Nichola’s story

flf_nicolestory

I am 48 years old, live in England and am married with 2 daughters, aged 14 and 17. I am an assistant head in a primary school.

I am stage 2 and was diagnosed in February 2017. When, I was diagnosed I had already done a lot of research whilst waiting for results and knew what the consultant was going to say. To be honest it was all a bit of a blur. I remember him saying ‘do you understand what I’ve just told you?’ I think he expected more of a reaction. To be honest, I just wanted to get out and tell people because I was dreading having to deal with everybody being upset.

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I find active monitoring a real mental challenge. I feel quite out of control and feel like I have a shadow hanging over me. As the years have passed I have learnt to manage those feelings of anxiety and panic a little better.

I have needed help along the way, regular counselling and sharing on forums with people that understand. The biggest challenge was, and still is the conversations I have, and continue to have with the children – they are the hardest conversations I’ve ever had. However, on the flip side, I have realised what’s important in life, even more so when shielding during covid. I have a much better work life balance. Family time is so important and just the little things that make every day a little happier. I also take the time I need if I’m having a bad day and I don’t feel guilty for it. Well, I try not to!

I was diagnosed when I found a lump in my parotid gland. I had 2 operations over 6 months to remove it and then 12 sessions of radiotherapy. Other areas then glowed up on a follow up PET scan, hence active monitoring.

Work was tough. I took 12 weeks off following both operations but continued to work through radiotherapy. That was probably the wrong thing to do and I soon came crashing down with a bang. I had to shield during covid and that was really tough. There were some challenges when returning back to the workplace with them not really understanding the need for the vaccines before I returned. That was a really stressful time but with support from the consultant and occupational health, we were able to navigate our way through this. I only work 3 1/2 days now and that’s enough. When I’m having a bad day, work is hard but I have a wonderful team around me.

My husband, friends and family have all been brilliant. I know how upset they were following diagnosis and the worry it causes them but they are strong and we are stronger together.

In terms of how the diagnosis has impacted by outlook on life, I’ve probably become a lot more selfish – not in a horrible way but in a way where I no longer feel guilty if I don’t want to do something or go somewhere. If it stresses me out, then I don’t do it. It would be unnatural not to think about the ‘what ifs’ and I do think about them. I just want to be happy. I don’t wish for anything big or amazing. just to be with the family and friends I have and be around for many years to celebrate milestones with them, weddings, birthdays and grandchildren. However, I do intend to retire at 55 and go wild!

I think it’s really important to find something that takes your mind to a place where you don’t think about lymphoma. Whether that’s reading a book, an exercise class or meditation. For me, it’s swimming. For that hour I’m in another place, counting lengths and it’s bliss!

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Counselling and talking about how I felt really went a long way in getting me through some really tough times.

I really wish I’d accessed this at diagnosis instead of putting on a brave face and plodding on. It’s not for everybody but it worked for me. I also wish I’d taken time away from work to really process things, because it’s so important to give yourself the time and space you need.