It’s official – I’m a wimp. I can no longer take the fatigue that “only affects some women – no one knows why”. I’m off work for a bit. I’m feeling somewhat sunburnt and my breast appears, at least to me, to have swollen by a full cup size. Just waiting for the gross and embarrassing fluid leak now – ergh.
The good news is I’m beginning to decipher the lingo. PRP means Primary Reference Point, the first of my five tattoos. (Have I mentioned I’ve been tattooed? They’re a bit ordinary. I was hoping for a bluebird or dolphin, or even the names of my five children, but no, they’re just dots.) The remaining tattoos are SRPs – c’mon you can guess that. Supe means superior and base is the baseline. The numbers are units of measurement – millimetres, I think. They’re all mapping coordinates which is kind of fitting given my status as a tourist in Cancerville.
BUT, I gotta tell you, this exclusive language is nothing compared to the language used by women who write on radiotherapy forums. Way-hey, now there’s some cool lingo. I did some research early on to see if anyone had deciphered the language but no, they’ve created their own instead. We’ve got RADS, DX (which I thought was a mail delivery service), SNs, and other stuff. Jim Stynes would be proud of these women. They are residents in the region of Cancer, not trippers like me, making it their business to understand everything about their disease. They’ve subsumed the medical language and reinvented it – a resistant discourse, if you will. Check this excerpt from someone who was discussing her diagnosis and treatment, “…MX, 8 x FEC, 15 rads grade 3, 2cm with 4/12 node involvement”.
Lordy, where’s my Lonely Planet phrase book!
I’ve been tardy in my posting. I was waiting for the radiotherapy to start so that I’d have some stuff to talk about but in the waiting I’ve gotten out of the habit of sending postcards from the cancer trip. I’ll try to be better.
I’ve been pondering cancer in general and my experiences in particular and do have a bit to talk about. I thought I’d begin with the sometimes disempowering experience of being a cancer patient. I read some stuff in the paper today about Jim Stynes and his thoughts on putting yourself in the know, but getting your head around much of what goes on in hospitals and clinics is really uncharted territory for unseasoned travelers.
Much has been written by post-modern philosophers about hegemony, the power of language and the exclusivity of discourse. The theory goes that particular knowledges (eg., medicine) create specialised language or exclusive jargon that, in essence, provides a level of power to the owners of that language while disempowering those who are not in on it. To me this is writ large in the radiotherapy clinic. I don’t necessarily believe that the speakers of this language employ it in order to maintain their exclusivity, sending themselves on some kind of power trip… or ‘journey’. I think they’re too kind for that, but the effect is that you really don’t know what they’re talking about even though they’re talking about you.
“How’s the PRP on that?”
“Hmm, 92.5ish supe to base”.
The use of exclusive language coupled with the fact that you’re lying semi-naked on a bench surrounded by gigantic machinery that you know will burn you makes for a kinda disempowering experience. Oh, and while in this state you’re also being watched on camera. I go stupid and say “thank you” when they tell me they’re just going to bend my arm, or move my hips, or leave the room. It’s because they’re actually speaking to me in English… and powerless person that I am, I’m grateful.
Not that I’m not grateful. I am. I’m grateful that I have a superior GP, I’m grateful that the surgeons and oncologists and radiologists all have highly specialised talents and knowledge, I’m grateful for the humanity of nurses, I’m grateful for the love and support of my husband and family and friends, I’m grateful that I’m not going to die of cancer. I just wish I understood what the fuck they’re talking about.
Perhaps I’ll work it out eventually.
This post is off topic. I just have to say that last week I was thinking of going to Queensland for a holiday but that state and its stupid electorates can go and get rooted. I’m going to Tassie instead.
It is my happy, happy pleasure to advise that you may put away your knitting needles, knitting nancies, crochet hooks and other crafty implements. I will not be requiring a beanie. I received the good news last week (forgive my tardy announcement) that both the sentinel node and tissue margins surrounding the tumour were clear. There were some changing cells in the margins but they, along with their cancerous parent were dispatched to a petrie dish and given to Mr P Mac for analysis and eventual disposal.
The cancer was found to be of a type that is particularly fond of munching on girly hormones. As I am not predisposed to having my ovaries removed and being plunged into a menopausal state (despite my proximity to its eventuality) my hormones must now venture forth incognito. Through the aid of a medication called Tamoxifen they will be disguised as something that cancer cells cannot recognise (nya, nya, nya). Because they’re my hormones and they’re probably just as immature as I am, I can see them doing sneaky little two finger salutes as those visa-less cancer cells pass them by. Oh, I think I’m visualising!
Aside from disguise and visualisation, the other treatment I will be having is radiotherapy. I haven’t seen the radiologist yet so I’m not sure exactly when this will begin and how long it will last. I know that I will have to front up to the Repat five times a week and it’s been suggested that it will be for around six to eight weeks. I’ll find out more about it in a few days. Given that the cancer was completely removed and the medication will starve any stray cancer cells, chemo is not something I will have to suffer. I am a very lucky person.
My sentinel node, bless its little heart, was sacrificed unnecessarily. Brave little soldier – its days of guarding the rest of its armpit buddies are over. I read its epitaph in the Peter Mac report with a touch of melancholy but I am so pleased I don’t have to go back for more surgery to have the rest of the battalion removed. Having just one taken out has resulted in a very strange numbness in my underarm and back. It now feels like your face feels after you’ve been to the dentist and had a filling. I’m told this is normal but it feels pretty weird to me.
Have a look at this:
Indiscriminate randomness had nothing to do with me getting cancer. I now realise I was bound to get it!
When waking up in the recovery ward one should always double-check what scale the nurse is using when she asks, “On a scale of one to ten, how would you rate your pain?” Failing to do so might result in being given an unneccesarily large dose of a legal opiate. Some might think that believing eight is really two is as silly as thinking no means yes. I would hope, however, that people would feel inclined to be kind and realise that an absence of clear thinking is something that might be excused post surgery.
It’s also a good idea not to think one might be able to eat char sui pork and steamed rice after having an anaesthetic and massive dose of morphine. In fact it’s probably wise to let go of the idea that any food placed in the mouth will taste and feel like anything other than yesterday’s Herald Sun.
I will spare you my advice and musings on eliminatory processes post surgery…
I’m two days post surgery and I feel pretty crappy. Not in pain, just weird in the head. Liam tells me my texts have been full of foolish spelling errors.
Anyway, everything went well. They look out the lumps and one sentinel node and the node looked good. (Don now acts in its stead. He answers the phone and door and decides who may enter). They gave me lots of morphine after the operation and I have to say I think I would have preferred the pain. I sat up in bed afterwards nodding off in front of the telly like an old junkie. I’m home now trying to do normal things but I keep crashing.
I have a blue breast, not from bruising (although there is some off that) but from the dye that was injected into me for the lymphoscintogram. I mean it’s really blue – ultramarine. I’d like to take a photo of it and post it but it might freak a few people out – probably me the most when my brain starts functioning properly again.
I’m rambling a bit. What I wanted to comment on the most in this post is the public health system… and the people who work in it. When I went in for my pre-op screening appointment at the Austin Hospital I had a shocker of a headache – I’d had it for two days. The first thing I had to do when I got there was to have an electro-cardiograph (or whatever that thing is called). I was lying on the bed with sticky things all over my chest when the technician pointed at my bracelet and said, “You like that sort of thing, do you?”.
“Sorry?”, I said.
“Oh, yeah, it’s mostly fake. The bracelet is real but all the glass beads are fake Chinese ones”.
“People spend a lot of money on them, but not you. It’s not very elegant”
I went back to the waiting room in a kind of daze pondering the conversation and wondering how I let someone so rude put sticky electrodes on my bare chest. The waiting room is shared by the chemo clinic which is distinguished from the pre-op clinic by a brightly coloured desk and pop-paintings that are supposed to brighten your mood even though you feel like crap. When I decided I could no longer look at the bravely smiling, turbaned women being greeted by the nurse who took them off for their dose of chemo, I pointed my face to the ceiling. I counted the number of ceiling tiles that were stained and needed replacing. When I’d finished that I studied the tired lino floor. Pretty soon I began to feel that this hospital, despite attempts at cosmetic patching was an old and sad place. Then I heard my name being called.
The doctor, Nelfio, asked if I’d mind if a couple of medical students sat in on the examination. By now I’d had a headache for two days, encountered an odd woman who insulted my bracelet and witnessed women going in for chemo in a tired, sad and old hospital clinic. I was in no mood for clumsy med students… I was grumpy. I answered snippily, “I guess it depends what you have in store for me. Do I have to take my clothes off?” Nelfio was apologetic and said if I didn’t want them to be there, they would respect my wishes – it was entirely up to me. Instead, using my best martyr sigh I very wearily said, “No, it’s okay”.
There is no doubt I was rude at the beginning of the exam. I didn’t expand my answers to any of the questions asked about my health history, saying either yes or no and avoiding eye contact. But they kept speaking respectfully and kindly and eventually I softened up and decided they were nice people. Then I met a nurse, Kate, who was funny and we cracked a few jokes and then as I was leaving I heard someone call my name. I turned around and saw Irene, the breast nurse I’d met the day I was diagnosed. She came rushing over saying how pleased she was to see me and that she knew I had an appointment there that day and had come over to the clinic to say hello. We sat down together in the waiting room and she gave me lots of useful advice and was really lovely.
Despite my apprehension about undergoing surgery at the tired hospital for old soldiers, my experience at the Repat was similar to that at The Austin (except for the rude technician who by now I took to be the exception that proves the rule). All the staff were very attentive, explained everything and were careful to check whether I had any questions. Even though it’s a sad-looking building, there’s a gentleness there that made me feel like I was in sure and safe hands – it’s sort of like the kind old grandparent of hospitals. Our public health system might keep you waiting in the waiting room longer than you’d like and it might be as inelegant as a fake Pandora bracelet but it works well and it’s brim full of the kindness of strangers.
I like my surgeon. I got the feeling her sincerity about ‘my’ cancer was something practiced… a bit of necessary niceness that the breast nurses coached her in before getting down to tin tacks. Here is an example of the kinds of things she says:
When she told me I’d have to take an anti-hormone medication for five years I asked, “Will that send me into an early menopause?” She replied, deadpan, “You’re five minutes off turning 49”. Another time, I asked her if I should be feeling really tired (because I have been) and she replied blandly, “You’ve got cancer”. I imagined a thought bubble extending the statement with “You idiot”.
I don’t mean she’s not nice, but she’s the kind who would never have come up with the word ‘journey’. She’s more likely to say ‘treatment plan’. Speaking of which here it is:
Treatment Plan 1 (hit the link to see the document she constructed during our first consultation)
For those of you who find it difficult to read maps, I’ll translate into a six point plan (or itinerary):
- I’ll have two procedures on the same day. One is a lumpectomy and one is a lymphocintogram (yes, I did consider typing lymphojacintagram)
- The lymphocintogram entails the injection of blue dye into my breast which will make its way to the lymph nodes under my arm
- After a few hours I’ll go into surgery and have the lump (actually there are two, but one is so inconsequential it’s hardly worth mentioning) removed along with a margin of surrounding tissue
- At the same time two sentinel lymph nodes will be removed and examined. If there is any activity, i.e., if there are signs of the cancer having travelled there as part of its own merry ‘journey’ around my body, the surgeon will conduct an axillary clearance. This means she’ll take out the remaining lymph nodes from under my arm. (We would prefer this not to happen).
- If the cancer has been slow out of the blocks, having spent too much time languishing in my breast tissue and not enough time hitting the road, I’ll be stitched up, sent back to the post op ward and given a stale sandwich to eat.
- After a week there will be a final analysis of the surrounding tissue margin and lymph nodes. If there is any activity in the margins, the surgeon will remove more breast tissue and if there is any activity in the lymph nodes, she’ll take take them all out. The odds are these: in one in ten cases there is activity in the margins and in 30 per cent of cases they go back and take out the rest of the nodes.
The result of the surgery will determine the rest of the treatment. No activity in the margins or lymph nodes means it’s likely there will be no chemo, just radiotherapy. If I have to have chemo, I want it known now that I will not be wearing a turban and I’m not sure about scarves. Lee has a blonde bob wig that she might consider lending me and I’m also tossing up the idea of sporting a well polished dome in public… if my guts, probably heaving towards a ceramic bowl, haven’t left me completely.
This is a blog about breast cancer – my cancer the surgeon called it as she looked at me earnestly, her hands folded prayer like and her head leaning slightly to the left (I had to try very hard to contain the smirk that was pushing its way onto my mouth. I was sure her next words would be, ‘make it your friend’… As if I wanted anything to do with it!)
Anyway, I thought a blog might be a good way to keep those who are interested up to date with my latest trip along the cancer road as well as provide me with some diversional therapy. I’m going to apologise in advance for any irreverent musings that may take place during these posts. If you think you might be offended by nonsense and off-colour jokes then stop now, go no further because I intend to inject into this experience as much cheek and humour as I possibly can. Surely, it will come as no surprise when I confess to being a little bit scornful of authority. Some might call cancer the ultimate bossy boots so I intend to knock the wind out of its sails by laughing at it a lot. Here I imbue cancer with a personality – of course, it has none. Humour is merely a mechanism I employ when I’m shit scared. (Did I mention I’d be swearing?)
I’ve called this blog, The cancer trip, because everyone calls it a journey and it’s such a hackneyed phrase… and ickily new age. I’ve decided that, if we’re using travel metaphors, the word trip is more befitting my personality. Whoa, what a trip! The word journey implies there are serious lessons about the self to be learned. I think we can also assume dark matter such as cancer could provide good fodder for humour.
My cancer trip. I think it’ll be bad, I think it’ll be good. There will be hilarity, there will be yelling and some of the time I may even be on the road.
I would like to pay tribute to a person who really is on the road and has been blogging about her cancer at Finding Chemo (http://findingchemo.wordpress.com/). I’d also like to give her credit for her humour and for posting this great number from Joe Jackson.