Supporting the

Neuroendocrine Cancer Community

It was just before Christmas 2017 when I quickly opened the post (on my own, standing in the kitchen) when I realised the words I was reading were telling me I had cancer – surely this can’t be true? I checked the name and address as this had to be a mistake. I rang the hospital to check it was for me and to ask to speak to the consultant who had sent it. Surely someone wouldn’t tell me I had cancer in this way?  Surely it was a conversation at the hospital especially when I had no indication that I had cancer? But it was true – on the phone the specialist confirmed that I should be, “… very very worried”. These were the words that stuck in my head and I had had the indicators but sadly no-one had pieced the jigsaw together – until a scan for an unconnected condition showed the true horror of how this silent cancer had progressed.

I had felt a lot more tired for about 3-4 years prior to this diagnosis I was even feeling really tired in work but I had put it down to being in a stressful job and getting a bit older – but it was getting worse, the doctor had told me I had IBS without any tests being done, “I know what it is” he had said – he was a doctor and I believed him. The same was true for my blood sugar levels.

Unfortunately looking back at a previous scan 4 years earlier the tumour could be seen in the pancreas – I had been doubly unlucky as it had now spread to the liver. Someone who probably spends their day saving the lives of cancer patients had maybe missed one. We all have bad days, we all make mistakes I don’t believe anyone working in cancer care would ever intentionally misdiagnose a patient and that is how I have processed it and left it. I feel I need to look forward not back.

I had decided not to tell anyone (except my lovely wife) over Christmas for two reasons – it would have been selfish to spoil Christmas and I knew there would be lots of questions to which I did not yet have enough answers. At the time I thought liver cancer with numerous tumours meant I was going to die fairly soon. It wasn’t a great Christmas for me, I was devastated, but I put a smile on my face, and I got through it and nobody knew.

This was the worst period and it is definitely for me the periods of not knowing that are always the most difficult of times e.g. waiting for scan results and multi-disciplinary team (MDT) recommendations. My anxiety increases my brain goes into overdrive and the pessimistic side of me takes over, but I have to fight that as soon as it kicks in. I look for a way of seeing the positives in a situation because I believe a positive mental attitude to fighting cancer is really important. ‘Easier to say than do’ and I do allow myself a bad day – usually I am quiet, and I process things. On those days I find myself something to focus on to take my mind off the situation by playing guitar, changing my mood with music or I exercise – they are my go-to things so I do not go spiralling into a dark place. Managing my mental health is as important as managing the physical impact of the cancer. For someone who has to understand something to cope with it, I have Googled less on this than in most other challenges I have faced. I took the nurses advice – I do a bit to keep me informed, but don’t let it take over and I am careful of what sites I use – NCUK is one of my most trustworthy sites where I can get accurate and clear information.

So, I was fairly quickly diagnosed with pancreatic neuroendocrine cancer – not a clue what this was! My hospital – the Queen Elizabeth Hospital Birmingham, has within it, the Birmingham Neuroendocrine Tumour (NET) Centre. It is an ENETS-certified Centre of Excellence which basically means it has a specialist unit that deals with this type of cancer and so my journey was off to a good start. I met my specialist Dr Shah and my neuroendocrine nurses and they gave me the time to ask all my questions and they explained things in a way I understood…..well most of it! The people in this department from the moment you are greeted at the door and throughout the process have been simply excellent! The whole place has a positivity about it and I hope others feel the same.

Dr Shah has an ability to reassure me and has a manner that calms me down whilst explaining things in a way that make sense to me. For someone so busy, he has positively impacted on me more than he would ever realise. I genuinely feel he and his team care about me and my treatment and that gives me the trust and confidence in him that I need to get through this.

After the diagnosis and appointments, I then had to have the most difficult conversations of my life – I had to tell my three wonderful daughters – who I knew would be devastated, that things would never be the same again. I struggled to come to terms with what I was about to do to them. They were all adults in their early twenties. I thought through how each one would react and rehearsed what I was going to say in my head so many times to make sure the message came across the way I wanted it to. Having worked with young people for many years this was going to be potentially a traumatic experience – one that was going to stay with them and I was the one doing it to them but equally I could manage the impact of that message. Listening to them now, I believe I had my moment when I got it right – it was bad news but by being clear, straight and honest, answering all the questions, recognising the way they felt and the way this may change, the tears, and the ‘living with – not dying from’ approach, all helped. They later reassured me I had told them exactly how they would have wanted to be told.

The journey quickly moved on. After discussion, I agreed with the decision to operate on what was the biggest operation they do. So, in May 2018 they removed my spleen, gall bladder, reduced the pancreas and nearly too much liver – but that is another story! Those first few days in intensive care were scary…very scary! But I got up and got moving like the doctor advised as soon and as much as possible and 10 days later I was home. Too early – and it was unfair on my wonderful wife who has been beside me all the way on this, but we learnt the hard way. Once home I walked twice a day whenever I could and was very determined to recover and get back fit again. I did too much and learnt to take baby steps and not to do too much when I was having a good day because all that happened was I fell off the cliff the next day. A friend had told me this is your time to focus on you – so do that, others will cope while you recover. I did recover and I got as fit as I could – thank goodness. The tumours had started to grow and so after being told they would not operate again and having to deal with that realisation, I was then back in 12 months later and having a few more tumours taken out of my liver. So, this really is a rollercoaster ride and things that you think are fixed can change.

I didn’t want to go through it all again, I wasn’t as fit as the first time, it was very complicated for the surgeon who told me the night before: “I don’t think I can get it” – not something you really want to hear at that stage – but he did, he did get the tumour out! I will never forget the elation and sense of gratitude I felt when he told me. He used all his skill and knowledge and again the wider medical team kept me alive. Onto another recovery much quicker this time as I knew how to do it. “Baby steps…baby steps… don’t rush it.”

What my family went through throughout these operations was too much for me to think about, all I could do is remain as positive as possible and for them to know I would do everything I could to get through it and recover – that was the one thing that I felt was within my control. I never realised how important those cards and messages from friends and family are when you are recovering – on bad days they lifted me and on good days they pushed me further on.

Back out and back on the Lanreotide all good fun! But I can manage the side effects now.

I got back to work again but had recognised the stress of work was going to impact on my ability to fight this disease and give me a good quality of life.  So, after the second operation I applied for and accepted ill-health retirement. During my first operation I had a manager who was incredibly supportive he told me to focus on getting better and he would deal with everything else in terms of sickness and the service I cared about. I felt quite humble in the reaction of my work colleagues to me and the things they had written and said.  But retirement was the right decision for me without question, even though I loved my job as Joint Head of Birmingham City Council’s Youth Service and all that it has given me and what I had contributed over the years. It was time to go, as difficult as that decision was to make. At the moment, what I really miss are the people I work with, the conversations and the laughter. But on the plus side, I now have so much more time to annoy my girls!

I would suggest to anyone going through this to find someone you trust and can talk to honestly about, well whatever you need to talk about, maybe consider someone outside your family so you don’t feel you need to hold back to protect them.

This journey has led me to learn and appreciate even more about my girls as adults – how good they are at listening, the laughter they bring in their own special way, their wisdom for people so young and for enjoying more experiences together. One of the things I do well is fix things – they’ve always felt I could fix anything, but as I explained to them this is one thing I cannot fix, and that was difficult for me to accept. But they have told me that what it has taught them – is how to cope with the set of cards life has dealt us as a family and that this has shown them a different kind of strength and resilience they had not experienced before.

My youngest daughter Lucy is a singer songwriter and is living at home so singing at the top of our voices after dinner, watching her perform on stage, writing new songs or being creative in the studio is a really enjoyable and inspiring part of my life.

I had lots of ideas of what I now wanted to do and then immediately along came Covid and shielding! And guess what? The latest scans show the tumours have started growing. 

I have just been told that the MDT are recommending PRRT.                        

So, on we go……it feels like the rollercoaster is about to start climbing the hill again.

My cancer journey has been tough. I still find it hard to see the impact my condition is having on those around me and I do get down days. But the fight, the operations and the treatment are absolutely worth it because look at all the positives it has brought me. I got to walk my daughter down the aisle, I have met some wonderful people, I have been to loads of gigs, I have been to watch my team for another two seasons, I got to enjoy more of life with my special wife, daughters and family. We have been on holidays – no not abroad – but seen beautiful parts of the UK that I perhaps wouldn’t have previously prioritised, shared birthdays and other special occasions. I have learnt to play the guitar – my new passion and go-to when I need to switch off, I have made my garden beautiful again after two years of neglect and got myself fit again and feeling good about my battered body. I have had lots of happy times with my family. There is so much to live for, so stay positive but allow yourself a few bad days. Remember it is good to cry (and especially to the male readers, do not ever mistake tears as a sign of weakness) for me, occasionally, it has been a good release. But overall, really try and have fun, enjoy life, learn something new, laugh and life can be great…..really great. But it definitely has rollercoasters to ride and mountains to climb – so just hold tight and enjoy the view.