All posts by Hevewilliams

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

 

 

 

Initial thoughts…

Since Monday morning I have had the same song from The Greatest Showman stuck on repeat at the back of my mind…

 

’I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me

It is FUCANCER Friday and what a week it has been. Technically on day 4 post op and I am feeling way better than expected. First, please excuse the following update as I am sure it will be littered with grammatical and spellling errorss however I am not apologising  because the fact i am able to write this gives cause for celebration!

So, as the Funny Boy implied everything didn’t go quite as planned – On account of me literally breaking free from a 3 point 60lb brace. According to my surgeon in 20 years he has only seen this achieved 3 times and I’m the first female. Admittedly this is not a title I had hoped for. I  was really angry and disappointmed in myself when I found out – I wanted to play by the book and had rehearsed the steps in my mind in the days and hours leading up to the operation but the main thing is that my surgeon is happy if not a little amazed at my brute strength!

The days here are highlighted with visits from family, friends and my number one sidekick Parsnip. So how am I feeling? I can hear a frequent clicking in my head which I’m told is the sound of my skull knitting itself back together. Every time I hear it I have an image of the grannies from the shreddies advert working away in there.

The fantastic news is I can control my left hand side – Overall mobility is good but basic tasks like. Speaking, eating and brushing my teeth are challenging and require more brain power and concerted effort. I have reduced sensation on my left so response to temperature and my ability to grasp is slightly diminished but i am in no way complaining- for a first step I’m already higher than i expected to be. I’m very weak with a lop-sided smile and slurred speech but that will improve. Plus I have an awesome new scar! So initial thoughts from me…. the medical team here deserve the greatest gifts this earth has to offer – I have no idea how I am going to show my appreciation  to  Mr Liaquat, Sue, the many many, many nurses  and all the therapists too.  Mr Liaquat (my surgeon) is my new hero and at the next FUCancer event we will be cheering for him and his heroic team!

I feel so incredibly lucky to be alive. The reality is now hitting me – rehab will require the 3 months advised. Speech therapy has begun and I’m working my way through tongue twisters I doubt I could have achieved even before Monday but I am looking forward… Looking forward to going home  getting strong.

Thanks for all the amazing messages and huge apologies for the less than coherent replies. Reviewing my sent items proves my brain is not working at its optimum!

FUCANCER

 

 

 

 

 

You Won’t Like Me When I’m Hangry

A wee video of Heather post op:

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After being ill on Friday and an emergency visit to hospital we awoke on Monday morning with the very real prospect that surgery might not go ahead.

We had been up late chatting and putting the finishing touches to the FUCancer playlist from all the suggestions Heather had. I spent most of the night adding in some Kiss and AC/DC to balance out the Britney and Kelly Clarkson tunes.

I awoke at 5.30 am to the sound of the playlist up to 10 and Heather dancing around the room singing along, it’s moments like this, when you realise Cancer doesn’t stand a chance with this girl.

It’s fair to say Parsnip was not happy with her mummy’s mood, burrowing under the duvet and refusing to come down for her breakfast.

After showering and getting ready there was time for 30 minutes more dancing and singing before we left for the hospital at 6.30 am.

Heather collected her post it note affirmations from the mirror and encouraged the whole family to adopt a superhero pose.

A few more tracks from the playlist and we were at the hospital. We were about 45 minutes early and the walk we had planned to kill time was quickly abandoned on realising that the best summer weather ever had gone and it was absolutely minging out there.

We then sat with a series of doctors who would be managing the surgery, going over the risks and confirming Heather’s consent.

With each new doctor or nurse we had to explain Friday’s nightmare, knowing that this might mean the surgery would be cancelled.

The decision was made to go ahead and it was time to say goodbye and although Heather didn’t have her cape and spandex she was ready for another city levelling super battle, as she was wheeled into surgery in her gown and slippers.

With all the chat about Friday I had forgotten to mention to the staff that Heather was a real life super hero and that normal needles wouldn’t pierce her skin, special equipment would be required to operate on her and control her super strength.

The NHS bill for Heather’s treatment in recent years was huge and has been priceless for us, thankfully they have never sent us an invoice for equipment damaged, while treating this super specimen.

In similar fashion to Dr Banner, 4 years ago Heather was exposed to high levels of radiation, as treatment for her cancer. 

Unfortunately it doesn’t work like the movies and the result of this life saving treatment is years of side effects that impact your daily life.

Thankfully for us Heather already had a hulking green monster inside her and anyone that knows her will agree “you won’t like her, when she’s hangry”.

The last time they tried to strap her down for a procedure (Brachytherapy), she awoke to find stirrups bent out of recognition, apparently not designed for super thighs.

On Monday they would be cutting a hole in her skull, exposing her brain, her head pinned into a brace with three prongs, held in place with 60 pounds of pressure.

As I left the hospital my mind flashed back to the pre-op questions, “when did you last eat Heather”, “I had a biscuit at 9.30 last night” she replied.

Panic hit my body, Heather now hadn’t eaten for over 12 hours and hanger would be setting in.

There was no time to call Thor or ask Tony Stark to fly in his hulk buster, all I could do was pray that she could keep it under control.

The day was a blur, spending time with family and trying to distract myself from the reality that whatever happened today, my life with Heather would be changing.

I was expecting a call about 2.30 to say how she was, it didn’t come. I knew it could be later, but that didn’t lessen the worry, when the call didn’t arrive.

I felt like I was having a panic attack and found myself wandering aimlessly trying to control my breathing.

About 4.30 I got a call from the surgeon who had led Heather’s operation, his name isn’t Professor X or captain America, but he was the leader of a team avenging Heather against cancer.

He told me that it had gone well and that she was moving her arm and leg, one of the biggest risks was damage to Heather’s motor strip and that she might lose use of the left side of her body. He repeated this a few times, before I clarified “both arms and legs?”, “Yes both” he replied. I was overjoyed, the NHS aka the Avengers had done an amazing job again, despite the challenges of operating on a super human….“BUT” Professor X stopped me in the middle of my 5th thank you speech and said “there was a slight problem”.

When they woke Heather up, having earlier anaethetised her with a combination of gas, morphine and kryptonite.

Sitting with her brain exposed and her skull pinned in place Heather came too with an empty belly. Her skin quickly turned from pale pink to deep green, her hospital gown bursting at the seams. Flexing her arms and legs and with one swift motion of her now bulging 23 inch green neck she broke free from her shackles.

The Avengers jumped into action, Professor X covering her exposed brain to prevent the pins causing her serious injury, while Wonder Woman grabbed the equipment and quickly intubated Heather with a high dose of kryptonite, putting her back to sleep.

The “awake craniotomy was off the cards, the carefully plotted out procedure couldn’t continue in the decimated city scape that surrounded them.

The Avengers moved to plan B and pressed on with the operation. Professor X no longer had the feedback that an awake craniotomy provides and would need to use ultrasound and judgement to remove the tumour.

As he relayed this story I felt slightly embarrassed to have earlier been on the verge of a panic attack, while waiting for a phone call. For Professor X and the Avengers there was no panic, there was calm and composure.

At 5 pm we were allowed to visit Heather, as I walked in the room I saw my beautiful wife smiling back, looking better than she had done on Friday in St John’s hospital.

She immediately began apologising for destroying a city scape during the operation. I could almost hear the sad piano music from the credits of the Incredible Hulk in the back ground, as he walked to another town regretting the destruction and chaos he had left behind.

After apologising 50 times we received visits from Professor X, Wonder Woman, Captain Marvel and various other members of the NHS Avengers, all were happy with how the operation had gone.

Heather spent the next hour slagging her dad and I, singing songs about “peeing freely” and telling constant jokes.

Draped on the end of the bed was a red thin shiny piece of fabric. Heather had hung up he cape for now and along with the NHS Avengers she had earned a rest!

However there was one more mission and I her trusty sidekick, would have to complete it alone. Was I up to the challenge? Could Penfold fill in for Dangermouse, could Robin star in a standalone movie without Batman? What would my mission be?

“Seeing as I won’t be there, please can you sing Parsnip a song for me, when you get home?” This I could do, “What song?” I asked. She replied with a serious expression on her face, pausing for effect, such was the perilous nature of my task…“Nobody does it better by Carly Simon”.

So if you hear a whining noise tonight, it’s not the cats on the wall outside. Look out your window and you might see a grown man slow dancing with a sausage dog murdering a great song, in the name of saying FU Cancer.

Super Heather

You may have to excuse the lack of writing ability in this latest blog.

That is because it’s coming to you from the one Heather refers to as “Funny Boy”. You might think that at least having earned this title you will be in for a humorous and entertaining read.

Sadly Heather is the only person that has ever referred to me in this manner and I’m not even sure why. Possibly it might be the laughter I brought to an entire A & E staff after passing out and splitting my head open or perhaps it is a reference to the many times a day Heather jumps out on me and I jump out of my skin, which definitely amuses Heather. Anyway I don’t think any of this is a deliberate attempt at humour on my part.

I am writing the blog today on strict instructions from Heather, as she is currently in hospital recovering from surgery to remove a tumour from her brain.

If you follow Heather’s blog, you will know that we had an overnight stay in hospital on Friday, after Heather was sick and had a seizure.

While in hospital with her I witnessed something incredible that I wanted to share.

Heather had been vomiting for about 9 hours by this point, it was now 5am and her hair was tied in a top knot and flowing out at the sides, like a strange pineapple with a blonde wig on top. There were bags under her eyes and her skin was pale and clammy. She had a dye patch test on her neck for eyelash tinting, which resembled a love bite that had gone septic. She was wearing a blue t-shirt, which was lightly flecked with yellow vomit from earlier in the night.

The doctor entered the room and informed Heather of her latest mission, a CT scan to establish if this latest illness had been caused by changes in her tumour. Heather was helped from the bed and into a wheelchair. The nurse looked at Heather shivering and offered to place a blanket around her shoulders.

She picked up a large red blanket and tied it at the neck, which draped round Heather’s shoulders and down to the floor.

Combined with the blue t-shirt with yellow patches, it completed the look….Super Heather.

She clenched a fist and pointed it in the above her, leaping out of the chair, jumping into the air and bursting through the ceiling tiles shouting “FU Cancer” as she flew away to the x-ray department.

A few hours later the battle was won, we were home again and looking at Heather I cleared my eyes wondering if she had evolved into a super Dachshund/human hybrid.

I realised she just had our sausage dog inside her t-shirt with her head poking out the top like a jack in the box. The hero had been reunited with her number one sidekick the Robin to her Batman.

Heather has saved my world many times and I am grateful to be her number two sidekick (Alfred the butler) and to be part of this super team.

You might know a hero like Heather, you might even be one yourself. If you’ve fought this terrible disease or supported someone who has, then you probably are.

So if you ever look up at the skies in Scotland and wonder if it’s a bird, a plane or a blonde with a sausage dog, then it’s probably Super Heather!

 

Heather and Parsnip recovering on Saturday

 

Prepping for Surgery

Well, its the final 24 hours before surgery and after a not-so-great start to the weekend I am feeling as well as can be expected. The bag is packed, my affirmations are on the wall and I my deep breaths are helping me keep my cool. Thank you to everyone who has been in touch – I have been overwhelmed and so very touched by your very kind words and amazing generosity.

One day closer to surgery means one step closer on the road to recovery.

BRING IT ON!

#FUCANCER

 

STAND UP TO CANCER

Apologies for being a day late in getting this up – yesterday I had pre-op as planned which went really well. Unfortunately the Funny Boy and I had a rough night though – vomiting, diarrhoea and a mild seizure warranted another ambulance ride back to the hospital. The biggest worry on my mind at this point is all about being fit for surgery. So after some anti-sickness drugs, another line to prevent dehydration and several tests I am delighted to be back home now. The doctors will do more tests on Monday to double check I am fit for surgery but in the meantime its all about rest, recuperate and building up my strength whilst mentally preparing….

Anyway, back to looking at the positives. This week the local press revealed that I have been asked by Cancer Research UK to be the face of STAND UP TO CANCER in Scotland. I have previously spoken about how proud and passionate I am to work for CRUK so it is an honour to be asked. I would strongly encourage you to think about something you could do to STAND UP TO CANCER – perhaps you are part of a sports club and could arrange a training night dedicated SU2C by asking players to dress in orange and bring along £5 to drop in the bucket? Maybe you’re inspired by the Great British Bake Off? Or perhaps you have something wacky you would like to do with your friends – fancy dress, games night etc. This list is endless and there are fantastic resources on the website HERE to help you with your fundraising plans. And as always – no matter how large or small your contribution your money IS making a difference and ultimately saving lives – plus it gives you a good excuse to have some fun with your friends!

#FUCANCER

 

Bittersweet Cancerversary

Monday 27th August will mark four years of being in remission. Technically I am still in remission for ‘that cancer’ but with a new diagnosis this anniversary is bittersweet.

For those who have been asking here is the ‘how to poop guide’ I received from the Gastroenterologist – everyday is a school day!

Finally I just want to say a MASSIVE thank you to everyone who has been in touch – your kind words, thoughtful gestures and unwavering support is hugely appreciated! You have given me a much needed boost!

#FUCANCER