The tide is turning....at 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....

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...

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!  

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

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 :-)

Meso-bloods-meso Part 2

Meso 1

Today it is three years and five months since Steve was diagnosed with mesothelioma.  When I started writing the blog, I would do a review on the 16th day of every month, partly because I had no idea how long the blog would last and partly because things seemed to be happening - and changing - so quickly. I have long since stopped the monthly review - don't want to bore you!  

Suffice it to say that nearly three and a half years since diagnosis and Steve is still going strong.  Second line chemo which started in October knocks him sideways at the start of each three weekly cycle, but so far he has been able to get back up to speed ready for the start of the next cycle.  The good news is that although the chemo knocks Steve sideways, it also seems to be knocking the meso backwards.  As long as it keeps going in the right direction, I think that Steve will want to stay on his chemo bike until he's completed all six laps of the current circuit!

Bloods 1
As I write, Steve is setting off to the GP to get his "bloods" taken for testing to see if he is fit enough to go on to the next cycle of alimta/carboplatin.  I'm sure he will check to see if they take the right number of samples in the correct colour phials after one actual and one potential hiccup before the start of cycles 1 and 2. He will also have his second vitamin B12 injection of this regime (the marmite jab as we call it!) to help his body deal with the side effects of treatment.

Meso 2
All being well, he will start the next chemo cycle on Monday and go into the meso boxing ring for round 3 with Leo....

Let's hope his neutrophil levels are back up to normal today after the lingering sniffle so that he doesn't need to have Bloods 2 done again on Monday morning it check that all is well before the start of treatment - it would be so nice if this next cycle of chemo went off without any hitches!

We will be making the most of this last weekend before round 3 of the meso fight back to visit family, including Steve's mum now (in her new care home) whom we last saw a few days before he started chemotherapy back in early October.  

Enjoy the weekend with your families and love ones!