Sunday, January 20, 2008

I'm sitting here writing this and I am experiencing an abundance of emotions... and they are all of the negative variety. Look away now if you are not in the mood for that.

I'm filled with confusion about this disease that I have. Just why was I picked to get this? 95% of the human population carry the EB virus so why does it mutate in only a few of us? And why do most people get cured with just first line treatment? What is it that makes me so fucking special that I have to undergo a full-scale chemical and radioactive war with the addition of a transplant to get rid of it? All my life I've been Mr. Average. The one time I actually want and need to be average and I'm fucking "special."
I'm filled with a deep, consuming sadness. Hodgkins Warriors are falling. Why is this allowed to happen? How do families pick themselves up when people so young die? Why am I still here when others are not? I don't understand.
Mostly, I'm filled with fear. In the pit of my stomach I don't believe my fight with this disease is over yet. I can't explain it. It is a rumble in my guts that are just there and it scares me senseless. I think I want my chest alien cut out. We're not friends anymore and I need it to seek new living accommodation.
Finally, I'm pissed off and angry. I feel I'm being pushed into making choices and decisions that I don't need or am not ready to make yet. I'm pissed about having to be the happy, smiley cancer bloke at work because people will be uncomfortable otherwise. That never used to bother me but for some reason it does now. I don't know if it is the spate of bad news for people I have grown to love recently or if it is just that I am so damn tired now that the plastered on mask is starting to peel at the foundation. My eyes are constantly watery.
"Cheer up. It's not like you have cancer now!"... Very fucking funny. I've had 18months of treatment; if I want a bad day I'll have a bad day. I don't need people pulling out their little book of medical facts and wanting to know why I needed this extra treatment. "It's Hodgkins. Everyone gets cured of that."
Oh, and I don't have HIV or AIDS either. Thanks for that little gem, internet medical sites.

So now I find myself stuck at another of lifes forks in the road. I seem to have met an unusual amount of these in the past two years. Do I take the road to breakdown or breakthrough? Breakdown seems like the easy way out and breakthrough looks damn scary. For example, I think I may have to look for work elsewhere as the 90mile a day round trip to the office is not being beneficial to my tiredness or sanity. Moving on would mean I could be anonymous again; just a face in the office and not "cancer boy." That would be a breakthrough whereas staying still is the easy option but could lead to the breakdown.

Lord, I need an epiphany.

(and just a little bit more inner strength, if You would be so kind)

Saturday, January 19, 2008


A quick post to show my cheer leading, pom-pom waving support for everyone going through initial diagnosis, treatment, relapse, the post-treatment blues or coping with a bereavement.
Morgan passed away yesterday.
You can read her husband's blog entry here.
It's beautiful.

Thursday, January 17, 2008

I'm day +205 today. Only another 150 odd days to go before my odds of cure will statistically improve. From a few reports and trials I've read recently if you get through the first year post transplant unscathed then your odds of cure increase from 50/50 to 65/35. I believe they then increase by 5% per year after that. I was a bit shocked as I didn't know about the 50/50 thing to start with.
I had a routine appointment with my oncologist last Tuesday and all went well. Bloodwork was fine and dandy, no nodes popping out anywhere and my chest x-ray came back clean. My onc said "You still have a f*cking great big scar mass there but it's not doing anything" so I'm cool with all that.
I'm back to work now full time and fairly enjoying it. Days are tiring and it is a struggle to stay awake when I get home. I'm usually in my pit for 2100h. I've been asked to go to Alabama in February and I'm pretty excited about that as I may get the chance to meet up with a couple of friends who live not too far away from where I'll be.

Now the shitty but important stuff.
Too many people are relapsing or are in the system to see if they have relapsed. One person, Morgan, is currently going through her second transplant in a year. How hard is she!? If you think I had it tough then I urge you to read her blog.
Bekah is another heroine about to take the SCT journey. Now I have never met Bekah but she is the sweetest 23 year old I know. She is intelligent beyond her youth and has frankly been dealt some pretty pish hands in her life. She accepts everything in good grace and, if you read the comments left to my posts, you can see for yourself what an amazing support she has been to me throughout my transplant. I hope I can return the favour. I'm sure I felt my heart rip when I heard the confirmation of her relapse. Some light went out, anyway.
Here is darling Bekah and D. Keep them in your thoughts and prayers.

It feels like a knife to the guts whenever I hear news of a relapse. So this isn't "real" cancer then, huh?

Wednesday, January 02, 2008

A fellow Hodgkins cancer warrior passed away today. Shannon was 30 years old and leaves behind her husband, Jesse, and their 5 children.

Ar dheis De go raibh a hanam.
May her soul be at God's right hand side.

Jesse, sending you so much love and prayers right now. I don't know what else to say or do...

From Shannon's blog:-
“If we are ever to enjoy life, now is the time, not tomorrow, nor next year ……. Today should always be our most wonderful day.”

Tuesday, January 01, 2008


First up.... Athbhliain faoi Mhaise Duit!!
Or Happy New Year in English!! God, I hope I've got the Irish correct or my mam will kill me. Unfortunately Babelfish doesn't do Gaeilge yet.
Usually, at the start of the New Year, you look forward, make plans and reach for the stars. Nothing is impossible in this bright and shiny future. Right now, however, I'm looking back at 2007 and wondering what the fuck happened. Too many family members died. Too many of my cancer family members died and far too many of them relapsed for the second or third time. One or two are at this present time spending their last hours or days on this mortal coil and more still are going through scanxiety as they wait for results.
All in all 2007 both sucked and blowed.
But as the saying goes, every cloud has a silver lining. I have met some truly remarkable people these past 12months. Without the help and support of these people my transplant would have been infinitely more difficult and scary. The one thing in life you don't ever want to have to do is literally sign your life away. That is what you do before you go into a bone marrow transplant... you sign your life away so that the oncologists can give you lethal doses of chemotherapy. Because of the knowledge and support I received from my new friends I was able to sign that form and get on with it.

This is a post I made on the Hodgkins Forum and it sums everything up:-

Right then.
Before the bedlam of the holiday season kicks in in the next day or two I wanted to make sure I remembered my "other Family" on this board and to make sure that you all know just how much I have appreciated the support I have had throughout this year.
2007 was supposed to be a good year. I got a clean PET under my belt on December 27th 2006 and Veronica, myself and the weans were supposed to move on. Unfortunately life can sometimes suck but after more chemo, more chemo + transplant and then rads I'm clean again.

I can honestly say that this wouldn't have happened without this board.
A few weeks before I was rediagnosed I told my brother-in-law that there was not a chance in merry Hell that I was going through chemotherapy again should the need arise because I didn't think I could do it; and I meant it! Next thing I know, Veronica and I are sitting in the oncologists office and I'm pretty much begging for jungle juice and SCT as soon as possible! There were two reasons for that dramatic change of heart:-
The people on this board and particularly Mr. Darrel Hale.
For some reason (something divine?), just before re diagnosis, I really got reading the stories on this board and particularly Darrels blog. I think he was just starting his third round of ICE when my bomb was dropped and I was just in awe of the guy and the way he was still smiling through all the shit. I'd read other blogs but this one was "live and in progress" at the time.
Darrel, thanks for taking the time to blog! It gave me the knowledge that I could do it.

I don't like pointing people out for thanks as this is a community and we all stick together BUT:-

John, Ryan, Brian, Joe and Jesse:- for always making me laugh. Period. Everytime. Even when you don't mean too!

Skie, Susan, Alison, Fionn, Bekah, Chris + Vicky:- for pompom waving during transplant and keeping the fight in me.

Brian (moondoggie) again:- if I hadn't found his blog I wouldn't have found this board. CiMB.

Sarah:- for unfortunately having "been there and done that" and so could answer every one of my questions.

Duane:- basically my hero.

And finally, the two most important people to me... the Special Ks.
Karen and Kelly.
Thank you for keeping Veronica sane and for keeping in me a fight for life I didn't know I had. I look forward to buying the champagne in Boston!

Again, thank you ALL for the love and support this year.

Have a very Merry Christmas and here's to making and keeping Cancer our Bitch in 2008.

I hope to look to the future in a few weeks but for the time being I'm just going to reflect and be thankful that I am still here. And my New Year Wish? That everyone I know is as happy and as healthy as can be. As us Irish would put it....
"May the saddest day of your future be no worse than the happiest day of your past".

Darrel, Jesse or anyone for that matter. If you need anything you know how to get me.