Hi everyone! Its been a little while since I’ve shared a guest post for On Living With Illness and On Being Childfree – whilst it had been my aim to always make sure I had one or the other to share each week, the truth is these are challenging times now and asking people to write about difficult experiences isn’t perhaps the best approach. However, it also shows us just how resilient people are capable of being and none more so than the wonderful Claire who sent me some amazing Christmas decorations from her new business. Read on to hear her story.
I Am : Claire, 35
Home Is: Lincolnshire
I Do: JustPeachyBiz Owner (previously Chartered Accountant)
Here is my story on being diagnosed with brain cancer, aged 31.
Just 8 weeks before this I’d met the love of my life after being really good friends for over 10 years and I was busy planning our wedding day at the end of November. We have both been married before so decided that everything would be for us, the way we wanted it. So, I threw myself into crafting, making and pretty much spray painting everything I could find!
I met my parents at a local pub along with my 2 stepsons and all of a sudden, I had this really intensive headache that I just couldn’t shift no matter what I did. I went home to sleep it off, but they started becoming a bit more frequent. I was managing a team at work and it felt like almost every day I had to take myself away for an hour and sit in a darkened room to try and shift the migraine. This was really strange for me, and it was only when I started to get lights in my eyes that I booked a doctors’ appointment. I saw my lovely GP who gave me migraine tablets and told me how to take them. The next couple of days I had the same recurrent headaches and the medication was doing nothing. I went back to see her again and I think she could see the anxiety in my face. To calm me down she said an MRI scan would rule out any further problems and said it was matter of course. After speaking to her since she has said that she was trying to put my mind at ease…. Little did I know what was about to happen…
I had a call from the hospital offering me a cancellation a couple of days later on the Monday afternoon. I couldn’t decide whether to take it or not as work was horrendously busy and we were due to go on honeymoon soon, but in the end I accepted it. I went in for the scan and asked if I needed an injection as I am terribly scared of needles. The radiographer said no. I was in for 10 minutes and then pulled out. He said I needed an injection of dye to show any areas of concern. I naturally panicked and it took another 30 minutes for it all to take place. Straight after I went back to work and I looked like I’d been run over by a bus. They sent me home.
Tuesday came around and I went into work. It was one of those days where I had back to back meetings all day with no real time for myself. I kept on going until about 2pm and went back to my desk to find 20 missed calls from my GP on my mobile phone. People telling me that the GP had called, my parents had called. Whatever was the reason?!
I went outside and called the GP back and they asked me to go and see the doctor and I needed to have my husband with me. He works 15 miles away and I knew he also had meetings, so I’d have to wait for him. Luckily my fellow Team Leader at work knew there was something wrong and took me offsite for a drink while I awaited my husband. Even to this day I had no idea what we talked about, but she was wonderful at getting me out of the office.
Dave arrived and we headed to the doctors. We walked in and were shown to a doctor’s office that I had never seen before which made me edgy. He simply said, ‘I’m sorry to tell you but you have a brain tumour’. I simply could not take it in. My mind just paused. I then went into practical mode asking about what happens next, where will I go, any medication without realising there was a very good chance of it being cancer. That word was never mentioned. We left, completely dazed and I was then stocked up on the strongest steroids I have still ever seen. We told my boss I wouldn’t be in work for a couple of weeks and what they had found and then the big one… I then had to go and tell my parents. Telling them the news was the most heart-breaking thing I have ever, and will ever, have to do. Their faces just completely crumpled. I’m their only child and for me to be saying the reality of this situation to them cannot be comprehended. We all sat and cried together having no idea what was really happening, it was such a shock. The doctor had said that it was likely to have been there 10-15 years without symptoms then for some reason suddenly started to grow.
I think I was so exhausted I slept all night. The next few days were a rollercoaster of emotions – I felt I had to be practical, so it was all sorting things out for when I wasn’t here anymore. Dave and I used that time to talk, think about things we wanted to do together and even ended up going to the seaside and having chips and curry sauce! Looking back, we needed that time together, just the two of us. We are the absolute best team and his love and care have got me through all of the situations we have faced. I’d be lost without him.
I knew that by the weekend I would have a call from the hospital to arrange an operation to remove as much of the tumour as possible. On the Saturday we took the boys shopping and out for dinner and I got the call. I needed to be there the next day. In some ways looking back I’m pleased everything moved so quickly as I didn’t have a lot of time to worry about it and I didn’t want the kids to know what was happening. I got there on the Sunday and met by amazing surgeon and I think we all had faith and trust in him to look after me. One of the things he said was I may not come out of the operation the same as I went into it…but I simply had no choice. He also said that the amount of pressure in my head was huge and if we had gone on honeymoon as planned, I would never have got off the flight…
The 13th of February came around and I wasn’t far down the list. I spent a couple of hours with the people I love more than anything and then it was time. After being down there for 8 hours, my parents and husband shattered – I was finally back on the ward. They asked me a lot of questions while I was in recovery and there’s some that I still don’t know the answers to now! But deep down inside I knew I was ok. I was still the same girl. I remember saying to my Mum that I wanted to be able to wave and smile at her when she first saw me. And I did just that. They’d put a stupid bandage plonked straight on top of my head and I had a really bad haemorrhage around my left eye. As soon as she walked in, I smiled and waved, and she knew then I was ok.
Following the operation, I had a few days in hospital then was allowed to go home. What a huge relief it was to be able to try and SLEEP after being prodded and poked every hour. I did have to go back to have those nasty staples removed and then I met my oncologist. To start with she was very direct which I wasn’t ready for. She told me that it was definitely cancer and was terminal. There was no chance of recovery. My whole world just went bang. I didn’t have a clue what to do. She talked about radiotherapy where I may lose my hair either temporary or permanent and then chemotherapy. Talking about beams, coming in and out, having a radiotherapy mask made (one of the worst experiences) and having to do a round trip of 60 miles, every day, for 10 minutes of treatment for 6 weeks. I roped in a few of my friends to take me as well as Dave and my folks as one of the problems with having a brain tumour is you cannot drive so I had to give up my licence. The lack of independence was really hard, and still is sometimes, but I know I will never drive again. Now I know what is going on in my head I couldn’t live with myself if I had an accident and it was my fault. So bring on the walking!
About half-way through my radiotherapy I could feel my hair slowly thinning out and it absolutely broke my heart. My long hair has always been ‘my thing’ and to suddenly lose a lot more of it than I was expecting was horrendous. I can never fully explain what that did to me. I had to go and get a wig which really woke me up to the fact my hair was disappearing, and I felt like a ‘cancer patient’. I didn’t want people to pity me or treat me differently because I’d lost my hair.4 years on, my hair has pretty much come back, there are just some areas that were really affected by the radiotherapy and it will never return. But to look at me now, no one would have a clue of everything I’ve been through and for me that’s ok.
I found it really hard suddenly being in this situation having no idea how I should be feeling, if my worries were silly, stupid questions I’d never really ask anyone. So, despite all the advice not to look online, I did just that, but it didn’t get me anywhere and I totally understand why people say don’t read it all. Everyone’s story is exactly that…theirs…and my story will always be different to someone else’s.
Luckily, I searched on Instagram for tips to deal with radiotherapy and a girl who looked a similar age to me was smiling back – the absolute inspiration as she had just completed her radiotherapy for a similar brain tumour. I reached out and sent her a message and her response was amazing. She offered me tips and tricks for how to deal with things and I am forever grateful. She is now one of my best friends. We talk all the time and have managed to meet up a few times now in London and just simply enjoy each other’s company. Without her I would have been utterly and completely lost. It was so nice to have someone there that really understood the trials and tribulations of living with Brain Cancer. And what a rock she continues to be. To anyone reading, if you can find someone who has been through or is going through the same things as you it is an absolute god send.
So, following my radiotherapy, I had an MRI scan to see how it had affected the tumour and sadly it had continued to grow. That meant chemotherapy was next on the list. I was absolutely petrified – my fear of needles still ongoing and I had to have so many blood tests and cannulas. It’s still a struggle now but sometimes you just don’t have a choice. And worst case I was in hospital, so I knew they’d look after me!
I have since had 4 different types of chemotherapy over the last couple of years, some being given in hospital direct via an IV and some that can be taken in tablet form. The biggest thing I have had to deal with has been fatigue, to the point where I literally couldn’t get through a day without a nap. It’s also made me incredibly hungry as every time I have to take steroids and my appetite just can’t keep up. My parents came to sit with me day after day while Dave was out at work and even though it’s the worst experience I have ever had, it was actually the best for us as a family. We have always been super close, but It was so nice to be able to spend time together without the pressure of working. I will forever be grateful to them for the time they spent watching rubbish TV with me, bringing lunch with them and generally taking care of me of me, day after day.
The last cycle of chemotherapy I had in 2019, I was starting to run out of options, and it was chemotherapy for ovarian cancer that I was allowed to try. Luckily for me it has completely stabilised my tumour and it’s now started showing signs of slight regression. I am SO grateful that my oncologist worked with me and desperately wanted a positive result for me. One of the things my oncologist lives by is ‘if you can then go for it’. She has also been a huge inspiration to me which has given me opportunities I would never have done otherwise.
During all of my treatment cycles we tried to have a monthly break away somewhere in the UK which has been amazing, and I have a whole new love of different places right on my doorstep that I never would have visited if this hadn’t happened. I have also been granted a stay through the Willow Foundation at the Savoy Hotel in London which was an incredible experience – they literally catered for everything. We have backpacked around Europe seeing places like Paris, Zurich, Milan, Verona, Venice, the list is endless. We have also managed to get back to New York and done the one thing I wanted when all this started – to show my stepsons where their dad proposed to me. I simply love New York and to show them all of the places that meant something to me was perfect. And luckily last March we managed to get away on our honeymoon to Mexico. It was simply the best break I think we have ever had and I’m so grateful I have been well enough to do it.
One of the hardest things was to leave my job and my career. I studied for 7 years to become a Chartered Accountant and I had worked really hard through various positions at work to get what I was aiming for – a Team Leader post. I was so positive about it and genuinely loved my job. I worked part time and full time throughout my chemotherapy treatment but in November 2018 I had to make the hardest decision and meet my boss to discuss ill-health retirement. I really struggled to manage the fatigue while on chemotherapy with the requirements of the job and I wanted to be fair to the team and myself and made the heart-breaking decision to leave. Every time I talked about leaving, I cried, feeling like I was letting people down.
Since then I have started my own very small business called ‘Just Peachy Biz’ making products out of clay. I have always been an art lover and was always creative at school – many people expecting me to go into an art career instead of numbers! Now I am doing something I absolutely love, and it seems all my customers do too!
So far, it has been one hell of a journey but positive pants over here will always be exactly that – happy and positive. I have no idea how long I have left to live, but I’m going to enjoy every second for as long as that may be.
Thank you so so much to Claire for sharing her honest story as a guest poster and sharing her thoughts and views in this piece. As I’ve stressed from the very beginning, this is a warm, empathic platform for people to share their stories, hopes, dreams, fears. Please do read Claire’s story and leave a comment if you’d like to and share this series if you know anyone it could help. Together we are making changes.