Tuesday 29 December 2009

Changeover day, number crunching and more "thank you"s

It's an in-between sort of day - Christmas is over but New Year has yet to arrive; Jack departed for Bristol just as George arrived from Manchester; the weather can't make up its mind whether to rain, sleet or drop a few snow flakes. Time to catch up on some of the things we've been putting off.....

Because Steve's chemo treatment involved many more visits to hospital than the standard treatment, the company that makes the trial drug Velcade will pay for our travel and parking expenses. I spent some time this afternoon going back through the blog noting dates of visits specifically relating to chemo and associated assessments, and collecting together the parking charge receipts.  There were 32 visits in all between 10 June and 11 December, a total of just over 350 miles traveling back and forward between home and the Cancer Centre. Add to that the parking charges, and it begins to mount up.....

Looking back over the blog has also stirred up lots of memories - cannulas, blood tests, CT scans, X-rays, assessments, days out in "rest" weeks" between the long days in hospital for chemo. Still the side effects of the treatment linger on, but to a lesser extent with each day that passes.  A friend who has been through the chemo experience assures us that one day Steve will wake up and realize that he no longer has any side effects - we can put the sick bucket back in the cupboard and he can enjoy a meal without wondering whether it will be followed by nasty "off" flavours.  Thanks for the reassurance, Meg - much appreciated.

Re-reading the blog also reminded me of Jack's efforts to raise funds for cancer research by running in the Bath Half Marathon on 7 March 2010. Many thanks to Sarah and to Hil and Steve in Australia who have already sponsored him, taking the funds raised so far to 47% of his target.  The link to his Just Giving Page is on the right...If you have any money left after Christmas, please encourage the boy to carry on training through this horrible winter weather - he'll need to put in a bit of extra effort after all the mince pies he has eaten over the last few days!

Last but not least, we wish you all a very happy, healthy year in 2010 and look forward to seeing some of you here on 2 January!

Sunday 27 December 2009

the West Wing

We're going to be in the West Wing!

No.  Not the TV programme, but the new West Wing at the John Radcliffe Hospital here in Oxford, where three of our artworks have been selected to be hung in wards and private rooms!

Here are Steve's images:  

and here is mine:

I do hope that patients and visitors alike find them positive and uplifting.  Having spent so much time hanging around in hospital in the last six months, we fully appreciate the importance of enjoyable artwork to look at! 

the festive season

The run up to Christmas
The run up to Christmas felt like a bit of a sprint finish, but we got there in the end: last presents bought, wrapped and put under the Christmas tree; cards hung up and more news to catch up on; the festive season menu chosen and food shopping finished; all the time keeping an eye on the weather forecast as the snow and ice wreaked chaos on roads and public transport. The celebrations kicked off with pre-Christmas drinks with friends on Wednesday which helped to get us in a festive mood. A last minute reprieve in the weather meant that both Jack and Katie arrived home safely and on time on Christmas Eve, and all was well.

Christmas Day and Boxing Day
After all the rushing about, it great to chill out on Christmas Day with a lazy breakfast, a visit a few doors away to feed a friend's cat, followed by presents, from fresh flowers to fabulous things to eat and drink, homemade goodies, feasts for the eyes and charity presents with a healthcare theme (very apt) amongst other things!  Many, many thanks to everyone for your generosity! The Christmas meal went off without a hitch and we enjoyed an evening of tennis, motor racing and trivial pursuit on Jack's new games console.

Katie's friend Emily joined us for our Boxing Day walk. Other years we have headed for the hills (well, they count as hills around here - Shotover, Wittenham Clumps and the White Horse Hill).  This year, we stayed closer to home and on the level, with a walk along the west bank of the Thames as far as Godstow, a pit stop at the Trout for refreshment, and home via the wide open spaces of Port Meadow, trying not to slip on the icy patches or sink into the mud where the ice had melted! 

I put on the evening meal to cook for two hours before we were due to eat.  However, when we gathered in the kitchen a couple of hours later to prepare the vegetables, Steve noticed that the oven had only just come on...Not only had I set the oven timer for two hours, I had also inadvertently delayed the start of cooking by the same length of time. Doh!  So we were on to Plan B, something quick and simple that we could cook and eat in time for two of us to go out to the cinema as planned.  Thanks heavens for pasta and sauce - not our usual Boxing Day meal, but it did the job!  

Unbeknown to us, the hiccup on the catering front continued....Jack and I returned from the movies to find the gammon joint still in the oven, some two hours after it should have come out, while Steve sat in blissful ignorance in the front room, finishing the bottle of wine, having forgotten about it completely!    Ah well, that's one way to get very crispy crackling!

And now....

Today has been a lazy day, catching up on sleep, news from friends and thinking about the rest of the holiday and the approaching New Year. Unspoken, but there in all our minds, are thoughts of how Steve will be this time next year.  Although the side effects of the chemo still haven't gone completely, in other respects he appears to be well and continues to hold his own in the battle with Leo. Our first Christmas since diagnosis is over. May there be many more to look forward to in the future, as well as all the special occasions in 2010!

Monday 21 December 2009

the shortest day

It was a very jolly festive gathering in Bristol yesterday. Katie and George drove through the snow from Manchester to get there, and made it only a little bit late.  Our great nephew Zac entertained everyone delightfully.  Nick and Kate's "bump" was much in evidence, but wisely decided not to arrive early. How wonderful to think that he/she will be joining in the fun next Christmas!  In fact, everyone was in good form for our indoor picnic, even Steve who had been feeling a bit sorry for himself with a cold in the run up to the event.

We erred on the side of caution and decided to come home afterwards, rather than stay with Jack.  Looks like it was a good decision in retrospect.  Bristol was snowed in today, so we might have had a few problems getting away. As it was we've had a productive shortest day - the last packets and cards posted, the Christmas bird bought (so don't worry Jack and Katie - there will be food on the table on Christmas Day!).  We even managed to fit in a good deed - finding a purse full to bursting and taking in into the lost property office at the Police Station. I do hope the young lady who lost it thinks to give them a call.

As a photographer, I would have loved to have woken up to a blanket of snow. Taking that hat off, I'm so relieved that we have managed to escape the worst of the weather, which has been closing in around us but not made life horribly difficult so far, other than icy pavements which are bad enough. Thank goodness we don't have to go to hospital for chemo tomorrow.  What a relief that's behind us for the foreseeable future.  My heart goes out to all those still going through the treatment in the festive season......

Not long now; things are coming together nicely.  Hope your plans are working out too, wherever you are and whatever you are doing.  It's been so good to get all the Christmas cards and letters and to find out what you have all been up to - keep 'em coming!  And be careful out there....

Saturday 19 December 2009

one step forward, two steps back

Just when we thought we were moving forward, the going gets tough again.  The tiredness that Steve has been experiencing since his flu jabs on Tuesday has turned into a cold - the catarrh is making him cough and this seems to have triggered a worsening of the nausea and sickness that had been getting better slowly. So much for putting the emergency bucket back in the cupboard....

As it's easier to handle such feelings at home, especially first thing in the morning, we have abandoned plans to go to a festive gathering in Wells tonight (sorry, Chris - catch up with your in 2010); cancelled the B&B (but still have to pay due to the short notice...ah well, such is life) and will have a chilled out day at home instead.  Steve can rest and recuperate while I wrap the family presents and prepare food for tomorrow's gathering of the wider Wride clan and partners.

Fingers crossed, Steve will feel like traveling tomorrow. He's been rather dispirited these last few days, probably because of the cold developing. It's that time when you look back over the old year and forward to the new one....I think that looking back has rekindled those feelings of anger, helplessness and frustration we experienced in June, when we first heard about Steve's condition. 

Looking forward, Steve is wondering just what to do - he doesn't feel in a position to make long term plans; the things he ought to do in the short term about legal matters, financial affairs and responding to the solicitor are not very appealing; the structure imposed on our day-to-day lives by the regular visits to hospital no longer exists, and he finds himself drifting, with little or nothing at the end of the day to show how he spent the hours.  When you are acutely aware of your own mortality, a feeling that that you have been wasting time does not put you in a positive frame of mind... 

Some how, he needs to find a focus or target that is challenging and rewarding, but still achievable in a limited period.  Something to work on, I think.

Friday 18 December 2009

moving forward

Barring the unexpected, Steve had his last hospital appointment of 2009 yesterday.  Nothing to do with mesothelioma, but a return trip to the orthopaedic centre for the team to "review" his carbon fibre finger joint, which replaced the arthritic joint four years ago. It's still there. Still working. No oil required.  

He was asked about his general health so had to tell them about the cancer, which rather puts his arthritis in the shade. Nevertheless, they have invited him back again in 12 months to see how the replacement finger joint is faring. Let's hope that we are still here in a year's time, moaning about a hospital appointment so close to Christmas....

We have also had what I hope will be the last trip to the GP in 2009: we both had our swine flu jabs on Tuesday and Steve also had the seasonal flu jab in his other arm. Poor thing - both arms aching, not just one.  Our arms are still a bit tender, and Steve has also been feeling tired these last couple of days, which we assume is the side effect of the two flu jabs - just when he's almost recovered from chemo side effects....It will be a good day when he finally decides that it's safe to put the emergency bedside bucket back under the kitchen sink!

With hospital and doctor's appointments finally over for this year, we can move forward with preparations for Christmas. Time to wrap some presents, me thinks....

Wednesday 16 December 2009

Six months on

It's six months since Steve was diagnosed with mesothelioma and I'm pleased to say that he's still going strong. 

Looking back, I have to admit that the chemo was grueling, particularly the last few cycles, where the side effects never really eased off during rest weeks.  Indeed, they still haven't disappeared completely, but we are getting there.  It is a relief, however, to be able to look forward to a break from hospital visits - in the last six months, there have been only three whole weeks in which we didn't have one or more trips to the cancer centre.  It wasn't just the hours involved in hospital and traveling there and back, but the way in which the time between visits was so disjointed - never more than 2-3 days at a time to get on with life.  

In some ways, we are learning to live with Steve having an incurable illness. It helps that, at present, he is not having difficulties breathing and his mobility is not affected, so life goes on as usual in many respects - we still have to do normal things, like shopping, cooking, household chores (although some have been ignored for as long as possible.....) It's always in the back of our minds however, that this could change very rapidly at any time, and then there is the prospect of more chemo - not something either of us are looking forward to. 

That said, although finishing the last course was a relief, we feel a little like we have now been cast adrift in a vast ocean, at the mercy of the tides and the weather.  What do we do now? What happens next?  It wasn't something we talked to the consultant about at the last assessment visit, other than to make an appointment to see him in three months time for another CT scan and X-ray to assess any change.  After feeling that Steve has been the centre of the team's attention for six months, it now feels rather bizarre to have drop off the radar completely for the next three months.  

However, we are not sitting idly by waiting for the worst.  Since the problems with his white blood cell count during chemo which lead to treatment being postponed three times, Steve has been taking vitamins, zinc and omega fish oil supplements to help boost his immune system.  He hasn't had a problem since, even though he felt rough during the last few cycles.  So that regime continues..  

Our continuing quest for information about meso treatments threw up research about the effectiveness of a medicinal mushroom Agaricus Blazei Murill (ABM), which is widely used in Brazil, China and some other European countries where it grows naturally.  It was reported recently in the Journal of Medical Case Reports that a mesothelioma patient who took ABM had a clinical tumour disappearance during a 29 month follow-up period.  We are not assuming it will be a miracle cure for Steve, but it fulfills the need we feel to do something active in the fight against Leo. Guess what's on the breakfast menu every day now...

So - here we are, six months on, still going strong, in spite of falling into emotional pit holes occasionally, and trying not to be too daunted by what inevitably lies ahead at some point in the future. We are determined that it won't spoil the here and now, if we can possibly help it.  And on that positive note, who is going to invite us to a New Year's Eve party to remember?

Tuesday 15 December 2009

one small step and lots of celebrations

Unless Steve has a late night panic, this is a special day - the first time in ages that he not needed to take an anti-nausea tablet. One small step, but a good sign, nevertheless!  Cause to celebrate - which we did this evening at the Oxford Studio Christmas meal, with our friend Ruth over from Vietnam for a short stay.  We toasted Steve's success at keeping Leo under control and my success in the RHS Photography Competition - more of which when it becomes public officially!

The 60th un-birthday party celebration on Saturday was very enjoyable - many thanks, Elizabeth! The wine flowed freely; there was excellent home-made food; live music...and we were weren't the only ones dancing!  As well as meeting E's family, I bumped into my former tutor, John G, from student days, and David C from my time at Oxford City. We also spent some time singing along with, and talking to, a couple whose son worked with Ruth's daughter. They had also visited Vietnam, where we still hope to go next year. When we walked into the treatment room at the GP surgery today for our swine flu jabs, there was the same lady we had been talking to on Saturday night.  It's a small world....

Slowly but surely, plans and preparations for Christmas are coming together.  The cards are posted or have been delivered locally, by hand.  Most of the presents are sorted out.  The tree will come inside tomorrow to be decorated and a Christmas wreath will go on the door.  And we might even have some snow.....

I'll try to post some pictures soon. This blog is a bit light on images for a pair of so-called photographers!

Life is almost close to being normal.  It feels good.  We do hope to see lots of you at some point or other, over the festive season!

Friday 11 December 2009

He said... We said.... And the bottom line is......

The hospital clinic was running more than an hour late yesterday, so they kept us in suspense about the outcome of Steve's test results after a full treatment of Cisplatin and the trial drug, Velcade.  

When we finally saw the consultant, he said
"Do you want to know the bottom line?" 
We said "Yes", nervously.  
He replied "No change - possibly a millimetre smaller here and there, but not what we would call a significant response".

So there you have it.  Five months and six cycles of chemo later, and we're still in the same place.  Bit of an anti-climax, really. All those hospital visits, cannulas inserted, bloods taken, chemo administered, sickness, nausea, tiredness and such like, and Leo is still the same size. Still, he isn't any bigger, so he's not winning the fight.  May be we have the chemo to thank for keeping him in check.  Only time will tell if that's the case.

Steve still has the standard chemo treatment as a fall back option should he need it, and there are likely to be be other drug trials in the future which may be worth exploring. Having chemoembolization in Frankfurt (like Debbie in Plymouth) might be a way forward, whilst taking more natural supplements to boost immunity won't do Steve any harm, and might do some good.  Likewise good diet and exercise.  

We can take comfort from the fact that a normally aggressive cancer is still stable, nearly six months after diagnosis.  And the side effects of chemo are slowly slowly wearing off.  Hallelujah! 

Although it wasn't the outcome we had been hoping for, it was the one we were expecting, rather than the one we were fearing. Steve said, yes, I'm OK - go to Bristol, so that's what I did.  It was great to meet up with my work friends, albeit for a short while! When I returned home today, there was good news: three of our pictures were sold at the Radley College exhibition; the local NHS Trust has bought three more of our prints (two of Steve's and one of mine) for the new West Wing at the John Radcliffe Hospital here in Oxford, and the RHS has shortlisted two of my images in this year's photography competition.  We may have reached stalemate with the tumour, but at least our artwork seems to be enjoying some success at the moment.  

We bought a Christmas tree this evening.  There is a 60th Un-Birthday party to look forward to tomorrow.  I'm now on leave from work for three weeks, so plenty of time to get ready for Christmas, between appointments next week for our swine flu jabs and Steve's return trip to the orthopaedic centre to prove that his carbon fibre replacement finger joint doesn't need oiling!

For a change, I might post some of our artwork next time....Break up the text a bit as they say....

...So don't worry...We're still here, going strong, feeling mainly positive and looking forward to Christmas!

Wednesday 9 December 2009

Almost human....sometimes!

Well, it was quite a weekend and Steve managed brilliantly, even though he's still in the process of recovering from the chemo side effects.

The main event was a trip to Kent on Sunday for a surprise 60th birthday and retirement party for Martin, a long-standing friend from our student days.  And it really was a surprise - he didn't have the faintest idea of what was in store when he arrived for what was supposed to be a meal out with two friends!  Mind you, he had to sing for his supper (well, play the keyboards actually) with his band who were up on stage ready and waiting for him to put in an appearance.  Great food, great atmosphere - Steve and I even managed a bop or two on the dance floor, safe in the knowledge that we didn't have far to travel at the end of the party, just upstairs to the B&B wing of the party venue.

Monday morning we set out for London where I did some prep for Tuesday's meeting, before going into town to see the Anish Kapoor exhibition at the RA then joining friends Peter and Paula for a wonderful meal that night, which gave us a chance to catch up on news and admire Ellie's cake decoration. That's my birthday cake sorted for next year!

Tuesday's meeting went smoothly.  Steve sat through it in the public gallery (without dropping off to sleep in spite of the exertion of the previous evening), so now he knows what I get up to when I'm working away from base...We were back at home at a reasonable hour, thank goodness, so plenty of time to recover.

Steve said that there were times this weekend when he felt almost human again after such a long time of feeling rotten with the chemo.  However, he has yet to last a whole day without taking an anti-nausea tablet and is still getting the weird tastes in his mouth, occasional tingles in his hands and feet which he didn't really notice until the last dose of chemo, and cramp in his leg (but that might just be old age and lack of exercise over the last five months).

Today we have been sorting ourselves out - me at work, Steve making a start on Christmas cards for our friends abroad, which we posted after dropping into the doctor to drop off another research study questionnaire into mesothelioma victims' employment and family history (which Steve has filled in already, as it happens).  

Took the opportunity at the surgery to get an update on the swine flu vaccination programme as we have heard nothing, in spite of being priority cases as a person whose immune system is compromised and his carer.  It looks like we had fallen through the net, but are now flagged up on the system.  Not a moment too soon.  My temperature has rocketed this evening to 37.9 C, just a whisker under the swine flu trigger of 38 C. However, apart from feeling hot and bothered, I have no other symptoms, so it's probably down to anxiety and wearing a big warm jumper.

We are both feeling a little nervous about tomorrow, when we pay a return visit to the Oncologist to find out the results of Steve's latest CT scan and X-ray. What will it show? Who is winning?  Steve or Leo?  Or is it still a draw?  

Assuming all is well, I shall leave Steve to look after himself for 24 hours or so while I go to Bristol after the hospital visit for a work centenary celebration and meal.  If all is not well, I won't feel much like celebrating so will probably stay at home so we can drown our sorrows together.   A big thank you to those who have already been in touch to wish us good luck for tomorrow.  The rest of you, please keep your fingers crossed for us!  

Watch this space for news....

Saturday 5 December 2009

The great debate

It's two weeks and a day since Steve's last dose of chemo and we had hoped that the side effects of treatment would have worn off by now....But no, they still linger on.  Most mornings and evenings we have the great debate.  Should Steve have an anti-nausea tablet or try to manage without? He's desperate to get back to "normal".  In fact, he is doing rather is doing well.  He's not taking tablets during the day. However, he still needs them at other times, either in the morning or the evening.  

It's all a bit of a merry-go-round.  There are times when Steve is up, feeling fine and prancing about in the kitchen to whatever the i-pod decides to play at random.  At other times he's fed up, wondering why he now appears to be having side effects that he didn't notice before, like numbness in fingers and toes.  The spasms in his leg continue to annoy him from time to time, usually in the evenings after a long day sitting in front of the computer....I wonder why?

I think it will all settle down eventually.  The cumulative impact of chemo side effects that have built up over five months are bound to take more than a couple of weeks to disappear entirely.  Going to hospital so frequently and knowing that he would feel rough after chemo, meant that he was expecting the worst.  Now that doesn't happen, he has no obvious reason not to feel good and more time to be aware of the things that bother him.  It's really not surprising that he is feeling the way he is at the moment. What he needs are some distractions.  Let's see what we can do.....Watch this space!

Tuesday 1 December 2009

How very strange......... no chemo!

It's Tuesday and we haven't had to spend the day in hospital - how very strange!  Now I think we can truly say that chemo is really over..

...What a pity the side effects aren't over as well, even after a rest week.  Following a couple of days respite, we were back to the morning sickness today, even though it was mild and swift. Steve still needs anti-nausea tablets morning and evening, and is getting frustrated by the strange flavours which are still affecting his taste from time to time.  That said, he really does seem noticeably better in himself in terms of energy levels, which are on the up (though still not normal) and mental alertness/taking an interest in things (the lassitude is lessening!)

It's 1st December and we have a busy time ahead, trying to make some more headway with preparations from Christmas.  However, as I have my head down for the rest of this week sorting out papers for a work-related meeting in London next week, I'm not sure how much progress we can expect to make in the meantime. 

Plans to get away for a short break before the festivities start in ernest have had to be put on hold/scaled down because Steve has a hospital appointment at the orthopaedic centre to review his bionic thumb the week after next, as well as next week's assessment meeting with the consultant to review any changes to the cancer following the last two cycles of treatment.  The chemo may have finished but the hospital visits carry on, for the time being at least.

However, I did manage to meet up with friends last Friday over a few drinks to catch up on news from Nottingham (lovely to see you Karen and Mark) as well as bumping into other old friends, quite by chance on separate visits to the Ashmolean (what nice surprises Paul and Veronique, and John and Kate!).  We'll be dropping in on other friends in London next week (looking forward to it, Peter and Paula!) and there's something else happening before then... but my lips are sealed until after the event!

Last but not least, a big thank you to our neighbour Marie, who never ceases to amaze us with her kindness and generosity. 

P. S. thanks for the Christmas joke, Glyn - Carols indeed! 

Sunday 29 November 2009

A small step forward.... Cycle 6, Day 20

For the first time since the start of cycle 6 of chemotherapy, I wasn't woken by the sight and sound of Steve retching into the emergency bedside bucket.  In fact, it's 10 am and he hasn't been sick at all.  A small step forward, but a very, very good one -  long may it continue!

He's still taking the anti-nausea tablets mornings and evenings, but feeling better for missing out day time medication.  We even managed an amble into town to sample the delights of the re-vamped Ashmolean Museum, enjoy the hubbub of Christmas shoppers, buskers and carol singers, and do a bit of shopping interspersed with refueling stops for lunch, cakes and coffee.  

With no hospital visits at all next week (only third entirely hospital-free week since June) we have started to look ahead more than a few days and to think about Christmas and the New Year.  We hope we'll enjoy many more of these together, but at the back of our minds is the thought that this might be the last.  Not being negative - it's an incentive to make it memorable for good reasons!  

Time to go on an expedition to the dark recesses of the loft storage cupboard, dig out the Christmas tree advent calendar and fill the little boxes with chocolate truffles and other such delights ready for the first day of December.

Thursday 26 November 2009

Back on familiar territory... Cycle 6, Day 17

Although chemo is over, we were on familiar territory again this morning, back at hospital for Steve's CT scan and X-ray. No food or drink for 2 hours beforehand, so we had to get up very early for Steve to have breakfast well before the deadline, to avoid the nausea and sickness that still troubles him if he doesn't eat little and often.

The procedures themselves were very quick compared to a normal chemo day, even though Steve had to drink a litre of water (with something in it to help show up everything on the scan) as well as the usual iodine injection that makes it easier to see the cancer cells.  The usual wait afterwards over a coffee in the cafe to make sure he didn't collapse, then home.

Back to hospital on on 10 December to hear the results.  I'm hoping to be allowed to arrive late for a work-related event in Bristol which starts that day, so that I can be there with him to hear the news.

Recovering from the chemo side effects is a long, slow process - Steve still needs the anti-nausea tablets first thing in the morning and late at night, but is gradually weaning himself off taking them during the day.  That seems to be helping his head clear and he's less drowsy....So, good news - especially as the last cycle of treatment isn't officially over until next Monday, when this "rest week" finishes. 

He's a popular man at the moment - not only does the cancer care centre want to see him on 10 December, the Orthopaedic Centre wants to see him on the same day to see what's happened to the finger joint he had replaced a couple of years ago.  As he has yet to master the art of being in two places at once, I think the finger clinic will have to wait!

Tuesday 24 November 2009

Guest appearance... Cycle 6, Day 15

Hello everybody, and today's blog is brought to you by the number 6, the letter Y, and me, Steve!

I'm told this the 100th post and I've been asked (told more like*) to write it.

I'd like to take this opportunity to thank you all for your kind thoughts and encouragement, it really helps.

How am I feeling? Gradually recovering from the chemo is the answer. Since discovering one of the side effects of the anti-nausea drug is "lassitude", I've cut back on my intake and I seem to be thinking straight again. The result is that I'm feeling more positive about things and am not dropping off at a moment's notice, although there is still a slight trend towards morning sickness. Persistence of off-flavours still comes and goes, but that too is improving. I'll soon be feeling "normal" again at this rate!

The next post will see a return to normal service, so it's cheerio from me, talk to you again come the 200th.

* Editor's note:  It was a very nice request with a big "please"

Sunday 22 November 2009

Little by little... Cycle 6, Day 13

Progress update:

  • No morning sickness for the last couple of days.  Will it last?  Can we think about removing the emergency bedside bucket?  
  • No longer any numbness in fingers
  • Ringing in the ears very infrequent and very intermittent
  • Nausea still a problem, still taking the tablets
  • Bad tastes in the mouth still a problem
  • Fatigue, still a big problem - Steve is doing his impression of the Sleeping Beauty again, as I write....
  • Cramps in the leg still a problem, but whether this is a side effect of the chemo or something totally unrelated we don't know
  • Difficulty concentrating is still annoying him - Steve just hates being beaten by a crossword or sudoku
So....progress is slow, as we knew it would be, but there are some measurable improvements in terms of chemo side effects, even though its only a couple of days since the last dose of Velcade

However, psychologically, Steve is still rather dispirited. Feeling physically washed out and mentally sluggish isn't helping.  I think it's also a problem with being back in limbo again, waiting for the next hospital appointment to come through; waiting for the results of the next CT scan and X-Ray to find out what's happening inside; wondering whether the efforts of the last five months or so have had (or will have) a beneficial effect, in the knowledge that we will never really know the answer to that question.  

Lurking in the background is a letter from the solicitor still trying to pin down where and how Steve was exposed to the asbestos that sowed the seeds of this illness so long ago. Neither of us can find the enthusiasm required to go on this particular quest at the moment, so the letter sits there, still waiting for a reply, looking at us accusingly....

Although we were fed up going backwards and forwards to hospital, at least it felt we were doing something to fight the cancer.  In recent weeks, we have longed for the treatment to come to an end.  However, now it's finished, we're faced with the reality that nothing is being done to actively combat the disease, and somehow that feels a bit like throwing in the towel.  On the other hand, neither of us could face the prospect of more chemo in the foreseeable future. 

Talk about a mass of contradictions and conflicting emotions!  

Saturday 21 November 2009

the view from the summit... Cycle 6, Day 12

I've come to the conclusion that undergoing a course of chemotherapy is a bit like climbing a mountain.  

It requires a considerable amount of time-consuming preparation before you take the first step.  Going through the foothills isn't difficult but it takes time, and you can sometimes lose sight of the goal.  

The closer you get to the summit, the steeper the ascent and the harder the going underfoot.  The air is thinner, it takes more energy to climb.  Tough terrain and bad weather can cause occasional set backs and delays.  There is altitude sickness and exhaustion to contend with, as well as the risk of frost bite and dehydration.  

There are times that the cold is almost unbearable, and you are sorely tempted to turn back...But the end is in sight, and you can't give up now, even though the final ascent requires all the determination you can muster and it takes every ounce of energy you possess to reach the summit.

And then you are there, on the top. Cold, exhausted, aching, but relieved to have made it.  You have come out of the clouds and can see see the way ahead, whereas up until now you have just pressed on putting one foot in front of the other, step by laborious step.  

But the journey doesn't end having reached the summit. You still have to make your way back down again, summoning up some more energy from somewhere to work that tired body for the descent.  Gradually things get easier as the body readjusts to breathing more oxygen. The altitude sickness eases off then disappears altogether.  The gradient lessens, the ground becomes easier, and the aches and pains get better....

Steve is now on the descent. It will take a while before the side effects of the chemo wears off and his energy levels pick up.  But he's on the right track, going in the right direction and slowly but surely, it will get better with every passing day.  

Post script

As the next blog will be No 100, I have asked Steve to write it (about time he contributed to the blog, other than telling me about my appalling grammar and typos)....Whether he will, or not, is another matter!  Watch this space.

Friday 20 November 2009

They think its all over - it is now! Cycle 6, Day 11

Well...very nearly all over, for the time being at least.  

It's twenty weeks and three days since our first meeting with Alana to discuss taking part in the Velcade drug trial. Since then, we've been to hospital 33 times by my reckoning mainly for chemotherapy, plus a few radiotherapy sessions, some CT scans and X-rays and three abortive visits when we were sent home again because Steve's white blood cell count was too low to continue treatment safely.  

But today Steve had his very LAST dose of Velcade, and we said our farewells and "thank you" to the staff on the Short Stay Oncology Ward which has felt like our second home since July, so much time have we spent there!  If you are at all curious about the Cancer Care Centre and live within reach of Oxford, there is a public open day tomorrow, Saturday 21 November, 11.00am-3.00pm.  Details http://www.oxfordradcliffe.nhs.uk/cancer/centre/centre.aspxt.  However, I think this is one invitation we can decline!

Although no more chemo is planned, Cycle 6 does not finish until 30 November, so officially Steve is about to start  a "rest week".  He'll need that period to get some relief from the side effects of the drugs, which have been building up with each successive cycle of treatment.  

We'll back in hospital again some time in the next week or two for Steve to have the last CT scan and X-ray to see what effect (if any) all the chemo has had on Leo, take part in the end-of-trial assessment and talk to the prof in the Chest Clinic.  More of that in the future....

But for now, we can both heave a huge sigh of relief that this stage in the treatment is over.  Steve isn't up to a big celebration yet, but we've treated ourselves to a big box of chocs and, I dare say, a bottle will be opened this evening! Perhaps tea out somewhere special over the weekend.  All being well, he'll be feeling much better by the official end of the last cycle and we can enjoy a big celebratory meal and let off those spectacular fireworks!

We're not the only ones with something to celebrate today - happy 21st birthday Gina and many, many happy returns!

Tuesday 17 November 2009

Blood out of a stone... Cycle 6, Days 7 and 8

The upside of the new anti-nausea tablets is that they seem to work. The down side is that they make Steve feel very drowsy, a bit tetchy and make it hard for him to concentrate; even just reading a newspaper or doing a crossword is hard going.  He's also noticed a numbness in his fingers (a chemo side effect not felt before), has muscle cramps in his leg (whether that's another side effect or a pulled muscle, we know not) plus some minor loss of hair after washing.  Thank goodness there's not much more poison to take!

Having spent most of yesterday in bed, Steve decided to try to do without the new medication, if possible. Although he was sick first thing, he did manage to get through today's hospital visit without recourse to the new tablets and without dropping off to sleep.  And his head seemed clearer.  So..a good decision.  

Because he'd spent so much time in bed yesterday, Steve hadn't taken on much fluid.  This had a knock on effect this morning: dehydration can affect how easily or difficult it is to insert a cannula.  It took almost an hour, two nurses and four abortive inserts to find a  "good" vein, before Duncan finally hit gold on the fifth attempt. Talk about getting blood out of a stone.  By the end of it, Steve started to look like a pantomime snowman, with blobs of cotton wool stuck on both arms, where the needles had been removed.   

Five hours later, the tests had come back clear, the Velcade had been administered, and we were finally home again just in time to catch the last parking space in the street.

That's it - the penultimate dose of Velcade is done and dusted.  Just one more to go!  

"Some fans are on the pitch 
They think its all over..."

Ken Wolstenhome

To be continued....

Monday 16 November 2009

Five months on.... Cycle 6, Day 7

It's five months to the day since Steve was diagnosed with mesothelioma and he's now almost at the end of this last cycle of chemotherapy.  If you have followed the blog, you will know that the side effects of chemo have been cumulative in his case (everyone is different in this respect).  

In recent weeks, the nausea, sickness and fatigue have started earlier, lasted longer and been stronger.  There has been little respite even in the "rest" week between cycles 5 and 6.  Yesterday, Steve said that had he felt like this at the same stage in cycle 5, he would not have started the last cycle of treatment. But with only two more doses of Velcade to go, I think he will last the course, determined as he is in spite of feeling rough. These Wrides can be stubborn like that!

All the comings and goings, backwards and forwards to the hospital over the last five months has kept us pretty busy. So much so, that there have been times for me at least, when the day-to-day process of getting on with living has dulled the bigger picture.  A skin has formed over the raw emotions of the early weeks as we plough ahead, determined to be as positive as we can about the potential benefits of chemo and making the most of the days when Steve has felt good.  

However, the veneer is fragile and the emotions just below the surface break out from time to time. Then the tears well up, as I remember that Steve is living on borrowed time.  I have to remind myself not to give too much weight to the survival rate statistics which are so crude as to be meaningless when applied to individuals.  

We keep telling ourselves that although he feels awful at the moment, he hasn't had any chemo side effects that are life threatening or causing long term damage, unlike some people on the earlier trials of Velcade. And it seems that everyone who has Cisplatin (which appears to be the norm in many cancer treatment regimes) experiences nausea, sickness and fatigue to some degree, so he is not alone.  

The cancer itself appears to be under control, and is not causing Steve pain or making him breathless. The side effects of chemo WILL wear off when the current regime finishes and then he will be able to get on and do things, and enjoy life again.  Just in time for Christmas and the New Year.  

Leo, please stay small and neat for a very long time to come. That's the best present we could ask for this year.  

Friday 13 November 2009

the show must go on .... Cycle 6, days 3-4

No let up on the chemo side effects yesterday: nausea, sickness and extreme fatigue were the order of the day. Between naps, brave Steve managed to stagger round the supermarket with me to do the weekly food shop... but it was hard going.  

So it was a pleasant surprise at hospital this morning to find that all his obs were fine.  He continues to put on a little weight and the white blood cell count was a long way above the threshold for treatment, after being borderline on Tuesday. 

The doctor prescribed some stronger drugs to counteract the nausea and sickness and Steve was given a dose intravenously there and then to give him a boost.  Although the blood test results had come back more quickly than normal, there was some sort of mix up taking the Velcade off "hold".  So we were still sitting on the ward waiting for treatment a couple of hours after being given the all clear to start. By the time the chemo arrived, Steve's vein had got fed up waiting and closed itself off, so another cannula had to be inserted in a different vein.  How many holes can an arm take?  More than you would think possible, believe me! He now has a rather fetching pattern of bruises where other people have tattoos.  

Strange to think that next week will be the last of the scheduled visits to hospital for chemo - it's been going on so long, we've become institutionalized.  He will be back again after treatment finishes for a CT scan/X-ray to see what Leo has been up to over the last six weeks, and to see the chest doctor.  But only two more doses of Velcade then no more poisons in this round of treatment.  

We are keeping our fingers crossed that the new drugs will make life a little easier in the coming days.  The only downsides are that they will make Steve drowsy and he must avoid alcohol, so it looks like I shall be hitting the bottle on my own over the weekend if I feel like drinking. But it will be worth it, just to see him perk up after the last few difficult days. 

Wednesday 11 November 2009

Here we go again... Cycle 6, Day 2

Day 2 of the last cycle of chemo and the side effects are back with a vengeance.  Steve took two anti-nausea pills with a cup of coffee in bed first thing.  Within minutes they had come back up again, along with the coffee, into the emergency bedside bucket.  

On the positive side, this episode didn't spoil his appetite and he was soon up, eating breakfast and taking the steroid anti-sickness tablets which he also needs for the first few days of the cycle. And they stayed down.  

By mid-morning however, Steve felt so tired that he took himself back to bed and stayed there, asleep for most of the time, until I woke him up for a bite to eat with his 2 o'clock steroid tablet.  

A bit more protein seems to have done the trick, and he is now up again, surfing the net and moderating the RPS forum.  It remains to be seen how late he can stay awake this evening.....

Will this be the daily pattern for the few weeks or so, I wonder?

Tuesday 10 November 2009

The shortest longest day... Cycle 6, Day 1

We were preparing ourselves for two things this morning: (1) getting to hospital then being sent home again looked like a possibility, given that the chemo side effects from cycle 5 lasted right through Steve's "rest" week, and (2) a very long day on the ward, if Steve's tests came back clear. We were wrong on both counts - he just managed to get over the first hurdle, and everything went like clockwork in terms of timing.  In fact, we were home an hour and a half earlier than normal on a long chemo day, which was great.

That's it.  The last LONG chemo day of this treatment is over.  No more Cisplatin for the time being.  Just three more short chemo days for Velcade, followed by a CT scan and X-Ray to check progress, and an appointment at the chest clinic to make sure that the lung linings are still stuck together, and no fluid where it shouldn't be.  But I'm getting a bit ahead of myself...for now we must batten down the hatches and get through the next two weeks.  Back to hospital again on Friday.....

Monday 9 November 2009

One week on.........Cycle 5, day 21

Where has the last week gone?  It's been difficult to keep track of the days with no hospital visits to measure the passing of time. Although it's been a "rest" week from chemo, Steve has still been taking anti-nausea tablets and had the odd afternoon nap to keep up his energy levels due to the cumulative impact of the chemo side effects.  I've been down with a cold and cough, so keeping my distance and blowing him kisses to avoid passing on germs (seems to have worked). All this meant that we were taking things relatively easily until the end of the week.  However, things have been rather more lively in recent days! 

Steve and I enjoyed the Private View of the Radley College Christmas Cracker event on Friday night, our mood enhanced no doubt by the sale of two pictures by the time we left.   My girlfriends arrived in Oxford on Saturday lunchtime, bringing with them blue skies and bright sun for the start of our get-together. 

It's fun being a tourist in your own city, for a change.  Over the last couple of days we have walked ourselves silly taking the long, interesting ways around the back streets and waterways to arrive at our chosen destinations.  We've been sight-seeing around the University area, the Thames, the Canal and the Botanic Gardens; toured the re-vamped Ashmolean Museum (excellent), visited Modern Art Oxford, enjoyed a bit of retail therapy, and watched the big firework display and bonfire in South Parks on Saturday night.  As usual, Oxford was buzzing with locals, students and visitors; we passed a crew filming the latest episode of Lewis at the Divinity Schools yesterday and sat next to Melvin Bragg and his sound man today at lunch today....

Meanwhile, Steve enjoyed a rugby fest on the TV on Saturday, then became an honorary woman for the rest of the weekend, joining us for a Thai meal out last night at the Chiang Mai Kitchen and at the Grand Cafe for lunch today. What a thoroughly enjoyable few days.  Thank you so much, Chris, Prue and Jenny for bringing the girls' weekend to me this year.  Much appreciated!

Photo courtesy of Chris W - thanks, Chris!

Although we let off a few fireworks on 5 November, we didn't feel in the mood to set up the big ones in the park so decided instead to save them to celebrate the end of the last cycle of treatment.  After so long, I can't quite believe that will start tomorrow....

In many ways, it's such a relief to be in the countdown to the end of treatment.  Just one more dose of Cisplatin and four more doses of Velcade to go. However, we know it's going to be hard getting through the next few weeks and then what?  Hopefully a happy Christmas and New Year once Steve's body recuperates from the attack it's been under since July, followed by a long period of continued stability, interrupted only by occasional hospital visits for regular scans to keep an eye on Leo.  

We won't know what to do with ourselves, will we boys and girls?......Oh yes, we will!

Monday 2 November 2009

Just like buses .....Cycle 5, Day 14

You know how it is sometimes......nothing for a while, then lots of things come along together, just like buses.  

Fireworks night later this week follows hard on the heels of Halloween - so lots of "woooooos"  and scary faces last Saturday followed by bangs and swooshes this coming Thursday, as soon as it gets dark! 

The Art in Woodstock exhibition at Hope House closed yesterday. Today we did a quick turn around, swapped out some of my photos and added in some of Steve's and delivered them to the Sewell Centre Gallery at Radley College for "Christmas Cracker", the college's annual celebration of art and craft which opens next Saturday.  

The deadline for the Christmas edition of West Oxford News, the community association newsletter which Steve designs and edits, is upon us...so plenty to keep him occupied indoors.  Then this evening, he was contacted by BBOWT, the local wildlife group, to see whether he's interested in designing a poster/handout for them - only catch, it has to be at the printers Monday morning, same as WOCA news. No pressure then....

What a good job there's no chemo this week, and that Steve is feeling less tired (though still taking the anti-nausea tablets).  The bad news is that I have come down with a cold, so will have to take care not to spread my germs around.  How ironic - I have my first ever flu jab then succumb to a common cold.

Got to be better soon - I'm due back at work on Thursday, it's the Radley Private View on Friday and a long awaited get-together on Saturday with my girlfriend contemporaries on Saturday.  They are coming to Oxford for a long weekend instead of going to Liverpool or Prague, so that I don't have to abandon Steve.  What wonderful friends - how thoughtful! The Round Table has kindly organized a big firework display and bonfire in South Parks on Saturday night for us, and the revamped Ashmolean Museum re-opens that same afternoon.  So....

....lots to look forward to in this welcome "rest" week, before we have to batten down the hatches for the sixth and final cycle of chemo in this drug trial.

Friday 30 October 2009

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!

Tuesday 27 October 2009

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!

Monday 26 October 2009

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?  

Sunday 25 October 2009

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!

Friday 23 October 2009

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

Wednesday 21 October 2009

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!

Monday 19 October 2009

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.