Category Archives: FUCancer

Keppra Rage

As we have done in the past I’ll be leaving the Funny Boy in charge of the updates whilst I undergo surgery. He is under strict orders to not return my mobile phone to me until the morphine has fully left my system. Those who received texts from me in the immediate days post-surgery will be aware that I was not fully compus mentis. I think the worst was sending over 100 consecutive messages in a WhatsApp group  at 2am. I was busy telling my friends how hungry I was, begging for pictures of food porn and sending  a screenshot of a Wagamamas order worth over £50!! Me on morphine is not a good combination.

I am squeezing in this last-minute blog as I fear the Funny Boy will take advantage and share a particular story about me that occurred recently. Before I begin,  I would like to add the caveat that one of the more prominent side effects of my anti-seizure medication is  a risk of becoming aggressive, agitated or angry.  Or as my surgeon describes it: Keppra Rage! I am sure the Funny Boy will vouch for me when I say that 9 times out of 10 I am pretty laid back and excluding the odd occasions  I don’t have a grumpy  personality.

The Story

In October, the Funny Boy whisked me away to the very pretty city of Durham. On arriving at the hotel we went straight to the pool before returning to our rooms to prepare for dinner. As we change our clothes the Funny Boy walks out of the bathroom and looks  at me with a perplexed expression.

’Oh no!’ He cries ‘Look at my pants!’

I look over to see the Funny Boy still wearing his pants but with his Crown Jewels hanging neatly below his crotch.

‘I can’t believe it’ he continues ‘How has that happened? I haven’t even worn them –  I’ll have to return them!  They are my nice new ones you bought me!’

’What?’ I quickly reply ‘No, they can’t be!’ While he is trying to understand how his nice new pants have been so ill-fated,  I  silently pluck up the coverage to tell the Funny Boy the truth…

The Truth

A few months ago,  I decided to invest in an electric toothbrush. To which the Funny Boy made a number of snide comments basically stating how he thought the amount paid was a waste of money.  His attitude changed when he visited our dentist – who knew of my recent purchase and suggested he just get a separate toothbrush head and benefit from  it’s many features. Being a  good wife, I overlooked is sarcastic comments and kindly obliged, providing he  ensured it was always clean and kept fully charged.

Allow me to set the scene: It’s approx 5 weeks post surgery.  I am experiencing  weakness and reduced sensation on the  left side of my body, the fatigue is ongoing and the Funny Boy has returned to work allow me to fend for myself. I wake up one morning and head straight to brush my teeth.

I walk into the en suite to find the Funny Boy has already forgotten the rules; he has failed to return my head to the toothbrush and  the battery is flat. This may not sound like a huge deal but for someone who has lost the dexterity in one of my hands  the simple task of changing the heads was turned into a major struggle. After a small wrestle I successfully removed the  brush  head. As it landed on the bathroom floor. I was in two minds to leave it there ‘that’ll teach him’ I thought’, but resisted the urge and set about putting the brush on charge for 5 minutes so I have enough ‘juice’ to finish my task. Feeling ever so frustrated I turn my focus on the toothpaste and my mood doesn’t improve when I see the Funny Boy has squeezed from the middle making it impossible to get the paste at the very bottom of the tube. Another battle between my reduced dexterity and the half empty toothpaste tube and I finally finished brushing my teeth. It is not even 8am and my anger level was sitting at about  5/10.

I get ready to take Parsnip down for her morning rituals (she sleeps in our bed – feel free to judge but I actually sleep better with my side) Anyway, as I walk down the stairs I walk past – not one, but two piles of the Funny Boy’s ‘stuff’ which he has awkwardly placed in the hall way and the middle of the stairway. Both of which he promised to put away the night before. The first pile is his clean clothes he has prepared for a weekend away to Durham. The second is a pile of card, paper cuttings, pritt-stick and scissors – leftovers from his latest craft project. Each pile is so large that tidying them away requires several journeys up and down the stairs. My anger level begins to rise. I do a number of legs to return the bits and pieces to their rightful place but in doing so I drop some of the pieces. As I pick up the final bits, stomp up the stairs and begin to curse the Funny Boy I realise what I am holding in my hands. In my  left is a pair of his boxer shorts and in my right is a pair of scissors.

I would like to say I debated what I did next but truth be told the rising anger took over and in a moment of rage I decided to cut the Funny Boy’s Boxers. With one simple cut I slashed the gusset and in an instant my rage was gone. ‘that’ll really teach him’ I thought once again. I’d like to say I thought about my actions and  instantly regretted them but that would be a lie. I returned his pants to the rightful place, set about my day in a drastically  improved mood and didn’t think any more on it.

Back to Durham

As I tell the Funny Boy what happened, rather than getting the rage himself he simply begins laughing, before a slightly worried expression comes across his face. He then recounts his changing room experience. He had dressed himself in the cramped conditions of the changing room while another patron sat on the bench Funny Boy crotch height, putting on his shoes.

The Funny Boy had a vague recollection of getting a strange look, as he unknowingly pulled up his Anne Summers inspired crotch-less boxer shorts, before drying his hair and continuing to get dressed.

What must this chap have been thinking?!  That the Funny Boy was some sort of sex crazed maniac loitering in hotel changing rooms, for an unsuspecting person to walk in and the opportunity to show off his ventilated undergarments?!

Recalling this is when The Funny Boy really started to laugh. We spent the next 2 days in Durham wondering if we might be ejected from the hotel for his efforts at Dogging, but thankfully it didn’t happen.

In the end the Funny Boy was just grateful that the scissors hadn’t been applied to his pants, while he had them on.

I should be back in a week but for now, wish me luck for tomorrow and as always #FUCANCER!

 

 

 

 

I agree, Mr Crosby

This week I spent an evening helping my mum  finish decorating  the ginormous Christmas tree which now sits in her living room. Once it was finished we settled down in front of the fire and put on a firm festive favourite, White Christmas. One of the many songs sang by Bing Crosby has the line:

‘When I’m worried and I can’t sleep
I count my blessings instead of sheep
And I fall asleep counting my blessings.’

Despite seeing  this movie countless  times, including a stage adaptation, I never realised how true these words are. Counting  my  blessings is  something I find myself doing  frequently.

A number of people – friends, family even my medical team often ask me ‘How do you cope?’ It is impossible and unrealistic to expect myself to not have negative emotions: Cervical Cancer at 27 was pretty harsh. Losing my fertility, being catapulted into menopause and managing the ongoing side effects has been a challenge too. Brain cancer four years later and  discovering not one but TWO tumours  with their own set of  life-changing side effects. It is a simple reminder that life sometimes is just not fair. That being said everybody faces hardship and  I doubt anyone will walk this earth  experiencing no form of heartache. Another sad truth is regardless of how tough I think I have it there will always be someone who is worse off.

So, how do I cope?  Three steps:

1. I have to accept that at times I do feel anger, heartache and fear.  As an optimistic person these feelings  – despite being perfectly natural – are somewhat alien and something I hate to admit.

2. More importantly,  I give myself the space to feel those emotions. I allow myself time to release whatever I feel rising inside. No sugar-coating, no BS just ‘how do I feel?’  My ways of expression take various forms – sometimes it can be as simple as a lengthy rant, a solid cry or even taking the dog for a walk on my own whilst mulling things over internally.  Once again Maggie’s have been an endless source of support. I prioritise a fortnightly visit which is where I do most of my emotional ‘dumping’. But for all of this to work I have learned  I need be honest. I have also found since I have started ‘allowing myself’ the space to be sad, mad or angry , the time required gets less and less. On some days a 10-minute rant about my frustrations is all that is required,  on others a 5 minute cry will do the job. A daily dog walk without my mobile phone is  probably my favourite way to achieve this which leads me onto the third and final step.

3. I always take time to appreciate the good things in life – or as Bing Crosby put it ‘counting my blessings’.  I regularly talk to Parsnip on our walks about how lucky we are. Yes, my health may not be great but I am blessed in so many other ways. It is through these blessings that I am not just ‘coping’ with cancer but I  actually enjoy life.

So to finish here are just a few of the blessings I am thankful for…

My surgeon and the whole medical team who make me feel supported, safe and grateful for the NHS. For the Maggie’s Cancer Centre in Edinburgh, and in particular  Yvonne, who I sometimes think knows me better than I know myself.

For friends who drive for over an hour at 9pm at night with a homemade lasagne so my family are well-fed whilst I’m in hospital. The Friends who insist on picking me up before our night out because they know how tired I get and want me to save my energy so we can enjoy ourselves. Friends who  send Christmas trees in the mail and organise  group Skype chats. Friends who write me an exercise programme  because they know how much it means to me but more importantly so I can exercise safely!

The neighbours we  call friends who  turn up at our door with plates full of roast chicken dinner and are always up for a game of UNO.

The colleagues who go above and beyond to make me feel included. Who have an early Christmas lunch so I can attend before my second operation .

For our lovely postman who took the time to introduce himself and offer his support.

For my amazing family  who simply do too much for me to even begin counting.

I’ll finish with the wise words of Mr Crosby and should anyone ask me in the future how I cope I’ll remind them to do the same:

‘So if you’re worried and you can’t sleep
Count your blessings instead of sheep
And you’ll fall asleep counting your blessings’

As always, #FUCANCER

Finding my voice

It is now 10 weeks and 5 days since I had my operation and I’m delighted to say I am feeling well. I finally feel I am able to manage my fatigue levels and mentally, I feel like I am back on top of my emotions. Overall my wellbeing is in a good place.

Yesterday I met with a Geneticist. Not everyone with a cancer diagnosis will be referred to the Genetics department. Almost 9 in 10 cancer cases in the UK are in people aged 50 or over. Being 32 I am still deemed as being ‘very young’ to have had three separate tumours and therefore I have been offered the opportunity for further testing.

These tests are specifically looking at my genetic make up to see if I have a mutated gene which could make me more susceptible to developing cancer. If this is the case, unfortunately it doesn’t mean it can be prevented but  it does  qualify me for more frequent testing and in case you didn’t know – Early diagnosis is key!

It is unlikely I will get the results before the Spring and the doctor explained that they offer psychological support which is good to know. At the moment I am getting all the support I need from my family, friends and the team at Maggie’s.

On Monday I had the pleasure of being invited to speak at the Scottish Cancer Conference as a Patient Representative. I used my 7 minute slot to share my experience of the past 6 months after being diagnosed in May. It was my first attempt at Public Speaking since surgery. For those who follow my blog you’ll be aware that my speech has suffered slightly. I am told by those closest to me that they barely notice the change now but internally I can feel myself labouring over certain words and the energy required to speak has definitely increased. The thought of speaking at a conference with  an eclectic audience of doctors, MSPs and specialists from a variety of fields should have made me cautious but if anything it just made me more determined to seize the opportunity.

I was part of the final segment which focused on cancers of unmet need – unfortunately brain falls in this category. To finish the afternoon the MC hosted a Q&A with the panel. The final question from the audience was  regarding  the future of research. I am not a doctor, a scientist or researcher  but I was offered the opportunity to share my view and I’d like to share it with you too:

’In 2014 I was given a life expectancy of  2 years. Thanks to the treatment I received I am alive today. All cancer treatments are a result of research. In the 1970s only 1 in 4 people were expected to survive a cancer diagnosis for  10 years or more – today that number has doubled. I am now in the midst of a second battle but i have hope and that is because of cancer research. Research saves lives.’

I unequivocally believe in the work of Cancer Research UK. They provide me and millions of other people touched by cancer the hope we so desperately need.

As always, FUCANCER!

Forth Awards

I am absolutely blown away on receiving The Forth Charity Volunteer of the Year Award yesterday. However, this is a HUGE team effort and a result of all the hard work everyone puts into STICK IT TO CANCER. Thank you to the committee, event volunteers, participants and supporters. This award is for you!

Thank you to all the people who took the time to nominate me. I can’t tell you how much it means to me.Big thanks to Forth for inviting the Funny Boy and I – we had an incredible afternoon. Many thanks to Gilson Gray for sponsoring the award. Congratulations to all the winners – we heard incredible stories yesterday which goes to show that through adversity amazing things can happen. I was left feeling both inspired and motivated to do more!

BRING ON STICK IT TO CANCER 2019 – I can’t wait! For more information on next year’s event please join the Event Facebook page by clicking here or email Heather at heather@fucancer.co.uk.

As always, #FUCANCER

 

The Ultimate Show of Solidarity

Five years ago today  the Funny Boy and I had our first date. We met at the hockey club quiz during a month I renamed ‘Yestember’ where I had to say yes to any opportunity that came my way. He took his chance and asked me out. Committed to Yestember I was forced to oblige. I remember telling my friends ‘he is really funny and has a lovely smile but it’ll never go anywhere. He is too short’. Was that shallow of me? Definitely, but thankfully  l was  wrong.

It was 6 months after our meeting that I was diagnosed with cervical cancer. By any usual relationship standards we should have been contemplating our first holiday together – not negotiating the rigorous schedule of cancer treatment. I thought we were over. I told the Funny Boy I didn’t expect him to stay and I understood that this meant the end for us. ‘Who in their right mind would want to stick around for this?’ He proved me wrong again.

For those who follow my blog you will know that I refer to the Funny Boy as my  non-conventional knight in shining armour. He is my haphazard hero and last week was another fine example.

The Funny Boy was with me as I had my first full clonic-tonic seizure which led to my diagnosis in May. Since then he has barely left my side and therefore he has missed more than his fair share of nights out with the boys. Last Saturday his colleague was having a  ‘leaving do’  and coincidentally I arranged to have dinner with friends. With both of us feeling healthy we set about our separate plans.

Following my meal with the girls I returned to find the Funny Boy asleep on the sofa. He had a faint smell of beer on his breath but seemed relatively sober considering it was his first night out in over 5 months.

I prepared myself for bed when I began to feel unwell and I immediately blamed the mussels I had for dinner.

As the night went on an aggressive episode of vomit and diarrhoea ensued. It had been several  hours before I woke the Funny Boy and asked him to phone NHS 24 – a number we should  have on speed dial by now. Recognising a hospital visit was on the cards the Funny Boy felt the need to sober up. As I was draped across the en-suite  regretting my food choice the Funny Boy  drew himself a bath.

The sickness worsened resulting in a seizure and the Funny Boy  called NHS 24 again who dispatched an ambulance immediately.

By this point it was nearly 6am and despite vomiting consistently for  6 hours there was no sign of respite.The Funny Boy sat across from me in the ambulance and as I paused to take breath I realised something was wrong.

Normally the Funny Boy is the type of guy you would welcome  in an emergency. Always composed and a pragmatic thinker he never seems to panic. But on this particular journey – our third ambulance trip this year – the Funny Boy didn’t look like himself; his hands held a firm grip on his knee caps – so much so his knuckles turned white. His face held a yellowish complexion and as I looked closer his nostrils were dilating larger than usual as he took a series of long, deep breaths. His eyes were focused on a fixed point in front, he barely made eye contact with me.

’He must be REALLY worried’ I thought ‘all the stress I have put him through and this is the straw that has finally broken the camel’s back’. I broke away from my train of thought to vomit for what felt like the hundredth time.

When i turned to look at him again I noticed that he had also been armed with a cardboard bowl.

Before I had time to reach out and ask ‘Are you ok?’ The ambulance hit a speed bump which triggered the Funny Boy to projectile vomit into the bowl he held in his lap. With the blink of an eye, his bowl was full to the rim and began to spill across the ambulance floor.

The paramedic sprung into action and called to her colleague in the driving seat; ‘You’ll need to stop’ she shouted ‘the husband is being sick now’.

As quick as the ambulance came to a halt, the paramedic opened the back door to allow the Funny Boy out for some fresh air. He continued to be sick  whilst she (the poor paramedic) began to wretch. Strapped to the stretcher inside there was little I could do.

The Funny Boy and paramedic returned to the ambulance. The paramedic mopped up the Funny Boy’s sick which had sloshed all over the ambulance floor.

The embarrassment continued when we  were met with familiar faces in A&E.  As the doctors and nurses began a series of tests the Funny Boy excused himself. One of the nurses greeted  him in the waiting room ‘I remember you. You fainted the last time.. That’s  some scar you’ve got… You’re looking worse than your wife tonight’

He insists his sickness was caused by a tummy bug. I am dubious and believe the afternoon spent drinking might have had something to do with it. Or perhaps it was just the ultimate show of solidarity?? Either way between this and the Funny Boy’s spectacular fainting episode we have earned ourselves a reputation with the A&E staff at St John’s.

Fingers crossed we won’t be returning anytime soon!

#FUCANCER

The chance to do more

I am delighted to report that I am back home and reunited with my ever faithful sidekick Parsnip.

After much deliberation by the medical team I have returned  with my appendix. The risk  of seizures coupled with the damage caused by  pelvic radiation makes my case a complicated one. I am due to return to the General Surgery team in the new year to discuss an appendectomy  in more detail but for now my next surgery is Craniotomy #2.

In 2018 alone  I have spent 20 nights in hospital, relied on 3 ambulance trips, benefitted from numerous appointments across a variety of specialities and been supported by a countless number of nurses. At this point, may I say I have NEVER met a harder working group of people than the NHS nurses; 12 hour shifts which  include everything and anything from cleaning a range of body fluids, literally picking people off the floor, drying tears and so much more. I do not know how they do it but I remain in awe of their energy, empathy and ability to make the worst of times somehow better!!

Today is STAND UP TO CANCER. The Funny Boy and I were due to  attend the Live Show in London but due to my recent bout of illness we were forced to cancel. It is only when you are faced with a chronic condition you appreciate how frustrating and devastating  it is to be constantly losing  out on opportunities and experiences. From the everyday things like meeting a friend for coffee, singing in your car at the top of your lungs or playing your favourite sport with your team mates to the life changing events like starting a family or going for that promotion at work. These are the things that make life and when you miss those it is hard not to  feel like you are missing out on life.

Everyone faces challenges in their life but as long as you have your health you always have an opportunity to start again. This is the second time I feel my life has been put on hold as a result of badly behaving cells. In 2014 cancer stole my fertility; something  I may never truly ‘get over’ but I am slowly coming to terms with. The struggle I am facing now is  a loss of independence and an underlying fear of the unknown.  It is hard and I would be lying to dress it up as anything else. Equally, I know things could always be worse.

Never, ever take your health for granted. For as long as you have it you always have the chance to do more!

#FUCANCER

 

FU Appendicitis

You won’t believe me – I can barely believe it myself but 6 weeks after my craniotomy and approximately 6 weeks before I am due to return for my next one I am back in hospital.

After another ugly episode of vomiting and diarrhoea which led to a seizure (due to dehydration and lack of sleep) I found myself in the back of an ambulance for the third time this year!  A few hours in AnE with very vivid hallucinations of Parsnip and a Funny Boy who was not feeling his fittest (more of that to follow in the next blog) I was admitted. A series of tests confirmed appendicitis.

Due to my existing health concerns the doctors are calling my case ‘complicated’. Usually I would be heading straight for an appendectomy but with a risk of seizures I am currently on IV antibiotics and under observation whilst they decide the next steps

So, how am I feeling?

Homesick, fed up and sick of being ‘sick’ if that makes sense. Literally being thrown one curve ball after another… Get me home to Parsnip please!!

As always #FUCANCER and for today #FUAppendicitis

Not Knowing

On Wednesday this week I attended a spa day at the gorgeous Fletcher’s Cottage Spa at Archerfield in North Berwick. The day was specifically tailored for people with cancer and included a session which focused on mental wellbeing. I never thought I would find myself walking bare foot, lying on the grass and staring at a blue sky in 20 degree sunshine  in Scotland, in October! It was complete bliss and fully funded by the Made For Life Foundation – if you or someone you know is affected by cancer I would recommend looking them up!

Wednesday also happened to be Mental Health Awareness Day. I have always vowed to maintain an open and honest blog. Admittedly I have been somewhat silent over the past few weeks and a large part of that is because of how I am feeling. It has been over two weeks since we got the third dose of bad news. I am  slowly coming to terms with the fact that this diagnosis is likely to be something I will have to live with for the rest of my life and that prospect is not a welcome one.

On paper nothing has changed for the foreseeable. We know I have more scans ahead, another operation and inevitably  a discussion about chemotherapy and or radiotherapy. But it is the ‘not knowing’ which I find challenging.

Whilst at the spa day, I had the pleasure of meeting other women who are all cancer survivors. Naturally we got chatting and I found myself saying something I hadn’t realised until the words came out my mouth:

’…before I was diagnosed I had this blissful ignorance that I would live forever – you always assume you can ‘do it in the future’ but right now even planning next year’s holiday seems like a fantasy…’

Despite being in remission for four years  that blissful ignorance never returned and thanks to these (excuse the language) b*stard gliomas , I  doubt it ever will. I miss that feeling so much:  the luxury of limitless plans of what I can do and the dreams of what I will achieve.  Don’t get me wrong: I have plans, big plans,  but right now I can’t help but feel a little  envy towards my peers who have the ability to  make them happen now.

For me, life feels like it is on hold and as I do my best to make peace with the ‘not knowing’ I do have days where it is a struggle. At times, it is simply overwhelming.  My mind frequently races forward to the day where I’ll receive my next round of results and as it does I imagine every possible outcome. Today  I spent 2 hours picturing  those thoughts whilst simultaneously  trying to rationalise the tingling in my left arm and a racing heartbeat. I genuinely thought I was having a heart attack!  In hindsight, I think it was a mixture of the sensation gradually returning in my left side and stress. I suppose given the circumstances is to be expected.

I am an advocate for the phrase without mental health there is no health and with more surgery on the horizon I know how crucial it is to nurture my mind and body over the coming weeks.  Nurturing my body is the easy part but my mind will require more effort! I have already identified a few techniques which definitely work for me such as taking time away from my phone and practising sleep hygiene. But I do accept this area of mental wellbeing is something I need to work on. As always, the team at Maggie’s have been on hand to provide some practical advice and I have a few new techniques I intend to try. They say practice makes perfect so  wish me luck and watch this space!

On a separate note I just wanted to apologise for the radio silence – particularly  to everyone who has reached out via messenger, text or post!  Please do not think I am ignoring you. Your thoughtful gestures and very kind words are not only hugely appreciated but act as a source of great comfort. The Funny Boy, Parsnip and I have been shown so much love and support over the last 6 months and I can’t tell you how grateful we all are. Now I am beginning to feel stronger I hope to see you soon. THANK YOU x

As always, #FUCANCER

*Sleep Hygiene is another valuable lesson introduced to me by the team at Maggie’s. Unlike the name suggests it is nothing to do with the cleanliness of your bed sheets  but techniques to improve sleeping.  If you are a bad sleeper or like me go through phases of insomnia I’d highly recommend reading about   It at  the link below:

Sleep Hygiene

 

Humble brag

On review of today’s vlog I believe i am guilty of ‘humble-bragging’ – please see the definition above! Anyway, after a frustrating week awaiting results which then brought more ‘not so good news’ i have resorted to my coping mechanism of focusing on the positives and reminding myself of all the things to be thankful for.  So, please excuse the boasting post…

#FUCANCER

 

Awaiting results

 

This is my first attempt at a proper vlog since surgery – slightly slurred speech, an incorrect date but as always – honest and unfiltered!

Following last week’s news which left us all feeling a little shell-shocked – I would say I was still coping remarkably well.  The funny boy and I have learned to keep looking to the future, making plans but equally important is we take pleasure in the ‘here and now’ and that is why everyday we find some form of enjoyment – be it time with the family, or making our favourite meal – it is a good way to remind us that life is good and there is always something to be thankful for.

Today has been especially  hard. I was scheduled to receive a phone call from my surgeron to discuss the pathology report which we originally were due to get last wednesday. These results will ultimately tell us what type of tumour I have and therefore indicate whether I might still need chemo  or radiotherapy in the New year.  As you can imagine my surgeon is a very busy man and between his many patients and a delay in the actual report arriving I am still yet to receive my results. The waiting is nothing short of exhausting. The ‘not knowing’ is simply draining but this is life with cancer.

I am hopeful tomorrow will bring more news so I can update for FUCANCER FRIDAY!

As always #FUCANCER