3rd December 2015- The Wee C

I've not blogged in quite a while. Mostly because I wanted to pretend I never had a brain tumour. I wanted to pretend none of this was happening. I wanted to pretend that the reality in which my tumour could return with a vengeance, didn't exist.

Then my hair fell out. 

Twice.

A reminder that this is real. 

I actually look like a cancer patient.

At 23, my body is broken and I'm bald.

And I didn't complete my course of radiotherapy because I became too sick. Medulloblastoma is a high grade tumour that returns. It could return whether I finished the radiotherapy or not. The being with not knowing is extremely difficult.

I'm posting today because I'm bald; because I hate being bald. I hate being bald and wearing my cancer hat. I experience genuine jealousy at other's lovely, long, lustrous locks.

Despite hating being bald, I won't hide it. It's winter, so my head gets cold a lot and my cancer hat plus a woolly hat is usually necessary. However, when indoors and warm, I won't hide my baldness- despite the funny looks. I won't hide my baldness because cancer isn't terrifying as many think it is. That's what I want to talk about today.

Everyone talks of 'fighting' cancer, 'standing up to' cancer as though it is animate. I hate the personification of cancer. It is not some evil entity, here to strike down and steal your family members. It's a horrible disease, that comes in many shapes and forms and its treatment can be quite medieval (especially for brain tumours). I won't hide my baldness because I'm not scared of cancer itself. And I want to show other people it's not something to live in fear of.

There are hundreds of other illnesses that break people, that take away their livelihood, that make people feel as though they have lost themselves; not just cancer.

I won't hide my baldness because it should be The Wee C, not The Big C. The Scottish Government is currently running a campaign to spread cancer awareness and reduce the fear associated with cancer, in an endeavour to get people to be more cancer-smart and get checked if something isn't right or indeed, routine screening. 

http://www.theweec.org #getchecked

1st October 2015 - Fraction 1

I had my first fraction of radiotherapy yesterday. I didn't feel anything during it but soon after I felt sunburn like prickling to my skin and a few hours later, saw my tea in reverse! Note to self- don't eat after radiotherapy!

I spent the evening in bed- needing help to drink and remove my own clothes! I've been awake on and off since 4am today because I feel so nauseous. 

Not sure how my second fraction today will go- especially since I'm nauseated! I'm not looking forward to that one!

I don't have anything witty or entertaining to say on the subject so I'll just leave it at that and thank you for all of your good wishes. 

17th September 2015

I'm afraid I don't have anything profound, meaningful or entertaining to say but I thought I'd better give an update after being sent up to see Mr I yesterday.

All my symptoms are simply a combination of my cerebellum healing and several medication's side effects! Nothing can be done about it except crack on with it which is what I'm doing ....

In other news:- having cancer is flipping expensive and involves filling out ridiculous forms! I still have no income because my ESA claim won't be processed until I inform the JobCentre of every date I had an over-night stay in hospital this year AND proof that I attended college last year and proof of the income I received whilst there. No idea how I'm going to prove that!

I'm already frustrated that I have to jump through hoops for this! 

16th September 2015

It's trivial but I didn't realise just how attached I am to my hair. And I'm jolly annoyed that I now have a ball-head! 

I have a wig but it makes me look like I've just stepped out of an 80's rock band. And I have 4 very nice 'cancer hats' but due to my puffy, moon-face they don't look particularly attractive.

I gave up dignity many weeks ago; I gave up my job ; I gave up being able to walk normally. I wish I could retain just one little part of me and I wish for that to be my hair! That way, at least a little bit of me would still look like 'me' ..whatever or whomever that is.

The dizziness had returned, with a vengeance. It feels as though I'm on a boat or floating in water and occasionally, as though I am spinning. Yesterday, I had to grab the sofa (whilst sitting), to steady myself mid-conversation! The clumsiness too, has returned; veering off to one side and banging in to things and people (much to a random lady's dismay, in Morrison's, yesterday). These things seem to have gotten worse, quite quickly, which is odd. Today, my neuro-oncologist is sending me to see Mr I - my neuro-surgeon - to check things out before my radiotherapy. I'm not sure what to expect from this appointment and I'm worried he'll be fed up of seeing me by now!

2nd September 2015

So, why did I start this blog?

1) In an attempt to journal my feelings about this situation and quit with the robotic stoicism! Hopefully, if I can connect with these feelings, my words might help someone else in the same situation.

2) To keep my friends and family up-to-date with what's going on!

3) To promote our fundraising and raise awareness of brain tumours. www.thebraintumourcharity.org

Today, I had an appointment with a counsellor with a view to coming along for a hypnotherapy session, to help me cope with the claustrophobia of my treatment. She was lovely and incredibly insightful and has already made some helpful suggestions. I have my first hypnotherapy appointment with her, next week and I'm confident that I'll be able to take tools away from that, that will help me cope with my treatment. Huzzah! 

1st September 2015

After a scrolling through a happy newsfeed of new baby pictures earlier, I got a bit of a sinking feeling and had a small wobbly when I saw a picture of said baby being carried out of the hospital doors.
It seemed a cruel jab to the gut, seeing new life being carried away from the hospital. A brand, spanking new little being,healthy and full of prospects - seeing this, as I prepare to embark on 6 weeks of radiotherapy, 5 days a week and then a lifetime of even more hospital appointments than I already had before I was diagnosed with a brain cancer.
I want to be that picture. I want to be walking out of those doors to live a life; free. 

I'd like to say I've lived but circumstance after circumstance after circumstance, have sucked the joy and zest from life. I suppose that is living but there haven't been many great moments in between and I thought I might get a few before death came a'knocking. I wanted to have lived and felt free.

My diagnosis is not a death sentence but it certainly shortens my lifetime considerably and turns any 'plans' I had upside down.

I'm waiting for this situation to bring me some profound moment, some epiphany, some new perspective but as yet that's not happened and for now, I am well and truly miffed!!

I'm not happy with the hand I've been dealt, yet at the same time, I'm so grateful for Ninewells. What a contradiction; I hate the place but I have immense gratitude for the treatment I have received and have the opportunity to receive.
 And an other bizarre contradiction; all of these doctors and nurses working hard to keep me alive but I am alive and no more. I want to be alive and living. 

I'm not scared of dying- everyone dies, that's life. What would be a tragedy would be a life un-lived.

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!