I frequently nag the Funny Boy for over-indulging in Sky Movies and Box Sets. He is a big fan of America’s Next Top Model whereas I couldn’t care less. I believe I could easily live without TV but, as he regularly reminds me, I am guilty of nurturing an addiction to social media. Anyone who follows my instagram will be all too familiar with pictures of Parsnip and I dare say anyone who is a friend on Facebook and Twitter will know what SITC stands for.
For me social media is a necessary evil. It allows me to keep in touch with friends far and wide, it permits me to promote my fundraising plans and I am pretty sure it is how you (the person reading this now) has come to view my blog. It’s all promotion of some sort, and like many others I am very guilty of only portraying the bits I like. Take the most recent Festive Season for example. You’ll easily find the photo I shared of me on New Year’s Eve when I’m dressed to the nines with a full face of make up but you will struggle to find the pic of me on Christmas Day when I was fighting the flu.
When I started this blog four years ago I described it as being a ‘brutally honest insight’ to what life is like living with and beyond cancer. Granted, I didn’t think I would be dealing with a second diagnosis but the sentiment remains: I want to be honest.
It has been six weeks since I was diagnosed with a brain tumour. Although I continue to be very open with my words – I have carefully selected when to ‘vlog’. This has largely been dependant on when I have thought tentatively about what I want to share and timed to ensure I have mascara on and at least some decent lighting.
It is all too easy to share the pictures when I am on top of the mountain or kayaking with a postcard-perfect view in the background but revealing the down days that #FUCANCER brings is a challenge. I don’t need pity or sympathy, nor do I seek it. But I do want to provide insight so hopefully people can understand the emotional roller coaster cancer takes you on. More importantly, I want it to provide hope to others who are facing a challenge. Be it cancer, mental health or whatever. You are not alone.
So the vlog below is exactly what I hoped my blog would be: ‘brutally honest’! No make up, no notes, no agenda. Just exactly how I am feeling. A little scared, very vulnerable and unsure of what the future holds.
Celebrating a small win today – first time out walking ‘just the two of us’ since I had a seizure and discovered I have a brain tumour. Still in cancer limbo but refusing to let it hold me back!
Before I begin I thought I should provide some context. Over the years the Funny Boy and I have fundraised for Cancer Research UK and the Maggie’s Cancer Centre in Edinburgh. Never one to shy away from a free T shirt and with a strong dislike of waste, the Funny Boy always makes use of items within his possession…
It has been a particularly emotional start to the week. A trip to the GP, long chat with the epilepsy nurse and a huge list of cancer admin has left me feeling – how can I put it? Lousy? Crappy? Simply bleurgh!
The GP was great and after a long chat (well beyond the allocated 10 mins) she reiterated the advice Maggie’s offered: take more time to process everything; try to focus on facts not thoughts; don’t feel guilty and practise self compassion.
Likewise the epilepsy nurse was very helpful and after explaining the cause and effect of my seizures she offered more practical advice. Just to be clear I have a non epileptic seizure disorder which is a symptom of the tumour in my brain. This conversation did result in more ‘Cancer admin’. Cancer admin is what I am calling all the forms to complete, appointments to fulfil and general to do lists caused by the tumour. I don’t recall cervical cancer causing this much paperwork! One of the tasks on my list is surrendering my driving license to the DVLA. Goodbye independence! Hello bus pass! So after ploughing my way through all the necessary cancer admin I was suitably grumpy by the time the Funny Boy arrived home.
As always he practically skipped through the front door looking for Parsnip and I. We, Parsnip and I, are very rarely apart – I like to call her my sausage shaped shadow! Anyway, I debriefed the Funny Boy on my day. I shed a wee tear, cussed a LOT and by the time I finished my emotional dump the Funny Boy had miraculously put a smile back on my face!
So, I decided to follow doctor’s orders and practise some self compassion by drawing myself a bath. However due to being high risk of seizures I can no longer do this alone – it’s not as sexy as it might sound! The Funny Boy didn’t join me but he did pop his head in or call out to check I was ok every few minutes. Not ideal and definitely not as relaxing either! After my bath I came downstairs and picked up a mindfulness colouring book which was gifted to me by my brother and sister-in-law to be.
I caught myself moaning this weekend. I said to the Funny Boy that I feel alone and like nobody understands. He never challenged me on this. And as I settled down to start ‘Colouring Weiners’ with my own wiener cuddling on my lap I looked at the Funny Boy playing his Xbox and realised I was wrong. I don’t know if he did this on purpose or if it was his subconscious – in fact I’m not sure he was even aware what he was wearing – but either way he is right: TOGETHER WE ARE FIGHTING CANCER and I am beyond lucky to have him!
Vlog #2 – A few highlights of saying FUCANCER whilst stuck in limbo. Feel free to send me your song suggestions!
I have cheated this week and opposed to blogging I have decided to try my first vlog. There is definitely room for improvement but hopefully it gives you a little insight on what life is like in cancer limbo – that awkward place between being diagnosed and waiting for more tests to decide what is happening with treatment…
As always #FUCANCER
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.