29th August 2015- Post 2

My fundraising effort for Maggie's Centres initially aimed to raise £50 and it surpassed that greatly! My JustGiving is currently sitting at a whopping £545! Thank you so much for your generous donations!

Given the fundraising's success, I've decided to extend the page to remain open until the 1st of February 2016 and increased the target to £1,500. I'll be doing various things over the coming months to raise money, starting with a virtual Neal's Yard Facebook party next Saturday which already has had a great response. 10% of my personal sales will be donated via my JustGiving page.

Mikey's girlfriend, Becca is doing Sober October AND giving up sweets! Again, donations will come via my JustGiving page. Becca has said that if we hit £1,000 by Christmas, she will face one of her biggest fears - spiders - by holding a tarantula!!

Joining in the fundraising effort, on the 20th of October, Mikey and Matt will be waxing their facial hair and Matt will be shaving his head!

Have you got an idea for fundraising or would you like to do something to help? Get in touch! 

29th August 2015

Yesterday, saw me back at the Princess Alexandra Centre for what I thought was the final stage of my radiotherapy planning.

I sat in the waiting room and attempted to make use of a visualisation I use with my pregnant mums when I'm teaching - that and some Valium kept me somewhat calm.

I managed to lie in the scanner and felt more comfortable this time on account of the fact that 1) I wasn't sick today and 2) I asked the nurse to talk to me throughout the scan.

I got so anxious that at the final part of the planning when they took me out of the scanner to put pen marks on my body, that I began to feel nauseous - and it was pretty horrible feeling like that and having to wait for them to finish, whilst being unable to move.

My next appointment is in a fortnight. This planning session will be a simulation, with the radiographer and the neuro-oncologist. And it will involve me being strapped down in that awful contraption for an hour, as they do a "simulation" run of a radiotherapy treatment.

Due to the fact that my spine is being treated, this means that it's unavoidable for the radiation to hit my stomach which can result in nausea....so apart from my being terrified of being strapped down to the table for 15 minutes every day, I'm now nervous about how on earth will I cope with lying face down, on my stomach, completely immobilised and nauseated. 

I honestly don't know if I have the strength in me to get through 6 weeks of this. I know that my diagnosis should give me some new found zeal and passion for life but it hasn't and I don't have anything left in me to deal with it.  Whilst I'm grateful to have the opportunity for treatment, I really, really don't want to go through it- for a tumour that has a likelihood of coming back and I'm going to spend my 'life' having surgery and radiation. That is no life.

27th August 2015

The past few days have been somewhat hellish and I have no humour to sprinkle on the situation!

Following my lumbar puncture last Friday, I've become progressively worse with the spinal headache culminating in causing an adrenal crisis.. Which my body conveniently decided to have on my way to my radiotherapy planning. Coco-pops on the way back up is not so pleasant!

I administered my emergency injection with the help of mum and decided just to get on with the planning no matter how crappy I felt. . I managed to get the moulds made and fitted but then had to go into the CT scanner where I had to lie face down with the moulds strapped very tight to the table- you cannot move even a tiny bit, not even enough to speak. It doesn't help that I'm claustrophobic (Doctors call it claustrophobia but to me, it's a perfectly logical and instinctual reflex to hate tiny spaces or being pinned down) but the nausea from the adrenal crisis was still there and it wasn't really safe for me to be in the scanner like that for fifteen minutes so I've to return on Friday for the final stage of planning.

I really, really, really (did I say REALLY?!) don't want to have this treatment and can't bear the thought of my face being strapped down to that table but I know I have to.

I was feeling super grumpy and generally hacked off with the universe! I'm bald, puffy and my body quite clearly hates me! Sorry it's not a more positive post. .

Anyway, with the help of Mum, Péter,  jelly and crackers, I got through the past few days and today I have picked up somewhat and the spinal headache has almost cleared. Hopefully the nausea bids adieu before the final stage of planning tomorrow! 

Now that I've managed to get out of bed, Mum and I will be spending the afternoon doing something a bit more positive - writing wedding invitations! 

JustGiving for Maggie's Centres

So, I'm going to be bald!

The radiotherapy will cause me to lose my hair pretty soon after it begins. I've been advised to shave my head in advance, for reasons of comfort and to prevent it from going clumpy or growing back in patchy (unsure of the science behind that one).

Anyway, I thought I'd make a fundraising effort out of it and allow my brother (who is very keen) to shave it off in some entertaining way.

I set up a JustGiving page, with a target of £50 and in less than 2 hours that target has been smashed 340%!!  Your generosity is astounding!

Maggie's Centres are havens of calm and support, attached to or on the site of NHS hospitals. Our local Maggie's is beautiful, in it's architecture, atmosphere and location. It was nice to be able to go in and have a cup of tea in the calm, before my appointment with the neuro-oncologist the other day.

They've got a wealth of information and resources available and it was great to be able to speak to a staff member who had been a radiography nurse in the past.

Anyway, Maggie's centres are absolutely vital services so your donations have gone to a very worthwhile cause! I honestly didn't expect this level of donations! Thank you all, no matter the size of your donation.

I'll be holding a Neal's Yard Facebook Party on the 5th of September, which you can join in from the comfort of your own home. RSVP on Facebook and send me your address so I can send you a goodie bag of samples. 10% of the sales from the evening will be going to Maggie's Centres via my JustGiving page.

JustGiving Page

Neal's Yard Facebook Party

Melvin, my Medulloblastoma.

Here we are, exactly one month and one day since the MRI scan that changed my life completely!

Having been somewhat loopy for some time, I was sent for a routine MRI - which no doctor or myself expected to show anything but it was nonetheless done, to touch all bases.

Flash forward 4 days and I'm sitting in an office at the Ambulatory Unit, being told by an endocrinologist - who doesn't normally have to deliver such news - that I have a tumour in my cerebellum.

....Two days previous to this, we booked our wedding venue and confirmed we will be married on the 7th of November....

Within 20 minutes, I'm whisked by wheelchair up to a private room on Neurosurgery and I have 3 doctors telling me that I have a tumour, asking me questions, performing neurological examinations, ordering scans and telling me that they plan to cut my skull open and remove the tumour in 6 day's time.

The next 5 days is a bizarre combination of continuing to confirm wedding plans, organising my business, writing a will, handing power of attorney over to my mother and having -what I called- a strategic hair-cut!

Thursday 30th July saw the fantastic surgeon, Mr I , remove the whole tumour. The next few days are a morphine and brain injury filled fog but I recovered remarkably and unexpectedly well.

I've been incredibly lucky, in that these are the only neurological deficits that I have; I continue to have left sided weakness however this isn't profound enough for physio to be concerned. I feel as though I have a weight around my left ankle and I am dragging my left leg with me. Speaking is difficult - although if you heard me speak you wouldn't think I had any issue - it feels bizarre in one side of my mouth, as though I am trying to speak around an object. 

I was finally allowed home, where I need my mum or Péter to help me with basic tasks - which is unbelievably frustrating. The stairs feel like an epic expedition to the top of Kilimanjaro! Going down the stairs is equally awful- sometimes I slide down on my bum, others I lean on my right shoulder as I pathetically step down one-by-one.

On the very same day as I purchased my wedding dress and veil, less than an hour later, I was back on Neurosurgery to discuss the initial pathology results.

Medulloblastoma.

Originally 2.5cm but upon removing it, it was 3cm.

This is normally a childhood cancer but it is rarely seen in young adults.

Mr I encouraged me to name my tumour so that is why this blog is humorously entitled Melvin & Me. Nothing like a little alliteration to soften the blow of cancer!

Melvin, my Medulloblastoma.

I'd like to say that this has given me a new outlook and zest for life but I've been merely surviving this and no more. This past month has been a complete blur.
 It's been a massive, whirlpool of emotions for my family and friends but for me, flavour of the month has been apathy, numbness and stoicism. This has been interpreted by those around me as great bravery and strength but it is nothing more than dissociation from the situation.

Anyway, I thought I would keep a wee blog diary of my journey - as I'm about to begin a pretty long and arduous expedition to finding health again - if that's ever possible.

Next up, will be our first fundraising effort for the Maggie's Centre, Dundee.  My hair will fall out pretty soon after beginning radiotherapy but it's recommended that I shave my head beforehand so I'm handing the clippers over to my brother and hoping to get some donations in the process!