My breast surgeon breezes out of the consult room and calls another patient in. Through all the heads in the waiting room she finds me and waves, and there is even a smile. She is obviously glad to see me again. You can call me delusional but I speak the truth. This is my second visit to her in the last 2 weeks after my second mastectomy and immediate recon with tissue expander. It’s breast inspection day and there will even be a saline fill from my bearded plastic surgeon after our consult.
In the 8 seconds she appears outside the consult door with patient file in hand, I drink in as many details as I can. Her hair is lightly tussled. She is dressed in a black tailored jacket with a very short cream frill layered skirt with black sash trim. There are those impressively elegant legs that are finished off with canary yellow stilettos with silver toe plate detail. Spring is here. Gone are the black tights and designer boots of winter. Simultaneously, the track below begins to play in my head like we are in a movie scene. Press play, go on, do it now. Okay, you can pause that at any time.
After a short wait I am called. As I walk through the door I nervously blurt out how fabulous she looks. I am greeted and inspected with the usual efficiency. The operated breast looks good just 16 days post surgery. She snips a stitch that hasn’t broken down. She has taken the cancer, 22 lymph nodes and 2 breasts. Her job is mostly done with the exception of a visit in 6 months and then annual reviews for the next 5 years. Simple.
Next my bearded plastic surgeon enters the room wearing a hospital fundraising, cancer charity, cycling jersey over his usual business attire. As he steps towards me his mobile phone rings with the opening chords of a “bad to the bone” ringtone. Mr Cool and I break out in laughter. He inspects his handy work looking at both tissue expanders that have been inserted six months apart. They are considerably different in size but he isn’t worried.
The exchange surgery next year may include using 2 different sized silicone implants to get visual symmetry. He is happy that the nipple looks like it will survive, making the same comment as the breast surgeon minutes prior. I hadn’t even given that a thought this time. As it blackened from the trauma of the mastectomy and was at risk of infection I just assumed it would be safe like the last time. Then he asks me if I would like a fill inserted into the new tissue expander which is noticeably smaller than the one done back in February. I nervously giggle and nod for I am about to get ‘a bigger one’.
He leaves the room and returns with a 1 litre bag of saline and an enormous syringe and needle. He asks me to lay down on the hospital bed bare chested. He uses the magnetic port finder to locate the port, marks a spot with purple texta on my chest which is still tender from last fortnight’s mastectomy and recon surgery. He then inserts the enormous needle on saline into my breast, piercing through the skin into the port. I don’t feel a thing and he proceeds to fill the expander. First 20, 40 and then 60mls and I begin to feel tightening and constriction in the pectoral muscle across my chest and just under my armpit. I wonder if I can breathe. So I take some breaths to test the vice grip that is tightening around my rib cage.
He says “Make sure you tell me when you are uncomfortable. I don’t want you to be a hero.” I nod conservatively. The sensation of filling fools me into thinking it is possible my chin might just hit my breast when I nod. Lying on the hospital bed I’m not sure what I can tolerate so I laugh. He keeps filling to 80 mls, and I exhale and say… “Yes, yes I think that is enough for now!”
As the pressure mounts it’s like a tightening in the pectoral muscle accompanied with knife pain extending round under my armpit into my back. Very, very painful. He backs off and takes out 10mls and there is instant relief. The volume of two teaspoons. Together we then decide to take out another 10mls which is more tolerable. When he withdraws the needle it feels like I am a rubber mannequin. The body isn’t mine. The needle catches and as it withdraws the expander holds onto the needle tightly, vibrating and pulling.
He has inserted just 60mls in total, the equivalent of 2 shot glasses or 3 tablespoons, depending on if you are a bartender or a baker. I think of those women who have fill after fill of half a litre in each expander and greater. And those women who go through this process for cosmetic reasons. Cancer brought me to this point so I feel a little differently. I am left with 144mls in my first expander from February and today I lay with 280mls in my right expander. Interestingly, the February breast is much bigger. He assures me the mathematics is not important. The final exchange will work out the symmetry.
After the procedure, I need help getting up off the bed and look at my chest in the mirror. The breasts now look quite even. Mr Cool helps me with dressing as my arm and chest are not sure how or if they should be moved. We very slowly walk out of the hospital as I experiment with new strategies for breathing. We dawdle to one of our favourite city lunch spots. On the way Mr Cool and I debate about who my plastic surgeon was speaking to when he answered his bad to the bone ringing mobile. I envisaged him talking to his daughter about his grandchild going to sleep. Mr Cool felt it was a patient going to sleep in surgery. It doesn’t matter who is right. We are hungry and I don’t know if I can even lift or move in particular ways or even eat with the sensation of just 60mls. I wonder how on earth I will make the 150km journey of bumpy roads home? For now, the breathing, is okay though. And I intend to return post radiotherapy for another very small fill in late October.
There has been 2 and a half weeks of post surgical pain and recovery. There has been a very conscious attempt not to get addicted to serious pain analgesics. There has been careful management of an Exudrain surgical drain which I am now free from. There have been daily nurse visits to my home, and persistent post chemo and surgical drug induced digestive woes. I have been fortunate enough to have had some wonderful visitors in my home including my mother and sister in law. They are now gone and life is moving forward.
Very soon I will post the retrospective blogs I wrote in the last three weeks. While high on Endone and OxyContin and suffering the after effects of five months of chemo, surgery and the dizziness of low haemoglobin, I lost my blog voice and could not concentrate for any length of time. But I am back with a clear mind. So stay tuned.
I think I am in love.
Today she listened to me. Smiled at appropriate times. There were even outbursts of laughter. I know she would have brushed my hair from my face if I had any.
For this consult she had researched some literature for my individual case. “I know that you like statistics so I’ve done some research for you” she said.
See, she is thinking about me even when we aren’t together. She even answered all of my questions in great detail. Time stood still.
There was an acknowledgement that going straight to implant with this next mastectomy might be difficult. “You fit types with strong pec muscles make it hard for plastic surgeons” she said.
Oh she does make me blush!
She again said “We want you to be around for a very long time.”
Let’s not kid ourselves. She wants me to be in HER life for a long time. That’s essentially what she meant. No illusions necessary here.
We lingered longingly, even though other women had already waited too long in the waiting room.
There was an apology about her criticism of my nipple position at our last consult. “I was getting ahead of myself” she said. She is just beginning to truly appreciate my uniqueness.
This was by far our most successful encounter yet!
I wouldn’t be surprised if I get a post date text message tonight. If only I wasn’t living so far away and wasn’t married, maybe, just maybe we would have a chance. Another life perhaps.
She is mesmerisingly and extraordinarily impressive and out of respect for her privacy, I’m not posting a picture of her shoes today.
Can’t wait for our surgical date! August 13th is just so, so far away.
The image below depicts installing a zip to the side of my breast, criss crossing it with black pen, and watching black arrows explode from my nipple. Well not really. More like location of the incision site, removing all of the breast tissue and scraping the inside of the nipple to test for cancer while still in surgery, and taking it off if it tests positive for cancer. That my friends is a nipple-sparing subcutaneous mastectomy right there.
Driving to the big smoke this morn to have boobie two squeezed in the prized George Foreman grill. This will be my LAST EVER Mammogram! I can hear your jealous minds ticking over… “Lisey will be free of mammograms… wow wish that was me!” See, a breast cancer diagnosis has some merits. Wouldn’t want to squeeze implants in one of those things. They could burst like a pubescent zit! Ewwww!
Then, I’ll move onto a little cold lube up for my last breast ultrasound before my prophylactic skin and nipple sparing mastectomy surgery next month. Four weeks post last chemo infusion (this Tuesday peeps – mark it on your calendars!) I’m back under the knife, back in theatre with the bearded nurses and the drugs that make me hallucinate. Yee hah! Unless they find cancer today, and then I could drop the “prophylactic” term from my sentence. Which would be great cause that word is hard to type on an iPhone.
I can’t wait to do all of this dressed only in my undies and a hospital gown that opens at the front. Especially since I’m wearing a pelvic belt after Taxotere chemo has giving me the worst sacroiliac sprain and arthritic flare in my lumbar spine of my life and I’ve been hobbling around for 10 days. I spent a few days worried that breast cancer cells had moved in and metastasized. Just call me a “cancerchondriac”. If the mammogram lady asks me to contort myself like a Russian gymnast there is going to be trouble. Does anyone know any Russian swear words?
I visited the surgeon for a breast review 5 long weeks ago and we had conversation that went something like this… “You know Lisey, you can take photos of my shoes but I don’t want them to go on the Internet or anything.” So I’m guessing this will be the last one.
Wish me luck.
Goodbye, boobie two’s day, who could hang the blame on you… Girl I’m gonna miss you.
I met my replacement oncologist the other day after my original oncologist went to Italy on leave to study breast cancer. I wonder if Italian tumours are any different from Australian ones? That awesome Mediterranean diet and lifestyle obviously isn’t enough to prevent breast cancer there either.
I have begun preparing for his return later in the year. And in order to converse more adequately with him about what he may have learnt in his time away from the great priority of saving my life, I have prepared a brief Italian/English translation list. I’m sure there could be quite a niche market for Italian and English speaking breast cancer patients to converse in breast cancer clinics across Melbourne. After all, Melbourne has benefited greatly from the post war Italian Diaspora. An additional benefit of this is if I happen to visit Melbourne’s culinary Lygon Street, I’ll be able to tell some of the restaurant owners and chefs what has been keeping me busy in the last few months. So here it is…
My Incredibly Useful Breast Cancer (Italian – English ) Translation List
- Cancro – Cancer
- Tumore – Tumour
- Carcinoma Mammario – Breast Cancer
- Ho il cancro. – I have the cancer.
- Radioterapia – Radiotherapy
- Chemioterapia – Chemotherapy
- Teste calve sono il nuovo nero. – Bald heads are the new black.
- Ho leccare lavica ulcere della bocca. – I have licking lava mouth ulcers.
- Oh Signore per favore fermare il mio cuore batteva da corsa! – Oh Lord please stop my racing, pounding heart!
- Che diavolo hai fatto a me oncologo? – What the hell did you do to me oncologist?
- Il cancro è un bastardo! – Cancer is a bastard!
- Vampate di calore! – Hot flushes are a bitch!
- Per favore qualcuno mi spari adesso! – Please someone shoot me now!
- Protesi mammarie puntano alle stelle quando, recante. – Breast implants point to the stars when laying down.
- Petto di espansori tissutali deve essere stato inventato da un uomo. – Breast tissue expanders must have been invented by a man.
- La pizza – Pizza
- Caffè latte – Cafe latte
- Hai avuto un grande testa a forma di. Im piuttosto mi sorprende! – You have got a great shaped head. I’m quite surprised!
- Wow sei bellissima per qualcuno che ha il cancro! – Wow you look great for someone who has cancer!
- Contrazione capsulare può baciare le mie grane! – Capsular contraction can kiss my grits!
- Tamoxifene è una mucca necessay. – Tamoxifen is a necessary cow.
- Dimenticate pre e post menopausa, la menopausa è ORA! – Forget pre and post menopause. Menopause is NOW!
- Steroidi succhiare! – Steroids suck!
- Dexamethosone può mordere me! – Dexamethosone can bite me!
- Chemioterapia è craptastic! – Chemotherapy is craptastic!
*Please note, I’m getting the last eight quotes imprinted as t-shirt slogans for breast cancer patients. I might even extend the range for all cancer types.
My new oncologist has helped me get over the resentment of being dumped for some breast cancer sabbatical (read Mediterranean holiday). Fortunately, she is a wonderfully endearing and gorgeous Laura Linney look alike, except she’s a decade younger. Laura played Truman’s wife in the film “The Truman Show” (1998). I have always had a special place in my heart for her as an actor. Sometimes in the writing of this blog I feel like Truman, as people are waiting for the next instalment or expressing to me that they feel they know me more intimately through the writing and more than they do in real life. This is both bizarre and funny at the same time.
Extraordinarily, I only just made the connection that Laura Linney played the lead in “The Big C” (Click here) television series, as a woman called Cathy living with stage IV melanoma. In an interview for the Los Angeles times last October (click here) she revealed why she was drawn to such a role…
“I was very aware of cancer from a very early age because my mother worked 12-hour shifts at a cancer center in New York for much of my childhood years. And seared in my memory is her dressed very much in the way I was dressed in “The Truman Show,” actually — it was in the ’60s, and there were the stockings and the white shoes and the little hat. She really looked like an angel to me. And she would become very close to the families she was working with, and sometimes people would get better and sometimes she would come home and burst into tears because someone had passed. I became close to the families as well.
So I learned a lot about how no one is entitled to a long life. I mean, you hope for it, but it’s not a given. And it affects the entire family. And it affects the people working with you in hospitals, and it’s never far away. That someone going through a struggle, a real struggle, is not far away, no matter where you are or who you’re talking to, if it’s not right in front of you, it’s one step away. It’s always made me very aware that I never know what someone’s going through, so I tend to give a lot of people the benefit of the doubt.”
So there I was, having met my replacement oncologist for the term of my chemotherapy. And she is the splitting image in both appearance and mannerisms of one of my favourite actors who happens to be the lead in a series called “The Big C” and whose mother was a nurse in a cancer hospital. Uncanny, don’t you think? Who would have thought I’d get to trade my original oncologist for many future candid and endearing discussions with a gorgeous version of Laura Linney. Things have a way of working out! And just for the record, I have not watched the show Parenthood yet. Okay!
After the hideous side effects I experienced from my first round of FEC -D chemotherapy, my real life version of Laura Linney, the oncologist, assures me such side effects are normal and I am apparently doing very well. I have been given the go ahead to keep exercising. She has promised to reduce the dosage of steroids for my next chemo round to reduce the agitation I experienced and prevent me from pacing the hallways of my house at all hours as occurred for 5 days with infusion one.
The steroid Dexamethosone is used as an anti-nausea drug for cancer patients and is given in the days after chemotherapy is administered. It is also extensively used for a range of other medical conditions. When taken orally, it is 26.6 times more potent than the naturally occurring hormone cortisol. Like I need any more of that stuff in my body! Since my nausea was only terrible for one day the dosage of Dex as it is affectionately referred to in forums has been reduced. Hopefully the agitation won’t be traded for days of nasty nausea. I would hope the other four nausea drugs I take will be enough. Tuesday morning will reveal all when I visit the hospital for my second health spa experience in three weeks. Living it up. Go Me!
Miss Linney has also agreed to delay my third round of chemotherapy by a week so I can support Mr Cool in his tenth Ironman Triathlon quest and have a long awaited holiday with family. We have been planning this trip for a year. Delaying chemo is not the optimal gold star treatment standard, but it happens all the time for a variety of reasons and she assures me that a one week delay is okay.
I am one busy stalker with all of these wonderful cancer treaters and healers coming into my life.
Love you Laura!
Just for kicks… here is the lovely Laura Linney as Truman’s wifey.
I have developed a complication of lymph node surgery called cording. It’s where the remnants from the surgery form scar tissue that clumps to structures within the arm, significantly reducing range of motion. Up until this week I have struggled to do most tasks that I previously took for granted such as hanging out washing, reaching for tea cups, lifting children, straightening the arm fully and pole dancing. My useless ‘fully axilla cleared’ arm makes pole dancing really difficult so might have to give that a miss for a while (wink, wink)!
This complication has allowed me to meet a Physiotherapist with dreamy hands who is my vision of Snow White. Her perfect porcelain skin is framed by long hair. Rather fortunately and to my delight, through some hospital error I am checked in at the Radiotherapy Department reception which is where Snow White comes to meet me. Together, we get to walk all the way across the hospital to the physiotherapy treatment rooms on the other side. We spend a lot of time walking the corridors alone in transit getting from one department to another. The times waiting for lifts were a little awkward on the first visit. What will we talk about? The weather? How slow the lifts are? There were some awkward silences at first. But today I made her laugh twice and hasn’t yet cottoned onto my stalker tendencies.
My Snow White is getting in there and really making a difference. There is no knife like the surgeon. No fancy shoes and designer dresses. Just her unassuming hospital physiotherapy attire and her precious fingertips and palms. These push deep into the tender points in my armpit, shoulder, bicep and forearm, releasing the muscle and ligaments from the fibrous, scar tissued, tree roots. All of this physio work and at home stretching have improved the situation immensely, lengthening my arm so I can straighten it again. The massage and stretching can break these fibres and provide instant relief. On our first meeting, I wasn’t so lucky, but on the second we heard a snap. Incredibly there was about a 25 percent improvement after one session and another 30 percent on the second and now I almost have full range of movement again. I might have to ease up on the accelerated progress when she assesses me though, if I want a few more visits with Snow White. Might have to ‘pretend regress’ a bit. Thankfully, at present she is still eager to see me again.
Lymphodema is a cruel condition that afflicts women who have had axilla surgery. As if, the experience of breast cancer isn’t enough. It will be a real threat to me for the rest of my life and this will be in both arms as I will be having more lymph nodes removed when the second mastectomy takes place in August. So both armpits will have been tampered with. I have been referred to the Lymphodema Clinic at my local hospital for an education session in the near future.
Today, Snow White is pleased with my progress as I now have enough range of movement to ride my road bike and run. Although swimming freestyle would be a bioemechanically helpful activity to do, she cautioned me against swimming in public pools given the compromised immune system I have throughout chemotherapy. No amount of chlorine is going to protect me from the various lurgies at the indoor pool. I can practice my “air freestyle swim technique’ though, lol. Maybe even some ‘air guitar’ or some ‘air pole dancing’. Lucky it is autumn here with cooling days and with deciduous leaves changing their hue. I love this time of year in my city where many streetscapes resemble Europe because of the historic buildings and tree lined streets. All of this is a prelude to winter and snow in the Australian Alps, which happens to be my favourite all time Australian place both personally and professionally when I used to lecture in a subject called ‘Winter Alpine Environments’. I can’t believe that breast cancer has seen me through two changing seasons of 2013 already.
I am optimistic that with my Dreamy Handed Physio’s help, there will definitely be a 70.3 Half Ironman finish for me in my future. Just not this year as planned. But it will happen. I just hope my useless arm doesn’t make me swim in circles. All of you can hold me accountable to this goal declaration. I am optimistic as the fire for fitness and triathlon has definitely been ignited.
Today, the visit to the surgeon was an intimate affair after hubby was left to find a car park with the kids. I felt a little guilty, as though I was going to meet my mistress. It was a candid exchange. There were polite greetings, warm smiles and then the getting down to the business of inspecting the surgical breast, tissue expander and the progress of my painful and useless arm.
In the room were two late thirty somethings brought together to deal with the issue of breast cancer. One to supply the body and the other the scalpel. Both bottle blonde. Both having spent as much time studying at university in their lives, but one, a highly successful surgeon, the other, not really a highly successful anything. The usual breast care nurse with her human touch was not required for this visit, since I yanked out the drain getting out of bed for our storm crazed whippet.
We talked about how I have been travelling in the seven long days since our last visit. It has been two and half weeks since the surgery that took my boob and lymph nodes and replaced it with a tissue expander that won’t ever get expanded. The surgeon said “You look great, the breast looks excellent! You are healing really well and your arm is lifting high. Of course I didn’t expect anything less given you are young and fit. I’m sure you will push yourself.”
And then the clinker… “I won’t need to see you for another three months!”
I reached down to the grey carpet and picked up my heart off the floor and pushed it back into my chest. I could feel some steamy heat seeping through the gap under the closed consult room door where the Dread Dragon was outside panting. I knew this moment would come. It felt like I had just been dumped after a string of successful dates. I was sure she would want to have many more rendezvous. I am disappointed. I struggled to comprehend. It was all going so well. Today she even said my hair was “pretty” and my boob looked “fantastic”.
In all of this shock and disappointment of not getting to see her for three long torturous months, I confessed. In the confession was an embarrassing explanation of the dreams I had been having of her, my fascination with her clothes, shoes and perfume. I even asked her about her enormous engagement ring.
“That is the most amazing ring I have ever seen!” I clumsily blurted out.
“Oh thanks! Yes I have waited a long time to get it” she replied with an embarrassed tone.
I also mumbled something about my respect for her chosen career in such a traditionally male dominated area. And then, I admitted to taking secret pictures of her shoes, legs and dresses.
All of this was highly inappropriate and impulsive. But I don’t care. I am a stalker. Hopefully by confessing I have avoided any sort of lawsuit relating to privacy breaches. Though there still is the small issue of the stalking.
I won’t be posting images of my fantastic plastic boob. So instead, it’s another image of the surgeon’s divine shoes. Unlike the others, with this one I had permission to take it.
Today I also learnt that going on a crowded ‘standing room only’ Melbourne tram is not the smartest of ideas. Post mastectomy and with my useless arm, the anxiety of elbows, handbags and congested bodies was just too overwhelming.
Oh and in case you were wondering, my new boob is fantastic! I showed my girlfriend today and she also agreed there has been an enormous improvement in the Lisey chest situation.
Why did I chose to start my cancer treatment in a hospital 200 kilometres from my city that has a perfectly good hospital that treats cancer?
My GP with the nervous, wry smile when announcing my diagnosis said… “You would be crazy to do that! Our hospital has great oncology and radiotherapy departments. I know the head of the team. He is a great guy. The surgeons are good. But you would be mad to go to Melbourne! Our city has better survival rates, and if you were my sister I would say you’d be mad to do that!”
There was criticism from others too.
Let me see, my breasts, my body, my mind, my life! There is a lot more to lose when you look at it from my perspective.
We had the roofs of our houses fixed last year and I stupidly accepted the first and only quote. So I have learnt the hard way. Why would I get one quote relating to something so important? This is a very serious matter and I didn’t want to look back in years time and ask the question would the outcome have been any different had I gone to a large specialist cancer hospital in a the big smoke? So I did some research.
In my future, the outcome of this decision may be no different. But I am happy with the decision I have made. I will have all of the surgeries in Melbourne, the treatment plan will be decided on by a large team of professionals and referred back to my local hospital where I will undergo chemotherapy and radiotherapy five minutes drive from home.
But the decision about treatment is a deeply personal and individual one.
In Australia, people have a choice to be covered by their own private health insurance scheme or the publicly funded government system called Medicare. Philosophically and practically, my husband and I have always been opposed to private health. Partly because we have never been able to afford it, living on single incomes as each of us studied or raised our family or paid our HECs debts, or met the expenses of our generation X living. We also, like many, got tangled in the large net of home ownership dreams that has been sold to many Australians. I guess it’s about priorities. But a user pays health system that gives greater healthcare access to people who can afford it just does not sit well with me.
I often wonder what would be my predicament if I lived in the United States and had the same living arrangements, but with the added burden of medical bills showing up in our letter box. Could I claim a redback spider living in the letterbox bit the hand of the postman and so prevented him for delivering such bills? Obviously not. Redbacks do not live in the United States! But seriously, to have to open a letter that says $1500 for the scan, $900 for this, and $450 for the specialist appointment that lasted 28 minutes would be devastating. Or in days gone by, I might have had to mortgage my house to have access to available medicines for breast cancer treatment (as was the case when Herceptin was first introduced in Australia). Heartbreaking stories. I just don’t know how my mental health would fare if this was my reality. It is true, treatment does not come cheap in either country. And if we had chosen private health insurance there would be the actual ongoing costs as well as the gap costs which also add up.
I cannot even begin to fathom what this whole experience might be like living in a developing nation where cancer rates are following similar patterns as here, albeit without the technology, supplies and the standard of medical care we take for granted.
So I am very, very, very fortunate.
Why should access to healthcare ever be about socio-economics? I have never been able to wrap my head around that. Feel free to call me an idealist. Friends have said… “But what happens to you or the kids in this public system if one of you needs a hip or knee replacement? You will have to wait for years in the public system and what if you have cancer?”
Cancer? Cancer is not a problem!
Yesterday, my results from the surgery where completed by the pathology team. They were printed and collated. I’m hoping the breast tissue and all of the nodes cooperated. The results were emailed to all relevant team members. Sometime in their busy day of rushing to patient clinics and ward rounds with takeaway coffee cups they would have taken a look.
Some of the members of my illustrious team work most of their week in the private hospitals nearby and they run through the parks to work at my public hospital. I’m not sure about it, but I think my breast surgeon runs in her stilettos across Fitzroy Gardens. One day I might go and sit there quietly under a tree on a park bench along the main path between the private and public hospital she goes between. I would need to be incognito, but it would help me confirm if she does in fact do this. That might be a bit obsessive and stalkerish? Hmmm, only if people find out about it, I guess.
So, this team, my team, met to review my case yesterday. In the room there were up to fifty health professionals who listened to the presentation and reviewed all the data. They might have debated and they hopefully reached a consensus on the best course of treatment for me. Patient is Lisa. She is 37, almost 38 years old, has two very young gorgeous children and an awesome husband, has a healthy BMI, is physically active, likes running and triathlons and chocolate, bloods results are good, comes to appointments well researched and asks lots of questions, doesn’t let much slip by her. Actually, probably none of this is mentioned, more like… staging scans clear so far, full pathology results are… cancer type, tumour size, grade, margins, hormone status, HER2 status, nodal involvement. The surgeons provide a brief, the plastics team representative says something, the nurse coordinator says something then the oncologists discuss my treatment plan. Discussion. Alternatives? Consensus reached? Great! Next patient…
So when I worried about getting a second opinion in the early days and stressed over my decision to go to the capital city because I really, really wanted a second opinion, I never dreamed I would essentially be given between five and fifty of them. One can never collect too many opinions!
I wanted to be there in this meeting. After all, it is me they are talking about. But the hospital has a policy of not allowing patients to be present. Apparently they trialled patient involvement in these review meetings recently and it didn’t fare so well. The outcome of the trial was that patients don’t like to see professionals debating treatment options. They don’t like to see time wasted on discussion about rounds of golf or a new restaurant that just opened in the CBD. Or flirting between colleagues. Patients don’t like to see uncertainty. They don’t want to know that oncological treatment options could go several ways based on research studies and differing opinions. They don’t want to see personalities and institutional politics or pecking orders at work. What if the bully oncologist wins the argument, not out of merit, but an ability to stomp on the views of others? What if they are tired in this meeting? It is someones life we are talking about isn’t it? My life.
This doesn’t worry me. Like all things, medicine is culturally constructed. It is the best tool we have in dealing with these matters. But I don’t prescribe to the notion that there is the best and most undisputed way. Our understanding of the world is changing all the time. And thank God it does. Cancer treatments evolve and change all the time. And it is through this dialogue between practitioners and their research debate that we know more and more. I am accepting of this whole process.
I would have really appreciated an invite but alas I didn’t receive one. So as would have it, my ears burned a little yesterday.
I imagined the room would have been full of crazy ties, business shirts, perfume and beards, spectacles, after shave and Audi key-rings. Clipboards, pens, iPhones, iPads and perhaps some egos. But most importantly the room would have been filled with (at the very least), a collective 500 years of medical knowledge and experience in both public and private healthcare and there can be no price put on that.
I have enjoyed the nurse at home visits. This week I met five awesome people who assisted me in the home with their bag of hospital latex gloves and Tegaderm dressings to see how I am faring and to measure my drain output. All of them work part time visiting patients in local homes and spend the bulk of their week in the emergency department, or paediatrics or other hospital departments. The home visits help them get out for a while and keep them fresh. One of the Exudrain twins has now been removed and the second will get to go on a car ride back to Melbourne tomorrow for the much anticipated results. Once it is out I will be free!
After a week of struggling with breakthrough pain at night time, I got on top of it yesterday. My awesome GP who isn’t so good at telling his patients about the cancer within them, is very good at writing a script to restock my supply of Endone. It would also appear he is great at checking my post diagnosis triathlon result online. So we are all cool again. It was never going to be an easy task for him, being the deliverer of such bad news.
Life is good.