As always – FUCANCER
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
I am absolutely blown away on receiving The Forth Charity Volunteer of the Year Award yesterday. However, this is a HUGE team effort and a result of all the hard work everyone puts into STICK IT TO CANCER. Thank you to the committee, event volunteers, participants and supporters. This award is for you!
Thank you to all the people who took the time to nominate me. I can’t tell you how much it means to me.Big thanks to Forth for inviting the Funny Boy and I – we had an incredible afternoon. Many thanks to Gilson Gray for sponsoring the award. Congratulations to all the winners – we heard incredible stories yesterday which goes to show that through adversity amazing things can happen. I was left feeling both inspired and motivated to do more!
BRING ON STICK IT TO CANCER 2019 – I can’t wait! For more information on next year’s event please join the Event Facebook page by clicking here or email Heather at firstname.lastname@example.org.
As always, #FUCANCER
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!
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
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:
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!!
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
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!
A wee video of Heather post op:
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.