Bit of a bummer...

2009-12-15T13:12:00.003Z

Fight2Win

The Alese Coco Fight2Win Organization has released a PSA in order to help raise funding to find a cure. This is who I am running in aid of next year.

You can view the commercial here.

"Hodgkins Disease will kill 3 people today".

I'll update my run progress and all that other good stuff shortly.

2009-11-02T20:20:00.002Z

Wullie vs The Edinburgh Marathon

On the 23rd May 2010 this overweight, unfit, chemo riddled 35 year old is going to run (and I use that word lightly) the Edinburgh Marathon.
Now why would I do something as dumb as this? I haven't done any form of physical exercise for over 10 years... and it shows!

Let me explain.
I have now witnessed one too many of my fellow Hodgkins Warriors pass away and I can't sit by. We need to raise money to fight this disease and we need to find a cure for EVERYONE.

I am going to run this marathon and raise funds for the Alese Coco Fight2Win Foundation.
Here is the email I dropped to Paul Coco, Alese's father, asking for permission to do so.

Hi there,
My name is Wullie Currie and, to cut along story short, you can see my Hodgkins journey at bitofabummer.blogspot.com.
On May 23rd 2010 I will be running the Edinburgh Marathon (Scotland) and was wondering if I could run it in aid of the Fight2Win foundation?

Alese was the first person I became aware of, after my initial diagnosis of Hodgkins in June 2006, who had the same illness as me. She was also the first person I "knew" that passed away from this terrible disease; just as I was going into transplant.
Unfortunately I have lost many more friends to this and when Adrienne left us in October I decided I needed to get off my fat butt and do whatever I can to raise awareness and hard currency. Alison asked that donations be made to Fight2Win. This is my donation.

In the UK there are not many organisations dedicated to Lymphoma... they are all bundled in with other cancers and, since it is the strength of Alese and Adrienne who have gotten me this far, I would be honoured if I could dedicate my run to Alese and raise funds for the Fight2Win foundation.

I warn you that I am not going to set any records here!! Right now I can barely run a mile but I know if I am running for such a great charity I will get there.

I look forward to hearing from you.

Kind Regards,

Wullie

Mr. Coco has kindly given permission so here we go.

That, in a nutshell, is why I am doing this.
I am doing it to remember those that have left us. I am doing it for those that are still fighting damn hard. I am doing it to raise some money to help find a cure so that hopefully no one else needs to go where I, and so many others, have been.
Finally, I am doing it for myself.
If I can do this I will finally prove to myself that I have beaten cancer. I may have beaten the Hodge in my body but in my head it lives on. It's time for it to leave.

There will be pain and no doubt I will want to quit many times over but I will always know that I have been through much, much worse and I hope this, as well as the motivation of running for Fight2Win, will keep me going until I cross that finishing line.
Should be an interesting journey.

Wish me luck and I'll be touting for sponsorship soon enough. I'll try and do weekly updates of my progress.

2009-07-17T13:09:00.004+01:00

Two Years Post Transplant

Just a small post to anyone still stumbling across this blog to say that I am still here and doing great... except I have just been diagnosed with the piggy flu and am now on TamiFlu.

Also, a friend of mine has a new single out on the 20th July. He goes under the name Kid Harpoon and is the fella of Veronica's cousin, Jenny. If you are in any way into music you need to check out his two EPs on iTunes. You owe it to yourself.

Get it!!

Follow Kid Harpoon on Twitter and MySpace.
Official site is here.
A very recent session with Steve Lamacq on Radio 1 can be found here.

2008-10-11T20:25:00.006+01:00

ONE YEAR POST TREATMENT

October 11th 2007. It was one year ago today that I finally finished my cancer treatment.

And how did I spend this momentous anniversary?

In bloody hospital. You couldn't make it up. :-)

Becca managed to get her finger stuck in a door and successfully ripped her middle finger nail clean off. The poor wee mite was in agony so a trip to A&E, a tummy full of paracetamol and 'brufen, an X-Ray and a large bandage later and all is well again... for now. The next few weeks are going to be fun trying to stop her whacking her hand against everything.

So why no updates?

Basically I've been trying to rebuild my life.

I'm still not sure exactly which is the harder... dealing with cancer or living after having it. Even now everything I seem to do always has a "hint of cancer" in it. It is impossible to forget what you have been through but at the same time you have to push it far back in your mind in order to move on.

Other people make it hard as well. They don't mean to; it is just human nature. People forget that I had a shit-load of treatment. If I'm tired... and believe me i get knackered as I'm still anemic etc... I get accused of using my spell of Hodgkins as an excuse. "It was a year ago. You're fine now. Deal with it.". It gets on my tits.

Anyway, I'll post another update soon as I have a lot to say and I think people in my office don't read this anymore so I think I can open up in peace but I just wanted to do a quick update and say:-

"I'M STILL ALIVE"

I'm one of the lucky ones.

And I know it.

2008-03-29T19:54:00.006Z

Day + 277

<--- That's me, that is.
I feel as if someone has slipped a concentrated tablet of DHAP into my tea or Irn Bru. My elephant friend from April 2007 has returned and setup camp on my head. My stomach is grumbling and every rumble has me clenching buttocks tightly. Oh, and we have the odd bit of vomiting thrown in for good measure. At least my 103F+ fever has gone away. Small consolation, eh?

I blame Kel. I was fine till I spoke to her on the phone when she was ill.

Bleuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuuurgh!

----------
Currently on iPod :- Nothing. Head too sore

2008-03-22T05:11:00.001Z

A little bit of sad news.

A very quick note to pass on the news that a fellow SCT buddy, Peggy, has passed away. The last I heard she was doing the well... the next thing; well. Peggy had the same stage and flavour of cancer as myself and her moving on has brought some thoughts to the front of mine.

I now realise and accept that I am, no matter what any doctor, oncologist or friend says, on borrowed time. I've dodged the reaper so far.
Life is short. I've thing I need to do. There's people I need to speak to, tell them how I feel. There's old friends I need to get back in touch with. I don't want to have any regrets.

2008-03-17T20:55:00.006Z

Just another tune.

This is by Sigur Rós and is called Glósóli.
If you've never heard any of their music then I would suggest you do.
If you need to relax with the lights off and a few candles on then this is the "band" for you. If you need music to cry to then this is the "band" for you. If you need music to give you a lift... well, you catch my drift!

If the music combined with the video fail to move you then you have no soul. It is stunningly beautiful.

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Currently on iPod :- Nothing! Raiding YouTube for my fav videos.

2008-03-13T22:29:00.003Z

Nothing to do with cancer.

I love you, Utah Saints.
Re-releasing this tune right now brings back so many great memories!
The video is absolutely superb and, if pushed, I can still dance like this. :-)

Utah Saints - Something Good 08

I can't stop grinning when I watch this!

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Currently on iPod :- Utah Saints - Something Good

2008-03-13T13:11:00.001Z

Short... but sweet.

Sorry for the delay in updating.
I'm still clean.

Kidneys seem to be hosed but we can live with that.

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Currently on iPod :- MGMT - Time to Pretend

2008-03-06T21:06:00.003Z

Below is the latest extract from Aleses' journal. Her parents keep it going in her memory. I've pasted it here in the hope that just a few more people "help out".
Jennifer has gone through hell for three long years and has now been told what the future is. She doesn't know how long she has. Please read her journal and give her all the support you can.
I hope I have as much courage and dignity when my time comes around.

Stupid fucking disease. I fucking hate it.
I'm tired of crying and being so helpless.

Thanks.

A Small Favor…

On several occasions Alese asked for help for one of her friends in the text of a journal update…Whether is was for prayer or requesting that people get genetically tested for a bone marrow match.

In this case, it’s for one of Alese’s dear friends Jennifer Willey… Jennifer is 28 and lives in Maine, she is a Hodgkin’s survivor; however, Jennifer underwent a bone marrow transplant and as a result she has chronic Graft vs. Host disease, this is when the body rejects the donor cells. This is a very bad scenario and there is no cure.

I’m requesting that you do three things…. First, pray for Jennifer and her family. Second, please go to her website at: www.freewebs.com/jenniferwilley/index.htm and inundate her quest book with encouraging words. Third, forward this request to a couple your friends and ask them to do the same.

Jennifer is a warm, courageous person and your encouragement will help. Just click on the Sign My Guestbook link.

Father, I ask you to put your hand on Jennifer... Bring her comfort, please take away her pain. Father, heal her body, strengthen her family and bring joy to her family and their home during these difficult days.

Blessings,

The Coco’s

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Currently on iPod :- Placebo - Slave to the Wage

Good lyric in this tune that I need to follow through with:-

All it takes is one decision
A lot of guts,
A little vision
to wave,
Your worries,
and cares goodbye.

2008-02-28T20:16:00.012Z

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.

What Type of Fruit Are You?

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.

----------
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!

2008-02-18T22:34:00.005Z

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

2008-02-11T00:40:00.000Z

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

2008-02-09T03:36:00.000Z

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.

----------
Currently on iPod :- Smashing Pumpkins - Disarm

2008-02-08T16:50:00.000Z

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)

2008-02-01T20:45:00.000Z

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

2008-02-01T20:21:00.000Z

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

2008-01-20T18:23:00.001Z

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."
NO, THEY DON'T!
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)

2008-01-19T16:41:00.001Z

RA RA RA!

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.

2008-01-19T13:29:00.000Z

Morgan passed away yesterday.
You can read her husband's blog entry here.
It's beautiful.

2008-01-17T13:24:00.000Z

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?

2008-01-02T21:30:00.001Z

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.”

2008-01-01T22:21:00.000Z

Reflections.

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.

2007-11-22T08:59:00.001Z

Now, maybe, the English led sports media will take a reality check.

2007-11-19T13:03:00.000Z

Day + 146

Hey! You know what really grinds my gears? Tiredness... and not just any old tiredness. Man, I am cabbaged. I just cannot seem to get out of the cycle of fatigue that I am stuck in. I'm on a one day on one day off routine right now and it is annoying. I go back to work next Monday (on a phased return; 3 days a week) so I'm hoping that might knock me into shape. I've been working from home these last few days so my brain still works... which is a bonus.

You know what else grinds my gears? People telling me I look great. I can't tell if people are talking about the amount of weight I've lost or the fact that I look better after transplant. I suspect for the majority of people it is because I am thinner. and the shallowness of that actually hurts. Not one person has ever said "You look great but how do you feel?". I feel shite, by the way!

The final thing that grinds my gears?
Depression.
I haven't been this low since my collapse at the end of SCT. Talking to my onc nurse a couple of weeks ago lifted me out of it but I'm afraid I've let myself sink back in. I see her again tomorrow so maybe she can give me a lift again.
I now suffer from many side-effects as a result of all my treatment:-

1) Severe fatigue... as moaned about above.
2) I can't feel my toes unless it is cold and then they hurt like hell. This is called neuropathy.
3) Lost about 60lbs coz of SCT and radio
4) Still can't eat properly and need morphine every now and again for throat pain
5) My hair has turned black and I need to shave my back! I'm turning into a silver-back mountain gorilla.
6) Paranoia about twinges in my neck
7) Veins are hard as rock.
8) Chemo-brain
9) No tolerance for trivial matters.
10) Depression... the worst of the lot.

On much happier news all my bone marrow tests came back as good or excellent. I have no sign of pre-leukaemic cells, the stem cells have engrafted nicely, my bone marrow is functioning as it should be at this stage and there is ZERO sign of The Hodge. It couldn't be better really.
Veronica and I have book our wee trip away to Boston, MA next year. We arrive on the 26th June for 7 days and are really looking forward to meeting the people who have helped us during our difficult times. We'll obviously miss the kiddies but will enjoy our first taste of freedom since Erin was born as best we can. Getting travel insurance is proving difficult but I just need to find that specialist cancer one!!
Talking of the weans, they got a mention in the Lymphoma Association quarterly newsletter. You can check it out here. They actually raised over £2100 pounds when you include the amount my company raised but for some reason they ignored everything my work did! The newsletter is actually a pretty good read so please have a look.

So, apologies for the fairly down post. This is probably why I haven't updated for so long. I'm now just keeping my head down and focusing on the trip to the States. It is giving me something to really look forward too.

2007-10-24T16:51:00.001+01:00

Day + 120

I forgot to let you all know how my Bone Marrow Aspiration and Trephine went. It happened last Friday and was my fifth one in total.
It was fine.
There was hardly any pain at all this time around. Dr. Katrina was perfect and I'd had a whack of morphine earlier in the day so I think that the combination of an excellent doctor and drugs did the trick. She had a brief naked eye visual examination of the cells recovered and was very happy with them saying that "they look very healthy and there are an awful lot of them". This hopefully means that the engraftment of stem cells was a complete success

I thought I'd explain exactly what this procedure is.
First you have a local anaesthetic injection into the skin over the biopsy site - usually your hip bone - to numb it. When this has worked, the doctor puts the needle in. For a bone marrow aspiration, the needle is quite thin. For a bone marrow trephine, the needle is thicker. Either way, the doctor needs to put the needle through the skin, into the hip bone and into the centre of the bone, where the marrow is. If you are having a marrow aspiration, the doctor then sucks a cubic millilitre of bone marrow cells into the needle. You feel a sudden, sharp pain when the doctor starts drawing the bone marrow cells out. If you are having a trephine biopsy as well, the doctor will take this needle out and put the second one in.
If you are having a trephine, the doctor will turn the needle back and forth (hard!) while pushing it further into the marrow. The aim is to get a one or two centimetre core of marrow out in one piece. Once it is in far enough, the doctor will draw out the needle, containing its core of marrow. The needle going into the hip bone can be painful, but it doesn't last for too long. The core is then placed in a solution and looks like the worm in the bottom of a bottle of good tequila.

So, I'm still not eating, although I can manage lightly boiled eggs mashed up in a cup. I am being weaned again!
I am going into the office tomorrow to have a full and frank discussion with HR and my boss about when I should return to work. I'm not up to it right now. I know my GP has written a report so it'll be interesting to see what that says.

Finally, we are setting the wheels in motion for our anti-cancer visit to Boston. We have settled on the 26th June to the 3rd July and have picked our hotel. It's just a matter of getting flights now but things are slightly inflated due to the 4th July celebrations. I'm sure we'll find something.

2007-10-18T20:43:00.001+01:00

Veronica and I (and the weans) went to see my Super Doc today. I haven't seen him in over 2 months so it was high time we touched based. Fortunately Wonder Nurse was also kicking about so I got alot of emotional and psychological garbage off my chest... which was nice. I'm arranging to have a few more one on one sessions as my mental health is not the greatest at the moment and I know it is worrying Veronica.
Anyway, all my blood work checked out OK again and I passed another quick "prod test". The rest of the consultation was just general chat and what to do now. I'm not having another scan until after Christmas (Woo hoo!) as my oncologist doesn't want to see "a large, shrivelled up dead tumor during the festive season". We're really pleased about this as it means we can just concentrate on the weans and not having me panicking about results like I was last year... it made Christmas suck. Also, I haven't heard him talk this confidently about my condition for a long time and it was nice to hear it.

Anyways, off to Glasgow tomorrow afternoon for my final bone marrow aspiration. Can't say I'm looking forward to it but it's the last one so let's just get it over with. This BMA is to see how likely or not I am to develop Leukaemia later on in life. I get the results in November.

2007-10-16T15:16:00.000+01:00

Radiotherapy is not the easy option!

Contrary to widely held beliefs, mine included, radiotherapy is not a stroll in the park for everyone! Today I gave into my throat pain and went to see my GP as I couldn't get through to a specialist in Glasgow. The advantage of seeing my GP is that his brother is my Stem Cell Transplant consultant so he can use the old boys network to get me the info I require.
After a thorough examination where everything was poked and prodded (no hard nodes... yey!) my GP decided that specialist advice was indeed needed and so sent me on my merry way whilst he worked his magic.
I'd just got home when he called to say that he had gotten through to my radiotherapist (someone I have yet to see) and that the intense pain is to be expected due to the area of therapy. I should have been given morphine at my last appointment in Glasgow... whoopsie! My GP has now given me the morphine (take 4 times a day) and told me that the pain should peak on Friday / Saturday and that it should be plain sailing after that.

Hopefully I'll be able to eat something early next week.

2007-10-11T18:50:00.000+01:00

Treatment complete.

On May 29th 2006 I had a 5cm lymph node removed from my neck for biopsy. This was my first taste of treatment for cancer.
Today, October 11th 2007, has seen me take my last treatment on a journey that has lasted 17 long, hard months.

Thank-you to everyone who has helped myself, Veronica and the girls make it this far. You know who you are and we couldn't have done it without you. God Bless you all.

2007-10-08T20:02:00.000+01:00

Day + 104

I promised myself I wasn't going to update the blog until I had something positive or happy to say. Unfortunately I still don't have anything really positive to write about but I've been nagged to do a quickie update so here goes.
I have three more radiotherapy treatments to go and frankly they can't finish soon enough. The daily grind of a 4 hour round trip into Glasgow everyday has taken its toll and I am 100% puddle-ducked. I'm still not eating and the throat is worse than ever so I'm surviving on prescribed Calshakes. I take two a day and they give me nutrients and 1200 calories.... I've been told I need circa 3000 calories right now. The fact that I am managing to drink these shakes has meant that I don't need a feeding tube inserted in my nose and I have been managing a meal (usually something spicy) every other day. I'll be glad when this is over.

Day + 100 came and went. I didn't think I would make it but I did and I'm very much still alive. I managed to go from leaving hospital to day +100 without getting ill and then on day +101 I caught the nasty lurgy and cough that my little girls have been fighting all week. Bloody typical!

Big congratulations to Skie who was released from SCT today. At only day +12 she has shown remarkable strength and put me to shame! As too has my man Brian in California! Brian has to undergo what they call a "tandem SCT". This basically means that he has to have 2 SCTs in quick succession. Instead of getting BEAM chemo in a one'er like I did he gets the M for the first transplant and then the BEA part for the second. He has just been released from his first one and at day +16 appears to be doing just great.
Also, Duane continues to make a remarkable recovery from his allo-SCT and is a constant source of inspiration to me.

2007-09-27T12:23:00.000+01:00

Day + 93 Things not much better.

Not much has changed since my last post. I'm still not eating and this has now been exacerbated by the fact that the radiotherapy has made swallowing an "issue"... that is, I can't swallow without being in extreme pain. The doc has prescribed a white liquid to take before meals that totally numbs the throat but I'm still not that keen on the actual physical act of eating. I can't get past the smell of cooked food without wanting to throw up.
It has become such a concern to me that I went to see a dietician yesterday and have being prescribed high calorie milkshakes... the same ones I had on the SCT. These too are disgusting to drink but it is easier on the throat than food so I am going to persevere with them. She told me I would be in trouble if I lose more weight between now and next week so I have an incentive to drink them!

I think the throat problem is due to having the radiotherapy so soon after SCT. Because I had grade IV mucositis my throat lining was wrecked. It probably hasn't recovered fully and now the radio is destroying the new cell lines faster than my body can replace and repair them.
Anyways, I'm off now. Number 10 of 20 treatments today so half way there.

2007-09-16T09:21:00.000+01:00

Day + 82. Things getting a little weird.

It's been a tough few days all round. I started radiotherapy on Thursday but unfortunately decided the night before that I should develop diarrhoea. It has not been pretty. Travelling an hour on the train into Glasgow for treatment whilst trying not to soil yourself is not a pleasant experience. I lost one pair of undies due to the fact that ScotRail decided the particular on-train toilet I had to use shouldn't have any toilet paper stocked.
Arseholes.
Thankfully this little stomach upset has now just about passed but I have one more slightly worrying problem.

I don't want to eat.
Nothing appeals to me. Everything tastes like utter crap and the smell of food cooking makes me want to vomit... it is that bad. At the moment I am surviving on fruit and Weetabix. I went for a curry with work on Thursday night and hardly ate a thing and this is not like me to turn away mountains of free Indian food.
I feel terrible and will have to give my Oncologist a call on Monday. The radiotherapy will be burning calories like nobodies business and I'm not replacing them. No wonder I'm knackered and the weight is dropping off again.

I guess I'd better buy in some calorie shakes until I get over this.

2007-09-10T15:58:00.000+01:00

Now the dog has it...

Just returned from the vets with a poorly Kelly in tow. She has been diagnosed with spleen and liver cancer and has between 1 week and 2 months to go. The vet said that he had never seen a spleen so large in a dog and some of her blood readings were off the scale! She is still bright in herself and very playful so there was no way I was putting her to sleep today but the first sign of any distress or discomfort then I'll be taking her back to "get the deed done", as it were. I'm gutted, to say the least. She's coming up to 12 years old so she's done not bad... she was only supposed to live till 7 or 8 as she gets so many steroids to keep her skin condition under control.

On my cancer front I've had good days and I've had bad days. My hair is coming back fast and I'm not losing any more weight, although I still don't have a good appetite as my taste buds are still narfed. I go in for tattooing tomorrow and radio begins on Thursday.

Day +76 today. In 24 days time I'm an official auto SCT statistical survivor.

2007-09-04T18:53:00.000+01:00

Day + 70

Just a quick "few line" update.
Things are moving slooooooooowly and I think this is why I am dipping in and out of minor depressions. Nothing serious or worrying... just some black days when I want the treatment to start so that it can finish.

I was in Glasgow today on the CT simulator so that measurements could be taken for my radiotherapy. I now have three large crosses on my body... one under each armpit and one in the middle of my chest. I had to promise under pain of death that they would still be there next week. They are my alignment crosses and will make sure that I am in the exact same position for every radio therapy treatment... they get permanently tattooed next week and my treatment begins on the 13th. My last treatment is on the 11th October and I get the double joy of radio and a bone marrow aspiration that day.
I can hardly wait but at least I now have a definitive final treatment date.

The end is in sight.

Then we need a holiday... even if it is just to Ireland.

2007-08-25T09:42:00.000+01:00

Wullie 2 - Cancer 0

Just a quick update.
Veronica and I went to see my oncologist on Thursday to get the results of my scan.
I'm in remission.
Basically my tumour is the same size as when I went into SCT and this means that I was definitely in remission going to transplant and nothing has changed since then. The mass is just solid scar tissue... and a lot of it.

I'm in the clear.

Now just 4 weeks of radiotherapy and we can hopefully put this nightmare behind us. I still haven't got an official start date for the radio so will be chasing that up on Monday. It should be starting in 10 days but Glasgow hospitals work on some weird time and date system that doesn't reflect the real world.

2007-08-21T09:29:00.000+01:00

Scanxiety:-
1) Concern or solicitude during the time period between receiving a scan and waiting for the results which disturbs the mind and keeps it in a state of painful uneasiness.
2) A general feeling of shit-ness

This is where I'm at just now. In a state of "scanxiety"... a word that needs to be added to the Oxford English Dictionary. It is truly a shit state of mind to be in and, no matter what you do, you can't help but think the worst. Thursday can not come quick enough.

Also, whilst I'm on a bit of rant can I say that just because I'm no longer getting any chemo and haven't started radiotherapy yet does not mean I am back to "normal". Yes, I do look "healthy" but I am still battling serious fatigue and the side effects of the SCT... one of the hardest procedures a cancer patient can go through. Why do people expect me to be instantly better and able to run a marathon. Give me a fecking break here... it's only 56 days since the transplant and I don't get classed as surviving it until day + 100!!
Let's have a quick run down of the drugs that I have taken during 16 months of CONSTANT treatment.

ABVD
ABVD is named after the initials of the chemotherapy drugs used, which are
doxorubicin (pronounced docks-o-rou-bi-sin), which was originally called Adriamycin®),
bleomycin (blee-o-my-sin),
vinblastine (vin-blas-teen) and
dacarbazine (de-car-ba-zeen).

DHAP
DHAP is named after the drugs that are used in the treatment. This includes
High Dose Dexamethasone (pronounced decks-a-meth-a-sone), which is a steroid, and the chemotherapy drugs
cytarabine (sigh-tare-a-been), which is sometimes called Ara C, and
cisplatin (sis-pla-tin), which contains platinum.

BEAM
BEAM is the nuclear weapon of Hodgkins treatment. the drugs involved are
BCNU which is also called carmustine and mainly used to treat brain cancer. I have had my life dose of this drug in one go.
cytarabine (sigh-tare-a-been), which is sometimes called Ara C
VP-16 which is also called Etoposide (pronounced e-top-o-side)
Melphalan (pronounced mel-fa-lan)
(Bone marrow now dead so transplant to revive it)

This does not include the daily drugs I have to take in order to keep infection at bay and to prevent pneumonia and shingles.

I challenge anyone to take all those drugs in the same time period as me and feel "normal" as soon as you finish.
Go on. Let's see you do it.

2007-08-14T21:31:00.001+01:00

We went to see Thomas the Tank Engine and Percy at the Bo'ness Steam Railway on Sunday. Good family day out and here are a couple of photos.
Erin and Rebecca really enjoyed their ride on Percy.

Toot Toot!

(Click the photos to enlarge)

2007-08-14T21:02:00.001+01:00

Radio it is, then.

No messing about with the radiotherapist this time. In what turned out to be a very interesting meeting it has been decided that I will start radiotherapy in about two weeks. Yet again, as soon as I get my strength back, I'm going to go back to being knackered. I'd also better get my butt in gear and buy a new motor. I flogged mine a couple of days back and now I'll be needing one retty sharpish!
The consultant today spent the first 10 minutes of the meeting going through my previous refusal of treatment and basically tried to justify why I didn't get it. His heart wasn't in it though and it was blatantly obvious that if I had been referred to him then I would have gotten it. As he put it himself "Combined treatment for early Hodgkins is by far the best form of treatment.".
Yeah, thanks!
So the upshot of the meeting is that I'll have four weeks of rads to my chest alien and surrounding nodes. We're doing the extra nodes as seemingly Hodgkins works by "dripping" into adjoining nodes so if there is anything that has already dripped down from the mother lode it may currently be undetectable by modern technology so we'll just zap them in case. He was going to give me three but decided that seeing as my disease has been playing silly buggers they'll give me option 2 which is a higher dose over a slightly longer period.
I'm happy with all of this. I just want the specialists to chuck everything at me to make sure this doesn't come back. Stuff secondary complications. We'll deal with them in the future.

This also means that I now have to deal with three separate departments and keep each one informed of what the other one is doing. The NHS don't do interdepartmental communications! I'll also be "followed up" for up to 5 years by each department separately as well so even when I'm confirmed cancer free I'll be having hospital appointments coming out of my proverbial!

Chris, except a call soon. I'll be needing to grill you about your first hand experience!!

2007-08-13T20:38:00.000+01:00

Day + 48

Any hope I had of falling of the cancer radar came crashing down today when not one or two, but FOUR hospital appointments arrived through the post this morning. The postie must think I'm at Death's Door! I've got a visit to see a radiotherapist tomorrow, a CT scan a week today and two visits to the bone marrow unit in Glasgow in October... one to do another marrow test (ouch) and the other for the result. Oh, and my routine onc appointment on the 24th August. It's busy having cancer.

I'm a bit apprehensive of the meeting tomorrow. If you've followed this blog from early on you'll know my feelings towards radiologists. I just know I'm going to go into the meeting on the full defensive and not let the poor girl away with anything. Worst still, if this is the pre-assessment crap that I've already gone through then I'll have wasted my time and will not be shy in making them aware of the fact. My Onc must have written a hell of a referral letter to get me in so quickly.

I just hope the treatment starts asap and they don't wait until Day + 100. I want it now whilst the bugger (if still around) is in retreat.

2007-08-10T15:23:00.001+01:00

Day + 45

Wow! Day + 45 already and a good 5 days since I've written anything into this blog. The main reason for this? I've nowt to say! I've done jack and I'm getting very very bored. I was that bored yesterday that I ventured into the back garden and cut the grass. This might not sound like much but when you consider that my garden is on at least a 45 degree angle it probably wasn't something I should have done... but I wasn't going to be beaten. A job that normally takes me an hour took just over three but it's done now and I'm never doing it again. I'm going get a wee man in to do it for me.

Still no firm date through for my CT scan so I'm going to have to give my haematology nurse a bell on Monday to see if she can chase it up for me. I've not had another night sweat but I still want to know where I stand.

Kelly, I'll speak to you next time Veronica calls. I passed out last night. Doing the garden completely knacked me out. I'm achy all over. Veronica really enjoyed your "little" chat last night and I'm still fighting my way through cinnamon heaven!

2007-08-05T12:50:00.001+01:00

Being in Limbo sucks!

Romanino Discesa-Limbo Pisogne

Being in Limbo truly sucks. I don't know how other folk cope with it but I seem to be having a pretty hard time of it right now. It all started two nights ago. I had a night sweat. I've never had one before but it is a common 'B' symptom of The Hodge so my first thought for someone of my pessimistic nature is that the auto SCT has failed and that the disease is back and progressing. I've been fighting a head cold for the last five days and the night sweat was probably the last throws of that infection (and it was a warm night in Scottish standards AND I'm temperature sensitive after the SCT) but all the confidence I had has evaporated into the ether.

I get a CT scan in a couple of weeks but that is really just to get a base line for the future. In all honesty it'll be another four or five months before I know what is going on; that's when I'll get another scan. I don't know how I'm going to last that long. The CT scan I'm about to get won't really tell me much unless the mass in my chest has grown... that'll tell me a lot!!
The ironic thing is that I'm not looking for there to be any change in mass size. My onc says if the mass is the same size then it is 100% scar tissue. If it has shrunk back a small amount it is probably scar tissue that has just naturally shrunk back. If it has shrunk back loads it means I wasn't in remission going into SCT after all and that the BEAM chemo has killed of more (hopefully all) disease. We then need to wait for the future comparative scan. Follow all that??

Please God, don't let it have grown.

2007-08-03T18:38:00.001+01:00

Candy, anyone?

Meet Kelly.
Kelly is over at Chemopalooza, is a fellow Hodger and my joint biggest Cheerleader in the States along with Susan (LauLausMamma) and Peggy in sunny Huntsville.
Kelly is a star.
Today Veronica and I received a parcel from her. It contained candy... an awful lot of candy.

Nine pounds of candy! I think shipping the box cost more than the actual sweeties inside.

Here is a break down. There is a cinnamon theme as that is my dominate taste sensation.

Mentos
Sour Patch soft and chewy candy
Peanut Butter M&Ms ---> gorgeous. The girls love them but Veronica has claimed them
Big Red chewing gum
Twinkies
Hot Tamales
Cinnamon Tic-Tacs
Altoids Cinnamon ---> very strong
Altoids Cinnamon wrapped in dark chocolate
Pop Rocks
Stretch Island Fruit Co. Original Fruit Leather
Ferrara Pan Red Hots
Dentyne Fire - Spicy Cinnamon
Market Pantry Cinnamon Disks
The Simpsons Fruit Snacks for the weans... and they love them!

and a lovely card.

Kelly, thank you very much!!!
That weight I lost during SCT is already coming back on. It's going to take us weeks to munch through that lot!

And those Altoids really do blow your head off.

2007-08-03T09:08:00.000+01:00

Oncologist meeting yesterday.

Yesterday I had my first real follow up meeting with my oncologist and haematology nurse since I finished DHAP! It was a so-so affair with some things unresolved.
Some good points to come out of it were:-

They were both delighted with my progress. "One of the best at this stage post transplant"
Bloodwork was OK so no need for transfusions. Haemoglobin was down slightly so I just need to watch how tired I am.
I'm getting an early CT scan (in the next fortnight) as my Oncologist is desperate to know what is going on in there. I'm really pleased about this... it'll hopefully give me some answers and get me out of this state of limbo.
I'm NOT getting a PET scan. My Onc has lost all faith in them and is going "old skool" with me. They will monitor me for clinical progression for disease... ie things getting bigger... rather than lights on a PET scan.
I can return to work but was advised to wait for the results of the CT scan so I will. I will know the results on 23rd August.
I'm now free to roam where I please. Go to Gala Days around here and go to the picture house to watch The Simpsons Movie. Woo Hoo!! as Homer would say.
My shaking and numb feet are neuropathy
I've dropped some drugs so less to take!

The bad point was that I still don't know what is happening with radiotherapy. My Onc is desperate for me to have it. He doesn't want it to come back and feel that we haven't given it everything we've got. He's writing a referral letter to the radiologists and wording it in such a way so that they'll be culpable if it returns and they've refused me radio again. We'll wait and see.

Finally, I'm famous in the world of Scottish Haematologists and Oncologists. Seemingly my case is discussed in the seedy bars and clubs (and official meetings) where these people meet. It's brought up whenever two haematologists cross! It would appear that no-one can quite believe that I had to go to SCT. I was text book Nodular Sclerosing Hodgkins Disease and should have been cured first time around. My response to ABVD was excellent. The blame has been put squarely at the feet of the radiologists who refused me treatment.

Hopefully some good will come out of my ordeal and it will never happen again. I sincerely hope that the "It's only Hodgkin's" attitude that these radiologist have (the one I spoke to certainly had that attitude) has now gone and they realise that Hodgkin's kills. It might not be as aggressive as lung cancer but IT KILLS!

Day +38

2007-07-31T19:46:00.001+01:00

Perspective on things.

We've been away for a few days visiting the mother-in-law in Montrose. That's where the above photo was taken and I love it. It totally puts things into perspective for me. How small and insignificant I actually am and how beautiful this world actually is. I've had a pretty ropey day for me... one of my black ones stuck in unknown limbo... but the above photo just gees me up and makes me more determined to live. I believe the evil little fecker is no longer inside me and will not be coming back.

The girls had a great time at their Nanny's. They love the beach and Montrose has some gorgeous sandy beaches. Possibly one of Scotlands best kept secrets. Unfortunately it was a tad on the chilly side (note Erin's attire in the photo) and Montrose is, what can only be politely termed, "a dump". Nothing else going for it except the beaches.

Nothing else to report. Bit tired but doing fine. In hospital tomorrow for bloodwork. It strikes me as weird that I'm told to avoid certain things and places yet the Oncs are more than happy for me to go into possibly the worst place for infections in order to get blood taken. MRSA anyone? Some things are just incomprehensible.

Oh, and it's Day +35 today. 65 days till the magic number. Over a third of the way there.

2007-07-28T18:30:00.000+01:00

Day + 32

Just a brief "How I'm doing" update.
I'm feeling better by the day. Already I'm noticing day by day differences in energy levels and strength. I wasn't expecting this at all. Everyone I spoke to told me that it was week to week for a few months at least but today I just feel great. I guess the doctors always added the general "But everyone is different to how they respond to treatment" disclaimer when they were telling me what to expect after SCT but I really am pleased with how things are going... except for the fact I think the weight I lost during transplant is starting to come back on a bit. You see, even my dodgy tastebuds are starting to spring into life and unfortunately it is "sweet" that is currently the dominant sensation although savoury is closely up its behind!

I'm now totally itching to get back to work... even just a day or two a week for the first month. I'm obviously just wanting to get a sense of normality back in my life. I know it is too soon to go back and I really do need more time to recover but I'm going to broach the subject when I see my Oncologist on Thursday. If my blood work is OK and he agrees to the part time return in a couple more weeks I'll then have to confront the "Bob Factor" and accept things if they don't want me back until I can go full-time. I'd like to get some work in in case I need to get sent for rads as that would require yet more time off and, to be blunt, I'm starting to feel like I'm taking the piss with my company. Possibly the greatest company to work for.

Seeing as the footie season is nearly upon us I've update my tunes to play a few Celtic songs. I've also added some tribute songs to Joe McDonnell, who died 26 years ago on the 8th July, and the other 9 brave men who died before and after him.

To all Hodgers -Beidh ár lá linn!

2007-07-27T14:31:00.001+01:00

Some SCT memories.

I'm Day +31 today and already the auto SCT is feeling like a bad dream that happened to someone else. I keep saying to Veronica that "It really wasn't that bad" and she then reminds me of something I had forgotten and I realise it was a tough old time. For purely personal reasons I'm just going to ramble and try and remember as much of the procedure as possible (especially during the times I went offline) so that I don't forget about it in the future. This is a "purely for me" post. I wouldn't bother reading it.

The first week, high dose chemo week, was pretty uneventful. Chemo usually started at 0930 and I still had my attention span so I could read, watch a movie or the TV and play Nintendo for long periods of time. The biggest problem was staving of boredom and working out the time as my room had no window and therefore no natural light. I remember the BCNU gave me a blinding hangover-type sensation for about 4 hours and the Melephalan hurt my mouth when it was being administered so I had to suck on ice poles.

The second week started with me getting my stem cells back over a two day period. It was 4 bags of the stuff and, again, was pretty uneventful. The only side effect was that I stank of sweetcorn for at least three days. I could smell it coming off me and I hate sweetcorn so it was pretty unpleasant. This was the week that the mucositis set in; I think it was Day +3. I battled with it for a couple of days but then gave in and went on a morphine drip. My tongue was swollen as well but fortunately for me the mucositis stayed out of my throat and digestive tract so it wasn't as bad as it can be. I was diagnosed as a Grade 4 though as my mouth really was bad.
Day +4 was when my white cell count and neutrophils bottomed out to zero. My marrow was "dead"! Now we waited for counts to come back.

During week three I started eating less (nothing except Calorie MilkShakes) yet developed diarrhoea. I started losing weight rapidly and by the time of discharge had lost just under 20lbs in 11 days. I still don't know why they didn't attempt to stick a feeding tube in me. I guess it was because I had some "spare" fat to lose. It was never seen as a concern although I felt it was a bit much to quickly. I hope it doesn't come back as quick!! On Day + 10 my white counts went to 0.2. I had started recovery. The next day they were 0.6 and the day after 2.2
The SCT had worked, my marrow was doing a Lazarus and I was still alive.

The last 5 days were torture. The morphine was still in and Veronica says I was completely out of it. I had been fighting a line infection for the best part of 14 days and was feverish. When I peaked at 39.8C (103.6F) it was decided to deport me and get the line out. There was nothing too this and I think it took about 40 minutes. I was totally out of it with fever and morphine and can't even ask Veronica how it was as she was banned from my room as it was getting done. I do, however, remember the doctor attempting to fit Venflons into my two arms. She made a right arse of it causing one arm to swell to a circumference of 39cm and the other arm to just hurt like hell.

It was this night I suffered the finally indignity and soiled myself... three times in the one night. In my defence you want to try and run for the toilet when you're high on low level heroin with drips in both arms. First of all you have to decided to get up and then find the plugs for the pumps. Unplug them and then negotiate the stands around the bed and into the bathroom. By the time the "Uh oh!" feeling was in my stomach it was too late. I don't think I was popular with the night shift nurses that night. They had to make my bed up three times!
The next day, still out of it, I was subjected to the humiliation (for me anyway, I'm totally over reacting but it just feels like that now after the event) of a bed bath by a 50+ year old woman. No gorgeous blondes for me! Seemingly she was very nice but I can't really remember it. I think the fact I agreed to it showed Veronica I was totally gone!

Finally the last couple of days were weird. I was weaned of the morphine over a 24 hour period and then I went through what can only be described as two days of a complete black depression that I had never experienced before. The fever had finally gone and I just wanted out of there. Maybe it was the lack of sleep I had over the previous 3 nights but I fell into the black hole big time... I just broke down. I think it was the first time I had actually cried for myself. Usually, if I cry about this whole Hodge thing, it is because I'm thinking about Veronica and the girls and what they'll do if I'm not here. This was a selfish "Why me?" outpouring. Fiona, one of my nurses, thankfully dragged me out of it. Let me spill my guts outs and then gave me some Valium to get me to sleep. It was 0600 in the morning and obviously Veronica wasn't around... thankfully. There are somethings that just shouldn't be seen. I was in a mess.
Then I suddenly got the news I was after... weekend release with a Monday return for full discharge if I coped. My mood brightened and here I am now.

Day +31 and getting stronger.
It's a funny old life.

2007-07-26T08:21:00.000+01:00

Alternative Therapy??

Veronica and I went to our favourite Thai last night and ate a gorgeous meal. It was superb even though I couldn't fully taste it! That, however, wasn't the interesting part. In the restaurant window was a "blown up" newspaper article headed "Thai Curry can kill cancer cells!". As the article was from the British tabloid The Sun we didn't think much off it but I've Googled it this morning and there is seemingly some good factual science behind it. Here for example. If you Google "Thai curry can kill cancer cells" you get loads of returns.
I think I have found my perfect alternative therapy in the extremely slim chance that the auto SCT hasn't worked!

And yes, I got deaded yesterday. I bought a present. I finally got Veronica her long overdue Eternity Ring. She wasn't expecting that. It's white gold with diamonds fully around the circumference of the ring. I think it looks pretty damn cool. Not overbearing but you know there is a lot of sparkle there! I think Veronica likes it... we just need to get it slightly resized.

2007-07-24T18:17:00.000+01:00

Day + 28 :- hereby known as Independence Day.

Today was a great day. I woke up totally shattered and passed on an outing to Stirling with Veronica and the girls as I was so tired. 30 minutes later I gained some energy from God knows where so decided to sneak out in the car for the first time in months. Yup, I ventured out of my safety bubble without Veronica.

It felt great.

I popped into Dunblane in order to sort some missing sick lines out but unfortunately the SS like training of GP receptionists in the UK meant that she refused my request unless I booked a GP appointment. I explained GPs where very busy people and they are well aware I have had cancer, just had salvage chemo and an SCT transplant and that the missing sick lines where just an oversight on my part as I've been "a bit busy with things like staying alive" but she said too many people were "at it". I took my skip hat off and showed my nearly bald napper and said "Does this look like I'm at it?" but she was obviously high up in the Gestapo and refused to budge. I should have whipped my top off and showed all the scars but I didn't want to scare any passing children or OAPs. So if HR are reading this I'll get the missing line to you next week

I came home but was still full of energy so took the car out for a drive again (she doesn't know what's hit her as she's just sat on the drive for a year); this time into Stirling. Had a wander around the shops and then came home.
Needless to say I am now 100% pooped but I feel damn good. It shows yet more improvement. I can also taste a hint of "sweet" and "spicy" now so I'm really looking forward to my Thai tomorrow night.

I wonder if I bought Veronica a 5th Wedding Anniversary card and pressie? We said we weren't buying presents this year due to everything that has gone on so in typical female fashion if I haven't bought anything I'm dead and if I have... I'm dead as well. I'm in male limbo.
Tune in tomorrow for that exciting episode!

2007-07-23T13:52:00.000+01:00

Day + 27

Day +27 already and I think I'm doing OK. I'm getting out and about with the family when I can and trying my hardest to not overdo it or get frustrated when I get tired. That is still the biggest hurdle for me as I get frustrated easily. I'm an awful lot more active than I thought I would be at this stage and, sorry for repeating myself, when I think back to this time last week when I was discharged and could hardly walk I can barely believe it. I think Veronica is pleasantly surprised as well as I have been known to stay in bed. I even spent a couple of hours wheeling Becca around Stirling Shopping Centre on Saturday morning... I was knackered afterwards but NEXT sales must be attended!!!

I still need some rest in the afternoon and I am really, really feeling the cold. Veronica refuses to put the heating on as it is July... "The heating DOES NOT go on in July, August or September and that is that". This means I need to get under the duvet to heat up so I always have a nap in the afternoon. This will soon stop as it is effecting my sleeping at night.

Nothing else to report at all which is all good news. Temperature is holding steady and I've escaped infection (touch wood) so far so all in all we're delighted with the way things are progressing. I just wish they'd progress quicker!

It's our wedding anniversary on the 25th July so we've decided to go out to our favourite Thai restaurant for a meal. It's a quiet little restaurant so I should be OK to go to it. Bit of a weird one for me as my tastebuds have no where near returned to any semblance of normality yet but they are improving. I'll just make sure I have the spiciest thing a Thai does; whatever that maybe and finish off with one of the delicious coconut pancake thingies. I might have to imagine the taste but I'm going to have one.

Good luck with the scan results today, Kelly!

2007-07-20T18:34:00.001+01:00

It's Friday....

and I had a visit to the hospital today for routine blood tests and a chat with my haematologist. Apart from taking 20 minutes to find a vein to drain blood from... they are completely shot and the nurse was threatening to go through my ankle (I miss my line!)... everything was great. My blood counts are superb and my haematologist looked and sounded really impressed with the progress I have made. I now don't have to see ANYBODY for two weeks! I can't believe it! Two weeks without being prodded and poked and drained of blood. It's been a while since I have had this kind of freedom. Perhaps we can get away again for a few days?
What a difference a week does make. I can't believe what I can now achieve when I think back to how I was last week. The change is remarkable. I don't expect every week to progress as well but we can only hope!

After the hospital visit I went into the office to hand a sick-line in. Erin came in with me and, after promising to smile and say Hello to everyone, promptly went into sulky, shy mode. Thankfully Auntie Debbie in HR brought her out of herself with the traditional bribe of crisps and sweets. Winner every time. I think Erin will be wanting to come into the office with me every time I go in now!
I visited almost everyone I wanted to see; albeit very briefly as I didn't want to hang around a "dirty" environment for too long... plus I was knackered. Bob hinted about a potential project I could work on from home but thinking back I think I was being fobbed off again!!! I think he just wants me to get better asap and forget work until I return... then batter me with stuff!!!!
I went back to HR to see Debbie again only to find she had fetched Veronica and Rebecca in from the car and a full on picnic was on the go in the middle of her office. I hope we didn't trash it too much! I really wanted to see Peter of the Charities Committee to thank him personally for all the money he has helped raised for The Lymphoma Association but that end of the building is just too dirty due to people coming and going from farms. I thought I'd better play it safe and stay away. I'll make sure I get him next time.

Rest of the day has been pretty uneventful. Just watching The Open on the TV and resting up as it has been the busiest day I have had since leaving hospital. I'm knackered but I made it through with the usual unequivocal love and support from my beautiful wife.
Veronica, however, is absolutely shattered. She took the girls into town to do the weekly shop. It's hard enough when I'm there and I get the impression Becca was in one of her moods so it can't have been easy. I wish there was more I can do to take the pressure off her.
All I can do is make sure I don't do anything stupid to set my recovery time back and make it up to her when I recover a bit more. This could be a problem as I have a habit of doing stupid but I'll do my best.

Oh, Chris and Vicky and Kelly, if you read this we're gonna have to nail down some potential dates for Boston. I've talked Veronica into leaving the children with my folks.
I want my DUCK tour.

2007-07-18T08:47:00.001+01:00

Knackered

I bought one of those elliptical cross-training machines on Monday from good old eBay and the bugger arrived yesterday... all 111lbs of it. There was no way I was shifting that box upstairs!
Box was removed and all parts were moved (slowly) upstairs and then Veronica flexed her muscles and moved the base as I just could not manage it.
Assembly time for normal human :- 40 minutes.
Assembly time for post transplant dude :- 2hours 47 minutes.

Wow!

After every little bit was assembled I need a short break. You don't realise just how much this transplant malarchy has taken out of you until you start doing the mundane tasks.
Needless to say I haven't been on it yet... I was too shattered after building it to use the damn thing but I'll get my workout sometime today and no doubt get frustrated that I'm on the lowest setting. Although as long as my heart rate gets pumping that is all I need just now.

Nothing else to report so far. My parents returned home yesterday. They have been superb and been here every week during my transplant.
Becca woke up yesterday and decided to plaster herself from the top of her head to the bottom of her feet in cream that she managed to reach from her cot. We're sorry now that we didn't get a photo but we just wanted to clean her up at the time. She was pure white!
Erin is just my little angel, as always and Veronica is still performing heroics and keeping us all together.

We don't seem to be missing the dogs either; which is a bit worrying. We've put them into kennels for a month under doctors orders and I thought I'd do my head in without them but I haven't actually noticed them not around. Maybe it is because they are old and just lie around these days anyway!

As ever, thanks for all the support. It really helps!
Love you all.

2007-07-16T19:18:00.001+01:00

I'm free to do what I want any old time....

Barring infections of course... and ability and strength!
So Veronica and I took the hour drive to Glasgow to be told don't come back. All in all we were there for 25 minutes.
Woo Hoo!
100% discharge; care transferred back to my local authority and all appointments now local. No more harsh travel regimes for Veronica. Magic.

Veronica actually suggested the lead song in my playlist for just now as well. I was stunned. I actually said to her "You know a song by The Soup Dragons?". I didn't know she knew about old bands like The Soup Dragons. She was listening to Level 42 and Brian Ferry back then. I think even The Stone Roses managed to pass her by back in the day.

She's far more educated now, though. No choice really!

Oh, got my season tickets renewed for Celtic FC today as well. I can't go again until middle of October but if anyone wants a lend of them till then or just fancies the odd match then no probs. Drop me a line.

All in all a good day.

2007-07-15T17:00:00.001+01:00

Best. Birthday. Ever!

After an up and down night (found it really hard to settle) I finally nodded off about 0400 and was awoken around 0800 to the sound of the girls.
Superb. Never thought I'd enjoy a wake up call so much in my life.

Veronica got up, got them ready and then brought up some birthday cards and gifts that people had kindly sent. Then I came to the "special" one. Veronica has a friend who is extremely friendly with one of the Celtic Lisbon Lions. As a result she was over in the US for the big shindig with all the players. Veronica asked her if she could bring me back a momento.
Nicola excelled herself.
She exchanged a shirt for a funky new Melbourne CSC No.1 shirt and then got all the remaining Lisbon Lions to sign it for me. She even got wee Jinkys wife to sign it in his honour as he sadly passed away last year.
I was blown away that someone would go to all that trouble for me. I was, as I have been many a time on this cancer journey, extremely moved at the generosity of people and the time they give up for.
Veronica was chuffed to bits as well. It's the first present in over 10 years that I won't be bringing back to the shop for a refund!!
It'll be getting framed (shame really as it is a lovely shirt) and hung pride of place in the sitting room. A keepsake for life.
Also thanks to Brian (Moondooggie) from Cancerismybitch.com for my b/day card and personal letter. It meant a lot, dude. I'm wearing my shirt with pride.

Everyone have a drink for me today / tonight. I honestly didn't think I'd see 33.
I'll have a root beer!

2007-07-14T16:50:00.000+01:00

We made it!

Well at Day +18 (who had that in the sweep?) I got my sorry arse out of the hospital and made it home.

Heaven.

Broke down (as expected) when I saw the girls but apart from that everything has been great so far. I'm not 100% discharged yet; that happens on Monday. I'm on a weekend pass to make sure I can cope.

Somehow I'll think I'll manage.

I'm totally exhausted and my tastebuds are shot worse than ever before. The only thing I can really make out is orange or apple but even that has to be really strong!

Man, you have no idea how good it feels to sit back in your own comfy armchair and lie in your own bed. I do a fair bit of travel with work so thought it would be easy.

It wasn't.

I'll post more on the joys of being home a bit later. Bit tired just now.

2007-07-13T10:40:00.000+01:00

It's up to me now.

Well I'm reclaiming my blog back. Today is the first time in ages that I have switched the laptop on. I got some good news today.... if I can keep my arse out of bed and do a fair amount of walking then I may get a weekend pass.
Fantastic.
I soon as they said it I was out of my bed and scaling what felt like K2.... a flight of 32 stairs. I did it yesterday and had a wee walk the day before and it does knacker me. I'm going to need some exercise tips from fellow SCT'ers to get strength back. I'm wacked after doing something so seemingly meaningless. I shouted when I go to the top of the stairs. People just stared at the madman... probably thought I was a local Glasgae jaickie high on heroin or bevvy.

Now I'm just resting for the next hour and repeating the process. I'm going to buy a good exercise bike for the house as well.

Regarding the treatment. It wasn't that bad. My big problem was an uncontrollable fever that lasted 20 days and only broke 48 hours ago. Without that I wouldn't be so week and probable would be out by now.

Damn Hickman Line!
Not thinking about going to work yet... more small goals like walking to the local shop and back when I get out. Hopefully I can work from home for a while. The brain still very much works 100%

2007-07-09T23:45:00.000+01:00

The Only Way is Up..............Baby! (sing it with me, now!)

Day +13

OK - 2nd time of trying .................

Yup, we've definitely hit rock bottom today (I hope!) and are looking forward to some improvements from here onwards.

The powers that be decided that Wullie's ongoing high temperatures are due to recurring line infections in his Hickmann/Apheresis line so they whipped it out today. Not a pleasant procedure, but straight forward enough (at least for me, I wasn't allowed in and sat and played my DS in the corridor!!). The up-side to no line is that hopefully his temperature will come down and behave itself and he will start to feel better. The down-side is that he now has a venflon in each hand attached to drips on either side of his bed pumping in all kinds of fluidy things to his body. This makes standing up and moving nigh on impossibilities...........which is fine as the bug that has moved in has left him completely zapped of energy. Wullie has found today one of the hardest...........his counts are doing brilliantly, rising quickly yet his body is not healing itself which results in much frustration - he just wants to feel well again and come home!

Tomorrow is another day..................hopefully the next post will have definitive home-coming news..................fingers, toes, eyes, legs, anything that moves crossed please................xx

2007-07-06T11:01:00.000+01:00

Day +10

WOOOOO HOOOOOOO!!!!!!

Just received a phone call from the Happiest Man in Scotland - HE HAS CELLS!! He is over the moon and knows now that the transplant has WORKED!! He really is going at it Textbook style!! From here on it will be progress, progress, progress - can't believe it, we're going to have him home soon.................................

So yesterday, from 0.0, he has White Blood Cells - 0.2 and Neutrophils 0.1.

Onwards and Upwards - his pecker is definitely up ; - )

2007-07-05T23:42:00.000+01:00

Days +7 - +9

Another Wifely Progress Report

Hello again - no he's still not switched on the computer which means he's still in pain, usually he and the laptop are inseparable! This is just a quick update as I'm completely cream crackered having just returned from visiting his Highness..........

Things are progressing slowly......we don't care how slowly, so long as they are progressing! Things have been very low for everyone the past couple of days. The morphine is still running and Wullie spends most of his time in and out of 'sleep', and his mood took quite a dip, but tonight he seemed back to his usually positive self. Still no obvious side-effects from being drugged up but he is claiming he has no recollection of several 'grumpy' moments fired at his parents!! Hmmmm.....he is compus mentus enough to question nurses about their protocols though - I suspect some selective morphine-induced behaviours beginning to emerge..........!!!

Well, I mentioned progress so here is what has happened over the last couple of days - it's been a bumpy road.............!

Temperature from line infection stabilised with antibiotics
Mouth swelling subsided on one side of face
Managed to eat 1/3 of a Weetabix (only liquid food until then!)
Has not been sick at all today
Morphine infusion has been lowered by 0.1 ml/hr and was actually stopped for an hour.........soon to be reinstated, ouch!
Hair loss has begun (but I don't think he knows that yet - however, this will please him as a few days ago he did ask why he was the only one he had seen who still had hair - did this mean the chemo hadn't worked??!)
Felt able to talk on the phone for the 1st time in nearly a week (put a smile on my face!)
Managed to read a few pages of a book today

HOWEVER............

new rise in temperature as of yesterday
more magnesium, potassium, red blood cells and platelets been needed.
more ulceration further down the throat
White cells and neutrophils still 0.0 (nothing to worry about, may take many more days yet)

So, there you go - sorry it's so boring, my brain has already gone to sleep leaving my fingers typing, but know you good people out there want to know how the good people here are doing!

Thanks again for all the continued support, not just for Wullie but for me, too - you all have no idea how much it means...................Vx

2007-07-03T00:01:00.000+01:00

Monday 2nd July

Days +4 - +6

'Giving Birth is a Doddle Compared to This'

Hi all - I have been given permission to post on Wullie's blog as he is in no state to do so himself. The pain he mentioned on his last post on Friday escalated pretty quickly - he held out as long as he could but on Sunday he went onto morphine. He's not on huge amounts, so no hallucinations or moments with which to tease him when he's better (more's the pity!!), just enough to make the pain tolerable. The pain of oral mucositis (which is what he's got) goes down, alongside the pain of childbirth, as one of the world's best kept secrets. Just as new mum's go, 'yeah, it was bad but I got through it' so do SCTers keep the yuckiness of this to themselves! We were well warned by the doctors, but until it is experienced personally, I don't think we ever believe it will be that bad!

Anyway, yes, he's in pain, but he's also doing fantastically. He's making the job of visiting him so easy as he isn't moaning or complaining (OK, so he might do if he could!) and puts up with my asking him really inane questions like 'How are you?' - well d'uh............! And judging by the grumpiness this evening - he's starting to feel a bit better...................(sorry - couldn't resist!)

On Saturday his neutrophils and White Blood Cells finally hit the big 0 - nadda, nothing left! Now we're just waiting for these numbers to start rising. He has so far had some red blood cells to boost his haemoglobin, magnesium and platelets to keep those aspects of his health on track. He's also got yet another line infection so is on antibiotics for the next few days.

It's been a rough few days, and there may be more rough days to come, but he'll get there. I can't tell you all how proud I am of him, which is just as well 'cos if I got all gushy he'd kill me. Let's just say I think he's amazing........................x

Hope this post goes some way to filling in the gap - he'll be back when he can (I know you're missing him Kelly, believe me when I say, he'd post if he could!).

Thanks to you all for your continued support...............hopefully the next post will be from the man himself.............................Vx

2007-06-29T06:38:00.000+01:00

Day +3

So, hello there, pain. I was wondering when you'd get here!
Last night the mouth finally exploded. My tongue is swollen and feels as if it is being constantly grated and the rest of my mouth just feels like I'm chewing on glass. Not pleasant... but it is surprisingly bearable. I can still swallow so that means I can still eat and therefore keep my strength up; allegedly. Let me fill you in on yesterdays culinary hospital delights. Bear in mind you'd think a hospital would promote healthy eating!

Two weetabix, full fat milk and OJ for brekkie
Mutton Pie, baked beans and creamy mash for lunch
Chicken Tikka Masala with Fried Rice for Dinner.

Total lack of fruit and veggies here!

Here's my nurse with some pain meds. I'm gong to check out for an hour.

2007-06-27T12:10:00.000+01:00

Day +1 Count up to release begins.

Just having a wee lie down at the moment in an attempt to keep my strength up so I thought I'd write some random nonsense down here whilst I await my last bags of cells.
I was checked out by the consultant again this morning and everything is spot-on. The phrase "perfect progress at this stage" was used so I'm well chuffed about that. I thought I'd be crawling under the bed covers moaning in agony by now. I've also been told that they'll kick me out when my neutrophils hit the 0.5 mark. I thought it was at least 1.0 so this is another boost for me.

On the down side my mouth is definitely starting to feel the effects of the chemo so this could be the start of the pain. Hopefully it won't be too bad but it would be rude to say no to opiates if they get offered. To be honest, and I have no idea where this positive new me has come from recently, but I don't think it is going to be that bad.

I've also been wondering to myself why I'm keeping this blog... I told you this was a random post! At first I believed I was doing it to keep friends and family aware of my ongoing situation and to stop having to repeat myself. Maybe even to help people behind me who find themselves in this situation in the future. It probably was; but it has evolved into a bit more than that now. I think I'm now doing it for more personal and perhaps selfish reasons.
I need to see daily that I am giving everything that I can in this fight against The Hodge and I need people on the outside to see it as well. I don't want anyone at any point thinking that I am giving into it and if the worst ever did happen I want my girls to be able to read through it and know that their Daddy did everything he possibly could to win.
I also like being centre of attention as well!!

Nowt but Wimbledon on the TV as well. At least this time last year I was skiving off watching the World Cup... but tennis? I draw the line at that. Such a boring game to watch.

Twinkies on eBay. Whatever next! Thanks again for them!

Oh, and I still stink of sweetcorn!

2007-06-26T17:10:00.000+01:00

Day 0 - Transplant Day. Happy Birthday to me

They are in and swimming towards my marrow. On yerselfs, chaps!
Well, half of them are on the way. I've had three bags today and I'm getting the other three bags tomorrow. The delay is due to the amount of preservatives used due to me being "a bit bigger".

For something that I had built up to be huge and monumental it was all a bit anti-climactic! The nurse and doctor arrived, defrosted a bag of cells, hooked me up and drained it into me. Each bag took about 12 minutes and the whole process was over in 40 minutes! Now, the only side effects are I'm am completely knackered and I stink of sweet corn... and I bloody hate sweet corn!

Thanks for all the cards that arrived today and an HUGE thanks to Chris and Vicky for the Twinkies. I'm going to fire into them after my dinner. Mmmmmmmm!! Did Kelly play a part in them?

2007-06-25T17:19:00.001+01:00

Day -1

FUCK YOU, CHEMO!

I apologise. I am much more intelligent than the above title suggests but that is just my 100% total attitude today.
Fuck you, chemo!
Now, don't get me wrong. I am eternally gratefully for all you have done for me, Mr. Chemotherapy, but I am never, ever going to see you again. Auf weidersehen, pet.

So today has been a good today. I received my last chemo ever at 1230 and munched through 8 ice poles to numb the tingles you seemingly get in your mouth. Lovely jubbly. No after effects but due to the amount of fluids being pumped through me I'm running to the loo every 30 minutes. I currently have the bladder of a hamster!
Oh, my haemoglobin is a wee bit low so I'm getting a bag of blood later tonight as a wee booster.

Hoping everyone is well.
Tomorrow, when the stem cells are returned, I'm officially reborn.

2007-06-24T21:03:00.000+01:00

Day -2

Absolutely nothing to report today. Just how I like it. An easy day (for me anyway, Veronica took 2hours to get to me today due to traffic) just kicking back watching DVDs and listening to tunes. Pretty peaceful, all in all.

I'm pretty excited about tomorrow, mind.

LAST
CHEMO
EVER

2007-06-23T23:29:00.000+01:00

Day -3

So far, so good. I'm tolerating the chemo a lot better than I thought and, apart from a tiny amount of nausea in the mornings, I'm fine. It was tougher getting the DHAP pumped into me than this stuff. All my bloodwork is checking out just great and I'm on schedule... whatever that is! I know the tough times are yet to come so I'm making the most of these good ones and getting plenty of exercise in. I've lost 5.5lbs in weight but that is due to the chemo making your body burn calories. I had it all explained to me but it went way over my head. I've been assured that this early weight loss will be fat and not muscle but they'll keep an eye on it. It's not as if my 200lbs bulk is wasting away!!

I got a move out of my room but the room they put me in was much smaller although it did have a window. I wasn't at all comfortable in there so I punted myself back into my old room. Better the devil you know.

2007-06-22T21:19:00.000+01:00

Day -4

A bit of a shitty day to be perfectly blunt. Nothing to do with chemo... that's me half way through that now... I've just been really really down. I blame some of it on my steroid downer which would have started this morning but most of it is just plain old home sickness. Missing the girls, my bed, the familiar smells and even the dogs. The slightest thing would start my eyes welling up; especially looking at pictures of the girls.
Then just when I think I've composed myself I read Kellys last comment in my previous post and I'm in floods for 10 minutes! Ridiculous!
How can people like Kelly, Chris, Vicky, Susan, Susie, Sim and everyone else that I HAVE NEVER MET show such support and compassion for me and Veronica?

You all make me feel very small and humbled.

2007-06-21T16:32:00.000+01:00

Day -5 continued.

So the day gets more interesting.
Veronica wakes up to discover a mini flood upstairs. One plumber in later and it appears the sealant around the bath is dodgy and water has steadily been building up over time. It decided last night would be a good time to break out. Ruined carpets and a new ceiling in the kitchen downstairs were the only damage.
Next, my dad pops into my attic to make sure there are no faulty pipes to discover a wasps nest. The exterminators will be out tomorrow.

Finally, I found a little friend in the bathroom of my des res room.

A cockroach.

I'm waiting to see if I now have to vacate this room and move to the "emergency room". A room so small I can stand in the middle and touch all the walls.

2007-06-21T11:08:00.000+01:00

Day -5

Sorry for the lack of post yesterday... Day -6.... but the BCNU chemo juice gave me an instant and blinding hangover. The glare of a laptop screen would have been to much for my little, bloodshot eyes to take. I effectively had to shoo my parents out of the room at 2100h last night as I just wanted all the lights off and to bury my head under a pillow. We've all been there!
Fortunately a couple of paracetamol and a sleep got rid of it.

So far it has been pretty uneventful. I'm slapped awake at 0600h to get bloods taken and BP, temp and pulse measured. Then I'm free to do as I please so I go back to sleep till 0800 and then drag my sorry butt out of bed and to the shower.
Chemo started at 0930 this morning and I am currently on bag 2 of today's 4. Apart from a flushed face there is nothing to report. It's just a matter of staving off the boredom.

Hope all is well in the outside world and thanks for all the kind comments that have been left.

2007-06-19T20:38:00.000+01:00

Anon commenter please stand up.

Ok, ok. Who is the anon poster in my previous post that recited the "Footsteps" parable? It is my all time favourite and I must recite it in my head a couple of time daily these days. Someone is on the same wavelength as me.

Thank-you for giving me that extra boost to get through this first night of many.

2007-06-19T17:49:00.001+01:00

Room without a view.

Here is a picture of my digs for the next few weeks. Lovely, ain't it? No window and it is tiny! Seemingly I'll get moved once one of the other patients checks out and gets home... lucky buggers.

Been a busy old day today. Bloods taken, chest x-ray, head examined by the shrink, ECG and a damn bone marrow aspiration. Owwwwie! I wasn't told about that one.
I now also have my full schedule and I'm not getting a rest day after the chemo after all. My stem cells will be given back to me one week today.... June 26th... so already I'm one day ahead of schedule and one day closer to hugging Erin and Rebecca. Woo Hoo!

As you can also probably tell by this blog entry I have managed to obtain web access. I've nipped onto the hospital wireless connection. Seeing as there was no security on the line I thought it would be rude not to and it will save me a bit of money in 3G/GPRS charges. Now to setup MSN or some other chat facility so that I can constantly pester Veronica. I'll maybe have to get her to get me a cheapo web cam. I was going to just use Skype on the PDA but this line is fairly quick so a cam on the lappy would be much better... and cheaper.
Veronica, give the girls a huuuuuuuuuuuuuge hug from their Daddy tonight please! And don't forget the tickles for Erin.

Tomorrow the battle commences. There will only be one winner.

Me.

2007-06-18T20:29:00.001+01:00

Once more unto the breach...

That's probably the one and only time you'll ever get me quoting Shakespeare... and especially Henry V.
That's me ready and counting down the hours till admission tomorrow. I'm all packed up and all my gadgets and gizmos are either charged up or getting charged up. Skype is installed on the PDA so I hope I can get a 3G signal down in the bowels of Glasgow Royal Infirmary. The sooner I get started the sooner I get out. I'm 100% fine about the treatment and what lies ahead but I do get upset when I think about Erin and Rebecca. I'm gonna miss them sooooo much. Veronica has said she'll beg the nurses to let them in once or twice but I think that would be harder for me than just not seeing them. I'm already counting the days until I'm out... I'll maybe get Veronica to make one of her sticker charts for me.

Keep in touch, everyone. I have the technology!

2007-06-16T21:32:00.000+01:00

So what is this stem cell transplant lark?

Just because someone asked here is the run down of what will happen to me starting next week.

I will be admitted to Ward 40 at Glasgow Royal Infirmary on Tuesday 19th June. I will be shown to my little room and no doubt numerous pints of blood will be taken for infection checks etc. I'll then have a quiet night before the fun starts on Wednesday. I will then start high dose BEAM chemotherapy which will be given in potentially lethal doses if I didn't have the transplant at the end of it.

Day -7
See what I've done there? Those wacky oncologists do a countdown now to transplant so Wednesday will be day -7 to transplant.
Today I will get the "B". It is called BCNU and is given to me through a drip into my line over about 2 hours

Day -6 to Day -3
On these days I will have two drugs. Ara-C and VP-16. I believe these are given as two 1 hour drips

Day -2
On this glorious day my body will receive its last ever dose of chemotherapy and that is fact. No matter what the outcome of this whole transplant procedure I will not be having chemo again.
The drug is called Melphalan and takes between 15mins and 30mins to administer.

Day -1
Bugger all. It's called the "Rest Day"... sounds ominous.

Day 0 - hopefully June 27th 2007.
My new birthday. Today I am reborn with my life-saving stem cells that were harvested a couple of months back. They will be given back to me via a transfusion and should only take a couple of hours.

Now I wait for my bone marrow to go into terminal decline and for my stem cells to administer the Last Rites and make sure the marrow does the greatest comeback since Lazarus. I get blood tests twice daily to monitor what is going on and seemingly the worst pain is with something called Mucositis and this usually kicks in for the period of Day +3 to Day +11.
I believe it hurts like hell and 75% of SCT patients get it. I'm due a break so hopefully I'll be in the 25% that don't really experience it.

Ha..right!

From Day 0 it is really just a pain management and waiting game. My blood is monitored constantly and as soon as the white blood cells and neutrophils return to a sufficient level to give me some form of low-level immunity I'll be discharged. There is no method of working this time out so I could be in hospital for anywhere between 3 to 6 weeks.

Tiocfaidh ár lá

2007-06-15T19:52:00.000+01:00

I've got nothing!

I've got absolutely nada to say today. Zip, zero, nothing. All I've done today is pop into work to find the IP routing changes that I had requested from our backbone provider hadn't been carried out so my weekend work has now been scuppered. I did, however, get my hands on my PDA and it does everything I could wish for including video calls. I just need to check if there is a Skype for Windows Mobile. That means, that you, dear reader, are going to have to put up with my morphine induced rants from my hospital bed. I, for one, am really looking forward to seeing what insane nonsense I write in my drug induced state when I exit from the place!

Congratulations to Kelly for finishing her own personal ABVD hell today. I know there will be the mother of all parties when she can get back on the sauce! I will make sure a bottle of Scotland's finest makes it way over to her... and I don't mean Irn Bru.
Also well done to Chris who is coping amazing well with being turned into RadioActive Man. I pray it goes this smoothly for the remaining treatments and I'm sure it will.

Finally Brian. I'm praying for you buddy and I ask everyone to read his blog if you haven't already. It has got me through many rough times and has been truly inspirational to me.
I'm positive all will be cool with your PET.

Oh... and I'm pretty scared right now. As the "big day" gets ever nearer I wonder what horrors lie ahead. Just what circle of Dante's Hell will I go to?

2007-06-13T20:02:00.000+01:00

Warning. Sick post ahead.

Well not sick but diarrhea.
I woke up this morning and smelt a terrible smell. To be honest I first thought that Veronica had been at the apricots again but she hadn't. Next thought was that one of the girls had had an incident during the night. Nope, not that either. Veronica thought she knew what it was so she ominously walked down stairs and headed for the kitchen... this is where our doggies sleep during the night. They used to sleep in our room but they've been banned since chemo started and my white blood counts were a bit dodgy. Anyway, she opened the door and was greeted with an almost literal sea of poo.
It was everywhere. No wonder we could smell it upstairs and at the opposite side of the house.
To now cut a long story short it took a good 4 hours to gut the place. Veronica got the worst of it up and then conveniently had to take Erin and Rebecca to their toddlers play morning leaving me on my hands and knees scrubbing the flooring and bleaching every surface. The dogs are never going to that kennel again.

On the plus side it is one less room that needs gutting for post transplant.

Now I'm just getting together stuff I need to get through the boredom of my hospital stay.
Got my DVD player and Nintendo DS Lite for entertainment. I'll be raiding the local book shop tomorrow and Veronica will bring me in my magazines and Private Eye when they drop through the letter-box. My work are getting me an SPV PDA unit so that I can keep in touch with email and surf the web (we don't seem to do internet connections in the NHS; we'd rather spend the millions on administrators and paper-pushing managers). Hopefully I'll be able to keep this blog updated in a basic fashion so please keep the encouraging comments coming. I especially want to hear how my fellow Hodgers are doing with their treatments... or lack of it in a few weeks time! Please keep me up to date with your news.
I think that'll keep me going but if any post-SCT'ers have and further suggestions then let me know.

6 days and counting. The end is in sight.

Bring it on!

2007-06-12T17:59:00.000+01:00

It's the Final Countdown....

So now the countdown to transplant officially begins. One week to go and these days are going to drag so I'm going to have to keep myself occupied. I'm also looking for some new authors to read so if anyone has any suggestions then let me know... I'm a fantasy / sci-fi kinda guy with Robert Rankin, Terry Pratchett, Christopher Moore and Tom Holt being favs. I like Jasper Fforde as well but will read practically anything except Chick Lit. Three of these dudes have new books out during my stay in hozzie but I can fly through a book so will need a pile.

The last two days have been great... just me and the girls and we've had a right good time. If only the dogs weren't around. I picked them up from kennels yesterday and they looked a bit peaky. Today I have had to clear up THREE lots of diarrhea from the behinds of my lovely puppies and each time there was nearly a pile of my sick next to it because of the smell! Thank God we have wooden floors for easy clean up. If you couple this with the fact that Erin has caught a wee bug and threw up on me yesterday I can't help but get paranoid that the world is conspiring against me to catch a pre-transplant infection! Thankfully I'm holding up with no problems.

Our couple of days away in Colvend Bay in Dumfries and Galloway were extremely relaxing and refreshing and just what we all needed. The girls had an absolute blast and Veronica and I just enjoyed them enjoying themselves. The days were full of activities and the weather (for Scotland) was superb. I had to keep running for shade it was that warm. The beach was lovely and sandy and the adventure parks knackered the weans out enough to make sure they sleep solid in the evening whilst Veronica and I just kicked back. Erin particularly enjoyed the Ice-Cream farm. She ate enough of the stuff that we still can't believe she wasn't sick. (There seems to be a theme of vomit running through this post so I might as well add that Erin chucked up all over herself on the way down to the cottage. Getting the smell out of her car seat was no easy task and we were only two minutes away from out destination. Why don't children give you a bit of warning? All we got was "I don't feel well" and the "Bleuuuuuurgh". Marvelous). I'll get some photies chucked on when I can be bothered.
We're thinking of getting a place down there because we loved it so much. We'll check things out after transplant.

For the record Veronica is still a bit gassy.

2007-06-04T18:44:00.000+01:00

Boooooring

No posts recently because I've got nothing to say! We're pretty much just counting down the days until transplant although we have booked into a log cabin later this week to get away from it all. A couple of days spoiling the girls is just what I need and Veronica just wants to get out of the house and not think about cancer for a while. I can't wait to see how she copes without being able to read other folks blogs or login to The Hodge Forum. I'll probably be made to go into work to get a GPRS enabled iPaq to keep her going.
Once back it'll be the start of gutting the house and making it nice and clean in preparation for my return from SCT. I think we'll get some professionals in as neither Veronica or I are particularly tidy... we're surface cleaners and the gaff needs a good, deep cleanse.

As a side note; don't EVER let your spouse eat a whole bag of dried apricots. If you do then be prepared to sleep in the spare room or the car as the smell that is generated during and after digestion is truly horrific. They're of the "silent and deadly" variety of farts as well so they just creep up on you. Veronica thought it hilarious to let one drop and then wait for me to jump out of bed in disgust... and that's with two windows open. It set back my taste bud recovery by a good few days.

2007-05-31T18:27:00.000+01:00

Realisation

Just a normal day today. I went into work again to put in some network infrastructure change requests to our IP-VPN supplier (boring IP stuff) and then the office threw a barbie for our outgoing MD. So it was burgers and beers (although not for me) all round and a perfect way to spend an afternoon at work! Peter, I don't know if you read this blog thingy, but if you do then thanks for everything.

Nipped to the shops on the way home and, when I finally got back to the house, the actual realisation that I had beaten this evil Hodge fecker again kicked in for the first time. 16stone of burly, pudgy bloke then proceeded to have a mini-breakdown for 5 minutes. The relief just flowed out of every pore. I guess it was just the fact I was doing "normal" things.
I am going to see Erin and Rebecca grow up.
I am going to get old.
I will see Celtic win a major European honor... (maybe that one is asking abit much)
I do have a future.
I'll have to cancel that funeral I had mentally planned a few weeks back.
Veronica, unfortunately for her, is stuck with me. No easy way out for her now.

19 days to transplant and frankly it can't come quick enough.
The light at the end of the tunnel is get brighter and it's not the light I thought I was going to be seeing!

2007-05-31T07:57:00.000+01:00

Quickie

I've just twigged that my 11 year old doggie is called Kelly.
So, Kelly, meet Kelly.

2007-05-30T18:06:00.001+01:00

Hi Ho, Hi Ho...

It was off to work we went this morning. This was the first time I'd been into the office to do some actual "work" for about three months. There are one or two things I really want to get cleared up before I go in for the SCT. I've been putting off doing them until I was strong enough and also because I haven't been 100% sure the transplant was taking place until I spoke to my oncologist on Monday. It was good to a be a part of the furniture again... even if it was only for a half day and things have certainly changed. New faces everywhere but thankfully plenty of old familiar ones... some of whom where actually pleased to see me!
I got some great news about a work colleague who is also off ill. She was unfortunately struck down with Guillain Barre Syndrome in February but is now making a really good recovery. I think about her often and pray she makes a full and speedy recovery soon and gets out of hospital. I'm only going to be in there for 4 - 6 weeks; she must have been there for 4 months so far! Two people with different diseases of the immune system in the one company must be pretty rare.

More good news came yesterday when I read Chris' blog. My fellow Hodgkins buddy has been through the mill this last week thinking he needed another dose of chemo and that maybe The Hodge was still floating around. He went to the hospital yesterday to be told he didn't need the chemo and that The Hodge look like it has gone! Just a wee three week course of rads to seal the deal of the clean PET and CT scans that he got. Too be honest, if it was me, I would have initially been a bit pissed about worrying for a week about chemo I wasn't going to get and then just totally relieved to get the clean scans! I'm over the moon for Chris, Vicky and the children.
Woo Hoo! The good news just keeps flowing and long way it continue. It's been a helluva a week already.

Now to just get Kelly clean scans for the hat-trick!

2007-05-28T16:40:00.000+01:00

Remission baby! Yeah!

I guess the title of this post kinda gives it away abit! We went for the scan results today to get the full story about what is going on inside me. Beyond my wildest dreams my miracle working oncologist says, calm as you like, "Yup. Your scan results are fine. I'd put you in clinical remission... but you're still going for SCT to seal the deal.". No problemo!!

I don't know about Veronica, but I was completely stunned. I was only hoping for some sort of shrinkage in the chest area going forward into SCT to prove I didn't have chemo resistant disease... I never dared dream about being put into remission. Looks like my onc has pulled the miracle out of the bag and, as Bender says, The Hodge can Bite my Shiny Metal Ass. We've beaten the bastard again and this time it is going to stay beaten.

We left the hospital and celebrated in typical fashion... a massive full Scottish fry up breakfast with all the trimmings and then a nap when I got home.

It's hard for me to explain the feelings I have right now. I've been here before and had it all taken away from me. I'd say it's just utter and absolute relief. No joy, no ecstasy, just pure relief!

2007-05-27T20:55:00.001+01:00

Chemo Brain... does it ever go away?

Today we arranged to treat some good friends and their kiddies for lunch. Claire and Steve have been so supportive over this last year and have dropped everything on a good number of occasions now when I have had to rush into hospital and things of that nature. When you think that they have two kiddies the same age as ours it can't have been easy on them. Anyway, this was just our little token way of saying "Thanks"... we'll try and get them out for an evening meal without the children soon.
So we set out to meet them at the restaurant (well, pub with children's play area) only to discover when we got there that it is closed for renovations... not a good start. 5 minutes of humming and ha-ing and we choose the next decent pub lunch place and set off.
I'm thinking to myself that the kiddie mobile is running really well after its recent service and that my mechanic has really done a good job. The pedals feel soft and responsive and I have a quick look down at them. I look back to the road and then look back down again.
Bugger...
I've got my slippers on.
I'm going out in public, for a meal, and I've got my damn slippers on.
D'oh!
Veronica, as supportive as ever, does her best to not wet herself laughing and, fair play to her, she just about manages it although I'm going to be ribbed about it for the foreseeable future.
The food was typical bar food but the company was great. The weans trashed the place and ate next to nothing as they just wanted to go and play in the play area. I managed to squeeze in a Fat-Boy Mixed grill... even after the huge Chinese meal last night. I need to lose weight before transplant, not pile it on! It's just so good having taste buds again though!

Well it's off to see my oncologist tomorrow morning for the full results of the CT Scan. Even though I know they are going to be OK I'm still a bit nervous about it... ever the pessimist!
Wish us luck!

2007-05-26T19:20:00.000+01:00

A nice family day out

We took the girls out to a localish park a few miles away from the house today to let them burn off some energy. Veronica and I were getting a bit of the the cabin fever feelings so we needed wide open space and kiddie entertainment. The Kings Park in Stirling was perfect. The weans had a total blast and we just enjoyed them enjoying themselves. It's been a while since we've been out as a family like that as I've always been too knackered so it was really cool... although my bum is a bit sore from the roundabout thingy in the picture above. In order to pedal I had to sit back off the seat (it is a wean ride after all) and position the bar carefully between my cheeks. Being a man with a couple of pounds of spare fat on his behind you'd have thought it would be comfortable enough but no. It knacked!
So after the park we went for a nice lunch and then headed back home. The girls played outside with friends and then they finally had a bath and went to bed. Veronica and I then had a lovely Chinese takeaway to finish the day off and, as usual, we both over ate and just beached up on the sofas like a couple of whales for the rest of the night.

Now having read Kelly's recent blog entry at Chemopalooza I've decided I need to talk Veronica into a trip to Boston once all this is over. I'm sure someone will have Erin and Rebecca for a long weekend. I really want to do a DUCK tour!! I'll then need to visit tacky Kitty O'Sheas and then, if time, nip down to The Beachcomber in Quincy and catch Black 47 playing live. I'd also love to watch a Celtics game or failing that a Patriots game. I don't "get" baseball so I'm not to arsed about watching the Red Sox but I could probably go a Bruins game if I was guaranteed a good punch up!

2007-05-25T18:26:00.001+01:00

The preliminary scan results are in...

and they're gooooooood!
I called my haematology nurse today to see if I actually had an appointment to get my results on Monday as my onc is a bit forgetful. True to form he hadn't made me one but the nurse said there is no way the CT results will be back by then. I was advised to call in on Monday morning and if they did happen to be ready then I could come in to discuss them. On a whim she decided to check my records and the results were there. She wasn't going to volunteer what was in the report so I asked up front for a sneak preview.
"Well, bearing in mind the consultant hasn't looked at it yet I can tell you that it is good news and the mass in the chest has shrunk back. I can't give you sizes and figures as your full notes aren't here but it HAS SHRUNK BACK".

Woo Hoo!
(In case you don't understand the picture; I play the part of Paul McStay and the Huns play the part of the Hodge... beaten again!)

That's two bits of good news I've had in one day. I was in MACTU getting my weekly line clean and I was told there that I am infection clear and all my blood cultures taken on Wednesday were negative and all clear.
I can't take all this good news. It's unusual for us. It must be all the positive vibes and prayers coming from everywhere and everyone

In other news of the good variety we have now topped the £1000 / $2000 mark for the sponsored walk. How chuffed are we!

2007-05-24T21:36:00.000+01:00

Visiting my new "home"

On a wee bit of a downer today.
Partly due to nerves waiting for the CT results and partly due to the visit Veronica and I had through at the Glasgow SCT unit this afternoon. We got to have a look around where I would be staying for 4 to 6 weeks and I guess it finally hit home that this procedure is happening. I'm well aware that I can say "no" but it is not an option when you so want to live as much as I do. The doctor was really upbeat and positive and the care fairy we met was lovely so I have absolutely no problems with the level of care I'll recieve. Who knows, I could be one of the people that sail through the procedure with no major problems, but the thought of leaving Veronica and the girls for so long tears me apart inside... they'll change so much in that time... especially my little bear, Rebecca. God, I'll miss them.

But hey. What's 4 - 6 weeks when the procedure will give me years and years.
Oh, and thanks to everyone for their thoughts, prayers and positive vibes. I really appreciate it.

2007-05-23T22:05:00.001+01:00

Now we wait!

The CT scan went smoothly as usual but the gunk they make you drink still makes me want to baulk! Let's just say I had a rather unpleasant experience with Pernod when I was in Benidorm with "the lads" when I was 18. I haven't touched the stuff since but this liquid they make you drink for the CT scan tastes identical. Urrrrgh! It's hard for me to keep it down. The CT technician promised she'd do her best to give me good scans so now I just wait... and I am not a good waiter!

I went into work in Edinburgh after the scan to find that they had raised an amazing £410 ($800) for Erin and Rebecca's sponsored walk! Man, was I taken aback with that. I was speechless when I was told. I can't thank everyone enough for all they have contributed to this excellent cause. The Lymphoma Association will really appreciate it! Thank-you!

After much hand-shaking and cuddles from people I hadn't seen for a few months I managed to escape the work place with a fellow IT nerd and we went to the local snooker hall for a greasy fat burger and a couple of frames. Word of warning... it can be tricky to play snooker with a Hickman line dangling from your chest. I lost count of the times I thought I was going to pull it out by playing a shot that had me right down on the table. However, it just felt so damn good to be doing normal things again that I completely 100% forgot about the Hodge for a period and it was gooooood.

Oh... and I won the snooker match as well. Nae luck, Stevie-boy!

2007-05-22T18:54:00.001+01:00

Lungs A-OK.

Got to the hospital nice and early today only to spend 20 minutes looking for a parking space. It was bedlam there today. I've never seen a hospital so busy.
Anyway the lung tests were straight forward enough... just breathing into a big machine and carrying out three different procedures. A lung volume test, a "speed" test (how quickly I can exhale the air in my lungs) and a gas mixture test. Mine are all with "normal ranges" so the tester reckons that, as far as the old lungs go, I'm fit enough for transpGlant. I still intend to work on getting them stronger though as it can't hurt, can it?

From the respiratory lab I went along to get my antibiotics. I also got some blood work results back from yesterday that showed my haemoglobin was still lower than normal (97) but on the up so I had to be happy with that. At around 1230 I was ready to go and just walking out of the ward when the care fairy called me back. There was a PS in my notes that said my oncologist wanted to see me after my final antibiotic dose. She phoned him up and he said he would be there by 1500! Oh, well. Another day wasted as there was no way in hell I was leaving the hospital in the car and having to come back to fight for a space.
1500 arrived and the onc appeared. Asked if I was OK, checked my blood results and said "All is fine; see you later."!
A 2 and a half hour wait for a 40 second consultation. Pah.

Better safe than sorry, I suppose, but it meant I didn't have time to cook my gorgeous Irish stew for dinner as I need a good 4 hours to do it. I'll do it on Sunday.

2007-05-21T18:59:00.000+01:00

Stealing the famous words of my man Peter Griffin ( on the left) I'm still feeling "pretty frickin' sweet."
Another productive day and not feeling too tired. I'd say I was about 75 - 80 percent normal but it's hard to gauge as I can't really remember what feeling normal is like... it's been that long.
Was at the hospital for my antibiotics and the care fairies thought I looked a bit peaky and might need more blood so they took a full blood count. I haven't had a call back so I guess everything checked out and it was just my post-chemo "washed out look" and nothing to worry about.

Had a wander around Stirling town centre and picked up a few books to keep me going. Setup the webcam to my folks on the new computer (which looks damn good on my huge LCD TV), cooked dinner and now I'm doing nowt for the rest of the night except having a bath and drinking root beer. Hey, at least it has beer in its name!

Tomorrow is my checks on my lung capacity. This could be interesting seeing as I've just finished chemo, have a line infection and have done zero exercise for a good while now. I think I'll ask for a re-check in 3 weeks time once I've built up some more strength. I think it would give an interesting comparison.

2007-05-20T22:37:00.000+01:00

What a difference a day makes

Well. Things have certainly changed for the better today. For one thing I haven't had a nap... although I didn't get up until 1030! Having said that I can't honestly remember the last time I stayed awake for more than 12 hours.
I went to the hospital as planned for my antibiotics at 1200 and then did the family weekly shopping on my way back home. It's good when I do the shopping as I can slip in some Ben and Jerrys without getting nagged. I even managed to setup the new computer we bought for the girls that's been sitting around in the cupboard for a week. I'm feeling pretty damn pleased with myself and I have regained the confidence I need that I will be physically strong enough for the SCT procedure.

It is a great weight lifted off my shoulders. Now I just need to get hold of an exercise bike to build up my lung capacity.

2007-05-19T17:57:00.000+01:00

Two steps forward and one step back

That's me back from another two night visit with my favourite nurses in hospital. It's pretty funny how a day pans out.
I got up early (for me!) on Thursday morning as I had the 0810 appointment with the cardiologist for my pre-transplant test. I'd bought a gift and a thank-you card for the nursing staff who took care of me during the DHAP chemo and thought I would pop it in whilst I was there. So I get to the hospital at 0800 and hand in the pressie and pretty much left it at "I hope to never see any of you again in a professional capacity!" They wished me all the best, made me promise to let them know how the transplant went and off I went for the heart test. That was just an ultrasound and my heart is "strong as an ox".
I get home and have a nap but notice I've got a low level headache on the go. I rest up for most of the day, have a bath and then around 1800 I feel pretty warm and the headache is still there. Then the fatal words from Veronica... "I think you should maybe take your temperature". I do and it is at 38.5C (101.3F).
Poo. Anything over 38C (100.4F) has to be phoned in. I phone in and am ordered back to the hospital and back to my favourite ward. The irony of it all was not lost on either myself or the nursing staff. We had a laugh about it anyway.
Long story short. Antibiotics administered straight away, chest x-ray, every test know to man and blood cultures taken. These showed (after 30hours growth) that I had another bloody line infection so now we're trying to save the Hickman line for transplant. However, if there is any hint of any infection before transplant, it is being whipped out and a new one placed in the other side of my chest.
My haemoglobin was low again so I had another 2 units of blood and I was 0.5 on the neurophiles scale... not quite neutropenic but showed that I was at the lowest point (blood-wise) of my chemo cycle and explained why I was getting tired again.
Only one "exciting" thing happened during my stay this time but it was enough to keep me awake panicking all night. I was examined by a junior doctor and then again by the SHO (senior house officer). Remember these dudes are not haematologists or oncologists. They are "catch all doctors" pretty much still learning their trade. I asked the SHO what he thought was going on and he said, without any hesitation, "I think your bone marrow is failing" and walked out the room.
Talk about tactless!! I couldn't speak to my onc until the next day and he said that that was "a load of crap" but the damage had been done... a nights sleep had been lost and I was worried sick!

So it's another week of hospital visits ahead for antibiotics and if I couple that up with a lung test, CT scan and a visit to Glasgow to the transplant department it means neither Veronica or I are in for much of a rest.

We really need to catch a break.

As a side note... A big big thank-you to the anonymous poster for their comments to my last post. It's really helped me alot and I really appreciate it. Thank-you.
Kelly, thanks for the positives. I think they reached me in Scotland at 0500 when I finally calmed down and fell asleep!
Cath, I'm certainly not inspiring! A pain in the arse, maybe, but no inspiration. Ask the missus!! I really appreciate the help and support you have given to us through baby-sitting etc... you too May. Thank-you and when are you coming to take that cushion away?

I also got my root beer! Found an online supplier in the UK and got a crate delivered next day along with a crate of proper cream soda. I'm going to be burping all week.

2007-05-16T21:22:00.000+01:00

Pretty uneventful, these last few days.
Got in the car for the first time in what must be 2 months and took a drive out to PC World to get a cable for the new computer we've bought for Erin. 30mins each way and I managed to buy the wrong damn thing... bit embarrassing really, seeing as I work in IT! I just could not find the energy to drive back and change it so I nipped onto ebay and bought one there at a third of the price of rip-off-World.
I now have my pre-transplant cardiology tests tomorrow. The hospital 'phoned this afternoon and Veronica took the call. They have a cancellation and could I make it in tomorrow at 0810! Veronica agreed to it on my behalf but unfortunately didn't ask what the tests are so I have no idea how long I'll be in or what they will do to me. I've tried to Google for info but can't really find any.

Generally I'm feeling OK but pretty low, if I'm honest. I know I shouldn't get frustrated at my lack of energy and I am definitely getting stronger everyday but every time I need to go for an afternoon kip I feel I am wasting time that I should be spending with the girls before transplant. I think I may have to take Veronica's advice and see a councillor. I don't want to end up getting a depression on top of everything else and maybe offloading to someone "not involved" is the way forward. I'll mull it over for a day or two.

I wish I could be a bit more upbeat like Kelly Kane over at Chemopalooza. Her blog is real fun and uplifting... this one just seems to be turning into some sort of morbid rant! I don't recall feeling like this at all during my ABVD treatment so I guess this is all just because of the relapse and the fact that I am currently in between treatments, in between scans and still not totally 100% sure what lies ahead... I hate the feeling that The Hodge might still be there but nothing is being done to it for a few week allowing it to regroup for another attack.

Sorry for this entry. Maybe this is the way I should off-load as I feel better for it.
Doesn't make good reading though!

2007-05-15T16:44:00.000+01:00

ROOT BEER!

Anyone know where I can get root beer from??
I am totally craving it today but can't find it in any shops.

I should have been American.
I could go a twinkie as well

2007-05-13T20:47:00.000+01:00

A very proud Daddy

We all finished! Even me!

Today was a very proud day for me and Veronica. Today our little girls, who are only 3 and a bit and 18 months remember, carried out a two-mile sponsored walk in aid of the Lymphoma Association... a charity based in the UK. Rebecca, the youngest, didn't quite manage the whole distance but she wasn't far of it... stubborn little monkey loves to walk and literally walks till she drops.

I'm not doing it again!

All in all we think we will have raised about £700 for the Association and I couldn't be prouder of the achievement of these two little angels.
From a personal point of view I was a little proud that even I managed to walk the distance. It just shows you what a couple of pints of fresh blood can do for your system! I haven't even been able to walk to the local shop these last few weeks so a two mile walk seemed a bit of an impossibility. The blood appears to have done the trick.

Onwards and upwards!

2007-05-12T20:20:00.000+01:00

I arrived at the hospital for 9am sharp this morning. Unfortunately my blood wasn't as punctual! The blood people had definitely set 2 units aside for me but they couldn't remember quite what fridge they had placed it in over night. Finally, after a poor porter searching the entire hospital, it turned up in a fridge in one of the surgical units. Thank goodness for that as I really didn't want to go home "bloodless".
The rest of the day was pretty uneventful. Just lounged around whilst hooked up to the drip feeding me someone elses blood. Played Nintendo, read, eat some food... usual stuff. My caring fairies for the day were Claire and Gillian and, as usual, I was superbly looked after with tea and biccys offered every half an hour.

I got a bit of s shock half way through the transfusion. A girl who has going through ABVD at the same time and pace as me last year came into the unit so I got talking to her husband. Seems exactly the same thing that is happening to me is happening to her... she is just two weeks behind me!
She had 12 lots of ABVD (like me) and was given the all clear (like me) after PET.
No need for radio (like me.... hmmmmmmm)
3 months later the routine CT scan show growth. Unfortunately for this girl it also shows new growth.
Cancer back, line installed, DHAP, stem cell harvest and transplant. (like me)

Now I don't know exactly how many new cases of Hodgkins our shared oncologist gets each year but it can't be many. I'd say 4. He must be devastated that 2 have to go to transplant. This is not how this disease should be responding to treatment. Guess what? I blame the lack of radiotherapy. I've now read over 100 German case studies and trials on the importance of treating Hodgkins (especially early stage 1 and II disease) with combined chemo and radio therapy. Why the UK can't accept these findings and insists on carrying out needless clinical trials in an area that has extensively been covered by the Germans is beyond me. Is it purely to fleece R and D money from government or is it xenophobia and jingoism because it is "The Germans" who have carried out the research and the Brits can't be seen to be following a German lead.
Pisses me right off!!

Oh yeah. Notice the piccy in the top left corner? If you are able to donate blood then please do. You don't realise what an altruistic thing it is that you are doing but it really helps save lives and will help save mine.
I'm blood type "O RhD negative". Unfortunately (according to Google) only 6% of the UK carries this blood type and there are only 2300 units left in stock. If you have the same get your arse to a blood bank asap!!!
In fact get your arse to a blood bank anyway.

2007-05-11T18:19:00.000+01:00

Thankfully the depression lifted yesterday and the last two days have been pretty OK. I'm still completely whacked out and feel like I've been hit by a bus and, after blood tests today, I know why.
Veronica and I went to a new unit for us in Falkirk today. The P.I.T.U. Progressive Intensive Treatment Unit. A grand title for somewhere I was going to just get my weekly line care and bloodwork carried out!
When we finally found the place after 20mins searching we waiting another 90 minutes for the blood results.
Basically, I'm totally anemic. My haemoglobin level is 7.1 when it should be between 12.5 and 18.0. This is common on DHAP and fully explains why I look like a ghost and have zero energy... i have no red blood cells! Ironically, my white blood count wasn't too bad!

All this means another visit to the hospital in Stirling tomorrow for a blood transfusion. I'll be getting 2 units of blood and the procedure takes about 3 hours per unit. That's another day written off but at least my lard arse will be in a chair all day! It'll be another "first" for me as so far I've escaped the clutches of the vampires at the blood transfusion service.

These last couple of months have certainly been "interesting".

2007-05-09T13:15:00.000+01:00

And so the steroid drop-off starts and the come down begins. My brain enters the abyss of blackness again. Hopefully it will be a short visit.

I've always had a dislike for Wednesday. Furthest day from the weekend you've just had and furthest day to the next one. It's always been a bit of a bad day for me but today has been a cracker and below gives you a rough insight into one of Wullie's steroid come downs.

Today I have:-
1) started to put my financial affairs in order
2) listed things I want to say to the girls at various stages as they grow up. Fortunately I couldn't find the camcorder to commit them to DVD
3) Tried to think of some witty "last words"
4) Planned my funeral, including speeches and hymns, in intricate detail. Realised Glasgow Cathedral would be a bit big so settled for Dunblane instead. Celtic squad probably won't be able to make it. The Pope might also be busy that day.
5) Should I haunt Veronica if she meets someone else?
6) Will my girls remember me?

I've said it before and I'll say it again.
I can do chemo all day every day. My brain just can't do steroids.

But I know tomorrow will be a better, brighter day.

2007-05-08T07:54:00.000+01:00

I hope that you haven't been refreshing your web page looking for some sort of update because, unbelievably for me in recent weeks, absolutely bugger all is happening and it's great!

I feel fine. Just the usual tiredness and the complete lack of any taste-buds whatsoever. It is the weirdest side effect I have ever had and is a surreal experience I hope to never have again.
Yesterday, for lunch, I made a Ravioli, mixed with a Minestrone Cup-a-Soup, chucked in a few pickled onions and some extra hot peri-peri sauce and tasted.... nothing! Now this is not a combination of food that I would normally mix together but I just had to taste something! Once that failed I knew it was pointless trying anything else.... even a Chicken Phaal from the Indian wouldn't cut it as I'd had a South Indian Chilli Garlic Chicken curry a couple of days before and that tasted like a big fat zero as well! So, if anyone in the IT Department at work is going to Lier anytime soon can they bring me back one of those kebabs please? I can still taste that baby if I think about it!!
The only relief from the mouth is lollies. Lots and lots and lots of ice-lollies. Food of the Gods. If you are ever on chemo make sure your freezer is stocked with lollies.

2007-05-05T20:11:00.000+01:00

Another mountain climbed. Another hurdle negotiated. Another milestone reached. Blah blah blah!

We've made it through the third and final cycle of DHAP chemotherapy and I now have a break from being poisoned for a good month. Alleluia!
I went into hospital on Tuesday full of anxiety due to the messy nature of the last time but I needn't have worried. Apart from the fact that the lab managed to lose my 24 hour kidney urine sample (please explain to me how you can lose a whole GALLON of wee wee) and thus delaying chemo for a for a couple of hours whilst they could the kidney results via bloodwork it was smooth going. There was a slight concern with some blood levels... my haemoglobin and magnesium levels where a bit low but they managed to stay high enough for me to avoid the hassle of a blood transfusion so I was really pleased about that.
No sleep again in the hospital but that's ok. I'm home now and can hopefully catch up over the next few days. Veronica and I are both pretty beat up and tired but delighted that we have gotten over these last couple of months relatively easily. Looking back you realise just how much worse it could have been. Don't get me wrong now.... it has been really tough but at the end of the day I am still here and fighting and that is all I can ask for.

As far as I am concerned I now have only one procedure left to go and that will be it. The date for the Stem Cell Transplant came through today. I get admitted to Glasgow Royal on 19th June 2007 and my final seven sessions of chemo EVER will start on the 20th. If all goes well my stem cells will be re-introduced and I will be "re-born" on the 28th June 2007. I'll then have three to four more weeks in hospital whilst my immune system regrows.

Oh.
I'll be cured after all that as well!!!!
I'm sure of it.

2007-04-28T12:35:00.000+01:00

Veronica and I met the Stem Cell Transplant consultant in Glasgow on Thursday and had a good chat for 30minutes.
The consultant basically went through all the cons of having the treatment (pneumonia, feeling like shit, not able to eat or swallow without pain, sickness, infections galore, chronic heartburn, secondary cancers, leukemia, heart lung or kidney problems, chances of marrow not recovering and mortality rates during treatment) and then the pros of having the treatment... cure from the Hodge or long term remission from the Hodge. Unfortunately the pros don't come with a guarantee.

All in all I guess the pros do outweigh the cons but it isn't as cut and dried as you might think. I've done a lot of soul searching and deep thought before deciding that I will go ahead with it. I've been looking for other avenues of treatment. For example if, after my final course of DHAP, I am in full remission with no evidence of disease and my chest mass has shrunk back by say 50% would a month of high intensity radiotherapy be a better option and save the SCT for possible relapse?
Veronica put this to the consultant who said that there could be arguments for going down that route BUT if I did relapse again the SCT would be so so much harder with much greater risks.
He said the best chance for cure right now is to go to transplant and save the radiotherapy in the armoury for later. If my chest mass is still fairly large I would have the radio at a later date to shrink it back and seal the deal.

I'm now at peace with the decision I have made and will spent all my time after my final DHAP chemo in getting my strength and stamina up for transplant. It's not going to be easy and I expect some really rocky time ahead but there won't be anything I can't deal with. The hardest part will be the 4 - 5 week hospital stay as I'll miss the family but as I said to Veronica... "I've been to Hell when Erin was born and rushed to intensive care. This is just a return visit and I can deal with it again."

Bring it on.

2007-04-24T15:26:00.000+01:00

Drum roll please.
The counts are in and the total number of stem cells for yesterday and today is:-

5 million

That'll do me. I creamed off 1.8million yesterday and 3.2miliion this morning. We're over the moon.

Now off for a nap.

2007-04-23T17:31:00.000+01:00

Phase One of Harvest complete!

My heroine Veronica having a well earned soup break!

Me and my buddy. It looks like it pre-date WWII.

Bag of live saving stem cell goodness!!!

We arrived at the hospital in Glasgow at 0900 sharp and bloods were taken to get a full count and see what was in it. We came back at 1100 to mixed but, ultimately in the great scheme of things, great news. My blood hadn't recovered yet. It looks like it is just starting too BUT we can probably whap of 1million of the 4 million stem cells required today. Worst case scenario is it will take 4 days to get the figure required... best case is that I'll have a whoosh of cells overnight and I'll only need to be hooked up again on Tuesday.
I was delighted.
Because of the battering my bone marrow has taken with chemotherapy over the last year it would have been no surprise to anyone if they hadn't found any stem cells. My marrow just hasn't had time to recover. If it takes 4 days then it takes 4 days. I'm just grateful there is something there!
I was then hooked up to the machine that you can see in the photo and we were pretty much left alone for 4 hours. the machine just did it stuff and I ended up with a lovely bag of life-saving stem cell goodness.

Unhooked, home, knackered and ready for bed. Early nights all round for another early start tomorrow.