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!
6 weeks ago I was preparing for my third craniotomy. Tonight I am preparing for the first of day of radiotherapy.
It has been a busy fortnight. The Funny Boy returned to work so I’m getting used to flying solo again. I continue to visit @maggiescentres to help prepare for the upcoming weeks and months, and I have started wig ‘shopping’ which is proving to be a surreal experience and really testing my decision making skills. I am hoping I’ll find something I like this week.
Over the last few days I have been blown away by family, friends and colleagues who have shown me their support. From a surprise crew of runners from my hockey club at Park Run on Saturday to lovely hampers in the post and a ‘Radiotherapy Advent’ of treats to open everyday of treatment – I am a very lucky girl ❤️
I’m sorry for the slow response but I will reply to everyone. I want to say thank you and let you know your kind words of encouragement mean so much!
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.
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.
I had a comment on an earlier post where someone asked:
‘What are you complaining about? You still have your hair’
Firstly, I would like to apologise if my blogs and updates are interpreted as me complaining. I try to be matter of fact about my diagnosises and use them as an opportunity to raise awareness and funds. Ultimately I am very aware that unfortunately there is always someone worse off so I would hate for anyone to think I am moaning.
Despite having three tumours I have been lucky in keeping the majority of my hair. The exception being the location of two scars spanning a combined distance of 12 inches on my head which are easily hidden. Oh, and the brief period where radiotherapy caused all the hair around my pelvis to disappear.
My treatment for cervical cancer saved my life but it did cost me the chance of having children biologically. Admittedly, I find this really difficult but with time I have grown to accept it. The Funny Boy and I were still determined to have a family so we looked at our options and decided adoption was our preference.
We researched agencies, attended information days and discussed it with my medical team. Understandably, health is a factor that needs to be considered when a couple are adopting. I was told by my oncologist in August 2017 that the likelihood of cancer returning was the same risk as anyone else which was a great sign for us to start the adoption process.
Unfortunately everything changed in May 2018 when I was diagnosed with brain cancer. Brain is one of the most challenging cancers to treat and as a result it is unlikely I will ever be in remission. Regrettably the consequence of this is the Funny Boy and I are not eligible to adopt.
With another craniotomy and radiotherapy planned in the New Year – it is envitable that I will lose my hair. I am sure it will be difficult but I doubt it will be as painful as realising The Funny Boy and I will never have a family.