A Baulkham Hills accountant speaks about her journey with breast cancer and Westmead Breast Cancer Institute
My name is Tina.
On 21 April 2016, I was diagnosed with DCIS- Ductal Carcinoma In Situ.
Upon hearing the words, “Tina it’s not good news” my reaction was strange. I was silent for a few moments, the room was a deathly silence, then I told my GP in very strong Scottish accent “OK well, I cannae deal with this I will see you later. Cheerio and bye”. I got up from my seat, tripped and began to cry and sobbed my wee heart out. I didn’t hear or register much of the conversation after that.
“Which specialist would you like to see?”… what do you mean which specialist? It’s not like a hairdresser or manicurist that you know you want to go to. How on earth would I know? I thought to myself, I mean, I didn’t see this coming or was prepared for this news.
You don’t usually discuss breast surgeons, medical or radiation oncologists on a day to day basis over coffee or dinner…. until….. It happens ….until you are diagnosed. That’s…. when it ALL begins. This journey, this survivor-ship. In one day your life changes. The word Cancer is very frightening for people. They hear the word Cancer and many relate it to death, if not death then automatically presume chemo and hair loss.
There is a lot of info out there and believe me too much Info is not good either. I decided to get information online from blogs and forums to hear true stories in lay man’s terms. I needed to know How, What & Why. I needed to be prepared mentally & physically for this challenging journey because everyone kept telling me it’s treatable, its cure-able, you are strong, you will be ok. Okay? I’ve just been diagnosed and no matter what ….it’s a type of cancer! I automatically related it to chemo, radiation, being sick, being weak, and being in pain.
Then came the time to inform the family. How do I do that via phone or text? I can’t Skype or FaceTime as they will know something is terribly wrong when they see my face. I need to be strong, don’t cry, don’t show sadness, but how can I be happy about it? Did I mention that my family is in Scotland?
After meeting with my breast surgeon at the Westmead Breast Cancer Institute, my husband Sunil and I were a bit more reassured. He spoke to me as if I was the one and only patient, spent a lot of time with us and explained the process clearly. I was still confused but he knew what he was doing and that made it better to deal with. However, in saying this – I heard what he said but the info was not absorbed – my interpretation of a lot of it was not what he meant. Such as “Where do you want it done?” was one question. My response in my wee head was why you asking me this? it’s in my breast, where else? What he actually meant was which hospital for the surgery. This question was asked three times before I understood it. I cried a lot during that consultation too.
One very good piece of advice I received a couple of days after diagnosis was; “Tina, those tears in your eyes, the sadness…well cancer loves that! It thrives on it and eats off it. You need to be calm, less stressed. Cancer hates that. I know it’s hard to be happy or be positive just now but this can be fixed. It can be treated”.
I had my surgery and dealt with it the same as any other operation. I looked upon it as an excision, getting better, letting the wound heal then radiation treatment would commence. My issue was Post Surgery Bras! Do the manufacturers think people with larger breast don’t have surgery? I couldn’t find my size! That was hard. I needed the literal support and wore a bra the evening of my surgery but you know what that was the least of the issues that I had yet to face.
My Aunty Mags reminded me about the Scottish saying “Aff wae the Negative Knickers and on wae the Positive Pants”. On my down days I’ve thought about that often and smiled. It sounds funny but believe me some days I just couldn’t be positive and courageous all the time.
Waiting on the pathology results from the operation was hard. Waiting for everything is tough and that’s when the positive pants come on. That’s when if asked instead of saying “Aye it hurts like hell” I would say “Aye I’m in discomfort”. I think half of the time I was just trying to convince myself.
I am an accountant. The day before surgery I processed the fortnightly payroll. When it came to do the next pay run I hadn’t received the staff time sheets, I phoned my boss and she said, “we will deal with it, you rest”. My thoughts were please don’t take my work away from me. This is keeping me focused on something else and giving me the mental stimulation that I need. Not having the stress or pressure of work helped, but I needed the distraction.
I met my Medical Oncologist in May and that was another one of those too much info days. I couldn’t process it, didn’t hear half of it, so glad Sunil was with me. All I took from that consultation was that I had a choice to take a cancer drug to prevent recurrence, which took me to the next stage. Tamoxifen or not?
If you do take it then you are waiting for the all clear. If you don’t take it, you will always wonder am I going to get it again and how soon?
If you do take it and persevere through the side affects you know you have done your best medically. The choices are there but how does one make that decision and is it the right decision for you?
Overwhelmed with so many questions so many things to decide upon.
The multi-disciplinary team are great. You can ask them all the questions you wish – no matter how trivial they seem to you. In the end it is you that makes that decision.
When I met with the Radiation Oncologist in June, I was asked if I had any questions. All I asked was “May I commence treatment after 10th July as I’m an accountant and I would like to process my tax year end. We work all year to see this through”. the radiation oncologist smiled and said “of course we can request that”. Everyone at the Cancer Centre seemed so friendly and informal – that helped me a lot.
Then came Radiotherapy – for me that’s when it hit me.This is it girl, you are going to have to be strong, courageous and don’t lose hope!
As the radiotherapists leave the room I’m left there totally on my own, it’s a strange lonely feeling…lying there I say to myself…just relax Tina it’s only a few moments and it will be over.
After the third session I realise that the machine makes a beeping sound similar to the fasten your seat belts prompts in an aircraft. Also a funny weird cackling noise when radiation is being administered. From then on during the sessions, as I lay there perfectly still, I related the Beep Beep sound as “Welcome to Westmead Linear Accelerator. Thanks for joining us for the session. Today’s journey will be a roller coaster of emotions, turbulence and a tad unpredictability”. The cackling with laughter sound is the machine laughing and letting me know that “ok Tina, we are going to kick butt and boot this cancer out of your body”. That’s how I got through my sessions.
The radiation treatment in itself has been a different kind of struggle. Unlike an operation where you get better each day it’s the opposite with radiation, for me anyway. It unfortunately got worse before it got any better – before you actually see and feel any positive changes from the side effects.
One of the days I cried like a kid, no I sobbed. I didn’t want to go for the treatment but my sister cajoled me into going. I was having a meltdown. Once I got onto the bed at the Radiotherapy unit I broke down and said I didn’t want to go through with it any more! The radiotherapists thought they had offended me until I explained I was in pain and felt I couldn’t cope with it any more. Those two radiotherapists on that day were wee angels. They comforted me, calmed me down, spent time with me, even though I kept apologising and saying I was delaying others, and yep I went back for the remaining sessions.
Last session I thought I would be elated and happy but no…I was too sore and uncomfortable. I just wanted it over with and no more burning or pain inflicted upon me. The following weeks were even harder with the radiation side effects. I struggled and had another meltdown. I really felt I couldn’t cope anymore. I could not see any good in any of the treatment. I was not the usual Tina….
Somewhere during radiation, I lost myself, my strength and my courage was wiped out. I sobbed. I asked for the pain to be taken away. The situation was way out of my control and I couldn’t do anything about it. Those around me were helpless.
It’s part of the treatment and to be expected…how cold that sounds when you are merely existing almost in a zombie state with all the strong pain meds. I couldn’t see past the day. This one day at a time scenario was just a waste of words.
It’s hard. It’s difficult and I struggled to cope with it. Even though I had been informed and read about the possible side effects and yes I know we all react differently. Some days I lost my so called positive pants or left them behind in the changing room at the radiotherapy unit. A few weeks after my last session I had something back – a pain free but fatigued Tina.
I’ve met so many wonderful people on this journey and could not have got through without my support network. I would like to add that the staff I came across were always happy and had a smile on their face no matter how bad their day had been.They were always helpful and very supportive and this definitely made it easier for me. You end up having a bond with them as you see them every day for weeks on end.
I would like to inspire and assist others as I proceed through my life. Today, I as a survivor, am here with gratitude for the support I received from BCI. I walk to honour those that have lost their battle with breast cancer. I hope more lives will be saved with increased screenings and mammograms. For Early detection is key to greater survival rates.