Wednesday, 11 December 2013

Return to the norm.

I realise it's been rather a long time since I last updated here. 

Rather a lot has changed. Namely that touch wood my head can be left in piece and I won't be having any more surgery. After my last update I was in hospital for a total of 16 days with the MRSA but what turned out to be rather a godsend was that I was in a side room with no-one else. 

My final operation that I had a couple of weeks ago and got discharged after only 2 days I was on a main bay. How nurses have the patience to do their job I shall never understand. After one night of incoherent ramblings in Italian from one direction and wind that could honestly kill from another direction I was ready to leave. Lucky that I only was in hospital for 2 nights after my second tumour was removed which I think surprised everyone namely that parents who were banking on a few more days of solitude at home I reckon. 

Still the staples have been removed (27 of them) and I reckon I have a greater scar than my first surgery site. 

For those of you who are faint hearted don't look beneath!

I was in London last weekend for a few Christmas meals with friends and back to London this weekend for further drinks and the theatre. It really is nice to get together and have a general chat and take my mind off things.

I've also been making plans for the return to work. This is going to be the interesting thing. Trying to remember what it is that actually do on a daily basis and my passwords. Forgotten each and every one of them. The first day back is going to be a productive day of emails and working out how to access my laptop I can foresee.

Had my twice monthly hospital visit with the melanoma team at St. Georges earlier today. I'm back on the magic pills (aka Vemurafenib) which I'm quite relieved about so finally my pancreatic tumour can start being zapped and hopefully reduced in size. The Professor that I see has suggested I go on periodic spells of taking the Vem tablets as there is research that points to the body not building such a resistance if you don't take them all the time so fingers crossed that will work. 

I've also started planning holidays for 2014. I figured that I could not go ahead and book things but to be honest sod it I don't plan on letting this rule my life and if I did I think I'd be rather frustrated. It's strange when I got diagnosed I used to be very carefree and generally lived life to the absolute maximum but since September I feel as though I've matured a lot (others may choose to correct me on this one!). There won't be anymore 5am finishes I don't think but being 29 I don't reckon that is all a bad thing. 

So if anyone is around in London this weekend let me know otherwise I shall be back full time at the end of December. .

Tuesday, 5 November 2013

Finally the light at the end of the tunnel!

So here I am writing this on a damp and murky Tuesday afternoon sitting by the window of my side room in the ward I'm in in St. George's (South London). My room is festooned with cards, bad DVDs (namely mine - read Top Gun and In Bruges) and a hell of a lot of magazines. The dentists/ doctors surgeries will be thankful.

So having prepared myself and I've been told I'll be in hospital for a minimum of 14 days so my MRSA can be treated and effectively cleared up.

I had another head op on Friday to clean and open it all up. The scar best still be good!

Turns out my existing head tumour (the one they were doing Cyber Knife on) has grown since start Sept from 1.8cm to 3.3cm. According to the Royal Marsden doctor that is perfectly normal and nothing to worry about in the timeframe considered. No other nasties have appeared in my brain which I'm relieved about. So they want to remove this tumour as its close to the surface - one piece of good news!!

Good news number 2 (results from my full body CT scan is that there's been NO change since the start of September. WOOOP DE DOOOO!! My Pancreas tumour has remained the same size and no other tumours/ mets have grown anywhere else.

One slight negative is that until my infection is under control and temperature stops spike I can't take my magic pills (Vemurafenib) so I am at risk of further and additional tumour groth. Still 14 days is all they reckon to get my infection sorted.

I've also received a belated birthday present from the NHS in the form of a PICC Line (

My left arm honestly looks like a pin cushion from all the attempted bloody and cannula's over the last week. No more! Woohoo.

Onwards and upwards and hopefully freedom in the next update!

The birthday that never was.

So having had a great couple of weeks back at home and feeling a lot more human I guess it was only right that my body played its own practical joke on me.

Having been up to the Royal Marsden last Monday (28th October) for the final fitting of my mask and my CT/ MRI scans ( ) I returned home feeling decidedly squiffy. Not thinking it was anything to do with my magic pills (hindsight is a wonderful thing!) I went to bed.

Tuesday morning. Hells bells. All I could do was scream and shout - soon got the parents up! and an ambulance called and off I was carted to me local hospital. Tempertature of 42. That'll be the reason for headache I had. SO P*SSED OFF. JUST WHEN I WAS SEEING THE LIGHT AT THE END OF TUNNEL IT AS IF MY BODY STICKS A BIG MIDDLE FINGER UP!

So back to hospital (via blood taken from the groin) - having had all my lymph nodes under my right arm removed 2 years ago I can't have any injections in my right arm meaning my veins in my left arm are buggered. Note to self refuse further groin injections. One way to take my mind of my headache!

So the doctors at the hospital I'd been admitted to Wexham Park in ghetto ville that is Slough (I surprised myself - it wasn't too bad!) now broke the brilliant news that I'd somehow picked up MRSA . How!!!

Guess it was time to cancel my birthday - I can therefore remain 28 until I'm discharged!

Next update to follow.

Wednesday, 23 October 2013

Accepted onto medical trials!

So the past month has allowed me to do a fair bit of thinking (and additional eating for that matter - 6kg of weight gain so far!) Damn these steroids and their ability to make me consume chocolate and biscuits like a horse. As I try to tell my mother this excess is neither good nor flattering for me. The sooner I can get off the devil pills (aka Dexamethasone) the better in my eyes! On top of their fattening abilities I've been told by the doctors not to drink on them. I have ignored that slightly over the past couple of days and allowed myself one small glass of red wine whilst at dinner with friends. Two-three hours to finish off a small glass of wine makes me feel so grown up. Haha!

So I've been at home for a month now recuperating from my shark attack. Cue Google searching and lots of self prognosis. Never probably advisable but it's opened up a lot of literature for me to read and has given me much more of a positive outlook

How I see my initial prognosis is the following:

  • Yes it's not the best news I've been diagnosed with. I don't think there are too many if anyone who can say they're settled with being given a terminal cancer diagnosis. 
  • I'm young (28 is still young - I refuse to accept that I am over the hill!) with besides the dreaded melanoma in a state of good health. Spoken to the doc and I should be able to withstand any of this medication they intend to throw my way better than people who have other illnesses as well or a great deal older. Bring on that fight is all I can say!
  • Now another weird/ bizarre ray of light that I actually am thanking my lucky stars about is the following. This little package of fun only reared its head due to my headaches and funky vision that I suffered from. Due to this I was then given a full body CT scan which made the little beauty on my Pancreas show up. How I see it as is that I hadn't had my headaches then nothing would have been done and my pancreatic tumour may of grown a lot larger to a state that it was inoperable. So I consider myself quite lucky in a warped way that I had symptoms. 
So here brings me onto a great bit of news. This  has definitely given me a huge spring in my step! My MacMillan nurse initially discussed a BRAF mutation that they are currently looking at for all Stage IV melanoma patients at the moment. Should individuals have this mutation (typically 40-60% of people do) it allowed them to go onto a new wonder drug (I shall refer to them as my 'magic pills' going forth!) called Vemurafenib. What this does is reduce existing tumours and stops new tumours growing in the majority of people that go onto it. Yes there are side effects - extreme photosensitivity (Factor 50 even in the winter sun in the UK - Casper the ghost is definitely going to become a reality!), fatigue, achy joints being the main ones. Not everyone gets side effects and some get them in a more serious state than others.

So good news is that I have the mutation. Hurrah!! Bring on the medical trials and getting my life back on track. 

So I'm off to London tomorrow to collect my first lot of magic pills which should be good! I've had a meeting with the Royal Marsden regarding having Gamma Knife surgery to operate on the remaining brain tumour I've got which hopefully should be done in early November. Good thing is I'll only be in for the day so no more hospital stays. Woohoo and the side effects (hair loss on the patch they target and it can grow back a different colour and different texture to what I previous had - I've signed myself to looking like a badger with an afro hair spot on the side of my head!) aren't bad at all!

I've been up in London a couple of times in the past few days. Catching up with friends over dinners, a few rather early nights out and also meeting up with work regarding returning in some form. To be honest I'm focusing on returning to normal or as close to normal as possible. Looking at the end of November at the moment but I really won't know until I start with the magic pills and see what the side effects (if any) are! 

So that's it for now. 29th Birthday in a 10 days time which I am focusing on. Dinner booked in Clapham and hopefully I'll be up a for a good night out afterwards as well. Just have to hope we beat the Aussies in the rugby. Shouldn't be too tough but you never know with the cheating Southern Hemispherites. Definitely something to focus on and look forward to.

And to top it off my shark attack (or rhino attack as one of my friends said) is looking far better than it was a couple of weeks ago. 

Any questions please ask away/ contact but I'm in a very positive frame of mind. Nothing I can do can change what I've got, I'm on the break through drug which has seen great results and have a great team of doctors working with me. I'm good, parents are now a lot more relaxed I think than they were and I believe I can beat this evil thing that's set up shop in me and from speaking to my melanoma specialists there are a lot more drugs waiting to be approved which has further boosted my mood!

Sunday, 20 October 2013

Operation time!

Tuesday 10th September will be a day that will stick with me for a while. A week beforehand I'd been going to work and continuing my life as normal to this day where I was rung at 10am by the doctor saying they'd found 'lesions' on my brain and that I needed to get to A&E with an overnight bag as soon as I could.
Parents were overseas in Cyprus for a month so that was an interesting call to have with that they probably should consider looking at flights back to London and little quicker that anticipated. Got myself packed to St Georges and after sitting about for a couple of hours I was in A&E on medication and having a meeting with the doctors. Life felt a little surreal - I mean here I was a relatively healthy 28 yo (besides a nictotine addiction that I am sure kept Marlboro in business) being told that my MRI scan from the previous week had shown 2 tumours on my brain - I guess that explained the headaches and that it was largely a sure fire conclusion that my skin cancer from a few years previously had good walkies in my body and set up home in my brain. F*CK was my first though.
Still they get me on some meds immediately to mean that I could finally see straight - Dexamethasone were these delightful steroids. More on them later but bugger me they make you eat like a horse (or at least do in my case!). Admitted to hospital and had a chat with the doctors and then had another scan - CT scan this time where another tumour showed up on my Pancreas. Never really a strong one at science I had no idea what the hell this organ did but hey at least they'd found it I guess.
Parents back from holiday and straight to hospital so operation time to be discussed and future plan of action.
What they intended to do was to weekend release me and then operate on the larger of my two tumours in my brain at the back on 17th October and allow me weekend release beforehand. Woohoo! From speaking to the doctors whilst the gravitas seemed serious they were very confident in getting it all out. They wouldn't touch the other one in my brain nor the one in my Pancreas initially and would just focus on this walnut size beast which was causing the balance and double vision apparently. We were off to removing the gremlins!
So the beneath is the remnants of the scar about 10 days after the beast was removed (just after stitches out). Really good actually - just going to have to come up with my credible shark attack story now!

Returned to the parents after my operation and have pretty much been sleeping, watching trash TV and eating them out of house and home. I've put on 3 kg in 3 weeks which is not good! More in the next update!

Where to begin

So where to start I guess.
It's now mid-October but if I backtrack a bit to the mid/ end of August that's probably the best to start and take it from there.
Giving a quick a overview I was diagnosed with Stage II melanoma in Summer 2011 and had my lymph nodes under my right arm removed as well as a good few Frankenstein scars on my back. Besides the regular 3 month check ups I attended at St Georges in Tooting I guess I stuck my head in the sand and thought I'd beaten the dreaded 'C' and wouldn't have it affect me again.
How wrong was I to be!
I'd been having headaches on and offer throughout this summer. I didn't really think anything of them besides probably that I was burning the candle a little bit too much at both ends. 4 am finishes most Fridays and Saturdays usually accompanied with a skinful and little to no food would probably catch up with me at some stage!?  Anyway I mentioned it to NHS Direct and got told nothing to worry and spoke to my doctor and got told the same so pretty much put them to the back of my mind. I had an appointment for my skin clinic and thought I'd just mention it to the Doctor that I regularly saw and what I good thing I did!
She mentioned to keep a check on the and she'd contact me 2 weeks later when I returned from a break to Poland with some friends and follow up with me. Long story short I did still have these headaches but just took Nurofen to get rid of them. She got an MRI scan booked in for when I returned (Start of September) and within a week I was in on the operating table. By this stage my vision and balance had gone a skew-whiff. We're talking not being able to see straight and not being able to walk in a straight line. Pretty much like I normally felt on a Friday night yet when I first woke up in the morning. Not encouraging and made me suspect something was a little wrong with me! Google diagnosis became my new best friend which in reflection is never a good idea.