Today I had the pleasure of a 2 hour radiotherapy planning session which included discussion and a permanent markup of my chest for when radiotherapy commences. Read this peeps, I will endure 5 weeks of daily visits to the hospital. That is 25 lovely barbecues to attend where the star protein is me! No potato salad! No beer and no tomato sauce! Big sigh.
Next I move onto sharing the excellent news that the vacant lot opposite my hospital (where parking for 300 odd cars including mine was always a guarantee), now has a massive blue fence around it with locked gates! Seems it’s time to build some long overdue, new, multi million dollar hospital or something. This means I will need to park half a kilometre away every day and will add another 30 minutes onto each treatment time. Obviously it’s not all about me though, the Sunom Bonum rule and all that… greater good for the community, new hospital yes! I’m just whinging about the timing. The chance of me getting a spot in the existing hospital carpark that has space for 25 cars is a bit limited. But you never know. Crazier things have happened. Wish I lived close enough to walk!
My decision to have radiotherapy has not been an easy one. I am in a group where the research is a little light on to clarify if the survival gains of radiotherapy outweigh the risks of a younger person having it. Remember the Supremo Trial I mentioned months back which was going to measure the effectiveness of the selective use of post operative radiotherapy after mastectomy for women with between 1-3 nodes positive? And I laughed at it in this blog because it sounded like it was named after a pizza? Well I chose not to be involved with that International study as I didn’t want to be randomised into getting radiotherapy or being in the control group with no radiotherapy. I wanted the decision to be solely mine. In years to come I want to own my treatment decisions and say at least I chose to take every treatment available to keep the breast cancer at bay.
Of course, I actually have a higher chance of a metastasis somewhere else in my body than a local reoccurrence or a new breast cancer starting now that I have had both breasts removed. But radiotherapy aims to (in layman’s terms) “sterilise” a large section of the left side of my chest and up to the lymph nodes near my clavicle. These daily doses of Xrays to my chest will take just around 4 minutes to be delivered and will essentially cook me from the inside out. How lovely! But given I was under 40 with young children, with a grade 3 aggressive cancer in 1 node, there is the potential that cancer moved past that one node and up to those nodes higher than my chest. Chemotherapy has supposedly mopped up the rogue cancer cells in the vascular system, radiotherapy is supposed to take care of the chest wall, the skin and those higher lymph nodes. So this was a no brainer for me after seeking several opinions.
My radiotherapist ever so eloquently explained the risks to me and I am handed a consent form which outlines all of the risks and side effects. Side effects may include feeling tired which is most noticeable in the second half of the treatment course and the tiredness can take months to resolve. I may become red, I may peel, I may weep, I may require special dressings for a short time. Shit I hope my tissue expander doesn’t fall out! I may develop a tan for some months. I may experience some chest wall discomfort. I may develop a sore throat on swallowing. In time I might develop tiny dilated blood vessels in my skin which is permanent. Truth is I’ve got a tonne of those buggers already!
More worrying side effects include the very rare possibility of developing inflammation of the lung that lies in the path of the radiotherapy under the ribs. The yellow consent form cheerfully points out that only 1 in 100 women having radiotherapy for breast cancer will develop shortness of breath and/or cough as a result of such inflammation, and some may be left with scarring of the lung under their ribs. Fingers crossed that isn’t me! I may develop weakened ribs which may lead to rib fracture. Please no! And… there is a very rare risk of permanent damage to the nerves that go into the arm, pain and or weakness from radiotherapy. I may also be at a even greater risk of lymphodema in my arm that has lost all the lymph nodes. Oh for heavens sake! Enough already!
But wait, there is more…
There may be detrimental effects on my heart because the left chest wall is being treated. There can be temporary inflammation of he sac that covers the heart and possibly a very small risk of a heart attack years later. The radiotherapist explains that the heart sits a little more forward in the chest cavity of younger people and this makes it difficult for the radiotherapy beams to miss it in breast cancers of the left breast. Shielding the heart is very difficult but todays’ planning and scanning session will show the radiotherapist how much of my heart will be exposed. There is also the delightful small risk of developing a second cancer at some time in the future as a result of receiving radiotherapy. Yay! Of course, none of these things may happen. Yeah right!
After all of this information, which I have had explained to me in several meetings and in the consent form, all I can hear in my brain is Freddie Mercury singing…
All we hear is Radio ga ga
Radio blah blah
Radio what’s new?
Radio, someone still loves you!
And I guess that someone is me because I signed the consent form and it’s all systems go! My reasoning is that cancer kind of trumps all of these potential risks and many of them are very, very, rare. Who am I kidding, it’s not like I’m not already high risk for heart disease anyway given my family history and penchant for Lindt chocolate. Though the radiotherapist points out that if I can stay active and stay in the healthy BMI range and NEVER EVER smoke I improve my chances. The radiotherapist also plays down the ramifications of heart disease as though any heart surgery is just a simple walk in the park and stents can do marvellous things these days. Obviously the radiotherapist hates cancer as well and rightly so. They must see some awful things in this line of work.
I say goodbye to my radiotherapist and return to the waiting room.
After several minutes of staring over the unfinished 1970’s jigsaw puzzle on a table in the middle of the room and avoiding the day time television or the instant coffee on offer or the pity head tilts that are firing at me from the room full of people over 70, I conclude that radiotherapy is largely experienced by people older than me. If it wasn’t, there would be free wi-fi on offer or there might be iPad’s for use. I feel like I have stepped into the recreational room of a retirement home.
After a short wait Mr Cool and I are met by a young technician who appears a touch nervous and a bit too enthusiastic at our first meeting. After polite introductions we walk through 2 doors and down a long corridor to a CT Machine. While walking I am briefed on the procedure in a way the US President is always briefed when being brought to the drama of saving the world in some Hollywood film. I walk this hall with steely eyes and just nod when the technician describes the scan and what to expect. I don’t even bother making eye contact now. Eight months into treatment and I am now either disconnected, professional at matters related to cancer, or simply broken. Perhaps a little of all three.
We enter the room and meet another young technician. They work in pairs to measure and cross check each other. I am given a blue gown to dress in which seems pointless as it is removed as soon as I lay on the scan bed and I am left bare-chested from then on. There is no time for modesty here.
My arms are stretched over my head and I hold two bars which is an excellent achievement after 2 breasts have been taken and replaced with rock hard tissue expanders as well as the removal of so many lymph nodes. The most recent surgical side from just 3 weeks prior is slow and tender as it is lifted towards the handles. I will need to stay still in this position for some time.
I am surprised in this day and age there is not a machine that can just scan me and calculate all of the relevant positions. I’ve seen this machine a dozen times in movies. But today, it all comes down to the judgements of two technicians with their eyes and marker pens and cold metallic rulers.
My head is fixed into position to the table with a wedge placed under my neck. I can only see their faces when they enter my very narrow field of view. With such limited field of vision I start relying on the other senses of smelling and hearing. I spend over an hour on the scan bed wondering and hypothesising whose breath might be the one that was so offending to me. Note to self… Anytime working closely with other humans, or professions where standing over or on top of other humans, check the status of breath, PLEASE!
This thought process is only broken by looking up at the rectangular tile inserts of the floating ceiling, I briefly imagine myself in an office. I am annoyed that some of the inserted rectangles sit crooked. These people work all day under a crooked ceiling. I hope they can mark me up accurately.
Freddie just keeps singing in my head as the minutes pass…
All we hear is Radio ka ka
Radio goo goo
Radio ga ga
One of the reasons the appointment takes so long was I had to have a special boob cast made which will sit on my chest every day. Because I have a tissue expander, it makes radiotherapy a touch more complicated. The bulk of women have reconstructive surgery at least six months to a year after radiotherapy with more complicated surgeries that take tissue from other parts of their body to recreate the breast. Radiotherapy can cause a lot of complications to implants, namely capsular contraction where scar tissue forms and presses on the implant which reduces the cosmetic outcome and can cause pain. Originally I was not having radiotherapy and an immediate reconstruction with an expander was decided on. We are making the best of the situation.
The breast casts role is to absorb the low dosage of the radiation and lift the high dose into the layer of the skin. Without it the expander will absorb the radiation dose so it acts as a reflector of sorts to ensure that any cancer cells left in the skin are sterilised. I’m so taken with this boob cast that I asked if I could keep it. The technician said “I don’t see why not, it’s not like it will fit anyone else.” My mind begins to wander towards all of the things I could use this breast cast for. I also asked the plastic surgeon if anyone had ever asked to keep their expanders. He laughed and said “There is a first for everything!” But I might have trouble getting theatre staff to release them next year in my exchange surgery when I move to silicone implants as surgical staff are a bit funny about releasing something that has had blood on it.
I’m intrigued by the way all of the technicians frequently mention the coldness of the alcohol swabs that will wipe away the marker pen from mistakes they make in marking my torso, or the warmth and wetness of the boob cast, but fail to tell me anything about how cold the metal ruler they keep pressing against my skin is. I swear I saw a tech get it out of the freezer at the beginning.
The whirring sound of the scanning machine begins as it rotates and spins. It’s a bit like standing closely to the station platform and watching the tube trains whiz on by my face. My mind then wanders again. It would be awesome if these scan machines played the music from the film “Close Encounters of the Third Kind”. You know the five tones the alien mothership and NASA use to communicate? Now that would be super!
Mid scan, a technician comes over and moves one of my marks. The radiotherapist is reviewing the scans from the radiation free zone of the adjacent room and is not happy with the alignments. I’m sure they turned off the radiation then, but I just wanted to scream at the top of my lungs… “Run, get away while you can!” This stupidity is motivated by those yellow radiation warning signs that are everywhere. Perhaps this would be touch inappropriate? I have learnt that my humour is rarely appreciated in these situations.
Finally, I receive 6 black tattoo dots across my chest. This thrills me no end given these tattoo dots happen to look like melanomas so I will have a permanent reminder of my breast cancer and treatment and skin cancer every time I undress. These will serve as a reference point for the laser beams every time I arrive for radiotherapy. Precision is everything or the treatment will be ineffective. I am cautioned about not losing any weight while radiotherapy takes place as this will move the dots and this planning session will have to take place all over again.
It turns out I have been white knuckling these handles for an hour and a half. I am asked several times if I am comfortable, but to be honest removing the hands would cause more pain for me than leaving them there. It is a long process being measured, marked, tattooed and scanned and I mustn’t forget the time that has gone into my snazzy new breast cast either.
When they finally lift me up, it is painful. My arms and chest feel like they are set in concrete and I have trouble bringing my arms back to my side.
The ongoing nerve pain I am having with my most recent surgical side has made me seek some early intervention treatment with dreamy hands again. Remember my physio? She broke down all of my scar tissue and lymph node remnants and completely fixed my cording issue giving me full range of motion again. Hopefully she can help with healing and moving forward again this time.
So there is just the small matter of this radiotherapy to endure. Unfortunately there is no fixed start time yet, as there are more people awaiting radiotherapy than time slots available. But I am told it should be within 2 weeks and if all goes to plan I should be done with active treatment around late October, 10 months since I started this crazy journey. Oh happy days!