This is my story

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My name is Raquel Neilson.  I am 36 years old.  I am married to a wonderful human, Gareth and together we have two daughters, Sienna (5yrs) and Alexia (6months).  This is my cancer story so far and I share it openly in the hope that it will help, guide or encourage someone in the future.

 

The diagnosis

When I was in my third trimester of my second pregnancy I noticed a lump in my left breast, I mentioned it to my gynae at one of my prenatal appointments.  She examined me, asked if it was painful which I replied “yes”, she proceeded to say that its unlikely to be cancer as cancerous lumps are not painful and my body is preparing to breastfeed and its likely a blocked milk duct.  This was in October 2020.  Fast forward to the festive season, the lump was now MUCH bigger and it hadn’t gone away with breastfeeding, I wasn’t convinced it was a blocked milk duct.  In the first week of the new year, I booked to see my GP (5TH January 2021) who sent me for an ultrasound.  I went that very afternoon, only to be told by the doctor who did the ultrasound that the lump was a complex cyst and nothing ominous.  This was a doctor NOT a technician.  I left feeling relieved and jolly and didn’t give it anymore thought.  

 

The next day my GP called saying he had the ultrasound results and wanted me to see a specialist, Prof Carol Benn.  My GP, Dr Phillip Van der Merwe, has been my family doctor for years and he generally errs on the side of caution and I thought him requesting me to see a specialist was him being ultra-cautious.  Still not worried, I thought I was going to see Prof Benn to determine if we needed to surgically remove the cyst.  In my mind worst case scenario, I needed to have the cyst removed asap which would mean having to stop breastfeeding my three-month-old baby… best case scenario, I could have the cyst removed at a later stage.  Because I wasn’t concerned, I didn’t make the appointment immediately (especially since the doctor, who did the scan, said it wasn’t cancer).  

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A week later on Thursday 14th January 2021 at 18:00 I found myself alone (Thanks to Covid) at Prof Benn, after examining me she explained that the only way to know for sure what we were dealing with was to have a core needle biopsy, next she was on her cell phone “Hi, I have a young mommy here, who urgently needs a biopsy”.  I recall thinking to myself while I was getting dressed.. “I do? I need an urgent biopsy?”.  I didn’t realize it was urgent.  Prof Benn reassured me that whatever it was we could manage it and that she wanted to see me Monday afternoon once she had the results.  I was given reading material on tumours, both benign and cancerous and how diagnosing them correctly is important.  Still not worried (perhaps because when I was 20, I had two fibroedeanaems basically benign lumps in my other breast).

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I was told to be at the Parklane the next morning at 7am for the biopsy.  The biopsy was a little more than what I had expected and landed up having both the lump biopsied and my lymph node as the ultrasound showed enlarged lymph nodes.  This was the first time the thought that this may be cancer crossed my mind.  But I quickly reminded myself that I was young, had no family history and I felt great.  On Monday the 18th of January 2021 I was back at Prof Benn to get the results.  I had been called earlier in the day to confirm my appointment and I remember thinking, surely if it was cancer, they would have told me to bring hubby along.  There I was again, this time not alone, I had Alexia with me as she was breastfeeding and to avoid the drama that unfolded at home during my last appointment (where Alexia refused the bottle of expressed milk) so there I was, still a surreal memory, holding my three-month-old being told I have cancer (triple negative breast cancer).

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Prof Benn introduced me to a navigator, she helped me unpack what I had just been told.  A few hours had passed and hubby had phoned a few times, as I got in the car I answered his call, I had planned to remain calm and tell him once home but I as he asked me what doc had said, I burst into tears.. “Love it’s not good news, I have cancer”.  I pulled myself together and drove home.  

 

The treatment plan

The days following immediately after the diagnosis were the toughest for me, it was the shock, it was feeling totally consumed by “I HAVE CANCER” and a multitude of doctors’ appointments, scans and procedures.  It was so overwhelming.  The very next day after being diagnosed, I met with my oncologist, Prof Rapoport, in my mind I would start chemo in the following month and I was caught off guard when he said, see you next week!  It was confirmed that I would undergo six TAC chemotherapy infusions, followed by a lumpectomy and then radiation.  I have uncooperative veins and it’s always been a struggle to locate for blood tests or drips, so before chemo started, I went in for a quick procedure to have a port inserted, at first not the most comfortable accessory to rock, I am very grateful that I got it.  

 

Chemotherapy

Starting this journey, I naively thought that chemotherapy was one drug, it made your hair fall out and made you really sick, pretty much what you see in the movies.  I have come to learn that this isn’t exactly the case, there is a multitude of medicines that make up chemotherapy and only some make your hair fall out…  

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The “A” drug in the TAC combination I was going to be given is red and known as the red devil and yes it makes your hair fall out.  There are many other side effects to chemotherapy and everyone reacts differently.  After my first infusion, I thought, okay now I know what side effects I’m going to suffer with… surprise… nope!!  For me each infusion I reacted differently. Unlike the movies you are not sick for the entire duration of treatment, for me I was man down for 4 days post chemo and slowly I would come out of what I called the fog and a week later I was back to my almost normal self. A few special people shared their experiences with me and it gave me somewhat an idea of what I was in for, but chemo is a beast and it was tougher than I had ever anticipated.

 

Family and friends’ support  

I am one blessed girl, I have had the most incredible amount of support and love. On the days I didn’t have the strength, sense of humour and energy my family and friends had it for me. I will forever be grateful for the gestures of kindness, love and support. I wish I had the words to express how grateful I am for all your support and how much it has helped through this journey.  

 

The future

At first my tumour responded very well to chemo but the last two infusions made very little difference. My oncologist has had me have another biopsy to find out what is happening at a cellular level and I may possibly have to undergo more chemo. Thereafter I will have surgery, radiation and possibly oral chemo, so watch this space!!

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All my love

Raquel

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