Anyone for a nice cup of
tea psychological distress? It’s been brewing for weeks. It’s a strong dark brew with the most bitter of flavours. The blend is called “radiotherapy delays” and it’s served steaming hot for your enjoyment this afternoon. It might burn the skin of your delicate mouth which will annoy you for days. So be careful! How do you take it? One lump or two?
Tea aside, “psychologically distressed” might be a bit of an understatement at the precise moment my lovely radiotherapist used the phrase in our phone call after disclosing my five weeks of radiotherapy won’t now start till October.
“The delay to your radiotherapy must be psychologically distressing to you” they said. They must have to use the term quite a lot in empathic calls with desperate cancer patients.
“There is nothing I can do. We’ve got so many people waiting and it’s an incredibly complex treatment process to plan for. People have different treatment priorities, resources are stretched. We have issues with machines which gets us further behind.”
“Look if you want to have radiotherapy this week we could arrange for you to go to Melbourne. But of course you’d have to pay and find accommodation for 5 weeks” they said.
In my post phone call “psychologically distressed” state, I immediately opened up my iPad, and I managed to write some rambled, confused misspelt points on the WordPress iPad application. I felt clear headed enough to put it down and went and made lunch for myself and the kiddies. An hour later, and to my complete surprise, I began getting comment notifications for a blog post I wrote called “Psychological Torture” on my iPhone. Turns out my two year old published my ramblings on his way to finding an episode of The Octonauts. It’s true my two year old knows how to open crap on the iPad, and is a now a fully fledged publisher. There is a lesson there, obviously. But I’m still drinking my nice cup of psychological distress so am not quite ready to address it.
After this news, I think I might need an after hours psychologist on call. Is there such a thing in Australia? Or is it only available to people who pay for private health? Maybe I just need a bottle of wine. Do they sell nice bottles to public patients or do they have to line up and wait for the grapes to be crushed? Have the public grapevines even been planted yet? Who knows!
Welcome to Australia’s two tiered healthcare system which services the “haves” and the “have nots”. Where there is room for you today if you’ve got the dosh or live close to a capital city on the coast. It’s only taken me 9 months to begin to see myself as a “have not” in the big business of healthcare, which is probably a pretty good run. I am naive though. Often strolling along with my ideals about access to great public health care and education for all, yada, yada, yada.
Back in January and February I could not fault the care I received at a large publicly funded Cancer hospital in the capital city a 300 kilometre round trip from my house. Since coming home to my large local hospital for chemo, there were some faint whiffs of “have not” status with respect to some oncology appointments that never actually delivered an oncologist on the day. They were too busy to see me they said, so I was seen by a nurse practitioner. Don’t get me wrong, the care of the nurse practitioner was excellent, as was the care of the chemo nurses. But I was left feeling like I wasn’t getting basic care that I should have been getting and this was very unsettling. Was it even necessary to have an oncologist in chemotherapy? Perhaps it wasn’t!
I have endured gravy soup, many two hour waits in waiting rooms, and appointments with someone different than the medical professional I was booked in to see. Back in January I wasn’t given an MRI because the wait list in the public hospital for it was so long it could have meant my tumour would metastasize. The surgeon whipped it out of me instead with an instant recon and told me of this dilemma in June. I wasn’t told I could have paid 1,000 dollars for an MRI at the time and had it within 24 hours. So now I’m having the less than ideal radiation of a tissue expander that shouldn’t have been inserted. These ‘cock’ ups don’t occur in the private sector. Tests are arranged and decisions are made based on results. Money talks very clearly.
I finished chemo in mid July, had another surgery mid August and was told radiotherapy would start within 2-4 weeks after that on my non surgical side. It was discussed that there sometimes were delays, but they would do what they could to move me through. So I went ahead and made plans. I planned holidays, I planned a timetable of generous people to care for my kids in the daily hour I was having radio across five weeks and those people made plans in their lives and so on and so on. Big mistake!
On the 3rd of September I was measured and tattooed for radiotherapy. Then, I was told it might be another two weeks till it started. I was given an open appointment time. They will call me they said. Of course, as the weeks rolled on by and anxiety levels climbed, it got harder to wait by the phone or put life on hold while waiting to start rads. But my curiosity got the better of me and I called them today. And today, I was given my start date, (which I’m sure they just made space for me because I rang and hassled them). Had I not phoned I might have been a long way further down that list. Frightening!
I’m not even going near any thoughts of what this delay means for a grade three cancer grower like me. They probably don’t even know. Studies have only looked at women over 65 with breast cancer and with delays to their radio from chemo or surgery to rads greater than 31 days leading to poorer prognosis.
So since I’m not taking a boot load of cash to Melbourne to pay for radiotherapy and uproot my children for five weeks, I’ll just wait for it. In the meantime, to clear my mind and release some frustration, here is my list of apologies I need to make as a result of EXPECTING radiotherapy to start in a timely and optimal treatment kind of fashion in the public system.
LIST OF BIG ARSE APOLOGIES TO PEOPLE I STUFFED AROUND BECAUSE I’M A PLANNER BY NATURE (in no particular order)
- To Mr Cool. About your surprise 40th birthday party. Sorry I didn’t plan one. I thought I was going to be having radio and be too tired to plan and attend this and keep it secret from you given it was in the last week of radio. Now it’s in the first so it wouldn’t have been a problem after all. Two weeks might be cutting it fine to get the invites out, the big cake ordered and venue booked! Oops. Sorry about that! Perhaps a surprise 41st?
- To my Mother in law, it would have been great to see you go on your trip with friends to China. I’m humbled that you withdrew from this so you would be around for us while I had radio. Seems you now could have gone after all. I’m really, really sorry about that! Hope those Facebook pics of your friends on the Great Wall don’t hurt too much! Sure, you could have lunch with your friends to pass the time… Oh that’s right, they are in China! Maybe a Skype?
- To my friends who also planned to give up their time in the school holidays to come and look after our kids while I had radio, you won’t be needed now. Hopefully you can arrange some exciting last minute holiday activities for yourselves if they haven’t already sold out! Good luck with that!
- To my family, I’m sorry that the beach holiday accommodation we planned for the first week of November once my treatment was over has to be cancelled as I’ll still be having radio then. It’s not like we need a break or anything. There is always next year!
- Apols to my oncologist, I’ll get onto the Tamoxifen I should have been taking for let’s see, a month already but didn’t as radio was imminent and we didn’t want the side effects of both to hit me at the same time! Oops-a-daisy! Better get pill popping!
- To my husband, children and our dogs, I apologise for all of the cups of psychological distress I’ve been drinking lately.
On Friday morning, Mr Cool drove me 2 hours to the big smoke specialist cancer hospital, and despite arriving on time, I waited in the waiting room for another 2 hours for a 12 minute breast clinic consult. I was quite annoyed, especially since a friend of mine who had a later appointment was seen before me and I sat for another hour. Of course, when I went in my breast surgeon apologised for the delay and
I gave her a piece of my mind I didn’t mind, cause she is mesmerisingly impressive worth waiting to see. So all was forgiven.
In the small consult room we gathered, myself, the breast surgeon, the plastic surgeon and the breast care nurse.
After dutyfully stripping off, the plastic surgeon took a close up picture of my breasts with his iPhone doing my best breast pose. Naked from the waist up and with my hands on hips I nearly said cheese as he snapped away. Luckily I’ve been practising in the bathroom mirror for months.
I love the feeling of being photographed topless by a 60 something, hairy faced, balding plastic surgeon and this photo then sitting in his iPhoto collection along side thousands of other breast pics. I’m hoping he doesn’t leave his phone on a table in some random cafe. These pics I assume, will be safely guarded and used as a reference in surgery.
In four weeks, I will be having my preventative prophylactic mastectomy. Tests show no cancer in my right breast. But the risk of recurrence or new cancer is quite high and right from the diagnosis I made a decision to have the second breast off. If my tiny breast can have as much cancer as it did, then I don’t want any breast tissue on my body. Especially since the cancer is strongly Estrogen positive. This decision has not wavered since the January diagnosis.
At the time of this second mastectomy, they will put in a silicone implant and make a dermal flap to hold it in place and stop it from bulging out the top of my pectoral muscle which is pulled off the ribcage to make room for implants to sit behind. In the same operation, they will remove the tissue expander from my left breast that has been there for 6 months, and replace it with a silicone implant. I might ask if I can keep the tissue expander as a souveneir. Could be used as a paper weight or something. After a hostile start, we have become friends, the little Asian sized expander that was never expanded.
Working together, the breast surgeon will perform the nipple and skin sparing mastectomy and a possible sentinel node biopsy, they will turn the nipple inside out and scrape and freeze some cells and hurry them off to pathology and wait for the result in ten minutes. I’m not sure what they will do while waiting. A quick round of Candy Crush perhaps? If the result is negative for cancer I get to keep the nipple. The plastic surgeon will then take over and build the breast with my new implant and give me a bit of hollywood shoozhing. I will be in hospital for 3-5 days and will come home with Exudrains again. You can see a picture of what they looked like last time I had them here. And again a nurse will visit me daily to check the dressings and drains. For a month I will sleep sitting upright in bed as I can’t lay on my sides or stomach. And like last time, I wont be able to run for about 5-6 weeks, perhaps longer given I’m so low from chemo and I will have already commenced radiotherapy 2-4 weeks after this surgery.
They are very happy with the work they did on the left Shittytittie cancerous breast back in January and February. It has healed well and looks nice and perky and radiotherapy should take care of any cancerous cells that may have been left lingering.
With the exception of nerve damage to the breast and arm from the mastectomy and full axilla clearance back in February, I love my new breast, and am quite happy with the 3 o’clock nipple. (Refer to Diagram B below) But in this meeting the plastic surgeon and breast surgeon had a little conversation between themselves while I sat bare chested and listened…
BS : What are we going to do about that nipple?
PS : What do you mean? How far to the left side and how high it is?
BS : Yeah. We definitely need to fix that!
Me : Oh thats okay I have always had nipples that point sideways.
BS : No we really should do something about it.
PS : If she is happy we can just leave it and make the other one the same when we do the mastectomy and insert the new implant with a dermal flap.
BS : Or you could just move it slightly to the centre with another incision.
My Plastic surgeon nodded while closely studying my left breast.
PS: I’m more concerned with this swollen scar tissue at the surgical incision line at the side of the breast. It is very tight. We’ll need to free it up a bit. We could drag it round to make the side of the underarm more streamlined, and that would change the position of the nipple.
Me: What about the top of the breast? It’s very tight when I raise my arm.
PS: Oh don’t worry about that we will loosen that up in the next operation.
The plastic surgeon left the room.
- BS = Breast Surgeon with the amazing shoes and largest diamond I have ever seen on her ring finger.
- PS = Sincere Plastic Surgeon with the hairy face.
- Me = Me with the wonky arsed nipples.
So there is just this small dilemma of the nipple placement. For 37 years I thought my nipples were you beaut perfect. Turns out, the surgeons think they out of the ordinary. Extraordinary even. I have never had front on “beamers” (For those not in the know, Beamers refer to hard nipples, visable through one’s shirt) My lights have always shone out to the sides. Always. But with a lumpectomy and mastectomy and with a tissue expander inserted, my nipple is considerably higher than it once was and it points to the side – like to 3 o’clock if you get my drift. (Refer again to diagram B). The yet to be renovated breast has a nipple that currently points to 8 o’clock so there is considerable work to happen to achieve symmetry. Symmetry is everything in the plastic surgery world. I am a geographical person also, so another description of nipple orientation might include compass points. My left nipple sits east north east and my right nipple currently points south west and the perfectionist breast surgeon would like to see them even and centred. I’m not sure I even care.
For your amusement, below are some annotated diagrams outlining the dilemma. I’m a visual person and I like pictures, but I’m not putting photos of my breasts on this website. Just letting you know now. So below is as good as it gets.
Diagram A: Pre cancer nearly 40 something boobs that have breastfeed two children. These were my “Rocks in Socks”. But they were good rocks, in good socks and they were mine. Before cancer moved into the building.
Diagram B: Post cancer lumpectomy, mastectomy and tissue expander insertion. Here the left breast is perky and larger than the original even though it was never filled or expanded, with a 3 o’clock pointing nipple. Right breast (my right) still the original. I have always liked 3 o’clock, it’s a great time of day.
Diagram C: August planned prophylactic (preventative) right breast mastectomy with immediate reconstruction with silicone implant, making breasts the same with a 3 and and 9 o’clock nipples. Cue circus music. Hideous, someone cover her up! (I thought they would look great!)
Diagram D: August prophylactic (preventative) right mastectomy with immediate reconstruction with silicone implant, making breasts the same with extra incisions to move both nipples more to the centre of breast so that they look like beamer headlights (point forward). (Yawn, can’t be bothered, I thought I looked good already. Mr Cool will find other reasons to leave me than my outward pointing nips.)
Now I am left feeling a little confused by the options for my wonky nipples. Is it really a problem? I can’t have people sniggering at my high and sideways pointing nipples when I go topless on St Kilda Beach after all of this is said and done. Maybe I need a tummy tuck too? My stomach points to the sides as well. Can they do that at the same time? I’m guessing I’ve got two weeks to decide whether I want them touching and moving my nipples when I next meet them and sign consent forms for the surgery. These first world problems get more ridiculous as we ‘advance’ as a society. Advance being a highly debatable word.
For this fortnight, that concludes the great nipple position, freak show, circus saga.
On a more serious note, I will be back to the big smoke in two weeks to see a psychologist about undertaking my prophylactic mastectomy. Apparently anyone who has one must see a psychologist first. Not to approve or deny the mastectomy, but just to talk though the issues around the taking of a breast that doesn’t yet have cancer in it. Do I see it as an amputation of a body part? Will there be any adverse psychological effects of this decision? I had a breast removed already, and I am very ready to let the other one go as well once chemo is complete.
My pathway through treatment has been complicated. After I was initially not likely to require radiotherapy, post mastectomy pathology revealed I probably should have it (Multifocal, grade three, one node, tumour close to chest wall, want to live as long as possible, have young kids etc) which has put a bit of a spanner in the works for how we move forward.
I am presently unable to have an MRI on my breast because I currently have a tissue expander with a metal magnetic port in my chest. Being in a MRI machine would be a bit like sitcking a ball of metal in the microwave. I have had mammograms and ultrasounds of the second breast. They have come back clear. Yet the surgeon has twice raised the prospect of doing a Sentinel Node Biopsy (SNB) to be sure to check the lymph nodes. She said I would be very unlucky to have cancer in the lymph nodes of my right arm given I am on chemo at the moment , but it does happen even when no cancer is detectable in a mammogram or ultrasound. Once the mastectomy occurs, diagnostically they cannot do an SNB because that involves injecting the breast with both radioactive contrast and blue dye and imaging it prior to surgery and then removing the nodes involved to check for cancer (see my previous post “Blue Dye” for a description of this procedure), but there is a risk of lymphodema occurring in the right arm, and I’ve already had all of the nodes removed from the left arm. So having two arms at risk of lymphodema is not a great prospect. The alternative is to take a chance and do nothing with the nodes. So another decision to make as well.
Of course, I am wondering if the surgeon’s picture will be used in some hideous nipple placement photographic presentation at some plastic surgeon’s circus convention. Roll up, roll up to see the lady with the mismatched 3 o’clock and the 8 o’clock pointing nipples! To be fair though, someone who was wearing designer 6 inch fluorescent pink stilettos (kicking myself I didn’t get a picture) has created this uncertainty about my nipples in my mind and it wasn’t my hairy plastic surgeon. To move or not to move. It’s not like I have any breast sensation left post mastectomy anyway.
Just call these growing waves of unsettled thoughts I have to make decisions about my “Nipple ripples”.
Cue circus music now.
I have been meaning to write this post for nearly two months but have been sinking deeper and deeper into my chemo induced psychosis, which rather unfortunately happens to feed my sarcastic, bitter and twisted nature quite nicely, so here goes it.
I haven’t received an award in many, many years. I missed out on getting “Young Australian of the Year” because I was too busy working for a Japanese whaling fleet in the Southern Ocean. Turns out Australians don’t like whaling. Who knew!
There was “The Congratulations You Just Missed Out on Dux of Year Eight Non-Award.” I’m thinking I might have to raise this with the psychologist at this week’s visit as I have actually mentioned this event in a blog already when I wrote Report Cards and Tollways way back in February. So much to talk about!
Then there are the countless competitions. One of particular angst is the second place I was awarded in a baby competition back in the 70’s. Second for f$&k sake! Of course, this would never have shaped my psyche if my oldest brother had not kept bringing it up over the years!
Oh, I did win something, well sort of, but not really.
There was the humiliation I endured when I won the school Easter raffle back in 1989 and was called up in front of a 1500 strong student body to have the Principal of my school say “It is with great pleasure I announce my good friend Lisa has won the raffle. So come up and collect your prize.” My good friend? WTF was that about? My coolness rating plummeted into negative territory.
Incredibly, the prize was an enormous basket filled with 10kgs of chocolate. Hallelujah! Finally I had won something! There was only the small detail that I had not purchased a ticket. So I convinced myself that somehow my awesomely generous, pubescent friends might have purchased one for me. I stood up and stepped over what felt like thousands of legs in the crowd and with flushed cheeks collected the basket which I could hardly hold up. I was presented with the winning ticket under 3000 watchful green eyed peers, shaking hands with my supposed good friend the Principal Mr Charlesworth.
Post assembly, I paid a visit to my mate “Charlie” to fess up that the name on the back of the raffle ticket although technically mine, wasn’t in fact me. There was just the small issue of a different phone number scribbled on the back of the ticket that I had to tell him about. So close, and yet so far from confection glory that I felt like crying me a brown chocolate river. How bizarre was it that someone in my town had both my first name and surname? Upon further investigation, it was someone’s auntie who was to be the rightful recipient of a basket full of type two diabetes.
All was not lost. My honesty earned me a reprieve from hell and a 150 gram Humpty Dumpty Cadbury Easter egg from Charlie and a round of applause from inside the teachers staffroom at morning tea. This Humpty Dumpty chocolate reward for honesty, incidentally weighed more than my removed Shittytittie cancer filled breast that inspired the creation of this blog. Will never look at Humpty Dumpty Easter Eggs in the same light again.
So as we roll forward 24 years, here I have received a very unexpected award.
THE VERY INSPIRING BLOGGER AWARD
Her blog catch phrase is “One girl, two boobs, a genetic mutation and a big decision” Tricia is a very brave women who as a BRCA gene carrier chose to have a preventative double mastectomy to reduce her chances of breast cancer by 90% long before Angelina Jolie hit the news. Her foray into blogging began at around the same time as mine. But her experience with this insidious breast cancer disease unfortunately entered her life much, much earlier. When in her words…
My mum contracted breast cancer at 43. I was 17. Mine and my family’s world was rocked. My mum on the other hand had an eerie inevitability and acceptance about the diagnosis. As though she always knew this day would come. Her own mum died at the rip old age of 53, and there were a couple of Aunty’s in this genetic cancer pot also. 3 years later, with a 2 year respite in between, she was dead. Ravaged by a cancer so aggressive it ran through her body like wildfire.
So thank you troutledge. I really am chuffed and I gratefully accept the award, albeit I’m a little delayed in my gratitude. Chemo has a way of shrinking gratitude as well as healthy and cancerous cells. They left that out of the chemotherapy brochure. You can read about her journey at http://imgettingmyboobsoff.wordpress.com
This is what she wrote about my award nomination….
Lisey writes about her journey with breast cancer at 37 on https://shittytittiebangbang.com/. Her humour and courage is incredibly inspiring and I love her Shittietitttie Chemo Cuts Reveal Challenge. The challenge inspires people to make positive changes in their life and share their commitment with others. Every time ten people share their commitment, she gets a new haircut. And despite sporting new locks that would challenge the best of us, she always looks sensational. https://shittytittiebangbang.com/2013/04/08/the-shittietittie-chemo-cuts-reveal-challenge/.
One of the conditions in accepting this award is to tell people 7 things about myself.
- I am 38 and live in Australia with my Mr Cool and two gorgeous little boys who are 5 and 2.
- I studied Japanese language at university 20 years ago. One of the many
usefulphrases I retained … include “go to the second set of traffic lights and turn right.” I kid you not!
- I came very close to being a victim of the Frankston Murders serial killer in 1993, when I ran in a remote bushland reserve on my own at the same time the killer was stalking out a young woman to be his next victim. I remember his car in the parking lot.
- I applied for a reality TV show called “The Colony” about 10 years ago. In it people went and lived in the Australian bush for several months in authentic dress, eating a colonial diet that they hunted and grew themselves, building huts to live in, and beginning a working farm, essentially recreating the past. I was secretly heartbroken when I didn’t get an audition for it.
- I nearly drowned in the Murrumbidgee River when I was on a holiday with one of my primary school friends at about the age of 10. We were swimming downstream of a weir and the floodgates opened. I was rescued by a man and as a result I always feared swimming in rivers and the ocean which made a career in Outdoor Education challenging at times.
- We live with two whippets, one of which is more successful at forecasting storms than the Bureau of Meteorology.
- No place makes me happier than the Australian Alps in winter. Especially climbing out of a snow cave on a sunny morning with fresh snow. Unfortunately, my husband prefers budgie smugglers and hot beaches.
The other condition is that I have to nominate other bloggers and tell them about it.
So my nomination goes to MAGSBLOG. Magalie has created a wonderful cartoon that depicts each stage of her breast cancer journey. It is so worth following by going to MAGSBLOG. Magsblog was the first EVER blog I came across post diagnosis when I searched Google, long, long before I even set up my own. I composed myself and said… so I have breast cancer. What is this breast cancer lark about anyway? Better see what Dr Google has to say and luckily MAGSBLOG was there with her almost cheerfully colourful depictions of something that was just so God Damn awful! Her cartoons helped me navigate through the crazy maze that is the beginning stage of a breast cancer diagnosis.
Originally from France and now living in Sydney and caring for a young child in her thirties, Magalie’s story has really resonated with mine. Her cartoons are beautifully illustrated and I just love how she has chosen to document this journey. So to her, I pass on the VERY INSPIRING BLOGGER AWARD! So head on over and make sure you follow her excellent blog at www.MAGSBLOG.com
In January I was laying in a rolling green field. The slight breeze moved my hair across my brow. I was enjoying the warmth of the sun as it licked my skin and was listening to the birds. I marvelled at the peace and beauty around me. I was blissfully unaware of what laid ahead. I was right where I wanted to be in my life. I had exciting plans. Life was great!
Then, out of nowhere, a big red balloon drifted into my view and crash landed in my field. Incredibly, the greatest people came running from all directions to help. For months, they held on with me for dear life.
Then came the moment where they had to let go.
Now I am left dangling from my red balloon, floating away with it, being moved wherever the breeze decides to blow. A bit like this…
Luckily, I live with an amazing family and have lots of great friends and an exceptional psychologist. Although this psychologist doesn’t have coffee and biscotti waiting when I visit as I once hoped for. This is just as well, because since last weeks chemo I feel like I drank a pilcher of broken glass. My love affair with good coffee and cafe baked-goods is over. Well, most foods and even now water actually.
Instead, when I visit my psychologist, there is this incredible blue velour chair from the 1970’s that I get to rest in. And for those moments and for days after I leave, holding onto the red balloon is not so bad. I am reminded that people can’t hold on for me. I need to ride it myself.
These visits are allowing me to float with that red balloon. It is true, I am gripping tight to the rope, but I am not fighting it. I am going where the balloon takes me. Travelling though all of the emotion, the grief, the anger, the loss of control, and the rapid change that is currently occurring in my life though this experience of cancer. I am letting the depression procession catch me. It’s okay to stop running from it now. It’s okay to move through each natural process. Being aware of when I am looking at the world through this depressive lens can help me to climb free of it. It’s just a perspective after all. Thankfully visits to the comfortable blue velour 1970’s chair are helping.
This chemo round has not been pleasant. On Saturday I spent the day in hospital. Thankfully not neutropenic, but physically and emotionally bankrupt. Four days after my fourth round of chemo (my first dose of Taxotere) and I required some antibiotics and 6 litres of IV fluid. Some serious pain meds were given to subdue the men with spears that have been stabbing my bones in surprising places; my ankles, my jaw and molars, my kneecaps. These men were silenced by my old friend Endone. And then, ten hours of sleep saw me well enough to rejoin my family at home.
In the depths and despair of the effects of chemotherapy, I am learning to cope. I am learning to acknowledge my feelings. I am learning to go easy on myself. I am learning to turn off the noise and relax. I am learning to survive in this new state of normal and learning not to have expectations. I am learning to take one day at a time and not look too far ahead. It much easier this way and in doing this I am feeling better already.
There are some difficult times ahead. This red balloon will be taking me for a ride for quite a while yet.
Everyone has a big red balloon enter into their field at some point. Some people will unfortunately experience quite a few through the passage of their life. Relationships break up, we lose people we love, houses burn down, we lose jobs, we get cancer. There are the near misses too. But we are all presented at some point with difficult circumstances that result in our own internal struggles.
These red balloons come crashing into our existence when we least expect it. But they don’t last forever.
I always intended to write honestly. So here I am.
I am now half way through chemo and there has been surprisingly a full week of nausea this time. There are mouth ulcers. They come and go. Chemo really is an accumulation of detriment on the body and mind. The immune system, the digestive system, the emotional system. I have had thoughts about not being able to go the distance with this treatment. The dread of three more rounds and the unknown of a new drug Taxotere for the next cycle. Then some new days brings a more positive attitude and I get on with it.
I have lost interest in food. Lost interest in handling it, purchasing it and preparing it which makes the task of running a household interesting. I could be served cardboard or raw oats for the rest of the year and I don’t think it would phase me. Part of me wants to go to the finest restaurants and conquer this disinterest. But it might be a waste of time at the moment.
The “Depression Procession” is rapidly marching my way. Some days I feel like I’m at a blues festival in New Orleans trapped in the crowd, trying to get away from the sombre marching band that is approaching. But no matter where I turn, the music just keeps getting louder and louder. And it’s out of tune.
Something has changed in me. I can’t quite put my finger on it. Four months has passed since my life took a turn in a different direction. When I face people now and interact with them in everyday conversation there are tears welling behind my eyes but thankfully they don’t spill out.
I am sleeping longer. There are moments when I am less interested in being with my family. Yet when I am given solitude I just feel isolated. I am having loads of thoughts about this disease and about the changes in me since Christmas. There are some irrational doubts about whether I will ever get over it. It’s very easy to be swept away with the tide of chemo induced nausea. Let the negative thoughts creep in. I have found myself thinking thoughts such as … I’m such a burden, sometimes it would be easier for my family if I wasn’t here. I’m not working. I’m not productive. I’m getting left behind in life. Irrational thoughts I know. This must be the cancer experience. Four months in and the wheels have stopped moving. The survival mode of running with it has switched off and you are just left to get on with it. With reality or this ‘new normal’.
At a prep info school night I started to cry. Bam! Out of nowhere! Waves of emotion flood in like a tsunami when you least are expecting it. It occurred to me that it is possible I might not see my boys finish their primary schooling. See their sports days or see them come home exhausted from camps. I had to look at my partner and stop this train of thought. And when the prep teachers where delivering their Powerpoint Presentation of the school to new parents, I wasn’t listening to their words, I was looking at their breasts. Wondering it those breasts would always be healthy for them. The triggers are surprising.
I am lamenting all the things I have lost this year. Yet I am conscious of all the things I have gained. It’s just the mind has been wandering towards the deficits a little more often this week.
I have been thinking about these oceans of distance that have emerged with friends that were once part of my everyday life, friends I used to have weekly contact with. People I have not even received a text message from since I was diagnosed. Funny how this disease scares people so much. It is hard on everyone, friends, family, workmates. Staying away is the worst thing anyone can do to someone diagnosed with cancer. I read about this alot and I understand it now.
I’ve got a bucket load to talk about with the hospital psychologist. Four months of stuff in fact. The appointment can’t come soon enough!
All of this is part of a process. The mental perspective is taking a beating. I am acutely aware of this. I will continue to move my body through walking and running when I can and talk to people and even let myself cry when the context is right. Just not at prep info nights.
I will bounce up again. I always do. It might be tomorrow or it might be in the springtime. But bounce I will.
On a chilly day with clear blue skies and the kind of fresh crisp air I expect from autumn in my city, I drove into town with my hungry kiddies in the back seat. We went to get petrol after the fuel tank kept singing to me to fill it.
“Mum what’s for lunch? I’m starving!” says Mr 5 year old. I get out of the car and proceed to fill the tank. The smell of fuel fumes fills the air and I am reminded why I hate this job. Maybe fuel fumes cause breast cancer?
A Holden Commodore pulls into the fuel bay opposite me. A tall brunette in her mid forties dressed in business attire gets out of the car and selects her fuel. Both of our bowsers are pumping away. Two cars park behind us as drivers get out and proceed to fill their cars. The brisk air is saturated with the fuel fumes. The lady at the bowser opposite funnily has the same haircut to my Shittytittiebangbang Chemo Cut three. I am amused.
My focus shifts to the conversation inside my car between my two and five year old that goes something like this…
The five year old says… “I am so hungry, I could eat a house. What could you eat?” To which the two year old replies… “A house… Yay!”
The lady at the pump opposite us interrupts my humoured disposition at my children and yells out something out about a look. I didn’t quite hear. I thought she was talking about my kids making me smile with their antics so I just politely smiled and nodded. She then yells out really loudly “So what kind of cancer do you have?” I’m a little shocked at the direct nature of the question. So she walks across the fuel concourse towards me and yells out again “What kind of cancer do you have?” Pow, crash, boom!
I managed to clear my throat and mouthed the word “breast”. I thought I spoke but not much sound came out.
She nodded and said “Oh I thought so.”
I wondered how? Did I give off some kind of potent breast cancer pheromones that overpowered the fuel fumes? Surely the purple hat that my awesome girlfriend just sent me that I’m wearing for warmth is not that revealing? Obviously it was. Maybe my new cancer-y look is more pronounced by the fact my face is brown and my bald head is pearly white. The hairline separating the two is very prominent. I’m like a choc chip muffin with white icing most days.
She then says … “I had breast cancer ten years ago.” I said “Sorry to hear you went through that.” She then yelled back to me as she went off to pay “Finding work since has been very hard!”
This drives home just how life changing this experience is and how different everyone’s experience of it is. I thought about what it would mean to me in future. Why would this experience impact on my ability to work? After the diagnosis I’ve had, the lumpectomy, the mastectomy and reconstruction, and chemo, and the treatment plan that is layed out ahead, am I so naive as to what could lay ahead? After all, I’m feeling pretty good through all this.
My fuel tank was really empty because I was still pumping when she had paid and walked back to her car. This time she asked “Where are you in your treatment?”
I was still grappling to understand how this conversation in the petrol station had spontaneously started so I stuttered “I just started chemo and I have a busy year of treatment ahead.” She reassured me… “You will get through it as I have. It’s hard but you’ll get through it. But I don’t know how you do it with children!”
She got into her car and was gone before I hung up the bowser.
To be honest I don’t know how I’d do it without children.
Why is it that having a cancer-y looking head gives permission for complete strangers to yell out private questions about chronic diseases in public places?
I thought of many a conversation that could happen but doesn’t in supermarkets, between the bookshelves at libraries, between pumps at service stations. Hey! How’s your heart going? Hey, have you had your prostrate checked? How’s the herpes going? Got a bad case of alopecia have we? Conversations that don’t happen ever. Especially between two strangers standing 8 metres apart pumping petrol.
Then there is the flood of knowing (sometimes haunting) looks from older women standing behind me in in grocery lines. The look of sadness from people waiting in the passenger terminal at the airport. Cancer elicits some interesting responses from people.
I’m not ashamed of cancer. I don’t mind talking about it. But when I am taken by surprise it is very unsettling.
I’ve gained membership to a club I never filled out a membership form for. And in all this rapid change to my life I haven’t yet found my place in it. Am I being presently cured of cancer, am I living with cancer or am I surviving cancer? I have no idea what I am at the moment. Can I say when someone asks if I have cancer… “I don’t have cancer anymore” as the tumour and offending breast is gone? I’m not sure if I’ll ever be able to say that when I think of invasive cancer on a molecular level. The fear of recurrence will be with me always.
This is confronting to me as most days I forget about cancer. But now everywhere I go there are reminders of who I currently am… at the checkout, at the petrol station, in the park. And I am bumping into breast cancer survivors like we are all holding a huge sign that says “my breast had cancer and this experience has changed my life!”.
I am reminded of the night my whippet jumped the fence the week before chemo started. I had gastro and had had the mastectomy and reconstruction and 21 lymph nodes sliced from my armpit 6 weeks prior. I was drain free and weeks earlier the same neurotic dog had caused me to rip out a drain when another storm came through and he shivered and shook all night next to me with fear. On this recent night, at 3am a huge thunderstorm started. Minutes later, our neurotic whippet had broken out of the shed leaving the warmth of his sister, futon bed and doona behind in favour of the dark, wet and stormy night and jumped our 6 foot fence into the gully behind our house. After staggering around weak from gastro in the dark and rain calling for him for an hour I barely had enough energy to walk back up the slope to our house. Mr Cool got up and drove the streets searching for him and at 7am I received the call. He was in a yard of a house on the other side of the creek no more than 100 metres from our yard. When I went to pick him up I explained he normally sleeps inside on stormy nights but I was still recovering from surgery and unwell so he was locked in his shed and broke the roller door to get out. Turns out he chose the house of a woman who had breast cancer back in 2007.
So I am starting to think I might just bump into every woman in my city who has survived breast cancer by the end of this year and there are many of us. It’s like my future self is telling me that I will get through all of this as all of these women have done. But the hardest thing is meeting a survivor who knows. Knows how hard the journey is and seeing this ‘knowing’ in their faces. As I stood on the porch of a house across the creek the lady who had my dog also had this knowing look. Like the wrinkles on her face were a little deeper from the experience.
There appears to be two groups of survivors emerging and of course this is a oversimplification. But there is the group that have reevaluated their lives and healed themselves. And the group that is broken by the ordeal and will never be the same. Both live in fear of the cancer returning but one group uses it to fuel an existence of not wasting time in life but living every day fully and with gratitude. At the moment I identify with this group. The second group is caught between the why me? Why did this happen? My life will never be the same! There is a lot of bitterness for what has been lost. About the change to where they thought their life was headed.
I am yet to know which team I’ll stand on. I’d like to think the first team. There is a lot I have control over but there is so much I don’t. Such as how I will respond to the second drug regime in chemotherapy, or what the side effects of radiotherapy will be. Will my implant survive radio? How my body will respond to tamoxifen? Will this disease come back?
So far I am coping remarkably well. But if I am here in 5 years or 10 years or 20 and call myself a survivor of cancer, I want to be able to say to young breast cancer women that it is your journey and your experience. Make of it what you will. Don’t play the part of breast cancer patient. Play the part of you.
But after a spontaneous conversation with a lady in the servo and being stopped by airport security because of my threatening cancer-y head covering scarf today, I think it might be time to visit my psychologist to have a chat about these different teams that are emerging. It’s not a matter of which team I’ll join. But perhaps it’s about making my own third team and of letting go of how things used to be and embracing this change in a more positive light. We can also discuss this other phenomenon which I’m going to call ‘stranger danger’. These are the pow, crash, boom moments, where cancer is smacked in your face like a huge wet fish by total strangers. It’s amazing where the unsettling comes from. Places where you least expect it.
Since Sunday, I have spent time with three very important women in my life and I have broken down in tears with each of them. There has been a mental shift since the weekend of wonderful experiences with my awesome Melbourne friends.
I visited my dear Nanny who turns 90 in April. She never ceases to amaze me. She was 52 when I was born. There was so much living that went on in her life before I even met her and she is still with us. She has experienced her fair share of loss from cancer in recent years. But she is a strong and upbeat lady. Her sunny disposition and genetic luck has allowed her to live a long life, much of it without teeth. In the late 50’s she had a dentist in London remove her ailing teeth to prepare for dentures, except she immigrated to Australia on a ship earlier than anticipated and the dentures never became a reality. Her sweet sunken cheeks have always been the vision of the perfect Nanny to me.
I had a visit from my awesome sister in-law who played lifeguards with my children for hours, rescuing imaginary swimmers from imaginary sharks in our garden. With credit to “The Octonauts” children’s television program, the species of sharks were diverse. From the surf lifesaving tower on the deck they took turns at the command post talking into pretend walkie-talkies. This was to the delight of my eldest son who had not removed his lifeguard cap for three days prior. She cooked us dinner and cleaned our bathrooms before she raced back to the airport for her return flight to Queensland. My brother chose for himself an amazing life partner and mother for his children.
I also had a pop in visit from my wonderful mother in-law yesterday as I frequently do to see how we all are. She has the knack at turning up at the most perfect of moments. She has a kind of sixth sense of sorts which I am eternally grateful for.
There is something very powerful about embracing another woman that you care for when you have breast cancer. The disease is taken very personally. It sniggers at the qualities that make us mothers, daughters, sisters, aunties, nieces, grandmothers and granddaughters. It attempts to sabotage a bond between women. But cancer can never get in the way at that. An experience like this just draws people even closer.
Even as I type this the tears are welling a little behind my eyes. I’m thinking this may be the start of the depression procession of sorts, or it might not be. I just have to watch where this goes and act quickly. The breast care nurse told me not to wait, but to see my GP for some anti-depressant medication. I have never dallied with anti-depressants in my life, but I was given some post diagnosis and one of the side effects made me anorexic. So I understandably have some trepidation. I first would like to try my own ‘walk and talk therapy’. This is where I walk for an hour daily, and talk to as many people as possible about how I am feeling. I am now fit enough three weeks post mastectomy to get out and move again. I can’t yet run as I am still healing and the tissue expander is settling. But exercise has been so beneficial to my moods in the past. I think this might help me immensely. I might also see a psychologist to have a chat, though I think psychologists should have really great coffee machines in their rooms. Maybe even some biscotti or something. That might help too.
Part of me is wanting to rebel against the predictable pathway of the breast cancer experience. I am seeing this common journey that women take on forums and blogs and in the knowing looks of women sitting in hospital waiting rooms. Doctors and nurses are quick to try and solve the problems for you. Often with medication. But it is just going to take time. Emotionally I will fall apart. It is a given. But I will put the pieces of myself back together again. Of course it is easy for me to articulate this at present, as I haven’t yet been gripped by the effects of chemotherapy. But this needs to be ‘MY’ journey. I don’t want to be told I will get depressed. Or my hair will definitely fall out. Or my nails will turn black and fall off. Or my bowel will never be the same. A self fulfilling prophecy effect will have no part in this. I need to let the experience unravel itself.
It has been two months since this cancer wheel started spinning. It has been a bit like being on a spinning ride and the Royal Show. The Gravitron ride was a favourite when I was younger. It looks like a spaceship and you enter and lean against the wall. You are propelled round and round with such force that you just grip on as tight as you can. You can’t really move as the force is too great. And then as it slows and gravity takes hold, you see the people opposite pulling their dresses back down to a respectable place and wiping saliva from their faces. Slowly but surely, everyone is back in the land of gravity, or should I say reality and the dance music stops. Then everyone gets off and gets on with things. Suddenly, since the surgeon, plastic surgeon and breast care nurses dumped me, I have all of this time on my hands to think about what has actually occurred in the last eight weeks.
To add to this reality, today I met the geneticists from the Peter Mac Familial Cancer Clinic. There were two people. Geneticist One was nearly seven feet tall and wore glasses. He was an enormous graceful giant. His height may have instilled in him an interest in how genetics worked and this may have been motivation enough to follow this career path. He reached out with his gigantic hand and softly shook mine. We walked the corridor side by side and went into a consult room. As he stooped through the doorway to enter the room I expected to see a beanstalk and a golden goose. But there waiting behind the door was a genetics counsellor. A stunningly beautiful girl, fresh from university and dressed impeccably. She presented a set of perfectly pursed lips painted with a deep red lipstick. I so wanted to get out my iPhone and take a picture. A new obsession perhaps? For a while I found it hard to absorb what she was saying because of her lips. I kept focusing on how they moved. Then how her wonderfully styled brunette hair framed her face.
I had gone prepared with all of the dates and as much as I knew going back four generations. The information covered relatives from both Australia and the United Kingdom, many of which I have never even met before. Much of this information I compiled by trawling though the work my eldest brother had done on the Ancestry.com website. I am really grateful for his interest in genealogy. I also contacted distant relatives via Facebook, and got some information from my Mum. Armed with these pages of causes and dates of death and existing illnesses I marched confidently into the room. Impressed with the research data, the gorgeous red lips asked me if I was from a research background. I told the lips that I used to be a teacher and lecturer and I love to research. I thought I was just going to supply them with information about my family cancer tree today. Easy.
I was so naive.
I had not prepared for the level of emotional and intellectual drain this meeting would entail. The beautiful woman in front of me was full of information. But there was a deliberate tilt of her head which revealed a kind of pity to me. She obviously thought she knew where my journey was heading. Like she has access to a crystal ball or she has seen this journey many times before. Talking with the broken about their potential mutant genes as they are gripped by this disease, as they search for an explanation as to why they are afflicted. So I decided not to focus on the head tilt anymore.
After looking through the details of my family cancer history, there was discussion about gene faults that if found would put me at a higher risk of developing breast cancer in my other breast. Then they pre-empted a discussion that I might be having with my oncologist in weeks to come, this time about my ovaries. If I test positive for one of the BRCA 1/2 genes, breast cancer women under forty are advised to have their ovaries removed. There was also discussion about multiple potential gene faults merging to have created some crazy mutant genes that can cause young women under 40 to get breast cancer. I don’t really need to know about this. I can’t prevent what is done.
What does all of this mean?
The reality is that only 5 to 10 percent of tests come back positive for some genetic link. Many responsible genes and genetic mutations have not been discovered yet. Though there is certainly a chance that in 15 years researchers will have discovered more genes at work with this breast cancer disease, if genes are even a factor. It is such a complicated matter how diseases occur in some individuals and not others. The ‘nature versus nurture’ theorists are still pointing their fingers and arguing on the sidelines.
I am informed that my blood sample will be stored and will be used in the future by genetic researchers. I enthusiastically offered up litres of blood for this purpose and this drew some laughs from the Giant and the Beauty. One vial is enough. But I find this research to be positive. After all, this process is how the BRCA 1/2 gene faults were discovered and this has benefited many.
Today, genetic testing might assist some breast cancer women and their practitioners to make decisions about whether they will undergo particular treatments in favour of others. It is also a process high risk women (such as those with one or more close relatives having had breast cancer) might explore to assist them to make decisions to prevent breast and ovarian cancer from occurring. There are many women in Australia and around the world who have spent much of their lives worrying about the risk of getting this disease. There is a whole network of women supporting one another through a great organisation called Pink Hope. It can be found at http://www.pinkhope.org.au. These women cling to the results of their genetics tests. I feel quite guilty given I had never given breast cancer a thought and have been free of the worry these women have had to endure, and yet the disease found me anyway. Here I am, today, with a genetics counsellor talking about breast cancer genetics.
In my case, the decision has been made, given my cancer is multifocal and aggressive there will be a second mastectomy, so I don’t need the results of a genetic test to tell me what I should do. There will be post mastectomy radiotherapy and genetic testing is not a useful indicator for whether to do this. But it might clarify the ovarian issue down the track. If I am negative for BRCA 1/2, it is unlikely the ovaries will need to be removed. This is a really important decision, as removing ovaries prior to menopause can lead to a whole array of health issues in young women such as osteoporosis and heart disease. But if faced with having a BRCA 1/2 gene with a hormone receptor positive breast cancer and preventing ovarian cancer I know what I would chose.
After almost two hours of discussion about genetic testing, information, privacy issues, disclosures, pros and cons, ramifications of it moving forward, etc, I am clear that genetic testing will be a good thing for me and my immediate family, but I will talk at length with Mr Cool about this. I also like the idea that I am contributing to a research data bank.
There is just one small matter to be sorted. Before I can sign on the dotted line, I have to see what the ramifications on my existing life insurance policy are of genetic testing, as it can substantially alter or even void some policies. So I have to look into this before the signing and supplying of a blood sample. Some types of insurers don’t like the risk associated with someone who has tested positive for some genetic predisposition. Bastards! Luckily my ‘future self’ told me to take out a life insurance policy a year ago as I had no current coverage through my superannuation as a stay at home mum. I would be “up shit creek without a paddle” if I wanted to take out a new policy now. Thank you again future self.
Down the track, my family might like to know the results of this test. There is no urgency for any of them now. But if I have any genes responsible for this cancer, it might be beneficial for one of my brothers to be tested. If he has the same gene then as parents, they may impart such information to allow their children to make a decision to be tested when they are adults. Likewise, all of this applies to our own children, my cousins, and my cousins children. This is all irrelevant at the moment but it is worth giving some thought to future possibilities.
Genetic testing is a highly sensitive and deeply personal issue. It does have quite large ramifications for the future. People can use the knowledge about genetic predispositions in many ways. Some might live proactively and live a healthy lifestyle and be screened. Some might live in fear of developing a disease they have a gene mutation for. Some might chose a route of cowardly defeat and live a lifestyle detrimental to health as if they are saying “whats the point?” Some might not ever give their genetics a thought. Of course, there is also the possibility that one could have a genetic mutation for a particular disease and it is never activated in their lifetime. There are no guarantees with anything.
I was glad I had the opportunity to sit with the Giant and the Beauty for two hours. I look forward to my next meeting as it feels like I’m back in the dating game.