Reasons to be cheerful......Cyle 5 , Day 11

Reasons to be cheerful:

• Steve wasn't sick first thing on Thursday or Friday morning
• the last dose of Velcade in Cycle 5 was given today
• Steve was home from hospital by 1.30 p.m. - quickest turn around ever... 
• no chemo next week!
• no hospital for any other reason next week!!
• only one more cycle of chemo to go now!!!
• at least one of my pictures in the Woodstock exhibition has been sold
• Jack has a new bathroom (including a shower and a toilet that flushes without having to get you hand wet!) 

All things considered, a celebratory drink is called for tonight, I think!

P. S. ....waiting in vein (not a typo!) Cycle 5, Day 8

Some two and a half hours after we arrived at hospital this morning, Steve's test results came back from the lab. Everything in order, other obs fine and he was cleared for treatment.  Due to staff shortages, it then took another one and a half hours before a chemo nurse became free to administer the Velcade.  


In the meantime, one of the ward nurses tried to insert a cannula in Steve's right arm without any success - she couldn't find a good vein. Chemo nurse No 1 then went hunting in his left arm, but gave up after a couple of failed attempts. By this time, both arms were dotted with little wads of cotton wool and sticky tape. Finally chemo nurse No 2 managed to get a line in on her second attempt.  Well done, Rowena - we were beginning to get a bit worried!


Steve's supply of anti-nausea tablets had not arrived from the pharmacy by the time today's treatment was over. All being well, he should have just about enough to tide him over until the next visit on Friday.  Fingers crossed!  As we made our escape after the best part of a day on the ward, we bumped into Charlie, the staff nurse who normally looks after Steve. Her tips when waiting in vain for a vein to be found are (a) drink plenty of water the day before and on the morning of the hospital visit, (b) hang the arm below heart level and let gravity help, and (c) warm up the arm to stimulate blood flow.  


OK, Steve. No excuses.  You know now what you must do on Thursday and Friday morning to avoid this happening again, while I'm away training in Birmingham.....and don't walk out of the hospital without picking up the supply of anti-sickness pills.  I won't be there to remind you!

Little things mean a lot...Cycle 5, Day 8

Yesterday we had an unexpected visit from our next door neighbour bearing a gift bag full of home-baked goodies and a plate of wobbly blancmange with raspberries - what a lovely surprise!  


The proprietor of Hope House in Woodstock e-mailed to say that a lot of people had come to look at my exhibition over the weekend, which was very thoughtful of him.


We continue to have messages of support from friends, especially when they can see from the blog that the side effects of chemo are making life is a bit challenging at the moment.  


These little things mean such a lot.  Thank you, all.


Steve's body clock is still working perfectly....problem is, it's still an hour out of synch with the rest of the UK since the clocks went back at the weekend.  Still, we managed to drop back off to sleep after this morning's rude awakening episode with the emergency bedside bucket (which seems to be the norm these days) and start again when the alarm went off at the normal time for a hospital day.


Although the chemo side-effects are a pain, we did get out yesterday for a walk into town to post a CD with our submissions for Portfolio 2, a photographic book showcasing the work of members of the Royal Photographic Society (RPS).  Oxford city centre looked wonderful in the October light and it was so warm for this time of the year. Quite beautiful.  

I went back into town later for my seasonal flu jab and a quick trip to the Botanic Gardens to check the name of a plant for an image title (and here is the Heliconia - or Lobster Claw as its sometimes called - in question). 


Steve was in a flat panic when I arrived home, feeling sick and thinking that I had taken all the anti-nausea tablets with me. In fact, I only had the usual emergency packet in my bag. He had another packet in his "hospital" bag, and there was a third in the kitchen which had cunningly gone into hiding under a tea towel. Panic over. Mental note to self: Don't forget to turn on mobile phone when going out....


We should have a supplementary stash of tablets after today's hospital visit.  Perhaps, we should put a packet in every room, so they are always at hand!

Body clocks....Cycle 5, Day 7

It's time-consuming but not a difficult job to reset the various clocks, watches and times spread around the house when British Summer Time comes to an end.  We even manage to time-shift our activities without too much of a problem. However, internal body clocks are different matter!  Steve's body clock is still on old time, so the morning wake-up call (greeting the emergency bucket beside the bed) came an hour earlier today.  Which explains why the blog is being written before 9 a.m. rather than late in the evening.  Might as well make the most of rising early!  


Thought for the day: How long it will be before Steve's body clock is back in sync with the rest of the world?  

Easy does it....Cycle 5, Days 5-6

It's ironic that the thing which is supposed to improve your quality of life over an extended period in the long term makes you feel rotten for much of the five months it's in progress.


When you feel washed out, there's not much you can do except take it easy - which is how Steve's been feeling this weekend while life has gone on around him, more or less. He likes being lazy creatively (his normal mode).  However, he has found enforced laziness very frustrating when there are things he wants to do. Just have to batten down the hatches 'til it passes.  We keep reminding ourselves that he will feel a little better as this cycle continues, and there's only one more cycle after this, for the time being at any rate.


The side effects of chemo have been compounded by the bug he's picked up in the last couple of days.  Although I've done my best I to keep my cough to myself, I think it's almost impossible not to pass on germs without going into isolation.  So we kept ourselves busy yesterday taking his temperature every few hours. It was getting dangerously close to the point where a call the hospital would have been necessary, but thankfully has now subsided so I think the crisis has passed. Time for me to have the swine flu jab, I think.  Steve will have to wait until the full course of chemo is over.


It's not been all bad.  We were cheered up by seeing Katie and George, albeit briefly - their waking hours do not coincide with ours these days!  I had a very positive response to the opening of the exhibition in Woodstock, which was pleasing. Jack will have a wonderful new bathroom when we next visit him in Bristol - oh, the joy of seeing the end of the ancient pink suite, at long last! Two more trips to the Churchill this coming week, then a whole week without a hospital visit -  a rare event since May. Something to look forward to!

A bit of an uphill struggle Cycle 5......Day 4

In the first few days of this cycle of treatment, we managed to get a few things done - food shopping, a bit of housework and hanging my exhibition at Hope House in Woodstock. But the side effects of chemo had kicked in with a vengeance by last night - Steve is feeling very washed out, the nasty taste in his mouth is back, and he's feeling queasy.  The emergency bucket is back beside the bed and was put to use this morning before going to hospital for today's dose of Velcade.


As on Tuesday, we were half expecting to be sent home again - almost convinced that the level of toxins would in his system would mean that Steve's blood count would be below the threshold for treatment, given the way he feels. And as before, we were surprised to be given the green light - but not surprised by how long it all took - three and a half hours for the blood tests results to come back, and another hour after that to find a doctor to sign off Steve's treatment and to deliver the chemo which was all over and done with in less than a minute.  Still, it gave me time to finish some work while Steve dozed off, having read the paper.


It looks like I'll be off to Woodstock on my own tomorrow for the exhibition opening. But Steve won't be alone in the house - Katie and George are visiting for the weekend, catching up with Katie's old school friends. She is doing the rounds of 21st birthday parties while we seem to be getting a flow of invites to 60th birthday celebrations - the bus pass generation is engulfing us (not that any of our friends look or act like pensioners - not to us, anyway!)  

Being old is not about trying to be young. 

Nor is it about moaning about being ill and miserable and old. 

It's an entirely new, and very entertaining and rewarding experience.

Virginia Ironside

Full steam ahead......Cycle 5, Day 2

We set out for the hospital yesterday morning in a rather sombre mood, convinced that Steve's white blood cell count would still be below par because of his cold and worried about the answers we might get from the doctor in response to our questions....


To our amazement, the white blood cell count was up to scratch - just.  The long discussion with the doctor was reassuring and seeing the latest scan brought home to us how small Leo is relative to the lung he is living in. 


It seems that when researchers assess the effectiveness of chemo, they look at a whole range of responses; not just any change in the size of the tumour, but a whole load of other symptoms of the disease such as pain, breathing, mobility problems and such like.  Positive symptomatic responses contribute to the "effectiveness" of a treatment.  


As Steve's quality of life during his rest periods from chemo is good (no pain or breathlessness, good mobility) there are no symptoms of that type that the drug trial treatment could make better. Plus, measuring pleural thickening accurately is notoriously difficult. Seeing the CT scan helped us appreciate that problem. The standard treatment would not necessarily produce a better response in terms of tumour size. In retrospect, perhaps we were setting the drug trail benchmark too high.  No wonder we were feeling disappointed.  


Steve will be able to have the standard chemo treatment to help manage any deterioration in the future, should that become necessary.  Radiotherapy is another option to deal with any specific areas of pain.  Steve will be monitored every 2-3 months after the current treatment regime is completed.  There is no evidence to suggest that having a gap between finishing one course of chemo and starting another is harmful - Doctor Louise says it's better to have a rest, let the body recover from the toxins, enjoy life free from nausea and fatigue for as long as you can, before starting over again. 


Drug trials aren't rationed - in fact researchers are crying out for people to take part.  If another came along which Steve was eligible for and was well enough, he could take part if he wished. This would give him further chances to keep the cancer at bay.  


These answers made us feel much more positive...and seeing the very large expanse of good, clean lung on the CT scan was the icing on the cake.  Steve decided to finish the last two cycles of Velcade and Cisplatin.  The bottom line is that we don't really know what effect it's having, except that things are not getting worse. He says would rather live with an uncertainty which allows for hope, rather than a certainty which rules it out.  So we look forward.  


After Tuesday's session, there will be only one more L O N G chemo day and seven not-quite so-long chemo days...the light at the end of the tunnel is getting bigger.


We also heard that Steve is no longer alone on the Velcade trial - a new man was due to start on Tuesday.  We didn't meet him then, but I'm sure our paths will cross at some point during the one of the remaining visits.


So -  it's full steam ahead again - back on the anti-nausea drugs, afternoon naps and early nights, with the occasional dash to the bathroom.  But every day that passes now is another day closer to completing the full six cycles of treatment.   Then, all being well, we can look forward to some real quality time when the side effects wear off.  Oh yes, please.  Bring it on!

Questions, questions

Time to go to hospital again tomorrow to see if Steve's white blood cell count has improved sufficiently to continue treatment. We have our doubts about the likelihood of that happening as he's been fighting off a cold most of the week and that must have taken its toll on his immune system (although he appears to have won that particular battle!)


Time to talk to the doctor about the effectiveness of the drug trial compared to what we might have expected to see in terms of tumour size, had he received the standard treatment instead. We want to discuss what other options will be open to him in the future, should he decide to continue and complete the drug trial; assuming there are other options, would it be better to continue treatment with little or no break to ensure continuity and zap Leo whilst he is still relatively small, or hold it in reserve to take action if/when the tumour enlarges/spreads?  


We need to find out what monitoring we can expect once this current round of treatment is finished. Also, will Steve have the opportunity to take part in future drug trials (assuming he fits the eligibility criteria) or is there is a "ration" of one trial per person.  


Asking questions is the easy bit.  Making sense of the answers and reaching an informed decision is rather harder.  

Four months on and still going strong (mostly)

There are some events that you measure your life by: going to Uni, meeting your long term partner, moving into your first home, having a baby..  Diagnosis of an incurable disease is one such event.  The news on 16 June 2009 that Steve has mesothelioma marked a watershed in our lives - "normal" life ended that day, and living with cancer began. There's no getting away from the fact that our lives will never be the same again. But four months on, we're still going strong - most of the time.  


The emotional roller coaster takes us up and down.  Until someone discovers a cure for this horrible disease, we have to accept that Steve won't get better in the conventional sense of the word. "Get well soon" cards aren't appropriate in our circumstances (what greeting do you send to someone who is terminally ill?) and "carefree" is no longer part of our life's vocabulary. 


The frequent, regular visits to hospital begin to blur together after a while - eating into precious time and chopping it into small, disjointed blocks which makes it difficult to build up a head of steam to start or progress projects where continuity of more than a few days at a time is needed.  Plans are made, revised, abandoned and reinvented - living with uncertainty is like that.


The physical roller coaster reflects the pattern of chemo, and is dominated by the side effects of nausea, strange tastes and tiredness. Underlying this is the knowledge of Steve's vulnerability to infection now his immune system is compromised by the treatment.  He is acutely aware of any change in his body, questioning whether it might be a sign of the cancer spreading, rather than something mundane, such as indigestion, a muscle ache or a common cold. 


Frustration looms large - wanting to do something, anything, to fight this disease and beat the odds on survival. Submitting to chemo, only to find three months later and four cycles of treatment further on that it has not resulted in any significant change is disappointing, there's no getting away from it. We need to think very carefully about whether to continue the drug trial, or switch to the standard treatment - something to discuss in detail with the doctor, next week.


However, were it not for the physical side effects of the treatment, Steve would not know that he has mesothelioma. His breathing is not laboured; he walks into town and back without a problem. He has no chest pain (or any other pain, for that matter). During his "rest" weeks from treatment, we have crammed in a lot of living, getting out and about more than before all this began. At such times, we still wonder whether the diagnosis was correct - it's not supposed to be like this (not that we're complaining...)


It's scary looking into the future when there is no known cure for this type of cancer.  Because he took part in the drug trial, Steve will get a second bite of the bitter chemo cherry.  However, there is no back up treatment available on the NHS if/when he starts to deteriorate thereafter.  We take comfort from the pioneering work currently being done in Germany using a technique called chemoembolization to treat mesothelioma. We may yet get to meet Prof Vogl in Frankfurt.  But we hope it won't come to that until a long time in the future.  In the meantime, we have plenty of living to do in the here and now.  

How you think about a problem is more important than the problem itself, 

so always think positively

Norman Vincent Peale

(Thanks, Glyn!)

Not swimming, not drowning, just treading water...again....

We were fearing the worst (Leo grown), hoping for the best (Leo shrunk) but have ended up somewhere in the middle - the doctor says that give or take a few millimetres (larger or smaller, we know not) the tumour has not changed significantly in size.  She says this is good.  We are not so sure.  


After four cycles of treatment, we would have expected a clear sign of change to assess the effectiveness of the chemo; something to help us decide whether to continue with the last two cycles of the drug trial treatment or move on to the "standard" treatment. Whilst a "no change" outcome is miles better than the worst case scenario, the lack of any significant reduction in tumour size some two thirds of the way through the programme has planted the seeds of doubt as to whether the last three months have been a waste of time.....


Steve has the option to withdraw from the trial if/when he wants to. He didn't have to make that decision today - it was made for him: once again, one of the test results came back below the threshold specified in the drug trial protocol to proceed with chemo, so treatment is on hold for a week.  


The hospital dates on the calender and in the diaries have been rubbed out and the new regime has been pencilled in, although it remains to be seen whether test results will be satisfactory by next Tuesday - there was a two week gap between cycles the last time this happened, and on that occasion the test results were better than today's.  Once again, my work programme is out of sync with Steve's treatment, but it's too late now to make major changes...and anyway it could all change again next week.  


Still, the unexpected extra week's rest from hospital visits gives us time to sit back, take stock, do some thinking, write down the key questions we need to ask the doctor when we see her next week and maybe come to a view on how to go forward in the light of her answers.  


Perhaps we are overreacting to the "stable" result.  I'm sure that there are many others who would love to be in this position.  If the tumour isn't any bigger, then Steve isn't any worse.  In a cancer that can be aggressive, we should be thankful for that. Delaying treatment by a week or two would still allow the last cycle to be completed by the end of November/early December and hopefully give Steve a Christmas/New Year largely free of nausea and fatigue, which would be a good present. Always assuming that he decides to continue on the drug trial.  Time to pause for thought.

Nearly crunch time ..Cycle 4, Day 20

Tomorrow will be the last day of Cycle 4 of Steve's chemotherapy, so we start to brace ourselves for a number of things:

• the results of the CT scan and X-rays on Tuesday to see how Leo is doing

and

• another two cycles of Cisplatin and Velcade (not forgetting the associated side effects and frequent hospital visits) if this combination of chemo is doing the job of knocking Leo down to size 

or

• the start of a new regime using Cisplatin and Alimta (with fewer hospital visits but different side effects)

or

• a break between chemo cycles if any of the test results come back outside the drug trial parameters, but the trail drug is otherwise being effective

Who knows what will happen in two days time?  You'll have to watch this space to find out.  

Meanwhile, I'll be off in Bristol from tomorrow morning until lunchtime on Tuesday for work-related training, so there is the dilemma of when to phone Steve to find out the news. Probably best to wait until the training course is over and I can find a quiet place to myself (just in case Leo isn't behaving himself).  But it will be hard to concentrate that morning, not knowing the outcome.  

Lots of patience and positive thoughts required!

Flipping the switch ...Cycle 4, Day 18

At long last - Tuesday saw the start of things getting better in terms of chemo side effects.  By Wednesday, the switch had flipped and Steve lasted a whole day without taking an anti-sickness tablet.  He also stayed awake all day, enjoyed a bottle of wine with our evening meal and had a "normal" bed time.  


The feeling good turnaround happened just in time to deal with a crisis on the domestic front - the fridge died. Having established that it would cost almost as much to repair the old one as to buy new, we spent the rest of the day researching a replacement that would fit into the space available, tracking down a retailer with the chosen model in stock, and  taking an unscheduled trip to High Wycombe to buy and collect. So much for our plans to work on photography stuff!  Still, at least we now have fresh food to offer Katie and George, on a flying visit between Gatwick airport and Yorkshire, on their return from a short break in Spain.


Here's hoping the next few days are a bit calmer and more productive, and that Steve can make the most of his remaining "rest" days before chemo resumes next week, always assuming that treatment goes to plan.  A phrase with the words "eggs" "chickens" and "hatched" springs to mind...

Catching the rays .......Cycle 4, Day 15

Although it's been wet and windy outside, Steve's been inside catching the rays today: X-rays and CT beams to give us the insider's view on what Leo has been up to over the last eight weeks: shrunk, stayed stable or grown. Whether or not Steve stays on the Velcade drug trail will depend on the answer.  All will be revealed next Tuesday.  And once again, Steve will be on his own when he hears the news, as I have to be in Bristol for a training event.  Plus ca change...


On the positive side, today for the first time in this cycle of treatment Steve has not needed to take an antiemetic tablet (so far at least).  And he's still wide awake (unlike this time yesterday, when he was very drowsy).  It looks like cycle 4's chemo side effects are subsiding at long last, which makes what's left of the "rest week" look much more promising.  


It won't be a repeat of cycle 3, day 15 when we walked along the prom at Clevedon (photo posted at long last on blog for September 15th) but we hope to get out and about again on Friday.  By then we will have done some work on our submissions for the RPS publication Portfolio 2, an upcoming RPS event at Amersham, and my Woodstock exhibition - things which we keep us out of mischief for the next few days.


Oh, how wonderful it is to start feeling half-human again (and I'm not the one taking the poison).  Steve really is doing remarkably well, all things considered. 


Thanks to all of you who have been in touch in the last few days - I'm sure your positive thoughts have helped turn the tide of miserableness that's been washing over us recently. I think we're back on the upward slope now...

Like the lady said... ....Cycle 4, Day 14

In an interview in today's paper, actor Dame Maggie Smith talked about her experience of having (breast) cancer.  "It was hideous...not so good" she said.  The chemotherapy "was very peculiar, something that makes you feel much worse than the cancer itself, a very nasty thing".  You hit the nail on the head there, Dame Maggie.  


However, she went on to say "I used to go to treatment on my own, and nearly everyone else there was with someone....Why would you want to make anyone sit in those places?"  


The answer, Dame Maggie, is simple.  It's far better to sit with someone you love whilst they are being treated, pass the time with them, do an bit of fetching and carrying, share a joke, hold their hand when they are waiting for the results of tests, scans and assessments, than to wait anxiously at home for news, not knowing what's going on, wondering whether the long silence means there's a problem...


No one is making me spend time in hospital: I'm there by choice. Sharing the experience helps me understand better what Steve is going through as part of his treatment, and is a comfort and support to him. 


I can (and do, when unavoidable) leave Steve on his own when work takes me away from home, as it did today.  He was in bed, half-asleep, and still feeling rough when I arrived home late afternoon. I wish I could wave a magic wand and make it all better. But life isn't like that...so we batten down the hatches, grit our teeth (and all those other corny sayings about carrying on in the face of adversity) and remind ourselves that the side effects of chemo won't go on forever:

If you're going through hell, keep going

Winston Churchill

Take it easy ....Cycle 4, Day 13

By this time in Cycles 2 and 3, we were getting out and about, making the most of Steve's "rest" week.  Not so easy in Cycle 4. As well as the continuing fatigue, nasty taste in the mouth and nausea (all side effects of chemo) Steve has a bit of a sniffle and a sore mouth - just life's way of reminding you that you are still human and vulnerable to minor infections.  Nothing major, but enough to take the edge of what should be the start of a good week.


Still, we did mange to get out this morning for a quick trip to Woodstock (UK, not USA) to inspect the venue where my exhibition is due to take place as part of the Art in Woodstock Festival.  Hope House describes itself as a "boutique B & B".  In fact it's a lovely listed building currently being converted to visitors accommodation.  I thought an exhibition in a B & B would have a very limited audience.  However, the official launch of the venture will coincide with the exhibition/Arts Festival, so a few people might get to see my pictures after all.  Just got to print, mount and frame them now...No guesses as to what we'll be up to most of next week.  


So much for taking it easy.......

The wobbly human pin cushion ......Cycle 4, Day 11

At today's hospital visit the nurse had problems finding a vein - Steve's are known in the trade as "wobbly", a highly technical term that means they have a tendency to squirm out of the way when they see a needle approaching.  She ended up doing it twice - once to take bloods, and again for the cannula to deliver the trial drug, Velcade.  A pragmatic approach, but we noticed that she wasn't wearing the usual blue protective gloves, doubling the opportunity for hospital acquired infection.  Oh dear. 


The pin-cushion effect on his arms is increasing. He's been punctured 19 times since chemo began, taking into account todays' double whammy and two abortive visits when bloods were taken, but no chemo given due to a low white blood cell count.  


Luckily, no problems on that front this time round, although it took five hours before the test results came back and Steve was cleared for treatment - longer than our last visit when the samples had to be courriered off-site for testing. Hospitals move in a mysterious way.  


Steve came away with bald patches on his arms where the hairs came off along with the tape that holds the cannulas in place.  Now he knows how it feels to have your legs (or other body parts) waxed. Add to that nausea and morning sickness, and he will soon qualify as an honorary woman (if he doesn't hold that title already...)


We are now a bit demob happy.  No more chemo until 13 October. Bliss.

Birds flyin' high you know how I feel
Sun in the sky you know how I feel
Breeze driftin' on by you know how I feel
It's a new dawn, it's a new day, it's a new life for me
Yeah, it's a new dawn, it's a new day, it's a new life for me ooooooooh
AND I'M FEELING GOOD

Mike Bubble/Nina Simone

Good morning..............Cycle 4, Day 10

What a difference a day made
Twenty-four little hours
Brought the sun and the flowers
Where there used to be rain

Maria Grever and Stanley Adams

The three day run of early morning sprints to the bathroom is broken.  A much more civilized start made for a good morning. Although Steve is still popping the anti-nausea pills, we both feel in better spirits today.  


Looking back, I realize that in the last 20 weeks, there have only been two occasions when we've had a whole week free of hospital visits.  No wonder we were feeling a bit fed up going constantly to and fro, and wondering where all the time goes..... 


True to form, we'll be back in hospital again tomorrow for the last dose of Velcade in this cycle of treatment and back there again, next week - but not for chemo.  Whoopeeeee!