ER24 founder and cancer survivor shares key lessons

Being in the business of getting sick people to hospital in the fastest possible time – and coming from a medical family – founder of emergency medical service, ER24, Andrew Boden knows how important timeous treatment is to patient outcomes. He also knows that there are very few places in the world where patients access treatment within days of diagnosis – the way they do in South Africa.

Diagnosis

Ten days after his cancer diagnosis (Adenocarcinoma of the colorectal region and Stage 4 pulmonary metastasis) he began the life-saving treatment accessible through his Remedi Medical Aid Scheme cover.

Andrew’s cancer journey – and he’s the first to concede that everybody’s journey is different – also saw him consciously focus on his work ethic. He meticulously planned his chemotherapies and radiation treatments around his business hours, using weekends to recover. For him, keeping things as normal as possible was part of the therapy. Andrew shares his story in his own words.

I had no real symptoms. They picked it up during a routine colonoscopy on July 23rd, 2015. That’s the day my world changed. Being diagnosed with colorectal cancer is one thing, but the double whammy was that I had Stage 4 metastases and it had spread to my lungs. In the first day or so I didn’t have time to think or process any of it. Between the doctors and Remedi, the wheels clicked into motion very fast. Within 24 hours of the colonoscopy I’d already seen a chemical oncologist and a radiation oncologist. Three days later I went back into hospital to have a port put into my chest and two days later I began my first treatment. I mean you take even the Canadian health system – one of the world’s better ones – and you wouldn’t go from diagnosis to treatment in that short a time. There are very few places in the world where this happens.

Taking it on the chin

My treatment initially consisted of chemo every two weeks and 28 daily sessions of radiation therapy – simultaneously. Together there’s apparently a multiplier effect. The radiation was on the primary tumour in the colorectal region.

Before my diagnosis I’d been leading a normal life, gym three or four days a week, playing golf, working hard. I made a decision from the outset that I’d continue to work normally. It was part of my sanity to carry on working. So, I’d have chemo on the Thursday, spend Friday at home and be back in the office on Monday. I booked all my radiation at weekday lunch times so I could work in the morning and return to the office. Luckily my wife is a nursing sister, so she would remove the chemo pump and flush the port in my chest around lunch time on Saturday. Then I’d be flat cat for the rest of Saturday and Sunday.

In the first weeks following my diagnosis I went through a whole gambit of emotions. For the first time I had to contemplate death. You have no feeling for when that might come. If things turn for the worse in spite of treatment, how long do I have? You don’t get a straight-up answer. Mentally my wife started to prepare our three sons, aged 16, 13 and 12 at the time, in line with her belief that in six months I’d be bed-bound and really sick.

Andrew’s wife Carryn: For us the whole thing was to be really honest with our boys and with hindsight, that was the correct thing to do. We prepared for the worst and hoped for the best. We’ve never hidden anything from them. The boys were scared. It was awful. Our youngest would escape to be with friends when he saw Andy man-down. The older ones are an incredible support to us both.

Andrew resumes: Luckily, I’m the sort of person who looks forward and not backwards. I decided to make everything part of my everyday life. There were some really tough days, particularly when I was on dual therapy. I had to change a few things to be able to operate. The radiation affects your colon and my stomach would become unpredictable. So, I’d make sure I missed traffic rush hour. I was also nauseous and had hyper-sensitivity to cold – not great in a Joburg winter. I developed an altered sensation in my hands and feet from the chemo – pins and needles, hypersensitivity to temperature and a major impact on balance. This resulted in developing a strange way of walking (shuffling). Whilst the shuffling has gone, the neuropathy in the hands and feet remain – you learn to manage, but fine motor work remains challenging.

Financial and admin support –stellar

When it comes to finances, my Comprehensive Option on Remedi paid for virtually everything. The oncology programme kicked in and authorised every treatment. In my second year of treatment I had to contribute to 20% of some of the medical costs, because the biological chemotherapy I was on was very expensive and pushed my spend over the annual limit. Information, support and updates regarding authorisations were very good and all queries were followed up promptly.

As for the processing of claims there was this unbelievable guy, Thuso, at the Remedi call centre who made a huge difference to our admin. He was on top of all claims and advised when co-payments were due.

After my first six months of treatment I went onto oral chemotherapy and in June last year had surgery to have the primary tumour area of the colon removed. Upon resection it was found that the radiation had obliterated the tumour and there were no signs of it at all. It’s the old debate – chemo first or surgery first? The colon tumour was originally so big they couldn’t get the scope past it; it was 75% occluded (blocked). Now it’s completely clear. The only downside is that radiation causes the body to heal differently and I had fluid under the skin near the incision, which took about two months to resolve. Now I have a fairly significant incisional hernia which leaves the centre line of my abdominal muscle lying open. I wear a corset which is slightly uncomfortable and not that aesthetically pleasing.

My lungs initially responded quite well to the biological treatment however scans showed some activity on the lesions on my lungs. As a result I have had a course of Steriotactic Radiosurgery – highly focussed radiation therapy to the lung lesions, and am about to start another course of chemo. So the current status is that there remains activity in the lung lesions, however, the balance of the body is clear of disease. This is continuously monitored with blood tests and frequent scans.

Preparing for the long haul

Emotionally, it’s been a roller coaster. Everyone needs to realise that once this process starts it’s a marathon and not a sprint. You have to prepare yourself for the long haul – and be grateful that it is a long-haul – many are not that fortunate!

Two things have kept me from drifting towards thoughts of death and dying. The first is faith. As a family, we have deep Christian faith. You understand that there’s nothing you can do. There’s an orchestra playing but you’re not the conductor. Yes, you have a role to play, but you’re only one of the people on the stage. As a family, we feed off each other to stay positive. The other thing is that I don’t look sick. I appreciate that. All the treatment had a limited effect on my appearance. Losing all my hair with a recent treatment raised some emotions in me, especially when big clumps came out in my towel after showering. After a period of looking like an “eaglet” it recovered quite quickly. I didn’t lose my eyebrows and lashes fortunately.

I’d like to see a dietician included in a more holistic oncology package. Diet and exercise are two very important areas that are generally not dealt with by the oncologists but that have a significant impact on your ability to handle the treatment regime, withstand potential infections and generally feel better about yourself.

The support from friends and family has been amazing and the way the community responded in the early days was unbelievable – meals delivered daily for more than a month! Colleagues at both Mediclinic and ER24 have been very understanding and supportive on the journey. So I am positive, starting a new treatment and forging ahead.

This disease changes your life completely, not just physically and emotionally but fundamentally in your outlook and an acute understanding of what’s really important – people, relationship and experience. Forget about the neuropathy in the hands and feet, the big abdominal hernia and other long-term effects of chemo and focus on quality time and experience with those who matter. There are so many who have things much worse than you – remain grateful and most of all stay positive.