Stepping into the great unknown

Had my meeting with my oncologist today on my situation and I can honestly say that over the past 2 weeks or so since being told I was Stage IV in September last year I have been the most uneasy that I've felt. I don't like not knowing what lays ahead for me and things are progressing and changing at the moment that I've got no certainty. When I was on Vemurafenib although it only worked for me for 9 months I knew where I stood and that it was working for me. Now my tumours are growing again, new ones are cropping up and there's no certainty that the medication will work for me. I'm impatient at the best of times and this unknowing is not a good feeling. The new meds I'm on has a 10-15% rate of tumour shrinkage and a higher % of stopping any new tumours growing which I guess versus a limited chance of survival without it I should be hopeful for. There really are so many positive stories of Ipilimumab and how it's helped people globally that whilst it doesn't work for everyone there is that chance it will do for me.

So onto today. My pancreatic tumour has grown from 2.9cm x 3.5cm in May to 4cm x 5.5cm in July which whilst I think shows that Vem had stopped working by May as the tumour didn't shrink from my Feb to May scans that is stiill a 65% increase in size in 3 months. It's inoperable due to it's position as well but the registrar wasn't overtly concerned by it describing it as neither sizeable nor small so I guess I can take some positives out of that. As mentioned in my last post I have had 5 new tumours crop up in my brain which I really don't like. Whilst my pancreatic one may be more serious the thought of having something growing in my organ that ultimately controls me I just find really really disconcerting. Two of these tumours are small to moderate in size (measuring 9mm and 2.9cm) and three are very small. Or at least they were when I had my scan 3 weeks but I'm not sure if they've grown in that time as I didn't have them in May so they are growing at some pace. 

I was meant to have heard back from the Cromwell Hospital in London regarding whether I'm able to receive Gamma Knife surgery on these brain tumours and eradicate them either fully or reduce them sufficiently in size but in the 3 weeks since my previous appointment I haven't heard anything. This is going to take some time as I need to arrange an initial consultation with the specialist, they will then need to rescan my brain and then after that will need to ascertain whether I am able to receive the treatment and then after that I need to be booked in to receive the treatment so this is likely to take a number of weeks I'd expect. Just a case of knowing where I stand and whether I can receive it or not is all I want and then I can plan things this summer.

So all in all not one of my more positive posts. I've got the go-ahead (dependent on any erroneous blood results) to receive my second dose of Ipilimumab on Monday which is the new medication I'm on. I haven't received any side effects at the moment but apparently the more infusions you receive of it the higher your chances become of side effects - I don't fancy being in hospital with colitis so hoping that does crop up! The beneath picture is me receiving my first infusion. Sitting in a chair for two hours with a needle stuck in you really wasn't that hard. Plenty of Sudoku and reading!!

And as I've now been advised against flying for the short term (those coming to Lisbon do not fear I will get there by boat if I need to!) I need to look at train/ ferry holidays so who fancies a short city break or road trip soon. I need a holiday!!!

You win some, you lose some and sometimes you don't know whether you're winning or losing...

So it's been a couple of months since my last update and once again this update is something of mixed news unfortunately.

I'll start with the last few months - I've been on Vemurafenib (what I have always classed as my 'magic pills') since last year with a few breaks for radiotherapy or surgery but mainly I've been on it full time and on the full dose whilst also being able to go to work and not have any days off which I've been really proud of. It's certainly helped my parents having this case of normality and also helped me so that I haven't dwelled too much or just sat around my house doing nothing.

One not so good thing I've recognised however is nausea kicking in and even though I want to eat just can't physically bring myself to doing so. I've lost 11kg since March and am now down to 67kg which for someone of my height (6ft 1) is too light. I look ill and gaunt so have been put on these nutritional shakes and powders to try and bulk me up.

Last Tuesday I met up with my parents and mentioned to them that I just felt a bit off (headaches etc. ) which reminded me of how I felt before I got diagnosed with my brain tumours last year. I had my oncology appointment on Wednesday and was put in for an emergency CT scan which I got the initial report of on the day to be told there was nothing to report. Elation! A call from the nurse on Thursday at work however told me that that they'd missed two small tumours (6mm and 9mm) in my original tumour cavity and that I should stop taking Vemurafenib as it looked like it wasn't working - Kick in the gut! Then to top it off I get a call on the Friday that they'd taken a closer look and found multiple tumours in my brain and they needed to see me ASAP and because I'd already had WBR that I couldn't have further radiation on my brain. Needless to say last Friday I was just gutted. Told at work over the phone and having previously thought there was nothing exceptionally untowards I had to call my parents and then did as much as I could last weekend to take my mind off things - had a good friends 30th black tie birthday on the Saturday night at his which was amazing (David - top party - my champagne head appreciated it on Sunday morning!) and then just vented with another friend on Friday night (cheers Piers for being a good shoulder) and then Sunday lunch catch-up with close uni friends (cheers Ria, Leena and Amanda) meant that I was OK when I went back to work on Monday morning - yes work but as I said it keeps my mind off things!

Had the quick booked oncologist appointment on Wednesday with my parents present. Saw the Professor I'm seeing and basically in short I'm off the Vemurafenib which I already knew and being moved onto an immunotherapy drug called Ipilimumab with my first dose on Monday.(http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Ipilimumab.aspx). In short this involves ramping up the bodies immune system so it attacks the cancer cells. A 90 minute infusion of this drug every 3 weeks for 4 doses in total should be all that is needed. There has been good results from it and positively there is additional medication afterwards for me. Also which has really thrown me is that the Professor has said he doesn't agree with the Royal Marsden by saying I can't have Gamma Knife radiotherapy to zap the tumours in my brain as I've already had WBR he has a colleague who works at a Stockholm hospital and also the Cromwell hospital in London that is doing Gamma knife surgery on patients who've already had WBR and he wants me to have this treatment! So fingers crossed the detailed MRI scan I had today shows no more brain tumours and I'll be eligible for the gamma treatment as well.

Been told that I can't drink alcohol for the first 3 weeks of being on this new treatment - dad found that particularly funny and also that I can't fly due to my brain tumours so my planned holiday to Amsterdam next weekend has been cancelled (4th holiday cancelled in 8 months!). I'll be looking for boating and train holidays for the next couple of months.

Well that was a bit of a longer post than I thought but seems like I had a lot to say! Now all I need to find myself is a 'special friend' as my mother phrases it. I've had this conversation with my parents and my friends in quite some detail - I'd love to have someone that I can just slob out on the sofa with or have lazy days with but I can't deny that I've got 'baggage' and it would take a lot to expect someone to be able to accept and support that. Let alone the delightful world of judgmental gays where unless you're some muscle-bound, bronzed adonis with a full head of hair who is able to party until sunrise your chances are further diminished! But thats enough of my self-pity for one day!

A new fancy dress face mask - Oh and a bit of brain zapping!

So I realise it's been a while since I last updated this. Glad to say on the whole that things have settled down and normality (if you can call it that) has returned. I'm back to work full-time which I'm actually enjoying. Get a few strange looks from people when I tell them that I enjoy being a tax accountant but I'll blame it on the medication!

So I've had a great holiday in March to the US - San Francisco with 6 friends for 4 nights then to New York for 4 nights to stay with another 2 good friends. Really nice to get away from the UK and just forget all the past few months behind. Plenty of partying, good food and doing general touristy stuff - Napa Valley, Alcatraz, Golden Gate Bridge & Intrepid Museum to name but a few.

Side effects from my Vemurafenib have been coming on a bit more in the past few months. Namely my feet which are really quite painful - thickening of the skin so walking can be a bit painful and also an increased hyper-sensitivity to the sun so I just need to remember to where high factor (50+) sun lotion. I've forgotten that a few times and have burnt in literally minutes - even in January in the UK. Didn't think that one was possible! I've also noticed that I am losing my hair quite a lot which is a little bizarre - under arm, leg and arm hair have noticeably thinned and my eyebrows/ eyelashes have also thinned. Small things like a constantly runny nose and watering eyes are side effects of these. Tiredness comes and goes. I have found myself sleeping a bit in the afternoon and definitely no more big 4am finishes at the weekends (or weekdays and struggling into work!) anymore but at the end of the day I'm just a 29 year old guy and f*ck this disease is my theory. I'm still going to live my life and have a good time at the end of the day - off to Rugby 7's this weekend at Twickenham. Monsters is the theme so I shall be on the lager all day dressed as the Honey Monster. Sunday I reckon will be spent on my sofa but we shall see!

I was meant to go to Mykonos last week but went down with norovirus and spent 3 nights in hospital. I'd read about this in the news whenever an outbreak occurs but it was horrendous. Vomiting blood and not being able to eat for 2 days is frightening at the best of times. Luckily it was just norovirus and nothing more sinister with further tumour growth.

Back on the mend now and had a follow up with both St. Georges and the Royal Marsden today. St Georges was the results of my CT body scan which came back really positive - further reduction on my pancreatic tumour (down to 3.7cm x 2.2cm now from 4.2cm last time so starting 7th cycle of Vem) and whilst they noted that there were some nodules on my thoracic wall they weren't concerned about them so hurrah! Royal Marsden was not the news I was after to be fair.

I had an MRI scan of my head two weeks and got called back in today to be told that I had two small nodules in one of my original tumour cavities which they wanted to zap. Additionally, there were abnormal spots in the lining of my brain which have appeared since my last MRI scan in October so they want to do whole brain radiotherapy (WBR).

www.cancerresearchuk.org/cancer-help/about-cancer/treatment/radiotherapy/symptoms/radiotherapy-for-brain-cancer-symptoms

So starting from next Monday I will be having 5 sessions of WBR to try and keep these new growths at bay. Side effects have been explained to me - potential for tiredness, nausea and the likelihood to go as bald as a coot at least periodically but for those of you that no me the latter is not going to be a massive issue! I'm not too sure how to take this news - yes it's shitty that it looks like the cancer is growing more but it's good that they've caught it and have an action to hit it. I plan to remain going to work - mainly as it keeps me sane and doesn't let me dwell on things too much but we shall have to see. I guess quite selfishly but my social life doesn't look like it's going to be harmed - I was quite insistent on that but what with missing three holidays in the past 7 months already I've got 30th birthdays, wedding and departing the UK parties all coming up in the next 6 weeks that I would be quite upset if I couldn't attend.

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. .

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 (http://www.nhs.uk/ipgmedia/national/Macmillan%20Cancer%20Support/Assets/PICClinesMCS4Pages.pdf)

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 ( http://www.royalmarsden.org/cyberknife?gclid=CIv0ob7xzboCFa-WtAod9XkA-g ) 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.

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!