Written By Sonia for Write Your Cancer
When it All Began
Tuesday, 17 December 2013 – an ordinary day. We were in the last days of getting our pool put in and the solar guy had arrived.
I remember saying to the solar man – I have an appointment and will be back in two hours. I went to the Mater Hospital for an ultrasound and mammogram. Little did I know I would be gone ALL day.
Once I arrived at the hospital – the routine mammogram took place. I sat in the waiting area and spoke to a lovely Italian lady who was telling me she was going to Italy for Christmas. I was then called back for a “second” mammogram. The signs around the room say not to be concerned if this happens. So I was not.
While waiting I noticed women were being given a green ticket and sent on their way. I waited for mine ……
I was then called in for the ultrasound. After the ultrasound on the right breast I casually said to the radiographer “So all is good then” not really expecting anything said other than “yes”. But I was given the “Ummm, well no actually.” I didn’t really comprehend what was said and “cancer” did not enter my mind.
I was told a doctor would come in and speak with me and a core biopsy will need to be performed. I said that’s fine I will book it when I leave. I was told, no, you will need it done now. I thought really? So back in the waiting room I went and started reading the brochure about core biopsies, all the while still watching the other women receiving their green tickets. Mine never came.
I was then called in for yet another ultrasound. A beautiful Indian female doctor came in and explained what was about to happen. I had the core biopsy done and was told they would mark it urgent and that I should make an appointment to see my GP.
I went home feeling quite sore, confused and a little worried.
I had the “if you don’t hear anything – all is good” motto in my head.
The next day my husband phoned me on the home number and asked if I had heard anything to which I said no so all must be good. At that moment my mobile rang. It was a nurse from the doctor’s surgery. She said they have made an appointment for me to attend on my GP at 9.00am the next day. I said I knew what this was about and could I just have the results as I had to work on the Thursday and Friday and then I was on holidays for Christmas. The nurse on the phone said in no uncertain terms, “If the doctor wants to see you it cannot be good news”. Uh Oh!
Being loyal to my job I said to the nurse on the phone that I was sorry I cannot come tomorrow but have made an appointment to see my GP on Christmas Eve. It will just have to wait until then.
The next day I phoned my GP and left a message for her to ring me regarding the results.
Getting the Phone Call
The phone call came in the afternoon. I took my mobile outside the office and stood in the hallway. My GP said she was so sorry and didn’t want to tell me over the phone but I had breast cancer. After that she talked for quite a bit but nothing sank in. I didn’t really hear what she said.
I went back into the office and my boss asked if everything was all right. I said “yep” and went back to typing all the while thinking “I must phone my husband”.
And so began the journey …….
Something difficult was telling our children aged 10 and 13 at the time. After convincing them that I was not going to die, they accepted what was happening. My husband and I said we would tell them everything and keep nothing from them.
I was diagnosed with a Core Grade 3 Invasive Ductal Carcinoma (1.4cm). I was also a negative hormone receptor meaning my treatment was already determined. No Hormone Therapy treatment for me.
Being Christmas Eve and sitting at the GP’s office was a little ho hum. My GP was brilliant. She had the task of finding a surgeon who would be available to see me over the Christmas holidays. With a lot of phoning around we found a surgeon and I was booked in for surgery in early January. I had no idea of what lay ahead. My thoughts were – that’s great. Take out the cancer and that would be the end right? Right? Wrong!
I am a Christian and have a very strong faith. Now enter God …… This is where God showed me he would never leave me …..
Finding the Right Surgeon by the Grace of God
Once I had found a surgeon and was booked in I spoke to a very good friend of mine who said she remembered hearing the name of that surgeon from her friend – and it was not a good thing. She contacted her friend who had used the same surgeon through her “first” breast cancer. He botched her surgery and walked out on her and her husband when she asked for a second opinion. When her cancer came back a “second” time she found a different surgeon whom she highly recommended I see.
It was because of this that I changed surgeons. As it was Christmas, his offices were closed and he was on holidays however after leaving a phone message the surgeon phoned me personally while he was on his holiday! He was ever so lovely and caring. He told me he was booked up when he came back from holidays but if it was okay with me and my husband he would see us at the end of his day. Well of course we were!
On 2 January 2014 at around 7.00pm we met our beautiful surgeon, Professor Owen Ung. He was a very humble and kind man. He spent a full hour with us. My operation and “mapping” were all booked in. He had been completely booked up for operations for the next six weeks. However an opening just happened to come up and I was put on the operating list for the following week.
On 6 January 2014 I had to attend at St Andrew’s Hospital for a “mapping” session. I had no idea what was to take place. Basically I had to be completely still for five minutes at a time (having been injected with dye – ouch!). My husband and the mapping guy said they didn’t feel a thing! The mapping was to mark out the lymph nodes ahead of the operation.
The next day on 7 January 2014 I was booked in for surgery. It’s funny how doctors do not tell you “everything about everything”. I understand why – it would have been too much to take in as well as coping with “you have cancer” diagnosis.
I was told there were two possible scenarios for surgery:
- Conservative surgery removing the cancer with a wide 4cm excision.
- Remove the cancer and take out the first lymph node. If positive conduct a sentinel node biopsy.
After surgery I was told there was cancer in the first lymph node and therefore the sentinel node biopsy was performed as well as an axillary clearance.
After the operation when I was allowed to eat I remember I could not even lift my fork. My hand was not working and it was my right hand! I could not lift my arm to turn on a light switch or even brush my teeth. This was quite concerning for me. I was given arm and hand exercises that had to be done every day, three times a day and painful.
My stay in hospital was for four days. I had a drain in my back to collect the “waste”. I thought when I went home the drain would come out – uh uh. No the drain had to come home with me and stayed in for ten days. I dragged it around like a tail – much to my daughter’s disgust. My husband was brilliant and drained the drain every day.
On the 10th day we saw the surgeon again who removed the drain and we were told the good news was the cancer was only in one lymph node. The bad news was he removed every lymph node as a precaution. I had 32 lymph nodes removed. None left now on that side! Hence problems down the track with lymphodema.
We were also informed that as well as radiation I would need to start chemotherapy.
And So Chemo Begins…
So began the next part of my journey.
I was told recovery from the operation would take 18 months to two years and however I was feeling after two years – that is how I would be. I just thought I would get completely better. Isn’t that what happens after an operation? Not in this case! Almost two years on and I still have problems with lymphodema. My hand and arm swell and get very sore.
It took months for me to be able to raise my arm. And even now it only goes a certain way. I have numbness down my back, under my arm and on the back of my arm. A positive though – I never sweat on that side! It took eight months for me to finally lie on my tummy at night and is still uncomfortable to do so.
Every morning I wake up and my arm is just blah. Very tight. The scarring I must say though looks great. It is a 10cm scar and the surgeon did a brilliant job. Every time I have a scan I get complimented how great it looks!
Whilst being in hospital and at home I had time to think and reflect – and pray!
These were some of the texts I sent to my pastor at church:
“I have been overwhelmed how God is with me throughout this journey. So many things I can see how God is in control – from the start in finding the right surgeon who I never would have known about if not for a lovely Christian lady’s recommendation – to being put on an operating list that just happened to become available.
I couldn’t sleep last night and just listened to my Christian music. I had a big cry out to Jesus and I know He is with me.
I don’t know God’s plan in all of this but I know He is with me through everything.
… I am going home today and depending on pathology results will depend on treatment. I didn’t think this would be such a long journey – I like everything done instantly. God is teaching me patience!
7 February 2014:
I’m actually doing okay. I started chemo last Tuesday. I feel a bit blah. So many new feelings – daily migraines, sore mouth, ulcers, food tastes like metal and feels like I am eating glass, ridiculously tired. My prayer was not to vomit and praise God – I haven’t!
My arm is still recovering due to the nerves being cut but that does not stop me from tinkering on the piano or typing. I am taking a day at a time. Every day I wake up and am not vomiting is a good day! Four and a half months of chemo and six weeks of radium and then I am done!”
So I thought – I would be done.
God and His Blessings
God’s blessings were continual:
To start with my husband was a-mazing!
His life was as shattered as mine and he kept me going – especially when I wanted to give up. There were days I would just lie in bed and ask Jesus to take me home to Heaven – I am done with this chemo!
I had three cycles of three chemo drugs known as FEC. Then three cycles of Taxotere. That was the bad chemo. Horrible side effects.
I was so over chemo – I would phone my Oncologist’s secretary after each cycle and tell her I was not coming back! Well she wouldn’t hear of it and kept encouraging me.
Ahead of my were six cycles of chemo the first one starting on 28 January 2014 – the first day my son and daughter started back at school. That was tough – trying to be excited for them for the new school year and life was crumbling around me.
My husband had to come home exactly 24 hours after each chemo cycle finished and give me an injection into my belly. Who else would do that? He would. He was brilliant. He took days off work; some days he would come home from work during the day just to check on me; did my shopping; cooking; injecting; consoling me and constantly encouraging me to keep going.
I had blessings left, right and centre from family, friends and even acquaintances I would never have expected.
God took control and took care of all my needs.
I had meals brought to the door from a neighbour – every Saturday night for six weeks.
Meals were brought in from family and friends. So I guess my husband didn’t cook THAT much!
I was given flowers, chocolates, cards, phone messages, teddy bears, food parcels and had my constant prayer warriors.
My children were taken to and from school so I never had to worry about them.
I was blessed with a house cleaner for eight weeks. This was out of the blue from someone I would never have thought would do such a thing. It was great as I was unable to use my arm.
Not to be ungrateful, as I really was, but one day I was praying telling God I appreciated all He had done to help me but if someone could just do my ironing as I could not lift the iron. God was quick to respond. Ten minutes after praying I received a text from my neighbour across the road whom I only ever say hi to or have an occasional chat with. Her words were, “I’m just about to do my ironing and thought I would ask you if you wanted yours done”. Well I nearly fell off the bed. I was speechless. Just like that!
Chemo and the Side Effects…
Getting back to chemo – two weeks after I started chemo my hair started to fall out. I made the decision to shave it off. That was a really hard day for me and I was struggling with my decision. I was very teary. Then at my doorstep the postman dropped off a card and teddy bear from a friend who just wanted to encourage me.
The chemo side effects were just cruel. From nausea to losing my nails and everything in between.
Four months after starting chemo I noticed I was getting hot flushes. I had a blood test done and it was confirmed I was in menopause at the age of 42. All because of chemo. I know the saying: have to be cruel to be kind, but the side effects were ridiculous. I am unable to take any HRT tablets for the hot flushes as I am susceptible to it causing the return of breast cancer.
Two years on I still suffer from hot flushes, sore muscles and fatigue. The muscle pain was so bad I actually thought I had bone cancer! I was reassured from my oncologist that it is a side effect of chemo. Once again – cruel. I still have trouble walking up stairs or hills and get pain in my upper leg.
Three weeks after chemo was finished I was straight into radium. I thought just a zap or two – nothing major. Wrong!
Chemo Ends and Radiation Begins
Radiation began on 10 June 2014 ending on 24 July 2014.
On 27 May 2014 I went in for “mapping” and received four tattoos. Over 6½ weeks I had 30 zaps of radium in three areas: neck, chest and breast. The last five were known as booster zaps and were only given on the tumour area.
By zap number 17 I was getting quite red and sore. Fatigue once again set in – still lasting up until today.
I think the tiring thing was travelling every day out to the hospital. I went five days a week however had every second Wednesday off due to the maintenance of the machines.
It wasn’t all bad though – God does have a sense of humour I believe.
Music was played during the six minutes of radium zapping.
Some examples were:
. Boy George – Do you really want to hurt me?
. Madonna – You abandoned me … (as the nurses left the room)
. ABBA – Mama Mia, here we go again.
. The Corrs – Forgiven, not forgotten.
Trying to keep still and not laughing was quite difficult!
Once again God knew how to cheer me up. On my last day of radium I went in and it was the first time they did not play any music. Odd I thought. So in my head I started singing “I Wanna Dance with Somebody” by Whitney Houston – my little celebration song.
When I left that radium room (on my own as I came from work) for the last time my sister-in-law was standing in the waiting room and surprised me with a bunch of flowers, card and fudge. We hugged and cried with happiness. I then took a train back to work. As I walked through the train station a song came over the loud speaker – right on the words, I Wanna Dance with Somebody! Unbelievable. I laughed and cried to myself.
Cancer, Chemo and Radiation Tips…
Some little tips to get through chemo and radium.
- Salted plain chips/popcorn
- Sleep – lots of sleep
- Accept help
- Worship Music
On 1 September 2014 – yes the journey still continuing. I went back to my lovely Radium Doctor for the last check up. To hear I did not need to see her any more was music to my ears! No more radium – ever!
Once I was done with the operation, chemo and radium – it was time to get well.
Life After Chemo and Radiation
I thought once chemo was finished I would not need to see my oncologist any more. Wrong. I then had three monthly visits which then turned to six monthly and two years down the track I have just graduated to my next visit will be yearly.
The surgeon is the same for check ups. I now see him once a year until I reach a five year clearance.
During chemo I started a scrapbook so that I could always look back and see what I went through and how far I came.
I took photos every six weeks from being bald to my hair growing back.
The scrapbook started on 17 December 2013 and ended on 17 December 2014. On 17 December 2014 I went to the hairdresser for the first time since I had my head shaved.
I wrote the end of my scrapbook way before the ending. It was to encourage me to keep going. The three things that got me through was my faith, my music and Jesus. God did not GIVE me cancer – he got me THROUGH it.
The journey still continues and when I hit the five year clearance mark that will be a huge celebration.
2 Years On
So how do I feel two years on? And when is it two years anyway? Is it from diagnosis? From the operation? From treatment ending? I am not a very patient person so for me my journey began on 17 December 2013 with a biopsy. That is the start of my journey and on 17 December 2015 I had my two year clearance!
Every day is a reminder that I had cancer. Having pain from the operation is a reminder. Not having full movement of my arm and the numbness is a reminder.
Since 7 January 2014 I have not had one night where I have slept through. Initially due to the pain from the operation and then the hot flushes that wake me two to three times every night.
The chemo effects are a reminder. Radium effects a reminder. The latest is scarring on my neck due to the radium. I was told two to three years after radium, scarring appears and only gets worse as the years progress. I must have missed that information session! I have had my oesophagus dilated 4cm to try and stop the constricting feeling in my throat.
Overall though I am feeling okay. I am used to the “new normal”. I have read many encouraging scriptures to see me through. My favourite one being when I am weak – then He is strong. I see how big God is when I am feeling weak.
I can cope with a normal day now. Though there are times I just need to stop – like instantly stop and lie down – even for just 30 minutes. My body tells me when I have had enough.
For the muscle pain, my oncologist says just keep walking. Walking is better than medication. But sometimes it hurts to walk! Just keep walking …..
I do get a lot of compliments on my hair now that it has grown back – curly. I usually say thank you unless they ask if it is natural. Natural? Hmmm. I call it chemo hair. Sometimes I explain, sometimes I don’t.
Do I tell everybody I meet that I am a cancer survivor? Sometimes yes, sometimes no. I don’t want pity. I want to use my story to encourage people that they are not alone. God is an amazing God and loves us so much. He uses our journeys to help other people on theirs.
Throughout this two year journey as it currently is – I walked with three friends who were diagnosed with cancer and now my brother-in-law has recently been diagnosed with cancer. Four people – all walks of life – all battling different cancers. Two of these friends have since passed away. The other two are battling through their own journeys. Their cancers are different, their treatments are different, their pain is different – but they are both cancer patients and both going through a journey and my heart breaks for them when I see their suffering.
I now volunteer three hours a week at the Mater Hospital checking people in for surgery. Every week there are one to four patients about to undergo a lumpectomy for breast cancer. There are patients coming in for bone marrow biopsies. This breaks my heart. Sometimes they are with family, sometimes sitting there on their own. I don’t get the chance to sit and talk with them, but it is my chance to silently pray for them as I watch the fear in their eyes. My prayer is that they find the strength to get through the day, through the operation and what lies ahead for them. I don’t know if my prayers are ever answered, only God knows.