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!
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…
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!
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!
Three years ago I had just completed cancer treatment. Sat in chemotherapy, in a very comfy Lazy Boy style chair, I had the idea of organising some form of hockey festival which could raise funds in aid of Maggie’s whilst also saying a massive #FUCANCER. Today, sat at my not-so-comfy office desk, I am in disbelief at how that idea has developed into a reality.
Yesterday marked the second STICK IT TO CANCER HOCKEY FESTIVAL. For the second year running we welcomed over 100 hockey heroes dressed as heroes and villains to unite in the fight against cancer. I am delighted to say that the event raised £2175.27 which will be going straight to the Maggie’s Cancer Centre in Edinburgh. A place very close to my heart. I don’t know if it is because I have neglected this blog for so long that my writing skills are very rusty or if it is the fact I am absolutely exhausted from an incredible 24 hours but I am struggling to find the words to share how much this event means to me. Instead I will share the video below (click where it says STICK IT TO CANCER 2017) to give you a flavour of what the day is all about and finish with these words:
“Together, ordinary people can achieve extraordinary results” – Becka Schoettle
Thanks for being a part of it…
All the teams and their supporters, friends and family who came along on the day! Edinburgh Academy & George Sutherland; Harry’s Bar & Ben Ashcroft; Luca’s at Morningside, Edinburgh Leisure; Scotch Whiskey Experience; Butterfly & Insect World; Scran & Scallie; Ryze; Cineworld; Pinkk; Stewart Brewing; Camera Obscura; Morrisons; Sincy, Batch, George & Kyle. Craig Muir. The THRIVING umpires, George & Grace. The SITC Top Team – Nicola, Christian, Amy, Jenny, Marie, Buggernuts & Iceberg. And finally, more poor husband Funny Boy for putting up with me everyday!
In hindsight my previous blog, although well intended could cause concern. I neither need, want or seek sympathy. The insight (or overshare) was aimed to encourage women to prioritise their health. My frustrations lie in the fact a high percentage of people are not doing this and therefore putting themselves at unnecessary risk.
Aside from the aforementioned side effects, which I am mastering daily, life continues to treat me well. Even now I am sat next to the pool with a view of Spinalonga which just so happens to be the subject of my current novel, The Island by Victoria Hislop (highly recommend it by the way). This sunny retreat comes at the end of a very busy few months and therefore not only feels deserved but essential! In my last update I was training for the Virgin Money London Marathon. It is with great pride I can share that I completed this in April and raised £4000 for Cancer Reaearch. A month after crossing the finishing line I flew to Toronto to visit my brother who I hadn’t seen since the wedding. Alongside the Funny Boy and Gags’ girlfriend, Katie, the four of us (dubbed the new Wolfpack) ticked off another item of Project 30 and enjoyed several ‘proper NYC breakfasts’ in the city that never sleeps. Whilst overseas I recieved the welcome yet unexpected news that I had been shortlisted and selected to win the Edinburgh Evening News Bravery Award. An accolade I don’t believe I am worthy of but delighted and grateful beyond words. The start of July would see the inaugural STICK IT TO CANCER hockey festival. An idea I had whilst sitting in chemo two years ago finally came to fruition after nearly 14 months of planning. Over 150 people united in various superhero outfits to say an almighty #FUCancer. The result of everyone’s efforts was a phenomenal £3700 raises for the Edinburgh Maggie’s Cancer Centre and another big tick for Project 30!
Baring in mind the Funny Boy and I moved house at the end of November by the time July came it had been a manic few months. I had promised two months of no ‘extra curricular activities’. No marathons, no fundraising, no more bonkers ideas for two months. However, this changed when I had an opportunity too good to miss. Hidden from public view and in line with Project 30 I was looking for the next step in my career. An opportunity arose and after speaking to my counsel (the ever reliable Iceberg, Buggernuts and Funny Boy) they urged me to go for it! A new job in an exciting role with fresh challenges lie ahead of me. This does mean I am extending my ban on extra curricular activities until at least Christmas. But, with my new job, hens, weddings and a reunion of the Wolfpack on the cards I doubt I’d have time to get much done anyway.
Life is great. Yes, it has its challenges but I am one of the lucky ones who continue to thrive!
Hello old friend! Apologies for the delay – I could sit and list the excuses of why I have neglected you but to put it simply: life got in the way! Several people have asked when I would get back on the FUCancer wagon and update my blog. To this I always reply ‘when I get the urge’. I must admit I didn’t think that moment would occur whilst sat on a sun drenched Cretan balcony on day 1 of a holiday which has felt long overdue.
So why the sudden need? What did I find so compelling that I allowed myself to be dragged away from the turquoise view and honeysuckle scent? The shocking news that attendance at cervical screening is at its lowest in 10 years! http://www.bbc.com/news/uk-scotland-37285353 (Yes, I admit that checking BBC news whilst on holiday is not the best way to relax and unwind) But seriously ladies? Have a word with yourselves! As someone who ALWAYS attended screening when invited I find it really difficult to understand why someone would neglect it. The fact is Cervical is one of the few cancers which can be prevented and if caught early has a high survival rate. I can only assume the reasons or excuses people use to put off a potentially life saving check up which literally takes minutes. Opposed to my ranting it would perhaps be more helpful if I gave an insight as to what life is like for me now as a cervical cancer survivor:
– Radiotherapy literally killed my ovaries which catapulted me into an early menopause. Alongside hot flushes, mood swings and difficulty maintaining a healthy weight, it also destroys your libido!
– Imagine someone kicking your lower back which after a while leaves a dull ache. That is the pain I have had on and off for the last two years since going through treatment.
– Another fun side effect of treatment is how on some days I just need to walk the dog and it feels like I’ve ran a marathon! My energy levels are unpredictable, unreliable and on occasions: unavailable!
– The menopause, the pain, the fatigue I knew I was singing up for it. The doctor makes you sign several documents to show you understand and accept that cancer treatment has devastating consequences. However, it was only recently I discovered it is now impacting my oral health. Two fillings & two extractions in the last 6 months which is largely a result of the change in my saliva. The change is a result of what? Chemotherapy and my hormone imbalance thanks to menopause.
– It is not surprising that cancer also had a negative impact on my mental health. Low confidence, panic attacks and stress have all come and gone over the past two years. Without the support of Maggie’s I dare say it is something I would still be struggling with.
– And for those who need it spelling out, the worst of these side effects is the fact I can’t have children.
So – there you have it! I would not wish my experience on my worst enemy. How many more reasons do you need to prioritise your smear? Protect yourself. For FUCancer sake – get it done!!
Today marks the end of Cervical Cancer Prevention Week but as one calendar month passes a new one begins which means it is only 12 weeks until the London Marathon.
Training is going well. I won’t bore you with the details but I can disclose that I now share something in common with Paula Radcliffe! Thankfully it wasn’t on the roadside but I did find myself hiding amongst bare trees hoping to not be seen. I suppose it is a combination of bowels behaving badly and getting used to those long runs again! Fingers crossed its not a regular occurance!
Anyway – back to the marathon. To aid with training I will be participating in Cancer Research’s SnowFlake 10k Run. I got the opportunity to help with the promotion at the start of the year, the links of which can be found here. Since the article I have had my heart set on running the 10k and more importantly the marathon in fancy dress! Initially I thought it would be a great opportunity to dress as something to raise awarness of cervical cancer. After a quick google search it appeared that the logistics of dressing up as a cervix would be too complex – if not impossible! Top Tip: do NOT Google cervix fancy dress!! So, if you have any suggestions as to what I can dress as for the London Marathon please let me know…
In the meantime if you would like to help beat cancer sooner please consider sponsoring me at the link below: