Me and my Oligo
June 2021 – Update
So, I am now on my 17th and final round of my chemotherapy. You would think this would be a time to celebrate. A time of happiness and excitement, however, it is quite the opposite.
I know that sounds negative and almost ungrateful in a way, something that definitely isn’t me.
The fact is I have a condition that as yet is incurable. I’m now heading into a stage of my journey that is called “watch and wait” (a surveillance period). This means I will continue to have an MRI scan every 3 months. I am now heading into a period that I’m becoming increasingly anxious about. A feeling of helplessness and loss of control. My immediate thoughts are, that my treatment has been the one thing keeping me alive and now that is coming to an end, surely my tumour will start to progress. After numerous discussions with my oncologist I know this isn’t strictly the case, but the truth of the matter is, I am entering a period of uncertainty and one where no one knows the answers. I’m literally as it says on the box waiting and watching.
The thing is, what am I waiting for? Am I waiting for the inevitable, or do I choose to get on with my life in the best way I can. The trouble is you lose that control. I’m trying to battle with my feelings and thoughts and what is helping me through this is my love of cycling. Cycling has allowed me to think but more importantly it allows me not to think. I’m constantly giving myself challenges which helps give me a sense of purpose and prove to myself that I can still achieve my goals, but also to show others what can be achieved when faced with adversity.
I try not to look to far into the future. I live in 3 monthly cycles concentrating on one week at a time.
“Whatever they say in that room, everything is going to be alright.” These are the words I said sitting opposite my wife, in a chicken restaurant, before walking into St. George’s hospital to find out what my future holds.
This is My Story.
Up to a year before diagnosis I started getting flashing lights in my left eye. Then, whilst on a family holiday, I noticed I was becoming very disoriented. A disorientation that you would feel from the effects of an extremely bad hangover. I then started becoming very unaware of things coming at me on my left side and bumping into things. After time, I realised the disorientation I was feeling was due to a loss of vision on my left side. After a discussion with Kate (my wife) we decided that it was best to get things checked out and see a GP.
Following a doctor’s appointment and discussing my symptoms, they referred me for an eye examination at a local hospital. After numerous eye tests I was sat in a room waiting for my results when in came two doctors. They confirmed that although my vision was fine, I’d lost a lot of my peripheral vision on my left side. Their concern was that I may have suffered a stroke and asked if there was any family history of this condition. They then told me I needed CT scan – immediately. For this I had to go to an A&E department at another hospital. After the scan I was placed on the A&E ward to wait for my results, when two doctors walked through the curtain, followed by two Macmillan nurses. Immediately, there was a realisation that this wasn’t going to be good news.
Kate started to crack and I could see her getting very upset. They then told me I had a large grey matter on the back of my brain. At that time it was not known what it was, but from their reaction I could tell it wasn’t good. I was kept in hospital for the night awaiting further tests. This ranged from numerous blood tests, MRI’s etc. Everything was then referred to St. George’s hospital where a neuro team would find a diagnosis.
I Couldn’t Understand.
We had the weekend to wait for the results and on the Monday we travelled up to St. George’s hospital. In the room there was a neurosurgeon and a cancer nurse. They then gave me the news that I had a brain tumour which was 3cm x 5cm in size. They said it was more than likely to be an Oligodendroglioma. This would be confirmed be a biopsy. At the time this meant nothing to me. All I heard was brain tumour. Kate began to break down and was consoled very kindly by the nurse. I, on the other hand, went a bit blank. All I could think was, was this cancer? How long have I got left? Am I going to see my kids grow up?……..
At that time I don’t think I took a lot in. I couldn’t understand as I was not physical ill and on the contrary, probably in the best shape of my life. How was this possible? It was then suggested my best option was for surgery to debulk the tumour as much as possible. A week later I was in for brain surgery to remove as much of the tumour as possible, without destroying any healthy cells leaving me potentially brain damaged for the rest of my life.
After surgery, the biopsies were sent to the lab where they would find the full extent of the diagnosis and if any further treatment was needed.
In a room with two cancer nurses and the surgeon I was then diagnosed with a grade 3 Anaplastic Oligodendroglioma. As before this did not mean much to me. I was told that I would need further treatment in the form of radiotherapy and chemotherapy. It was then that the nurses were telling us to go and live our lives and enjoy our time with our kids.
Fatigue is Not Tiredness.
I’ve since gone through 6 weeks of radiotherapy and 14 months of chemotherapy that is still ongoing. Obviously with all treatment there comes side effects. Fortunately for me they have not affected me too much. In a strange way I have welcomed the side effects as it gives me some comfort in believing that the treatment is working and having some effect on me, preventing the progression of my tumour. I do sometimes find it difficult to concentrate on things and I think it has affected my memory slightly.
The main side effect that has affected me is tiredness and fatigue. This may be due to the treatment, but can also be the effects of the tumour itself and is something I will learn to live with. I since found out that nearly everyone with a brain tumour experiences chronic fatigue on a regular basis. Fatigue is not tiredness. Tiredness is the feeling when you’ve had a hard day at work and you need to rest and you slowly fall to sleep. This is fatigue which is something else. So far in my experience I have days where I just cannot function properly. The idea of doing something is exhausting and I just don’t have the ability to think straight. However, this hasn’t prevented me doing things physically. I still manage to do a physical job as a builder and continue to cycle most weekends.
It is whilst going through my treatment that I started to research my particular brain tumour. It is life a threatening tumour and will most likely at some point end my life. Anaplastic Oligodendrogliomas are not currently curable but they are treatable. My life for me and my family has changed for good. You tend to look at things with a different perspective. Funnily enough my symptoms have a very similar reflection to my new life. It’s like looking through a tunnel. There’s stuff going on in the periphery, but I am now concentrating on the things that really matter straight ahead of me.
Living with Oligo.
I don’t really feel like I’m fighting my cancer. This is because living with a brain tumour is exactly that. A fight has an end. Due to the nature of high grade brain tumours they will always be there and you’re going to have to live with it for the rest of your life. That is not to say you cannot live a happy fulfilled life. Yes it has changed my life, but I am learning to adapt and will continue to do so. This is when I have to help myself as well as receiving the help and support from others. Human beings have an incredible ability to adapt to the situation we are in and for me that is exactly the case. The way I look at it is to not waste time and energy on the things you cannot control. These are the cards I’ve been dealt so I try to focus on the things I can control to give me the best quality of life. It is a very up and down journey and one which is lived in 3 month cycles between scans.
You’re Not Alone.
I have found that one of the main things that has helped me through this experience is physical activity, setting myself challenges and goals, giving me things to focus on. I have always been a competitive sports person and since retiring from rugby I have found a love of cycling. I have set myself challenges for charities such as The Lewis Moody Foundation and The Brain Tumour Charity and will continue to do so. I love a challenge and I look at living with a brain tumour as another one of my challenges. I’m hoping by telling my story that this might help family, friends and anyone else that wants to read this, to help understand what it’s like living with a brain tumour. I’m also reaching out to people with a brain tumour to say you’re not alone. I know from personal experience that you can take some comfort in knowing there are other people out there who know exactly what you’re going through.
I don’t claim to be able to write. I’ve probably only read a dozen books in my life time. For this I apologise, grammar, spelling, punctuation….. However, this is me and how my thoughts are at this particular time. The fact is, that this one of the most underfunded and researched cancers although it is still the biggest cancer killer of under 40’s. Survival rates are just 11% and treatments haven’t changed in 40 years.
Going forward I will continue to battle this terrible disease with a smile on my face. We have to stay positive and most importantly enjoy life and have a laugh.
– Kevin Fisher
Together we can #TackleBrainTumours.