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.
It’s been one week now since I left hospital and I am not due to meet my neurosurgeon until the middle of next week. Excuse the pun but I still can’t get my head around it – I have a brain tumour! Even the fact I will be having an appointment with a neurosurgeon is something I thought I’d never have to say. The only neurosurgeon I’ve ever been interested in is Derek Shephard aka McDreamy! Fingers crossed my guy is as good as the fictitious character from Grey’s Anatomy.
So what do you do when you receive devastating news and all you can do is wait?
Well this is my second time dealing with this kind of news and I do think I have learnt from my previous experience. I would not wish it upon anyone but should you ever find yourself in a similar situation here are a few tips which have got me through the past week.
I am so lucky to have a solid support system. For those who have followed my blog since my experience with cervical cancer you will be familiar with the top team of Iceberg, Buggernuts and the Funny Boy. I’m delighted to say I have an additional side kick this time and that is my miniature dachshund Parsnip. Since being diagnosed she has barely left my side – even in hospital she came to visit me twice a day. This support system also includes my AMAZING friends who have driven across the country to be with me, took responsibility for breaking the news to others and even gifted me their final can of Irn Bru with the original recipe! So identify your support system, use them and remember like a good bra they are there to lift you up, make you look better and never leave you hanging!
Practise Self Compassion
There are a lot of thoughts and emotions being processed. I am also experiencing major paranoia: ‘is it the fact I’m simply forgetting things due to stress or is it my brain tumour eating my memory?!’ The best thing to do is be selfish – or to put it another way – practise some self compassion. I know from experience how crappy cancer treatment can make you feel so in anticipation I have allowed myself to do the things that make me happy. For me this has largely included surrounding myself with friends and family, enjoying the sunshine, BBQs and kayaking! Lots of kayaking! Find what makes you happy and do it!
Allow Yourself To Be
I have been overwhelmed with messages from family and friends telling me I am strong – I will indulge my ego and agree. But being strong for me is knowing ‘it’s ok to not be ok’. For the large part of the last week I have felt upbeat – but there are moments when fear creeps in: When I wonder what the future holds. When I lie in bed scared to close my eyes in case I wake up to find a room full of paramedics again or worse. So how do I cope? I allow myself to feel those emotions and I talk about it. I confide in the Funny Boy, I prioritise a trip to Maggie’s and if necessary I have a little cry. Inevitably I always feel better after allowing myself to just be and letting off some steam.
Anyone who knows me will tell you I am a planner. The weekend before my diagnosis I was updating my various calendars and realised I was not due to have a weekend free until the 14th July! As someone who loves my job this isn’t as intimidating as it might sound but it did highlight my work/life balance was maybe off-kilter. To go from jam-packed diary to being signed off work for at least a month is unnerving especially when it easy to allow negative thoughts of cancer to occupy your time. My remedy? Make plans for the short and long term. So next week the Funny Boy and I are booking that table at the restaurant we really like, we are having a spa day and – health permitting we are planning some day trips with Parsnip. Equally as important we have picked up some travel brochures and are planning our next overseas adventure!
On that note – I hope you have some great plans for the bank holiday! Thanks for reading and as always #FUCANCER!