I had a call last Friday advising me that the planning session for my radiotherapy at Wellington Hospital would be on Monday 14th at 11am. That was followed up on Saturday with a leaflet advising that the session would be 1-1.5 hours long.
I thought that I could manage this on my own and from what the oncologist had described it didn’t seem like a session where Peter could have provided much support or have been involved in much decision making. And, given that it was the first day back at work after the Christmas holidays, we decided that he would go to work and I would do this one on my own. So yesterday Peter and I drove down to Wellington. First stop was the office in Karori and then I took the car to fill in a couple of hours between then and the 11am appointment. The first stop was my favourite clothing store in town where I bought some more shorts, befitting the weather here in the Wairarapa rather than what it was in Wellington yesterday.
I had been given quite precise instructions for parking my car, by the woman who had telephoned me about the appointment, either the underground car park under the hospital. I hadn’t even known there was one but it incurred a fee, so I decided on the other option which was to park in the Cancer Society car park across the road from the hospital with no charge, having first registered with the main Cancer Society Office alongside the car park. Being a little unfamiliar with the layout in a particularly busy part of town I drove by first and having also discerned, at that point, that all the parking anywhere near the nicest cafes was already taken I settled on going to the McCafe further up the road for a coffee while I waited for the time to pass before my appointment. Later, fortified by the coffee and a Facebook chat with Val, a friend already undergoing radiotherapy treatment for breast cancer in Christchurch, I moved back down the road into the Cancer Society car park, registered and then waited an age, in the rain, for the pedestrian crossing lights to allow me to cross the road. I’m sure it kept me waiting deliberately to make me flustered because the time was ticking away and, of course, I was getting wetter and wetter. I arrived with about 1 minute to spare and, inevitably, on a first visit, had to fill out a couple of forms.
They were so prompt that I hadn’t even filled the first form before I was called away, and given the lowdown on what was to happen during that appointment. Val’s last message to me before I left McCafe was “Kia kaha, wahine toa”. I was familiar with the first three words but not the last one. Sorry Val but I had to Google it to find out what it meant. For those who are not familiar with the Maori language the expression means “stay strong, warrior (or strong) woman”.
Well as young Dana very carefully went through what was going to happen at the planning session, step by step, I became less and less strong. In fact I went into complete meltdown. By now, of course, I am in the public hospital system and removed from the slightly more cloistered existence at the privately run Boulcott Clinic and Hospital. One of Dana’s first questions was did I mind having student radiographers present? Mind? Sorry, this is the woman who hated having to undress and stand in an examination room in front of a strange male doctor with my breasts exposed. Throughout this whole process, that first visit to the specialist, the subsequent biopsies, the surgery, the oncologist appointment, and now this planning visit, the rights of the patient which I had read on many occasions as a patient in Bowen Hospital (another privately run facility in Wellington) kept coming back to me. More particularly is how they are completely violated by this diagnosis, disease and now the treatment. In fact, now that I look back for the right wording I find that these rights are enshrined in a document put out by the Health and Disability Commissioner. The first three (of ten) are:
You should always be treated with respect, including respect for your culture, values, beliefs and personal privacy.
No-one should discriminate against you or push you into doing something or making a decision that you are not comfortable with.
Your care and treatment let you live a dignified, independent life.
For me the key words that kept running though my mind were “personal privacy” and “dignified life”. There are already so many different people who have gawked at my breasts in a professional capacity over the past few weeks and here I was about to expose myself to quite a few more so that they could size me up for the appropriate treatment, that the thought of having student radiographers present as well was just the dizzy limit. I knew it was my right to refuse and I did, but just the question completely undid me. Here it was again, more and more people stripping away every ounce of personal privacy and dignity that I had ever cherished.
Now, any young Mum will know, how precious those two things are, as children constantly burst in on anything and there is nothing you could do about it. As mine grew up I decided that, however silly it might seem now, the last bastion of my privacy was my handbag. My whole life used to be contained in my handbag and having its contents raided or strewn around the house was a sure fire path to extreme ire on my part. Fortunately, over time, they grew to respect that tiny bit of privacy that I clung to.
Here, there is absolutely nothing left that I can cling to. Privacy, dignity just don’t exist in this ghastly process. The further Dana went with her very careful and detailed explanation of what was going to happen yesterday, the further I disintegrated. I was supposed to have my mug shot taken so that they knew they had the right person under the machine once treatment begins. I refused that offer three times because I was such a red-faced, red-eyed, teary mess. When I eventually left they still hadn’t taken it.
Finally the explanations were over and I was allowed to disrobe into one of these hospital gowns that they can undo at the shoulder and completely expose your breast/s and then was positioned under the machine. Finally came the last straw, three tattooed dots on my chest. For me the ultimate indignity – who can tell. I have suffered so much loss of personal dignity I feel my essence has been ripped away from me. I now no longer know which indignity they impose is worse. Every one is just one more humiliation heaped on another.
The young oncologist who seems to have something akin to cerebral palsy, dismissed these three dots as inconsequential. I would hardly notice them, he said. Now that I have them I know that, but I also know that they are there, that I did not want them to be there and that I don’t want them to be there for the rest of my life. It doesn’t help that I can see one as soon as I look down my chest. Its fine for a male to dismiss them as inconsequential. For me they are a further invasion of privacy, one more humiliation. Of course, for him, they are inconsequential. He’s not stuck with them for the rest of his life. I am already stuck with a disfigurement my husband thinks is a mutilation, and all they want to do is stick tattoos on it, well around it. Not my idea of living a dignified life.
Then there was the CT scan to do. Another observation which I have noted whenever one has an Xray and now even more during this process is how all the staff retreat to another room while you are passed through a machine that is passing damaging rays thought your body, and later on for 6 weeks I have to have this intense radiation treatment with my breast exposed at close quarters to a machine that they leave the room to escape!
I can, apparently, have the tattoos removed for free, after the treatment by the Caci Clinic in Thorndon Quay, in Wellington. But, guess what, it takes another three to four treatments and how many more people do I have to expose my breasts to.
After it was all over, Dana had determined that I needed to speak with someone else, strangely enough not a social worker type person but another radiographer, one who will apparently be involved in my treatment. I was introduced to so many young women yesterday (I’ve refused the ministrations of any further males) and apart from Dana I have forgotten every name. Her name may have been Jenny so I will her call that until we meet again and I find out how badly the effects of yesterday’s visit have obliterated the more mundane things in life like peoples names.
Jenny wanted me to explain what was wrong. What a stupid question. What’s wrong is that I have cancer and everything about the supposed treatment which hopefully gives me better odds of surviving longer than 10 more years is stripping away the person I have strived to become over the last 63 years and leaving me with nothing that I recognise any more. What will be left of me to survive that 10 or more years. Certainly not the person who grew up in a difficult childhood in Christchurch, who married a man called Peter and brought up three children to adulthood, who worked and ran a business, who went away to England and Europe a few months ago.
Jenny thinks, and she could be right, that all the things which have gone on in my life since my diagnosis and surgery, such as having family in the house, the MIL’s 100th birthday, Christmas, the wedding, and the eventual departure of the family have all been distractions which have allowed me to put all that has happened to me into a convenient corner in the background of my life and now that it is all over, the family bit and the wedding, I am being faced with the enormity of it all, all over again. So am I back to being that person right at the beginning with the Cancer brain?
My bathroom mirror is quite large, large enough for me to see the mess that was once my right breast and to see those damn dots. As I showered this morning I sobbed and sobbed. It wasn’t just the tears that let rip, it was all the humiliation and anguish. Well maybe not all of it, because I haven’t been able to write this without going through another half box of tissues.