What is Chemotherapy?:

Chemotherapy is where medicine is used to kill cancer cells. They stop cancer cells from reproducing, which prevents them from growing and spreading in the body. Epirubicin and Cyclophosphamide, aka E C, are the chemotherapy drugs being used for (my) treatment. This is the best combination to fight the invasive DCIS breast cancer that I had. These chemotherapy drugs destroy quickly dividing cells, such as cancer cells.

Tests Before Starting Chemo:

There were a number of tests that had to be carried out before starting chemotherapy. There were various blood tests done by the phlebotomist, doctors and nurses to ensure I was ready and able to start chemotherapy.

My medical history was carefully scrutinised and a thousand questions were asked before I became certified for chemo administration.

I had a chemo session every twenty-one (21) days once the process began before every new hit, a blood test was done to ensure my body was back at a safe level to take another hit.

Preservation of Eggs:

One very important aspect of my life that I always talked about with the Oncology Team and doctors was that I would very much like to be able to have a family one day, once I’d overcome the obstacles ahead of me.

Before being referred to fertility, I had an in-depth conversation with one of the Oncology doctors, Dr Harris (also recently retired) and she advised that the most important thing at that very moment was to do everything I could to ensure my survival from DCIS. She advised that once I’d beaten this, there would be various options to having a family and I should not lose focus of the battle ahead of me.

In my consultation with the fertility specialist, we discussed my various options but because of how aggressive this DCIS was, I needed to start chemotherapy as soon as possible. This meant that whatever options I may have opted for, i.e. harvesting and preservation of my eggs or an embryo would have taken some time, the time I didn’t have.

Now lots of women can still have a family after chemotherapy but the question was would I be one of those women? 

So keeping this and all that I had read in mind, I decided to start chemo and win this battle first, then fight for a family when the time was right. I started chemo a few days later.

First Day of Chemo Prep:

I arrived at Guy’s Hospital in London Bridge with my UK mum for the first day of chemotherapy and the first day of the rest of my suddenly changed life. The preliminary checks were done, such as name, date of birth, address, blood pressure, weight, height and so on.

A chemo nurse inserted a cannula, which in my case was to a large vein on my left arm then flushed through with saline – then I was ready for the first administration.

By the time the above task was completed my UK mum had started crying and panicking, so my assigned chemo nurse and I had to assure her all was going to be fine then quickly guided her into a different room. She was invited back once the chemo treatment started.

I was then given some anti-sickness tablets. I had opted to wear the “Cold Cap”, which needed to be on my head for forty (40) mins before the chemo fluid was inserted into the cannula. Forty (40) minutes after the session. The process of trying to save the hair on my head was started.

The Cold Cap:

Cold caps and scalp cooling systems are tightly fitting, strap on, helmet type hats filled with a gel coolant that’s chilled to between -15 to -40 degrees Fahrenheit. 

The cooling systems work by narrowing the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles. These caps may help some people keep some or quite a bit of their hair during chemotherapy.

Despite having used the cold cap from the first session of chemo, my hair started falling out from the third (3) round of chemo, so I decided to stop using it and by the time round seven (7) was administered I was completely bald. The cold cap didn’t work for me, but it was good that I got to try it.

First Round of Chemo:

The chemo mixture was prepared a few minutes before administration and was brought out by a specialist chemo nurse who reconfirmed my identification with their system before putting the printed tag on my wrist. I looked at the chemo fluid and noticed it was red in colour, which reminded me of a cocktail. I don’t know why, but I decided right there that I would call my sessions ‘cocktail sessions.’ The chemo nurse sat with me for the first twenty (20) minutes of the first session then left, informing me to let her know if anything happened that was not normal.

I sat on a very comfortable chemo sofa that reclined, with the option to put my feet up. Everyone having treatment was encouraged to stay hydrated and I was permitted food if desired. I always had plenty of hot water because I had opted for the cold cap, which painfully numbs the head and the chemo fluid was also quite cold. I was also offered blankets and made to feel very comfortable.

First Chemo Jan 2017
First Chemo Jan 2017

I watched as the red fluid flow down through the tube and through the cannula into my veins. I prayed so hard that all the discomfort I was going to experience in the next few weeks and months would please, please work on the invader inside my right breast.

Three hours later, the first session was over. I was given some more anti-sickness meds and steroid tablets for the next three days. I had already been given Guy’s Chemotherapy Unit’s emergency details should anything happen while I was at home. There was always a doctor at hand and a message could be sent to the oncology team if need be.

Back home that evening, while trying to force down some dinner, I noticed that my taste buds had become somewhat bland. Everything that went into my mouth had very little taste.

My first night’s sleep wasn’t very good either, I was sweating a lot and there was a stench oozing out of my sweat. 

The day after was a little strange because I stayed home and assessed my body. I had to take my temperature in the mornings, afternoons and nights. I had been given the danger zone temperatures. I couldn’t be around anyone with a cold or flu. I was also advised to stay clear of children and was cautioned not to use public transport during the rush hour.

After the first chemo administration, I spent a few days with my brother and his family who have two children, so keeping clear of children as instructed was a little hard, but we managed.

My First (1st) & Second (2nd) Rounds of Chemo:

These were quite similar and the only thing that changed on a daily basis was my taste buds. Eating became a little difficult so I started eating from memory. Every time I put anything into my mouth I would chew, remembering how it tasted and that sort of worked. I made sure I ate breakfast, lunch and supper because I had to and not because I was hungry. I literally force-fed myself.

Third (3rd) Round of Chemo:

A week after the third round of chemo I started to notice some huge changes in my body. The nails on both my hands and toes had started to go dark (nerve damage) and they had also started to tingle; they sometimes hurt and other times felt completely numb. 

The taste in my mouth was bitter, metallic and acidic all at the same time. My tolerance for peppery hot food had always been quite low for an African, but if it wasn’t hot and peppery I couldn’t eat it by my third hit of chemo.

I had put my hair in cornrows and while undoing these to wash my hair, some sections came off in lumps like cotton buds. My very pale, balding scalp was also very sensitive to the touch. My once very full pair of eyebrows started to thin and my lashes started to fall out and this was the same for the rest of my bodily hair.

The one thing that was brought up a lot during discussions with the oncologists and doctors was fatigue and extreme tiredness. In my case, I was still going for my early morning runs without any problems and feeling great afterwards, despite the numbness to my toes.

Fourth (4th) & Fifth (5th) Rounds of Chemo:

A few days after my fourth round of cocktails, I developed a sore throat and my temperature spiked to the danger zone. I remember feeling like I was having an out of body experience and just floating, but staring down at myself.

My head pounded like there was a little man inside hammering away, my vision was blurry and I found it hard to focus. My throat was so sore I couldn’t swallow my own saliva, so eating was out of the question.

Normal everyday sounds were really loud and I jumped every time a door was shut or if anyone spoke to me. At one point, I was crouched on the floor in a corner in the foetal position. 

We made it to the hospital and it turned out I had developed a sore throat and “neutropenia sepsis”. This is where a patient with a low level of neutrophils gets an infection that they can’t fight off, so they become septic. When this happens urgent medical treatment is needed. Neutrophils are a type of white blood cell that works as part of the immune system to fight off infections. Chemotherapy treatment can cause neutropenia which makes the body less able to fight off infections. I was admitted after a blood test. A cannula was inserted with the treatment to help increase my Neutrophils count and help fight the sore throat. I was discharged three days later with more meds for five more days.

The hair loss continued all over my entire body. The sensitivity of the skin around my hands and feet progressed, the pain and numbness became more intense. The sweating continued and so did this toxic smell oozing out of my sweat.

After my fifth round of chemo, I woke up one morning to brush my teeth and noticed that my tongue had turned purple. None of the literature I had been given to read nor anything online made any mention of purple tongues during chemo.

I called the chemo clinic at Guy’s Hospital and a message was sent to the oncology team of this new development. Within an hour a doctor called and asked a few questions about my tongue. If it was sore, bleeding or irritated at all? The answer was ‘no’ to all of the above. I was told that this happens to a very low minority of people during chemo and not to stress myself out and that it would return back to normal, as would all my other symptoms.

I went online and discovered that Black or Hairy Tongue as it’s known, is a yeast type of fungal infection similar to oral thrush but not so common. It’s caused mostly by the chemo antibiotics wiping out my “good” bacteria and not having a high enough white cell count to keep it at bay.

The acidity level of my taste buds had become intolerable, so I had started blending my food in a processor and just drank my meals. One of the chemo nurses suggested I started eating more pineapples because it would help to reduce the level of acidity on the tongue, so naturally, I tried it. My verdict?. It helped a little.

My sense of smell became extraordinary; I could smell everything. Everything with an odour became intolerable. A lot of everyday smells made me want to throw up, even the smell of one of my favourite foods, plantain.

I had started the Herceptin injections now and found I couldn’t go running anymore as I became breathless after a few minutes into my runs – so I would walk the route. I still met up with friends during the day and continued spending weekends with my nearest and dearest.

What Is Trastuzumab Or Herceptin?:

Trastuzumab is a monoclonal antibody – a targeted treatment. It has the brand name Herceptin. It is used for cancers that have a large amount of protein called HER2 (human epidermal growth factor receptor 2). HER2 makes the cancer cells grow and divide. When Herceptin attaches to HER2, it can stop the cells from growing, so they die.

I had eighteen (18) Herceptin injections on alternated thighs every twenty-one (21) days.

It was very important to keep my stress level at the lowest, so I strived towards that every day. I had always practised yoga and had dabbled with meditation, so I decided to explore more on meditation and I found it worked very well for me.

Sixth (6) & Seventh (7) Rounds Of Chemo:

Just over a week after my sixth (6) round of cocktails, I had an appointment at the Guy’s Breast Clinic with my consultant Dr Ash Kothari. During that consultation, he noticed that my temperature was slightly high and I had also complained of a sore throat that seemed to be worsening. He encouraged me to pop into the chemo unit which was in the next building for a check-up, so I went.

On examination and after a rushed blood test I was admitted. I had developed “neutropenia” AGAIN!. Neutropenia is a concerning side effect of chemotherapy and is defined as a decreased number of neutrophils (a type of white blood cell) in the body. Neutrophils are the body’s main defence against bacteria and infections.

Once again, a cannula was inserted into a large vein on my left arm and the treatment started. Three days later I was discharged with more meds for the next five days. One of my girlfriends and a member of my support team brought a change of clothes, some toiletries and a few goodies over due to my impromptu admittance.

Second hospital admittance due to ‘neutropenia’ during Chemo 2017

Once home I noticed the skin on my face, hands and feet had become considerably darker. On my face, the skin around the left eye had become purple like I had been punched.

My eyebrows were literally hairless and my eyelashes were completely non-existent.

By the time I’d received the last round of cocktails, my entire body was completely hairless. My head had a few strands of hair, to which I took a pair of scissors and snipped off. There was quite a bit of body ache, especially around my joints and back.

The nerve damage on my hands and feet had gotten a lot worse and if one looked at my nails without any varnish, the skin underneath was black. The tingling and numbness got so much worse and I was highly uncomfortable in my own skin. I didn’t look like myself at all.

Out of all that I went through and endured, my taste buds was by far the worst thing EVER. By the last hit of chemo, every meal I consumed had to have hot, peppery sauce added and I was force-feeding due to lack of appetite. I ate only with the knowledge that my body needed the nutrients, hungry or not. I needed to nourish my temple, so I would force the liquid or food down and take my meds as prescribed by the oncology team.

Chemotherapy Ends:

End of Chemotherapy June 2017

I was administered seven (7) rounds of chemotherapy in total the first time around. This was the end of the first round of the battle before the surgeries and radiotherapy began.

Tamoxifen:

I started taking a drug called Tamoxifen the same day I had my first radiotherapy session and will be on it for the next five years.

What Is Tamoxifen?:

Tamoxifen is a hormonal therapy drug used to treat breast cancer. It’s occasionally used to treat some other cancers.

Many breast cancers rely on the hormone oestrogen to grow. This type of breast cancer is called oestrogen receptor-positive (ER-positive) breast cancer.

Tamoxifen blocks oestrogen from reaching the cancer cells. This means the cancer either grows more slowly or stops growing altogether.

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