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!
Just before Christmas we recieved the news that the pathology from my recent craniotomy suggests my tumour is a stage 3. As a result on Monday 20th January I’ll be starting radiotherapy for 6 weeks and following this I’ll begin chemotherapy which I’ll be on for up-to a year.
The news knocked the wind out of my sails and left me emotionally exhausted. Thankfully, having allowed time to let the news settle and with the amazing support of my nearest and dearest I am feeling ready to take on the next climb in this marathon called cancer.
The biggest side effects predicted are fatigue, nausea and hair loss.
As always, I’m focusing on the positives: I am strong, I have an incredible team (medically and socially) and I’m prepared to give it all I’ve got. I’m really grateful to everyone who has been in touch to offer support.
A huge part of my coping mechanism is physical activity and I’m delighted to say my oncologist has not only given me the ‘OK’ but encouraged me to keep running. As a result the Funny Boy and I have signed up for RED January (www.redjanuaryformind.co.uk) and I’m now loving Park Run (www.parkrun.org.uk) On that note – if you’d like to join me for a run please get in touch. Always keen for a run buddy and it is a good excuse for brunch after.
Im currently researching wigs. If anyone has any experience and advice – I’d be really grateful for any pointers.
I hope 2020 has been good to you so far and I look forward to see you in the coming weeks and months. BRING IT ON!
We opened January with me still in recovery from my second craniotomy and within the second week I was back in theatre having my appendix removed. Unfortunately I picked up a post-op infection which kept me in hospital for another 10 days. I was the most physically sick I have ever been and lost a stone in weight.
Fast forward to Spring when I returned to work which brought it’s own set of challenges. The culmination of two craniotomies, one appendectomy and a second cancer diagnosis in less than five years was beginning to hit me. No matter how hard I tried to move forward I struggled mentally. After a long internal battle and huge dose of gentle encouragement from the Funny Boy, I finally sought help. I still find it easier to say I have cancer than admit I have depression but I have learned the more I talk about my mental health, the easier it is to manage.
June was a definitely a highlight. Thankfully I was allowed to travel to Toronto to see my brother get married and spend two weeks with my family. Upon return we had the fourth STICK IT TO CANCER which raised over £11k meaning since its inception in 2016 the festivals have raised over £30k for the Maggie’s Cancer Centre in Edinburgh.
In August, whilst walking Parsnip with my mum and the Funny Boy, my mum collapsed. I thought she suffered a stroke but when the ambulance arrived and she eventually regained consciousness, it was apparent my mum had experienced her first seizure. This day is a vivid memory filled with fear.
As we waited for my mum’s appointment with the Neurologist, my mind wrestled with facts over thoughts. My seizures led to my brain cancer diagnosis. The specialists told us that less than 8% of seizures are as a result of cancer so as always I stayed optimistic but I found myself imagining the worse.
October saw the very welcome arrival of Pumpkin. Another highlight! Our family has grown and our hearts are richer as a result. Parsnip has been promoted to big sister and the Funny Boy has dropped down another rung of the ladder in our home but everyone is happy.
November brought the news of another craniotomy. My mum had another seizure but this did escalate her appointment. We finally got the all-clear from her MRI scan which was a huge relief. She has since started anti-seizure medication and hopefully that means no more episodes.
In December I returned for my 3rd craniotomy and now I am here – recovering from major surgery, digesting the news that my tumour is a stage 3. Getting ready to meet my Neuro-oncologist next week and preparing myself for radiotherapy in the New Year.
The hardest part with all of this is seeing the impact it has upon my parents. They are at a point in life where they should be enjoying retirement and only stressing about where to go on holiday. Instead they are chaperoning me to appointments, babysitting me whilst I recover from surgery and doing anything in their willpower to make life easier for the Funny Boy and I.
Cancer is very isolating. Being unable to play hockey and exercise is a huge loss creating empty evenings and Saturdays. Surrendering my driving license means I don’t see my family or friends as much as I’d like. I really miss my independence and all of this has contributed to a rapidly shrinking social circle. Cancer really teaches you who your true friends are.
The ‘cancer life’ is a treadmill of appointments, making difficult decisions and dealing with the ongoing emotional and physical side effects. The Funny Boy and I are addressing issues the average couple in our peer group have never experienced. It is an evolving challenge which we are constantly adapting to. We sometimes imagine what life would be like without cancer and at times we feel alienated.
But, we do take time to appreciate how lucky we are. How grateful we are for our loyal friends who keep in touch and consistently show up when the sh*t hits the fan. For our new friends who surprise us with FUCANCER brownies, who send sausage dog decorations in the post and leave lovely letters decorated with Parsnip and Pumpkin illustrations. We are truly blessed and no matter how challenging the last 12 months have been we are reminded that in the worst of times, you often see the best of people.
On behalf of the Funny Boy, Parsnip, Pumpkin and myself I’d like to extend a huge thank you to everyone for your generosity and support. Wishing you & your loved ones a joyous Christmas and a new year filled with love, laughter and good health.
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!