In late September, a dapper knight in shining armour (aka radiotherapy oncologist), galloped through the forest and across the fields and offered this damsel in psychological distress an immediate start to radiotherapy at a hospital in the big smoke. This act of kindness and generosity helped put my mental health back on track. After nearly ten months of active treatment for breast cancer the desire to get to the finish line had intensified and anxiety levels were climbing. News of delays to radiotherapy treatment were painful for all concerned; the patient, friends, family, medical professionals.
So, eleven weeks out from chemo and six weeks from a prophylactic surgery, I finally started radio and I am very pleased to write that my active phase of my breast cancer treatment is finally complete. I recently read an article in the New York Times which depicts what it is like to have breast cancer in a developing nation such as in Uganda. Of particular interest is the graphic a third of the way into the article which reveals the rates of breast cancer and death rates to the disease worldwide. There is also a video that documents Jesse’s story. I think anyone undergoing treatment should click the link above and read this article. This has put the high quality of the treatment I had been fortunate to receive since January into perspective.
Radiotherapy very gratefully commenced and every weekday for five weeks I arrived and was greeted by friendly staff. The small waiting room only ever had a few patients waiting, the wait was never longer than a few minutes. All facets of this radiotherapy process ran as a well oiled machine. I would arrive and change into a dressing gown kept in my own locker and make my way to the treatment room with some trepidation, where I would commence each speed dating session with Varian. I was thankful for this treatment opportunity, the genius physicists and engineers that created such a machine and the doctor geniuses that write and execute treatment plans for patients.
Varian was a tall, grey, imposing linear accelerator. The first time I laid eyes on him I was a little overwhelmed. The prospect of dancing with a linear accelerator is like having twenty five dates with someone you have no interest in dating. The daunting long road of treatment weeks ahead is overwhelming but in retrospect, it does move quickly.
For twenty five treatments I laid bare chested on my back with my arms gripped to handles above my head. The friendly and efficient human technicians would move my torso and hips into position to align my chest tattoos with the laser. Precision is everything in these circles. They would then leave the room so it was just Varian and I alone. Varian would spring to life and sometimes do a sweep over my body, with his arms outstretched he would complete a cone scan and send a fast and accurate visualisation of my bony anatomical structures in 3D to the techs computer screens outside. Then the techs would re enter the room and carefully place a bolus sheet over my chest. It was laid over my tissue expander to absorb the low dose of radiation and lift the high dose to the skin. Tissue expanders are complicating little things.
The humans would again leave the room and then it was just me and Varian, alone in each other’s company. Date, after date, after date. The one sided conversation between us was always the same. Eeeeerrrrrrrrrrrrrrrrr, click, click, click, then the industrial sound of thousands of volts of radiation being projected at my chest. Not at a specific tumour as that was removed long ago, but at an area where cancer cells could localise, such as the skin, the incision site and the chest wall near where my tumour was, as well as the lymph nodes up higher near my clavicle, these beams of radiation being of a preventative nature.
Varian was always in command while I tried to breathe normally and laid perfectly still for 10 minutes. Sometimes my mind ran free and I imagined my body floating in the ocean with a dolphin swimming and circling around me because Varian’s exterior was grey and shiny this conjured up the image of a sea creature. Then at other times, it felt like I was laying on production line in an automative factory. There was something about the way his long robotic scanning parts moved into position, I felt like a part being welded. If it was early in the morning, Varian had been sleeping and the technicians would wake him up by turning him on and he would lift his gigantic head from the floor. This was the only human quality he displayed.
Varian’s gigantic cyclops head would always rotate clockwise around me, stopping at nine different angles and injecting fifteen different doses of radiation into my chest and clavicle area. But his monotonous dialogue was always the same. While I laid still and as quiet as a mouse, Varian strutted and spun and spoke…
“Errrrrrrrrrrrrrrrr, pause click click, Neeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Errrrrrrrrrrrrrrr, click, click, pause, Neeeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Sometimes each of the “Neeeeeeeeeeeeeeeeeeeeeeeee” radiation firing sounds would go for five seconds and sometimes ten. Not that I was counting or anything. The monotony of the sounds made it difficult to count them, so by the end of the fourth week I gave up in my quest to count, and instead focused on recognising the nine different angles he stared at me from.
Varian’s enormous cyclops eye would blink at me with each beam projection. His columnar lead lashes moved with each pre programmed position to create a shape that the radiation is projected through. Interestingly, the final shape Varian would make, was a fairly accurate silhouette of the right side of my left tissue expander. Once I saw that shape, I knew that Varian had had his way with me. Then I would get up, get dressed and leave feeling ever so slightly violated.
At the very end of my five weeks of treatment, my skin began to redden and break down. The line of skin in the fold of my armpit began to split and peel, my nipple lost its top players of skin, but the rest of my breast (or tissue expander, I’m not sure how to to refer to them anymore) remained intact.
Before this breakdown of skin occurred, I had been religiously moisturising multiple times a day with a product called Moo Goo Light Udder Cream (see www.moogoo.com.au) A generous friend who also just finished her treatment for breast cancer mailed me some and this had been great for keeping the skin moisturised and taking the heat away. It definitely helped my skin. Different products work for different people. Some friends swear by using a leaf straight from an aloe Vera plant, though some practitioners caution against this because of the risk of infection. I also used cold compresses of flannels from the freezer, and have been bathing in saline solution (boiling water and adding 1 teaspoon to 1 litre of cooled water).
At the moment, the small areas of broken skin or open burns I have developed will require regular dressings each day. The radiation dose will continue to climb for another ten days beyond treatment and then my body should start to heal quite quickly thereafter. It is itchy and painful at times. When the burns begin to speak to me, it’s time for more Solugel. Showering also provides some relief and assists in the removal of any dressings that become stuck. The aim is to preserve the skin. I can’t help but think what it would all feel like if I hadn’t had the majority of my nerves severed from the mastectomy and axilla lymph clearance. There is a plus after all to mastectomy induced nerve damage!
Fortunately, I didn’t experience any fatigue that patients sometimes report with radiotherapy. I did however develop a sore throat in the early weeks which made swallowing some foods difficult. But despite that, there were no other effects.
My children really enjoyed their time with me in the big smoke. Despite having radiotherapy everyday for five weeks I was able to turn it into something positive for them. Life continued as normal and we were able to have some fun family experiences visiting landmarks and tourist attractions in the city. Last week, they created some pictures on our iPad to document some of the things they’ve been doing with me.
Somehow and rather hilariously, they imported a picture of a linear accelerator from my iPhoto library into a Play School Art Application and I found these pictures on the iPad. I had to laugh that Big Ted was chosen to have radiotherapy treatment.
This morning, my eldest said “Mum I wish you never got breast cancer, but I’m so excited that you’ve finished your treatment!”
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.
A faux pas is a socially awkward or tactless act, especially one that violates accepted social norms, standard customs, or the rules of etiquette.
For example, at a crowded school fair, it’s not appropriate to verbalise in front of adults or children that the fundraising cupcakes look like a breast.
Oh dear! It might just be time for a holiday to Titz, Germany, or Mammari, Cyprus or Booby’s Bay, England. Errrr, perhaps just a visit to my psychologist to sit in the
boob I mean blue, BLUE chair would suffice.
And don’t even say anything about the position of the smartie!