All posts by Hevewilliams

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

 

#MeAndMyDogSelfie

October is #Standuptocancer month – please help us bring forward the day where we find a cure for cancer by posting a #meandmydogselfie and texting PARSNIP to 70404 to donate £5 to Stand Up To Cancer UK which funds lifesaving research.

Don’t have a dog? Cats, rabbits, lizards or even a cuddly little toy? The more the merrier! Please share with your friends – Join us and STAND UP TO CANCER!!

#FUCANCER

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

Two steps forward, one step back

You might think by now I would have formulated an easy way to break this news, a magic method  to avoid  the shock or  prevent  the sting but of all the things cancer  has taught me – and believe me, the list is vast – to no avail it has not equipped me with best method of letting  people know – I have a new tumour.

I am going to keep this short and simple: On review of my scans the doctors have found a new tumour located on the other side of my brain. As a result I will be returning to hospital at the start of December for another Craniotomy.

Now for the good news. The location of this tumour makes the operation more straight forward and  presents fewer risks. It won’t be an awake craniotomy which means I won’t be wrecking anymore hospital equipment.

Personally, the worst part of cancer continues to be  the stress and worry it causes the ones I love. Yesterday was a familiar feeling – a series of phone calls and conversations with my nearest and dearest as I played the role of messenger delivering more bad news. It breaks my heart but the love I feel makes me even more determined to continue saying FUCANCER!

As I prepared myself for Wednesday’s appointment and imagined every possible outcome – I was not prepared for the news of a new tumour. Of course it is a huge shock but as I left the hospital I did feel hopeful.  You might expect I would be left feeling deflated after such news, as if I am taking two steps forward, one step back  but my surgeon took the time to reassure me of the strength he has seen in me – literally and figuratively! So much so, I was half expecting him to hand me a bill for this fancy brace I supposedly damaged,  instead he presented me with the action plan and  I was armed  with my timeline for the next steps and feeling empowered with the knowledge that I am capable to tackle it head on.

As I continue to recover from my recent surgery I can feel myself getting stronger each day. My focus remains the same: Get strong: get fit and  say FUCANCER. Yes, there is a new hurdle but the finish line  hasn’t changed. Speaking of sport – it is with great delight that I have not only been given the ok to start exercising but my surgeon has actively encouraged me to return to hockey! He believes  it will be an excellent form of rehab! So next week I’ll be dusting off my stick and returning to the friendliest hockey club in Scotland’s capital!! How is that for some good news?

As always, FUCANCER

 

Mini meltdown

Well, we knew it was coming but yesterday I had my first post-op melt down.

It is now two weeks since I had my awake craniotomy and overall I am doing as well as can be expected.  In all honesty I feel absolutely exhausted and the prospect of writing a blog seemed more challenging than cathartic. I have attempted to vlog, but reviewing my efforts I think I need to focus on my speech therapy before I feel comfortable speaking in front of a camera… then again perhaps Vlogging would be a good form of  therapy? Aside from  the pretty impessive scar I am now boasting, there are a couple of major changes…

Reduced sensation

Thankfully I am able to move and control my left hand side – this was one of the biggest risks we faced so i am already feeling like a winner that I can move, walk and talk independently. However I have a numb sensation running down the length of my body. It is akin to the feeling when you receive anaesthesia  at the dentist. This does present a few challenges such as eating, speaking and a very slow response to extreme temperatures (i.e. If I am holding a scolding cup of tea my right hand is compensating for its sleepy counterpart).

I am relying on friends and loved ones to notify me if I have food on the edge of my mouth which is now  a common occurrence. Dribbling is another not so-sexy- side effect. As I sat doing my jigsaw puzzle I couldn’t understand how Parsnip’s wee head had got so wet whilst she slept on my lap -turns out her head was directly in the firing line of my saliva..

 

I regret to say my sense of taste has been butchered – food and drink don’t taste like they should which has induced a few hangry incidents.

Cognitive function

As I said at the start, overall I am doing pretty well – I am walking the dog, visiting the shops, more than capable of feeding and washing myself, but there are odd episodes where I find myself questioning what is going on. For example, whilst in the hospital; I went to the loo, locked the cubicle, sat down and took down my trousers but something didn’t seem quite right… It was then I realised I had forgotten to take down my knickers before relieving myself. Thank goodness it was only  a number one and as my mum says – my Lacey thongs don’t have much substance so it wasn’t a huge disaster. Upon returning to my bed and disposing said thong, I confided in my nurse who reassured me:

“If that is the wort thing that happens whilst you’re recovering from brain surgery i’d  say you are doing really well”

Basically  everything requires more energy and brain power which ultimately leaves me feeling fatigued. Don’t feel sorry for me though – if you want to offer sympathy to anyone, send it to the poor funny boy who is currently living with an adult toddler. Our daily conversation goes something like this…

FB:”Heather, I think  it might be Time for your nap…”

Me *Whilst sobbing* “I don’t need a nap….”

FB: ‘are you sure? You seem a little emotional…”

Me *still sobbing* “I was watching the bake off and it made me sad…Rahul bakes to meet friends…”

So, what triggered my meltdown? 

Ever since we found out about surgery I was told by pretty much every nurse and specialist;

’at some point you will be upset about your hair. It will get you, you will cry’

I assumed this would be at the unveiling of my scar. Truth be told when I first saw it – I was impressed. How did they manage to create  a huge scar whilst leaving me with most of my hair? (Another reason Mr Liaquat is a legend!) but, yes unfortunately they were right.

In celebration of Buggernuts aka my dad completing his monster March which saw him successfully complete monthly 10kfor a full year whilst raising over £1k for maggie’s Cancer Centres, we decided to go out for dinner.  Due to the wound I can only use baby shampoo which is leaving my hair feeling very greasy – combine that with the stubble around the scar i’m Not so amused by my barnet and trying to work our how to rock my new hairdo whilst out at a restaurant provoked a mini meltdown. True to form – I was quickly rescued by the Funny Boy and Iceberg, who between them adopted the YouTube link below and fashioned a silk scarf into something quite acceptable.

So, before I sign off and go for my nap – don’t worry i am not sobbing (GBBO isn’t back on until tomorrow)but  if anyone can offer some simple ways to wear a headscarf or if any fashionistas can recommend what headwear would suit my square-shaped face then please get in touch

as always #FUCANCER