Tag Archives: cancer

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

 

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

 

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

 

 

FUCANCER FRIDAYS

As of today I will be updating my blog weekly. Depending on how I am feeling this might be a simple sentence, picture or alternatively might be blog or vlog.

Cancer is a very negative business. Emotionally charged appointments, the agony in waiting for results, extreme treatments and of course the horrid and very real fear of death. Something nobody ever wants to talk about. Naturally it is very overwhelming. So, I am determined to use my personal experience to flip the negatives and find some positives.

In yesterday’s post I talked about how powerful exercise is – not only physically but mentally. So to follow on from that here is my first FUCANCER FRIDAY where I share just some tips on how I manage living with cancer. As always, if you find this useful please consider sharing.

#FUCANCER

The Power of Exercise

As I write this from my hospital bed it is safe to say that it has been a tough week. I am still waiting for a confirmed date for surgery and the ‘unknown’ has been causing some stress.

I have had ongoing issues with my bowels since completing cervical cancer treatment four years ago. At a recent appointment with Gastroenterology they found a build up of faecal matter (aka POOP) in my bowel. The advice was to start a daily dose of a bulking agent and a hot water cleanse. I also recieved a ‘how to guide’ on the correct way to poop. Apparently I have been doing it wrong for 32 years!! I chose to delay starting this as I thought it might impact surgery but after receiving the go ahead from the Neuro team I began the process on Tuesday this week. Long story cut short, I was taken into hospital on Tuesday evening after experiencing vomiting and diarrhoea – lovely!!

The doctors initially ran some tests which found a fever, high white blood cell count and low blood pressure so I have been kept in since. Today I am preparing for a sigmoidoscopy – another unwelcome surprise!

Anyway, before all the drama (including me being sick on all fours in the middle of AnE whilst a little girl asked her mum ‘why is that lady being sick in her hat?’) I prepared the following vlog which I still stand by. So if you are having a crap day make sure you get outside and at the very least go for a walk. That is the first thing I will be doing when I leave here.

#FUCANCER

Continue reading The Power of Exercise

Proud

For the past year I have been working as a Fundraising Manager for Cancer Research UK. Having gone through treatment for cervical cancer in 2014 I was left feeling in awe of the work they do and after a lot of deliberation, I finally took the plunge and left a career in sport (my first love) to pursue one in a new-found passion – fundraising!

I recently returned to work after taking some time off following my new diagnosis. My first team meeting in over 2 months led me to the Cancer Research UK Centre in Edinburgh. When I began my role I was surprised and impressed to learn that research was happening literally yards away from where I had been receiving treatment at the Western General Hospital. As part of my induction I had a tour of the labs where I met a few of the researchers.

I don’t come from a science background. My strengths at school were PE, Sport and English – if organizing was a topic then I would have passed that with flying colours but alas chemistry, physics even biology were a challenge! The idea of meeting researchers, especially those who focus on cancer was slightly intimidating.

On my first lab tour I was amazed at how the researchers were able to breakdown a very complex process into layman’s terms. What really struck me though, was their passion! I LOVE passionate people – the topic itself isn’t so important – but when I meet someone who is dedicated and determined to a particular cause I find it very appealing. I am not shy in admitting that upon finishing the lab tour I had a crush on several of the researchers!

About 6 months ago I walked past one of the researchers whilst I was shopping with my mum. He wouldn’t have remembered or recognized me but upon seeing him I had the same reaction to the one I had when I saw Rod Stewart in Harrods: I grabbed my mum’s arm, pointed and repeatedly whispered his name! Basically the researchers, in my eyes, are total rock stars!

So, how does it feel to have cancer whilst working for a cancer charity?

In two words I feel lucky and proud!

My job has allowed me a backstage view to some of the ground breaking, life-changing, life SAVING research which is happening right now! I have met the real life superheroes who are actively bringing forward the day where we will find a cure for cancer. I have also had the honour of working with just a few of the thousands of people who support Cancer Research UK. From the Tartan Monster in Selkirk, to the phenomenal Lanark Local Committee who are celebrating their 50th year and reaching their £500k fundraising milestone to people like Pete the ‘Can Man’ who has single-handedly raised several thousand pounds through collection cans across the capital city. These volunteers have taught me the valuable lesson that you don’t have to wear a lab coat to help find a cure for cancer.

It is because of all of them – the researchers, the volunteers and my awesome colleagues that I feel lucky. I know there is a an almighty army of people who are continuing the fight everyday. Together we are stronger and I am beyond proud to say I work for Cancer Research UK.

#FUCANCER

 

A Gift

In 2016 I ran the London Marathon for Cancer Research UK. As part of my preparations I remember training on World Cancer Day and putting the following post up on Facebook:

“1 in 3 people will develop cancer in their lifetime. But the impact of cancer goes much wider. Like a pebble hitting the water the ripples spread far and wide. When an individual is diagnosed it changes life for them and their family and friends. Today is #worldcancerday and it is a #adaytounite everyone who has been touched by cancer. Grandparent, parent, sibling or other. Stand up and say #fucancer If it wasn’t for Cancer Research I wouldn’t be here today.”

Personally, the hardest part of being diagnosed for a second time is seeing the impact and strain it has upon the ones I love. Regardless of how hard they try I can see the concern in their faces. I can tell how worried they are and I know how desperately they wish this wasn’t happening to us.

Similarly, since my new diagnosis I have been reminded of how awkward cancer can be for friends and acquaintances. The reactions can range from invasive questions about diagnosis, treatment and even to query if it runs in the family (it doesn’t by the way) to complete avoidance: ‘don’t make eye contact, don’t engage in conversation, just sidestep at all costs’! On some occasions I can virtually see the panic on peoples’ faces desperately looking for an escape route as they prepare to flee. I don’t believe it is me they are running away from but most likely a fear of saying the wrong thing.

I genuinely believe most people are good at their core but we are human and that means we make mistakes. The good news is that is how we learn! So here is a valuable lesson to help everyone in this scenario – a gift from me to you…

It was during my treatment for Cervical Cancer when I was referred to the very useful article and diagram below on ‘How Not to Say the Wrong thing’.

Silk & Goodman’s Ring Theory

I find Silk and Goodman’s ‘Ring Theory’ to be a VERY useful tool and one to be shared. This theory can be applied to anyone facing a crisis or a challenge. And let’s face it we all have difficult times at some point – it’s part of life I am afraid! Likewise, the theory helps set a precedent for the family, friends and acquaintances and even includes suggestions on what to do or say.

If you have found this useful please consider sharing.

#FUCANCER