired from points in Mel’s blog and could apply now or down the track when the fu*ker really has been obliterated.
Lisey’s Lame Attempt at Hodgkin’s Lymphoma T-Shirt slogans round two.
**Come to think of it, Mel might be the only one to smile at some of these.
“I kicked The Good Cancer, it just took me a bit longer”
“ABVD can kiss my grits!”
“ABVD ACDC for every dyslexic hemotologist”
“BEACOPP. Should have followed the German Docs the first time.”
“Forget pre and post menopause. Menopause is now!”
“Anticipatory nausea, oops there it is!”
“My hematologist made me feel like I just had a cold. Whose laughing now!”
“Self Diagnosers Unite”
“Nauseated or nauseous, which one are you?”
“Keep calm, It’s just a positive PET scan.”
“It’s my PICC line and I’ll swim when I want to, swim when I want to”
and for later in the year…
“I really have kicked the good cancer. No really I have.”
In true form, tonight Mel is telling jokes and reassuring people, which is what any strong, kick arse, cancer patient does. It’s full steam ahead for Mel in the planning of our 60km walk in four weeks, like the true boss that she is. Mel has put so much effort into arranging our team for the Walk to End Womens Cancers for Peter Mac and will potentially now be undergoing more treatment at the time of it.
I don’t care what the walk organisers say, I will push her in a wheelchair the whole way if she is keen. I’m even thinking of buying this contraption below which caused me to stop on the side of the road this last weekend for a geezer. I think it can be decorated in Priscilla Queen of the Desert style. There is even a roof for shade and a place to store chemo meds. I might have to get the riders seat fixed though.
Love you Mel x
If you would like to donate to The Good Tittie Team click here, please select and donate to a team member who hasn’t yet reached their $2,000 dollar target. We desperately need all members to get to that magic number in order to walk.
Many thanks to all that have donated so far.
The Weekend to End Women’s Cancers benefits the Peter Mac Cancer Centre. It is a 2-day, 60-kilometre walk through the neighbourhoods of Melbourne. Money raised through participation in and donating towards the weekend will help impact the lives of hundreds of thousands of women and their families, here in Australia, and right around the globe. Peter Mac shares its research discoveries and its expertise beyond the benefit of patients treated at Peter Mac, to healthcare organisations and research institutes around the world. For information about the Walk to End Womens Cancers benefitting Peter Mac click here.
I’m sorry! I have finally reached the point that I might need to start drafting invites to my pity party. You were all expecting it at some point. Go on, admit it! Anyone want an invite? It’s guaranteed to be a blast. You all come over and we sit around in the dark. There is no food or alcohol, just a bald head with a eyebrow-less and lash-less, solemn, podgy face. There will be no music and no dancing as 95 year olds filled with chemo induced arthritis don’t boogie. Though there will be some empty, scattered pain med packets and the sombre host will very likely be dressed in pyjamas. Except don’t go thinking it is a pyjama party. It isn’t. Finally, when you are so bored and depressed that you just can’t stand it anymore, you can leave. Yes, the most anticipated party of 2013 is coming!
I’m 7 months into treatment which has (in no particular order) entailed; 3 mammograms, 4 ultrasounds, 2 core biopsies, 1 sentinel node biopsy, a full clearance of 21 lymph nodes from my armpit, some serious cording complications, 3 chest X-rays, 2 full bone scans, 1 chest abdo CT scan, 18 blood tests, 6 rounds of chemo, 1 lumpectomy, 1 mastectomy, countless dates with the surgeon, psychology visits, physiotherapy, tears, pain, 50 odd empty pill canisters, a bucket load of laxatives, tissue expanders, scars, nerve damage, grief, loss, ongoing (worst ever) spinal pain that has held me hostage for five weeks and caused a decline in my mental wellbeing, and a partridge in a pear tree.
I’m feeling like I have hit rock bottom with this. And I’m hoping I have as I can’t imagine it getting any harder. Though life is full of surprises right?
I am mindful of the procedures that still lay ahead… another mastectomy and reconstruction with implants in 9 days, and 5 joyous weeks going to the radiotherapy barbecue. I’m even getting some black radiotherapy tattoos even though I HATE tattoos, on my chest of all places. All of this is to be completed by mid October, in time for 5, maybe 10 years of hormonal therapy. But that’s enough about me, even I’m tired of listening to this situation.
Interestingly, none of this last crazy 7 months of treatment has affected me, made me more shocked, angrier or sadder than the out of the blue message I received nearly four weeks ago.
Are we still competitive in adulthood like we were in primary school? I have pretty much been diagnosed with cancer today. Will have a biopsy soon to confirm what we already know. Not in the boob though, it’s lymphoma.
So, do I win because it’s probably a better cancer to have? Or do you win because you will endure so much more? I’ll get away with one tiny incision to remove a lymph node! I think you are the winner.
At the moment, I’m hiding away not wanting to talk to anyone. Did you go through that? I hope so because I am hoping that phase passes and I can be even half as courageous as you.
Maybe there was something in the water at our Primary School. The timing is pretty unbelievable!
Hope you’re well and through or nearly through your chemo. We will chat soon I’m sure. Probably no work trips to your town in the near future but hopefully we’ll catch up to compare head scarves or something.
I hope we can both grow old and look back on what a crap year 2013 was!
This is someone who has been a great emotional support to me since January, visiting me in my home town through my treatment several times despite living several hundred kilometres from me. We reconnected this year and I have even blogged about her several times… the genius forensic doctor who I have written about here has devastatingly joined the cancer club, the club membership that noone wants or deserves, where memberships are randomly chosen.
What are the chances that two girlfriends who met in grade five at primary school and went all through high school in the same class, played tennis and netball together, would get diagnosed with cancer in the same year in their thirties, six months apart to the day?
As I am finishing chemotherapy, she will begin a gruelling six month course of fortnightly visits to her chemotherapy ward. I still cannot comprehend it and yet I know she has already started walking down her long chemo road. As my hair begins to grow back as cat fur, hers will just begin falling out. As I move out of the chemo brain drain and pain game, she is just being sucked in. Hard to comprehend really.
How will this news feel to our mutual friends? To the people we went to school with? Is this the beginning of a cancer cluster? Or is this just what happens as we age and we are somehow the chosen ones of an umbrella of diseases that claims the most number of Australians than any other?
This predicament has unsettled me greatly. Since January I have firmly stood at the centre ring as “cancer patient” in my own crisis. The road has been lonely. Now, I am joined by a friend. While still being treated for cancer my role and perspective has had to change, I need to put my feet outside the circle to make room for someone else’s crisis and be of support to her. I feel helpless and I wish I could do more. I worry about what to say. I think about how can I best be of support living so far away? Should I even complain about my own predicament anymore? We text often.
I’m beginning to understand the impact of cancer from the “outside looking in” as all my friends and family have experienced. I’ve been so blindsided by my own diagnosis I hadn’t really considered the impact that this year has had on my own friends and family who have watched me struggle and change, have watched me lose my hair, and put my dreams on hold while this disease makes me pause my life for a year of treatment. It’s not just about me anymore. We all have struggles. My friend’s diagnosis is teaching me so much already.
So to answer your question, “Are you the winner?” You were always the winner. You had the better fingernails, the better dress sense, better monkey bar skills, the better earrings, the better hair, better teeth, you were smarter, got higher grades, and had the conviction and drive to work towards a career that you had passion for. One of our close school friends, Bevan Lemon often laments that by his definition, you are one of the most successful persons from our school. But you have cancer now, so that might take you down a peg or two. I can’t wait to see what sort of magic comments Bevan makes as you lose your eyebrows! I kid, I kid.
So far, you have handled your diagnosis and treatment like a true champion and I wait with anticipation to see if you come up with a better blog. Or even if you’ll say, “fuck it, now I have cancer I’m joining Facebook!”
It will be hard for you in a way I have not experienced. Being a doctor means you can see the treatment path ahead. I was lucky, I was blissfully ignorant to the treatment realities. Your vast medical knowledge and experience means you are always a step ahead of your own doctors, accurately self diagnosing and being able to tell your team what tests you need if they even flinch for a second. You even have access to excellent friends in pathology and radiology to give you second opinions on scans and you were able to have your extracted lymph node hand delivered to your chosen expert. Though I’m surprised you didn’t run your own pathology on it. That would have really been something!
You will learn who matters and who doesn’t and what is important in this crazy thing called life. It will fundamentally change you to the core. You might start to reevaluate the relationships in your life as I have. You will learn that there will be times when you have to ask for help and you have to get people to look after you because you can’t. You will be surprised at the people that will be there for you and the ones that aren’t. You will learn to laugh at the stupid things people say or believe about why you got cancer, or how you got the “good cancer” and “how lucky you are”. Your children will be okay through it all. You will be surprised at how resilient they are and how strong you are.
But today, this doesn’t stop me feeling sorry for our 4 children under 6 years of age, and sorry for our families and friends and deeply sorry for us. Maybe a joint pity party is in order? Cancer sucks big hairy ones. Nothing about it is fair, or just, or rational. Nothing about it makes any sense and I am really sorry this has happened to you and your family. I would have preferred to not have had to share this experience of having cancer with anyone. But together, we will make the best of it.
If I could say something to those two little girls back in 1985, it would be… in your thirties you will face a hurdle like no other, but you are both a formidable pair with a wicked sense of humour. You will get through it. It is true, it will suck dogs balls. Big hairy ones in fact. And it will be sucky and hairy for quite a while. No,
not hairy, hairy is the wrong word given what chemotherapy does. But for some reason, your lives will be intertwined in such a remarkable way after many years of limited contact. For the girls in this picture, the year 2013 seemed so unimaginable, so futuristic that it was the stuff of science fiction.
And now here it is, 2013 with an almost simultaneous cancer diagnoses which could also qualify as the stuff of science fiction.
A strange Delta and Kylie duet of sorts.
Another ten inspiring people contacted me and expressed their motivation for improving their lives; treating themselves with more respect, making changes to their day through eating better or moving more, getting their boobies checked out, paying forward kind deeds to those they know or surprising complete strangers. One lovely lass has stepped up her fitness goals and has started running 10km having never run that far before, and all of this whilst visiting Laos and Cambodia on a working and holiday trip. Go you good thing! Change in you can happen anywhere if you really want it to.
Quote of the week came from way out west “If you can do chemo, I can do kind!” Just love it!
So keep them coming people. For every ten peeps I hear from I’ll roll out the next Shittytittie Chemo cut. I’d like to hear from more blokes. Since blokes take a while to get on board especially since this is a breast cancer blog, and we all know blokes need a good kick up the bum to embrace these things especially when it comes to their health. So I have decided I will count any blokey contributions as two points towards a hairstyle reveal. Some of the guys I know just need a little helping hand.
All of this is riveting I know. But at least I’m having fun with it. It takes a lot of guts to embrace the effects of cancer on your life and it also takes a lot of guts to promote shameless ‘selfies’ and past embarrassing school photos on the world wide web. Something I never would have touched with a six foot pole twelve months ago. Not sure what has happened to me in recent months. I’m now full of guts! lol
Okay so back to the haircuts… The last bangs I wore on my pretty forehead were back in the springtime of 1983 which happened to be my FIRST EVER visit to a hairdresser. Back in those days I chose a shoulder length cut, with a nice straight part down the middle and a lovely flicked fringe. The photo is months after the haircut but you get the gist. Of course as the fringe grew out with no subsequent hairdressing visits, it had to be restrained by wearing a bit of white lace around my head to hold the bangs back. I now admit I copied the lace idea from my cool primary school friend who later became the forensic pathologist I affectionately wrote about in the last four paragraphs of this blog. My primary and high school mates will remember this ‘lacey do’ fondly as I had it for the next 7 years. Some may even be able to produce photographic evidence. I loved the eighties.
As promised we move onto revealing “Shittytittie Chemo Cut Three” named the ‘Linda Librarian Evangelista’. Very special because it is the second time in 38 years I have had a fringe. The fringe embraced my forehead for a good thirty minutes before we moved on. It was sort of comforting in a teddy bear kind of way. And then Punk Chick continued on with her merry Edward Scissorhands journey.
For the beginning of this challenge and all the details of how to participate click here
Alternatively you can use the category menu at right of this blog to see all of the “Shittytittie Chemo Cuts Reveal Challenge” posts as they progress.
Who will be the next ten people to share their commitments to living a better life or making proactive steps towards creating a great legacy? YOU! Yes you! Get a move on peeps or I’ll still be trotting these hairstyles out come Christmas, by which time I hope the original hair will be growing back.
These organisation’s are very dear to my heart at present because they do some awesome things.
Bendigo Health Foundation Click to DONATE
I have spent the last seven days dealing with some hideous gastrointestinal bug. We had to cancel a plethora of planned celebrations and activities.
First born’s fifth birthday party celebration in the park complete with party games such as What’s the time Mr Wolf and treasure hunts… cancelled.
My own romantic birthday dinner with Mr Cool… cancelled.
Fine food experience indulging at one of the best restaurants in the city with girlfriends pre chemo before my taste buds drop off the face of the Earth and land on Mars… cancelled.
cancelled. Err, I mean… postponed.
Yep, that’s right, this week I haven’t eaten much of anything, and unfortunately I have been able to taste what I had eaten more than once!
A friend asked me if Pavlov’s dog was at work. It was worth giving some thought. Perhaps classical conditioning was at play, but instead of salivating like Pavlov’s dog when a bell rings, I was channelling what it might feel like to have chemotherapy in the coming weeks. My poor body! Who gets gastro for a week before chemo and gets their chemo delayed? I do. Go me! Come to think of it, I also remember experiencing morning sickness a month before I got pregnant with both of my children.
Concerned folk have made statements that my immune system must be low because I have cancer. I don’t see myself as being fragile and vulnerable. I thought I was healthy until the doctors told me otherwise. I just think I got the regular round of children’s bugs that you get when you live with young children that have a much better social life than you. So this week I have affectionately termed the “Gastro Pre Chemo Disco” week. And instead of the dance floor and the bar, I was running between the bathroom and the boudoir. I have not done anything cool like the Macarena, Nut Bush or the Bus Stop though. Remember those? At the Gastro Pre Chemo Disco there is the “Shit to the Loo My Darlin Shuffle”, the “Riding the Big White Porcelain Bus” and the “Heave Ho, Dosey Doe” manoeuvres. The next dance floor crazes coming to a disco near you! I can laugh about it tonight as the tummy pains have eased and the food is staying down again.
There have been lots of visits to hospital and introductions to new characters this week. I’m excited by what lies ahead in a sadistic kind of way. I’m like the new girl on her first day at a new school. Full of apprehension and hope. I’m getting shown around all the different facets of hospital life as a chronic disease patient. I’ve even been given a VIP card for speedy entry to the hospital’s emergency department. If I arrive at emergency feeling ill they have to see me quickly in a “Do not pass go, do not collect $200 kind of way”. Apparently chemotherapy has some perks. I wonder if the card also gets me a discount at the hospital cafe or pharmacy? Imagine that! Ten percent off for all VIP patients! I can’t wait to walk straight past and smugly make eye contact with all of the sick people who have been waiting for hours to see a triage nurse. At our hospital there is a queue just to see the triage nurse, then hours upon hours to wait to be seen by a doctor. What annoys me most is that the waiting room is filled with these moulded plastic chairs that you can’t lay down on. They don’t want you to be comfortable while you wait. Our hospital is a very stretched and under resourced hospital but at least the staff are great.
On Tuesday, when I thought the gastro bug had been exorcised from my lifeless body, I staggered my weak little self into my oncologists office and we met for the first time. My skinny jeans looked great on that day. It has been over 5 weeks since the mastectomy and 7 since the lumpectomy. It has been an anxious time of thinking about the surgical effect on the cells within my altered tissue, vascular and lymphatic system. I was told my lymphatic system had an excellent clearance rate so the thought of giving these cancer cells this length of time to go on a little journey around my body has not sat well with me. Lets hurry up and get this bloody chemo show on the road!
Interestingly, the Oncology Department is one floor beneath the level I gave birth to my beautiful children in. The layout of the building is identical. Walking into reception was exactly like going to have a pre birth women’s health check. Except without all of the excitement and joy of bringing a new child into the world. Incredibly, my oncologist’s office is located directly under the room where I spent precious time with my first newborn son.
The receptionist and oncology nurses were bubbly. I have found this with receptionists in these cancer related hospital areas. I wonder if it is a job requirement? Don’t be forlorn, don’t be depressed, at all costs smile and exude a positive energy because you are dealing with people who have cancer. Sometimes it comes across as a bit forced. Ease up on the happiness please ladies.
The time spent sitting in hospital waiting rooms provides exposure to the sort of television one would normally never wish to be exposed too. Though in this scenario, I’m kind of grateful for the distraction. This week I learnt that Lindsay Lohan can do all sorts of crazy stuff and keep getting away with it in the courts. I learnt that Tiger Woods is in a relationship again. (insert yawn here). Then the newsreader announced the breaking news that Gina Riley from the hit Australian comedy show “Kath and Kim” is being treated for breast cancer at 51 after a routine mammogram found a tumour that she wasn’t able to palpate.
After losing interest in daytime television I moved my attention to the room I’ll be sitting in a lot in the coming 5 months. The walls were covered in thousands of colourful paper cranes and instructional posters about hand hygiene and what to do in the event you have diarrhoea. So educational and useful for me this week. There was a book library which was filled with the kinds of books that sit on the shelves of charity storage for years as no one wants to spend 50 cents on them. Finally, my name was called in the tone you hear when being called into a principal’s office for some wrongdoing. With panic, you fumble to return your magazine, pick up anything you have, drop something, pick it up again, adjust your shirt, feel your cheeks blush, and start walking towards them. It feels like you have held them up for 20 minutes, when in reality it has only taken you 10 seconds.
Mr Cool and I entered the room of Mr Oncology. Initial impressions were largely positive. Shaved head, attractive, fit looking, bespectacled, mid forties man. There was a slight wiff of arrogance, but this quickly gave way to a doctor who knows his stuff. He generously gave us an hour and a half of his time. Most of it was spent addressing my questions about treatment. His body language was open. Not once did he indicate we were progressing too slow in our consult which has been a common feature of the cancer consult to date. There are always more cancer patients to see. By the end I felt confident and reassured that this oncologist knew his stuff and would look after me.
We had lots of similarities. He explained things by scribbling on a notepad which I souvenired. These scribbles were little extensions of his thoughts that guided his conversation along. I used to do this as a teacher. My students would follow the conversation and the annotations, but could make no sense of them once the conversation was finished. I used to call this my “chicken scratch”. In context, it was highly meaningful. But out of context, illegible.
He scribbled down about six different chemotherapy regimes. I wanted to know why he had advocated one over all of the others. His explanations were clear and detailed and backed up with studies. The best toxic mess regime for me will be six cycles at three week intervals. For the first three I will be having a combination of three drugs refered to as FEC, then the last three will be Taxotere. Each drug attacks cancer differently. There will also be steroids that will blow me up like a puffer fish and loads and loads of other drugs such as heavy duty anti-nausea drugs and drugs that are self injected to promote the movement of white blood cells out of my bones. All of this was to start on Thursday, but was moved back another five days to Tuesday because of gastro. I am going to look like a hot little mess in the coming months. Bald and bloated. Bring it on!
He then said “There is something I need to discuss with you, I am going on study leave for six months at the end of this week.” Crash! No more dating for us. Sigh… So I asked him where he was going and what he was studying. “Italy to study breast cancer” he replied. My internal dialogue is saying bastard! So I blurt out “I hear they have great food and coffee in Italy!” It occurred to me that with four and a half months of chemo, then surgery back in Melbourne I probably wont be seeing him again. So I disappointedly said “You will miss my whole treatment.” He laughed and said, “No, you will be coming to see me for years with your hormone therapy that will last from 5 to possibly 10 years.” I replied with a little giggle… “Oh, ours is going to be quite a long relationship then isn’t it?” We laughed. He assured me that his replacement was a fantastic oncologist who happens to be a woman. I like women. I wonder what sort of shoes she will wear?
By chance on the same day I got to meet the Giant again so the genetics stuff is all a go. Seven vials of blood later, my genetics will be tested. This test is being fast tracked because the results could indicate a slightly different chemo regime if I come back as having a postive result for the BRCA 1/2 gene mutations, it would add another 6 weeks onto my chemo. Unfortunately, Miss Red Lips was not present at this meeting, but she sent me a lovely handwritten note in the mail with her contact details. How special and much easier to stalk now!
Mr Cool and I also went and had a discussion with the radiotherapists during the week. This was to ascertain if radio will be required or not. The benefits of post masectomy radiation therapy for someone like me, young and with a multifocal aggressive cancer are not documented in scientific studies, that means, the survival gains in statistical terms aren’t really known or are only small when pitted against the risks associated with radiotherapy. The list of side effects is quite long. Some radiotherapists feel it is not worth it. The Supremo trial is presently collecting data on whether there are any benefits for post mastectomy radio for women under forty. But results wont be known for years. So certainly I’ll have to do more research in that regard. I want to throw everything at this disease. I don’t want it to reoccur locally. There is likely to be breast tissue cells left in my chest, sitting alongside my new tissue expander. They could take off as cancer again, so that is why radio is used to sterilise any cancer cells that are left. Unfortunately, radiotherapy has on occasion caused chest wall cancers, lung cancers, liver cancers and damage to the heart, which if i was 60, might not be such a serious concern since I might be 75 by the time there is an issue. But I am 38 and have a lot of years left to live. To fry or not to fry: that is the question.
Frustratingly, when I went into this meeting I thought the medicos would have all the stats and there would be a definitive answer around what would be best for me. But it is not clear cut, the “survival advantage” of post mastectomy radiotherapy is not known. “Survival advantage” I really don’t like that term. Statistically, I will be 73 to 84 percent likely to be alive in five years. I was never good at mathematics. But I do know that having a 27 percent chance of being dead in five years scares the bejesus out of me. I’ve always been a glass half empty kind of girl. But I’m working on changing that! A way of looking at treatment is having chemotherapy reduces the chance of the cancer coming back by 40 percent. Hormone therapy such as Tamoxifen which I will have for many, many years reduces the chance of recurrence by another 40 percent. Radiotherapy might only give me an extra two percent. At least I have plenty of time to decide with chemo, another mastectomy and sentinel node biopsy still yet to get endure. Can’t wait to catch up with my surgeon again!
Then on Thursday I had the pleasure of encountering Crazy Echocardiogram Lady. My oncologist sent me to get an Echocardiogram to make sure my heart is strong enough to withstand the chemo drugs and to provide a baseline of my heart before treatment commences. This seemingly easy diagnostic procedure has by far been the most uncomfortable of all that I have encountered. Perhaps even eclipsing the mammograms and nuclear tests I have had to endure.
Crazy Echocardiogram Lady looked at me through her Coke bottle lenses. She asked me a question in the most awesome Asian/Australian accent and then shouted “Stop talking I cannot concentrate!”
Some other pearlers throughout the diagnostic evaluation were…
“Take your clothes off, the top half, put your stuff there, no not there, I will trip over it.”
“Move your body towards me. No shoulder back, no move body closer, no not that far. Lift your arm higher. Higher! Higher! Why you no lift your arm?
“Your scar tissue is bad. Much worse than last time you had one of these tests.” I made the mistake of trying to explain that I’ve had two surgeries since February, but she cut me off with “Stop talking, I need to focus!” And then… “I cannot get good images, scar tissue and the expander is making ultrasound pictures blurry. I’m going to have to really dig. So tell me if it hurts okay?”
The digging almost went through to China! But I said nothing. I wanted clear pictures of my heart dammit!
Another Crazy Echocardiogram Lady quote worth mentioning was… “Oh it’s so, so hot in here!” While frantically flapping the colar of her shirt and then “Are you cold? Can I get you blanket? Are you hot? Gee it’s stuffy in here!”
But the winner was… “I am not comfortable I need another chair” in spite of me obviously being the most uncomfortable I had been in my life, laying bare chested on the slab with my useless arm stretched further than physically possible after having the lymph nodes removed and with a cording complication. Midway through the test she jumped up and rolled her chair out through a door. And not just any door. One of those types that has an excruciatingly slow automatic closing mechanism. This exposed me to all of the technicians in the adjacent room who were sitting at their computer screens. Bare chested and with mangled arm twisted above my head, I counted at least ten seconds of humiliation when she exited, and then another ten when she came back with her new more comfortable chair.
I left my traumatic echocardiogram experience, and excitedly spoke on the phone to my guru forensic pathologist friend who came to my town to complete a morning autopsy at my hospital. As you do! Breakfast, autopsy, morning tea. It has been nine years since we caught up. Where has the time gone? Every girl should have a forensic pathologist as a friend. These people are really smart. And they have a really dry sense of humour. If you die as a result of a crime they will carve you up to get to the truth. My friend is way more attractive than Dr. Gunther von Hagens which by the way used to be one of my favourite documentaries back in my morbid fascination days. She said she would pick me up and we could have a quick cafe stop between my appointments. I’m busier and popular now that I have a chronic disease!
I excitedly stood on the street corner outside the hospital wondering what sort of car would she drive. As a forensic pathologist it would have to be black. Maybe a Jeep? Maybe a Merc or something? No, likely to be associated with her employment. It might need to carry a body. (I kid, I kid) Maybe a van with all the windows blacked out. I was racking my brain through all of those episodes of CSI and NCIS that Mr Cool had made me endure. When her car arrived, I jumped in and we started laughing. I asked her if it smells to dissect the deceased. Like a true professional she gave little away, so I had a secret sniff of the car to see if there were any lingering remnants. All I could smell was her lovely perfume.
Interestingly, my friend had always known that this was what she wanted to do when we were at school and she was barely 17. (I still don’t know what I want to do with my life over 20 years later). This was a long time before any of these crime shows appeared on television and everyone became armchair forensic experts. I am able to solve every crime on TV. It’s really easy. Seriously though, forensic profiling had only just hit Australia in 1988 and disaster victim identification was in its early stage as well. She was already talking about cutting up dead people and pursuing a career in forensic pathology way back in the early 1990’s and she finally did it after some time working as a doctor in hospitals and bucket loads of further study. Apparently the living aren’t as exciting. I’m putting it on the record that if I ever die from a crime, (Suffer again cancer), I want my friend to carve me up to get to the truth. Though I hope she doesn’t record things like… “Deceased is very well nourished”, which I once saw Dr Gunter do with respect to a female corpse who was a bit chunky.
It was so great to catch up with her after many years. I admitted to being fiercely jealous of her when she arrived at my primary school as the new girl in 1985. She had older sisters, which I didn’t have. She was cool. She had matching pastel pink capri pants, pink anklet socks and a pink ribbon in her hair. I think she also had that complete outfit in baby doll blue and maybe even canary yellow. She also had some plastic frypan earrings with a little fried egg in them. Her skills on the monkey bars were also amazing and she could run fast. She was so cool that she called her Mum by her first name. Many years later, I still credit her with teaching me how to be studious. But her awesomely wry sense of humour connected us and it hasn’t changed. She still laughs at the silly things I say after all these years.
Oh and she was driving a black 4wd. American owned, but of the Australian made variety.