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Worried and nervous

I’m wondering if you can really tell much from CT scan results. I’ve lost count of how many pills I’ve taken today to cope and I’m feeling really unwell.  I’m not sure I can wait until Wednesday for my MRI scan because I’m feeling so light headed and I’ve got a funny taste in my mouth. I’ve been sleeping a lot today and I’m going to try and sleep again now to cope. I really don’t know what to do. 

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Very sleepy day

I’ve been asleep for most of today after suffering with vertigo alongside terrible fatigue this morning. I am now starting to feel less dizzy but I have significant heat and pain where my craniotomy scar is.  My headaches are being controlled relatively well with regular paracetamol which is encouraging. I’m still concerned however because something definitely doesn’t feel right and I’m in a lot of discomfort. I’ll just have to sit tight and wait until Wednesday! Anonymous response from another brain tumour patient about my situation with the MRI scan-  ‘Apparently only a treating consultant can order an MRI – I’ve had the same problem which is partly why I don’t live in the UK anymore. Everyone goes on about how wonderful the NHS is, but I’d be dead by now if I wasn’t so pushy. Do you have someone watching you at home? I would bombard your oncologist and neurologist’s secretary with calls monday and till they’re on it. failing that, back to a&e 🙁 – good luck.’

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Quicker MRI brain scans needed

As you can see even my hospital bed was surprised that I couldn’t get an ‘urgent’ MRI scan until Tuesday at the earliest, even if I had suffered another brain haemorrhage! The doctor I saw in A & E added to ‘keep in mind it’s also the weekend and we don’t operate MRI equipment at weekends.’ I can have as many CT scans as I like though because they are much cheaper and the NHS is trying to cut costs. I won’t name the hospital because I could tell the staff were just as frustrated as I was by it all! Kind of regretting this post as I love the NHS! It’s a massive shame though and quite sad.  Luckily I feel as though I can hang on until my routine MRI appointment on Wednesday. It will be my first scan at the brilliant Charing Cross Hospital. I’m actually looking forward to it in a bizarre way despite being anxious as a result of my recent symptoms. 

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In discomfort but hoping for a better day

I realise that this isn’t the typical, ultra positive, sometimes humourous cancer blog that I see from others but I do have an important message that can sometimes get lost: NEVER BE SCARED TO SHOW THAT YOU ARE SCARED. This doesn’t mean looking for sympathy but to me it means showing all sides of cancer so that people can show empathy through greater understanding of how you feel day to day. This is challenging because obviously you would want to be seen as you and not a disease which is completely understandable and the right attitude to have!  To me it’s about balance, I post positive and negative. At the moment it’s negative which probably isn’t great to read but when my symptoms are under control I do some really fun, positive stuff! Willow Foundation sent me to the Arsenal training ground not long before my bday for example and it was an incredible experience! I have had a lot of great experiences and I’m very thankful. At the moment my headaches and fatigue is so bad that I can’t get out of bed so I’m reflecting on the good days from this year. With Alexis Sanchez. Watching him train was brilliant Meeting Kieron Gibbs, one of my favourite Arsenal players Ellen Macarthur sailing trip Bournemouth with Youth Cancer Trust In Liverpool for a conference on ketogenic therapies for neurological disorders. Cooking with Youth Cancer Trust in Bournemouth. Age range is up to 30 which is unusual but fantastic. With David Seaman at The Big Match With my nephew.  With my neice, cancer makes you think about kids and relationships a lot if you’re young and single like me- in good ways and also very sad ways.  It is very important to let go of negatives but here is another…

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Anxious and frustrated

I tried to go outside and now I’m in bed exhausted in a lot of discomfort. I couldn’t even walk in a straight line and felt as though I was going to feint. Now I’m sat in bed and I feel as though I’m on a boat, something isn’t right here. I have a scan for next week but I’m trying to get it done sooner.  I didn’t look too confident on my way out. 🙁

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Hospital again

I’m collecting too many of these! Just came back from hospital, feeling very groggy with a splitting headache after an unusual seizure but the CT scan results showed no bleeding. I had a feeling this might happen after nearly having a seizure in public a couple of days ago, stumbling around confused. I hope to get my MRI scan over and done with soon because I still have worries and concerns. 

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Exhausting!

Today was exhausting but productive. I did a lot of walking which is always tough but I surprised myself with how much I was able to do. The other day someone told me not to worry too much about my next MRI scan because I’m LOOKING healthy. I get this a lot and although I explain it to people so often people clearly just don’t listen. I had my brain haemorrhage just after being told I look very fit and healthy so it means absolutely nothing and it upsets me if I’m honest because it just shows ignorance. Obviously it’s really nice to look healthy but at times it’s not so helpful when I’m having a bad day. Invisible illnesses are challenging for most to understand but if individuals aren’t willing to listen it becomes impossible. Earlier today I became a member of The Berystede Spa which was quite nice as a treat to myself and afterwards I went to the job centre to see what work options are available to me. At first I felt guilty about pampering myself but then I thought I’ve had such a shit time and some of my good friends have lost their ‘battles’ with cancer this year so I thought why not! I don’t normally swear so I apologise but I get so sad and angry whenever I hear this kind of news.  Back to the job centre… I must have had the worst poker face ever because the advisor I spoke to could tell I wasn’t really ready just yet for work and advised me to try something voluntary first and see how I go. It also made me realise that I would have 0 confidence back in a work situation and I need to gradually build up to it as I…

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Strange time to be wide awake! Keppra?

Determined to lower these bloody epilepsy meds again! I always get the ‘rare side effects’. I’ve finally snapped out of my zombie like state and it’s 3:45am.  It also appears to put me in extreme emotional states at times. I have a history of depression which I don’t usually talk about but I think this contributes to me experiencing the mood disturbances that people can experience when taking Keppra. I take the unbranded type now because the government is trying to make cuts on NHS spending. I received a letter about this. 

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Non eventful day today but that’s not so bad

I had a fairly quiet day today but felt much better than yesterday. I’m not really sure why because I still went out for a short walk but I’m guessing maybe taking my epilepsy meds an hour later due to the clocks going back an hour helped me in the morning.  I actually felt quite confident but then after talking for a while with a friend I started to struggle with thinking of words and concentration became more of an effort. It’s so hard to explain this to the person I’m talking to and I feel like a bit of an idiot because I can’t communicate effectively when it happens.  This evening I made chocolate Brazil nuts (90% cacao) just for fun so I can have snacks for the week. I have gotten into entomophagy recently so I’m hoping to do this with insects in future! I was reading about it in National Geographic and became curious to try it myself.

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