Friday, March 30, 2007

Wow. Has it been four days since I updated this thing? Sorry about that.
Not a lot has been happening really. I haven't actually left my bed except for a small trip to the hospital this morning to get weekly maintenance on my Hickman.
I am absolutely shattered and just want to sleep. It is completely the opposite to the ABVD where I wouldn't sleep for days at a time. Just now I sleep all night and part of the day. I'm worse than Rebecca and that child loves her sleep.
Physically, I feel fine. No aches and pains and no sickness and nausea. The high dose of steroids frazzled my brain on Tuesday and Wednesday and my normally placid demeanour was replaced with a raging anger that would blow at the slightest thing... just as well Celtic weren't playing this week. I don't know how my dogs are still alive as the slightest "woof" would see me tearing down the stairs with a rolled up paper.
Now the steroids have worn off I feel a little guilty and ashamed... poor puppies.

The problem with sticking in bed all day is that you think to much... and I can't stop thinking about radiotherapy and "what if". I know it is not healthy and that I won't be doing it when I'm up and about as normal next week but I can't help it. I stll cannot believe that someone thought that I shouldn't get radiotherapy because of the risk of some lung tox and a theoretical statistcally increased chance of secondary cancer in later life. All I'm after right now is the "later life" part. Also, I think with the high doses of chemo I am going to get in the near future I won't be able to get it again so I'm thinking I'm really hosed if I do get cancer later on anyway.
As a result of my now deep mistrust of Glasgow I have decided to ask my Oncologist if there is any other location in Scotland that can carry out the SCT. I'm hoping Dundee might be able to do it as they have a superb MacMillan Cancer Centre up there but, because of the way that things work in this damn country, I suspect this sort of treatment is available in Glasgow only.

The girls are doing great. We don't quite know what we are going to do with Erin over the next fortnight. Nursery has broken up for the Easter Holidays and she is going to miss it like crazy. She's taken to it like a duck to water and loves every second of it. Hopefully this will stick with her throughout her school life but I look forwarding to seeing what happens when she turns teenager.
Becca is still not really talking yet. She babbles away to herself and, although she seems to know what she is saying, it doesn't make a jot of sence to me. I think I can hear "Daddy" and "Kelly" (the dog) but I'm not convinced. The child is, however, going to be trouble. She has that glint in her eye and already knows what buttons to press if she requires a reaction. She is learning to quickly from Erin.
Veronica, as ever, is being a saint. I don't know how carers do it. They have to get on with their lives, work, look after the children and yet they still manage to look after a 32year old lump of a man who is slumped in bed feeling sorry for himself. I wouldn't be able to get through this without her and words can't express the gratitude and love I feel. I'd better not say too much though or I'll be paying her back in kind for the rest of our long lives!!

Slán go fóill mo chara.

Monday, March 26, 2007

Mum, Dad, cover your eyes!

I fucking hate this disease.
I fucking hate the way it just sits there and eats away at you for years without a sign.
I hate the sneaky little way it has crept back into my life when all was going well.
I hate the pain and worry it is causing to friends and family more than anything.
I hate the pressure it is putting Veronica under.
I hate not being able to play with my kids right now.
I hate being stuck in bed as I'm knackered from chemo

But for all that I hate this fucking disease it has changed me for the better as a person.
I love my wife.
I love my kids.
Perspectives have changed. No longer is the next big gadget top of the list. All I want is a smile from the girls and a cuddle. Family comes first.... I've not even got a PS3!!
I'm a more positive person.
I'm a stronger person.
I've met some truly remarkable people who tell me to keep fighting.
I'm very humbled when I think of all the people working to cure me and all the people just thinking and praying for me.

So, in conclusion, Hodgkins; you may have improved me in your own warped little way but I am going to kill you. I'm sure that dose of chemo I have just had has already seen to that.
Now let's make sure you don't come back with another couple more doses of magic juice.

Sunday, March 25, 2007

1 down, 2 to go.
Well now. That wasn't too bad.
I got out of hospital yesterday afternoon and pretty much went straight to bed until this afternoon.
The chemo is certainly stronger than the ABVD I have had in the past, and I did have need to throw up a couple of times on Saturday morning, but it is easily do-able. I'm pretty sure the sickness was due to some extremely intensive heart burn that the steroids seemed to give me. A couple of magic gastric pills later and I've been right as rain. I've had my last dose of steroids for this treatment cycle so I'm hoping the "thick head" syndrome I'm experiencing will be away tomorrow and I can get some quality play-time in with the weans.
I really missed them! Even the crying of 'Becca at 0530 this morning brought a huge smile to my face although I don't think Veronica saw the funny side!

Not really too much to say about the hospital visit. Sat in a bed and got chemo and fluids through a drip for 48 hours and that was about it. Watched a few movies and read a bit but nothing more exciting than that. The secret is to not watch the clock as it really is a boring place. A bed bath request was refused by the kind nursing staff so I didn't even experience that perk! Oh well.

So my plans for this week are to basically build my strength up for Round 2 on April 10th. Treatment wise nothing is happening this week except a routine cleanout of my Hickman line and I'll also need to go into my workplace and discuss things with my boss and HR. They have been absolutely brilliant to me throughout this experience and I hope I can repay it all back sometime. Judging how I'm feeling right now I am definitely up for some home working. Work focuses the mind and means you can forget other things!

Thanks again for all the prayers and thoughts. They have certainly given me the strength to get through this.

Tuesday, March 20, 2007

Life on Mars has just started so this'll be brief.
I go into Stirling Royal tomorrow at 1500 so this'll be my last update for a few days unless they have web access.... which I doubt with the NHS.
I'll get an E.C.G on my heart tomorrow to make sure it is up to the chemo and then we begin on Thursday morning. The timescales for my fun are roughly as below:-
  • 0700 Thu - get 6 hours fluids into my Hickman
  • 1300 Thu - get 24 hours of cisplatin into Hickman
  • 1300 Fri - get 9 hours fluids
  • 2200 Fri - get 3 hours of cytarabine
  • 0100 Sat - get another 12hours of fluids
  • 1300 Sat - Get final 3 hour bag of cytarabine
  • 1600 Sat - couple of hours of fluids
During this time I'll no doubt be popping various drugs.
I'll be doing drugs Robbie Williams has never heard off!!
The chemo doesn't worry me... it's the boredom of being in hospital. I've got the laptop for DVDs and the Nintendo DS as well as books and magazines. Hopefully this'll get me through.

Hopefully I'll be home on Sunday morning. I'll let you know how I got on.

If I happen to cross your mind between Thursday and Saturday please send me some positive vibes!

Sunday, March 18, 2007

What the....!!?
Celtic have just been beaten by Falkirk... 1 - 0
And we missed a bloody penalty.

Still no slippers. I'm pretty sure now Becca has shoved them in the bin... she has previous.

Saturday, March 17, 2007

Happy St. Patricks Day!
Not a lot happening today. We're all just trying to stay focused about the journey ahead.
The folks gave up their Saturday night so that Veronica and I got nip out for a meal. I won't be allowed restaurant/takeaway food for a while so we decided to go out and stuff our faces.
In case you're in or around Stirling I highly recommend The Wiliwan Thai restaurant. The food is absoulutely stunning.
The Hickman Line is a bit annoying, to be honest. It looks odd under t-shirts and the children seem to have this sixth sense and the keep grabbing and pulling it. They don't know there is anything there but keep gravitating towards it. I wonder if it will stay in place or if Rebeeca will be able to swing from it safely??

Friday, March 16, 2007

Just a quick post to show you all the reason I will and have to win this fight. I will see these two little monkeys grow up. (Rebecca left and Erin right)

Thursday, March 15, 2007

So today I got my Hickman line installed. No big deal this really. Veronica and I turned up at the hospital at 0830 with my 24h sample of wee wee in hand. This will be used to make sure my kidneys are up to the harsher DHAP chemo.
I gave some blood and we then waiting a couple of hours before I was wheeled down to radio for the "procedure".
One local anaesthetic and some sedatives from my personal sleep fairy, a bit of pushing and pulling from the radiologist and the thing was fitted. I think it took about 30 minutes but I'm not sure. I thought I was really brave and came back to tell Veronica that I had just had it done under local. Then vague memories of drunk like singing in the theatre crept into my head and I realised I must have awake but completely wasted!!
My right "man-boob" now looks like it has two udders swinging underneath it. I can't think of better way of describing it. I'll post a piccy as soon as I get a chance.

Finally, my damn slippers still haven't shown up yet.
I'm starting to suspect small child and bin right now.

Tuesday, March 13, 2007

Somehow Monday night turns into Tuesday morning. I don't think either me or my wife got a great deal of sleep. When I did manage to grab some zzzs I would wake up and have that gorgeous hazy feeling that everything is ok... then the brain would kick in and it would all come flooding back.


I'm just struggling to understand and accept at the moment. I'm google'ing everything to see if the growth in my chest could be something else but I can't find anything! I feel great physically and don't have any symptoms.... how the hell can it be back?
I guess I should be grateful that such an early CT picked up something so that I can get treated asap but I'm not. I'm angry. I've had a clean PET and told I'm in remission. I feel cheated.

My oncologist nurse from the hospital has called and explained the next steps in my fight with "The Hodge". I think alot was said yesterday but my head was a bit mashed to take it in. I stick her on speaker phone so that my sane, level-head and beautiful wife can hear as well.
Basically I'm going to go into hospital as an out-patient on Thursday 15th March and get a central line / Hickman line fitted. This is just to make the administration of the chemo a lot easier. I'll then have a few days at home and on Wednesday 21st I'll be admitted to hospital for 4 nights.
Woo, and indeed, Hoo. Can't wait.
On Thursday I'll start my treatment (called DHAP) and that'll last until Saturday. All going well I can leave on Sunday and have a couple of weeks rest before it kicks off again.
After my second course of DHAP I'll pop through to Glasgow Royal and have what is called a Stem Cell Harvest. This is in case they decide to give me the transplant. Seemingly it's no big deal (the harvest, that is) but I'll fill you in when I've learnt a bit more about it all. I'll probably have another CT scan done after this second course of chemo to make sure the little bugger in my chest is disappearing or, please God, has gone. I'll then have another rest period before the third and final dose of chemo.
All talk is of "Total erradication of disease" and "CURE". These are superb things to be hearing.

Sounds good, eh?

My folks have also come for a visit. Veronica and I need all the support we can get and they really are a comfort at a time like this. Sometimes you just need your Mummy and Daddy.
Family and friends are rallying round again in the same way as when I was first diagnosed last May. I know for a fact that Veronica gains great strength from all this love and support and she feeds this directly into my soul. Whenever I've been on a complete downer today she has somehow picked me up and got me positive again. We will beat this.
On a more personal note I've opened up my direct channel to my Grannie in heaven again. She gave me so much strength last time around and I'll know she'll be onhand to give it again whenever I need it.
I am truly blessed to have such positive people surrounding me.

Away from cancer, I can't find my slippers. Now, I don't live in a big house and it is quite hard to lose things, but I can't find the damn things anywhere. They're black, fluffy NEXT ones. Gimme a shout if you see them.

Monday, March 12, 2007

"Yeah. So... OK."
"We're not happy with your latest CT scan results"


"The scar tissue in your chest has grown a bit. I'm really sorry."
Never mind sorry; what the hell happens now.
"I'm going to go down the road of high dose chemotherapy followed by a Stem Cell Transplant. Sorry"

Veronica and I stumble from the oncologist in a state of absolute shock. This wasn't in the script. Only three months ago we were told "You're in complete 100% remission with little to no chance of
relapse!". How the hell did we get here? Today was supposed to be the day I could put the nightmare of the last 8 months behind me. What is going on?

My first thoughts are of total anger. I was supposed to undergo 4 weeks of radiotherapy after I was declared in remission but the Rads in Glasgow, in there infinite wisdom, decided I would be better of on a 'wait and see' program instead.
They tried to explain to me the risk of possibly developing breathing difficulties due to the scar tissue being close to my lungs. They just wouldn't listen to what I thought was the logical point of view of "I just want rid of the bloody cancer. Please zap it"

So, after three months of bliss, of living life to the full, of enjoying being able to play with my young children again and of even being back to work full-time I now have to go back on the chemo sauce and pray that I beat this bugger again... and I will.

I manage to hold it together pretty well for a couple of hours but then I go home. I open the door and see my two young children, Erin (3) and Rebecca (1). It's then I completely lose it and pretty much breakdown for the night.

Bit of a bummer really.