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  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 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.