Amanda P’s Story

I had always had issues with my monthly cycle and had once been told I had an abnormal pap smear result. I did not follow this up as the doctor had said “it was nothing to worry about”. Having been sexually assaulted in the past I was quite happy to let the follow up pap smears slide as every time I had a pap smear done it was always traumatic.

However, in the lead up to 2015 some unusual things were starting to happen. My period was becoming quite heavy and there were crazy clots occurring. I thought it may be just a symptom of getting older and so did not think much of it. However, throughout 2015 things were getting unbearable and my cycle started to affect my work. I would have to take sick days as the flooding was unpredictable and, being a teacher, it wasn’t something that could be easily managed at work.

I started investigations with my doctor who sent me in for a D&C while awaiting results from tests. After the D&C the flooding was still occurring to the point that I was taken to hospital as it became out of control. While there it was suspected that I may have some cervical abnormalities and I was told it was possibly CIN 3. I got booked in for a Lletz procedure – however this was unsuccessful and further investigations needed to take place. I was then booked in for a cone biopsy. As I went into theatre the doctor assured me that everything would be ok – that this would be a simple procedure it would be over and done with quickly.

About a week after the procedure I was called in to meet with the doctor that had conducted the cone biopsy. I wasn’t expecting anything to be wrong and so did not bring any support with me. As I went into the room I could tell things were not ok. The doctor explained that when he went in to do the biopsy he was shocked as it was painfully clear that I had cervical cancer. He said I would need to undergo treatment as soon as possible but that my chances were good. I went home shocked but determined I would be able to beat this thing. I was informed I had Stage 2B cervical cancer and that the prognosis was positive.

I began treatment at the end of 2015 which was a combination of radiation daily for 6 weeks and chemotherapy once a week for 6 weeks – an operation would not be suitable as there were no clear margins. I then had brachytherapy. The day I left hospital after brachytherapy I was so relieved. I felt that I could start my life again and that cancer would never have a hold on me again. I went back to work and lived my life as I had before.

Then, in September 2018 my husband and I went to Greece to celebrate our 20th wedding anniversary. While there I started to feel nauseated whenever I ate anything. This was annoying as who wants to be sick when in Greece!!!! We thought perhaps I had contracted a bug. The nausea continued once we got home to the point that I could barely eat or drink anything without extreme nausea leading to vomiting. My local doctors were investigating all possibilities of what it could be (food allergies, intolerances, etc) and I was on the waiting list for scopes in the public system. I went to emergency many times and was always sent away because “I wasn’t sick enough”.

This made me angry as I was starving but I think they felt it was all in my head. My doctor was getting frustrated too and sent me for an ultrasound while waiting for the scopes. The ultrasound was abnormal and showed a growth near the intestine which needed further investigation with a CT. I rushed to a follow up CT scan which came back showing nothing of note. I was getting angry and frustrated as I was losing so much energy being unable to eat. Then on New Year’s Eve I collapsed in my doctor’s surgery. My hands were spasming and I could not hold myself up. On the way to the hospital the ambos noticed that my heart was showing some issues and I was taken immediately to ER’s acute care. Apparently my heart had started to fail due to my potassium levels being basically non-existent. The team stabilised me with 5 bags of potassium through my veins to get me to a just under normal level. This was so painful as potassium burns as it goes through, but it was a necessary evil to keep me alive.

Once I was stabilised the team began further investigations as to what was causing this issue. Finally I felt like I was being taken seriously by the hospital team! Through CT scans they found that there was a mass pushing against my intestine causing the contents of my stomach to not be able to pass through into the intestine. So to try and drain this they had to give me a gastric tube through my nose (so painful). Unfortunately when they did this there was a rush of gunk straight out of the tube AND vomit at the same time – GROSS! We did have a laugh though as it was New Year’s after all and it’s not a real New Year’s until someone vomits!!!! I was then admitted to hospital.

I was in the public ward on my own when my doctor came to see me and told me I had cancer again!! The wind was taken out of me. My husband and I had thought that perhaps this blockage was a simple thing that could be cut out and I would go on my way – but we were clearly mistaken. While I was shocked I felt strong and thought to myself “I beat it once I will do it again”.

Then on the 10th January 2019 I was told I had incurable Stage 4B cervical cancer and that I had 1 -2 years left to live. My previous cervical cancer had metastasized to the lymph nodes near my intestine and had pushed the opening from my stomach to the intestine shut. I went into shock. It was really strange as it seemed so unbelievable. I mean how could I not be there for my kid’s weddings? How could it happen that I would not be growing old with my husband whom I adore? I had plans with my best friend to run along a public beach into the ocean naked when we turned 70 and hoped to get arrested in the process!!!!! It didn’t seem right, it was such a bizarre, surreal time. I went into a place of weird calm where I felt that this was not really happening to me. I also had this strange feeling of privilege and freedom that I would be able to live the time I had left on my own terms – I think this was denial!

The most difficult part of this time was my husband and I having to tell our children. My daughter (19 at the time) had been overseas with her boyfriend so we waited for her return to tell both her and our son (14 at the time) what was happening. We took them to a quiet place in the hospital and told them the truth – Stage 4B – not much time left. We talked about how there were going to be really hard times ahead, that we would all have our moments of losing it – but that we would also make the most of our time left together doing as much as possible for as long as we could. We would all be in it together and that we would get through. That I would fight hard and hopefully get 5 years! And then we sobbed. We cried so many tears together that afternoon, embracing each other while facing the unfathomable. And then we stood up and faced it together.

I have to say my kids are the most amazing people. They are so strong, resilient and grounded. They are my world. And my husband – well he is my rock and my centre. We were in this together.

After this I began the long journey of treatment. I still had the gastric tube draining contents from my stomach (this took a long time) and also a feeding tube weaved through my nose, past the stomach into the intestine so that my body had some nutrition. I honestly was skin on bones at this stage! Treatment started with 10 rounds of radiation to shrink the tumour enough so that I could eat. It was such a relief to be able to eat again – working my way up from liquids to solids – what a challenge. Once I was able to eat I was released from hospital. It was the 31st January 2019 and I was so happy to be out – I had been in for a month.

We then began chemo which was a 6-7 hour process of three different types of chemo once every 3 weeks. I had a few hospital admissions during this time due to pain which sucked. But there were some good times too – like when my sister visited from Sydney and did my nails, my husband sneaking me out to see our dogs on the hospital grounds, and many, many, games of monopoly deal with the kids!! I was also snuck out for my birthday. We had organised a party with a big group of friends. The palliative care docs dosed me up with a massive cocktail of drugs so that I could go – and I got myself all dressed up (with makeup and a wig – as I was bald by then) and enjoyed the night ( I think – I don’t remember much of it as I was so drugged!!!). My husband and I renewed our vows that night (much to the surprise of our friends) and I snuck a little piece of cake (against doctor’s orders not to eat or drink anything) which was a little naughty.

When I was not in hospital we tried to make the most of our time together taking weekends away to places such as Lady Elliot Island and ticking off things on my bucket list like holding a baby croc and seeing the whales. But it was hard. SOOOOOO hard. I found that counselling didn’t work.  Nobody was or had been through what I had – so how could they help? I scoured the internet for stories of hope from people who had been at my stage and type of cancer (there were not many) and read so many articles on the statistics around survival (5/100 survive 5 years).

I don’t think I would have got through if it weren’t for the love of my little family but also the organisation Karuna (a palliative care group). One of the buddhist nuns from Karuna – Trinla- was invaluable to me. She helped me to meditate and work through the grief which comes with facing death. It didn’t make the grief go away – but it helped so much. I would often go between feeling that I was going to beat this thing (I was going to be one of the 5 who survive!!) to preparing for death. Such a weird headspace to be in.

After undergoing chemo for a while my oncologist said that he noticed that the cancer was stabilising. We then were told after the next scan that no cancer was evident and that I might like to think about heading back to work. Then the following scan said the same and my tumour markers were right down – I was officially in remission!!! What!!!! It was a miracle!! You would think that I would be happy – man I was ecstatic but I was also terrified. What if it came back? What should I do with my life now? Was this real? After preparing yourself to die – it’s bloody hard to shift your mindset to one of survival. It was just crazy. And the oncologists could not tell me what to expect as they said “we don’t see this happen”. I’m an anomaly!

I started back at work this year (2020) part time, building up to be full time again – but I battle anxiety and grief each day. I am anxious about the future and grieve the year that was lost – but I also celebrate the growth I have had as a person. The lessons I have learned are to try to live in the present as much as you can, don’t wait until you are sick to do the things on your bucket list (it’s too hard and you can’t travel overseas due to insurance) and make health and your family your number one priority – everything else can wait.

I continue to hope that I will remain in remission and that there will one day be a cure for this awful disease. I don’t ever want to go back to where I was ever again. I am 44. I want to live a long time yet.

My tips for Australian women about cervical health

Get abnormal screening results followed up!