All posts by Hevewilliams

Don’t Stop Me Now

Surprisingly, our team didn’t take home the title of Best Dressed but we did win the Wooden Spoon!

Funny Boy here, I felt compelled to step in and write a blog because I don’t think Heather will reveal what happened last week…

It has been a very busy summer for Heather. Not satisfied with organising the annual STICK IT TO CANCER (SITC) tournament, she took on the challenge of organising 2 additional events.

In between the hockey festivals we flew to Canada to celebrate the wedding of Heather’s brother, Gareth and the lovely Katie. It was an incredible trip and we returned refreshed, if slightly jet lagged.

We arrived at 9am on Monday morning and from the moment our flight landed Heather opened her TO DO LIST for the final Stick It To Cancer tournament.

Heather works on STICK IT TO CANCER throughout the year. She has a GANTT chart, a mood board and is constantly considering new opportunities to improve the event and ultimately raise more funds. I, too had been preparing for SITC – My preparations started about 6 months ago.

For those of you who are unfamiliar with SITC, it is a fancy dress hockey festival. The tournament offers prizes for the Champions, Best Dressed and Spirit of Stick it. Determined to be a contender for Best Dressed I decided to dress as one of my all time heroes – Mr Freddie Mercury. In order for it to be convincing I knew I needed to grow a beard for the sole reason of having a real moustache. So as of January my prep began.

I knew Heather wasn’t fully on board with my new look. As Gareth’s wedding drew closer she said to me “the photos from the wedding will be around a long time, are you sure you want to look like that?”

I considered what she said, but while Heather had been making spreadsheets, recruiting volunteers, contacting donors and managing social media I had been doing my prep; pushing the follicles out of my face was hard work.

The eve of STICK IT TO CANCER arrived. Heather and I woke early with a busy schedule of moving equipment, setting up the pitches and one final shopping trip. When we finally arrived home I knew we wouldn’t be going out again. I decided it was time to kiss the beard goodbye and style my Mercury moustache. I stole Heather’s mascara and blackened my new tash and eyebrows. It’s fair to say the results were ridiculous; My hair bleached blonder than usual from my two weeks in the Canadian sun contrasting with my new matt black moustache and eyebrows.

The preparations were complete and Heather seemed happy so there was nothing left to do but relax. We snuggled up on the sofa with Parsnip and put on the TV.

All of a sudden Heather sat up and repeatedly told me she felt dizzy. She was conscious and talking but as she got up to walk her coordination was missing. She continued talking but nothing she said made sense. It t took me a good few minutes to realise that Heather was having a seizure.

So it is 11pm on the night before SITC and I had no choice but to take her to hospital.

It took Heather about an hour before she started to feel better. She couldn’t remember how she got to hospital or indeed anything in between.

As usual the staff at St John’s hospital were amazing. They spent a few hours performing various tests on Heather. As she started feeling better and began to realise what day it was Heather quickly focussed on the hockey tournament (which was due to start in a number of hours) and started pleading with the doctors to let her go. SITC is arguably one of the biggest days of the year for us, Heather was desperate to be there.

Heather has a team of amazing volunteers and a committee that help with planning the tournament, but she is responsible for a lot of what happens on the day.

I had the startling realisation that if I had to lead the event on her behalf then the only work I had done was growing a moustache. This leads me onto another point: Once again I am back at St John’s hospital in the early hours of the morning supporting Heather. This Accident and Emergency Department is now the scene of just a few of my less-than-proud moments; passing out and cracking my head open was pretty spectacular and on another occasion I vomited all over the back of an ambulance. The staff seem to remember us but thankfully on this occasion I did not faint or feel the need to be sick.

Determined to be a good husband and leave with a good reputation this time, I stuck by Heather’s side. Unfortunately the seizure left Heather unsteady on her feet so I escorted her to the toilet. Within the cubicle I glanced in the mirror and to my horror saw a slightly altered looking reflection staring back. A small peely wally bloke with very blonde hair, black eyebrows and a large black handlebar moustache.

Once again, I looked like a total muppet.

Back in the hospital bay and after completing the numerous tests the consultants agreed Heather could return home, provided she was with a responsible adult. The doctor’s tone suggested this was more of a question, rather than an acknowledgement of my presence. I then explained the reason for my strange appearance to which he replied “I did wonder what that was all about”.

We left the hospital at 3 am.

The next morning we were up at 6.30am and set off as planned. Heather insisted on going but I did make her promise that she would go straight back to hospital if she felt unwell.

Then Heather did what she always does, she threw her cape over her shoulder and flew over to East Fettes Avenue. Nobody at SITC would know that her super powers had been temporarily affected by a dose of kryptonite the night before.

Being a fancy dress tournament there were a lot of people dressed as super heroes. Little did they know a real one was selling their raffle tickets, making the day run on time, oh and raising over £10,000 for Maggie’s!

Plans for 2020 are already underway. If you would like to be part of STICK IT TO CANCER next year please follow FUCANCER to be kept updated on all the events.

Another New Normal

Parsnip enjoying the viewpoint at the Forth Valley Maggie’s Centre.

Three months on from my last check up at the hospital and on the surface everything appears to be going well; I am back at work on a phased return and the preparations for the Junior and Adult STICK IT TO CANCER (SITC) hockey festivals are well underway. I feel like the human equivalent of the swan analogy – I may appear graceful and contained to the outside world, but below the surface I am furiously paddling.

It is no secret or surprise that cancer has a huge impact on mental well-being. I have always been open about how I felt following my diagnosis in 2014. The range of emotions included fear, anxiety, loss of confidence and in hindsight a total loss of identity. Life as I knew it was gone and I had to find a ‘new normal.’ I have worked hard over the last 5 years to ensure cancer does not define me or hold me back and during that time I have definitely grown as a result. In the words of Martin Luther King Jr ‘The Ultimate measure of man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy’.

It feels like the dust has began to settle on what has been a very demanding year and it is only now that I am adapting to the ramifications of another new normal. Despite a reduced visual field and weakness on the left side of my body, I have accepted the physical changes. It is the emotional impact that requires more tender loving care.

As a result of my seizures I had to surrender my driving license and kiss my beloved car goodbye. Making plans now includes debating if I have enough energy to endure an hour-long bus journey into the city before my day even starts. Simple things like meeting a friend for lunch and playing hockey have become a logistical conundrum. Having spent months relying on the Funny Boy and Buggernuts as chauffeur I am starting to find my independence, but it is not easy. I don’t want to be an imposition, and I struggle to ask for help which means I feel isolated.

Due to our circumstance the Funny Boy and I have lost all hope of having a little human family of our own. I am yet to fully admit how this really feels. Anger, failure and broken-hearted are the words that come to mind.  I suspect it something we may never get over, but I am hopeful it is something we will come to terms with in time.

Overall, I’ve been a useless human lately. I have focused all my vigour into returning to work and preparing for Stick it to Cancer.  I have skipped meals and even forgot to take my meds. I seem to have lost sight of what is important. As you can imagine a hungry Heather minus her daily dose of hormone pills is not someone you’d want to live with. As a wife I have more baggage than the average airport terminal. I am a nightmare and the Funny Boy deserves so much more.

Further treatment is inevitable. It is an overwhelming prospect and I would be lying if I said it doesn’t bother me. Quite often I think about how to prepare myself for what lies ahead but the reality is I can’t. Nobody really know what the future holds. The only thing I can do is start taking better care of myself so when the time comes I am physically, mentally and emotionally ready to fight.

So maybe I do appear calm and collected whilst deep down I fight fiercely to keep moving forward but I wouldn’t compare myelf to a swan. Most swans take a strong dislike towards Parsnip and if I can’t have human babies then I guess there is nothing to stop me from adopting another dacshund. Every cloud…

As always #FUCANCER

Living with cancer

On Wednesday this week I finally met with my neurosurgeon to get the results of my 3-month follow up MRI scan. 

As usual he uploaded the 3D images of my brain on the monitor and began to talk through the results. My surgeon is not solely responsible for my treatment. He is part of a Multi Disciplinary Team (MDT) which includes different kinds of doctors, nurses and other healthcare professionals working together as part of a specialist cancer team.

The MDT are confident the surgery has led to a 90% resection of both tumours – this is good news. The bizarre reality is I now have two big holes in my brain which were previously occupied by separate Astrocytomas. The not-so-good news is there is a ‘grey patch’ at both sites which could be inflammation and scar tissue or it could be leftover tumour. Unfortunately the imaging is not advanced enough to make the distinction. The MDT discussed options and have agreed that surveillance is best so I’ll be returning in August for another scan. If either of the  ‘grey patches’ grow in size this indicates it is tumour and therefore surgery may be required

Overall, I would say this news is neither negative or positive. Yes, there is a small relief that all going well I won’t need any treatment for the next 5 months. But, beyond that who knows? I am effectively stuck in limbo.

When I was diagnosed with cervical cancer 5 years ago the life I knew pretty much vanished overnight. After ploughing through treatment I had to come to terms with a ‘new normal’ – one which included infertility, menopause, fatigue and a total loss of confidence.

Once again I am faced with the challenge of adapting to another new normal. There is not one part of my life that cancer does not impact. I can’t put into words how much it has stolen from me and I feel duty-bound to share how this really feels.

I am ANGRY.

I am FRUSTRATED.

I am SAD.

I am HEARTBROKEN.

It has been a very tough few years and the last 12 months in particular has been an epic challenge but I do believe in the saying ‘what doesn’t kill you makes you stronger!’

As always, FUCANCER


SITC – Welcoming the next generation of Hockey Heroes!

STICK IT TO CANCER has raised £20,000 in the last three years and we are delighted to announce that this year we will be welcoming the next generation of hockey heroes at the inaugural Under 12 and Under 14 STICK IT TO CANCER in addition to the standard tournament.

Information and a Registration form for the U14 Tournament can be found by clicking HERE

Information and a Registration form for the Adult Tournament can be found by clicking HERE. We also have an event page on Facebook you can join be clicking HERE.

As always any questions please contact Heather@fucancer.co.uk

#FUCANCER
#STICKITTOCANCER

C’est la vie!

Happy FUCANCER Friday and apologies for the long pause since my last update. I would love to report that I have been sailing the Carribean, skiing in the Alps or encountering the big 5 in the Savana but I am afraid this bitesize update is quite dull. I suppose with all the drama we have had in the last 10 months (crikey – is that all? It feels much longer) I should be thankful for some peace and quiet.

In my last update I shared my frustrations and honest emotions in the aftermath of a second craniotomy. Literally 8 hours after uploading that vlog I found myself back at hospital wearing another operating gown as I prepared myself for an appendectomy! The surgery went well (Goodbye appendix!) and I was home within 48 hours but unfortunately I picked up a post-op infection which led to another week spent in hospital. On account of the infection I didn’t eat for NINE days. For those who know me well, I am sure you can easily imagine how challenging this was for me. On the bright side I did lose a stone in weight – a goal I hope for at the start of every New Year but the means in which it was achieved is something I would never recommend.

It took me another fortnight to get over the infection but I am delighted to say since then I have been exercising! Running, Bodyattack, weights and even a single session back on the hockey pitch. I have said it before and I will say it again – physical activity is the best medicine! Physically, mentally and emotionally I simply feel stronger.

So with 5 new scars (2 from the craniotomies and 3 from the appendix) I am in a stage of limbo once again. I have had my 3-month follow up scans and the plan is to meet with my surgeon again in April. That meeting will dictate the next steps. It is looking likely that I might need more surgery and following that a combination of chemo and radiotherapy. At the moment it is largely outwith my control and I have made peace with that.

There are a number of ramifications that the Funny Boy and I have had to deal with over the last few months. Those closest to us will know we were preparing to start the adoption process. Given my health we have made the difficult decision that this is something we can no longer pursue. Cervical cancer treatment left me infertile which is something I have come to accept but this realisation feels like another devastating blow. Forgive me for sounding arrogant but I know the Funny Boy and I would have been awesome parents but c’est la vie – it was not to be!

Anyway – back to the positives! I have been cleared to fly so I am looking forward to celebrating the marriage of my big bro and the lovely Katie in Canada! I am so excited to have two weeks away with my whole family! The Funny Boy and I have quite a few weddings this year which is great because it means plenty time to catch up with friends we don’t see often. We have also booked in a few extra special dates too. STICK IT TO CANCER is on track for the fourth year with the addition of two junior tournaments. Everything kicks off this Sunday for the Under 12s, June for the Under 14s and the adult tournament in July!

Before I finish I just wanted to say how much we appreciate everyone who has been in touch. The Funny Boy and I have been overwhelmed with how generous and thoughtful our friends have been over the last year. Even Parsnip has been the recipent of handmade, personalised gifts. You have made a challenging time much easier. From the bottom of our hearts – THANK YOU!

As always – #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!