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Frustration At Trying To Get Oesophageal Cancer Diagnosis

The symptoms of oesophageal-gastric junction cancer are vague and difficult to determine, but when Sean Greer was sitting in front of a bowl of soup for lunch and finding it really difficult to eat it – feeling like it was climbing a hill – he knew there was something wrong.

“My first recollection of feeling that something was unusual,” Sean said, “was back in September 2019. I’m in a drama club and I remember going down to rehearsals on Sunday afternoons and the feeling I had was that my stomach wasn’t right. I was slightly nauseous and I couldn’t tell if I was full or hungry, which sounds a bit strange, but from then on the messages that my stomach was sending to my brain didn’t seem to make any sense. I had this sense of “Have I not eaten enough?” or “Am I too full?” There was this strange, uncomfortable feeling, but it didn’t stop me from doing anything. Eventually, however, there was just too much discomfort and so eventually I did go to the GP. 

“His guess was that it might be helicobacter pylori.(HP) – a bacteria that causes stomach ulcers. There was a simple test for that that proved positive, so they gave me a course of antibiotics for a week and I took those and that eradicated the HP, but it didn’t make any difference to me, so my initial assumption was that the antibiotics hadn’t worked. I was back at the GP in December and he had started to think it might be a kidney stone or gallstone, so he said not to worry and he referred me for an urgent endoscope. I was happy enough with that as, again, I wasn’t in any terrible discomfort. I didn’t think I was losing any weight but, in retrospect, I maybe had but I’d never been very big anyway. If I’d been 20 stone and had lost four stone, it would have been significant, but if you’re nine stone and lose half a stone it’s not that much.” 

For a while, things seemed to be OK, but, by late January, Sean still hadn’t heard anything and so he’d started to think the GP hadn’t called the hospital or hadn’t made the referral, and so he called the hospital himself. It turned out that Sean’s name was on the list, but the list was an incredible 72 weeks’ long. 

“I didn’t know what ‘urgent’ meant,” Sean continued, “but evidently “urgent” didn’t mean “urgent” at all. That was the first big shock. 

“Meanwhile I was starting to feel a bit more uncomfortable. It was a strange feeling in my stomach. The nausea was stronger and I wasn’t enjoying eating as much, but I didn’t have any problem with anything sticking or anything like that. then I started to think maybe I should try and get something done privately – reluctantly – but we had some insurance at work that had actually just come in, so I thought I would try that, but, before I did anything about that, the hospital called me in for an ultrasound. 

“I went for the appointment in mid-March for an ultrasound and it was all clear. Everything – stomach, spleen, gall bladder – all was clear. That was good news but equally bad news because I still felt the same and now had no answer. Just the next week, everything went into lockdown and I wasn’t able to get anywhere with the GP or even private clinics and they were only offering consultations over the phone.

“It just felt really uncomfortable and my stomach started to feel cramped – especially early in the morning. I stopped sleeping well and would get up in the middle of the night after two or three hours, so I’d started sleeping on my back. Towards the end of April my wife and mother-in-law persuaded me to go to A & E. I knew it wouldn’t help because they don’t give you endoscopes at A & E, but it was my only option. 

“I’d also started to get night sweats – you wake up and your clothes are wet. You wake up after a sweat. It was surprising how wet my clothes would be. I didn’t know that was a sinister symptom. When I was at A & E they treated me well but they weren’t really able to do anything for me beyond the normal observations. I went to them because I had nowhere else to go. What they actually did was send my blood to the lab, asked about symptoms, felt my stomach and told me everything was fine, and keep pushing for an endoscope, which is what I really needed most. 

In April I was furloughed from work, but I spent a lot of time in the garden. I was really tired and I didn’t know why. I think symptoms creep up incrementally on people. Some are more reluctant to heed their symptoms and avoid the GP. Because things creep up you don’t take them that seriously but you just start to notice. I couldn’t understand why I was so tired.”

It was much later in early August that my blood was taken again at the request of the hospital consultant who was now on the case after a private CT scan in July. It was then that I got a phone call from the hospital telling me my iron level was 79 and to go, almost right away, for an iron infusion, my iron levels had been slowly going down as a result of the undiscovered tumour which was growing in size.”

“The time period between when I went to the GP and the tumour was confirmed was about nine or ten months – between October 2019 and August 2020. I asked about the stage of the tumour several times, but consultants are very reluctant to tell you the stage because each individual varies and each cancer case varies as well. It was about ten centimetres but not in diameter; I asked the consultant if it was like a big apple but he said more like a banana.”

As with most patients with cancer, Sean’s journey with the disease was just beginning.

“Everyone’s cancer journey is two halves,” he said. “You have symptoms and you’re trying to get it diagnosed and that journey can be long and stressful because you know something’s wrong. It’s nearly like a relief to get a clear diagnosis, but then it’s a scary diagnosis and then you’re looking at the next road ahead which is treatment. It’s bumpy too, but you’re in the hands of experts. When you get the final diagnosis, it’s a mixture of relief and anxiety and fear. I didn’t dwell on things because I didn’t want to scare myself too much.”

Sean immediately started focussing on his recovery.

“I was determined to be positive about it and I’m lucky too that the people around me were very supportive as well. It’s quite hard telling people. That’s a stress in itself. Calling your friends and family – going round to tell your mum – even though they knew something was wrong. You have to explain it seven or eight times to different people. 

“I read a bit about it on the internet but Dr Google can get you into lots of areas you don’t want to be in. I found a good book and read it because my idea was to know your enemy. I didn’t get down about it. The hospitals do move quite quickly. Chemotherapy was only a few weeks away and it was good because you felt something was being done. The chemotherapy worked quickly and eating became easier soon after the treatment. I was still anaemic for quite a while – I had to get iron infusions and I was very tired for a long time, but eventually that came back. The chemotherapy lasted until November last year and then I had a brief window of about three or four weeks in December when I could eat well and felt good. That was the best I’d felt in a year. I felt I was on the road to recovery. Then I had surgery on 4 January. 

“I’m now walking every day and trying to get used to eating again. I’m looking forward to getting back to work again – I think I’m too young to retire. Being on furlough has been inadvertently helpful for me.” 

“It was a weird time for everyone but maybe even weirder for me. Furlough or not though, I wouldn’t have been able to go to work at that time. My workplace was very understanding.”

Sean’s outlook and perspective on his experience is extremely positive and he’s looking forward to what the future holds for him.

“From here on in, I’ll be getting a regular CT scan just to check everything’s OK,” he said. “I think everyone with cancer always has that niggling fear of a return in the future and it’s vital to go back to the doctor if symptoms return, but the pathology results of my surgery were very good. The consultant told me they were very confident that they got it all. My surgery was the very last one of the oesophageal-gastric cancers they operated on before they stopped all the surgeries because of Covid. I got someone else’s slot because they cancelled, so I would only have been getting it now, so I consider myself extremely lucky. 

“After experiencing oesophageal cancer, the main thing is that you feel lucky. Lucky to be alive.”

Health & Beauty

Mental Health Champion of Northern Ireland Appointed

1. Siobhan O’Neill is a Professor of Mental Health Sciences at Ulster University, and the Mental Health Champion for Northern Ireland. Her research programmes focus on trauma, mental illness and suicidal behaviour in Northern Ireland, and the transgenerational transmission of trauma.

Following a recent external recruitment process, Health Minister Robin Swann has appointed Professor Siobhan O’Neill as the Mental Health Champion for Northern Ireland.

Professor O’Neill is the current Interim Mental Health Champion and Professor of Mental Health Sciences at Ulster University. She is one of Northern Ireland’s leading experts in the field of mental health, known for her active and passionate involvement in suicide prevention. 

Making the announcement Minister Swann said: “The mental health and wellbeing of our population is a priority which has been further highlighted during the COVID-19 pandemic.  Appointing a Mental Health Champion is another key step to ensuring those suffering from mental ill health will have access to the services they need, when they need them.  I am delighted that Professor O’Neill has agreed to continue her crucial work that she started as Interim Mental Health Champion.”

During her time as Interim Mental Health Champion, Professor O’Neill has been an advocate for mental health at both public and governmental levels.  She led a mental health and wellness campaign throughout the winter pandemic restrictions and has been an advisor to the Department of Health and Executive colleagues on the mental health impact of the COVID-19 pandemic.

The Minister continued: “I recently announced a new 10-year Mental Health Strategy setting out the future strategic direction of mental health services in Northern Ireland.  I want to break down barriers and put individuals and their needs at the centre of what we do.  The appointment of a long term Mental Health Champion underpins the provision of a voice for the most vulnerable in our society and across government now and in the future.”

Professor O’Neill said: “I am delighted to continue as the Mental Health Champion for Northern Ireland, so that the voices of those who struggle with their mental health are heard, and that their voices influence policy and practice to ensure that good mental health and wellbeing is a priority across Government Departments. 

“The 10-year Mental Health Strategy is a positive step in improving mental health services and demonstrates why mental health must be a key priority for Northern Ireland. I look forward to continuing my work with Minister Swann, the Executive, those with lived experience of mental ill health and those who provide services on the ground, to ensure that the actions laid out in the strategy are delivered to help Northern Ireland to flourish as we recover from the current pandemic and into the future.”

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Health & Beauty

Grants for Groups Supporting Carers Announced

Health Minister Robin Swann has announced the allocation of the first tranche of grants to organisations providing vital support for carers. 

Almost £600,000 of the £4.4m Support for Carers Fund has been awarded to groups across Northern Ireland. It’s part of a £24m package of funding made available in response to the COVID-19 pandemic to support carers, cancer charities and mental health organisations.

Following assessment, 16 applications have been successful in securing funding which will see a total allocation of £594,921 from this round of funding. The activities being funded include provision of practical support, wellbeing events, respite, advocacy support and work to address isolation and loneliness. Projects cover both adult and young carers.

The Health Minister said: “I want to pay tribute to the many thousands of people in Northern Ireland who help to look after a family member or friend without financial reward.  Put simply, the health service could not cope without them, particularly during the COVID-19 pandemic when their role was absolutely vital.

“When I launched the Support for Carers Fund earlier this year my focus was to support projects delivering on the ground to make a real difference to individual carers. I have therefore been pleased to hear of some of the practical supports that the Fund will allow through this first set of awards.

“The awards that have been confirmed are only the first tranche of the overall funding pot of more than £4m. This represents a very significant financial investment and I look forward to seeing how it brings about a sustained improvement in the lives and experiences of individual carers in the coming months and years.”

The Fund is being administered and managed by the Community Foundation NI on behalf of the Department and aims to provide grant funding to organisations with charitable status that can deliver outcomes to improve the lives and experiences of carers.

Community Foundation Chief Executive, Roisin Woods said: “The Foundation is thrilled to be granting these monies to projects helping in the care sector.  Like the Cancer Charities Support Fund, there was a massive response to the funding, which will provide almost over £600,000 to organisations supporting care groups locally.  The funds will be available for three years, making an impact over a longer period of time, which we know will create a meaningful difference in the lives of many. A second round of grants to support carers will open in the New Year.

“We realise some projects will be disappointed today, and we would encourage them to bid if they can for the new round of funding and to really think about how they undertake their applications to ensure they meet the criteria for funding.”

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