Bee Gees day job....

Following a night where sleep wasn't really a feature I finished up my hydration and was put on two of the three demo drugs throughout the rest of today. There was a short break for an hour around 2.30pm where I was wheeled down to the dungeon like radiology dept set deep I the bowels of the hospital. I was placed in my nice blue wheelchair in the waiting room where I wittiness a petty harrowing scene where a toddler was put to sleep (I guess to have an MRI scan too) in one of the curtained side rooms next to the waiting area. As you can imagine it was causing the little boys family an enormous about of distress. It just made me put myself I thier shoes and it's not somewhere I ever want to stand.

The waiting room was also a through route to other sections of the department, this meant that I got see the radiology staff going about thier daily duties. Then it hit me, there seems to be an abundance of blokes wondering around in dark blue smocks sporting huge beards and even bigger quaffed hair doo's it was like a Bee Gees tribute band audition was being held somewhere near by. I sat there for some time just watching everyone coming and going. Then one of said Bee Gees sauntered over and in a Kiwi accent announced that it was my turn to head into the scanner room. Grabbing the hadles of the blue wheelchair he pushed me a few doors down into a beige room with a large circular robotic looking machine in the centre. I'd seen this machine before and instantly thought... more Diana Ross!

Stood next to the machine was a tall but portly dude who was sporting the biggest "mud flap" tash I'd ever seen. Was this some kind of radiation protection thing, I wondered... Or was it some kind of code, an inner circle of professionals who identify status and pecking order through the power of thier hair.

I'm laid on a hard metal table and my shoulders are pushed down towards my toes via two sliding metal rods, the back of my head I'd rested in a transparent cradle before the net mask is placed over my face and then bolted down to the table fixing my head and neck tightly in one position. One of the radiographers mentioned that there may have been further shrinkage to the mask during the drying process, they wern't kidding! This thing is tight, to the point where I can't open my eyes or breath through my mouth. Breathing through my nose is shallow at best.

Lead filled pads are placed around my torso and the table is rolled back into the scanner. No Diana Ross this time, instead a local Cornish classical radio station, which is luckily is drowned out by the clunks and bangs of the scanner in operation.

About 20 mins later I emerge from the scanner and the mask is quickly unbolted from the table and removed from my face. The mask is made from a hard kevlar mesh, I sense that due to the masks tigh fit there has been some impression left on my face. A quick glance in a nearby mirror confirms what I'd thought... I looked like a Belgian waffle. I was wheeled back to the ward with people visible smirking at the mesh imprint on my face. It wouldn't be so bad but it dawned on my that I have to do this almost every day for two months!

I return to the ward and I'm hooked back up to the waiting chemo pump. I've been told that there will be a delay to my usual departure time in the morning due to having to have a blood transfusion before I leave. My red blood cell couunt is a bit low from the last round, so they want to boost it back up so im good through the next round.

Looking forward to getting back home, especially since "smoking man" is on the ward again and and is up to his old tricks. He was busted smoking in the toilets on the ward. This time he got a mouthful from all the other patients on the ward, maybe it will have an effect, but I dought it.

Last of the big four...

I'm sat back in Trelisk hospital this evening about to begin the last of the big four chemo treatments. Once again flanked by two old blokes who were puking in uniform sycrinisity on my arrival...there an overwhelming smell of urine and vomit, It's going to be an interesting night.

I had another meeting with Dr Colinson today to be assessed for this next round, he informed me that he had seen the scan that was taken on Monday. While this scan was slightly less detailed than the scan I will have tomorrow he informed me that there had once again been a dramatic decrease in both tumours to the point where he believes that the primary tumour site is now as small if not smaller than the one on my neck. Given that I can't even feel the lump on my neck anymore, I took this as great news.

As I think I've said before I'm really not relishing the idea of yet another round of chemo, but it's just got to be done. We had yet another conversation about the radiotherapy, and yet again I left feeling pretty concerned about the whole thing... Not so much the short term effects, I think I could get through anything if you know there's an end to it. It's the likely long term effects that I find difficult to come to terms with and the fact that some of the more serious side effects can continue for months and often years after the treatment ends.
Still... I guess when given choice of cake or death, your gonna choose cake everytime.

New Tattoo...

I had an appointment at Trelisk hospital this afternoon. I was almost late for this appointment due to my new van wheels being fitted, but made it by a whisker. I sat in the waiting room room of the Sunrise center at Trelisk for a good forty minutes waiting to be called for my appointment. In this time I sat and people watched the other patients and their families and/or carers coming and going. A few I knew from the time i've spent in Lowan ward having my treatment. it was funny, but I was the only 'chemo baldy' in the whole place. This is something I've been really aware of lately and have found myself feeling really uncomfortable in public without a hat... stupid I know, but what's really stupid is that I was feeling really self conscious amongst a bunch of other people that had cancer too, just because they had hair and I didn't. I think there's a funny kind of denial happening, where if I wear a hat then its less likely people notice Im ill, and I can go on believing (all be it temporarily) that Im not ill. The weird thing is that outside of the 10 or so days when the chemo is kicking the hell out of me I feel pretty okay. I like to think of myself as being well. This would be a much simpler task if it weren't for the tubes and lines hanging out of my torso or the lack of beard and hair that serve as a constant reminder every time I catch a glimps of myself in the mirror... that I'm a sick person.

So, I'm called into the meeting. I sit down in the small room with one of the radiology team, a really pleasant lady called Sue. We discuss the treatment planning and the conversation quickly diverts onto side effects and the long term and short term issues that are likely to arise from the treatment I have come to realise that they are painting a 'worse case' picture of the treatment side effects so as to prepare you for the worst, if it should go that way. I'm not too sure this works for me personally as I tend to leave these meetings even more freaked out that before.

As my questions ran dry our conversation came to and end and i was left alone in the room to wait for my CT scan and have my mask fitted. The mask will be used through out the radiotherapy to hold my head in the same position each time the treatment is performed. It consists of a kevlar mesh that is moulded to my face that can then be fixed down to the radiotherapy bench on which I will be laid.

I was asked to close my eyes while what felt like a warm flannel was placed over my face and then pushed and prodded into place until it began to set. I was then rolled backwards into the CT scanner and a scan was taken while i was wearing the mask. As i rolled out of the scanner the mask was removed and I got my first look at it, a perfect impression of my face in a strange yellow netting. I was told to lay still while the nurse marked a small black dot in the centre of my chest. This was then followed be the words "tiny scratch" as a sharp sting pierced the centre of my chest... that was it, my first tattoo! This tiny black dot will be used each time i have the treatment to line up the machine and ensure that the beam of radiation is entering my head in the same place each time.

I was then cut loose, and I was on my way. Next meeting is on Wednesday with Dr Collinson to discuss my next round of chemo. I have developed a Staff infection in the last week in which painful acne like spots appeared around my feed tube and the chest infection I though I'd got rid of came back with a vengeance. Hopefully the course of anti biotics I been put on today will stay down and finish the infection off, and the treatment wont be set back to a later date.... just really want to crack on and get this last one done!

Cake and Friends...

I feel like It's been a while since writing in the blog. I think the combination of the last round knocking me for six and the last week being so busy I've just not found the time. When I say busy, I mean in a totally good way. If we rewind back to week ago, everyone from the Cornish Trail Riders (MTB group) and a few other good friends got together to catch up over a meal at the pub where we usually meet up to go riding. It was an awesome night with a top turn out and many laughs to be had.

I feel like there has been an endless stream of visitors this week... not a bad thing. In fact catching up with friends old and new has gone a long way to lifting spirits and allowing me to actually forget about the situation I'm in and relax for a while rather than sitting around fretting or worrying about things that are completely out of my control.

I have to say the last round is still with me even now, two days away from starting the next one. I still get very tired doing the smallest of tasks and this cough has settled down, but still won't shift. We had some close friends stay with us over the weekend and I just felt really annoyed that there were just certain really basic things that I really struggled with. We took the kids for a short walk down to the Gannel river at the back of the house and it just about finished me off. I had to come home and go to bed for a couple of hours to recover... just flat out frustrating.

Having said that the weekend was brilliant, I had a great birthday and felt quite overwhelmed with all the well wishes and greetings... very cool, thank you everyone.

I go into to Trelisk Hospital tomorrow to have a plaster of paris mould made of my face and neck. This is so that they can make the mask that will hold my head in the same position each day through the radiotherapy. I will also meet the planning team as they begin to put together the treatment plan that will be performed over the 7 week course.

Well' as I've said, the final round of the 'big' chemotherapy treatments starts on Wednesday. I can honestly say I'm not looking forward to it... at all. I'm going to try and hold on to a couple of thoughts through the next one. The main one being that this is the last one before the radiotherapy starts on the Feb 15th and the other is that it brings me closer to the day when I can pull the zip up on a wetsuit and go surfing.

Positive Charge...

It might be a load of old cobblers, but I remember reading a few years ago that the breaking surf charged the air with positive ions and this was one of the many reasons that humans feel happy and contented by the sea... cobblers or not, it was certainly the case today.

I had driven to North Fistral just before dark last night and although the surf was small you could see the perfect bank that had formed in the middle of Little Fistral, which when struck by the perfect little waist high waves would real off seamlessly toward the rocks... I thought to myself, if it stays offshore that will be amazing when the swell picks up tomorrow.

I keep doing this... forgetting my current situation. Maybe it's my brain just taking a break by wandering off into denial, but I swear that given the chance and especially when I'm in the bounce back phase and don't feel as rough, I have a habit of forgetting all about it and thinking as I would before any of this ever happened.

Truth is, I can't go in the water right now, no matter how much I want too. The risk of infection and the two open wounds in my torso that carry my lines simply would not allow for this to happen with out serious repercussions... so for the next three months at lest, I'm landlocked!

I think it was at the very beginning of this blog that i wrote about how easy it was to push everything to one side when facing a situation such as a cancer diagnosis. It seems that as the dust has settled and the treatment is now half way through with strong results that I have started to glimps an end to all this, and see flashes of a life that lies beyond the treatment.

This was very apparent today, as I stood on the rocks as Little Fistral I felt like a super charged coiled spring. The excitement boiling inside me as the perfect head high waves broke across this perfect sand bar with the water lit up like chrome in the icy 4 o'clock winter sun. I was standing there like a one man football crowd cheering to myself insanely as each rubberized silhouette scratched into a wave and set a line and either emerged from the icy backlit barrel unscathed or was slammed into the ocean floor.

I had brought my camera down with me to see if I could capture any of this. I don't really know too much about photography, but I remember being told that one of the best zoom lenses is your feet. Meaning, why zoom in and out with a lens when you can just walk closer? This is true of most of the situations a "point and shoot" amature like myself will find themselves in, but for good surfing photography getting close to subject means one thing I don't have... a big telephoto lens. Anyways, not to worry. I scrabble past the dudes with the massive lenses perched further up the rocks and gingerly make my way down across the diagonal slate rock formations with the intention of getting as close to the line up as possible. I'm almost down to sea level when I decide that's far enough, I've almost slipped on my ass twice and two days ago I couldn't even get out of bed... this was close enough. I few sets roll in and I get a couple shots, realizing quickly that I'm still too far away and the baltic windchill is eating away at my knuckles, so I start the "rock dance" back to the van.

So the photos are nothing astounding, but it was so worth heading out here. I leave feeling re-charged, buzzing with positivity and thoughts of Summer time, and about being well again... positive ions?... maybe.

Dark Days...

Well... Have to say so far this round has been horrible! I'm not sure if my brain has used the time I felt okay after last round to forget how bad the first week of chemo is, or if this is the cumulative effects of the chemo building and kicking my ass that way.
Dr Collinson did mention in our last meeting that this next round my leave me feeling "tired", but I wasn't expecting 24 hr naps and not even having the strength to put a glass of water of water to my mouth. The community nurse arrived at the house on Tuesday to remove my mobile pump and flush my lines, I couldn't even sit upright! I guess the only consolation is that while I'm getting beat up, so is the cancer. It very hard to keep any kind of positivity when you feel this ill all the time, I had a chat with B this evening and I think I might need a bit of support to help get me through these darker times. I think as the radiotherapy looms with all of its potential pitfalls, side effects and physical complications I should arm myself with some proper counciling or guidance to help get me through it, as I can't really say I feel strong enough right now to just "take It on the chin" with out some kind of independent support. I think it's defiantly a conversation I need to have at our next meeting with the doctors.

I was also getting myself a bit worked up that Im not able to make auntie B's funeral next week. Its just impossible to make that kind of journey in this state. I really wanted to be there especially to support my mum, who is having a very rough time with it all at the moment. Fortunately my sisters are in that area and will be attending, so I know mum is going to be well looked after.

Anyway... Quite a short entry this one as very little has been happening other than sleeping and listening to the builders cut paving slabs outside the house for the past four days. Fingers crossed the bounce back will begin soon and I can claw back some sense of normallity.

Forever loved...

I find myself at a genuine loss for words to describe the sadness my family is feeling today... Auntie B passed away this afternoon following a lengthy battle against cancer.  My thoughts are with husband Mike, daughter Claire, my mum, my sisters, Jade, and Colin who along with us, loved her very dearly and will miss her forever.

My only hope is that her passing offers some kind of release from the pain and suffering she has endured over many years while battling this terrible illness.

Goodbye, Auntie Bett... forever in my heart, Ciaran x

Tuning Bad Times into Good times!

Having just returned from hospital, feeling pretty worn down, and as the nurse said as I left "nights like that feel like partying but with out the party!" I would have to agree.

Anyway, a large package was waiting for me on the doorstep as I arrived home... to my amazement I tear it open to reveal an awesome care package from the boys in the Cancer Bats!!! We all met up a few Summers ago while I was working as a surfing coach and as a break from their Uk tour we headed out for a surf over at Crantock, which everyone loved and a rad time was had by all! It's certainly a day that stands out in my mind, not just because I got to teach one of my favorite bands a little bit about surfing, but it was also a pleasure to hang out with such a decent, funny and humble bunch of people.

I should take this opportunity to explain to those who aren't in the know, the Cancer Bats are nothing to do with cancer... its just a name! I don't think raddness has ever caused cancer and that is all these guys deal in... so your safe!

So... I begin the after effects of round three's chemo assault armed with a barrage of entertainment, clothing and well wishes from Canada's finest, but I cant help thinking there are other parties who have had a hand in this. If those people are reading this I can't thank you and "the bats" enough, I know you know what this means to me... thank you all so very much!

Nights of the living dead....

The title of this post may sound insesitive, but it is aimed at my fellow inmates that im sharing the ward with on Lowan this round. A very different bunch from before a lot older and way more high maintenance then anything I've seen in here before. I'm flanked either side by two men im guessing in thier mid sevetites, who by day are pretty dormant, aside from the idiot to the left of my that decided to light up a cigarette at 3pm this afternoon... I was speechless, who thinks its okay to smoke on a cancer ward? Where does the selfishness end with some people... quite amazing! Perhaps its the steroids I'm on, but I thought today that if he trys that again I'm going to douse him with my bed side water jug!

So, it's now 4.47am on Thursday night. I slept from 10pm unill about 1.30am and have been awake every since, it was a similar story the night before. Really looking forward to getting home, seeing everyone and getting some peace. I'm on the second hydration phase having had two of the three chemo drugs over the last 12hrs. This phase is set to finish in a couple of hours, so I will be cut loose from the IV and hopefully get a chance to shower before the mobile pump is put on. Fingers crossed I can get an early break out of here, it's been a rough one this time. Not with regards illness in anyway, just the conditions on the last two nights!

On the flip side I met a really funny Scotish chap called Doogie. Doogie is suffering with an incurable form of Lukimia, but has had me laughing so hard I though my line was going to fall out! Unfortunately Doogie went home earlier today leaving me with the geriatric brigade.

Dispite being up at this insane hour, it has allowed me to catch up with folk in alternate time zones. It was nice to catch up with some old Aussie mates who I've not spoken to for very long time.

so... my hope for tomorrow is early release and straight line from here to my bed!

Scan Result and Round 3...

Okay... first things first. I had a meeting with the oncologist this morning to discuss the next round of Chemo (which will commence at 8pm tonight) and the results of last Thursdays MRI scan.

I'll be honest, I'd managed to set aside worry of the scan results. While we knew the lump on my neck had reduced dramatically over the first two rounds of Chemo. The effect on the primary tumor site was at this stage unknown. Sitting in the waiting room at the Sunrise Center I couldn't help contemplating the what ifs and maybes. We were told to wait in a small side room for Dr Collinson to arrive, which he did a few minutes later. Dr Collinson is a very gentle well spoken man, but someone who is very direct and straight to the point. There's no sugar coating or frilly edges to bad news delivered by this man. For me though there was only good news on todays agenda. The scan results have shown a two thirds reduction in both the cancer sites. To clarify (and i had to because I couldn't believe it)... thats only a third left!

I'm in Lowan ward at 8pm this evening and it feels good to be going into the third of the big four chemo treatments with this knowledge. Dr Collinson seemed enthused with the results and was happy that the side effects during round two had lessened. I just hope that it continues in this way as it feels like a huge leap in the right direction.

We also had a chat about the radio therapy, which will start in February. As I said before, no sugar coating. He made it quite clear that things will not be easy during this time as the treatment intensifies. I guess i'll cross that bridge when I get to it. One of the things they mentioned was the trouble patients put themselves in by not using their feeding tubes early enough in the treatment. He said that some patients see using the tube as "giving in" and result in further complications through lack of nutrients. I said I'd be disappointed if i didn't use it! So far I've invested so much time and energy looking after the awkward and uncomfortable piece of high maintenance medical apparatus. I'd be upset if its presence was redundant through the final leg of the treatment, but the way they were talking today that almost certainly wont be the case.

Anyway... I'm off to ready the essentials for my two night stay in hospital. Clothes, toothbrush, Mountain Bike/Surfing Magazines, Books (thanks Dave!) Ipad, Seabands and bumbag to put the mobile pump in when they cut me loose on Friday morning.

Peace. C.