Only 6 more sessions of radiotherapy to go! I am feeling so much better than I thought I would be at this point. When I had radiotherapy 6 years ago, (wow! Has it really been that long!) at this point in treatment I was on crazy pain meds, struggling to sleep and unable to walk the 3 flights of stairs to the flat we lived in.
Excluding my rock chick inspired hair do and feeling super tired, overall I’d say I am doing really well. I have managed to do some form of exercise everyday which is definitely having a positive impact. As I have said previously, radiotherapy is cumulative and it is highly likely that I’ll be hit with fatigue at some point, but for now I’m embracing what I can do and aiming to enjoy as much as I can.
It’s weird being back at the Edinburgh Cancer Centre for daily visits. All the staff are super kind and it’s a great excuse to pop in to Maggie’s which is literally a home away from home whilst stuck in hospital. They are so welcoming and the centre itself is a huge contrast to the clinical setting of medical appointments.
One of the hardest aspects of being at the hospital is meeting all the other patients who are on their own ‘cancer journey’ – so cliche but true. It is a humble reminder that no matter how hard I think I have it, unfortunately there is always someone who has it worse.
On Monday I have my planning meeting for chemotherapy. I don’t know if I previously mentioned that this is part of a Cancer Research UK trial. I am very passionate (aka – total geek) about the work of CRUK so I’m not ashamed to admit that I’m very proud that my very unwelcome cellular demons are finally proving to be of some use!
With surgery on the 9th of December and the small matter of a general election 3 days later, the Funny Boy and I have confirmed a postal vote so we don’t miss out. In the last few years I have found political news fascinating – it is so gripping it resembles a Netflix blockbuster series! From Independence to Brexit there has been plenty of drama. It is hard to watch and at times even harder to believe. For one programme we simply have too many villainous characters – I don’t know who to trust!
Two major hospitals in Scotland have experienced huge challenges under the Scottish National Party: The Glasgow Queen Elizabeth Hospital is facing one problem after another and as for the revamped Royal Infirmary in Edinburgh – that was due to open 4 years ago but can’t due to problems with air conditioning and risk of flooding. As a Neuro patient I was promised the move to the new department in May 2018 but to no avail – a date is still ‘to be confirmed’.
More so than ever before, I have people asking me who will get my vote and the truth is I am still unsure.
It is fair to say that I’m a hospital patient more than your average person in their 30s and on each occasion I always leave feeling in awe of the doctors and nurses who support me. Their dedication and passion is second to none and I have never met a harder working group of people. On more than one occasion I have watched nurses work a 12 hour shift finding no time to finish a hot cup of tea, let alone a proper lunch break!
As for the Conservative Goverment – they have steadily reduced budgets, the number of nurse training places has been cut and they abolished bursaries for trainee nurses. The result of which is 93% of NHS trusts falling short of the number of nurses they need: that’s three times more than five years ago. Nurses are being substituted with untrained assistants.
Ultimately the front facing team who deliver healthcare are not able to do their job to the best possible standard meaning people’s lives are at stake.
Now, there is proof that our current Prime Minister has initiated conversations with the USA which suggests that privatisation of our NHS could be a reality in the future. This terrifies me!
The average cost of someone being treated for brain cancer in the USA is $150,000 per year. I cannot begin to imagine how hard it must be to face a cancer diagnosis whilst dealing with the financial implications.
Today I had a four hour appointment to check I was fit for surgery. This allowed time for me to discuss the procedure with my surgeon, anaesthetist and nurses. Living in the UK, I don’t need to worry about the cost of treatment because we have the INCREDIBLE NHS. This is what our taxes pay for – the NHS is our lifeline that is there when we need it: 7 days a week, 24 hours a day! I am genuinely frightened that our vital lifeline could be lost within the next two decades.
In my lifetime I have had 8 operations. In the last decade I have had over 20 MRI scans, countless blood tests and more. In the last 18 months I have required 5 ambulance trips and spent more than 40 nights in a hospital bed. Every morning I take three types of medication which I depend upon to get me through the day. I have a medical team which includes specialists from surgery, oncology, neurology, epilepsy, psychology and even menopause.
Cancer doesn’t discriminate, accidents happen and everyone will experience poor health at some point. Let’s not jeopardise healthcare based on who can afford it. As you prepare to vote, please take time to appreciate our NHS and consider how your vote can protect it.
Today I had the pleasure of attending Scottish Power’s Partnership day with Cancer Research UK.
It was amazing to learn that Scottish Power have raised £25million for Cancer Research UK in just seven years! Even more impressive is hearing they have no intention of stopping. A fantastic example of how a corporate partnership really can make a difference.
We had the pleasure of hearing from world leading researchers Professor Andrew Biankin and Professor Steven Pollard. Professor Biankin leads Precision-Panc, a groundbreaking project developing personalised treatment and improving survival for pancreatic cancer- one of the hardest cancers to treat. Professor Pollard leads a team of scientists from the UK, USA & Canada carrying out pioneering research in ‘glioblastoma’- a fast growing type of brain cancer.
I was very excited to meet Professor Pollard who specialises in Brain tumour research. Prior to working for Cancer Research UK I assumed research only occurs in London. I was hugely mistaken. Cancer Research UK is funding institutes, centres and projects across the length and breadth of the UK. Locally, research happens within yards of the Cancer Unit at the Western General in Edinburgh where I receive treatment. Professor Pollard knows Imran Liaquat, my Neuro Surgeon, and the Neuro-oncologists who I’ll be meeting in the not-too-distant future. Imran regularly refers to current research when discussing treatment options and knowing that there is an open dialogue between the clinic side (Professor Pollard) to bed side (Mr Liaquat) is really reassuring. It reminds me that research is not an isolated activity happening in the distance but a huge team effort which brings together specialists from all fields. Professor Pollard kindly invited the Funny Boy and I to have a tour of the lab in Edinburgh which we hope to do next week.
After a tiring and mentally tough few days this morning’s event has definitely helped me rediscover my ‘mojo’. Research does make difference. Huge thank you to Scottish Power for your unwavering support to Cancer Research UK. A constant reminder that you don’t need to wear a lab coat to help find a cure for cancer.
Craniotomy #3 is in 12 days and I’m beginning to feel the pressure.
Cancer initiates a lot of conversations and generates a lot of admin that most people my age won’t consider. It destroys plans, impacts friendships and wreaks havoc on the mind and body. All of which can be very isolating.
With another operation and radiotherapy planned my focus is on taking everything one step at a time.
It has come to my attention that yesterday was World Gratitude Day. Despite a very challenging year I believe I am more thankful than ever!
My family, my friends, my medical team and Maggie’s are top of the list of who I’d like to show my appreciation for. I simply wouldn’t be where I am today without them. The reality is the list is a lot longer. I am grateful for the ingenious researchers who made my cancer treatment possible and the phenomenal NHS who I’ve become far too familiar. It’s quite apt that I am writing this blog from a hospital bed…
Unfortunately I had a seizure last night which resulted in another trip to A&E. Every trip to hospital, especially when visiting the emergency department, I feel like a drama queen wasting precious time and valuable resources. Once again I was reminded of how hardworking and caring the NHS team are. From James, the reassuring and thourough doctor who gifted me his banana as a snack, to the ever cheerful nurses who are always on hand and the super thoughtful porter who searched the wards to source me a toothbrush and toothpaste. They are simply amazing.
Following a CT scan, a good night sleep and a slight change to my medication I am happy to report that I am back home with lady Parsnip and the Funny Boy. I am not ashamed to admit that the only time I experience homesickness is whenever I am forced to stay in hospital.
With family living in Canada and a slight insight to the cost of medical treatment – I realise how much I take a funded health service for granted. Within the last 12 months alone I have required two operations, spent multiple nights in hospital and received several MRI and CT scans – the cost of which is more than tens of thousands of pounds. To put it simply, if I lived in another country I doubt I could afford to have cancer!
So in light of World Gratitiude Day I want to show my appreciation for everyone who lifts me up but especially the NHS. You are incredible. We are so lucky to have you. Thank you!
Cancer has been a part of my life for 5 years. In that time I have grown immune to the range of reactions people give:
“But you’re so young!”
“You must have a history of it in you’re family”
“But you’re back to normal now?”
And another common response is one of silence carried with a look of disbelief. I am an open person and frequently use my story as an opportunity to raise awareness. Don’t get me wrong – I don’t introduce myself as ‘I’m Heather and I have cancer’ but if the topic does come up in conversation I will reinforce how important it is to regularly check your boobs or balls, attend your screenings and go the GP if you do notice any changes. I do wish cancer wasn’t a part of my life but it is not something I am ashamed of. I think it is important to educate people that cancer does not discriminate which means we are all at risk. There is no history of it in my family and unfortunately life never goes back to ‘normal’.
Cancer has a huge impact on mental health and over the last few months I have really struggled. At first I thought it was just a blip – it has been a crazy year and at some point the emotions were due to catch up on me. After a gentle nudge from the Funny Boy I finally visited my GP. I explained how my mood was impacting my work, relationships and even preventing me from making simple decisions. She diagnosed me with depression and suggested I try taking an anti depressant. I left the surgery with my prescription and dismissed her diagnosis. I was stubborn and embarrassed – I had no intention of taking the medication.
Unsurprisingly my situation didn’t improve. I felt like I had failed at everything and even started questioning ‘what’s the point?’ Once again the Funny Boy intervened. We booked another appointment with my GP and planned a trip to Maggie’s. I was honest with my doctor and admitted I hadn’t started the medication. At both meetings I explained how ashamed I felt – I wasn’t prepared to accept or admit that I was depressed.
Thankfully, with the support of my GP, Maggie’s and Funny Boy I started to take the medication and see a psychologist. More importantly they gave me the courage to start talking about my mental health with my family and friends.
According to statistics 1 in 4 people in the UK will experience a mental health problem each year. Or to put it another way at some point pretty much everybody will experience poor mental health in their lifetime – so why is it still a taboo?
Why did I fear telling people?
Why was I so scared of being judged?
And why, why, why do I find it easier to say i have cancer than admit I have depression?
I am definitely beginning to feel better but it hasn’t happened overnight. For me everything began to improve when I admitted there was a problem and I started being honest with my nearest and dearest. The reality is my family and friends have shown me nothing but love, support and understanding.
Funny Boy here, I felt compelled to step in and write a blog because I don’t think Heather will reveal what happened last week…
It has been a very busy summer for Heather. Not satisfied with organising the annual STICK IT TO CANCER (SITC) tournament, she took on the challenge of organising 2 additional events.
In between the hockey festivals we flew to Canada to celebrate the wedding of Heather’s brother, Gareth and the lovely Katie. It was an incredible trip and we returned refreshed, if slightly jet lagged.
We arrived at 9am on Monday morning and from the moment our flight landed Heather opened her TO DO LIST for the final Stick It To Cancer tournament.
Heather works on STICK IT TO CANCER throughout the year. She has a GANTT chart, a mood board and is constantly considering new opportunities to improve the event and ultimately raise more funds. I, too had been preparing for SITC – My preparations started about 6 months ago.
For those of you who are unfamiliar with SITC, it is a fancy dress hockey festival. The tournament offers prizes for the Champions, Best Dressed and Spirit of Stick it. Determined to be a contender for Best Dressed I decided to dress as one of my all time heroes – Mr Freddie Mercury. In order for it to be convincing I knew I needed to grow a beard for the sole reason of having a real moustache. So as of January my prep began.
I knew Heather wasn’t fully on board with my new look. As Gareth’s wedding drew closer she said to me “the photos from the wedding will be around a long time, are you sure you want to look like that?”
I considered what she said, but while Heather had been making spreadsheets, recruiting volunteers, contacting donors and managing social media I had been doing my prep; pushing the follicles out of my face was hard work.
The eve of STICK IT TO CANCER arrived. Heather and I woke early with a busy schedule of moving equipment, setting up the pitches and one final shopping trip. When we finally arrived home I knew we wouldn’t be going out again. I decided it was time to kiss the beard goodbye and style my Mercury moustache. I stole Heather’s mascara and blackened my new tash and eyebrows. It’s fair to say the results were ridiculous; My hair bleached blonder than usual from my two weeks in the Canadian sun contrasting with my new matt black moustache and eyebrows.
The preparations were complete and Heather seemed happy so there was nothing left to do but relax. We snuggled up on the sofa with Parsnip and put on the TV.
All of a sudden Heather sat up and repeatedly told me she felt dizzy. She was conscious and talking but as she got up to walk her coordination was missing. She continued talking but nothing she said made sense. It t took me a good few minutes to realise that Heather was having a seizure.
So it is 11pm on the night before SITC and I had no choice but to take her to hospital.
It took Heather about an hour before she started to feel better. She couldn’t remember how she got to hospital or indeed anything in between.
As usual the staff at St John’s hospital were amazing. They spent a few hours performing various tests on Heather. As she started feeling better and began to realise what day it was Heather quickly focussed on the hockey tournament (which was due to start in a number of hours) and started pleading with the doctors to let her go. SITC is arguably one of the biggest days of the year for us, Heather was desperate to be there.
Heather has a team of amazing volunteers and a committee that help with planning the tournament, but she is responsible for a lot of what happens on the day.
I had the startling realisation that if I had to lead the event on her behalf then the only work I had done was growing a moustache. This leads me onto another point: Once again I am back at St John’s hospital in the early hours of the morning supporting Heather. This Accident and Emergency Department is now the scene of just a few of my less-than-proud moments; passing out and cracking my head open was pretty spectacular and on another occasion I vomited all over the back of an ambulance. The staff seem to remember us but thankfully on this occasion I did not faint or feel the need to be sick.
Determined to be a good husband and leave with a good reputation this time, I stuck by Heather’s side. Unfortunately the seizure left Heather unsteady on her feet so I escorted her to the toilet. Within the cubicle I glanced in the mirror and to my horror saw a slightly altered looking reflection staring back. A small peely wally bloke with very blonde hair, black eyebrows and a large black handlebar moustache.
Once again, I looked like a total muppet.
Back in the hospital bay and after completing the numerous tests the consultants agreed Heather could return home, provided she was with a responsible adult. The doctor’s tone suggested this was more of a question, rather than an acknowledgement of my presence. I then explained the reason for my strange appearance to which he replied “I did wonder what that was all about”.
We left the hospital at 3 am.
The next morning we were up at 6.30am and set off as planned. Heather insisted on going but I did make her promise that she would go straight back to hospital if she felt unwell.
Then Heather did what she always does, she threw her cape over her shoulder and flew over to East Fettes Avenue. Nobody at SITC would know that her super powers had been temporarily affected by a dose of kryptonite the night before.
Being a fancy dress tournament there were a lot of people dressed as super heroes. Little did they know a real one was selling their raffle tickets, making the day run on time, oh and raising over £10,000 for Maggie’s!
Plans for 2020 are already underway. If you would like to be part of STICK IT TO CANCER next year please follow FUCANCER to be kept updated on all the events.