I wish I could tell you that staying positive was simply a matter of deciding to be happy. Sadly no. Let’s face it, I’ve got cancer.
There have been tears and moments of almost overwhelming fear. There have been times when my mind leads me down a chain of ‘what ifs’ into a deep well.
I think it’s unreasonable to expect anyone, other than perhaps a highly trained Buddhist monk, to maintain an uninterrupted state of feeling positive.
For me, the challenge was to recognise what I call ‘crooked thinking’ and to correct it as soon as possible.
It helped that my first meeting with the surgeon was so encouraging. Apart from looking at my ultrasound and saying that it looked like a primary cancer, even though the pathology offered secondary cancer as an option, she also said this:
“There’s nothing experimental about this. We’re very good at treating breast cancer.”
I wrote it down.
I posted it on facebook and repeated it over and over again to anyone that asked how I was doing.
When you’re my age your paradigm for cancer includes painful treatment with horrendous side effects followed by a likelihood of early death. Okay, perhaps if someone close to you has had a good outcome you’re better informed, but my only direct experience of cancer was my father’s terminal bladder cancer over a decade ago. I’ll spare you the details. It’s enough to say that if you imagine horrible and then double it you’re close.
I realised that research, pharmaceuticals and medical treatment have all come a long way since my Dad died. I am forever grateful to a friend that I met at the 50th birthday party of another girl friend; she’s a breast cancer survivor and she’s had a double mastectomy. When I posted my diagnosis she immediately got in contact and shared her invaluable advice and insights.
There used to be an ad on television many years ago where a couple are waiting in a doctor’s office, anxiously expecting test results. The doctor says to them, “It’s okay. It’s only cancer” and they all laugh with relief. The ad was designed to raise money for research in the hope that one day, cancer would be “a word, not a sentence”. We’re not there yet, but the prognosis for many cancers has improved exponentially over the last decade. This is particularly true for breast cancer.
In the week following my first visit to the surgeon I was scheduled to have an MRI, a CT scan and a bone scan to check for any other cancer. Apart from my concerns about the possibility of having cancer somewhere else in my body I was also worried that I was, so far, not receiving any medical treatment for my cancer. I’d arrived at the surgeons prepared to go straight in and have a double mastectomy. My husband had said, within days of my diagnosis, “I want you to know that I love you and that you are not your beasts. If having them removed will save your life then that’s not going to change the way I feel about you. The most important thing is for you to be well and for the two of us to have a long, long life together.”
To our surprise, the surgeon told us that mastectomy didn’t give me any better chance of survival than having breast conserving surgery where only the cancer and a margin of tissue was removed. She told us that there was also a school of thought that leaving some breast tissue might be the best thing to do, as any further cancer growth would be most likely to occur in this tissue rather than somewhere else in the body. That made sense.
The surgeon also asked us to think about having chemotherapy before surgery. She said this might be a better option for my cancer and that because triple negative cancers were aggressive they were more likely to respond well to chemo. Finally some good news about triple negative cancer!
Meanwhile I had a week of tests. This was a challenge.
I coped by reminding myself that even if I had cancer somewhere else in my body it was better to know, and to have it treated.
I did everything I could think of to remind myself to be grateful. I reflected on how lucky I was to have received a letter from BreastScreen when I did. I learnt that triple negative cancer often doesn’t show up on a mammogram and was grateful all over again for the wonderful technician at BreastScreen that had found it. If not for her I would be walking around thinking I was cancer free while those tumours spread around my body. I was grateful for the unusual nature of my cancer; notorious for putting down the first tumour in your breast and then heading off in search of major organs, my cancer had grown all of the tumours within a few centimetres of each other and all of them were confined within my breast tissue. Lucky, lucky, lucky.
Each time I went for a test I commented on the amazing technology, I complimented the staff on their life saving work, and I practiced a kind of waking meditation where I deliberately slowed my breathing and relaxed my body.
The first test was the MRI and apart from being fascinated by the three dimensional image of the cancer, I was struck by the obvious difference in the size of my breasts. My left breast has always been slightly larger than my right. I can remember looking in the mirror during my regular self examination about three months ago and thinking, “My left breast looks a bit larger.” At the time I dismissed it as age and gravity. From now on I’m adding a new procedure to my self examination and I’m recommending it to my friends; bend over at the waist and look at your breasts. If you notice any change from month to month, get an ultrasound. What looked like a small change when I was standing becomes a really obvious difference when I bend over.
My MRI was followed by another ultrasound to confirm the MRI results. I was shocked by the presence of four tumours. BreastScreen had only picked up three. Had the cancer grown another one? The doctor checking the test said she thought it likely that I had always had four tumours and that one of them had been positioned behind the other in the original scan. The positive for me was that might confirm the pathology. If my hidden tumour was my primary tumour it would explain why the others had tested as secondary tumours.
I was also relieved to learn that there was no evidence of tumours in my right breast or in my lymph nodes.
The CT scan seemed straight forward. The staff were lovely and I told them so. I was given something to drink and told to come back later for the bone scan.
The bone scan machine moved me through the equipment and I heaved a sigh of relief, assuming I was done for the day. There was a bit of a delay and then a technician came in and moved me onto my side. Another pass. Another reposition. Another pass. About now I’m starting to battle some mild anxiety with some deep breathing and reassuring thoughts. They asked me to wait outside. Then I was led into another room with another machine for another scan than concentrated on the lower half of my body. This was starting to feel like my worst nightmare.
I always have to remind myself that it’s my body and it’s okay to ask questions when I’m in this kind of situation. I don’t know why I feel intimidated into silence. Perhaps it’s the way your results always come in a sealed envelope addressed to a doctor, as if you’re not allowed to know anything. I understand why they do this. Reports with lots of medical terms can be distressing and confusing to people. The places that perform the tests want you in and out as fast as possible so they can put someone else on the machine. Sensible, but very distressing when you find yourself in my situation where clearly something isn’t right.
I said to the technician, “This seems to be a bit more than standard procedure. Have you found something?” He looked nervous. He looked away. Then he said, “Um…..you probably don’t want to hear this….” (insert longest pause of my life)”….but we think you have arthritis.”
Arthritis! I nearly fell off the table laughing! “Oh sweetheart, I have breast cancer! I should live long enough to complain about my arthritis!”
By the end of the week my results were promising. There was no sign of any other cancer anywhere else in my body. I have arthritis and something called a bone island in my femur (benign) but otherwise my only problem is four triple negative cancer tumours at 10 o’clock in my left breast. Lucky, lucky, lucky.
The sun came up. I became fascinated by the quality of the light in this part of the world in late winter. Monet light. It makes me want to paint. The magnolias came into bloom and the weather started to warm up a little. I was heading back to the surgeon with the best possible news, ready to start treatment. I was feeling strong and ready for the fight.
I put together a gift bag full of gourmet teas, good coffee and tasty biscuits and delivered them with a card to the staff at BreastScreen. I included in the card my heart felt thanks to the wonderful technician that gave me the original mammogram. I don’t know how long I’m going to live. Nobody does. But whatever time I have beyond the next twelve months I owe to BreastScreen and that wonderful woman. I will never stop being grateful.
My husband wrote me a ‘to do’ list. Here’s what it said:
“Things to do today. Whatever the fuck you want.”
Brilliant. How I love him. He told me that from now until I’m well my only job is to do everything I can to support my own recovery. One of my friends referred to it as climbing a mountain. I like that analogy. I know it’s going to be hard work and there will be times that the climb is exhausting. I also know that when I feel overwhelmed the best strategy is to take a rest and enjoy the view.
“When the dog bites, when the bee stings, when I’m feeling sad, I simply remember my favourite things and then I don’t feel so bad.”