Monday 31 December 2012

Goodbye 2012

With Steve going through chemotherapy for the second time in three and a half years, it's easy to forget that there have been many special events, memorable occasions and good times during 2012.  So here's a quick look back at the last 12 months before the year slips away....

This year has seen some significant family events, starting in March with Steve's 65th birthday in March - when you are diagnosed with an incurable cancer, becoming an OAP really is something to celebrate! 

Our ruby 40th wedding anniversary was on 1st May.  When I started the blog back in 2009, I wondered whether we would make it, but make it we did and in style, in Marrakech!  

In April, daughter Katie moved from Manchester to London, where she has started a new life with partner Ed.  Since then she has got a new job and they are now buying their first flat.

Also in April, we incorporated Wride and Company Planning Consultancy and I held my first planning appeal Tribunal in Guernsey.  

During the year, I was fortunate to be awarded two photographic distinctions (AFIAP and DPAGB), have three images published in the Guardian Weekend Magazine and many more selected for online photography galleries 1X and Fotoblur. An invitation to join the judging panel of Best Shots photography competition; a interview/feature in Advance Images (a Malaysian photography magazine) and becoming a gallery co-ordinator for Fotoblur have been other photographic highlights of the year.

We have been off on our travels again, both at home and abroad: Rome, in the snow in February, made particularly memorable by the kindness of Giuseppe and Maria Adele; Morocco in the heat in May - souks, palaces; gardens and museums; a mellow September in Carcassonne, France with Katie and Ed.  

Closer to home, we've enjoyed wonderful short breaks in the UK with friends - a girl's weekend in Liverpool in March, followed later in the month by a few days in Bristol being tourists for a change, including a meal out with friends I worked with at the Planning Inspectorate, and a weekend in London, where we saw Agatha Christie's Mouse Trap and progress on the Olympic Park; Keith and Glynis's house-warming and anniversary celebration in Bury St Edmonds in June whilst the rain poured down on the Queen's Jubilee Thames Pageant, and a chance to visit my cousin who lives nearby; plus visits to Glorious Goodwood races and the Cass Sculture Park whilst staying with Anne and Colin in Chichester in August.

We've enjoyed having people visit us here in Oxford and days out with family and friends; cheering Rob in the Brompton (folding bike) World Championships at Blenheim Palace; visits to the Ashmolean Museum with Anne and Colin; a riverboat birthday tea party with Ruth and the Green family; a meal with Sarah on the roof terrace at Tate Modern; the Pre-Raphaelite exhibition with Jan and Peter; some wonderful meals out and at home with Sally and Jon, as well as trips to many exhibitions in Oxford and London.  

Not forgetting my birthday treat visit to the Olympic Park on the day following the Opening Ceremony, with Katie and Ed...and enjoying the rest of the summer of Olympic and other sport, in particular the Tour de France!

Some of the events of the year were more difficult, but had happy endings: Steve's mum was admitted to hospital as an emergency in September and it was a couple months before she was well enough to be discharged.  However she is now settled and thriving in a care home, much to the family's relief and delight.  

Over the spring and summer, I had to go to hospital for a gynae scan and biopsy, but nothing sinister was found so unless there is another incident, I carry on as normal.  

If you are a regular reader of the blog, you will know that the most dramatic change for us this year was Steve starting second line chemotherapy in October.  After along period of stability, the doctors thought it was time to have another go at knocking back the mesothelioma given the disease progression that was discernible since his drug trial chemo in 2009.  

Three months and four cycles of treatment later, I won't pretend that it has been an easy ride.  Steve has suffered the usual side effects of treatment - nausea, occasional retching; fatigue, breathlessness and a sore mouth, as well as the side effects of drugs designed to alleviate these symptoms: a skin rash and a fuzzy head, or chemo brain as its often called! 

However he has soldiered on bravely, taking the antiemetic tablets for nausea; rubbing in the cream for the rash; using the mouthwash for the sores; taking naps and early nights as and when necessary to deal with tiredness; grinding through the periods of feeling fuzzy mentally, and not complaining about being a pin cushion when there have been problems inserting the cannula into his hand or arm.  

For all we know, the treatment may have come to an end already.  Whether or not he has two further cycles of chemo (pemetrexed and carboplatin) will depend on out the results of the scan he had before Christmas and how his body is coping with the toxins that have been pumped into him over the last 12 weeks. We will have to wait for 2013 to hear that news.  However, it's not a long way off now.  In fact, it's only a few more days before his next assessment.  In the meantime, he's enjoying at least one extra week, if not longer, between treatments, which is very welcome!

Looking back over the last 12 months, we know we have much to be grateful for and we appreciate how lucky we have been, especially when we learn of others who have lost their battles during this time. Sadly, I learned today that two more meso warriors died this morning. Our hearts go out to all those affected one way or the other by this horrible disease, and we send positive thoughts to all those like Steve who battle on, confounding the statistics.  

When Steve was first diagnosed in 2009, he was told by the hospital consultant here in Oxford that he could have "a few months or several years" of life left.  In April 2010, a London mesothelioma expert estimated Steve's life expectancy as two years, but with a significant chance that he may survive more than three years and a significant chance that he may die within a year.  

As we leave 2012, I can say with delight and relief that he's already outlived the dire predictions and the expert's survival estimate, and is still going strong on the "more than three years" scenario.  And long may it last!

We wish you good health, happiness and fulfillment in 2013!  

Happy New Year everyone :-)

Friday 28 December 2012

Flames of Hope and Courage - Light a candle

It's that time of the year where people around the world light a candle in loving memory of those who have lost their lives to mesothelioma and other asbestos-related diseases.  

We will light a candle for Steve's dad who lost his battle with mesothelioma some twenty years ago, and for the meso warriors around the world who have died since then. 

You can do it too by following this link: Light a Candle

There are few symbols that offer more comfort than a candle blazing in the dark.  Please light a candle and leave a message to serve as a beacon of hope and inspiration to others......

Monday 24 December 2012

Ho! Ho! Ho! Impressions of Rudolph, the red nosed reindeer...

For different reasons, we have both been doing impressions of Rudolph, the red nosed reindeer these last few days....

...Having heaved a sigh of relief that having a tooth extracted last week didn't cause major blood loss, Steve has been plagued by minor nose bleeds these last few days.  We assume that its related to the chemo and its side effects, in particular a reduction in platelets that help blood clotting. Nothing too dramatic, but the tissues are close at hand, just in case.

...My red nose has been caused by yet another short, sharp cold -  24 hours of what felt like almost incessant sneezing, which has cleared up almost as quickly as it arrived, thank goodness.

Fortunately, our red noses have not prevented us from joining in the start of the holiday festivities; coffee and an exchange of presents with our friends Sally and Jonathan on Saturday morning; a glass of festive cheer on Saturday evening with other friends, Ian and Ruth and their family who have gathered briefly together in the UK before disappearing off to other parts of the world shortly.  

Daughter Katie arrived here on Saturday afternoon and all three of us de-camped to Bristol yesterday for a meal out with son Jack, then on to meet up with the rest of the family at the care home where Steve's mum is now a long term resident.  

Jack is working today, so won't be joining us until this evening - always assuming the trains between Bristol and here are still running....Flooding in the West Country is causing havoc with travel.  It's bad enough to be caught up in floods at any time, but must be heart-breaking at Christmas with so many family reunions planned and looked forward to....

We hope that you and your loved ones are safe and sound, and can enjoy the Christmas festivities together, wherever you are.

Safe journeys and many happy reunions!

Turn the sound up, watch and enjoy....A new twist on an old story :-)

Thursday 20 December 2012

Feeling festive, unexpected presents and a scan

I wondered how we would manage preparing for Christmas this year and whether Steve would be able to enjoy the festivities, knowing that he would be in the middle of chemotherapy and how the side effects of treatment can make life miserable at times.

Well, I needn't have worried.  The Christmas preparations have gone well.  The tree is up and dressed.  The house is decorated and there is a new wreath on the front door to welcome visitors and the New Year.

The wine rack has been put to good use and the kitchen cupboards, fridge and freezer are full of delights and treats, ready to try out some new festive recipes as well as some old favourites.

There are already presents wrapped and under the tree waiting to be given out to family and friends that we will be meeting up with over the next few days, or opened on Christmas morning. The last few are due to be delivered shortly...

There have been two unexpected presents - a glittering dragonfly from Meso Warrior Debbie in Plymouth, which almost few out of the envelop and now has a special place on the Christmas tree.  Thank you so much Debbie, what a wonderful surprise!  

As for the other unexpected present .....The upside of chemo is that you have a good excuse NOT to go to the dentist - to minimize the risk of infection and excessive bleeding (as the chemo reduces the number of platelets which are needed to make blood clot).  The downside is that that if you don't resume regular dental check ups post-chemo, you are not aware of any tooth decay until there is a problem.  Which is what happened to Steve the other night.....

...Suddenly, out of the blue, one of his molars started to wobble.  Oh dear!  Nothing for it but to get an emergency dental appointment the next day, chemo or no chemo, to get it fixed.  Steve came home, minus one tooth with a plug of wadding in his mouth to help stop the bleeding.  

Much to our relief, there wasn't a lot of blood loss and although he had to use a straw to drink until the anesthetic wore off, everything is now back to normal.  He was very brave and left his tooth behind at the dentist as a present for the tooth fairy :-)

He's been brave again today - filled up with water and iodine and into the scanner at hospital to see what's been going on inside. In the normal course of events, the next few weeks would be marked by increasing bouts of "scanxiety," waiting and wondering what the results will be. However, this time round there are so many other things to look forward to and distract us, that I don't think it will be a great problem - at least not while the festivities last!

Sending love to each and every one of you at this special time of the year xxx

Monday 17 December 2012

Clouds and silver linings: Chemo cycle 4 week 2

Ever since Steve started second line chemo on 8 October, we have been conscious that (if all went to plan) his treatment would include the Christmas/New Year period.  

As cycle 4 started and festive season approached, we became increasingly curious about how scans, check ups (and cycle 5 of treatment if agreed) would all be fitted in over the next couple of weeks, bearing in mind that the normal clinics would not operate over the holidays. Besides which, we wanted to make some festive arrangements of our own!

We explained our concerns when we met with the lead chemo nurse in hospital at the start of cycle 4 last Monday. We were told that Steve would receive an appointment for a scan before Christmas, and the results would be considered at his next check up which would be on 27 December. 

It seemed to us that this would be a bit tight for time with Christmas in between, knowing that it normally takes around two weeks for radiologists to assess scans. However, we were reassured that it was feasible so started making our own festive arrangements on that basis.

We were also told that if there had been a positive response to treatment and Steve was well enough, chemo session 5 would take place on 31 December.  New Years Eve. Not the best of timing, but you learn to live with things like that when fighting cancer.   

An early scan appointment was key to all these arrangements slotting neatly into place.  Liz the chemo nurse phoned last Tuesday to let us know that she had "walked" the scan request over to the radiology department to ensure that it would get booked in without delay.  We have been waiting for the scan appointment letter since then, but nothing had arrived by this morning.

Worried that the letter might have been delayed in the Christmas post and not wanting to miss his slot, Steve phoned this morning to check the date and time of his scan appointment.  It turns out that although the request has been with radiology for a week, the appointment had yet to be booked in. Doh!  However, a date was fixed there and then for his scan to take place this Thursday so - at last - the first part of the jigsaw is in place.

After sorting this out first thing this morning, Steve went off to the GP for his haemoglobin blood test.  While he was out, the phone rang. It was the consultant oncologist's secretary ringing to let Steve know that his scan had been arranged for Thursday (yes...we know...he has just arranged it himself....!) and that she had booked him in to see Dr T on 10 January.  

When Steve rang back to confirm that he had picked up the message, he was told that the delay between scan and check up was down to the Christmas/New Year break. There would not be enough time been 20th and 27th December for radiology to assess the scan and advise the consultant who will decide whether Steve will have two more cycles of treatment.  We could have told them that last week.  Come to think of it, we did say that last week!

But every cloud has a silver lining, or in this case several silver linings :-)  

We can spend a little more time with Jack and Katie over Christmas, instead of having to rush off for a hospital appointment on 27 December. And New Year's Eve will not be spent in the Day Centre having chemo drugs pumped into Steve's system. Best of all, Steve will have an extended break from treatment over the holidays, allowing us to enjoy the festivities even more and giving his body a chance to recover from the poison before the next cycle of treatment, if that goes ahead.  

These things have a way of working out, and this time it's worked out really well for us..... Ho!  Ho!  Ho!  

Sunday 16 December 2012

It's getting to feel a bit like Christmas... Chemo cycle 4, week 1

Its the end of week 1 of Steve's fourth cycle of pemetrexed (Alimta) and carboplatin, and so far there have been no nasty surprises.  In fact, things have gone pretty much as expected.  

Whilst they lasted, the anti-sickness drugs have worked well.  The steroid Dexamethasone has given Steve a boost, so much so that we managed to get out and about earlier in the week to get Christmas presents and a tree, printed the remainder of the Christmas cards and earlier today posted all those that will not be delivered by hand.

The mantlepiece is overflowing with cards from others and we have enjoyed catching up with news in the Christmas letters.  The tree is in place and festooned with lights, although the rest of the decorations can wait until tomorrow when we are feeling a bit fresher. There's even a new wreath on the front door.  All in all, it's beginning to feel a bit like Christmas!

Also as expected, as the steroid medication has reduced and finally stopped on Friday, Steve's energy levels have gone down too and there have been one or two occasions when he has felt nauseas.  However, nothing so bad as to justify taking metoclopramide pills which he hates!  

He's off to the GP tomorrow to have a haemoglobin blood test as the Hb levels were low at the start of the week, which may well be a sign of anaemia and the need for a blood transfusion.  We'll have to wait and see.  

We are still waiting for an appointment for a scan.  This is supposed to happen before Christmas so that the results are available for Steve's check up on 27 December. We are running out of days! If nothing comes in tomorrow's post, we'll have to phone the hospital to see what's happening.  

I really don't know why they don't offer people the choice of having appointments confirmed by e-mail, rather than sending two letters - one with the appointment and another as a reminder - by second class mail.  Not the greatest idea this time of the year!  Plus it would save the NHS both time and money.  Mavis, if you read this, perhaps it's something you can suggest at your next liaison meeting with your local PCT!  

Until we have the scan appointment, we are reluctant to arrange other things this week for fear of creating a clash. However, we are looking forward to having lunch with our friends tomorrow, postponed from last week because of my cold. I think we can be pretty confident that the appointment will not be for next Saturday or Sunday, so other arrangements for family get-togethers should be able to go ahead as planned.

Last but not least, today marks three and a half years since Steve was diagnosed with mesothelioma.  I remember wondering back then how many more Christmases we would have together.  Well, it's a little over a week until our fourth festive season since diagnosis, so Christmas wishes can come true!

Enjoy yourselves in this last week before the main festivities begin. I hope our Christmas cards will arrive in time, bringing with them our best wishes, love and thanks for all your support this year.  And big hugs to all the meso warriors, especially those going through treatment at the moment xxxxx.

Here are some more pictures from last week's Santa Run.  Enjoy!  

Monday 10 December 2012

Chemo Cycle 4 Day 1: This could be the last time....or may be not!

As expected, the results of Steve's bloods taken last Thursday were borderline again (low neutrophil count).  A second set of bloods was taken on arrival at the hospital this morning and we had to wait for the results before knowing whether cycle 4 of the treatment would go ahead today as planned.  

Interestingly, nurse Susan put the cannula in Steve's forearm, (rather than try to find a vein in the back of his hand which has been difficult in previous sessions) and there were no problems at all today - sorted!  

Whilst we were waiting for the results, Liz Flanagan the lead chemo nurse we met for the first time last Thursday came in to say hello and update us.  We have been working on the basis that Steve would have six cycles of treatment - that's what we had understood from the consultant oncologist. Liz explained that whilst four cycles of Alimta/carboplatin is the norm, Dr T likes his patients to have six cycles of treatment, if they can tolerate it and there is a positive response to the regime.  

A decision as to whether Steve would go on to have two further cycles of treatment would be made by the doctor based on a scan following chemo cycle 4, whenever that happened.  However, the good news is that Steve's X-ray taken last Thursday suggests that the reduction in pleural thickening seems to be continuing, so things are still going in the right direction!

The blood test results were back by 11.15 am.  The neutrophil count was back up again, so he was cleared for treatment.  However, Steve's haemoglobin level had fallen to its lowest yet, down from 10.1 on Thursday to 8.9 today. He was advised to have his blood tested again next week at the GP's surgery.  If it remains low, it's a sign of anaemia (which causes fatigue) and the doctor will be asked to arrange a blood transfusion to give him a boost. 

At 11.40, the pharmacist arrived with Steve's Emend anti-nausea tablets and a bottle of special mouth rinse Difflam which will numb the ulcers which have been causing him pain recently.  

Chemo 4 finally started at 12.50, with Alimta and carboplatin, topped tailed and interspersed by saline flushes, whilst Steve dozed off with his feet up in the reclining armchair.  Treatment was all over by 3 pm, we were free to go home and it was still daylight! 

Now we have to wait for the scan appointment so that the doctors can look in detail what effect of four cycles of chemotherapy have had on the mesothelioma before deciding whether Steve should have two more cycles of treatment.  

In theory, today's chemo session could be the last one of this regime. Because we were both assuming Steve would have six cycles of chemo, this has come as a bit of a surprise!  However, we shall wait and see what the scan results show and hear what the doctor has to say...

In the meantime, we are preparing ourselves for week 1 of cycle 4 and all the antiemetic pill-popping that involves, plus the steroids high and comedown, the tiredness and fuzzy head.....Roll on week 2!

For those who are interested in the science bit, this is how Steve's blood counts have changed during the four cycles of treatment to date:

Blood cell type   Cycle No      1            2             3          4

Haemoglobin (Hb)                15.6     12.9      11.2     8.9
carries oxygen in red blood cells

White blood cells (Wbc)          9.0      6.4        5.3      4.8
prevent and fight infection

Platelets (Plts)                      288      518      471      312
stop bleeding and form blood clots

Neutrophils                           8.1      5.3       3.8       3.6
white blood cells which kill bacteria

For comparison, typical "normal" ranges of different blood cells are

Hb                                         13.0-18 cells per microlitre

Wbc                                        3.8-10.8 cells per microlitre

Platelets                                130-400 cells per microlitre

Neutrophils                              1.5-7.8  cells per microlitre                     

Sunday 9 December 2012

a week of anticlimaxes and then.....

We had high hopes for making the most of week three of Steve's third cycle of chemotherapy.  Steve's appetite had returned, the worst of the fatigue was past and no infections to deal with.  

The week started well enough; the Advent calendar was up on the mantlepiece; Christmas cards had begun to arrive; the Meso warriors Secret Santa present was posted and we managed to do some Christmas shopping on Monday.

On Tuesday we traveled to Bristol to be with Steve's mum as she had her second "assessment" with the social worker - an interview which would determine whether she would stay in the care home or decide to return to the family house, to try to live independently.  To our relief, she had not changed her mind about continuing to live in the care home, where she is happy, safe and well looked after 24 hours a day.  We also visited the old house before and after this event, to pick up post and have a quick check round, knowing that we are unlikely to see it again in 2012.

It was a long and exhausting day with all the to-ing and fro-ing.  The sun was really low in the sky, which would have made it very difficult to see when driving in the normal course of events.  However, Steve's eyes had become very sensitive to light, so he had double trouble to deal with. 

The long day took its toll on both of us. By Wednesday, Steve was feeling very tired and "run down" for the want of a better phrase. His eyes were still sensitive to bright light. He was also having problems with mouth ulcers and swollen lips.  Not good.  And not expected in week 3 of the three week cycle, when things are usually on the up...

Thursday was Steve's X-ray and check up day at hospital. After cycle 2, we had been told by the doctor that his X-ray appeared to show that the pleural thickening had decreased a little.  We were both hoping to hear that this positive response to treatment had continued during cycle 3, which would have given us a big boost.  

On the day, Steve had his X-ray as usual.  However, rather than seeing a doctor in the clinic afterwards to discuss the results as usually happens, we were greeted by Liz Flanagan, who introduced herself as the lead chemotherapy nurse specialist.  She would be doing Steve's assessment instead of the doctor.  

We spent a long time talking about how Steve was managing chemo and the side effects, picking up some useful hints in this process.  Liz recommended the adult only version of Bonjela for his sore mouth.  With the festive season fast approaching, she also mentioned that some people on chemo enjoyed the taste of Pernod, even if they had gone off other forms of alcohol.   

However, she didn't examine Steve physically, or listen to his chest which has happened on every other visit.  And she had not seen his X-ray, so couldn't tell us whether the chemo was having an effect.  Apparently, all the X-rays are looked at with the doctors at the end of clinic and she would get in touch with us if there was a problem.  Nevertheless, she could see no reason why Steve could not go forward on to cycle 4 of chemo next week, assuming his blood test results were OK.  

After we left the hospital, we discussed what happened. Both of us had felt it was a bit of a non-event in many ways. We had came out none the wiser about Steve's progress than when we went in.  All a bit of an anticlimax, really....And not the boost we had been hoping for.  By Thursday evening, I had started sneezing again - yet another cold, only two weeks since the last one.  I think we were both run down....

Friday was a very quiet day.  Although there was lots to do, neither of us had much energy.  Steve had to go to the doctor to have his bloods taken for testing, but otherwise it was a restful day.  Steve's eyes were behaving themselves at last, but the mouth sores continued.  

By mutual agreement, we decided to cancel a lunch date with our friends Jon and Sally, which we had been looking forward to very much.  However, we weren't really up to it and it would have been unfair to pass on our germs to friends or other diners.  So what should have been a happy social event tuned into another anticlimax and an early night instead....

I think that having a restful day was beneficial for both of us.  We felt better on Saturday morning.  We took the pressure off ourselves by deciding not to take part in a local exhibition which we had hoped to do - another anticlimax, but a good decision in the circumstances.  This gave us a little bit of extra time to sort out the house and do some food preparation before daughter Katie and her partner Ed arrived at lunchtime for the weekend.

So after a week of anticlimaxes of one sort or another, and both of us feeling low, at last things started to look up by the weekend.  We caught up with Katie and Ed's news over lunch and an evening meal at home.  I had enough energy to get up early this morning to photograph the Santa Run, a two mile race to raise funds for Helen and Douglas House, Oxford's hospices for children and young people.  And jolly entertaining it was too - 1,500 Santas of all ages and abilities running, walking, being pushed or carried around the city, all dressed in bright red Santa suits - very cheerful!

We had lunch out with Katie and Ed at the Punter,our friendly local gastro pub. Then all too soon, it was time to say our goodbyes and wave them off as they set out for the station to return to London.  

Hopefully, the big meals Steve has eaten over the last few days will help him regain some weight, which has still been dropping off slowly but surely in recent months.  Whether he is well enough to have chemo 4 tomorrow, we will just have to wait and see.  

I don't think either of us would be surprised if it is postponed a week this time.  But you never know....He has started taking the steroids to help him get through the first week of treatment, if it does go ahead and I shall pack a bag of books, the weekend papers, pens and papers to while away the hours in hospital, if his bloods are OK to continue treatment.

On the bright side, as this is the last day of chemo cycle 3, Steve is officially half way through this regime of six cycles of chemotherapy.  That's something worth cheering about! Wooooo Hoooooooo :-)

And well done to all the Santas!!!

Santas warm up

Santas waiting for the off!

Under the rainbow to start the race

Run Santa run

Santa "Walkies" time

Elves give out goody bags at the end

All in a good cause:
Running in memory of Katie Marie

Friday 30 November 2012

The tide is last!

If you have read the blog recently, you will be aware that our part of Oxford has been on a flood warning for the last five days.  We watched as the water level in the stream at the end of the street rose from 56.5m last Sunday and the park went under water.

Sunday 25 November 2012
By Tuesday morning, the flood gauge pole was completely submerged, with the water level rising to over 57 m.  

Tuesday 27 November 2012
The pumps were working through the night in the cul-de-sac where we rent a garage, but the water still got in under the door.  Oh dear! 

Residents in the adjoining block of flats were marooned, watching as the Fire and Rescue Service tried to pump out water from the parking court.

We are still on a flood warning.  The road to the garage is still closed, as is nearby Binsey Lane, leaving Binsey village residents cut off by car.  However, the Environment Agency says that although river levels are still high in the Thames, especially in the Osney Lock area near us, water levels are stable and falling very slowly.  The river remains out in the flood plain and will stay that way for several more days.  

Although our park is still under water, the level in the stream has dropped to 56.9m - a noticeable reduction overnight - as the flood water makes its way downstream towards Reading.  

Ironically, we followed the flood down to Reading today to collect an oven which daughter Katie bought recently for the new flat in London which she is in the process of buying with her partner.  It's sitting in our dining room at the moment, waiting until the purchase of the flat has been completed.

The good news is that as the flood water recedes, Steve's appetite has returned and he is eating well and enjoying his food, in spite of the chemo drugs affecting his taste buds. He is experimenting with different drinks - ginger beer, pineapple juice, traditional lemonade, a variety of ciders as well as Campari, as sharp acidic fruit flavours seem to cut through the nasty chemo taste.  He has also added juicy green grapes to the list of things he likes to to nibble in between meals.  

With no infections this time round to throw him off course, the third cycle of chemo has been much more manageable than cycles 1 and 2.  All being well, we can look forward to the remaining nine days of this cycle of treatment.  We are planning another trip to Bristol next week to visit his mum, who has now settled so well into her care home that she is now talking about living there long term, to the great relief of everyone in the family.  

For many years now, the wider Wride family has gathered at his mother's house in Bristol for a big get together the weekend before Christmas.  It will be different this year, but in a good way - knowing that she is safe and warm and looked after 24/7.  

We have started to think about our Christmas, but will wait to see whether Steve's next cycle of chemo goes ahead on schedule.  Only then will we know at which point he will be in the 21 day chemo cycle on Christmas Eve, Christmas Day and Boxing Day and that will give us some idea of how he might be feeling at the height of the festive season.

However, the first Christmas card has arrived, all the way from Texas, USA - thanks Sue and Curtis!  We will be getting into the festive spirit this weekend, putting the Advent Calendar on the mantlepiece; posting the meso warriors Secret Santa present; working on this year's Christmas card and writing the yearly letter to those we don't see very often.  

Happy St Andrews Day if you are in Scotland. I can hardly believe it will be the first day of December tomorrow....

Tuesday 27 November 2012

High tide

We have been keeping a close eye on the weather and the water for the last 24 hours.  On the local news on TV at lunchtime yesterday, there were shots of sand bags being stacked and water being pumped out somewhere in Oxford. That looks familiar we thought.....Oh no!  That's just a few streets away, where we rent a garage - not to park the car but for overflow domestic storage (having lost space when the loft was converted).  

Most of the things we store in the garage are only needed occasionally, like spare picture frames, wrapping material, and a card stand used when we have exhibitions.  Some of it is there because we don't need it, but it might be useful one day, like lego, toys and a bike from when the children were little.  Some of it....well I wonder why we have kept it at all (things that fall into the "bits of string too small to use" category!)  

However, we are using the garage to store an almost new, rather expensive mattress belonging to daughter Katie until she moves into her new flat. Can't let that get wet! Boots on and out of the door quickly. 

Luckily, the pumps were doing their work, the garage was still dry and we managed to lift the mattress up on to two empty boxes, so that it was about a foot off the ground. Hopefully enough to keep it dry if the water does get in....

....The flood waters continued to rise through the rest of the day.  By teatime yesterday, the water had risen to 56.8 on flood gauge at the end of the street.  By bedtime, only the red number 57 at the top was visible.  This morning, the post is fully submerged, and the there is hardly any space between the underside of the footbridge and the water level of the stream/park that is now a lake.  

This picture was taken on Sunday.
Today, the flood marker is submerged, with water lapping over the top of the pole!

The main road into Oxford from the south is closed due to flooding, as parts of the ring road. The flood defenses have gone up around Osney Island.  Trains are still running, but only at 5 mph because the tracks are only 35 mm above water level.  Fire and Rescue are pumping out a flat development not far from us. The homes are OK, but the car park is underwater and residents are marooned.  

We revisited the garage and it is clear from the tidemark on boxes that water gas got in overnight, but most of it has drained away now. The mattress survived and has been raised again on yet another set of boxes.  Hopefully that will keep it high and dry if the tide continues to rise...

The big debate we are having now is to sand bag or not to sand bag?  I would rather play it safe and get prepared now. Steve would rather wait for the time being.  Hey ho!  At least it's taken our minds off mesothelioma and chemotherapy for a change :-)  

All rather dramatic!  I will add some pictures later...

Monday 26 November 2012

Flood warning!

After yesterday's "up" we have two potential "downs".

Yesterday I started sneezing.  I know this sounds silly, but I thought it might have been a reaction to getting up close and personal with 100-150 years old textiles at the Ashmolean exhibition.  However, the sneezing and sore eyes carried on last night.  This morning, there's no escaping the fact that I have a streaming cold.  Just a the point in the cycle when Steve is at his most vulnerable to infection.  I just hope that all the vitamin C he's been taking will help him keep the cold germs at bay.  Oh dear.  What timing....

We also have another potential problem that is completely out of our control.  The phone rang as we were having breakfast, and I picked it up to hear a lady from the Environment Agency announcing a flood warning..."Flooding is expected.....Immediate action is required.....Your safety is at risk....River levels on the Thames are very high and are still rising...The river will continue to rise over the next few days.  Property flooding can be expected as a result. More rain is forecast...Take your family, pets and animals to a safe place...." 

I've walked down to the end of the street.  The small green patch at the entrance to the park is now much smaller as the water has risen overnight, and the level measured on the flood gauge is now 56.8m (up from 56.6m yesterday afternoon and 56.5 yesterday morning).  

We are not panicking yet.  The flood gauge has been completely submerged before now and our street has remained dry, although others nearby have gone under water.  However, we are staying alert, keeping an eye on things, and are ready to move the irreplaceable stuff (like photos, the fire-proof box containing passports, house deeds and wills, and the music collection) upstairs along with supplies of food, drink and medicines if necessary.  I do hope not!

more ups and downs - chemo 3, week 1

During chemo cycle 1, Steve came down with an unknown infection and ended up in hospital at the end of the first week.  Things looked up a bit on cycle 2, although the end of week 1 was marked by a getting things out of his system by throwing up his evening meal.  The first week of cycle 3 has been quite quiet by comparison...

Taking Emend anti-sickness tablets in addition to dexamethasone, ondanestron and metoclopramide has helped keep nausea at bay.  Five days of steroids has given him a boost, although it makes him edgy and the come down as the dose reduces is very noticeable.  Ironically, these days even the thought of metoclopramide makes him sick, so he was determined not to take any more once he reached the stage on the drug chart where it says to take only "as required".

However, the combined effect of coming off steroids and trying to limit the intake of other anti-sickness meds is not conducive to a good mood.  As Friday wore on, Steve became increasingly irritable, down-hearted and fed up with everyone and everything. Another of those occasions when I wished I had a magic wand to help him (and me) get through the hard times....

Saturday was a quiet, relaxing day to help him get his strength back - not that we would have gone out in the high winds and driving rain in any event.  Although he was still feeling  rather vulnerable, he got by without any metoclopramide, nibbling a ginger snap biscuit whenever he felt a bit wobbly.

Yesterday we were lured out by blue skies and bright sunshine. We took a leisurely walk into town, stopping on the way to look at the park at the end of our street.  

the entrance to the park from our street

car park under water - golfers beware!

Because of the recent heavy rains, it's now a lake complete with gulls and swans - far too deep for kids to paddle or dogs to walk. Let's hope it doesn't come up much higher, or there will be water at the bottom of our garden like there was when this part of Oxford flooded in 2007. 

play area under water

However the water had risen noticeably in less than four hours.....

11 am when we left home: 56.5

3 pm when we returned home: 56.6

While we were in town, we enjoyed two exhibitions at the Ashmolean Museum - one to celebrate the bi-centenary of Edward Lear, who was an amazing illustrator of natural history and landscape painter as well as writing and illustrating The Owl and the Pussycat and other nonsense verse.  After lunch we had another short walk, then back to the Ashmo to see Threads of Gold and Silk, an exhibition of ornamental textiles from Japan - stunningly beautiful, delicate work.  

I think we both feel much better for getting out of the house and enjoying some sunshine and fresh air.  Sometimes a change of scene helps put things in perspective.  Although Steve hasn't sailed through chemo like some lucky souls, at least he hasn't has an extreme reaction like other meso warriors, most recently Jan who is on the same regime as Steve, just a short way behind.  Take care, Jan - sending lots of love and positive vibes :-)  

He is also still very much here, almost three and a half years since diagnosis.  With more meso-related deaths reported in recent weeks, we truly appreciate how lucky we are compared with so many others.  

We are even beginning to look forward to Christmas, although we can't make any firm plans at the moment. It all depends on how Steve is feeling.  However, the Meso Warriors Secret Santa present is sorted and sits ready to be wrapped up and posted.  I don't think we've ever been this organised before.  First present in the bag and it's not yet December!  

Sunday 25 November 2012

Clinical Trials in the UK

When Steve was first diagnosed with mesothelioma, finding out about clinical trials recruiting in the UK was a bit hit and miss.  You had to hunt them down on various websites - Cancer UK: Mesothelioma UK; Macmillan; National Cancer Research Network; United Kingdom Coordinating Committee for Cancer Research; European Organisation for Research and Treatment of Cancer; Your Treatment Choices.  

However, last month the UK Clinical Trials Gateway website was relaunched, with a promise that it would improve information available to patients, clinicians and the public about clinical trials.  You can even get versions for the iPhone, iPad and Android devices.  

To visit the website, click here

Monday 19 November 2012

long and slow....but we got there in the end - chemo 3, day 1

Back in 2009 when Steve was having his first line chemo on the Velcade/cisplatin drug trial, his blood counts were so low before the start of chemo cycle 3 that treatment was postponed not one, but two weeks and the dosage subsequently reduced to help his body cope with the toxins.  

This time round, we were prepared for - even half expecting - the same thing to happen again.  It came as no surprise therefore when Steve phoned the hospital first thing to check whether he was clear to go, to be told that his blood counts from Friday were on the low side and would have to be tested again in the day centre before they would take the chemo off "hold".  

Alimta/pemetrexed is expensive stuff with a limited shelf life, so it's not made up until they are sure the patient is well enough to be given another dose.  Until then, it's ordered from the pharmacy but kept "on hold" until the green light is given for treatment.  

So rather than starting chemo at 10.00 am as planned, it was bloods first and the usual problem of getting a cannula in to vein, even after applying a heat pack to Steve's arm to warm it up.  

Part of the problem is that arthritis has fused Steve's wrists. Great for an extra bit of torque on a screwdriver, but not much help when asked to bend/flex the joint to get a straight line in!  

Ella the staff nurse managed to get a line in on the second attempt, bloods were taken followed by a saline flush, then we were told it would be about an hour and a half before the results were back.  Plenty of time for the pharmacist to give Steve his new set of anti-sickness meds, for the next set of tablets to be taken at lunchtime and for the staff to run through the checklist of side effects to see how he had been feeling on cycle 2.  

It was not until around 1.30 pm that chemo actually started, after a small problem when the pump didn't work properly. Alimta in first, followed by a saline flush, then (after an obligatory 30 minute wait) the carboplatin at 2.20 pm. That should have taken an hour or so, but the cannula was so precarious that Steve didn't have to move very much for the line to get "occluded" and the pump to stop.....which it did quite frequently, when he turned the page of a newspaper, drank a cup of tea, eat a biscuit and had a comfort break. When the pump stops, the bleeper sounds, and one of the nurses has to come and sort it out - assuming someone is available......  

At one point, at least three bleepers were going off in unison - quite tuneful as it happens.  I'm surprised Steve Reich hasn't composed a symphony for "Alaris" (although we were told by a fellow patient that someone had record the sound and used it as his alarm call - very effective!)

If you have never been in a hospital chemo lounge, you may be curious as to what it looks like. In Oxford, there are two HUGE rooms side by side, with nursing stations, offices and wcs in the middle.  The walls are lined with "easy chairs" for patients (which we discovered today had adjustable backs and leg rests) with small tables in between for drinks, magazines and cleansing gel.  

Each chair has its on pump on a wheeled stand which plugs into a socket behind the chairs, but can be unplugged and wheeled to the loo when necessary. There are also some bed bays. Oxygen is available to all, and I noticed two people using it today for the first time.  Patients are seated so that they face towards the nursing station, or their own visitors who sit on upright chairs opposite them. 

I didn't count them all, but there appear to be about eight bays around the outside of the chemo lounges, each with 6 or so chairs or beds, so anything up to 40-50 patients can be treated at anyone time. It's a bit of a production line in that respect - very different to the single room or bed in a four bay ward upstairs where Steve was treated when he was on the drug trail.

Back to today.....with all the interruptions, it was nearly 4 o'clock by the time the full dose of carboplatin had been pumped in, topped off by one last saline flush.  We were finally released into the wild at 4.10 pm, just in time to get caught up in Oxford's peak hour traffic.  Hey ho!  Still, after a long, slow and surprisingly tiring day just sitting around reading and dozing, the third dose of chemo is done and dusted and cycle three of six cycles has begun.  Getting on for half way there!  

Over the next week or so I imagine that life will be structure around anti-emetic pill popping times and afternoon naps, interspersed with manic steroid moments, lucid moments, longer periods of fuzzy-headedness which Steve hates, lots of eating little and often and I hope not too much nausea, if any.  All being well, life will be on a more even keel in week 2 of the cycle, but we will just have to wait and see.  

In the meantime, we are keeping our fingers crossed for Debbie who gets her scan results this week and others going through the same horrible waiting period; for Jan who is going through the same treatment as Steve and for everyone else on chemo for what ever reason, and those making the most of life between treatments.  Fight on warriors and stay positive :-)