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.
On Wednesday this week I finally met with my neurosurgeon to get the results of my 3-month follow up MRI scan.
As usual he uploaded the 3D images of my brain on the monitor and began to talk through the results. My surgeon is not solely responsible for my treatment. He is part of a Multi Disciplinary Team (MDT) which includes different kinds of doctors, nurses and other healthcare professionals working together as part of a specialist cancer team.
The MDT are confident the surgery has led to a 90% resection of both tumours – this is good news. The bizarre reality is I now have two big holes in my brain which were previously occupied by separate Astrocytomas. The not-so-good news is there is a ‘grey patch’ at both sites which could be inflammation and scar tissue or it could be leftover tumour. Unfortunately the imaging is not advanced enough to make the distinction. The MDT discussed options and have agreed that surveillance is best so I’ll be returning in August for another scan. If either of the ‘grey patches’ grow in size this indicates it is tumour and therefore surgery may be required
Overall, I would say this news is neither negative or positive. Yes, there is a small relief that all going well I won’t need any treatment for the next 5 months. But, beyond that who knows? I am effectively stuck in limbo.
When I was diagnosed with cervical cancer 5 years ago the life I knew pretty much vanished overnight. After ploughing through treatment I had to come to terms with a ‘new normal’ – one which included infertility, menopause, fatigue and a total loss of confidence.
Once again I am faced with the challenge of adapting to another new normal. There is not one part of my life that cancer does not impact. I can’t put into words how much it has stolen from me and I feel duty-bound to share how this really feels.
I am ANGRY.
I am FRUSTRATED.
I am SAD.
I am HEARTBROKEN.
It has been a very tough few years and the last 12 months in particular has been an epic challenge but I do believe in the saying ‘what doesn’t kill you makes you stronger!’
Happy FUCANCER Friday and apologies for the long pause since my last update. I would love to report that I have been sailing the Carribean, skiing in the Alps or encountering the big 5 in the Savana but I am afraid this bitesize update is quite dull. I suppose with all the drama we have had in the last 10 months (crikey – is that all? It feels much longer) I should be thankful for some peace and quiet.
In my last update I shared my frustrations and honest emotions in the aftermath of a second craniotomy. Literally 8 hours after uploading that vlog I found myself back at hospital wearing another operating gown as I prepared myself for an appendectomy! The surgery went well (Goodbye appendix!) and I was home within 48 hours but unfortunately I picked up a post-op infection which led to another week spent in hospital. On account of the infection I didn’t eat for NINE days. For those who know me well, I am sure you can easily imagine how challenging this was for me. On the bright side I did lose a stone in weight – a goal I hope for at the start of every New Year but the means in which it was achieved is something I would never recommend.
It took me another fortnight to get over the infection but I am delighted to say since then I have been exercising! Running, Bodyattack, weights and even a single session back on the hockey pitch. I have said it before and I will say it again – physical activity is the best medicine! Physically, mentally and emotionally I simply feel stronger.
So with 5 new scars (2 from the craniotomies and 3 from the appendix) I am in a stage of limbo once again. I have had my 3-month follow up scans and the plan is to meet with my surgeon again in April. That meeting will dictate the next steps. It is looking likely that I might need more surgery and following that a combination of chemo and radiotherapy. At the moment it is largely outwith my control and I have made peace with that.
There are a number of ramifications that the Funny Boy and I have had to deal with over the last few months. Those closest to us will know we were preparing to start the adoption process. Given my health we have made the difficult decision that this is something we can no longer pursue. Cervical cancer treatment left me infertile which is something I have come to accept but this realisation feels like another devastating blow. Forgive me for sounding arrogant but I know the Funny Boy and I would have been awesome parents but c’est la vie – it was not to be!
Anyway – back to the positives! I have been cleared to fly so I am looking forward to celebrating the marriage of my big bro and the lovely Katie in Canada! I am so excited to have two weeks away with my whole family! The Funny Boy and I have quite a few weddings this year which is great because it means plenty time to catch up with friends we don’t see often. We have also booked in a few extra special dates too. STICK IT TO CANCER is on track for the fourth year with the addition of two junior tournaments. Everything kicks off this Sunday for the Under 12s, June for the Under 14s and the adult tournament in July!
Before I finish I just wanted to say how much we appreciate everyone who has been in touch. The Funny Boy and I have been overwhelmed with how generous and thoughtful our friends have been over the last year. Even Parsnip has been the recipent of handmade, personalised gifts. You have made a challenging time much easier. From the bottom of our hearts – THANK YOU!
I am delighted to report that I am back home and reunited with my ever faithful sidekick Parsnip.
After much deliberation by the medical team I have returned with my appendix. The risk of seizures coupled with the damage caused by pelvic radiation makes my case a complicated one. I am due to return to the General Surgery team in the new year to discuss an appendectomy in more detail but for now my next surgery is Craniotomy #2.
In 2018 alone I have spent 20 nights in hospital, relied on 3 ambulance trips, benefitted from numerous appointments across a variety of specialities and been supported by a countless number of nurses. At this point, may I say I have NEVER met a harder working group of people than the NHS nurses; 12 hour shifts which include everything and anything from cleaning a range of body fluids, literally picking people off the floor, drying tears and so much more. I do not know how they do it but I remain in awe of their energy, empathy and ability to make the worst of times somehow better!!
Today is STAND UP TO CANCER. The Funny Boy and I were due to attend the Live Show in London but due to my recent bout of illness we were forced to cancel. It is only when you are faced with a chronic condition you appreciate how frustrating and devastating it is to be constantly losing out on opportunities and experiences. From the everyday things like meeting a friend for coffee, singing in your car at the top of your lungs or playing your favourite sport with your team mates to the life changing events like starting a family or going for that promotion at work. These are the things that make life and when you miss those it is hard not to feel like you are missing out on life.
Everyone faces challenges in their life but as long as you have your health you always have an opportunity to start again. This is the second time I feel my life has been put on hold as a result of badly behaving cells. In 2014 cancer stole my fertility; something I may never truly ‘get over’ but I am slowly coming to terms with. The struggle I am facing now is a loss of independence and an underlying fear of the unknown. It is hard and I would be lying to dress it up as anything else. Equally, I know things could always be worse.
Never, ever take your health for granted. For as long as you have it you always have the chance to do more!
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!
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?