Thursday, February 28, 2008

What to say?

Life goes on?
Time is a healer?
The longer you're in remission the easier it gets?

I dunno.
I'm approaching "appointments week" next week, and, up until today I was doing not bad. Buried myself in my work and had been focusing my emotions on other people. Today, however, has been pretty sucky.
Every twinge is cancer.
Every itch is cancer.
Every cough is cancer.
The confidence that I'm still clean seemed to vanish today and I can't explain it. Usually I'm pretty calm about seeing my onc and my nurse. I would see these meetings as a safety net... a reaffirmation that I was still OK, still clean, still normal... still alive.
Now I don't want anyone to examine me. I don't want more bloods taken. I don't want more scans. I don't want prodded and poked.

I don't want to be told I have cancer again.
I don't want to know.
I want to live in blissful ignorance.

Can I do that? I can't be forced to attend appointments, can I? They can't drag me into a CT/PET scanner. They can't force a needle into me.
I know the signs of this disease. I know the ins and outs of this fucking curse better than any GP. Can I not look out for myself now? I really don't need the reminder of what I've been through that appointments bring.
Just as I begin to push cancer to the back of mind I look at the calender and there it is.

Taunting me.
"You have an onc appointment."
"Your bone marrow appointment is in a couple of months."
"The radiation team want you in on this date."
Remember you had cancer? Oooooooh! Is it still there? Has it come back? Fancy more chemo? Side effect still bad? Secondary cancers?

I do think I know what is wrong with me this time and I'm man enough to admit it.

I'm afraid.
I'm scared shitless that it's all going to be taken away again.

I've been here, in this position, already. I've had my life back before and had it ripped out from under me. I've been back to work in the past thinking it was all over. The memories are still oh so fresh; of that day when I was told cancer had come back. It wakes me up at night and I'm sure it always will. I haven't been this strong, physically, in 2 years. I couldn't face giving it all back again.

But... if I have to... I will.
Because I want to live; just a little bit longer.

Also, I've discovered I'm an orange... which is kinda disturbing for a green Irishman like myself.
I nicked this "highly personal" quiz from Baldylocks and I am a bloody orange. If you haven't read the Adventures of Baldylocks then check out her blog asap. It's linked in my links menu. Check out her art work. I don't "do" art... I'm an art heathen/atheist... but the creative works she has produced stir something in me.
And her surname is the same as mine so you know she rocks :-)


You Are an Orange


You have a zest for life, especially for anything colorful, wild, or dramatic.
You have a unique take on the world, and you're not afraid to be a little funky.
You are a bit reserved toward people who don't know you well.
You have a thick skin, which can protect you from anything that goes wrong in your life.

Once someone does get to know you, they totally get and appreciate you.
Your friends see you as a bright person with a refreshing take on life.



Is it accurate? I'm not totally convinced!

Next up, my old puppy Kelly was sent to the great kennel in the sky. I miss that doggy so much. Below is the last photo of her with Becca.


Finally, just the usual note of thanks to the people who have helped me on my journey so far.
A special thanks to the people I have picked up on the way. It's different for you guys; my old family and friends had no choice really but to help and be supportive :-) ... you newbies came in when I was probably at my worst and accepted me as I was. Some of you had cancer and some of you didn't. Some of you were mere acquaintances pre-cancer but stood up to the plate when it would have been easier to walk away and we've became close friends.
I'm very grateful to you all.

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Currently on iPod :-
Get Cape, Wear Cape, Fly - Find the Time

I was a Cub Scout - Save your Wishes
Ice Cube - It was a Good Day
Vampire Weekend - A Punk
Prodigy - Charly

Man, this post took a few tunes!


Monday, February 18, 2008

Please think of my friends this week.

I've not got time to update this just yet with my adventures in the USA but just wanted to show solidarity, love and support for three very dear friends who will each be going through their own private trip to hell this week.

First up Darrel is having his 9 month post-transplant PET scan on Tuesday. He had a slightly dirty one last time around so we're all hoping for better results this time.
Next, Kelly is having a PET on Thursday. She won't admit it but she'll be anxious right now. Scanxiety sucks big time.

Finally, Bekah. Our Bekah.
She starts round two of ICE salvage this week.
I so wish I could do it for her but I can't.
Read her blog and read the comments left for her. It may help you understand why I, and everyone she meets, love her so much and unconditionally.

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Currently on iPod :- Adele - Chasing Pavements

Monday, February 11, 2008

Yeeeee Haw.

So this evening, after a three hour drive, I find myself holed up in a Best Western Hotel in Crossville, Tennessee. It a smallish town between Nashville and Knocksville on route 40. I don't know if there is owt to do here but I'm going to go and find out in a bit.

All I've done this weekend is shop and eat. Coming over here from the UK right now is a shoppers dream. The dollar is so weak that things are almost free for us! I have to buy another bag to check in as I'm going to get a far whack of stuff... it would be rude not to.
Food wise, I'm still a bit disgusted with portion control here but am learning. Now we have one starter between the three of us and then have our main meal with one side between us as well. It seems to work ok but there are still left overs.

Now off exploring.

(and I'm still a gay icon)

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Currently on iPod :- Kate Nash - Pumpkin Soup

Saturday, February 09, 2008

Musings from Alabama.

So it's 2130 on a Friday night in Huntsville. I'm a visitor in the USA and I'm in bed.
Knackered
And very very full.
I cannot get used to the portions of food of here. They are just HUGE. I feel so guilty when I leave three quarters of the food on the plate. Three of us went out for a meal tonight and what we ordered could have easily feed six people to capacity. What we left was unbelievable. I guess you get used to it but holy shit...!

So work is going good over here. It's not a wasted trip which I always worry about.
I arrived in Alabama at 1830 on Tuesday after travelling for just a little under 19hours... it's a three flight, long old slog to get from Scotland to Huntsville. Anyway, I arrived and it was a little windy and pretty humid. 9 hours later I'm rudely awakened by the hurricane warning sirens and wondering what the hell to do about it. I have a quick wander around the hotel in my shreddies but no one else seems to be giving a crap about it so I return to my room and sit on the balcony and watch the most amazing lighting storm I have ever seen. I'm told a twister touched down a little way down the road, in Madison, and that it was pretty lucky that we didn't get hit.
Welcome to America!

The only weird thing that is happening over here is that I seem to be becoming a fascination for gay men. It started on the flight from London to Atlanta where the steward was flirting outrageously with me. I thought he was just being eccentric and overly friendly until my work colleague pointed out that he wasn't like that with anyone else on the flight.
Okaaaaaay.
We get to Atlanta and I'm immediately latched onto by another fella whilst waiting for the connecting flight.
Onto a restaurant in Huntsville and everything is cool. Five of us go out for a meal and, whilst waiting for a taxi to take us back to the hotel, I order a final round of drinks for everyone. The drinks arrive and then the barman returns with a little pink cocktail thingy for me, on the house!
Last night, another meal and another extremely flirty, over attentive waiter.
I'm not sure about our meal tonight but my two colleagues thought I was being flirted with again. It must have been subtle this time as I didn't notice.... I hadn't been stroked.
I'm not in the least bit concerned about all this but just find it a little strange. I don't get this at home. I spent 5 minutes looking at the mirror tonight and I can't see any difference in my appearance.
Maybe it's the accent.
Maybe it's my new black hair.
Maybe I'm surrounded by ugly colleagues and people are just latching onto the good looking guy.... (JOKE).
Maybe the transplant is making me excrete highly charged pheromones.
Bottom line? I'm enjoying the attention!

Cancer sure does give you some odd side effects.

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Currently on iPod :- Smashing Pumpkins - Disarm

Friday, February 08, 2008

So you really want more of this crap?

Thank you so much for the kind comments and personal emails over the last week... even the couple of messages that accused me of coping out. I genuinely didn't know that so many people read this journal and, more importantly, get where I'm coming from.
The general consensus has been that new people diagnosed and terrified need to know that treatment can work and that some form of new normality will resume after a small timeout from life. I agree with that statement and, although I am not a one man support network, I feel I have a small sense of duty to communicate this mini philosophy to folk.
Hodgkins Lymphoma sucks. People die... I can't sugar coat that fact and I have shed many tears recently but most people go on to have a long long remission and cure. I don't know where I am on the scale of time left on this planet and it scares me daily. I don't think this fear will ever go away so I'll prove that this doesn't mean I can't live a normal life.
Finally, be aware that my heart will be fully visible here. It's pinned on my sleeve for all to see. If I'm pissed, you'll know. If I'm soppy emotional, you'll know about it. Mini breakdown? You'll know. I hope it won't make you uncomfortable.
I'll start a new post about my adventures in Alabama a bit later.

To Dina S. Your comment really moved me. I'm proud to know that I helped a small part in your journey with your Dad. I'm so sorry he didn't quite make it.

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Currently on ipod :- My Chemical Romance - I'm Not Okay (I promise)

Friday, February 01, 2008

The last post.

So this is going to be my last post. It seems recently that this blog has become nothing but an obituaries list for my friends. This is not what this diary was supposed to be about.
I started the blog so that distant friends and family could keep up with what I was doing and how my treatment was going. I wanted to journal exactly what it was like to go through a bone marrow transplant; both physically and mentally. I didn't want to sugar coat anything so that transplantees behind me knew what to expect.
Now I'm no longer in treatment I feel that this journal has served it's purpose and should be put to bed. A newly diagnosed cancer patient needs hope and if they stumble across this blog then the last few posts are hardly going to give them that! Besides, I'm not vain enough to think that I lead such an interesting life outside of cancer that people want to read about it!

If you are new to Hodgkins then I urge you to read my blog from the start and join the Hodgkins forum... the link is to the right. The forum is full of amazing people who will help you without question or judgement.

Finally, that you for all your support over this last 12 months. I wouldn't have made it without your love and support and I am forever in your debt.

As Alese would say - FIGHT 2 WIN!

All my love,

Wullie
Another warrior moves on

Sarah Hawthorne (pictured above with her partner, Lorraine) has sadly passed away. Sarah was the "den mother" of the online support group I use and was a source of love, hope and inspiration for everyone. She had, unfortunately, "been there and done that" with most treatments for Hodgkins but nothing would keep the disease at bay. The fact that she knew she was terminal did absolutely nothing to dampen her enthusiasm for life and all she wished for was a few more years. I don't know why this wish wasn't granted. You have no idea how much this beautiful person will be missed. We who knew her are so much richer as a result.

My post on the forum:

I first posted on here on the 18th March 2007. I had just relapsed and was so damn angry and confused.
A thread started in which Sarah, not knowing me from jack, explained where I was at, what I was facing and, most importantly, how to face it.
The fact that the thread collapsed into a slanging match with Anne then walking away forever is something that I still feel bad about.
http://forums.webmagic.com/ubbthreads/sh...part=1&vc=1

I am so pissed at myself right now for not letting her know exactly what I thought of her. I was going to do it when I visit Alabama next week and now it's too late.
That will not happen again. If I need to tell someone they're special then I'm just gonna tell them from now on.

To Sarah,
I'm going to miss you.
with lots of love,
Wullie