Saturday, 29 August 2009

Man not myth

Having referred twice now to PETAL in the blog, I thought it about time to find out more about the author of this inspirational philosophy for living with mesothelioma. Is he a fictional character, or for real? Someone from history or a contemporary? Based in the UK, or somewhere else in the world?

I am delighted to report that GSB is a real person, very much alive and kicking, and living somewhere at the end of a link to a computer in the UK. He was kind enough to respond to a exploratory e-mail sent on the off-chance that there aren't too many philosphers in the world who share his name. Seven years on, Graham now lives his life now without thinking about mesothelioma - what a wonderful place to be. The PETAL philosophy has clearly been a great success. Please write that book, Graham - others will be inspired your story!

This extended gap between Steve's chemo cycles has give us the chance to get on with life almost as normal, unencumbered by hospital visits, and associated fatigue and nausea. Out and about again today, making the most of the blue skies and sunshine, with a visit to see Stanley Spencer's moving paintings in the Sandham Memorial Chapel en route to another NT property, The Vyne, a 16th century house in Hampshire set in wonderful parkland, with a good walled garden and borders full of butterflies. And that other essential, a tea room! No photography inside the house, but plenty of scope outside.

I say almost as normal, as we seem to be doing more this August than would otherwise be the case. Steve is taking all this exertion and physical activity in his stride. It was me who flopped for a rest when we got home late this afternoon...

More good news on the creative front; some of my images will be exhibited at this year's Art in Woodstock Festival in October, following on nicely from Steve's foray into the underground in September. And we have also been offered an exhibition in the new Nuffield Orthopaedic Centre here in Oxford, June-July 2010. Something to work towards over the winter months...

Friday, 28 August 2009

Going underground

Having mesothelioma doesn't stop Steve creating beautiful artwork; he's exhibited in conventional galleries and online, but now he's going underground....

Title: Tulip Sky

Artist: Stephen Wride

When: 21-23 September for 12-14 days

Where: Euston Tube Station
Northern Line - Platform 6 Southbound (City Branch)

Put the dates in your diary if you live in, or are traveling to, London during that fortnight. I do hope that you can track down Steve's first underground poster and will enjoy looking through the "windows" into the sky from deep down in the tube.

This image will also help brighten any traveler's day, IMHO. Lucky commuters on the northern line!

Thursday, 27 August 2009

Second childhood

The last time we went to Didcot Railway Centre to look at steam trains on GWR, Katie was a toddler and Thomas the Tank Engine was visiting. We paid a return trip today, ostensibly to take photos of the locos and see Tornado in steam. But actually, it was just an excuse to get down and dirty, walk the tracks and play at being engine drivers like a couple of kids...

The second childhood theme recurred later in the afternoon, when we visited Basildon House for a bit of grown up culture, then envied the kids enjoying some sort of treasure hunt/trail, which involved peering into dark corners with torches provided by the NT and posting answers in special boxes, secreted around the grounds. They were having a fantastic time; we were SO tempted to join in...

The sun shone, the home-made cakes were delicious, we had plenty of fresh air and exercise - a good boost to Steve's immune system, fingers crossed!

Wednesday, 26 August 2009

Light at the end of the tunnel

It goes without saying that the internet can be a double-edged sword - some of the information you access in the quest for knowledge on a particular topic tells you things which, in retrospect, you really would prefer not to know. Which is where I found myself at the beginning of the week, after going round and round in online circles. However, it can also bring you into contact with strangers bearing heart-warming news - which is where I find myself today.

One such person is H, whose husband was diagnosed with mesothelioma in November 2006. He has had two courses of chemotherapy; his meso substantially reduced in size following the most recent treatment and they are both now enjoying the summer and life in general, some three years post-diagnosis.

The other is S, whose father was diagnosed with mesothelioma in March. Since completing his course of chemotherapy, he has had nine weeks free of hospital visits and is enjoying his life to the full, by the sound of it!

Hearing about these positive experiences reminds me that there is light at the end of the chemo tunnel, even if it feels like a long way off at the moment and isn't getting any closer whilst Steve's treatment is on hold. However, I know we'll get there eventually, as others have before us. Thanks to H and S for the inspiration to help us along the way.

In the meantime, a certain song keeps popping unbidden into my mind. In normal circumstances, it would make me wince - not my taste at all (with apologies to any fans). But looking out of the window at the wind and rain, it seems rather apt for today's blog. If you hate 60s musicals look away now! Otherwise, wear a smile and start humming....

Gray skies are gonna clear up, put on a happy face;
Brush off the clouds and cheer up, put on a happy face.
Take off the gloomy mask of tragedy, it's not your style;
You'll look so good that you'll be glad ya' decide to smile!
Pick out a pleasant outlook, stick out that noble chin;
Wipe off that "full of doubt" look, slap on a happy grin!
And spread sunshine all over the place. Just put on a happy face!

Lee Adams & Charles Strouse

Tuesday, 25 August 2009

Learning to expect the unexpected

We had hoped that after an extra week's rest from chemo, Steve's immune system would be strong enough to take on another round of treatment today. But to everyone's surprise (including the doctor who remarked how well Steve is looking) whilst the white blood cell count was better than last week, it's still not up to the level required by the drug trial protocol before Velcade can be administered.

So - no treatment today or Friday; try again next week....

Where does that leave us?
  • the revised treatment dates I finally got round to putting on the calendar will have to be updated again (good job they're in pencil this time)
  • plans to do things during future "weeks off" chemo are still on hold (a bit frustrating)
  • the revised earliest date for the end of the treatment is now pushed back to the last week in November
  • I'll need to sort out some clashes between my work commitments and Steve's "new" hospital days
On the bright side
  • all the other tests results were normal
  • Steve's immune system will be fighting fit before the next dose of Velcade is administered
  • we're learning to expect the unexpected, getting better at being flexible and adaptable and making the best of how things turn out
  • there's an unexpected "window of opportunity" to do things now this week is free of hospital visits and the need to allow for post-chemo recovery
Time to have a cup of tea and think about some enjoyable things to do (once the remains of ex-hurricane Bill have passed over us...)

Monday, 24 August 2009

The circle game

...We're captive on the carousel of time
We can't return, we can only look behind
From where we came
And go round and round and round
In the circle game

Joni Mitchel

I promised myself that today I would get on and do things like finish cutting the front hedge, abandoned when the hedge cutter ran out of juice; posting back files from working last week; updating the calendar with next week's blood doning session and Katie's visit home, and revised dates for Steve's treatment which have changed following a week off chemo to help his immune system recover.

But there I got stuck - I couldn't bring myself to write in a whole new set of chemo dates until tomorrow, when we will know for sure that he is clear for treatment. Even then, the new dates will only be pencilled in; although we had treated it almost as a formality before, we now know from recent experience that there's no guarantee that blood tests (or other tests for that matter) will come back "normal."

Those thoughts set me off on yet another foray on the web, looking for the latest news on mesothelioma, trials and treatments, and I've ended up going round and round in circles - at least that's what it feels like. Much of what I've read is horribly depressing in many ways, but mixed with awe and admiration at how meso sufferers and their families deal with the challenge of living with a terminal disease and the physical and emotional pain that entails.

Blogs like throw into relief how lucky we have been so far in some respects - if you can ever say that when you or your loved one is diagnosed with a terminal illness. However, it also fans the memories of anger, grief and helplessness which engulfed us only two months ago, but feels like another lifetime. Not very positive. It's time I stopped playing the circle game and got on with the rest of the things that need doing today. Here we go....

Sunday, 23 August 2009

Good weekend

Yesterday, we had a good day out at Claydon House, famous for its connection to Florence Nightingale, amongst other things (how medicine and the care of the sick has moved on since those times...) and visiting the magical windmill at Brill on the way home.

Today, a trip to Buscot for a lovely long walk around the park and Peto's water garden, and a chance to see the art collection, including works by pre-Raphaelite artists, Burne-Jones and Rossetti (and yes, we have become fans of Desperate Romantics...such good rollicking fun!)

Home in time to see England win the last Test Match and The Ashes. Result! What a great way to finish the weekend....

Oh, it's such a perfect day,
I'm glad I spent it with you.
Oh, such a perfect day,
You just keep me hanging on,
you just keep me hanging on.

Lou Reed

PETAL revisited whilst in limbo

In June, I said that Graham Sherlock Brown's philosophy for living with mesothelioma sounded good to me. Two months on, how are we doing?

P = Positive attitude
We're trying to have a positive attitude and in the main, succeeding. Need to work on having realistic expectations!

E = Eating and exercising well
If anything, I think our diet has improved; Steve has a good appetite, in spite of the nausea. Although not jogging at the moment, he's done a lot of walking and hasn't used his bus pass once

T = Targets
There isn't a list of "10 things to do before I die" (as far as I know). However, Steve has set his long term sights on being one of the 10% who are still alive five years after diagnosis, with milestones along the way like his millionth birthday (in binary) and our 40th wedding anniversary. I know he is aiming to get at least one more distinction from the Royal Photographic Society (RPS), may be two. But the main target is to make the most of every day

A = Adapting to change
We have had to adapt to a new regime based on the 21-day chemo cycle, rather than the standard working week and weekends, and to acknowledge that Steve will need to rest when he feels tired after treatment. There is the morning and evening ritual of rubbing cream into the two circles of skin affected by radiotherapy, which were fading nicely, only to be inflamed recently by the last round of X-Rays/CT scan. And we (try to) never leave the house without anti-nausea tablets and a supply of emergency nibbles....

L = Living your life
We're certainly doing that...out and about whenever possible, visiting family and friends towards the end of each treatment cycle, when not tied into hospital visits or plagued by fatigue. The cameras are being out to good use, as is the NT membership card. Housework takes second place to being sociable and creative (nice to have a good excuse) but the essentials are getting done.

I think we're getting our priorities just about right......

Friday, 21 August 2009

Reasons to be cheerful

What better way to try to pull yourself up after feeling a bit down hearted than to think of reasons to be cheerful. So that's what we've been doing, and here they are:
  1. Leo the tumour has NOT increased in size in nearly three months
  2. The fluid on Steve's right lung has not come back; the pleurodesis has worked
  3. Four more cycles of chemotherapy are bound to be more effective than the two cycles Steve has had already
  4. Steve is feeling well in himself - no pain, no breathlessness - and is staying active (well, almost as active as he was before all this started - I do miss our gentle jogs round West Oxford...time to have another go?)
  5. His hair isn't falling out; no unexplained bruising; no mouth sores; no ringing in the ears more than usual; no tingling in the fingers or toes
  6. With care, he can managed the nausea using a combination of antiemetic tablets and eating little and often
  7. Fatigue is a pain, but so far its not so extreme as to stop us doing the things we really set our hearts on, like visiting family and friends
  8. Steve's appetite is good and he has maintained (and slightly increased) his weight
  9. We are fortunate to have a very excellent support system of family and friends who rally round at the first hint of trouble, and a kind, caring medical team including the receptionist, nursing staff, doctors, consultants and GP
  10. If all else fails, we can always explore chemoembolization in Frankfurt: it's worked for others, including Debbie Brewer (see It's a comfort to have a fall back if this treatment doesn't deliver the desired results
But why speculate about the worst case scenario when there at least 10 good reasons to be cheerful, and probably many more!

Tuesday, 18 August 2009

Back to life, back to reality .......stopped cycling; in limbo

The Fantasy
In the red corner: Steve; Velcade and Cisplatin; the medical team; the family, friends and well wishers support network. In the blue corner, Leo the mesothelioma tumour and a long gestation period. It's got to be a fair fight, no cheating, six rounds, go for it! ....And the winner is Steve, by a knockout in Round 2.

The Reality
Dreams can come true, but our wild hopes that Leo would succumb and shrivel away after two cycles of chemo were a fantasy too far. The reality this morning was more mundane. The tumour has not grown since the first scan on 23 June, eleven weeks ago, and may even have shrunk just a little - although it's difficult to measure, being more like a wispy cobweb that a solid mass. However, there has been no assessment based on the second scan taken just before chemo began on 8 July. Consequently, this morning, the doctor couldn't pin down with absolute confidence any changes directly attributable to the drug trial treatment.

The doctor pointed out (again, as she had at the outset) that chemotherapy is not a cure, but a means of improving the quality of life for people with mesothelioma. The scan results were what she would expect to see after only two cycles of treatment (such assessments are usually made after three cycles). Given that Steve is well in other respects and managing the side effects, she was happy to continue chemotherapy using Velcade.

For reasons it's difficult to explain, neither of us felt overjoyed by the result - in fact, we both felt rather disappointed, deflated and dispirited at the time - we had such high hopes. We really must learn to think positively AND to manage our expectations a bit more realistically.

The Unexpected
Things didn't get any better as the morning drew on. Steve's blood samples (tested on the ward) showed a decline in his white blood cells/platelets - a sign that the chemo is affecting his immune system. The drug trial protocol requires a blood count figure of 1.5, whereas Steve's count came back as 1.3. Because the result was marginal, we agreed to stay on the ward whilst the samples were sent to the haematology lab for more accurate testing. News came back and hour or so later that the result was 1.36, still below the threshold necessary to proceed with treatment today. So that's it. The cycle's brakes are on for the time being. All being well, his blood count will rise with more time off chemo and we'll be back on track to start Cycle 3 next week.

Sadly, we're unable to make the most of this extra week off treatment as I'm committed to going back to work tomorrow for three days. However, the break will give Steve a chance to relax and build up his strength ready for battle to re-commence in a week's time. We just need to go through our diaries and the calendar now and revise the treatment dates. Although it will only extend the overall chemotherapy course by a week, shunting everything back impacts on the timing of future "weeks off" treatment and day visits to the hospital. Thank goodness we haven't made too many plans and I have some flexibility around only a few fixed dates when organizing my working time.

The legal stuff
When we arrived home some five and a half hours later, with nothing to show for it, there was a letter waiting for us from the solicitor advising about a possible claim for compensation. Reading between the lines, it looks like more hard evidence about when, where and how Steve was exposed to asbestos is needed before matters can be taken any further. Steve will have to dig deep into the memory banks, again.....So, if any one out there knows of someone who worked with Steve at PSA in the 1970s, or helped create the open plan studio by knocking down walls on the architect's floor of Oxford Poly in the late 1960s, please get in touch with us (in confidence, if necessary).

The future
Looking back on today's events, I can understand why we have felt a bit down. However, we really should be celebrating the good news that Leo has not grown in the last three months or so, and may even have been knocked back a teeny bit. Extending the overall treatment period by a week isn't the end of the world - certainly not as bad as having to start all over again. It's not as though Steve is in pain, having problems breathing or mobility difficulties. Those who have seen him recently have remarked how well he is looking. Time to go away and count our blessings. Limbo isn't such a bad place to be just for a week.....

Monday, 17 August 2009

Out for lunch ......the end of Cycle 2

Our lovely long weekend was extended today by lunch out with Jon and Sally. Can't think of a better way of finishing Cycle 2 of Steve's treatment and getting us in a positive frame of mind for tomorrow. Thank you!

Sunday, 16 August 2009

Go West ....Cycle 2, Days 18, 19 and 20

To mark (almost) the end of Steve's second cycle of chemo and a whole two months since diagnosis, we decided to follow the advice of the Pet Shop Boys and Go West of home to Bristol, base of some of the wider Family Wride. Sadly, not enough time to queue for the Bansky Exhibition in the Bristol Museum, but lots of meeting, greeting, eating, talking, sleeping, and bit of drinking, some shopping, bird spotting and an unexpected drive in a vintage Jag.

We stayed with our son, Jack, for the weekend, and were well looked after (as always). The three of us had a wonderful meal out at The Thali Cafe on Friday night with Nick (nephew) and Kate (his partner) to celebrate the news of their baby due in early 2010. We visited Steve's mum on Saturday and did a bit of shopping for her. She was delighted to see Steve looking so well, as was Di (ex) sister-in-law, when we called by to see her late on Sunday morning. On the way home, we dropped in on Geoff and Irene in Marshfield, and were treated to home-made cake and a spin in Geoff's 1948 Jag to Biddestone where we watched "ratty" swimming in the village pond and were enthralled by the sight of a kingfisher fishing.

Steve paced himself well over what would have been quite a tiring weekend at the best of times; the frequent doses of food worked wonders at fighting the build-up of side effects from the chemo. All in all, we had a a lovely time catching up with family and friends. It was an excellent way to take our minds off the results of Steve's X-ray and CT scan, which we'll find out on Tuesday. Watch this space...

We continue to be delighted by the phone calls, e-mails and messages of support. We are also touched by those who have taken the trouble to comment on the blog (friends and strangers alike). Many, many thanks for all your good wishes - it really does lift our spirits; I hope that reading this will lift yours too.

Wednesday, 12 August 2009

When you wish upon a star...Cycle 2, Day 17

No chemo this week, but a trip to the hospital this morning for Steve's CT scan and an X-ray to assess the effectiveness of the treatment to date. Joy of joy! No hitches today - a smooth operation from start to finish.

We arrived early for the CT scan appointment in the hope that Steve could be fitted in for the un-timed X-ray beforehand. It turned out to be a good tactic. He was X-rayed within a few minutes of arrival before the queues built up, and in good time for the CT scan, which happened on schedule.

10-15 minutes over coffee in the cafe before leaving hospital, just to make sure there was no adverse reaction to this morning's procedures, then home. Now we wait for the assessment, fingers crossed that all will be well when we get the results next week.

Steve calculates that this is his 3rd CT scan and 7th X-ray since the first exploratory visit to the hospital back in May. It's a wonder he isn't twinkling like a star!

Which reminds me, watch out for the Perseid shooting stars tonight and make a wish for a positive outcome for Steve, if you are lucky enough to see one....

Today's quote is courtesy of Glyn. It seems very apt. Thanks, Glyn!

"Things turn out best for people who make the best of the way things turn out"

John Wooden

Tuesday, 11 August 2009

OBG....OPS.....testing, testing... Cycle 2, Day 16

Today was a test of Steve's stamina...and mine, for that matter.

We walked to the Oxford Botanic Gardens (OBG) this morning fully loaded with all our photographic kit: cameras, lenses, spare batteries and battery pack, monopod, lens cleaning papers and such like and spent a happy couple of hours experimenting with the new telephoto and macro lenses with mixed results, as expected. However, enough good stuff to encourage us to persevere.....

Lunch in town, followed by a bit of shopping for dressing up clothes - things to help us look the part when we go to the Goodwood Revival event in September, trying to dress for the 50s era - then the walk home mid-afternoon, carrying even more than we started out with. But we made it.

Time to catch our breath at home, shower, hair wash, then out again early evening to the private view of the Oxford Photographic Society's (OPS) Annual Exhibition in The Gallery, Oxford Town Hall. Jolly good it was too. Do go if you are down this way - details on this link

It's early evening now and we are both whacked. But Steve has done remarkably well for someone in his condition and passed the test with flying colours. Long may it last!

Monday, 10 August 2009

Paranoia ......Cycle 2 , Day 15

The young man greeted us this afternoon with a smile and a firm handshake each as he invited us to sit down to discuss opening a new account. Seconds later, he cupped his hands over his mouth and gave a nasty, chesty cough, an action he repeated several times in the course of the next few minutes.

Steve and I swapped knowing glances, then Steve diplomatically withdrew to a safe distance whilst I explained that his immune system was compromised due to chemotherapy, and he needed to avoid infections. I felt like adding, why on earth don't you use tissue to catch your germs, not your hands? But ended up holding my tongue for fear of sounding like an old fuss-pot....

Nevertheless, rather than take the leaflet the advisor had been handling, I discretely pulled a fresh one from the rack when he left me alone to check something with a colleague. Sadly, efforts to avoid physical contact with this bug-carrier were to no avail; he shook hands enthusiastically with me when saying goodbye and only just stopped himself doing the same to Steve.

If we come down with a dose of the dreaded swine flu or some other nasty illness in the next few days I shall be very, very annoyed. Or have I just developed a severe case of paranoia? Now where did I put the antiseptic hand gel???

Paranoia strikes deep
Into your life it will creep
It starts when your always afraid
You step out of line, the man come and take you away...

Buffalo Springfield
For What Its Worth

Saturday, 8 August 2009

Good Day Sunshine... Cycle 2, Day 12

We picked up my new monitor from Surbiton this morning and went on to Ham House by the Thames for lunch and to explore. Green parakeets flitted in the trees, the gardens looked great, and the house was fascinating - a 17th century time warp.

The anti-nausea tablets are working, and Steve enjoyed his lunch in the Orangery cafe.

On the return journey, I couldn't help noticing that a large advertising hoarding outside the entrance to Gunnersbury Park which I had dismissed on appeal, had been removed. Result!

All round, it was good day and the sun shone. Cue a song..........

I need to laugh, and when the sun is out
I've got something I can laugh about
I feel good, in a special way
I'm in love and it's a sunny day

The Beatles 1966

Friday, 7 August 2009

Appearances can be deceptive ....Cycle 2, Day 11

Unlike the mayhem of last Friday, the Oncology Ward at the hospital appeared quiet, calm and orderly when we arrived this morning shortly before 11 am. The receptionist greeted Steve by name - he's now one of the regulars - and before long, we were ensconced in a side room ready for the normal round of observations and taking of blood samples that precedes chemo. A "new" nurse, Charlie, has been assigned to look after Steve now that Alana is on maternity leave, although she is not a stranger to us, having helped out on previous occasions.

As everything seemed under control, Steve tempted fate by declining the invitation to order lunch on the assumption that we would be home a couple of hours later. Perhaps, not the best plan with the benefit of hindsight.....Everything seemed to be going well, until Charlie reappeared to say there was a problem. The ward's blood sample testing machine was misbehaving and would not produce a complete set of test results, and the lab machine was also playing up, so Steve's bloods would have to be sent away for testing. We had no option but to sit and look at the papers, do a crossword, a sudoko or two, read a bit more of our respective books and watch the lunch trolley come and go....

By 1.30 p.m. we accepted the inevitable - we were in for the long haul. I was dispatched to buy sandwiches and cookies to keep us going. Eventually Charlie reappeared with good news - all blood test results had come back "normal", so cleared to proceed.

Steve was given a form for an X-ray next week as well as the scan which will be used to help assess what effect the treatment is having. However, Charlie was concerned that the results of the tests might not be back in time to be assessed before the next dose of chemo is due, in which event the rest of Steve's treatment would have to be put on hold.

I think she must have seen the look of panic on our faces - we have just started to make plans around the rest of Steve's 21-day treatment cycles, and all my annual leave and "not-available' time off work has been arranged so that I can be there with him for future sessions. Whilst preparations were made to administer the Velcade, Charlie disappeared and eventually came back with a new appointment a day earlier than originally planned. All being well, this should leave enough time for the results to be assessed before Cycle 3 is due to start. Thank you, Charlie!

We eventually arrived home from today's session some five hours after setting out this morning. Good job we had nothing arranged or urgent jobs planned for this afternoon...

After today's session, Steve is a third of the way through his chemo doses. No treatment next week. Nevertheless, we'll be back at hospital again for the CT scan and X-ray. In the meantime there's a long weekend to look forward to, including a trip to Surrey to pick up a new monitor for me and a visit to Ham House on the way back where we will sample another National Trust tea room and try out our new camera lens.

In case you're wondering why there is an image of a flower at the start of today's blog, our niece Heather thinks that our botanical pictures are far prettier than those of Steve. This is especially for you, Heather and Zac. Enjoy!

Tuesday, 4 August 2009

Getting better; a reunion, a farewell and lost in transit...Cycle 2, Day 8

It seems that whatever was pulling Steve down over the last couple of days has relinquished its grip overnight. After the doom and gloom of the last two days and a good, long sleep, Steve was feeling better when he woke up this morning and has continued to improve as the day has gone on. The anti-nausea tablets are working and he is now eating and drinking. Phew.

Our feeling that things were on the up were given a small boost when a parking space close to the Cancer Care Centre became available just as we arrived at the hospital this morning, avoiding a long trek in the rain from a far-flung car park.

An even nicer surprise was waiting for us on the ward. Steve was allocated one of the single rooms and there, on the wall opposite the bed, was one of my two photographs chosen by the Hospital Trust for the Cancer Care Unit art project. We were tickled pink! And yes, it was positive and uplifting, as per the brief. I hope it has the same effect on others staying in the room for treatment. Perhaps we'll be reunited with the other picture on some future hospital visit.

Today we said our farewells to Alana, the drug trial nurse, who is about to start her maternity leave. Have a happy birth day, Alana. We look forward to news of the new arrival. But before then, there were a few hiccups with treatment.

After a long wait, it transpired that Steve's original blood sample had gone missing in transit somewhere between the ward and the lab, so a second sample had to be taken and cleared before treatment could begin. Whilst waiting, Steve had a saline drip to help boost his rehydration which was below par after the problems of the last two days, so a good use of what would otherwise have been a waste of time.

On the bright side, Steve's blood tests came back normal, so no lasting harm from a couple of days of feeling rough. Those results should have signaled the start of chemo. However, the Velcade was not waiting where it should have been - the driver had forgotten to unload it when he made his delivery, and could not be contacted until he returned to base. And then he had to come all the way back again.....

We eventually arrived home after 2 o'clock - a round trip of some four hours for a treatment which literally takes just a few seconds to administer, once the test results come back clear. Perhaps Friday's visit will run a little more smoothly....

Monday, 3 August 2009

Taking a dip .....Cycle 2, Day 7

Yesterday and today, Steve's taken a dip, not in the sea or a pool, but in himself.

He felt out of sorts on Sunday, so probably not a bad thing that we had to abandon plans for lunch out with friends to avoid the risk of Anne and Colin passing on the swine flu bug which their son has just come down with. Get well soon, Alex!

Things worsened as the day progressed and culminated in a mad dash for the bathroom around 5 am this morning - the emergency bucket has been close at hand since then. By this evening things had improved a little; Steve felt able to eat a small meal, drink some water and keep down the anti-nausea tablets for the first time today, before turning in for a very early night.

Whether its the cumulative impact of the Cisplatin (in which case, it's worrying to think that it won't get any better over the coming months) or a bout of food poisoning (or perhaps too much clotted cream with the strawberries?) we really cannot say. However, the prospect of going to hospital tomorrow for another dose of chemo is not something that either of us is looking forward to...

Perhaps the most difficult thing to deal with in these circumstances is the feeling of helplessness - I simply don't know what to do to make Steve feel comfortable. Steve says he doesn't know what to do either. The pair of us feel more like a couple of lost children than grown-ups in control of our fate (not that we've ever felt that much in control...) Let's hope we can develop some coping mechanisms to hep us get through times like this.

In her e-mail today, Lesley said when you're in a trough it's difficult to see through to the next high. Wise words - it actually helps to think in terms of lows and highs - at least that way, when you're down, you can look forward to coming back up again, rather than sinking even lower. Today was a definite trough. Let's hope it's bottomed out and we can begin to go up again soon.