The Beginning of the End...

The title for this entry is intended to be a positive one. I began the radiotherapy yesterday, this was accompanied with the penultimate round of chemotherapy. So I'm into the final 7 weeks of treatment.

Due to the chemo being just one instead of three drugs on this round I requested that I come in to hospital as a day patient rather than having to stay in over night. My request was met, but I was warned that it would be a 'long day'. So, I began treatment yesterday at 8.30am. I was taken down to the Headland ward and escorted to my chair. The Headland ward is clean, bright and very modern, a big contrast to what I've been used to on Lowan.

The next round of Chemo instantly got underway with 1hr of hydration. This is to help protect my liver and kidneys through the process. Cisplatin is the name of the drug being used and carries a wealth of nasty side effects, but is used in this case to help attack the tumour and heighten the cell killing effects of te radiotherapy process.

I'd read a few studies and medical papers that had stated that up until only a few years ago I would have received only radiotherapy in my case. Recent studies had confirmed that the use of Cisplatin alongside the RT gave much better long term effects, giving the patient a far higher percentage of both cure and lack of recurrence over the 5 year remission period... good news.

As I'm sat in my comfy electronic recliner I start think of ways to break up what will be an 8 hr day sat in this chair waiting to be shot at with beams of radio active energy while being pumped full of super toxins. One of the nurses mentions " it's a long day for you, but it's has to be better than staying in", I agree and tell her I'm thinking of it time wise as a flight to New York. She bursts out laughing and says "we've never been compared to air hostesses before!". With that the ninety year old lady next to me replies "that being the case, do you have a gin and tonic?"

I embark on the best time killer of all... sleep. It had been a late night and an early start, so I was pretty worn out, and it could just be phycological, but as soon as they hook me up to the chemo I always seem to flake out. I wake up with the sandwich lady doing the rounds, I take a chicken salad sandwich and scoff ot down, although I kind of know I'll be seeing it again soon!

Two girls in jeans and black t shirts arrive pointing a wheelchair my way... the main event looms. "It's time for your radiotherapy Mr McQueen" one said. I'm placed in the chair and wheeled down the hallway to the RT section. I have a brief interview with a student nurse regarding any concerns I may have regarding the treatment and then I'm taken through the "machine". I'd been given a mouthwash type medication during my last meeting with Dr Collinson, the aim of this was to help protect my saliva output during and post treatment. I took a slug, rised it around my mouth and swallowed it.. eeeghh, swimming pools!

Having met the radiology staff, they moved me over onto the cold metal table. The head RT guy informed me that this will be the longest session of he treatment due to the need to set everything up, run some tests and make sure that all the planning and measurements are correct.

Meat Loaf's 'Bat out of hell' quitely trickles out of the rooms in built in speakers.... better than Diana Ross I guess. The mask is placed over my face and is so tight it feels like my head is going to pop. I can just about breath though my nose and get tiny short breaths through my mouth... Not one for the claustrophobic!, and then the treatment begins. I can't see a thing due to my eyes being held closed by the mask. I can only hear the succession of clicks and mechanical noises as the RT machines moves around me doing its thing.

After what felt like about 45 mins I was released. I was in a fair bit of pain, not from the radiation(yet), but from being compressed into the mask for such a long period of time. I'm assured that future sessions will be much shorter... I hope so.

I' m returned back to the ward to find that I'm the last person there, all the other day patients have had their chemo and have left the ward. I give Bethan a quick call and let her know that they are going to let my go at 6.30. She comes to collect me and we head off...sick bucket in hand.

I'm sick twice on the way home... so I head straight upstairs and get into bed, close my eyes for a second and then make a dash for the toilet, looks like this is going to be a sickie one!

Well wishes from Mike V

Who the hell is Mike V? your probably saying... and you would be right to do so because unless you've spent anytime in the world of skateboarding you wouldn't really know.

Mike Vallely is probably one of the most enduring characters in the world of professional skateboarding. I grew up skateboarding, and first encountered Mike V's skating in early Bones Brigade videos in the late eighties, and I watched through the nineties as he became known for his big and burly approach to skating, going bigger and faster and quite often falling harder than everyone else. The thing that truly sets him apart from everyone else is his unique style and his no-compromise approach to life.

... so whys he sending me skateboards? Well, I was completely unaware, but a friend of mine had been in contact with Mike via email and had mentioned my illness and had pointed him towards this blog. Mike read this blog and requested my details... a few weeks later a package arrives containing a skateboard deck from Mike's new company Elephant Skateboards signed with his trade mark slogan "Never Give Up".

I was blown away!.. and still am.

It's also so very cool that I've had lots of amazing things like this arranged by such good friends... it's done more than just raise spirits I can tell you.

Another awesome get well wish came from old school Cornish punksters "The Surgeons". A good friend of mine has recently become their bassist. I received a CD and set list for one of their recent gigs which was signed by the band with the message... "Motley who?", made me laugh!

I'm in for a mini bought of Chemo on Monday with the 7 week program of RT beginning on Wednesday. I really don't feel like I've got over the last lot of chemo, and have been struggling with a weird itching and swelling in my feet and ankles. All the same, I feel keen to crack on and have been thinking of different ways of breaking up the 7 week period so that It will pass as quickly as possible. The big hope is that I can get through this phase and recover as quickly as possible so that life can continue as normal... or as near as damn it.

Catch up...

Really sorry... I haven't posted anything up for two weeks!!! Its been a funny couple of weeks. The last round was very harsh in a different way to all the others. I had a lot more sickness this time and the anti sickness tablets just weren't working at all. There were some pretty radical taste changes in my mouth and my spit went like egg white... all stringy and weird, which made eating and drinking a very 'different' experience!

The sickness subsided over the last week, but I've still been left with waves of nausea each day since. We had my consultation meeting with the oncologist yesterday. My schedule that I'd been given at the start of my treatment stated that my radiotherapy was to begin on the 15th Feb, but I was informed yesterday that I has been moved back until the 27th Feb. I was assured that this will have no impact on my treatment. My thinking was that it will give me an extra week or so to get fitter and in a better state before the RT starts, so I can take a good running jump at it!

Once again I've had some really nice visits over the last few weeks the have served as a reminder of my awesome family and friends that truly have my back through this, but its also really helped keep my mind away from negative aspects of both the treatment and cancer itself.

I had a bit of a scare this week. I found a small lump just below my collar bone in an area known to be a secondary site for my cancer to migrate too. I was quickly assured my Dr Collinson that it was not a lymph node and is nothing to worry about... a big relief!

Each day in the last week has been spent sorting out the final bits of the work we have been doing to the house which has left me worn out by the afternoon. My sister and her family were witness to this at about 4.30 pm yesterday when I sank into an uncontrollable comma like state mid conversation in our living room.

I have re- found model making over the last few weeks as a way of relaxing and taking my mind off things. I haven't really made model airplanes for many years, but its been nice when I'm finding it difficult to sleep or if everyone is out in the day to sit with some music on and lose myself in it. Despite the circumstances its actually really nice to actually have the time.

And again...

I got back from hospital of friday afternoon after a massive amount of faffing about. There was some kind of audit going on that just seemed to be distracting everyone from doing what they needed to be doing. I guess I'm only seeing it from one side as all wanted do was get the hell out of there!

It had been yet another tuff couple of nights with no sleep due to the constant movement on the ward. It seemed that there were quite a few beds free and patients were being moved down from other wards to make space. This meant that there were patients on the ward that didnt have cancer. For example he guys next to me who had appeared during the night had lost his ear which had become infected and now smelt like strong cheese! Not the best when your fighting off heavy boughts of nausea.

Needless to say it was great to get home. I seemed to be allowed a days grace from the side effects of the chemo. Perhaps it was the blood transfusion, but the ill effects seemed to stay away for an extra day. It's also made a big difference not having the chest infection to battle with at the same time.

I think the worst part about this round is stuggling to eat. Everything tastes bad, leaves a bad taste and doesent sit right in my stomach. Its as though the food is a foreign body that is'nt meant to be in there. I've been making do eating the limited number of things that go in and stay down with least complaint. This means that once again ice lollies, warm chicken soup and cereals with a little milk are the staple.

I've been laid up in the spare room for pretty much the whole week this time. It's been painful hearing the kids come in from school and not having the energy to even shout "hello". Im feeling more like a prisoner than ever before at the moment. A prisoner in this room, but also a prisoner locked inside this constantly sick body. "Sick and tired" is my new tag for the after state that chemo leaves you in, because that's all I seem to be of late... Sick and tired.


I am slightly concerned that the anti sickness meds that are usually so reliable at keepin the actual sickness away seem to have lost thier effectiveness this round as I've been sick most days this week. I think that either my body is getting used to the meds or the accumulative strength of the chemo is taking hold... Just hoping it doesent get any worse. I refuse to be put back into that Medical Admissions Unit again, but I'm thinking about giving the hospital a call if things get any worse or don't improve by the weekend.

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!