Posts

Peace of Mind: sort your life out

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The title of this blog post may lead you to believe that this will be a morbid post;  but in fact, what it is, is a message of extreme importance and if you can get these things sorted, it will give you, your family and your friends true peace of mind way beyond your lifetime. In this blog post I will discuss the following subjects: Making a Will (>18y/o)  Lasting Power of Attorney (LPA) Talking openly about Organ Donation A brief introduction in simple terms: I wanted to write this post because I believe as a society we find it hard to talk freely and openly about our own desires for end of life care/Organ Donation. Some of us are in denial that death will ever happen to us (it will, sorry) and some of us don't even know it's possible that you can plan or dedicate someone special to help make decisions about your end of life care. How amazing is that? It's not only much easier for your medical and legal teams but also for your family, friends and YOU

What climbing Ben Nevis is really like...

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Bring a woolly hat they said! First of all I'd like to start with a thank you to all who donated! we're so close to our £5000 target for The Brain Tumour Charity so please keep donating at www.justgiving.com/moneyforbrains Okay, so it does usually rain in Scotland, especially up high in the clouds...but we had a fluke day of perfect clear skies and 20 degrees Celsius at base. In the above picture it is 8am and we're in full weatherproof gear for the predicted thunderstorms on Saturday 10th August 2019! I've even got my waterproof trousers on. We set off from the Tourism Centre at the base of Ben Nevis (Glen Nevis) at 08:30, here, there are toilets and the opportunity to fill up your water bottle. You start off in a farm field track amongst the mountain sheep which prepares you for the loose rocky path that continues for the duration of your climb. This route is called the Mountain Path or Tourist Path; it is considered easy/mild for novice climbers like us.

Communication between the brain tumour patient and their family and friends (part 2)

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In this post, I will be discussing the more intrinsic 'side-effects' that run alongside having a brain tumour. Some people may find this level of honesty triggering but I believe it is important to be honest with an audience who do not know what it's like to be the patient. Scars and bald patches: A lot of people who have had brain surgery will have a lifelong scar on their head; I have no doubt that you will have seen one before. Some are big and cover one side of the head to the other, some are small, some are healed and some are fresh wounds. A lot of people, like myself, are inoperable and do not bear one; but we may have a bald patch due to radiotherapy or various chemotherapy treatments.  Scar after care can be tricky sometimes: they can be itchy, dry, oozy, stretched, keloid, hypertrophic or even be numb. Some patients forget they have them and some just can't. Everyone' s healing process is different and this is why they vary so much in aesthe

We're Climbing for a Cure!

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On the 9th to the 11th August myself and a large group of friends & family will be climbing Ben Nevis in aid of The Brain Tumour Charity: we want to find a cure, improve quality of life and raise awareness of Brain Tumours! All Brain Tumours are still currently incurable which is incredibly scary but especially when yours is inoperable too. There have been little to no advances in Brain Cancer Research since 1980, yet it is the biggest killer of all people under 40! Please help me find and fund a cure that can prolong my life and the lives of so many others too.  Having a Brain Tumour is just like embarking on a climb: it's an uphill battle with unexpected moments of intense fogginess. You're carrying heavy baggage throughout the journey and you're always wary for the next trip or fall; you just hope someone will be there to pick you up. As there is currently no cure, having a brain tumour is a lifelong journey with peaks and troughs just like a mountain. I was

Mental Health Awareness: Panic Attacks and Anxiety

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This is quite a personal post this week. I had a really severe panic attack in the middle of the night where I genuinely thought I was dying or about to have a seizure. It started with a headache that wasn't being controlled with any painkiller; including codeine and Amitriptyline. My brain tumour is something that frightens the life out of me anyway so when I can't control a headache I often jump to conclusions.  I realised I was on blood thinning injections that have been known to cause aneurysms in Brain Tumour patients so I basically concluded I was having one of these and was about to start seizing. Commence the rapid heart rate, high blood pressure and shortness of breath. It literally felt like my lungs had disconnected from their affinity for C02 and only my gasps would keep me ticking.  I was genuinely so frightened and it's bizarre to think that this all comes from the thoughts and fears in your head. My headache had already gone by this point and

Communication between the brain tumour patient and their family and friends (part 1)

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Last weekend, myself and 20 other Young Ambassadors of The Brain Tumour Charity met for the first time. It was both fascinating and emotive being around so many other young people like myself who were so heavily affected by Brain Tumours. Most impressively, it was amazing to experience how motivated we became to make a massive difference in the world of brain tumour research. We all had the chance to share our stories, the amount of variation in these was astounding: every brain tumour story has it's unique differences and certain sets of challenges. We were able to help each other through these thought processes and contribute whatever advice or lessons learnt from experiences that we had had. One of the major issues that almost everyone had a resounding issue with was the communication between the patient and the family and friends. In some cases it felt awkward, in most cases it felt un-equipped and in a few instances patients were left isolated. We felt this really need

My brain tumour turns 1

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It's been a full year since my diagnosis and if I do say myself, it has actually been overall a good year. Going into this journey, especially with the state of shock not wearing off for a few months, and no sense of expectation for my future...I feel like I've achieved quite a lot in 12 months. Being a very practical person, I remember the first thing I did was sort out my finances and name my LPA's so I didn't have to worry about anything should I have a worst case scenario. I found myself worrying a lot more about living as a 'vegetable' than I did about dying. I'll be the first to admit that this journey isn't the easiest but there have been so many fantastic things that have come out of Year 1. Having this Brain Tumour has opened so many doors for me that I otherwise would never have explored. I truly believe that my quality of life and the quality of my relationships has improved so much because of it. I really live in the moment and enj