Saturday, April 28, 2007

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.

Tuesday, April 24, 2007

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.

Monday, April 23, 2007

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.

Sunday, April 22, 2007

Yeah. I know. Butter would melt!
Veronica has just finished explaining to me the tantrum Becca had thrown at the park today. It was Erin's turn in the swing but our little angel Rebecca was having none of it. 15 minutes later after screaming, throwing herself on the ground and rolling in mud she finally calmed down. Erin, meanwhile, just got on with things albeit a bit bemused with what her baby sister was up to!
Take a good look at Beccas eyes... there is a definite 'glint' there. The teenage years are going to be fun!
After swimming this morning and playing outside all afternoon they will hopefully pass out tonight and give me an unbroken sleep.

Finally, after weeks of stuttering from game to game, Celtic wrapped up the Scottish Premier League with a Shunsuke Nakamura freekick in the 2 minute of injury time. The goal from the Japanese Maestro means that bosses all over Scotland will be faced with a "plague of sickies" tomorrow as the drink flows into the wee small hours. If you want a party tonight then head for the green side of Glasgow! I'll celebrate in my own wee way... a cup of tea and a long old soak in the bath tonight with a good book. Not quite the same as going a bucket with the best of them but I'm looking forward to it!

Nothing much else to report as I've just been recovering. I've decided that I feel this way due to the infection and not the chemo. I'm really weak but everyday I'm getting that bit stronger and I know I'll be OK for chemo in 10 days time.
Tomorrow, however, we go through to Glasgow to hopefully bag me some stem cells. The procedure itself is really simple (they just hook my two lines up to a bit machine, take blood, whizz it round, grab the stem cells, and gimme it back) but takes the whole day. Firstly I'll have a Full Blood Count taken when I arrive. This'll be about 0930 and I'll get the results by midday. If all is ok I'll get hooked up to the machine and the harvest begins! If not I'm sent on my way and have to come back on Tuesday. It's completely out of my hands. The only thing I do know is that the magic number of cells we are looking to harvest is 4million. There is also a chance that we won't get enough off tomorrow even if the process happens. This also means a return trip the next day.

Thursday, April 19, 2007

Cool. That's two Neupogen injections I've just given myself this morning. These jabs will turn my bone marrow into a form of super blood making factory and hopefully I will be swimming in stem cells for Monday.
When I was on ABVD I would inject 3 times a week and the dose was 300mg. This time I'm jagging twice a day a total of 600mg.... 4 times as much as last time!!
I know how well this worked with me last time so I'm really confident that I'll have enough cells to harvest in one go.
Now to wait for the goodness to happen; and the back pain that follows. It is a good pain, though, and I have the EU mountain of paracetamol in the house.

Wednesday, April 18, 2007

Novena to Our Lady of Lourdes

Blessed be the Holy and Immaculate Conception of
The Virgin Mary Mother of God.
Our Lady of Lourdes, pray for us.
Health of the sick, pray for us.
Succour of sufferers, pray for us.
O Mary, conceived without sin,
Pray for us who have recourse to Thee

People who know me might find it strange for me to be posting a prayer. I don't come across as a deeply spiritual or religious person but, believe me, I have an unmovable and unbelievably strong belief in God. I'm Catholic and have very strong beliefs. They get me through when all else fails.
The prayer above is just offered up to all those going through any sort of illness right now. There are so many people in worse places than me. I'm still going to be cured... some people don't have that luxury or hope.

Not having to bad a day of it today. The small rhino living on my head has since been replaced by a feeling of having drunk 10 pints of crappy lager but that's a good thing. It means that the steroids are wearing off and hopefully I'll be "normal" on Friday. No nausea at all today and if I could just get some sleep! Sorry to keep repeating myself but I need sleep!
We're off for more antibiotics in a couple of hours so if anything major happens I'll report back but I'm really looking forward to a nice quiet night in front of the laptop; if I can get logged into Lord of the Rings Online (LOTRO). If not then there is always the Dresden Files on Sky to watch. Or Chelsea v West Ham.

Also, just thought I'd mention that I really think this mass in my chest is shrinking up. I have always felt that but today it is really strong. They always say you know your own body so hopefully I'm right and the tatical ground-assualt is paying dividends before we launch the WMDs.

Tuesday, April 17, 2007

Today was by far my worst "post chemo" day ever. They weren't kidding when they said DHAP would be tougher. I somehow managed to find a postion in bed that was comfortable and just didn't move for 4 hours straight. My head felt like an elephant was sitting on it and if I moved 1mm I thought I would throw-up.
As usual though it passed and Veronica got me into the hospital for my antibiotics; car sick again though... it's like being 6 years old!
On the positive side; both my lines are now giving blood so that'll make the harvest easier come Monday. My elephant is now a baby rhino so things are definetly getting better. A couple of good sleeps will sort me out.

Oh, and for all you budding body builders out there.
Large doses of steroids really really do shrink your wee willie winkie. Talk about hitting a man when he's down!

Monday, April 16, 2007

I'm resting in bed when... Brinnnng Brinnnnnng (that's the phone).
It's my oncology nurse.
"Afternoon, Wullie. We've decided to give you more antibiotics to make sure you're all clear. Can you get to the hospital everyday this week at 1530 so that we can give you them. Thanks. Bye"
All i wanted was a couple of clear days but that's all out the window again!
Arrrrrghh. It doesn't help that I feel crap and don't travel well after chemo. I get terrible motion sickness on the way into hozzie but it passes and the antibiotics are uneventful... except they leave my mouth tasting of soap.

Sunday, April 15, 2007

Well it's been a bit of an interesting week, to say the least! After thinking that all was under control last Thursday with the temperature it all went a bit wobbly. I'll try and roughly type up what's been happening although it might not make too much sense as I'm really knackered!

Friday 6th April
Went into Stirling Hospital this morning for weekly Hickman line clean. No major worries. temperature normal but one of the lines isn't giving blood off... but it does take the cleaning flush so that rules out a clot. The nurse takes some blood off to grow some cultures due to the temps I've had (just to check) and I'm sent on my merry way at 1030.
Couple of hours later and feeling ropey. Temp up again so I neck some pills. No good this time and the temp keeps rising. I call the hospital and am told to come straight in. Bloods have been neutropenic since Monday and enough is enough... it's time for IV antibiotics.
I'm in a side room by 1730 and hooked up to IVs within 2 hours. All purpose Domestos antibiotics until the cultures are grown. I also get a G-CSF growth factor shot to help get my white blood counts up.
By 2200 they know that I have an infection in my Hickman line and they know the flavour of it. It is very sensitive to antibiotics so I'm now on a 5 day course of it... 6 - 8 bags a day and no sign of getting home for a while. I hope my chemo will stay on schedule. It's due on Wednesday.

Saturday 7th April
Pretty rough night that. Temp up and down all night and for some reason I'm on a weird moving mattress that shifts your position in the middle of the night. It''s bloody annoying.
All in all it's a pretty quiet day though. Just spent battling the temperature and infection and watching crappy TV.
I was a bit pissed that I had to ask for my 2nd G-CSF jab though... not once but twice.

Sunday 8th April
Another lousy, sleepless night and I'm pretty down most of the day. Temperature seems to be coming down slowly so the antibiotics are obviously starting to kick in... thankfully. I'm just shattered and everything seems to be too much trouble. I've never had a temp take so much out of me before.
I finally get some good news late in the afternoon when I'm told that I'm no longer neutropenic. I have some form of immune system and that'll help the infection fight... and hopefully keep me on course for chemo.
Wishing for chemo. Am I mad?

Monday 9th April
No sleep again but this time due to the damn mattress. I get it changed to a nice normal one and all seems well with the world. Temperature is completely stable now so I guess the infection is clearing up. 10 more bags of antibiotics and that should be me.
Veronica comes to visit (as she does everyday) but I dose through the whole time. Must have been fun for her.

Tuesday 10th April
Good news this morning. Everyone is happy with my progress, the blood counts keep rising and I'm good to go for chemo tomorrow. Still not a great deal of sleep happening what with fire alarms during the night etc but all in all I'm feeling pretty good that things are on track. I do know that the battering I have had this week is going to make this round of chemo a bit tougher but I'm ready for it.

Wednesday 11th April
This is a post my wife added to the Hodgkins Forums. Say it all really!

Hi all,

So, long-suffering husband starts his 2nd round of DHAP yesterday. He should have anti-sickness steroids in the morning along with his Dexamethasone (The D of DHAP). It gets to 2pm and he asks AGAIN for his steroids as they stop him sleeping (bang goes another nights' sleep). Eventually they arrive at 2.30pm, along with the 1st of his 12 hour chemo infusions, which means he's missed a dose of anti-sickness stuff. Bear with me ..... this is just the start.
Poor guy - he has spent the last 5 days in a side-room as he was neutropenic and was quite enjoying the fact that he had a TV to himself, when he was turfed out to make way for another patient. He's pretty philosophical so took it quite well but it's not a great ward he's on.
His philosophical nature took a beating last night and I received a text message at 3:15am to say that he couldn't get his 2nd 12hour chemo infusion because 'there was no-one on the night shift qualified to administer chemo!' Tell me, please that this kind of nonsense is a one-off??
He finally got to sleep at 5am (the steroids having worn off by then) only to be woken at 7am when a qualified nurse was able to restart his chemo.....! Oh, someone's going to have some explaining to do....
Sorry for the rant...just want my husband home.

Thursday 12th April
Well after yesterday I hit rock bottom. I haven't been this low. Everything is on top of me and I can't cope. Veronica calls my oncology nurse and lets rip and she is on the phone to the ward within seconds of Veronica hanging up to see what the hell has been going on down here. I'm crapping myself that the delay in giving me the 2nd bag of chemo has ruined everything and my confidence in the clinical staff has gone.
I demand a second opinion.
All my old thoughts about radiotherapy come back and I feel that I shouldn't be here going through this if only they'd BLOODY GIVEN ME RADIOTHERAPY.
An oncologist turns up later that morning and we have a good chat. She explains the number of people who have looked at my films and scans and that the majority of people feel this is my best course of action. Some people thought radio but a majority thought SCT. She says the growth in my chest is 0.1cm only but caused them enough suspicion to treat. I can't get my head round this. To me this is tiny and no other nodes have lit up.
I'm so confused.

My oncology nurse arrives later in the day. She is truly a special person and can always get me out of my dark holes. She must have spent a good hour with Veronica and I and some frank discussions were had. She also assures us there is no way a treatment cockup like last night will ever happen again.
Im feeling brighter. I think Veronica is too. It cant be easier for her seeing me like this.

Friday 13th April
I'm going home.
Chemo was uneventful... a bit sicky this morning but nothing I can't handle. I just want to get home to my own bed.
I'm told at 11 I'll be going home and my main oncologist doesn't get to see me until 1500... then we wait until 1730 for my medication to arrive.
Ho Hum. More frustration but finally I'm away after exactly a week.

My girls get the biggest hugs of there little lives as soon as I walk through my front door.

I then crawled upto bed and slept the whole night.

Saturday 14th April
Slept and rested all day!!!!!

Thursday, April 05, 2007

I'm useless at keeping this thing in some sort of up-to-date state. I'll try harder but here are the last few days in a nutshell.

Veronica and I went through to Glasgow on Tuesday to have a meeting with the stem cell harvest team at the Glasgow Royal Infirmary. They basically just talked us through the procedure and showed us the equipment that is being used. All that happens is that on 23rd April I'll toddle across to Glasgow and get a blood test to see how high my CD34 count is. If all is OK I get hooked up to the funky machine for 3 - 4 hours and read a book or watch a movie... i might even talk to my wife. My blood goes into the machine, whizzes around for a bit and returns to me minus stem cells. It's really just a large centrifugal force machine. They then unhook me and take a sample from the bag and extrapolate from that the number of stem cells in it. The magic number that they want for me is 4 million. If they don't think there is enough then I come back the next day to top it up. It's all pretty straightforward. As usual I had the full head to toe medical examination and was yet again declared to be in A1 health EXCEPT for the little bugger in my chest. That's why I hate this disease so much. There is just no sign that there is anything wrong with me... let alone anything serious. I continually thank God that the node popped out of my neck last year because I suspect I would still be walking around with no clue that I was ill. The only slight problem was that I was running a slight temperature (37.8C) but seeing as I had checked out all OK with the Doc I was told to just take paracetamol.

Wednesday arrives and I wake up feeling fine. 11:00 comes and the temperature is back. I called my Oncology nurse at Falkirk just to make sure that I'm OK to just treat with paracetamol. She agrees as this does seem to be a pattern with me. When my WBC starts to come back up I get a fever. It happened all the way through my ABVD chemo treatment and now it is happening again. I could really do without this because when I run a temp it completely knackers me out physically and emotionally. I panic that it is some serious infection and that I'm going to have to go into hospital. It is just so trying.
Anyway, I continue to pop pills and feel cool about 16:00 so I take my temp again to get a base for the night.
Bollocks. I'll try the other ear.
Ho Hum. I drag my bum out of bed, wash down, pack my begs and head downstairs to break the news to Veronica that I'd better call it in to oncology. She obviously sees the blind panic and tells me to calm down and reminds me that this is "just my thing - you feel fine. Sit down for 10minutes and take it again". So I do and it drops to 37.9C. Another 10minutes later and it i 37.4C. Panic over but Veronica nips out to the shop to get me Ibuprofen. That way I can take two lots of drugs to keep the thing under control as you can mix Ibuprofen with paracetamol.
I sleep all night and wake up temperature free. Woo hoo!

So onto today and nothing to report. The girls had a play-date in the village this morning and then Veronica took them to see an old friend out in Hamilton so I had the house to myself and achieved nothing!
It was a good, calm day! May I have a few more before chemo restarts on the 11th April.

Monday, April 02, 2007

Things are finally back to normal here.
My mood swings have gone and I'm back to my usual calm persona.... thank God. Unfortunately it has returned a day too late as I single-handedly managed to ruin what was supposed to be a nice family dayout to the park by being a moody, miserable, surly git! Chalk up another one I need to add to the payback list. Erin was placated with '99 ice-cream and 'Becca with cuddles but it is another one to add to the Veronica list.

Today we went to see my Oncologist to just have a general chat about the way ahead and to get some blood work done. I think it was mainly to make sure I'm not neutropenic. Bloods came back OK so no need for G-CSF growth factors this time round. Woo Hoo! Those jabs really hurt my back and a couple more weeks without them means more rest and relief for me.
We talked about the transplant and about where it would take place. I asked about having it in Dundee and, although he would be happy for me to choose that location, he would much prefer it to take place in Glasgow as that is where the experts and field leaders in Scotland are based. He explained that Dundee doesn't carry out the procedure often and so we decided to stick with Glasgow. It's not all too bad though as I've learnt that it should take place in the Royal and that is a damn site easier for people to get to than Gartnavel.
We were also told that you get "scaled" when you go for a SCT transplant. The scale runs from 0 through 4 and the great news is that I am ZERO! I'm not 100% sure what this actually means but I guess it means my prognosis is better than someone on a 4 and that my recovery time will be quick. My onc also hopes to have me out of hospital in 18 - 21 days... the good news just kept on coming.

I got me XBOX 360 back today and had a wee shot. I've become strangely addicted to cricket since I've been resting (the Ireland victory over Pakistan has probably helped) and the Brian Lara game is pretty damn good. I can see it getting hit pretty heavy after my next vacation at Stirling Royal and then it will be time for LOTRO.

Oh yeah. I really really want a KFC. The craving is in insatiable. If I don't get one tomorrow there will be issues.