No substitute…
At first, I thought it was a mistake. The recall letter inviting Sophia to attend a further examination looked exactly like the first. The information inside the distinctive NHS envelope was the same as before. Surely It was a duplicate, or so I thought. Until that moment Sophia – like the rest of her female colleagues – were receiving regular breast screenings at a private hospital paid for by her employer M&S. In January of that year, M&S decided to scrap the scheme as a cost saving exercise. Whether by chance, or by divine intervention, Sophia received her first mammogram with the NHS two months later.
But here we were. Two days and we’d be on our grand adventure, the one holiday we’d been looking forward to ever since it was booked. Four days in Vegas followed by a cruise down the California coast. Our suitcases were packed and ready to go. The only formality – or so it seemed – was to ensure the recall would be nothing more than a confirmation that all was well. After all, the nurse did say, if there was anything suspicious, the parting conversation would have been entirely different. This was after Sophia’s right breast was marked with coloured tabs and subsequent tissue removed for a biopsy – just to make sure.
48 hours later we arrived back to where it all began. We were promptly shown into the consultant’s room to be greeted by two doctors one of whom had the whitest hair I’d ever seen. Her South African accent cut through the tension with scalpel-like precision. “Mrs Charalambous, we have reviewed the results of your biopsy, and we have to tell you that you have breast cancer in the two areas of the breast that we have examined,” she said.
For the first time in my life, I was momentarily struck dumb with shock. Sophia immediately went to pieces. “What’s the prognosis?” I asked in total disbelief. The other doctor was quick to reassure. “We’ve found it very early, but Sophia will need a mastectomy as both legions are too close together. There has to be a sufficient margin of clearance to keep the remaining breast tissue, and we won’t be able to do that.”
No sooner had the shock passed when I was beset by a strange calm. Sophia was still very upset and couldn’t take it in. Nevertheless, my fighting response now kicked in. When offered several hospitals for Sophia’s treatment, I asked for the one place not on the list – the Royal Marsden. The white-haired doctor suggested it would be better to stay local due to the number of appointments and examinations Sophia would now require. Travelling to the outskirts of Surrey from Enfield to the Marsden would take nearly 2 hours – even on a good day. The white-haired doctor was right. At least my knowledge of getting across London was just as good as hers.
At this point you’ve probably realised I am writing this from my perspective and not Sophia’s. Yet it was Sophia who had to endure the ensuing weeks and months of surgery, chemo and radiotherapy, plus the uncertainty that came with it. That’s because it’s not very often one gets to read these stories from a partner’s perspective. Those in the know will tell you treatment for breast cancer has advanced much in recent years, but in no way am I able to suggest anything connected to a person’s treatment or outcome. I can, perhaps in the cathartic sense, share my own experience as vivid and as real though it were yesterday.
Following Sophia’s diagnosis, it seemed very much the subject matter was everywhere. Women – particularly those with media connections – were being diagnosed and making the news daily. Sadly, some of whom had lost their fight against the disease.
My own preconceptions on what we were dealing with were quickly trodden on by an abrupt nurse from Yorkshire who stated typically that one in three women could be diagnosed with the disease at any point in their life. Overnight, most of Sophia’s friends and family were seeking urgent appointments with their GPs to get mammograms. Another of my preconceptions was that there was a genetic link to the disease. Sophia has five sisters none of whom had ever been diagnosed so why her? Despite evidence of a genetic link that does affect some families – random cases of breast cancer are more common than not – even in men.
So how did I get through it? First up I contacted the excellent Breast Cancer Now helpline. I wanted to know everything about the disease that was now threatening to wreck Sophia’s life. I found out there are two main types of cancer: Invasive and Non-invasive. Left untreated Invasive cancer will spread beyond the breast into other parts of the body. Non-invasive cancer would remain where it is and grow continually but there is a risk of it becoming invasive. I also learnt there are three common variants one of which has the presence of certain a hormone – Herceptin – known simply as HP and as such, the cancer could be classified as either being HP Positive or HP Negative. This discovery is important as it could determine post therapy treatment. The third variant where no hormones are present is known simply as Triple Negative. Every patient and their respective circumstances are different. There are of course, other factors and other diseases linked with breast cancer I am not qualified to list here. But I did learn that Sophia was HP Negative with Stage 3 Invasive and Stage 2 Non-invasive.
As soon I as understood Sophia’s diagnosis, I used that knowledge to ask the relevant questions on her behalf to the individual consultants now dealing with Sophia’s case. There were three main characters. Sophia’s breast surgeon who would perform the mastectomy. The plastic surgeon – always immaculately suited and resembling the suave David Bowie from his hit ‘Lets Dance’. He would be responsible for the reconstruction of Sophia’s breast. And finally, the Oncologist. He advised Sophia to undergo chemotherapy as a belt and braces exercise following surgery. To say the entire team were tremendously supportive to a very troubled and anxious Sophia would be an understatement to say the least. Each of them was a credit to their profession at the Royal Free hospital in Hampstead.
One of my early decisions was to leave Google alone. I learnt to take each day as it comes and to deal with the facts as they came to light. I chose – as I do with everything of consequence – to deal with it day to day without focusing on what happens tomorrow.
A good friend of mine who’s wife had gone through it all several years before made me realise that it was important to focus on my own mental health and physical well-being. “Sophia,” he said, “Is being looked after by the best people in the business. But no one is going to be looking after you. Make sure you are looking after yourself.” That was one of the best pieces of advice anyone has given me – so I did.
As much as I was hearing about the negatives in the media, I now began to seek out the positives. This was another part of my strategy. People still living long after their treatment are in their masses. They are known as ‘Survivors’. However, I prefer to call them ‘Victors’. If you stop and think about it. Which is the more powerful statement? Sophia has been the ‘Victor’ now for more than nine years.
In life, we must never take things for granted, especially our health. Imagine where many of us would be today were it not for that first NHS mammogram appointment dropping onto our doormats. “Another thing that is surprising, is how many women ignore their appointments and the recall if there was one”, so said the white-haired doctor. Again she was right.
I do know that when confronted with such trauma people tend to react in different ways. Sophia held onto her Christian faith and the minor miracles that came with it. There are stories of partners leaving their wives to deal with the saga on their own, even walking away from their marriages. There are women who wanted to deal with it as a private matter shutting out their partners and everyone else in the process. And then there are those hoping it would go away by using alternative therapies costing thousands of pounds.
In the end, there is no substitute for being proactive by fighting the threat no matter what it may be. There is no substitute for ignoring the NHS appointments. Above all, there is no substitute for not checking one’s own breasts and if one’s unsure how to do that, there is no substitute for not asking. It could after all, save one’s own life to which there is never going to be a substitute for not living.
Andrew Charalambous.