My journey with cancer
Hearing you have cancer is always a shock, but then what? One woman shares her diary of the rollercoaster weeks after her diagnosis.
A little bit about me. I’m married and 53 years old with two sons in their early 20s. After working as a dental nurse, horse trainer and then investing in real estate, I recently retired. Six months ago my husband and I finally found the place by the sea that we’d always dreamed of. We are now in the process of moving in.
I am a crazy aquarium fish-keeper and I am never sick. When everyone at home gets man flu I get to be the nurse, chief cook and bottle washer. I am fit and healthy. Or so I thought.
2 October 2015
My left breast seems a bit flat and more solid in one spot near the top and a vein is showing. It seems a bit odd so I make an appointment – my very first with the doctor in my new area.
The doctor orders a blood test (I haven't had one in over 20 years), mammogram and ultrasound. It doesn't seem too good but being Breast Cancer Awareness Month I thought, “Go for it – you won’t be getting me in here again!”
In addition to the tests, the clinic also does a needle biopsy. There is no anaesthetic. The bruising is terrible.
9 October 2015
I saw the doctor today. He tells me: “It’s a malignant tumour in your breast .” That doesn't sound good, that word malignant. I am not up on any medical terms at all.
The only good news is a blood test that shows the ‘sed rate’ [sedimentation rate – an indicator of inflammation] is low. The doctor seems happy with that. When he asks if I am taking any medication, I say “No, apart from the contraceptive pill I’ve been on for most of my life.” He tells me to stop taking it because it may be affecting the cancer.
The doctor orders a CT scan of my chest, pelvis, stomach area and bones to make sure there is no cancer lurking about elsewhere. I stagger out of the surgery in a fog, armed to the teeth with more tests to get done. I book in for another appointment with the doctor a week later.
When I get home, I quietly tell my husband what's going on and he is left with his mouth hanging open. Then my mother and stepfather turn up. Mum almost collapses on the floor, clutching me and bawling. I feel like saying, “It’s my world that just came down around my ears, not yours.” But I say nothing.
After they leave, I tell my boys, who live downstairs. The younger one seems concerned and caring and the older one says, “I don't know how to respond to that.” I say, “Me neither!”
10 October 2015
The CT tests were interesting. You lie on a bed, a needle goes in your arm, then the bed goes in and out of a large ring. It isn’t too bad, just a little scary. The girl is lovely, however, and helps me feel settled. The test centre will courier the results to my doctor’s office today and he’ll let me know when he has them.
13 October 2015
I am getting concerned. It’s Tuesday and the doctor hasn’t called about the results. I leave a message for him and say the bone scan is scheduled for tomorrow. He never rings back.
I’m really starting to get worried as I know nothing about cancer. No-one on my mother’s side of the family has ever had cancer – they all died in bed at a ripe old age.
A friend who’s a GP tells me how to source the ultrasound tests online. The mass is 2.5cm and in the shape of a goldfish! It looks to me like it has ‘fins’ and even a googly ‘eye’. She says the low sed rate on the blood test is very good – the cancer might only be in the breast.
I talk to my sister-in-law who explains a bit about her battle with breast cancer. I never knew she even had it. She is a wonderful woman, as tough as they come, and hid it well.
14 October 2015
Bone scan today. Still no word from the doctor so I ask the medical centre about the CT results from last Friday. The receptionist is surprised the doctor never got back to me. She says there's nothing bad and prints me a copy to take home. Some nice news for a change.
I have an injection two hours before the bone scan and pop out to see my sister for a cuppa. She is great and treats me like everything’s normal. No blubbering, just caring like a sister should be.
What they didn’t tell me about the bone scan was that the bed goes into a tunnel and a screen comes down a few inches from your nose. Your arms and legs are strapped and you aren't allowed to move for a predetermined time period. Mine is 40 minutes.
I’m claustrophobic in low places, having been trapped under a barn floor as a kid. I close my eyes, try breathing normally, get my heart rate down and ignore the pounding in my head from stress.
I count to 100. It’s not enough to concentrate on, so I do it slowly in twos in time with my shallow but slow breathing. Another 100, another 100… and finally the time is up. I got through it!
The technician says I can go, but I can’t even stand, let alone walk. I stay on the bed for a few minutes and slowly leave the room.
16 October 2015
Doctor’s appointment. My husband goes in with me, not so much for support but to be an extra ear in case I miss or misunderstand something the doctor tells me . Also to protect the doctor, as I am pretty livid that no-one got back to me on the test results and I had to ask for them. The bone scans show nothing apart from slight arthritis in my right thumb.
There's also a fibrous build-up showing in my pelvic test , so the doctor orders an ultrasound to check it. That's going to be fun.
That afternoon, I get an external ultrasound, then an internal one. In the end, the fibrous growth is nothing serious, though I do need to keep an eye on it.
When I speak to my GP friend, she says she checked with the local hospital and I have an appointment to see the surgeon on Tuesday. But I’ve received no notification or calls. I don’t know what’s going on.
Did I mention I never get sick? This is all so frustrating.
19 October 2015
No letter or call from the doctor so I ring the hospital and discover I have an appointment tomorrow. (The post office discovered my letter when my husband called about it.)
The receptionist at the hospital says I am rated “category one – urgent”, so things might get happening quickly. I try not to imagine all sorts of bad things but they just sneak into your brain. There’s a bottle of red wine I would dearly love to get into but I had better behave.
I hate hospitals and have avoided them like the plague – now I am stuck going to one.
20 October 2015
At the hospital, a trainee nurse measures my height and weight. I knew my bathroom scales were lying all these years – I am NOT 82 kilos, I am only 79!
The surgeon prods around my breast and armpit and decides he would like a detailed armpit ultrasound and biopsy. From there he thinks, pending the biopsy results, it might be two to three weeks before surgery.
The surgeon also emails the McGrath Foundation
(who provide free breast care nurses ). Later that day, a lovely lady from the Foundation rings and says she will see me before the biopsy, explain everything and fit me for a bra.
22 October 2015
The McGrath Foundation nurse gives me a book for women with early breast cancer, a pillow with a neck tie to support my arm after surgery (homemade by local volunteers) and a little bag to support my surgical drains should I want to be out and about after surgery (homemade as well). She also fits me for a prosthesis bra, which will be posted to me.
She answers all the questions I have and assures me she’ll be available every step of the way as support.
I also have the underarm ultrasound and a further breast ultrasound. The nurse assures me the cancer hasn't gotten any bigger in the couple of weeks since the last one, even though my mind thinks it has.
The lymph node ultrasound looks pretty normal so the doctor – a lovely man who explains everything and is quite upbeat and cheerful – decides to just do the core biopsy on the breast.
After it’s all done, I sit quietly with an icepack over the area for 15 minutes to help minimise the bruising and swelling . When the local anaesthetic starts to wear off, we call into the supermarket for a packet of frozen veggies. Wrapped in a cloth, i t’s heaven tucked under my arm!
Hopefully the test results will be in by Tuesday’s consultation when I need to decide if I want a lumpectomy or a mastectomy.
23 October 2015
GP visit today. He still hasn't got back any comprehensive reports from the needle biopsy, which is annoying him. My breast is also all bruised and itchy. I tell the breast to “enjoy bugging me while you can – soon you are gonna go!”. I take a few pics for my own records while I have two ‘headlights’ instead of one.
27 October 2015
Saw the surgeon today. The biopsy says it is an aggressive carcinoma . I have both the senior surgeon and a trainee doctor this time and I get them both to check the report on the other breast, to make sure it’s just the one. They confirm it’s just the left breast.
Scheduled a mastectomy for 16 November, unless they have a cancellation for earlier. At least I can now plan my housework and get things ready.
3 November 2015
I got a haircut! After having long hair for years and years, gee it feels weird. But in preparation for the thought of possibly losing all my hair , I thought I had better start getting my neck and back muscles used to not having a kilo of hair hanging down. The shampoo and conditioner will last a lot longer now!
Saw the anaesthetist today. My husband and I both like his light-hearted manner and quite enjoy the appointment.
Blood tests next week and hopefully the week after the operation to ensure we’ve got rid of the cancer.
Just because I sound happy now doesn't mean I haven't had some really bad dreams and panic attacks since the diagnosis. And all the menopausal hot flushes, which have started since going off the Pill, are challenging. But it all passes.
6 November 2015
Saw the GP today. Tell him I am sure since the core biopsy, the cancer has doubled in size. He doesn’t seem to be too concerned. Feeling around, I’m pretty sure it has gone into the lymph nodes as it’s sore and lumpy in a couple of spots.
This whole process seems to be taking so long! I remember the doctors being so pleased we'd caught it early and now I just feel like they are squandering that lucky break by making me wait six weeks from my first doctor’s appointment until surgery.
I just get so frightened. If my lymph nodes get involved, this is my left arm and I am a leftie. These hot flushes since going off the Pill are driving me nuts as well.
And because I’m trying not to get any cuts, colds or bug bites before surgery, I am practically doing nothing. I’ve noticed my skin has become quite dry and thin too.
Gee, I hate cancer.
9 November 2015
I had my pre-op blood test done today. Then I went shopping for some nice women’s singlets .
I spoke to the McGrath Foundation nurse as well. It was like greeting a long lost friend. She asks how I’m coping with the waiting. It is what it is, I say.
I tell her that I thought the cancer had grown but she says that since it’s a mastectomy, it probably doesn't matter so much. She says she will email the surgeon anyway.
I’ve been worrying so much about the cancer and surgery, I’ve lost another two kilos. I’ve been trying for years to lose weight and now it just falls off me! I’ve lost five kilos since the diagnosis.
10 November 2015
Saw the surgeon today. He says the lymph glands that were swollen have gone down now and reassures me that they would have increased in size from the biopsy, not the cancer.
The smaller lump on the other side of the nipple is a fatty cyst and because the tumour and the bruising have taken up so much room, it’s become more noticeable. The doctor says that, no matter what happens, anything unusual will be picked up in the pre-op tests when they inject radioactive dye into the area.
15 November 2015
’Twas the nite before surgery and not a creature was stirring, except me having my last supper before midnight. I know I am not allowed wine so it’s ginger beer and Vegemite on toast.
16 November 2015
I get up early and walk the dogs on the beach. It’s the perfect morning.
My stepfather runs me to the first hospital for the radioactive dye test because my husband has a blood test somewhere else. I feel a little on my own even though my loving stepfather brought me in – it’s just not the same without my husband.
At the surgery, I’m asked to lie on the scan table and four syringes of radioactive dye are injected just under the areola [the circular area around the nipple]. The thought of it was awful but it doesn’t hurt that much at all.
After 10 minutes, the dye hasn't spread anywhere near the nodes, so I have to go out into the waiting room for an hour or so. After another failed attempt and a few more hours, the nodes are finally highlighted, marked on my skin and an X-ray taken for the surgeon to view.
I’m shown to a day surgery waiting room at 11.30am where my husband keeps me company. At 1pm, my name is finally called. Hubby jumps up and ushers me in with not so much as a good luck kiss! Sheesh. I understand that he's stressed but come on, make an effort.
A lovely lady shows me in to a pre-op room and I’m asked to undress down to my undies and put on a purple gown. She also gives me pressure stockings for my legs. I’m weighed and measured, and given two pre-op paracetamol with water.
She asks me my date of birth, address, name, next of kin and second next of kin. When she asks my marital status, I say my husband didn't even give me a kiss goodbye, so we’ve clearly been married a long, long time – and that’s also why he could get away without kissing me and live!
I’m shown onto a bed and wheeled down to the pre-op anaesthetics section. They put a mask on me for about five minutes with some medicine to open up my airways and help with oxygen and good blood supply. Then the anaesthetist puts in a cannula and after a few moments I’m wheeled into the theatre.
I don't really remember much at all after that. I only get my mental awareness back when I’m back in my ward’s shared room with three others.
When I wake up my husband is there so I know all is well. My mother and stepfather are there too. It’s nice that they came and wanted to wish me well, but there are some moments in life, like waking up with no left breast, that you just want a few moments of privacy.
17 November 2015
Life with one headlight is a lot to take in. Loss of a breast, bag of plasma from the wound to carry around, tube out of your chest – I don’t feel very dignified.
After a fitful night of throwing up and waking to alarms with drips, I finally manage to hold down some breakfast. The surgeon, along with a number of trainee doctors, sees me about 9am. He checks my wound and seems pleased with it. I had looked at it in the bathroom mirror and I was pleased as well.
“Neat job,” I tell him and shake his hand. He’s a little embarrassed in front of his colleagues but I think he’s happy for someone to thank him for his good work.
He says I can be released, so I’m happy. After the nurses locate some lost paperwork and I finally manage to reach my husband, I go home!
19 November 2015
This nausea is the pits! I have a suspicion that after all the worry about the cancer, the surgery and what would come after, I might have developed a bit of a “stress belly”.
I call the breast cancer nurse and she said it’s fine to take an antacid to settle my stomach. Gosh that stuff is magic.
Sometimes the pain is a bit more than ibuprofen can handle and I resort to paracetamol. But I seem to be on the mend now.
I do see what people say about taking things one day at a time. If I think further ahead than one day it overwhelms me and I get a little panicky.
20 November 2015
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Like many young people (yes, I am 53 not 23, but that's still young!) I thought I was pretty much bulletproof and being sick was for really old people .
Cancer has made me more aware of things going on around me – things that have always been there while I trampled through life not appreciating them. Things like the little yellow dandelion flowers all waving in unison in the breeze on a lovely warm sunny day. Or the sea eagles soaring in the thermals above the beach. Just loving life every single day.
I have a long road to full recovery but if I try to just worry about today and not tomorrow or yesterday, I think I will make it. I have plenty of neighbours and loved ones who are counting on me to become a cancer survivor.
If you or someone you care about has recently been diagnosed with breast cancer, contact Breast Cancer Network Australia (BCNA) for a My Journey Kit, a free information resource for newly diagnosed women: 1800 500 258 or www.bcna.org.au