Choosing my treatment path (Part 1)

June 16, 2018

From the moment I got diagnosed, it felt like I had been thrown onto a conveyor belt. I knew roughly what to expect on this conveyor belt, but the more times I heard that word ‘standard’ the more I wished I could jump off. In my experience, the only problem with jumping off this conveyor belt of modern cancer treatment, is that the alternative path is so unclear and lonely, not to mention expensive. I know this because I did jump off for a while. I remember thinking, no one should ever be placed in this situation, where you need to choose between a potentially life-threatening treatment (which offers no guarantees, just marginally improved statistics) or walking away and being left completely on your own. Imagine having to shoulder the burden of choosing your own treatment path then having to look your family and friends in the eyes if it doesn’t work, and having to say ‘I’m sorry’ as well as saying goodbye. You wouldn’t wish it upon your worst enemy. 

 

On the alternative path you mostly walk alone. Most people are so afraid to make any promises when it comes to cancer treatment. The fear that has been instilled in us surrounding this disease, makes this conveyor belt of surgery, chemotherapy and radiotherapy seem like the ‘safe’ choice because it’s the standard recommended treatment. It’s the path of least resistance and out of pocket expenses. How ironic is this? Cutting off body parts, nuking your entire body with cytotoxic drugs then burning it with potentially cancer causing radiotherapy becomes the preferred option because there is no searching - the path is presented for you as the path that's most widely accepted.

 

The topic of this blog post is the treatment path through which I ended up meandering. I asked a lot of questions on both sides of the camp, mainstream and alternative practitioners. But at the end of the day, I tried to feel my way through, figuring out what best resonates with me, as no one knows my body the way I do, and more importantly, no one wants me to live more than I do. 

 

I don’t have any qualifications in healthcare nor is my aim to promote any alternative treatments. This is purely a descriptive post of what I experienced as I navigated through this scary disease, relying mostly on my own intuition and faith to guide me along the right path for me, as I believe it’s different for everybody. When we find ourselves in such a situation where our life is on the line, we quickly realise we have a lot more to draw on than just learned knowledge. My schooling was irrelevant in this case, but there’s an innate wisdom or intuition that can serve as a guide on what’s best for us. Learning to trust it is often the real challenge. 

 

To help you understand why I jumped on and off the conveyor belt of conventional treatment, let’s go back to the beginning of the story, while I was still on it. 

 

When you first get presented with your biopsy results, you’re also given a description of your cancer and it’s ‘aggressiveness’. That word gets mentioned a lot in fact, as if trying to evoke a battle mode. It’s us versus the cancer, so you form an alliance with your doctor and together you take on your OWN body. Somehow we forget that it’s still us on the other side. 

 

Can you imagine the fear and restlessness when you’re presented with such a scenario, where there’s an invisible aggressor within you?

 

As I kept hearing about my highly aggressive cancer, the day of my surgery couldn’t come soon enough. I felt like a ticking time bomb, like my body was in self destruct mode. But here’s the crazy part - I had zero symptoms. Besides the lump, I looked and felt perfectly healthy, yet based on the picture that had been painted for me, I couldn’t wait to get rid of this aggressor, even if it meant cutting off a perfectly functioning body part. Never mind it was still being used to breastfeed my child. 

 

All logic seemed to go out the window as this sense of urgency and panic was created within me. 

 

Can you imagine having that kind of relationship with your own body? Thinking it’s trying to kill itself from the inside. That’s exactly how the cancer was presented to me as the patient. This sense of urgency and panic was created, which practically sent me running towards that conveyor belt and at first I couldn’t wait to jump on, in order to take on the mostly invisible aggressor. Can you imagine the level of fear that has to be instilled in a person in order to send them sprinting towards the operating theatre to have a perfectly functioning body part cut off?  

 

The very next day after getting diagnosed with cancer, I spent a full day in hospital getting scanned to determine the extent of its spread. I arrived at 8am to a waiting room which was already full. A nurse came out with a clipboard with pages and pages of paperwork for me to sign, agreeing to the risks of the tests they were about to perform. She then came out with a bottle of water for me to drink and hold in my bladder. Every few minutes she came out with the same instructions for the next person. When the staff spoke among themselves, they referred to us patients according to our appointment times, ‘that’s the 8:30am sitting over there, she’s already had her drink’.  Why not just stamp my forehead with 8:30am so it’s easier to recognise me? Clearly I was a little bit bitter already. Perhaps it was just one of the stages of the grieving process - anger. 

 

This was only the first day, and the conveyor belt was already beginning to show itself. My husband tried to calm me down by explaining the necessity to streamline things in such a large healthcare system. It needs to be efficient to handle large volumes of patients. We got herded from one waiting room of the hospital to another, with different scanning machines in different areas. I tried to focus on the positives, like being grateful for the fact that I live in a first world country which has a healthcare system that can afford all of the expensive machines.  

 

Once the doctor determined the spread was fairly localised, the next step was surgery. This happened just a few days later. Once again I decided to focus on the positives, being grateful for the healthcare system and having access to timely treatment. 

 

That week in hospital was my first time away from my kids, so once again I tried to put a positive spin on things by celebrating uninterrupted sleep for the first time in many years. I think it was the only way to stay sane in that situation. Thinking about my 18 month old girl, who had been breastfed to sleep up until that point, and what my husband was most likely dealing with back at home, was too unbearable to think about. Not because I pitied him, but her. It was bad enough I had to wean her so suddenly, but then I disappeared a few days later. 

 

She did come to visit me in hospital once, on the second or third day, but she just cried because she wanted me to hold her. I was still in bed with tubes draining my wound and movement in my right arm was quite restricted. During that visit we both just ended up crying because I couldn’t hold her, so we decided it’s probably best for everyone that she doesn’t visit me in hospital anymore. 

 

That was actually one of the hardest parts, the physical pain when trying to hug my own children. In the weeks (if not months) following my surgery there were quite a few situations where one or both of my kids ran in for a hug, and I just screamed out in pain. This must have traumatised them because then they learnt to hold back. That was heartbreaking and even now makes me cry just thinking back to those days. I remember my son, who was four at the time, would sprint towards me at the door then freeze when he’s about a metre away from me and ask which side of me he’s allowed to hug. I would point to my left then he would lean in for one of those awkward hugs you see between people who are really uncomfortable with physical affection, as he tried carefully not to hurt me again. Meanwhile, my 18 month old daughter just retreated and stopped running in for hugs altogether. Those days were so heartbreaking. I remember thinking - how is this an accepted path to healing? It just seemed so barbaric to me. 

 

Believe it or not, that was relatively easy in comparison to the next part of the journey - the prospect of chemotherapy. 

 

The stock standard approach is to give the patient approximately six weeks to recover from surgery before beginning chemotherapy. During this time, you farewell your surgeon as you’re given a referral to meet with an oncologist to discuss the next phase of the treatment.

 

The first oncologist I met practiced in a few different hospitals. On this particular day, the conveyor belt must have been moving a little too fast for him, as he wasn’t quite ready when I came along. He didn’t have any of my paperwork from the surgeon so the poor girl at reception had to quickly gather it all, while I was already in his office. 

 

Before I got diagnosed with cancer, my limited knowledge of cancer treatment went something like this. Some people get cancer, then they have chemotherapy as the standard treatment and most of them live. An unlucky few get secondary cancer, which is a lot harder to treat and the survival rates are lower. I thought radiotherapy was just to shrink tumours. That was honestly the extent of my knowledge pre diagnosis. Oh and I also remembered seeing posters of ‘chemo kills’ paraded in different places. This created a bit of confusion on some level, but it was all subtle, I didn’t think I would ever need to worry about such things.  

 

Once he had my referral in his hand, the oncologist was able to present me with the ‘standard’ chemotherapy treatment protocol for someone with my cancer type. However the first thing he said to me was ‘congratulations, your cancer is in a bucket’ (implying the surgery took care of it). He then went on to explain that on the off chance that the surgery didn’t remove ALL of the cancerous cells from my body, chemotherapy was recommended as an insurance policy. I was presented with three different options, although that’s technically not true because the first two drugs had a negligible effect on survival rates. So the obvious choice was the third generation chemo (ie the harshest of the three) as it’s the only one which changed the numbers - slightly. 

 

He entered all my details into a computer program which spat out the statistics for the different types of chemo drugs and survival rates at 5 and 10 year marks. I won’t bore you with all the stats, just give you the main figures.

 

Given my age and cancer type, statistics show there’s a 60% chance I’ll still be alive and cancer free in ten years time - that’s without any treatment. 

 

The first two drugs on offer, barely made a dint in the percentages and the oncologist was very quick to dismiss them, leading us straight to the final option - third generation chemo, made up of several different drug types.

 

If I accept the recommended chemotherapy drugs, my chances of being alive and cancer free at the ten year mark increase to 71%. In the grand scheme of things, when taking into consideration the extremely long list of very serious side effects (including neuropathy / nerve damage, heart damage, induced menopause just to name a few), that 11% increase really came at a high price, especially if it was just an insurance policy. Yet it was still nowhere near the 90s, where my survival was almost guaranteed. 

 

If chemotherapy is just an insurance policy against possible stray cells left behind after surgery, surely there was a way to test for those? Surely you wouldn’t subject someone to such a harsh treatment without being absolutely certain there’s a need for it? The response I got from the oncologist sent shivers down my spine, and in that moment I began steering clear of the chemo train. He said to us ‘there’s no way of knowing if there are cancer cells in your body, that’s why we have to give you the chemo. We are basically blind when it comes to this disease.’

 

My husband and I were both in shock. We both mistakenly assumed that chemotherapy had much better outcomes, however in this case apparently not. 

 

I remember thinking - what do we know about that first group of women who survived even without any treatment? What did they do differently, when compared with the ones who died? I knew I needed to find out the answers to these questions if I wanted to improve my chances of survival, because chemotherapy alone wouldn’t do that for me. 

 

As this blog post is already quite long, I’ve decided to separate it into two parts. 

 

I’ve described the first part of my journey after the initial diagnosis, the part where I followed the conventional cancer treatment path for a while. I had surgery then met with the first oncologist who burst my naive bubble about chemotherapy. 

 

The following six weeks, between my surgery and the scheduled commencement of chemotherapy were the most difficult of my life, up until that point. Having the scales symbol as my star-sign really didn’t help me. To chemo or not to chemo? If not, then where to from here? The emotional rollercoaster was just getting started. 

 

After weeks of internal turmoil, I finally decided to cancel my first chemo appointment. It was the hardest decision I ever had to make. In the next post I’ll write about how my cancer grew back just weeks after my surgery, how difficult it was to steer clear of the chemo train and how I reluctantly ended up in that chemo chair, via a trip to Latvia. 

 

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