Time for the (R-)CHOP

Right then. Here we go.
Maybe.

Have I mentioned my cough?
Well it's still going strong and as well as that, my temperature is up a good bit today. And I feel lousier than ever.
Dr Farquharson was keen that the chemo should start today but you're supposed to be infection free before you get it. Having cancer seems to be ok - you get it then!
The nursing staff can't get in touch with Dr F to find out whether or not to proceed. As time moseys by, my 5 o'clock discharge looks more and more unlikely.
Eventually, Dr F comes by sometime in the mid afternoon and she says GO GO GO! ! The quicker we get started, the quicker everything will be fixed. She also explained that as I had been (still am) quite ill, it would be better if I stayed in Ward 8 at least until Monday so that they can keep an eye out for any adverse reactions. Oh well, c'est la vie!

So, at 16.30 on Friday, 30th January 2009 I start gettng chemotherapy.
That's what people with cancer get. That's what I'm getting.
I told you I was ill.

I get the pre-meds, the drip with the 'R' bit goes up and off we go. The 'R' will take about 3 hours this time - it'll be quicker for future doses - and then the Bolus nurse injects the rest.
(Bolus: The injection of a drug (or drugs) in a high quantity (called a bolus) at once).
Liesl's here. We chat and laugh, ask the nurse questions and watch the miracle potions go in to do their stuff.
By 20:30 it's all over. Liesl goes home and I stay lying on my bed. I'd better not move in case I'm sick. Or nauseous. Or prickly all over. Or I might faint. Or I might take a seizure.
Do you think I've had too much information?
After about an hour I think "Sod this - I'm feeling fine" and get up to go to the loo.
Everything's going to be fine.

Settling In

Life in a room with six beds is a bit different to when I was in the wee room on my own. Much less room for all my visitors. But it's fine and the staff are brilliant. Michael's become a great pal and someone to talk to and get things explained by.
The plan has been decided by Dr Farquharson. I'm to have six doses of
R-CHOP chemotherapy - one dose every three weeks. I'll get another CT scan half way through and another at the end. If the nhl hasn't gone by then, I might have to get another two doses. Simple!
R-CHOP is a cocktail of five drugs - R for Rituximab, P for Prednisolone and you can look up the CHO for yourselves by clicking the link above. No tunnels or nuclear fission are involved - the drugs will be injected by syringes through the canula in my arm, except for Rituximab which is done via a drip. Normally, the doses will be given to me in Ward 1 as an out-patient but I'll get the first one here in Ward 8 on Friday.
So, the first dose will be on Friday morning and while chatting to Michael about it he slips in casually that I'll be home by 5 o'clock that day.
Home ! ! ?
I canny go home. I'm no' weel. I've got an illness. A proper illness. Even Iain Munn agrees that you're allowed time off your work when you've got cancer. It's an illness that you have to go into hospital for. I'm in hospital. It's too early to go home. I should be in for weeks shouldn't I?
Well apparently not - but that's great news.
I've still got that cough though. And I still feel lousy.

On The Butcher's Block and Dr F

As it happens, this week The Scotsman was serialising a blog called CancerousCapers by a 19 year old lad called Jamie Ross who had recently been diagnosed with hodgkin's lymphona. (I'm not sure what the difference is between the 'non' and the 'non non' version.) You might hve guessed that I'm playing catch up with my Blog (writing it in June) but once I've got past all of the facts and information, I'm hoping that the tone of it will lighten to be of similar quality to that of Jamie's (with less swearing) because he gave me a lot of inspiration back in deepest darkest January.

Anyway, as promised, early this afternoon, I got transferred from the excellent care of Ward 52 in the GI Unit and Dr Shand, to Ward 8 - the Haematology Unit and my new top man would be a top lady, Dr Farquharson. Again, I'm not too sure why it's haematology and not oncology or even just plain cancer. Doesn't matter, that's where it is and they're going to fix me.

Jamie's blog in the paper that day described the worst seven minutes of his life, when he had to get a bone marrow biopsy. You can imagine my feelings then, when on arrival in Ward 8, after choosing my bed (by the window) I was told that the first thing I would get would be a bone marrow biopsy!
I got settled in to my bed (it's worth reminding anybody who is interested that I was still feeling extremely crap, still coughing for Scotland and had absolutely no energy whatsoever) and put all of my cards up on the shelf. I've been an in-patient for a week now so I've received loads already.

Then they expained that a doc would be along shortly to take the biopsy. There - in the ward - with just the curtain round the bed! What if I wanted to scream out in pain? Or cry? Or swear? Tough! Tough luck that is. Not tough me.
So then she arrived. Very petite, Polish, I think and very nice. She explained that I would get a couple of injections, similar to what you get at the dentist, only in my hip rather than my gum. And if I felt any pain, I was just to say and I would get another couple. Brilliant.
So let's get started. Firstly onto my left side, pull doon my jammy troosers a bit and then she put one of those green sheets with a hole over me. Just like you see on ER. It's starting to feel like a major operation now. And then she started boring and pushing and shoving and pulling and twisting into my hip bone. It felt like she was in about six inches but obviously my hip bone isn't that thick. And then, was it my imagination or was that a gurgling sound of stuff getting sucked out? What is bone marrow anyway? Solid or liquid? Or gunk? I've only seen it at the butchers or in a dog's bone.
Finally she had to nip off couple of bits of the bone itself and this was similar to getting the liver biopsy - the anticipation of the 'bite' is worse than the actual 'bite'. But it wasn't sore, just uncomfortable - I think Jamie had over hyped it a bit and it just goes goes to show that sometimes you can have too much information. There was nothing to fear but fear itself.
I think I could have done with a brandy though!

After recovering from that trauma (ok - I know I'm hyping it up a bit now) I got to meet Dr Farquharson for the first time. If anyone ever doubted that there was a cure for cancer, they haven't met Dr Farquharson. It's not that she has a cure - she is the cure. Bright, breezy, touchy, feely, broad accent and confidence in bucket loads. After chatting to her for a wee while, she was off again, as quick as she had arrived. There was a difference in me though. I now knew the plan and from that moment on I never doubted for a moment that she wouldn't get me better.

Other things were happening too. Support from family and friends was rolling in. Overwhelming support that takes your breath away. Messages and cards. Emails from Shona.
John and Liz and Liesl of course, came in to visit that night and there was laughter and jokes.
And it didn't seem quite so dark.
I was still coughing though.

The Most Important Result

Fortunately, we didn't have to wait too long on Monday morning for the news.
Liesl was in nice and early but we didn't have much to talk about and there wasn't much on the telly.

So in comes Dr Shand. It's impossible to convey how much of an impact whatever he says in the next two minutes will have on my life. Therefore it's good that he says it quickly:
- "You've got non-hodgkin's lymphoma."
(This would normally have capital letters but I think that would show it too much respect that it doesn't deserve - sorry mr hodgkin.)

I've got non-hodgkin's lymphoma - hooray! Phew! Yippee! I think.
It seems such a relief. I don't know why because it's still cancer but somehow over those long four days, I've convinced myself that this is good cancer and I'm not so worried anymore.
Dr Shand explained that the treatment as with most cancers would be chemotherapy.
What is chemotherapy? Sounds sore. Sounds scary (told you I was a woose!). I bet you have to go into one of those tunnel things and nuclear particles will fly all around you and zap everything they don't like. Even if it's things that you like. Like your eyes and hair and insides and the digestive biscuit that you've stashed away in your jammy trooser pooch!
He also said that I would get transferred to the specialist Ward 8 and everything would be explained to me there. Just as well. Obviously.
But as this was the best news that I'd for a week I thought that I might as well start getting better.

Liesl is relieved, the Mums come in and they're relieved. I think that if we had had a bottle of Champagne, we would have opened it.
Obviously, this is strange because I've still got cancer. And at night it's still very quiet. And lonely. And scary. And dark.

The Long Wait

It was a long wait for everybody through the weekend although I was kept quite busy answering emails and text messages on my phone as the news spread among family and friends and messages of support and good wishes came flooding in.
Also, I'd now been in long enough for many cards to have arrived - might have to get one of those strings with the wee pegs that you use to display Christmas cards!

But it was a tough four days. Emotions for everyone ranged through worry, sadness, fear and maybe a touch of anger and it was worse at night.

I tried to take my mind of things by thinking of my favourite views, like the drive into Dirleton down past the pub as the village green opens out and you can see our house! Or looking east to the Bass Rock and Dunbar as you come over the Garleton Hills from Haddington. Or west from Longniddry towards the Forth Bridges on a Summer's night.
But that only introduced another emotion. Panic.
Because I couldn't picture any of them at all. My mind was blank.

And PL had lost by a single point away to East Kilbride.

On a brighter note, 'Fair fa' your honest sonsie face' - it was Burns' Night and The Great Chieftain o' the Puddin' Race was for tea. Braw!

The Day After The Day Before

So where do we go from here?

Well, following a night with not much sleep, the day started off just like all the rest. Rubbish breakfast, blood test and shower. Hey ho - life goes on!

Dr. Shand (GI/Ulcertive Colitis top man) was an early visitor. He had checked on the CT scan result and was very sorry to hear the news. However, he had a theory and more than a glimmer of hope.

Way back in 1990 when I first got UC, I was in hospital for 8 weeks under the expert eye of Professor Anne Ferguson, one of the top bowel and colon experts in the world. Dr Shand ws part of her team. Anyway, after about 6 weeks, although she knew what was wrong with me, I wasn't getting any better. It was time for Plan B. A new drug - Azathioprine - was showing some positive results and she wanted me to try it. So I did, and within two weeks, I started to get better - hooray!

Over the years at the GI Clinic, Dr Shand and I have discussed the long term use of azathioprine and possible side effects (eg bone problems etc.) but for various reasons like me starting a new job a few years ago and not wanting to be ill, I remained on it.

But now he explained his theory. There were basically two possibilities.

1. Cancer. ie. Bad cancer. If I had this, there was little or nothing he could do for me. (His words - clear, concise and to the point again.)

or

2. Lymphoma. There's no such thing as good cancer but if you get a choice, take this one. He explained that this is a possible side effect of the long term use of azathioprine.

He was pretty confident that this is what I would have, so much so that he cancelled a colonoscopy that had been scheduled for me for tomorrow and replaced it with a liver biopsy.

Now, I've had one or two colon biopsies before but I have also had several colonoscopies. For the uninformed, look away now - it basically consists of a camera on a cable which gets shoved up your jacksy!! Four and a half feet (that's 54 inches) up your jacksy!!! AND - as a bonus - you get to watch it all LIVE on the telly. Nice.
I suppose it's just like watching the old Raquel Welch movie 'Fantastic Voyage' except less entertaining because you know it's your own body.
Similarly, 'The Numbskulls' from The Beezer do the same sort of job, as do the wee firemen in the Gaviscon advert - except they go down the safe end rather than up the dangerous end!!

I felt much better following Dr Shand's visit and was grateful for his honesty and confidence.

So then I was whisked off for the biopsy. Now everyone who knows me will know that I'm a bit of a woossy, scaredy cat when it comes to any kind of procedure but actually this one was ok. A bit uncomfortable and the worst bit was when you know that the doc is about to nip off the wee sample. It's a bit like watching Eric Bristow with Dartitis or Bernhard Langer with the Yips! You know it's coming but the final release seems to take forever.

Back on the ward, I had to lie absolutely flat for three hours under the constant watch of the nursing staff. What could possibly happen? I've no idea but I seemed to get through it ok.

After explaining Dr Shand's theory to everyone, all we had to do was wait in hope for the result of the biopsy, which unfortunately would take until Monday to come back.
It was to be the longest four days of my life!
The good thing was that there was a bit of light at the end of what had been a very long and dark tunnel yesterday and the deep gloom had lifted just a bit.

Black Wednesday

The day starts as most days in hospital start. Breakfast (cereal or porridge and a roll & jam) and an extraction of blood that would become an almost daily occurrence for the duration of my stay.
The previous night's chest X-ray had shown nothing untoward so a CT scan had been arranged for later in the morning. I wasn't sure what this entailed - sliding into a long tube on a conveyor belt perhaps?
Actually, you go up to the scanning department (quite nice actually), get about a gallon of stuff to drink. It's sort of aniseed flavour, a bit like the blue or pink liquorice allsorts that are covered in wee hundreds and thousands and you have to drink it over an hour. This isn't that easy when you're feeling lousy, sitting in an uncomfy wheelchair and canny go to the loo! Ah weel, pretend it's pastis and you're sitting in the south of France watching a game of boules. Things could be worse.
Anyway, then it's into the chamber. It's not a tube, just a giant Polo that you slide back and forth through and a robotic voice says "hold your breath" then "breathe easy". The lights whirling round the hoop are quite entertaining. And that's it. Back to the ward having missed lunch (lucky I had my biscuits) and get into the comfort of my electric bed.

Mum came in to visit at 2 o'clock. She was closely followed by one of Dr Shand's docs (he was away for the day). He stood at the end of my bed, looked a bit hesitant and said that he had looked at my CT scan and had the result. All he said was "YOU HAVE A TUMOUR". No frills, no flammery - just the fact.
Now, when I become a doctor, I think I'll break bad news to a patient something like this:
Doc - Hello Mr X - I've got good news and bad news for you.
Mr X - I'll have the good news.
Doc - I've just won £10 on the lottery
Mr X - What's the bad news?
Doc - You've got cancer!

or

Doc - Hello Mr X - I've got good news and bad news for you
Mr X - What's the bad news?
Doc - You've got cancer.
Mr X - What's the good news?
Doc - I've just heard that Preston Lodge RFC have signed Richie McCaw and Dan Carter on 5 year contracts.
(Actually - this would be a pretty good counterbalance except that I'm not sure that they would be too happy about playing in the PL 2nd XV.)

But there's none of that. He just says "You've got a tumour". Clear. Precise. Exact. To the point.
The force of his soft voice and his words are enough to send me reeling back into the bars at the head of my bed. I look at Mum and see that the effect has been the same on her. There's nothing to say, just despair. The Doc is brilliant, as are the staff on the ward. Questions seem pointless but I'm able to ask enough to find out that the tumour is on my liver. Further tests would be required. Any other information isn't required. I can't hear it anyway.
Everybody goes and it's just me and Mum, tears, fears and uncertainty. There's still nothing to say that will comfort either of us. Fortunately, Shelagh was working and as usual was able to come up to the ward, just to be there. As she so often is.
Next problem - how to tell Liesl? There's a small matter that she will be a wee bit later than usual tonight because it's her birthday. Happy birthday indeed! And all I've got her is a wee tube of face cream. Oh aye - and to tell her that I've got cancer. Did I mention that?
So Shelagh and Mum went home. I was on on my own except for the nursing staff, just waiting, crying and being scared. And then Liesl arrived. Happy birthday, then the news and then we were both crying and being scared. Lots of questions but few answers. A liver biopsy was to be arranged for tomorrow and the Staff Nurse did his best to answer anything else.
But there was only one question - why?
And that question's asked by hundreds of folk in the same situation every day. And they don't get a satisfactory answer either.
Hours later, Liesl had to go home. To phone her mum, to tell her the news. To tell friends, family and neighbours. Once she had gone, I felt quite calm. I phoned mum to see how she was. Daft question. At least you get to use your mobile phone in hospital now so you are never cut off. Another call to Liesl before lights out and then it's quiet. The lights are out in Dirleton, Port Seton, Dunfermline and WGH.
And it's really quiet.

Time for Action

Tuesday again and time for the weekly GI clinic. Dr Shand has been kindly fitting me in with an early appointment but it's now quite hard to get up and out to be there in time for 9 am. I'm also finding it harder to drive so Liesl has been taking me to the last couple of appointments but I'm now feeling so sore that every bump in the road zaps right through my body.
When we finally arrive in the car park after battling our way through all of the school run 4x4s, it's a struggle to make the short walk up the hill to the entrance to the clinic. When we meet Gavin from the hockey gang in the shop, it's all I can do but put on a brave face and hold on nonchalantly to the shelves - not in a casual manner but to stop me from falling over.
So this time it was an easy decision for Dr Shand and we were all agreed - admission to hospital was the only option. It would take time for an available bed to be confirmed so I was sent back home and get my stuff and then come back in at 4 pm.
Best to get new pyjamas. And all of the usual washbag suspects. And don't forget my toys - radio, iPod, torch (sometimes it's dark at night when you have to get up and go to the loo), book, Smudge (more of him later), magazines and biscuits! I'm guessing I'll be in for more than a day or two.

The GI ward was quite quiet when we arrived back and I was shown to my room. A private side room with telly - cool.
The bed wasn't made up so while we waited we watched the inauguration of the 44th President of the United States, Barack Obama. A momentous occasion and the start of a new chapter in the brave new western world. History will show if he's any better than any of the rest but he seems like a good guy so let's give him a chance and wait and see. He can't be any worse than the previous incumbent.

So after getting settled in and glad to get into my bed, Liesl went home and I was left waiting and thinking about what might be. At 9 pm my rest was interrupted though. Even at the time of night it seems, it's not too late to get whisked off for another X-ray. Why are hospital corridors so eerie when they're quiet and deserted?

Happy New Year?

Well, 2009 started in much the same way as 2008 had ended. Still feeling pretty rubbish, still attending Dr Shand's GI clinic weekly on a Tuesday, still losing weight, still coughing, still not much energy and still suffering night sweats. The steroids had also run their course and chest X-rays showed nothing untoward so it seemed that we were running out of options.
On a more positive note, I was still working (sometimes from home though) and generally doing everything else I'd normally do. This included going to watch Preston Lodge playing rugby and things weren't going too well at The Pennypit! Relegation is a distinct possibility.