Wednesday 30 September 2009

Same old, same old ...Cycle 4, Day 9

Steve has now done the 10m sprint between bathroom and bedroom for the third day in a row. Today, it happened at 5.45 am - rather earlier than usual.  We're a bit bleary-eyed as a result.  Methinks we will both need an early night tonight.

We are trying to stay positive.  However, if truth be told, the same old routine of hospital visits and trying to manage the side effects of chemo are making us feel fed up at the moment.  If we could be certain that the treatment is working, it would make it all worth while.  However, to find that out, we'll have to hang on in there until 13 October, when Steve will get the results of the assessment at the end of Cycle 4. Keep your fingers crossed for us.

One more dose of Velcade on Friday then a rest from treatment for a whole week (even though we'll be back in hospital for a scan and X-ray).  Let's hope the side effects of the chemo wear off in the week off.

Tuesday 29 September 2009

The 10m sprint and a window to the future? ... Cycle 4, Day 8

For the second day in a row, Steve woke up feeling fine. Then, without any pre-warning of nausea, he had to do the 10m sprint from bedroom to bathroom, where he was a little sick (but not a lot, thank goodness). For a man assessed as 100% disabled, he can move swiftly when needs be! Also a very effective way of getting up quickly.....

Our hearts sank a little when we arrived at hospital to hear that, once again, the haematology lab's equipment wasn't working so all blood samples were being courriered to another hospital for testing, which naturally takes longer. Rather than hang around on the ward after all the other obs were done, Steve had an early lunch and, afterwards, we went out for a walk in the sunshine.

Our ramble was cut short when Steve thought he might have dropped his keys, so we re-traced our steps, eyes on the ground, only to find them safe in the pocket of his jacket which he had left on the ward.  Ah!  One of those senior moments....However, the walk in the fresh air woke us up a bit, and I managed to do some work before we had the all clear for treatment.  It didn't take long for the Velcade to be administered, and we were back home some five hours after leaving - not bad for a "short" chemo day.

On the way home, we discussed the young man being treated in the next bay to us, on the ward.  Although only in his mid-thirties, he appeared to be in a much worse condition than Steve - coughing from time to time, taking pain relief, connected up to the oxygen supply, using a stick to help him stand up and a wheelchair to go any distance.  It seems that he had been diagnosed with cancer in mid-August and the chemo wasn't working (so far, at least).  

There was a long, lively discussion with the Occupational Therapy nurses about how to manage breathlessness by changing posture and sitting in front of a fan; aids to make life easier at home; bits of equipment kept appearing and the whole thing seemed very positive.  We were both struck by how well he and his partner appeared to be dealing with such a very distressing situation (and mum and sister who arrived while all this was going on).  It made us appreciate how lucky we are (relatively speaking).  I only hope that if (or should I say when?) Steve is affected in that way, we are able to deal with it likewise.

Steve is now in the final chemo countdown, assuming his remaining treatment goes to plan.  So, in the great tradition of news programmes, I thought I should end this blog with the sports results.  If you don't want to know the scores as of today, look away now.

       Cisplatin:        4 down, 2 to go
        Velcade:        16 down, 9 to go
        Cycles:          3 down, 1 in progress, 2 to go
        Steve v Leo:  1st test stable; 2nd test starts
                           6th October

Sunday 27 September 2009

That sinking feeling and bad taste ...Cycle 4, Days 5 and 6

There is no doubt now that some of the side effects of chemo (fatigue and nausea) are cumulative, whilst the steroid anti-sickness tablets which Steve takes at the start of each cycle seem to make him feel a bit "edgy" (can't think how else to describe it) for some time afterwards.  

Another problem is a strong taste that remains in his mouth long after he has eaten.  Rather than getting rid of the taste, mouth rinsing and teeth brushing simply add a mint-flavoured layer. We haven't figured out a way of dealing with this. I wonder if the lingering bad taste could be one reason why people on chemo sometimes resort to bland food?

The combined side effects of chemotherapy meant that Steve did not feel so good on Saturday. To make matters worse, I woke up with that sinking feeling that I might have developed an infection - slight cough, husky voice and temperature slightly raised.

Due to this less-than-wonderful start to the weekend, I ended up spending a large chunk of the day trying to keep my distance from Steve in the hope that he wouldn't catch my infection, and we missed Tanya and Diego's party, which I'm sure was superb on such a wonderful sunny day.  

The good news is that things had improved a little by this morning. Steve felt better for his early night. Although the bad taste was still there (in his mouth - in all other respects, his taste is very good...) there was no need for an early morning antiemetic tablet.  Plus, my infection hadn't worsened overnight and Steve shows no sign of coming down with it so far. We have made the most of the fine weather with a longish walk along the river to Port Meadow then home via the canal, so the latter part of the weekend was on a higher note than the beginning.  

Must remember that peaks and troughs are par for the course.  I think we're lucky we have many more good days than bad.  I hope its the other way round for Leo.   

Friday 25 September 2009

Flying solo, bouquets and best wishes.. ...Cycle 4 Day 4

Steve was a big boy today.  He went to hospital all on his own for the second Velcade dose of this cycle, as I had to go to London for a work-related meeting. I'm pleased to report there were no major hiccups this time, just a short wait for a bed on arrival. After the usual couple of hours waiting for the blood test results to come back, Steve was cleared for treatment and was back at home before me.  That's about as smooth as it gets. Perhaps I should leave him to fly solo more often!

Our love and best wishes go out to my cousin Maureen and her husband John, who finished a course of radiotherapy this week. Have a lovely, well deserved break.  We'll catch up with you on your return, all relaxed and recuperated. Also to Debbie in Plymouth, who has had a difficult time recently - enjoy your trip to Jersey, you deserve it! 

Whilst I'm giving out bouquets and best wishes, I would also like to say thank you to my employer and work friends for the sympathy and understanding everyone has shown me over the last few months, both in and out of "the office". Very, very much appreciated. Thanks also to all those who took part in the World's Biggest Coffee Morning organized by Macmillan Cancer Support to raise money for people affected by cancer.  I hope the cakes in Temple Quay House, Bristol went down well!

Last but not least, tomorrow 25 September is Mesothelioma Awareness Day, in the USA which aims to raise the profile of this cancer through a radio campaign and a campaign to make Mesothelioma Awareness Day official in cities and states across America.  Good luck to all involved.  The equivalent in the UK is Action Mesothelioma Day in February. We'll have to think about how we can get involved next year......any ideas, anyone?  

That's all folks. Dry your eyes and put away the hankie, the awards ceremony is over - for now, anyway!

Wednesday 23 September 2009

It's up! Cycle 4, Day 2

Euston tube station
Northern Line (City branch)
Platform 6 Southbound 

Need I say more?

For more information see blog
"Going Underground"
28 August 2009

Tuesday 22 September 2009

Hiccups Cycle 4, Day 1

It's been a day of hiccups:
  • Steve couldn't find his keys (car, house, garage, cases et al) this morning, even after a quick look round the house - luckily we have spares, so could drive to the hospital for the long chemo day
  • We started out later than planned and were then caught up in horrendous traffic congestion on the way to the hospital, arriving about half an hour late (found out later the eastern ring road had been closed due to an accident which took out the traffic lights - everything was diverted through town, which was why all the radial roads were chockablock)
  • Others were late arriving at hospital, including the receptionist who inadvertently booked Steve in as a "visitor from abroad" in her rush to catch up (later picked up and corrected)
  • The catering order for lunch and tea had already been filled in by someone else by the time we arrived, so Steve had no idea what he would be eating later in the day..not quite what he would have chosen...
  • A small cannula was used rather than the larger one usually inserted, so the first dose of saline was set up at half speed and took two hours to be delivered rather the usual one hour (consequently we were getting twitchy about the Velcade going past its sell by date....)
  • The last dose of saline was also set up for two hours instead of one (but that was changed quickly, once we pointed it out to the nurses)
  • The final dose of glucose went through at the specified speed, but the pump kept playing up as it was too much for a small cannula to handle (we ended up re-setting the machine ourselves, rather than calling for the nurse to do it every few minutes - otherwise we would still be there....)
  • The car parking ticket was faulty and wouldn't let us pay to get out of the hospital car park
Nothing major, but a severe dose of small hiccups today, as you can see...

On the bright side, all the tests were clear, so Steve is still on track with his treatment, and his weight is slowly going up, which is good (probably something to do with Colin's lovely meals over the weekend). The attendant let us out of the hospital car park without paying when he heard about the faulty ticket. There was one space left to park on street when we arrived home - a miracle! We found the missing bunch of car/house keys in the recycling bin (don't ask how/why....)

So, it's been quite an obstacle course, one way or another.....but we finally managed to get through the dreaded long chemo day in one piece.  Four long chemo days down.  Two to go.  Got to be good news...

Monday 21 September 2009

Reality check ...Cycle 3, day 21

The joys of the past weekend and a visit from Murray this evening which helped take our mind off things are now being crowded out by thoughts of going back to hospital tomorrow to start Cycle 4 of chemotherapy.  

As the side effects of chemo seem to be getting more noticeable and lasting longer with each cycle, the thought of resuming treatment does not fill us with enthusiasm.  Plus, it will be a long, hard, and probably very boring day tomorrow with both Cisplatin and Velcade due to be given, assuming of course that all the tests come back clear.  Must remember to pack the bag with plenty of reading material..

If the chemo is having a positive effect, that would make it all worth while.  However, we won't know that until the end of cycle 4.  Very frustrating....

As you can probably tell, we're not exactly jumping for joy tonight.  However, I'm hoping we'll feel a bit more positive by the end of tomorrow when the long chemo day of this cycle will be behind us.


Sunday 20 September 2009

Recipe for Revival... Cycle 3, Days 18, 19, 20

Start with a good journey to Chichester and fine weather (cutting out the slow moving traffic on the motorway following an earlier accident).  Then take two excellent hosts, wonderful food and wine, lots of news to catch up on, and very comfortable accommodation within walking distance of the event venue.  Mix well and leave to marinade overnight.

The following morning, put on your glad rags and get in character for the day. Add dozens of vintage and classic cars and motorbikes in all sizes, shapes and colours, parading and racing round the circuit, with good views of the action from a choice of grandstand seats.  

Stir in some nice surprises, including bumping into the neighbours from next-door-but one from home, and the chance to wave at Stirling Moss, driving laps of honour to celebrate his 80th birthday. 

Simmer gently over a pint of beer whilst watching the passing parade of people dressed up in the costumes of the 40s, 50s and 60s at ground level, and the historic planes overhead.  Follow up with a lie-in the next day, a Sunday morning stroll, a very pleasant lunch out and a safe journey home.

What do you have?  The recipe for a perfect trip away visiting friends and enjoying yourself at the "Goodwood Revival" meeting. Best served on a warm September weekend, at the end of a rest week in the chemo cycle.

It was a long day at the races, however, Steve managed to pace himself well and keep going. Although he felt tired and nauseous from time to time, taking rests and antiemetic tablets as and when necessary seemed to do the trick.  

Thanks Anne and Colin for helping us to celebrate Steve reaching the half way stage in his chemotherapy in such good style!  

Friday 18 September 2009

Fashionistas go forth ...Cycle 3, Day 17

Picture this (and try to keep a straight face!):

Steve will be wearing a dark blue polo shirt tucked into high-waisted trousers, with turn-ups and creases, topped off by a smart sports jacket.  A spotted cravat tucked into the neckline and a pale silk hankie peeping cheekily out of the top pocket, along with brown brogues, a canvas "game-keepers" bag and sunglasses with metal frames will complete this vision of male fashion from the 1950s.

I will be harking back to the early 1960s in a very vaguely Quant/Courrege inspired ensemble, with 50s undertones: black top; white linen trousers with a polka dot silk scarf as a belt; a black and white polka dot, belted coat dress with three quarter length sleeves; white peep-toe sandals; black straw "bucket" bag, white sunglasses and a chunky 3 string pearl necklace with matching bracelet.  

Have we gone mad?  Probably!  (I can almost hear Katie and Jack groaning in embarrassment).  However, we will be joining others looking equally daft in 40s, 50s and 60s outfits at the Goodwood Revival event this weekend, to watch cars and bikes from those eras race around the circuit and to take lots of photos.  And if we wear our dark glasses, no one will recognize us......

It's also an opportunity to get-together at long last with Anne and Colin in Chichester and catch up on their news, having missed each other earlier in the year due to the risk of passing on swine flu.

It will be a long and exhausting day, so Steve will have to pace himself (so will I, for that matter).  However, with plenty of refueling/resting stops, an emergency supply of antiemetic tablets and staying with sympathetic, sensitive hosts, we should OK.  It's certainly a great way to make the most of this end-of-cycle weekend, before chemo is scheduled to re-start next week.

The only annoying thing is that we will miss Jan's very special birthday party. Have a lovely day, Jan - hope to catch up with you soon!

Wednesday 16 September 2009

Three months and a lifetime Cycle 3, Day 15

Time is elastic. It's three months to the day since Steve was diagnosed with mesothelioma - not a long time in terms of hours and days, but for us it feels like a life time.  So, where are we in this new era?

The treatment
Steve is halfway through his course of six cycles of chemotherapy on the Cisplatin/Velcade drug trail.  The review at the end of Cycle 2 showed Leo the tumour to be stable - not larger, but not significantly smaller either.  The next review will be at the end of Cycle 4 in early October.  If all goes to plan, treatment will be completed by late November.  However, we know from experience that things do not always go to plan, so we shall see...

The body
Although Steve had lost weight prior to diagnosis, he's regained some and has remained stable since chemo started.  He has no pain, although is sometimes aware of his chest - the chemo working we hope, rather than Leo flexing his muscles.  Steve's breathing is good - he can get a little breathless after major exertion (walking a long distance, or fast, or on steep gradients) but not enough to stop him being active. 

He has not needed to take advantage of the mobility support facilities at the places we have visited over the last few months. In fact, when requested, he recently gave up his "priority" seat on a bus to a large lady with obvious walking difficulties.  You can't tell simply by looking at him that he has a terminal illness.  However, it has made us more aware of how deceptive appearances can be (you really can't tell what's going on inside)

The side effects of chemo - primarily fatigue and nausea - are not pleasant and do impact on us quite noticeably during the fortnight when Steve receives treatment.  Things ease off a little in the third week of the 21 day cycle, so that's when we are at our most sociable.  Apologies if that means we haven't got round to seeing you yet.  We will.

Mind and emotions
The overwhelming feelings of anger, grief, fear and helplessness we felt initially on diagnosis are still there and surface from time to time.  But these feelings are now overlaid by a determination to be positive, stay active and make the most of things.  

The regime of frequent hospital visits is a double-edged sword - on the one hand, we are often frustrated by the both the time taken up and the side effects of the chemo, which impact on what we can do whilst treatment is in progress.  On the other hand, it's reassuring to know that action is being taken which should help improve Steve's quality of life and life expectancy compared to what he could expect with no treatment.  

That said, in "rest" weeks when there are no hospital visits and the side effects of chemo reduce, the fact that Steve has an incurable cancer can feel almost unreal.  At such times, I occasionally wonder whether the diagnosis was correct - then quickly put such thoughts out of my mind as wishful thinking, which won't help either of us.

I know that Steve's experience may not be typical, but after the initial slog of filling in forms, we have both been favourably impressed by the speed with which allowances and financial benefits have been put in place.  It is also reassuring to know that other financial and related help is available if/when we need it. Let's hope that time is a long way off...

Although hospital visits have not always gone off without a hitch, Steve's medical team is great.  Friendly, patient, ready to answer our questions and informative.  

The support given by family and friends, as well as people we have come into contact with through the blog or other websites have been wonderful.  I really don't know what we would have done without you.  Thank you, again and again.

Random thoughts about the future 
When I started the blog, I couldn't think about the future - it was just a gaping black hole of nothingness, a pit of unfulfilled dreams and an overwhelming sense of loss of things that might have been.  

However, I find myself looking forward now - not at the far distant horizon, but to things in the foreseeable future: what we might do in Steve's next "rest week"; the results of the next treatment review; enjoying the autumn; social events we have been invited to; the end of chemotherapy later this year; Christmas 2009 and the new year 2010, when I will adjust the work-life balance so we can spend more time together to enjoy the little things as well as the more important occasions, including Steve's birthday and Jack's half marathon in March, and our anniversary and Katie's 21st birthday in May.  

In the meantime, it's not always easy to be positive. However, we try never to give up hope and to make the most of each day, like many others trying to do the same.  

If you have a spare 8-9 minutes, please watch the You Tube video 
Mesothelioma:  The human face of an asbestos epidemic (link top right).  
But take a deep breath first.  
Then spread the word.  
Thank you.

Tuesday 15 September 2009

Oh, I do like to be beside the seaside .........Cycle 3, Day 15

Steve reminded me this morning that it's been five long weeks since we had a Tuesday free of hospital visits. To make the most of this rare event, we were back on the road again today to resume our tour of NT properties within striking distance of home.

Today we visited Tyntesfield - a Victorian country house and estate in Somerset where you can witness the restoration in progress, including climbing up to roof level on scaffold stairs. Spectacular! Decided that we must go back to see the finished works in 2012 - another target, Steve!

On the way home, we called into Bristol to deliver a (belated) birthday present to Jack, via a short detour to Clevedon - our first visit to the British coast this year. No brass band to greet us, but a bandstand, a prom and a little gem of a grade I listed pier, swathed in sunlight as the clouds cleared. Not to mention a very friendly group of locals taking their daily dip in the Bristol channel! Oh, I do like to be beside the seaside....

We indulged in cakes with our morning coffee and afternoon tea to help Steve stave off nausea.  Not quite the protein-rich diet we are trying to aim for (sorry, Maralyn!) However, we decided to treat ourselves on this rather extraordinary Tuesday, bearing in mind that this time next week we'll be back on our heads with another very LONG day at hospital.  

Tomorrow is another milestone - three months since diagnosis. How's it been for us?  Watch this space.....

Sunday 13 September 2009

Another milestone and more open doors ...........Cycle 3, Day 13

Another milestone - a family history event this time. Twenty eight years ago today we became parents for the first time when our son decided to arrive some three weeks before his due by date, catching us completely off guard. The family joke is that we still haven't caught up those three weeks. Happy birthday, Jack!

This afternoon, having eventually delivered Sarah safely to her train, we pushed open some more doors in Oxford, with a tour of the Centre for Islamic Studies (a work in progress but still impressive) and All Souls College, with its most amazing chapel. Tea and cakes in the cafe vaults of St Mary the Virgin, a stone's throw away in Radcliffe Square, staved off nausea.  

Steve used his bus pass for the first time today.  For the first time in ages, he also managed to get through a whole day without an antiemetic tablet.  Little nausea (if any) bodes well for the coming week when he has a rest from chemo and I take another break from work to make the most of it.

A good weekend and a week to look forward to....

Saturday 12 September 2009

A milestone and Open Doors ......Cycle 3, Days 11 and 12

Steve was a big boy yesterday and went to hospital all on his own, as I had to stay at home to sort out some work matters.  We kept in touch by phone, so that I knew when he had arrived safely and when his bloods and obs had been done.  I heaved a huge sigh of relief when he rang to say that he'd been cleared for treatment, and another when he let me know he was on his way home again.  

Yesterday's dose of Velcade was No. 12 out of a total 24 in the full six cycles of treatment.  He's halfway there!  A milestone passed on the "fighting Leo" journey.

We celebrated last night with Sarah who is visiting for the weekend, and spent a relaxed evening together catching up mutual news over good meal and wine, and probably a few too many nightcaps.  However, that didn't stop us rising and shining with the sun and heading off into town this morning to poke around in places that are not normally accessible to the public, as part of the Oxford Open Doors event.  

Some six hours later, we had visited to St Thomas church; toured the Said Business School; wandered round St John's College; dropped into the Bodleian Library to see the newest gargoyles based on designs by local children, and the chapel of Harris Manchester College to look at the fine carvings and stained glass windows by Edward Burne-Jones and William Morris. Sustained by a picnic half way round, we even managed a bit of shopping on the way home.  And the weather has been fantastic!

We were all a bit tired and foot sore by the time we arrived back home, but it was worth the effort.  Steve is taking a nap as I write, Sarah catching up with today's newspapers and I can hear a hot air balloon being inflated in the park at the end of the street. Time to get the camera out to take some pictures in the fast approaching golden hour, before thinking about tonight's meal and settling down for the last night of the Proms.  

What a lovely day.

Tuesday 8 September 2009

A getting-better kind of day ....Cycle 3, Day 8

Not the best of starts at 6 a.m. this morning; Steve scrabbling for an anti-nausea tablet followed by a dash to the lavatory (false alarm) and the same again an hour later (slightly sick this time).  

For various reasons, we weren't looking forward to today's hospital visit: it would be a roundabout trip as the city centre is closed to traffic for St Giles Fair; Charlie is on leave and we don't know who will look after Steve in her absence, and just how practical would it be for me to work on the ward? Plus, the weather was grey and overcast reflecting our mood, made worse by the queues of cars hunting for non-existent parking spaces when we arrived (the signs lie!).

However, there was a room waiting for Steve when we reached the ward. Nurse Kate soon did Steve's obs and took his blood samples for testing, having managed to find a vein quickly. Steve read the paper and did crosswords whilst waiting for the results, and I was pleasantly surprised at how much work I could get through in four hours or so, with few interruptions or distractions.

A bit of wobble when one of the nurses popped her head round the door to say that the blood test results were back, but some were outside the "parameters" - would treatment be put on hold again and all this waiting be for nothing?  Then the good news that the key results were fine and Steve was clear for treatment.

A short while later, Velcade administered, we walked back to the car under a blue sky and a bright sun, enjoying the warmth and fresh air, and feeling almost light-hearted.  There was even a parking space left in the street when we arrived home; no work phone messages and only three e-mails.  All in all, a getting better kind of day.  

Just one more dose of Velcade at the end of the week, followed by 10 days "rest", then Steve will be half way through the planned six cycles of chemotherapy - something to celebrate!  

There will be another X-ray and CT scan at the end of Cycle 4 to assess the effectiveness of the continuing treatment.  Cancer cells are supposed to be more sensitive to Velcade than normal cells. With that in mind, I'm hoping that the side effects that Steve is experiencing are nothing compared to the impact the chemo is having on Leo.  I hope it's not wishful thinking on my part - wish I had X-rays specs to see what's going on inside....

Monday 7 September 2009


If you are wondering about the weird title of today's blog, please click on the header and read "My story".

Jack will be taking part in the 2010 Bath Half Marathon to raise money for Cancer Research UK, who sponsor the hospital ward where Steve has his chemotherapy. Please support him. His target is very modest - he'll reach it easily if he can raise around £6 per mile. That's equivalent to three people each giving up just one pint of beer to sponsor him for every one of the 13.1 miles he'll be running.

If that thought brings on the DTs or if money is tight, please put the date on next year's calender and in your diary NOW so you don't forget and come to Bath (if you can) to cheer him on and give him moral support instead!

Start time 11 am on 7 March 2010.

Course details and other information on

Cancer research brings hope that one day a cure will be found for mesothelioma and other incurable cancers, as well as more effective treatment for other types of cancers.

Thank you, thank you, thank you for your support

Sunday 6 September 2009

Sleeping Beauty ......Cycle 3, Days 5 and 6

The build up of side effects after Friday's chemo kicked in with a vengeance on Saturday. Steve had to dose himself regularly with the anti-nausea pills and had a long nap on Saturday afternoon. He managed to stay wake long enough to join in the family meal with Katie and George early in the evening, but was in bed well before 9 p.m.

I'd like to say that I woke him with a kiss this morning, like a role-reversal sleeping beauty, but the reality was more mundane. After a late night myself, I completely forgot to make ready the tray for our morning coffee in bed, so we had to get up for our caffeine fix. Probably a good thing in retrospect, as Steve was sick soon after (and as everyone else was fine, I don't think that my chicken tikka masala from last night was to blame.....)

The good news is that whilst he hasn't felt brilliant today, Steve managed to stay awake for most of it - just dozed off for a bit in front of the cricket - so was able to enjoy Katie and George's last few hours at home before seeing them off on their way back to Yorkshire.

I dive back into work tomorrow. It will be interesting to see if the brain still works, and how long it takes to go through my office e-mail. Must try not to have nightmares...

After all, tomorrow is another day
Gone with the Wind

Friday 4 September 2009

S-L-O-W, S-L-O-W, quick, quick, S-L-O-W .............Cycle 3, Day 4

Last night was fun - Katie and George prepared the evening meal: bruschetta for starters and spaghetti carbonara for the main course. Jolly tasty it was too!

Back to hospital today for a Velcade top-up. This is usually referred to as the "short chemo day". It should be re-named S-L-O-W day.

Question: What do you do in hospital when you have read the newspaper, discover that you have forgotten to swap out the book that you finished on your last visit for something new to read, and are bored looking at old magazines from 2007 and 2008?

Answer: Do some primary research into how to waste a day in hospital by logging events until you get home...

If you don't want tedium ad nauseum, look away now - otherwise, read on (these are the edited highlights ; I've left out the really boring bits...)

Leave home.

Arrive at hospital for 11 am appointment; buy newspaper.

Shown into the room to be used for today's single shot of Velcade which takes 3-5 seconds to administer, once the "all clear" is given.

Charlie arrives and takes blood samples for testing; explains that they are short-staffed, so someone else will be along to do the rest of Steve's obs. All being well, blood test results should be back around 13:00.

Charlie pops back to say the lab's equipment isn't working. Samples will have to be couriered to another hospital for analysis. The results should be back around 14:00, so order lunch...

Lunch arrives.
Nothing happens for two hours, then several things happen in quick succession.

Charlie brings news that half the tests results are back; white blood cell count is fine - we breathe a sigh of relief.

Afternoon tea and biscuits arrive.

Another nurse, Viola, arrives to do Steve's obs (weight, temperature, blood pressure, blood gasses - all fine). Steve eventually gets to drink his rapidly cooling tea.
A different nurse, Kelly, introduces herself and asks us what's happening? We explain that we are waiting for Velcade to be given, once the final blood tests results are cleared.

Nothing happens for the best part of an hour

It's over four hours since the blood samples were taken but, at long last, Charlie appears fleetingly at the door, gives us the thumbs up and says "all go!" We await treatment in eager anticipation - not long now!

Nothing happens for the next 50 minutes - we are getting twitchy: the Velcade will be time-expired in about an hour.

16: 15
After checking with Charlie on the phone about how to administer the trial drug which is new to her, Kelly arrives with the Velcade. Rather than use a quick saline "flush" before and after chemo (which is what usually happens) she sets up a saline drip for 5 minutes, administers the chemo for another minute (rather than the normal 3-5 seconds) re-starts the saline drip for another five minutes and disappears.

16: 25
Kelly returns, dismantles the drip and removes the cannula.

Escape - at long last!

Arrive home nearly seven hours after setting out for this "short" chemo session; not a single parking space left in the street but, all being well, the wardens will have knocked off for the weekend, and we take a chance and park on the double yellow lines....

What a way to waste a day.....

Moan over - I know the staff are doing their best. It's just that time is so precious; days like today - when it slips through your fingers - are very frustrating. Hopefully the weekend will be a bit more productive, creative, and/or sociable, before I have to re-start work on Monday after a long break over the summer.

Thursday 3 September 2009

and so it begins (again) .............Cycle 3, Days 2-3

Although the side effects lasted longer in the second cycle of treatment than the first, by the end of three weeks "off" chemo Steve's energy levels were good and he hadn't needed to take an anti-nausea tablet for a while.

However, following the Cisplatin and Velcade treatment on Tuesday, the side effects are kicking in, and so it begins (again)....

...fatigue - interrupted sleep, the increasing need for afternoon naps, early nights (and the risk of dozing off in front of the TV and missing the end of the programme - or loosing the plot!)

...nausea - the need to eat little and often, and not go anywhere without the antiemetic tablets and a biscuit or two for emergencies

...a different schedule - we're back marching to the beat of the 21 day chemo cycle but now knowing that it can be easily disrupted by things outside our control

However, although some lifestyle adjustments will be needed now that chemo has re-started, we won't let it bring our world to a grinding halt in the coming months. Time to make the most of the next few days whilst Katie and George are visiting, and to look forward to other things in the pipeline. So, we'll just have to:

Work like a soul inspired,
Till the battle of the day is won.
You may be sick and tired,
But you'll be a man, my son

Nothing's impossible I have found,
For when my chin is on the ground,
I pick myself up,
Dust myself off,
Start All over again

Swing Time 1936
Lyrics: Dorothy Fields / Music: Jerome Kern

Tuesday 1 September 2009

Back on track but oh, so S-L-O-W .....Cycle 3 Day 1

Back to hospital this morning, after Steve's treatment being put "on hold" for a second week. We had to wait more than three hours for the blood test results, but eventually news came back after lunch that Steve's white cell count is above the level required by the drug trial, so all systems go for Cycle 3 of chemotherapy. From now on, Steve will receive a slightly reduced dose of Velcade, which should not compromise his immune system to the same degree and will minimize the risk of future treatment being put on hold.

However, the treatment did not start until well after midday, so it was a VERY long day at hospital with both Cisplatin and Velcade, saline, glucose and Manitol diuretic being administered, as well as all the usual tests and obs. We both felt shattered by the time we arrived home after 9 p.m. more than 12 hours after setting out this morning. Amazing how doing very little, other than reading newspapers/books and talking, can be so tiring (not to say boring).

Nevertheless, it feels good to be back on track and doing something positive again.