Getting checked out
Dad of two, Simon Fanning, from Derby, is urging people to get to know symptoms associated with blood cancer following his own diagnosis in Spring.
This week saw Simon being told he is finally ‘in remission’ following nine long months of treatment. His journey began last year when he began to notice something wasn’t quite right.
His job as the Head of Training for a pharmaceutical company, combined with a tough physical training regime, and a busy family life, meant it was easy for him to dismiss his feelings of fatigue.
‘I would ignore everything as I put it down to all sorts of things,’ says Simon. ‘Blood cancer is the third biggest killer and the main symptom is fatigue. It goes away and comes back for a bit.’
Blood Cancer UK recently reported that more than half of UK adults were unable to name a single blood cancer symptom.
‘Blood cancer is the fifth most common type of cancer in the UK so it’s extremely concerning to continue to see such low public awareness of the symptoms,’ says Kate Keightley, Head of Support Services at Blood Cancer UK.
‘Sadly, symptoms such as night sweats and unexplained tiredness, weight loss and bruising can sometimes be dismissed or downplayed, with devastating results.’
‘We fear many people might also be confusing breathlessness, a fever and tiredness with Covid-19 and cases are being left undiagnosed.’
‘At the moment, we know that too many people are being diagnosed late, which often reduces the chance of survival, so it is so vital people get symptoms checked out as soon as possible.’
‘If you have symptoms that cannot be explained and are persistent, you should urgently make an appointment with your GP. While it is unlikely to be anything serious, it’s so important to get checked out.’
For Simon, his symptoms began in July last year. Within the space of a few months, his condition deteriorated to the point whereby he ended up in hospital – for 20 nights.
The first real inkling that something was badly amiss was during a family camping holiday last summer.
‘Katie, my wife, thought I was having a heart attack. I was sweating and my eyes were red raw. I thought it was an allergic reaction.’
‘In August I had stomach pain and it felt like appendicitis but I had already had my appendix removed.’
‘By September I was vomiting violently and put it down to having a stomach bug. My sweating was increasing and I was struggling to stay awake to put the children to bed, and, by that point, no amount of sleep would stop the fatigue.’
‘I put it down to workload and my hobby of weight lifting. I had to go to Paris in October 2021 for a pharmaceutical event where I was leading the ‘thought process’ during the conference – but I had intestinal pain and threw up for three hours.’
‘It continued when we went on holiday the following week with my family. I went to A&E but was discharged as there was nothing acute. I went back to A&E two days later where the doctor ran bloods, CT and X-rays.’
‘Twelve hours later and I was told they had found a tumour in my intestines and they wanted to look at it immediately. They had to remove 30 centimetres of intestine but it wasn’t the tumour type they expected to see.’
Standing next to Big Ben and the toll goes
A meeting with a consultant rapidly led to a PET scan which produces a three dimensional image showing what’s going on insides the body. Simon also underwent a bone biopsy before he finally began chemotherapy treatment in Spring.
‘At the moment that I was told I had a tumour, I burst into tears. I was thinking of my kids, my wife and my life.’
‘It feels like standing by Big Ben and the toll goes. It is a horrible feeling and I began to try to find ways to stay in a positive place.’
‘November and December were a dark time. I was losing weight. I lost 2.5 stone in two months.’
‘To keep me on track, I had to have a real focus with a plan to take control on the amount of nutrition I needed. I experienced a sense of denial that it was serious.’
‘I had Diffuse large B cell lymphoma. It’s really scary when you hear the words ‘Stage Four.’ The consultant gave me hope and I knew that as I would be on a combined treatment which could make all the difference.’
‘During the chemotherapy, I was getting heart palpitations and had an allergic reaction after the first session. It made me wonder if I could continue the treatment which would save my life.’
With the support of the medical teams, his family and his friends, Simon managed to carry on and go to the regular chemotherapy sessions.
Creating structure and a plan
‘It’s six hours of treatment, at least, every time you go. I ended up being neutropenic and had to have G-CSF injections to create more blood cells. It feels like someone is massaging your hips and spine. It’s horrible.’
Neutropenia happens when there is a drop in the number of a certain type of white blood cells.
It means the immune system is weakened and it can become harder for someone to fight off infections. Simon devised a plan to try to help him cope with the side effects of the treatment.
‘I created a focus for a liquid diet and on the chemotherapy schedule which included being ill for five days afterwards.’
The last of his chemotherapy treatments took place at the end of July. Simon will have regular 12 week check-ups before being given the ‘all clear’ in around three years’ time.
In many ways, he counts himself as being fortunate as the company which employs him was able to provide income protection so that the family could make ends meet.
He built a close sense of kinship with people undergoing chemotherapy at the same time as himself. He recalls some patients were still having to go into work so they could financial survive – despite the sickness they would experience after treatment.
‘During all of the chemotherapy, we wrote out a list of jobs that could be done so I could stay focused and not look inwardly. Doing things which are meaningful allows for a positive outlook.’
Ringing the bell and touching the stone
Patients can ring a ‘bell’ to mark the end of their treatment sessions or touch a stone which is designed to provide a sense of ‘closure’ and ‘reflection’ following their journey.
‘Every time I heard the bell it lifted my spirit as it means someone’s got through the treatment. Ringing the bell is all about how you think of it.’
‘All four of us touched the stone and it marked the end of the journey and that we’re moving on to the next chapter.’
‘There is a quiet space where you can reflect. Having the bell and the stone together is really nice. The staff come round and give you a round of applause. They know how tough it is.’
It’s not just the support from family, friends, fellow patients and medical staff which can create a colossal positive difference for someone undergoing chemotherapy.
Simon recalls hearing about the recent ‘Candles on the Cobb’ event which saw thousands of candles being lit around the iconic Cobb Harbour in Lyme Regis.
The idea behind the Dorset based project sees people sponsor a candle to remember a loved one.
The money raised going to a number of good causes – including Cancer Research UK. The event is organised by the Rotary Club and the next one is planned for 2025.
‘It’s about remembering the joy of being with those people and how people have touched you in the past and how you’ve become part of you.’
‘That chance meeting can give hope, joy, happiness or a new role and direction in life which strengthens us and moves us forward.’
Photographs kindly supplied by Simon Fanning