On Wednesday I met with the specialist to review the results of my scans. Following his advice we have decided to go ahead with surgery in September which will aim to remove as much of the tumour as possible. Due to its location this comes with inherent risks which could lead to long-term impairment physically, sensory and visually. In an attempt to minimize these potential side effects the surgeon will be performing an awake craniotomy. If, like me, you are a Grey’s Anatomy fan then you will know what this entails but as the name suggests – they plan to wake me up mid-surgery. In doing so they will ask me to perform certain tasks so they are able to remove as much of the tumour as possible without impacting the surrounding areas.
As the reader I am sure you will find it a lot to digest. Major surgery… on your brain… whilst awake! Crazy hey?!
So, how do I feel? In all honestly I feel very calm. After an hour long appointment with the surgeon where myself, the Funny Boy, Iceberg and Buggernuts asked many questions I left feeling strangely at ease. This is the most relaxed I have been since having the seizure and I think it is because knowledge is power! It’s cliché but it is true! I hate life in limbo – the not knowing, impossible to plan, unable to see my future beyond the next few weeks is difficult. At least with this I now feel like I know what I am up against over the next few months.
Many of you have already been in touch asking how you can help. So here are two things I need from all my family and friends..
I want to make full use of all my abilities whilst I can so over the next few weeks I want to do as many fun, active, outdoorsy things as possible. Particularly if they are things I have never tried before. I will be using my annual leave before surgery and hopefully making some trips – so, if you have any suggestions and would like to join in please let me know.
I want NEED you all to PROMISE me that if my motivation drops or changes when I come through surgery that you will remind me of how stubborn, determined and able I really am! You have full permission to kick me up the butt!
I am not one to dwell on things, I am looking forward and I would strongly encourage you do the same too. Before I draw this entry to close and head off to play hockey, I have a secret obsession with Winston Churchill – what a man, what a life! He has a wonderful way with words so I will finish with one of his many, famous quotes:
Success is not final, failure is not fatal: it is the courage to continue that counts!
I met with the neurosurgeon on Wednesday. It was a very different experience than when I first met my oncologist. When I met my oncologist she was very direct and came to the appointment armed with a clear plan of how they intended to treat the tumour in my cervix. I was prepared for a similar style meeting – I had planned a list of questions largely focusing on treatment, side effects, timescales etc. But this appointment was very different.
Any treatment – regardless of where it is targeted – comes with it’s own set of risks and repercussions. But it is only now I am beginning to fully appreciate how complex an organ the brain actually is. Treatment in such a delicate area and the side effects are all the more acute. A lot was discussed and it has been a huge amount to take in. The anti-seizure medication alone warrants its own set of side effects, one being ‘rage’ – not the best news for someone who’s nickname used to be Ragebox! (Watch out Funny Boy!) The situation is far from straight forward and each option has a range of potential risks and benefits. Decisions need to be made and in order for those to be thought through thoroughly more information is required. I struggle to decide what to wear on a day-to-day basis so this is going to be tough. For now we are taking time to do more tests, time to review our options and time to decide our plan of attack.
So how am I feeling?
My good friend put it best when she said ‘Cancer f*cks with everything’ and on this occasion I have an extended list of life admin as a result of my new diagnosis. I spent today drawing up a spidergram to help manage the tasks within my control. I feel completely unprepared for how life is going to change. I am trying hard to pre-empt and where possible minimise these changes but already I am feeling a loss of independence – the luxury of being able to drive wherever and whenever I want is something I definitely took for granted. My poor dad is definitely feeling the strain as chauffeur – not because he hates driving – because he can’t listen to the cricket when I’m in the car!
I haven’t had a big emotional break down yet. Despite glassy eyes on several occasions I have managed to keep all tears at bay but this is not to be confused with me ‘putting a brave face on’! Believe me – I have the best support system who are actively waiting, encouraging, hoping I’ll cry! But the reality is it still doesn’t feel real and despite breaking the news to friends and family I don’t feel like this is happening to me. I don’t feel scared for what lies ahead I simply feel unprepared.
In the early hours of Wednesday morning I woke up to find 3 paramedics in my bedroom. The Funny Boy had called 999 because I was having a seizure. I don’t remember this clearly. Even sat in the ambulance I found myself struggling to remember what I had done the day before or even recall my boss’ name. As soon as I arrived at AnE they prepared me for a CT scan which required a cannula.
Having a cannula is a familiar process for me and one the Funny Boy has witnessed thousands of times. However, the shock of seeing me have a fit and perhaps the early hour took its toll on my poor Funny Boy – as he slowly let go of my hand and proceeded to headbutt the X Ray machine I watched him plummet to the ground. He had fainted. This was enough to send me over the edge and as I cried out for him, the nurse called out for assistance. Our bay was quickly filled with more staff and a doctor eyeing up a pretty spectacular cut above the Funny Boy’s left eye. As the Funny Boy regained consciousness the doctor said ‘I think you’ll be leaving here with a few of my sutures…’ – he was right! Before I knew it the Funny Boy was lying in a trolley next to me with four new stitches and a pretty impressive black eye!
Unfortunately my treatment wasn’t quite so simple. The CT scan identified a lesion on my brain and as a precaution the hospital staff didn’t want me to leave until I had a MRI. I was transferred to the Observation Ward whilst I waited.
Life can be pretty bizarre sometimes. For example, a fortnight ago I was stood at a Ladies Lunch in front of over 460 people sharing my experience of cancer. Within that speech I actually said ‘my life is in a pretty good place’ and that’s because it is. As a Fundraising Manager for CRUK I have a job I am very passionate about, I have recently completed my first full season back on the hockey pitch, i am feeling fitter and stronger than I have in years and to top it off I not only have the BEST collection of family and friends but an awesome sausage-shaped sidekick too.
So, to be sat here breaking the news that I have a new cancer is unexpected to say the least. On Friday the MRI confirmed I have a tumour in my brain. Thankfully, I have been allowed to return home whilst I wait for my referral to Neurology. I don’t know how I feel at the moment – more than anything I can’t believe how unlucky I am! On a lighter note, at least I look a lot better than the Funny Boy… Fingers crossed his fainting episode was a one-off!