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.

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!

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.

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.

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!

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!

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.

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.

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.

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!

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.

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%

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

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 ; - )

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

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