Lobe Yourself

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...

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 ...

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...

As a Neurosurgical Anaesthetic Practitioner I don't often get to see the post-operative side to the patient journey. However, I know that while my Neurosurgery Consultants give good pre-operative information to my patients, not all are as thorough when it comes to preparing for a hospital stay. Utilising my own knowledge and some fantastic online support groups I've devised a list of ways you, or a family member, can prepare for a hospital stay, whether it's surgical or not. Pre-stay: As much as you are comfortable to do so, inform your family, friends or work about what you're going through , ideally direct them to a charity information page to ease the explanation. Let them know which hospital you'll be in and the duration of the stay . Ideally arrange for someone to check on you ! If you have children then please contact the school and let them know what is going on. So many measures can be put in place to ensure they're cared for while ...

The consultation always comes and goes quicker than we expect. Sometimes that's because you've focused on some tumour changes, maybe it's because you're stable or maybe it's simply because your neurosurgeon isn't great at freely offering information. I don't know about you but I always come away and remember 1000 questions that I wanted to ask and will now have to wait until next time to. Whether you're on ' watch and wait ' like myself, an intensive treatment plan or its your first ever appointment, below is a snippet of a checklist devised by the Brain Tumour Charity so that you get the most information possible out of your appointment: Who is my Clinical Nurse Specialist and how do I get hold of them? A CNS is a very experienced Nurse who is your number one point of contact for questions, concerns and everything else to do with your care. They have the ability to refer you to other services such as a Councillor or a Epilepsy Clinic...

Most of us will be aware of the latest craze: Tumeric. But is there any truth in some of it's claims? The answer is yes and that's why it's recently featured in the UK's Trust Me I'm a Doctor. For those of you that are not aware of Tumeric, it's a slightly yellow tinged spice from the Ginger family that you would most likely recognize from a curry dish. The active ingredient in Tumeric is actually called Curcumin and to have any benefit you need to be having a daily effective intake of 500mg-2000mg per day. Benefits:  Antioxidant and anti-inflammatory effects - could help subside those nasty headaches Known effect on the treatment of Brain Tumours from recent  studies  including Glioblastoma in the form of cancer cell cycle arrest Apoptosis of cancer cells (death of cells) and beneficial changes in cancer causing genes. Tumeric has been shown to be absorbed into actual Glioblastomas which means it can break the blood-brain barrier  which is...

The journey of cancer is one of identity . Cancer somehow manages to strip you of everything you believe to be, and the real challenge is to once again define who you are. I once described myself as a student, a primary school teacher living in London and chasing her dreams . On the 15th of April 2016 I became a patient, a dying woman controlled by the cancer growing through her very core. I watched my life crumble through my hands. When you battle cancer, you realise just how strong you can be when you simply need to survive. I am now happier than I have ever been and it’s thanks to my cancer. When you are sat at the bottom of the well, there will come a day when you try to get back on to your feet and start climbing. You also soon learn who is truly there to help pull you back up, and those who just came to watch. My journey has been some what up and down and its not over yet. Symptoms: It all started on a night out with my best friend where all good tales do. I ma...

Many of you will have already had first hand experience of surgery and some of you might be expecting surgery at some point during your journey.  As an Anaesthetic Practitioner, I’d like to tell you what to expect in the anaesthetic room. On your day of surgery, a Doctor called an Anaesthetist will come and speak to you about what they're planning to do and the risks of whats involved. They might even ask you to show them the back of your mouth to see how wide you can open your mouth - they do this with everyone and it's nothing to worry about. They will check your details against your consent forms and make sure you're fit for surgery. Once it is time for your surgery you will be walked to the Operating Theatres. It is here that you will meet me: an ODP who will show you to your anaesthetic room and make you comfortable on a trolley/bed. I will then proceed to check you in to ensure you're the right person having the right procedure on the correct site....

I don't know if it's just me but does anyone have those really bad days when it comes to experiencing pain? I know for people going through chemo it can be achy bones. For me it's either head or neck pain, which is not related to my tumour itself but is related to the stress it causes me. Sometimes, for no reason, my pain can be 8/10 on a scale of 1 (no pain) to 10 (severe pain) and cause me to feel dizzy and exhausted. I've been to the GP; it is definitely directly related to stress and fatigue. Some of the ways that I deal with the most painful days: Drink a 250ml water when it starts and aim to finish another 500ml before the end of the day. Concentrate on good posture or if possible lay down with a hot compress on the painful area. Limit screen time Limit caffeine Take 500mg of paracetamol and wait for 20 minutes to see if Ibroprofen is required Take 20 minutes to have eyes closed (napping) every few hours How do you cope with your pain? ...