Supporting the

Neuroendocrine Cancer Community

I was a “typical boy” throughout my own education. I did as little as possible and hoped for the best. I had no idea what I wanted to do with my life and very little in terms of education, interested me including my undergraduate course. All I knew was I majorly underachieved at every level.

However, after my undergraduate finals, my mother convinced me to go and do two weeks of “work experience” at the secondary school where she worked in the maths department. I loved it and was hooked. However, I’d already signed up for an MSc full-time back at university. In hindsight, I should have cancelled this and gone on to do a PGCE in secondary education. However, I didn’t, so off I went to complete my MSc – but not really getting the most out of it. 

Fast forward to September 2007 and I start my career in secondary education teaching Business Studies and ICT. Over the course of the next 12 years, my career took off  – I was promoted, headhunted, and moved schools a few times to further my career. 

Fast forward to my diagnosis in October 2018 and my world changed forever. 

Cancer meant I had to retire from work, and I knew I would need something other than family in my life. 

I’d been responsible for large numbers of students, staff, budgets, resources, etc and with that responsibility came all the joys and pitfalls of such a job. So to suddenly have no responsibility or purpose in life anymore was a real shock. I knew after the first few months of retirement at 35 that I would need a focus in my life. 

I had so much more still to give.

I looked for opportunities where I could use my skills from my career to help my local community. I was already vice-chair of governors at my children’s school, so I could now truly devote the time needed to do this properly. 

I put myself forward to be parent governor at another school and was successful. I live in a small rural community where the Parish Council are very active, so I started litter picking weekly and took responsibility for the local ‘community speed watch’ group with Staffordshire Police. 

I introduced myself to the local food bank one day thinking I may be able to volunteer to prepare food parcels together. This didn’t happen!  Instead, I took on a trustee role for the organisation and a more strategic role helping to review and write policies. 

When I was first diagnosed, I wanted to find out as much as possible about my condition and came across both Neuroendocrine Cancer UK and AMEND. I must have made myself too well known, as I was approached to be a patient ambassador, which I was more than happy to accept. 

Finally, and probably most importantly, my role was now full-time Daddy and runner of our home. 

The role of Daddy was probably the hardest for me and my family to get to grips with. 

I don’t want to stereotype but for my family, it’s fair to say that before I retired, I was the one chasing the career (a decision that both my wife and I, made jointly before we had children). This meant I worked 10/12 hour days, 6 days a week, and half my holidays. Which left my wife to hold down her teaching job, the running of our house, and looking after our three children. This became my job. 

What a shock to the system for all of us! I’d say after three years we now have a system that all of us have had to compromise on, but just about works. My wife found this the hardest. She now went to work and ‘only’ had to go to work. She didn’t need to get the children up, get them ready for school, or make all the daily arrangements. She didn’t need to run the house or do any of the chores. That was my job. Difficult for both of us. She wanted and felt like she should be doing it in her role as mum, and I didn’t want to do it as I didn’t have the level of control I was used to. 

Once my wife went to work and the children were at school this left a large part of the day without a lot for me to do. The housework while time-consuming isn’t difficult and doesn’t take up all of my time. I’m a man of routine and ‘a gets on and do’ view on life. Housework doesn’t offer me the mental stimulation that I got from going to work.    

For me, when I was at work I was used to a certain authority and responsibility and I was craving something to do and get my teeth stuck into. 

I understand this isn’t for everyone but volunteering for Staffordshire Police through community speed watch sure did it for me. I needed a target, something that could be measured with an outcome I could see so that I would know I’ve made a difference. 

As a group, we managed to reduce speed in our local village by two-thirds. Bearing in mind we have a small village school where over 50% of the children walk to the school, I felt this was a productive use of my time. Likewise, working with the local foodbank gave me a huge sense of satisfaction. I might not have been producing the food parcels as I initially intended, but I was now writing policy and reviewing the arrangements for running the foodbank. Because, of the work the team did we were able to fulfill the demand put upon us by Covid-19. Again, extremely satisfying for me to know that those in need in the local community were helped. 

I’ll be honest, while I’m only involved with a few groups, each group has its own demands which are normally timely but when added together do take up significant amounts of time. Meetings are normally in the evenings which is then a juggle with my primary role of Daddy. The children need picking up from school, looking after and four out of five nights a week have clubs they need taking to. I’m reminded regularly by my wife that the Daddy role comes first. Apparently, I slip back into work mode and my priorities are the wrong way around on occasion. Sorry family!  

The issue I have with keeping myself busy with these roles is obviously illness. I hate letting people down. If I say I’m going to do something I want to be able to do it. 

However, on more than one occasion I have had to send my apologies as I’ve been too unwell to attend a meeting or complete a responsibility. I’m lucky that all the groups I’m involved with know about my illness and health conditions and are very understanding if I’m not able to attend in person. Covid-19 ironically has helped as meetings have gone online. It allows me to attend if feeling unwell knowing that I can excuse myself if needs be.    

Looking to the future, I really don’t know what that holds for my role in life. I desperately miss teaching and helping others. Knowing that I can never return to it is depressing. The look on a student’s face when “they get it” was fantastic. The looks on a student’s face on GCSE or A-Level results day when they have achieved their potential was brilliant. 

My role as Daddy and husband will obviously continue. However, my day-to-day Daddy role will change over time and one day run out of its current capacity. The children will grow up and leave home. The house will still need cleaning, ironing done, and dinner on the table for my wife. I hope she’ll be able to retire at 55 (17 years to go) and we’ll be able to take advantage of cheaper holidays outside of school holidays to travel and take in the world. 

Two things I know for sure:  I’ll never work again, and my MEN Type 1 (Multiple Endocrine Neoplasia) and Neuroendocrine Cancer won’t be going away.      

What would I say to you if you have a change in role on the horizon? 

Give yourself a break. Give those around you a break. 

A change as big as I’ve discussed above is not only difficult for you but also for those around you. You’re taking on a new life, and not necessarily the one you chose but one thrust upon you. I was guilty of taking it out on those around me. 

A cliché I know but it happened, and all I can do now is work as hard at my role of Daddy and husband as I did in my career to make up for it.

Simon Walsh, Neuroendocrine Cancer Ambassador.

Simon was diagnosed in July 2012, with Multiple Endocrine Neoplasia Type 1 (MEN Type 1). In October 2018 at the age of 35, he was diagnosed with 2 Pancreatic Neuroendocrine tumours (one in the head and one in the tail of the pancreas, both less than 1cm in size). Stage 1, Grade 1. Today, he is on monthly Lanreotide injections which he administers himself, and takes Creon daily.

Blog written: November 2021

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