I was diagnosed with two PNETs (Pancreatic NETs) at the age of 35, one at either end of my pancreas. I had been off work sick for about 4 months beforehand.
I received my first pension payment in July 2019, when I was 36. I had been a deputy headteacher in a secondary school and had paid into the Teacher’s Pension since I was 22. Luckily, the Teacher’s Pension had two ill health options.
It was clear to me, early on, that Occupational Health were making noises along the lines of retirement and after many visits they suggested I contact my pension provider and start the conversations. This was all done through my union. My union informed me that early retirement due to ill health was a long-winded process and that most applications were at first rejected. So, after compiling all my evidence (months of work) I sat down to complete the forms which, only actually took a few hours. Off it went in the post, and imagine my surprise when my application was approved at the first time of asking.
When Occupational Health first told me that medical retirement would be their recommendation, I was mentally doing cartwheels down the corridor and out of the building.
In fact, it was the first time I had smiled in a long time. It felt like a huge weight had been lifted from my shoulders, and to be fair it had. I was very lucky that I was now financially sound due to my pension.
I get asked occasionally now “how am I in myself?”
I was asked this a lot at the start of my retirement and diagnosis. My wife says I’m completely emotionally unavailable. In the 21 years we’ve been together (we met aged 17 and got married aged 25) she’s never seen me cry – not at our wedding, the births of our daughters or the passing of loved ones.
It just isn’t something I do.
I keep my emotions in check and process them internally. I then package them up, put them in a box, compress the box and push them out the way. For me, crying is a waste of time, it won’t change the situation. So, when I tell you that when I received my diagnosis, I did not shed a tear and still haven’t to this day, I hope you now have some understanding of me and my emotions.
You might wonder what does upset me and of course there are things that do. I just don’t show it, or talk about it (as my wife read this to proofread it, it was probably the first time she’s ever seen so much talk of my emotions or mental wellbeing from me).
My feelings towards my family are as follows. I’m a believer that no parent should have to bury their own child, so I desperately want to out live my parents. I want to be able to enjoy my wife’s retirement. I’d always dreamed that we’d be able to have a little place in the sun and spend the UK winters there in the warm and be back in the UK for the summer.
And, for my own children? I’ll never forget where I was when it dawned on me that the chance of me seeing them finish school, graduate from university, get married or have children of their own was now massively reduced. I was driving down a small country lane and I actually, had to stop the car and give myself a talking to. I don’t know why I thought it. It hit me like a bolt of lightning from nowhere. I can remember what day of the week it was, what I was wearing, the weather, everything. It was like hitting a brick wall. I suppose I was expecting this feeling at some point, but to do with my own life and diagnosis, not about my own children. I’ll confess as I sit on a sunny summer day writing this, in the back garden, a feeling washes over me that I’m very uncomfortable with, and I’ve had to pause to go and make myself a very strong coffee.
Every business will act in line with their own policies and the culture of that business. Mine, left me alone. I didn’t necessarily ask for this, but it worked for me.
One day I was there, the next I was gone and that was that. No flowers, no card, no goodbye speech. Like I said, it worked for me, but this is my personal opinion. I feel that’s probably more a reflection on the type of organisation you work for.
As I had been off work ‘sick’ for over a year and went into retirement from that sick leave, I thought it might be hard to distinguish between the two. But I did. I’ll forever remember waking up on that first Monday morning knowing that I didn’t have to go to work, and I wasn’t “off sick”.
The first six months were like a holiday. However, it became clear to me that a daily routine and structure would be necessary. If, for no other reason that when you are at home you can spend money very easily. A coffee and cake here, a day out there and before you know it your months income has been spent in a week.
What I found difficult at the start of being off work sick was leaving the house Monday to Friday during work time. It felt like I was breaking the law or doing something wrong. That somehow, because I was off work, I shouldn’t leave the house. It took me about 6 months to overcome this.
The dreaded thought of “what if I was spotted by someone from work”. Would I get into trouble? It was Occupational Health who said I should leave the house during these hours and try to get back to a daily routine. What was also difficult was trying to explain to people when I was out and about the reason I wasn’t at work, firstly, I was off sick and then retired. I got the “but you look fine”, to which I gave it the, “You should see my insides”! Another one was, “But you’re so young!”
This was also the case when I used my blue badge. The looks from people in the carparks, I’ll never forget. I was once approached by a person who proceeded to tell me off for using the space. I let them go on for a good 3 to 4 minutes very politely. When they had finished it took me all of about 30 seconds to reduce them to the size of a pea. Their apology was much appreciated. The irony on that one was, it was a fellow blue badge holder. Judging a book by it’s cover comes to mind!
When I retired, I was 35 and so was my wife. My wife is a primary school teacher and was working 4 days a week. I was working 60 hour weeks before my sick leave and retirement. She, therefore, as well as working was the parent who ran the house and organised the family.
On my retirement that flipped. I now run our family house and my wife can focus on work. I do the shopping, cooking, ironing, school runs etc (I’ll confess we do still have a cleaner, I hate that job). This was a big change for our family. I am now responsible for ensuring everything gets done and this was a massive change for us all. I was used to working in a very fast and stressful environment and the family were used to my wife’s much more encouraging approach rather than my very direct approach.
Three years later we are all still finding our way with our new family lifestyle. I don’t ever think we’ll be used to this ‘new’ way of doing things with daddy at home (particularly my wife!).
As our children are under the age of 11 none of them know exactly what is wrong with ‘daddy’. They obviously know daddy isn’t well, as a number of ambulances have taken me away to hospital and unfortunately, they have had to witness this on occasion. All they know is ‘daddy’ isn’t well and daddy doesn’t have to go to work anymore. I will confess being a stay at home dad isn’t the career I was hoping for. It just does not really suit me. I like and thrive on high pressure environments that were fast paced where decisions needed making and I had vast amounts of responsibilities. That said, it is a completely different way of working and has left me with lots of time on my hands to ponder the future.
So, what do I ponder?
Well, ‘why me’ is always the starting point. I like to think my chosen vocation allowed me to make a difference in people’s lives and that for the most part that was a positive difference. So that can’t be why I am in my current situation. Maybe I did something to someone, and this is karma? Anyone who knows me will tell you I am highly strung and have some strong opinions and I don’t shy away from telling you if you ask (one of my best lines is “don’t ask if you don’t want to know”). Maybe that’s it then? Or maybe it’s just bad luck and you have to play the cards you are dealt. That’s the point I come back to most of the time. So, let’s play these cards then.
When I compare myself now, to who I was when diagnosed, I am very different. I am much, much more relaxed about my diagnosis. At first, I printed the Amend and NCUK patient handbooks from the internet, filled them out and used them like my bible. They were almost like a comfort blanket. Each patient meeting or medical appointment I went to, the handbooks went, and I held on to them for dear life. Over time I managed to relax. One of the NCUK members commented on this at one of the Stoke meetings. She happened to notice I didn’t have my blue ring binder with me and asked how I was with a little smile on her face. She pointed out the missing folder and we both had a little laugh about it. I’ll confess still to this day at some point each day I do think “hmm you have incurable cancer” but it’s not every minute of every day and when I do think it, somehow, I manage to push the thought out of my head and move on with the day. To be honest, it’s normally when I’m alone and driving.
If you’ve read my introduction as a NCUK patient ambassador, you’ll know my cancer was identified very early. Therefore, I consider myself at the start of my cancer journey and I’m aiming to make that journey as long as possible.
So, what have I learned so far from playing these cards, I hear you ask?
With regards to early retirement please do not stress about your work. One day you’ll be there, the next you won’t, and someone will pick up whatever you were working on. It is sad but someone will be able to complete what you had just started. You are replaceable.
Plan. Plan your time, plan your finances. Find those things you’ve always wanted to do and do them. But remember it’s a marathon not a sprint. While I do not have to go to work to pay the mortgage anymore, I still have a mortgage and bills to pay. The key for me now is making sure that the income I have, which will never increase, lasts. It is all I have.
Keep yourself busy. It can be lonely sat at home doing nothing all day long. There are plenty of clubs and volunteering opportunities that will bite your hand off even for an hour of your time a month.
My personal strategies for day to day life are to:-
1) always have something to aim for,
2) routine, be it daily, weekly, monthly or yearly
3) fitness both physical and mental. I know my journey has only just started and I’m prepared mentally for some long difficult procedures, but I’m also working on getting my body ready. I’ve lost 29kg in weight and ideally want to lose another 6kg.
4) enjoy yourself. Much like routine, have something to aim for. I like to plan nights out with friends and family in advance, so I know I have something coming up to look forward to.
So, whatever you do enjoy it and enjoy yourself. The world has been around for billions of years, humans hundreds of thousands of years and us may be a hundred years if you are lucky. What are you waiting for?
Go for it – Jump in – Get it done!
Simon