A nice surprise...

Well... we all had an amazing Christmas. So nice to be in the new house, it was a mission, but we pulled it off. The kids loved Christmas day and I was so happy to be well enough to share it with them. We had a pretty quite day at home just myself, Bethan her mum and the kids. It was nice just to take things at a slower pace given how hectic the week or so running up to Christmas has been.

During the past week the kids have been off school and the weather hasn't been up to much so we've mostly just been pottering around the house and enjoying some really nice visits from friends and family. I've felt my strength return with each day and I'm welcoming the decline of the nasty cough I've had for the last few weeks. I've had both Flu and Nurovac vaccinations today, which is a relief. It's nice to have the extra protection especially at this time of year.

I was back for another 40mins of Diana Ross in the big white metal tube last Thursday for another MRI scan. The results of this scan will show the effect of the Chemo so far on the main tumor. We are set to discuss the results at our pre-chemo meeting with the oncologist next Wednesday. Fingers crossed the chemo is doing what it's supposed to and the suffering is worth while.

Many of you will know I love music. Many of you will also be aware of my love of 70's and 80's heavy metal bands. I think we all have a fondness for the music that we first came in contact with, the magical moment when you hear a song or a type of music and it becomes yours.

When I was ten I was given a stack of Lp's by a relative. These twenty or so records included bands such as Kiss, Jimi Hendrix, Led Zepplin, Jethro Tull, Thin Lizzy and AcDc. I would listen to these albums daily on an old record player that had been handed down to me from my uncle. It was at this point that my musical taste would be forever biased.

Over the years I have explored all different types of music, but in a strange and magnetic way I always return to the same genre. It's this music that has a life and energy thats hard to describe, music that makes you feel a certain way... alive!

Anyway... less of me trying to preach the merits of heavy metal. I received a package in the post this morning, my first thought was "nice... late xmas present!". I tore open the white jiffy bag to reveal a Motley Crue CD, a ragged piece of dirty paper and an envelope. Now... for those who don't know who Motley Crue are, aside from being one of the worlds most famous rock bands with a career that runs from the early eighties to present day, they are also the band that my dad would frequently point out wore more make up and hairspray than girls on the Boots cosmetics counter!

I opened the envelope, there was a "get well soon" card with a message and four signatures. The dirty piece of paper turned out to be the set list from the stage of the recent Motley Crue show in London. The slip of paper in the back of the packet read, "Hi there, Motley Crue wanted you to have this CD and card with their best wishes". My mind quickly flashed to a conversation I had had with my friend Mark. Mark does a lot of reviews and interviews for rock websites and magazines. He had told me to keep an eye on the post, following a conversation he'd had with Nikki Sixx the bass player for Motley Crue during a recent interview. Mark had mentioned to Mr Sixx that his friend was ill, he asked for my address which Mark had given him along with the address to this blog. I had kind of buried the conversation so as not to get my hopes up to the point where I'd forgotten all about it... but sure enough he came through!

In my eyes its and amazing two part gesture. One from the rock legend that doesn't know me from Adam taking the time to do something like this, and another from a very caring friend who knows how much this means to me.

Thanks Mark.

Interlude...

I realise the last few posts have contained not much more than me going on about the current round of treatment and its side effects. I would just like to take this opportunity to thank everyone for their continuing help, support and kindness. Most of all I want to thank my wife, without her love, support, positivity and care I'm not too sure where I would be right now. Thanks B x

I'm over moon to be feeling well enough at the moment to enjoy Christmas with Bethan and he kids. It was a short term goal, but a big thing never the less. I'm really looking forward to having a couple of "healthy" weeks to catch up with friends and family and see if I can grow some beard back!

Hope to see you all soon,

Happy Christmas everyone, and all the very best for 2012.


Ciaran.

Sea what?

Im sure I dont have to explain what nausea feels like,everyone will have had expeirienced it at some point. Aside from the extreme fatigue it's the dominant feature of the treatment. I've never been one to seek out alternatively or complementary medicine... never really had to before. The nausea that accompanies the treatment is so powerful that I started to look into other ways to combat it aside from the high doses of anti sickness medication. The sickness meds work up to a point, but there are just those times where I feel like I need a bit extra in order to cope, a back up plan if you like.

There are masses of anti sickness remmidies out there ranging from herbal concoctions to simplifying what you eat the way you plan your meals. One of the more interesting and perhaps 'kooky' ideas are are product called SEABANDS. They are a narrow sweatband worn around both wrists. Each band holds a small plastic ball that when positioned correctly presses on an acupuncture point on the inside of each wrist. These bands were originally designed for sufferers of travel and morning sickness, but I'd read that a few people had had sucsess when using them through thier Chemo treatment as an anti sickness measure.

It's been interesting thorough this second round how the experience of the first round has taught me so much about what to do and what not to do. What I need and what I most certainly don't... so, thanks to the mighty Amazon my Seabands arrive in the post. All I can say is so far so good. I'm still taking my sickness meds like clockwork, but in the last 24hrs I've not experienced any additional feelings of sickness since wearing the bands. I'm coming towards the end of the bad week that follows the treatment so is difficult to be 100% sure and there's always the placebo effect, but I think they are a worthy addition to my arsenal of anti sickness precautions for next time, even if I do look like and 80's aerobics instructor!

In addition to this, I got my MRI scan date through yesterday. Next Thursday will give us the first good look at how the treatment is progressing. I realised while opening this letter that this will be the first of many nerve wracking scans that I will have through the treatment and beyond over the next few years. I decided that it it's not something I can control, so I'm going to make a real effort to take it as it comes rather than spend all my time worring about it.

Wired...

I've been at home now for four days and I realised yesterday that I've not actually left the house. As I'm writing this its still a very dark 7.30am and I can hear the wind howling outside. Still... I'm determined to get out out in the fresh air today, even if it's a stroll up the street and back.

I had a much better day yesterday, it felt as though the side effects of the chemo were finally beginning to subside. I managed to stay awake for a good part of the day before crashing for a few hours around tea time and despite the odd bit of stomach ache it felt like my appetite was returning.

I've had this annoying cough for a few weeks now, the team at the hospital know about it and I've been put on anti biotiics as a protective measure through this round. I've also been really on top of my anti sickness meds this time which has made a big difference. It's weird how in a matter of weeks I've gone from being someone who would avoid taking pain killers and pills unless absolutely nessasary to someone who feels a bit like a walking chemistry set.

As with many families at the moment we are all suffering with coughs and colds of some kind. I've been told not to worry about my own families germs, but to take greater care when it comes to visitors who may carry infectious stuff (colds, flu etc). This is so difficult espesially at the time of year, but everyone on the hospital team has said that you must literally turn people away if they are ill. I haven't had to do this yet as everyone has been really understanding, but it doesent stop the high levels of paranoia that come with a depleted immune system.

On a positive note, the move has been a big sucsess and everything is settling down nicely, apart from the kids who are both giddy beyond belief! The new Sonos system was fitted the day before yersterday and I can't get enough of it! I spent severl hours yesterday scouring back catalogs of music...pure joy! I suppose people mourned the death of vynal and even the death of the cd with the soulless introduction of downloading music, but I suppose streaming music is adds a whole new level to that, but I'm only seeing the pluses right now.

Movin and a groovin...

Well, deep in the midst of round two, Im neither use nor ornament in our move to to the new house. As I write this were are pretty much in bar a few unpacked boxes. Bethan and her sister Becky have worked super hard to get us all in here for Christmas. I've been either shifting in and out of "chemo coma" or feeling ill/ sick, so have been confined to the big leather Lazyboy or "ladyboy" as Cerys calls it!

This run has been slightly easier though, but no less dark. Its so easy to hold on to positivity when you're well and everythings fine. The trick is trying to remember the good stuff when things are bad, which is a very different animal. Ive heard that the treatment can plug you in to thoughts about our own mortality. I guess when the chemicals inside you are destroying parts of your body on a cellular level this is only natural. The low points that this round have brought on some pretty herendous thoughts/fears. One of the things that's difficult to get away from is the nature of cancer. The majority of people I meet who have had or are living with cancer have had more than one incident. The recurrent nature of the desiease means that anyone who gets it will naturally be left living with the possibility of it's return even when they are in the "clear". It would be nice to think that this is treatable and curable, as the doctors have expressed. At the same time, knowing what I know of the treatment so far it's not a situation you would want to be battling on and off for ten years as some of the people I've met have been doing.

Its not just about living and dying, after all that's a certantiy we all face. It's about being well. It's about having the best out of the time we do have, whether that's prescribed or not. I think becoming this "poorly person" has made me realise more than ever what quality of life really means.

The last few days have left me with so little energy that a trip to the fridge has left my head spinning and needing to sleep for an hour after. The smallest task can seem like climbing a mountain and it can be difficult to find the mental strength let alone the physical. Its made being part of the growing excitement that Christmas and moving house brings virtually impossibe. This has to be the saddest part for me right now. Although I was treated to Cerys sitting on the end of the bed plucking her pink flying V ukelle and singing a Janes Adiction song to me yesterday afternoon... She's such a sweetheart.

Sick and tired...

...the title of this entry pretty much sums up the last 24hrs. It took me two hours to have shower this afternoon. Working through the complex maze of one handed manuovers so that i can hold the chemo pump while trying to wash and dress with out damaging the seemingly fragile cables and connections. All his was to be achieved through the weary "chemo funk". A tiredness that grips without mercy, de activating every fibre in every part of my body like a voodo curse. Having said that the odd window of opportunity will occasionally present itself where the "funk" will lift for a short time, somteimes and few seconds sometimes half and hour. Thease opportunities are siezed and used for drinking, going to the toilet and fetching anything I may need that won't be obtainable during the next paralysing wave of motionless nausea.

Food has also been a funny one today as I've seen the return on the "upside down" taste buds. Strong flavours are repellant to the point of causing sickness. It seems cold food is the only way at the moment. Ice lollies, and ice cream and fresh pineapple being at the top of the list for getting rid of the foul taste in my mouth caused by the chemicals. Keeping it simple and plain seems to work well too, jam and bread and a glass of cold milk seems to sit well. I'm very conscious of getting enough fluids as I'm spending such a huge amount of time sleeping, the last thing I want to do is end up dehydrated and back in hospital like last time!

Although the last 24 hrs have been a grind, I still feel confident that this time round is a little easier than the last. I was in a way worse state at this point on the first go.

This afternoon, and my worries and strains were once again put into perspective with the news that aunti B has been admitted into hospital with a serious infection. My mum has just headed home to pack to catch the early train north to be with her tommorow. My thoughts are with her as always.

Bethan has spent the last three days packing for the move tomorrow, which is all looking like its going to plan. I just feel pretty helpless not being able to chip in and help out. At least I'm much more independent than I was on the last round which has at least taken a bit of the pressure away from Bethan.

So... Positive markers, move house tomorrow and have my chemo pump removed on Tuesday. From there all I have to focus on is getting myself right for the weekend. It will be amazing if this can happen as it will give me a whole two weeks of relative normality until round three. That's the plan, just hope I can make it happen.

Weird Beard!

So... Ive been cut loose from hospital this morning with my chemo pump, now neatly stowed away in my new "bum bag"... so cool! I don't want to put a hex on things, but I'm feeling pretty okay. The usual underlying nausea is present, but I feel way more comfortable than when I got out of hospital at the this point last time round. Aside from a little catch up nap from being awake a lot last night I've been up and about with the kids. We all had tea together and got on with the usual family evening stuff. It was nice to feel this sense of normality again that it's so easy to take for granted.

I've spoken already about the acute physical changes that the treatment is bringing about. Well... in what feels like some kind of reverse puberty, my beard has started to fall out! It's like I'm getting younger. Large patches on the sides of my chin are returning to smooth areas that resemble my pre teen years... or more the bit where your beard is forming but didnt quite all join up, very strange indeed. Eyebrows still seem intact at this point, which is good, but I can't help feeling thier next!

It gets me down to a certain degree, and I keep having to remind myself that this is just a bridge I have to cross to get this done and that things could always be way worse. Yet as I sit here writing this several beard hairs have fallen onto then screen of my iPad, just as a reminder I guess that the second run is well underway.

It's been amazing to be back home, and with so much great stuff to look forward too in the coming weeks, I'm really hoping that this round is a lot easier to deal with than the first one. Good that this round marks the half way point of "the big four" of my chemo treatments before we get into the radiotherapy stuff. As one of my freinds stated at the very beginning of this "time only moves forward", it's a nice thought to hold onto when your in this position.

The kids are worn out and are very glad to have finished school for Christmas today, I think they both need a good break, and lots of mum and dad time. Something I'm really looking forward too as well.