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 :-)

Friday 16 November 2012

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!

Thursday 15 November 2012

Meso-bloods-meso-Part 1

As the end of cycle two of Steve's alimta/carboplatin regime approaches, we feel a bit like the ball in a ping-pong match, ping-ponging between meso-related stuff and blood-related stuff....

Warning!  This is a long blog, so if you want news of Steve's check up go straight to "Meso 2" ....but please read "Meso 1" if you have time, especially if you are new to this disease - there is some useful information there!

Meso 1
Yesterday we attended the inaugural meeting of the first ever support group set up especially for people with mesothelioma and their carers in the Oxford/Thames Valley area.  It was organised by Melanie one of the specialist lung cancer and mesothelioma nurses at the Churchill Hospital Cancer Centre where Steve receives treatment.  The first thing we noticed on entering the room was how many people there were!  Never having met anyone here in this area with meso, I've always assumed that there are only one or maybe two others. How wrong can you be?

Two speakers talked to us after lunch, including Liz Darlison Nurse Consultant with Mesothelioma UK - a familiar name and face to us as she organises the annual national Meso Patients and Carers Day. Liz talked to us about the development, work and aspirations of her charity. To find out more more about Mesothelioma UK, click here .

The other speaker was Dr Rahman, a consultant and senior lecturer at the Oxford Centre for Respiratory Medicine, which is based at the Churchill Hospital campus.  He talked about new directions in mesothelioma treatment and care, highlighting at the start of his talk the close correlation in the UK between asbestos imports and the number of people being diagnosed annually with mesothelioma - the two graph patterns are an almost perfect match, but time-shifted forward 30 years or so because of the long latency period of the disease.  

As asbestos imports in the UK have been banned now for some years, the number of mesothelioma cases is expected to decline in a similar way after peaking in 2020.  But it's a different picture in other parts of the world, especially places like India and China which currently import far more asbestos that the UK ever did, but have far less stringent health and safety regimes.  So....a BIG international problem for the future, which is why (a) asbestos exports should be banned now - and that includes you, Canada and (b) more resources need to be put into research for a cure because this disease will be getting worse worldwide for many years to come.

Dr Rahman then went on to talk about the four main areas of treatment:  

(a) Fluid drainage and management

  • Pleurodesis (the operation which drains fluid from the pleural cavity and then sticks the pleura back together with surgical "talc") works for 7/10 patients.  If there is no recurrence of fluid within three months of the operation, then it's unlikely to happen again - reassuring news for us as Steve had pleurodesis in 2009 and has been OK since then. 
  • In future it seems like more patients will be offered an in-dwelling pleural catheter, which they can use at home to self-drain without an operation - research suggests this option is every bit as effective as pleurodesis.
  • Agents other than surgical talc are also being tested as a means to stick the pleura back together after fluid has been drained 
  • Studies are also underway to develop pills and injections designed to "turn off the tap" and stop fluid forming in the pleural cavity in the first place

(b) Oncology treatment - including chemotherapy and radiotherapy

  • Over the last 5-6 years, chemotherapy has been much more effective at improving both survival rates and quality of life for people with mesothelioma and further progress is expected in the next 3-4 years
  • second line chemotherapy is now being given more often to people who are keen to continue the fight back
  • new chemo agents are being developed and tested in clinical trials, including immunotherapy (4 trials open in the UK at present); agents which target only mesothelioma cells not healthy cells (14 targets in the early stages of research at present); gene therapy, which uses especially modified viruses to get genetic material into meso cells and "turn them off" so they stop growing - currently being pioneered in Pennsylvania, USA
  • Working with DNA and enzymes
(c) Surgery - 
  • the big operation - extrapleural pneumonectomy (EPP) - is out of favour - research indicates that the overall survival rates and quality of life is actually worse for most people who have EPP - generally they don't live as long and their quality of life is worse than patients who don't have EPP
  • the smaller operation - pleurectomy/decortication ie lung-sparing surgery using video-assisted thoracoscopy (VATS) is more effective and is less intrusive for the patient.  This procedure is currently carried out in London, Leicester and Oxford.  It is likely to increase in importance as a means of de-bulking tumours to help breathlessness, especially when used in conjunction with chemotherapy and radiotherapy (tri-modal treatment)
(d) Active symptom control
  • This encompasses regular follow ups; structured assessments; the rapid involvement of specialists when required and parallel quality nursing care.  It can also include the use of medication such as steroids, painkillers and medication for the lung/airways, together with radiotherapy targeted at particular areas to reduce pain
  • Based on lung cancer research, best supportive care improves a patient's quality of life from the outset. People getting best supportive care also live longer :-)  Make sure you get it!
Dr Rahman concluded by saying that the key is patient-centred care - we all have different needs.  Get what is right for/works for you!  Hospitals tend to be good at this whilst patients are undergoing chemotherapy, but the equivalent level of support needs to be in place when chemo stops, or if it doesn't start.

A couple of interesting things came out of the Q & A session at the end
  • X-rays v CT scans - Question: If CT scans give a better picture, why are they not used more often instead of X-rays (which are used in Oxford)? Answer: radiation and money - an x-ray is equivalent to the amount of radiation you get from two days exposure to the sun at the seaside. Radiation from a CT scan is 100 times stronger.  It is also a lot more expensive. So in Oxford it is used for the initial diagnosis and thereafter only if justified ie if treatment would be likely to change as a result of finding something on the scan.
  • Is mesothelioma "rare"?  Yes, but it's more common that melanoma (skin cancer) and cervical cancer, both of which have a higher public profile and awareness - we need to spread the word, if we want to attract more interest from researchers and funding bodies!
The speakers were well received and the group has decided to meet on a regular monthly basis from late January onwards, with lunch followed by a key speaker and time to share experiences, including a break out session for carers, if needed.  

Blood 1
After a long afternoon of meso-related stuff, it was time for bloods.  Not Steve for a change - me giving blood for only the second time this year due to reasons beyond my control.  

I wasn't even sure if they would take my blood this time, as I had to put ticks in quite a few of the red boxes on the screening questionnaire - a recent cold; a flu jab within the last 8 weeks; medical investigations including a scan and biopsy; travel abroad since last donation - Rome, Marrakech, France, Channel Islands....and what do you anwser to the question "have you had sex with someone who has had injections?" when your partner is on chemotherapy and regularly gets injected with all sorts of stuff?  

As it turned out none of these red box ticks were so serious that I couldn't give blood.  What put the proverbial spanner in the worker was the donation nurse not getting the needle in properly, so even after pumping hard for what seemed like ages, the bag was only partly full and the blood had started clotting.  In the end, she gave up and took it out. I'm waiting for a big bruise to appear on my arm!  But at least I tried....

Meso 2
Hard on the heels of yesterday's meso meeting and abortive blood doning session, we were back in hospital again today for more meso-related stuff - Steve's X-ray and check up at the end of chemo cycle 2.  

Setting out in a hurry this morning because we thought we were late, we didn't check the appointment time.  After having to play hunt the parking space again, Steve rushed in to have his X-ray taken before he looked at the appointment card and noticed that it was for 11.40, rather than 11 am as we thought.  Rather than being late, we were well early, so time for a coffee and toasted teacake before heading back to the day clinic on time, only to find we arrived that the chest clinic was running at least an hour late....

It was approaching one o'clock when we finally saw a doctor, but it was worth the wait because the news was good!  Having examined today's X-ray and compared it carefully with the last pre-chemo version, the doctor said that it looked like the pleural thickening had reduced. Difficult to be precise, but definitely going in the right direction after just two cycles of treatment!  

Although Steve has lost more weight (about 1.3 kilos/3 llbs) this appears to be down to changes in our diet in response to the taste-altering side effects of chemo (we are eating more protein, less carbohydrate and there has been a significant reduction in our alcohol intake). In all other respects, Steve appears well in spite of having the remnants of a it's full steam ahead and carry on knocking Leo back even further!

Part 2 of meso - bloods - meso starts tomorrow when will be three years and five months since Steve was first diagnosed, and time to get his bloods done again to check that he's OK to start cycle 3 of chemotherapy next Monday for the next stage in his fight against mesothelioma......

Have a good weekend! 

I'm sure we will after today's encouraging news :-)

Sunday 11 November 2012

coming out of purdah - chemo cycle 2, days 9 - 14

After his bad experience of fighting an infection whilst having his first cycle of alimta/pemetrexed and carboplatin chemotherapy, Steve has been very anxious about the risk of picking up an infection on cycle 2. He has felt so vulnerable that he has been reluctant to leave the house this last week for fear of coming into contact with a person infected by some bug or another.  

However, Steve had to brave the outside world on Wednesday to collect his folic acid prescription from the local chemist, as it wasn't ready when I tried to pick it up on Tuesday before leaving for Guernsey on a work-related trip. Although he had felt sorry for himself on Wednesday, by the time I returned home on Thursday evening, Steve was feeling decidedly more chipper, even though I had brought a cold virus back with me.    

Having been exposed to an infection in spite of all attempts to stay "clean", Steve decided to emerge from self-imposed purdah and join me on a trip to London yesterday, by which time my cold was in retreat.  We met up with daughter Katie and partner Ed and accompanied them on a second viewing of a flat they had looked at earlier in the week. The viewing went well and over a pub lunch washed down by mulled cider, we hatched plans to make an offer. We'll have to wait until Monday to hear the vendor's reaction, but at least the first step has been taken now and the process of helping them find a new home has shifted up a gear.

Steve's mum has also taken a step forward on the home front, having been discharged from hospital last Monday and moved into a care home to "convalesce".  Like all changes, it will take her a while to adjust but we are hoping that she will soon settle down and are looking forward to visiting her in Bristol next weekend, all being well.

In the meantime, a busy week lies ahead of us.  I will finishing my work from Guernsey on Monday and Tuesday.  We are both going to the inaugural meeting of the Oxford mesothelioma support group on Wednesday, and I am due to give blood later that day.  

Thursday is Steve's hospital day, with an appointment for an X-ray first thing to assess whether two cycles of chemo is having an effect on the mesothelioma and to talk to the oncologist about the results and how Steve is getting on with the new anti-sickness drugs.  Fingers crossed it will be good news, or at least not bad news. Assuming it's worth carrying on with treatment, Steve will have his bloods done at the GP surgery on Friday and we can then enjoy a last weekend feeling relatively good before chemo cycle 3 starts on Monday 19 November.

While I have been working way from home, meso warriors Mavis, Debbie and Jan supported by Linda Reinstein of the ADAO in the USA and many others worldwide have been busy challenging Roger Helmer MEP who thinks that white asbestos (chrysotile) does not pose a measurable health risk.  What a stupid, ignorant man. The World Health Organisation acknowledges that ALL forms of asbestos are carcinogenic to humans.  There is no safe level of asbestos exposure. Ask the families and loved ones of Denise and Jo who both lost their lives to mesothelioma this week.  

Our paths nearly crossed with Denise at the Mesothelioma Patients and Carers Day in London on 6 October.  We didn't attend this event because Steve's chemo started the following Monday and we wanted to spend that weekend with family and prepare ourselves mentally and emotionally for the journey ahead. It's shocking to think that Denise was only diagnosed in April this year, was well enough to travel to London in early October and is now dead just a month later....a horrible reminder of just how aggressive this cancer can be when it takes off.  Our hearts go out to her family and friends, as well as the loved ones of other mesothelioma victims whose life journeys ended this week.

The meso bloggers have been busy on other fronts too!  Jan has thrown down the challenge to researchers, and those who fund research, to find a way to cure this avoidable disease and increase the number and range of clinical trials available in the UK (which is pitifully small compared to the USA). Why should your ability to take part in a clinical trial depend on where you live?  Cancer Research UK says that it is promoting more research into harder to treat cancers (including lung cancers) with the poorest outcomes. Whilst survival rates for other cancers have been steadily improving over the years, survival rates for these cancers are still low.  Cancer Research UK aim to improve this, but when will we see the benefits for mesothelioma sufferers?

As Amanda pointed out in her blog, more people die each year in the UK as a result of mesothelioma than are killed in road traffic accidents - one death every five hours in fact. The numbers have yet to peak. This is now expected to happen in 2016.  However, although workplace exposure is less likely these days, more people are being exposed to asbestos dust through DIY projects in buildings constructed or refurbished in the 50s, 60s and 70s when asbestos was widely used for insulation and in other products such as floor tiles, ceiling tiles and coatings, asbestos cement roofing slates, lagging heating pipes and systems, including many used in system-built schools of the period.  

No longer an "old man's" disease, younger men and many more women of all ages are being diagnosed as a result of secondary exposure to asbestos dust being brought home on clothes of loved ones, or directly though employment - exposed in the place of work by people (like Roger Helmer MEP) who claim to believe that certain types of asbestos do not pose a health risk, or those who are well aware of the risks, but are not prepared to shoulder the responsibility of protecting their employees from such risks.  Shame on you.  

Asbestos in schools continues to pose a threat to the youngest members of our society and those who teach or provide support in schools.  Few local authorities have the resources to identify and remove all asbestos in educational premises, but unless this is done are we not creating more innocent victims for the future?  

Meanwhile Steve's battle goes on as he enters the last week of chemo cycle 2.  Come back later in the week to find out what effect this treatment has been having on Leo.  The fight is well and truly on!

Monday 5 November 2012

Getting it out of the system: chemo cycle 2, days 5-8

It's now a week since Steve had his second dose of pemetrexed/alimta and carboplatin.  It's been a bit of a roller coaster ride....The anti-sickness medication worked well on days 1-5, although messed with Steve's head. He took his last steroid dexamethasone tablet on Friday, so I was hoping that things would settle down a bit on Saturday.....Some hope!

As the day wore on, Steve seemed to get more and more agitated. The feelings of nausea welled up again so he continued popping metoclopramide tablets "as required" and turned into Mr Grumpy as a result.

He was acting like the proverbial bear with a sore head and seemed determined to find fault with anything and everything, including my choice of pizza topping for the evening meal - spicy chicken and peppers. On reflection, that might have been a blessing in disguise....Come bedtime, the feelings of nausea turned into sickness. The last metoclopramide tablets of the day went down the drain along with the jerk chicken and jalapeno peppers, and after that he felt much better.  I guess that's one way of clearing out the system.  It certainly seemed to work for Steve.  

He's managed without any anti-sickness tablets since then, and as long as we keep him topped up with food at regular intervals, the feelings of nausea have been mild and few and far between.  Better still, Mr Grumpy has gone away and Steve is by and large back to "normal" although he still feels tired and continues to take afternoon naps.

So today, the start of week 2 of cycle 2, things at last appear to be back on a more even keel....or perhaps I shouldn't say that for fear of tempting fate. We are sitting tight waiting to hear from other members of the family about the transfer of Steve's mum out of hospital and into a care home, which was supposed to happen this morning.  No news yet....

We are also still waiting to hear from Bristol Social Services about her care/support plan to put in place the services she needs to meet her needs.  Another "no news yet"....

If you are having fireworks tonight, wrap up well, stay safe and enjoy :-) 

Sending positive thoughts and hugs to Jan who has just begun the first cycle of her third chemo regime, and is already suffering with the side effects.

Thursday 1 November 2012

Chemo cycle 2, days 1 - 4

Testing Testing

After Steve's experience on cycle 1 of his chemo regime when there was a mix up between the hospital and the GP about which bloods to take, he was extra careful last Friday when having his bloods taken prior to chemo cycle 2.  As it happens, there was another potential problem second time round. However, the practice nurse noticed that one of the boxes on the blood sample envelope hadn't been ticked when it should have been.  Rather than mess about, she simply ticked the box and took the sample, so everything was in order and would be ready to go on Monday morning.  

Well, almost.....

When Steve phoned the hospital before setting out on Monday morning to check that all was well, he was told that his neutrophil test levels were borderline, suggesting that he may not have fully recovered from the infection that had laid him so low on cycle 1.  He would need to have the tests done again on arrival at hospital to see whether there had been an improvement over the weekend sufficient to allow chemo 2 to go ahead.

So it was testing time again....

Searching for a vein in vain

Staff nurse Becky had the unenviable task of getting the cannula into the back of Steve's hand, but did not find it easy.  The first attempt was just about good enough to squeeze out sufficient blood for testing, but the needle was only just in the vein and very precarious.  The slightest movement and the cannula would have dislodged, spilling the contents of any drip anywhere but where it was supposed to be.  So out it came after taking the bloods for testing, and then she had another go at inserting the cannula into the other hand, but still without any success.  

In the end, Rosita, one of the specialist chemo nurses came to assist. She used a different type of cannula back in the original hand, and hey presto! The job was done, ready for chemo once the second lot of blood test results has been cleared for action.

From pin cushion to rattle

While we were waiting for the blood test results, the pharmacist arrived to talk Steve through his anti-sickness medication and hand over a new set of drugs.  In addition to all the tablets he was taking last time round (see the Popping Pills blog 9 October) he is now taking an extra medication called "Emend" over days 1, 2 and 3 of chemo. Our meso friend Debbie in Plymouth recommended this drug, so we have high hopes it will work for Steve too.

The pharmacist explained that without any anti-sickness medication, 9 out of 10 people on the alimta/carboplatin chemo regime would experience nausea and/or sickness. The antiemetic drugs Steve took on cycle 1 stops nausea / vomiting in 8 out of 10 people.  Unfortunately for Steve, he is one of the 2 in 10 who still suffer this side effect, which was why he has been given an extra (expensive) drug to help control this.  If he wasn't rattling before, he certainly will be now with all these pills inside him!

Ins and outs

All the blood test results were finally back in by 12:45 and Steve was cleared for chemo over lunchtime.  After a saline flush, the alimta was in and out by one o'clock and after another saline flush and a waiting period, the carboplatin was in and out by 3 pm.  A final flush through with saline and we were out of the hospital 10 minutes later.

That was (almost) the week that was

The good news is that the current mix of anti-sickness pills is doing a good job at holding the nausea at bay almost all of the time.  The not-so-good news is that they really mess with Steve's head.  

The steroid dexamethasone makes him feel edgy and needing to do things even in its now reduced dosage. However, he can't focus or concentrate for very long, which is frustrating for him. The other medication and the chemo in general makes him feel tired and listless, so between the whole lot he feels like he's being pulled in two different directions.  As a result, he tends to alternate between short bouts of being energetic and getting on with things, and much longer bouts of napping, sleeping or simply closing his eyes and sitting quietly.  I never know quite what to expect when! However, eating little and often seems to be one way of managing these mood swings for the want of a better expression.

So here we are with chemo day 4 of the second cycle of treatment coming to a close, and the anti-sickness drugs reducing in number and frequency.  I am hoping that by the end of week 1 of this cycle, Steve will be on a much more even keel.  Even so, after only a few days on cycle 2 we both agree that so far this has not been as bad as the first cycle of chemo when he was fighting an infection too.  Must remember to steer clear of crowded enclosed places to avoid picking up those winter coughs and sneezes!

The bigger picture

In recent times the blog has been quiet, I haven't been talking very much to the Meso Warriors on Facebook, and photography has more or less ground to a halt.  However, this isn't entirely because of Steve's chemo.  

Steve's frail, elderly mum who has been in hospital in Bristol for the last six weeks is now well enough to be discharged.  Along with the rest of the family, we've spent many long hours being involved in trying to sort out a care/support plan for her with social services; Lasting Power of Attorney to help her with financial matters; applying for Attendance Allowance to help her pay for the support she needs, plus all the research, inspection and selection of a care home for her to move into when she moves out of hospital, at least for an interim period.  

The bulk of the work has fallen on other members of the family as we can't really travel very far when Steve is feeling tired, and sadly we dare not visit her in hospital for fear of picking up another infection.  Still, we do what we can remotely from home and spend a lot of time exchanging and updating information by e-mail and phone calls with the rest of the family.  Although it looked like things were moving forward on most fronts, there was a bit of a body blow yesterday when one of the family dropped by her house only to find there had been a break in and the place had been rifled through. I won't repeat the names we called the **** who did it, but I hope they will be caught and get their just desserts.  

In his more lucid and energetic moments, Steve has been moderating the RPS Forum.  I have been preparing for work in Guernsey next week, my last tour of duty for this year. I've excused myself from any more cases until Steve's chemo finishes next spring.  I've also been keeping an eye open for flats in London for daughter Katie and her partner, so they have something to move into when the lease on the current flat rental finishes next March. Property within their budget is snapped up very quickly, so they can't leave the search until the last minute.

We've both been watching in horror as Hurricane Sandy swept across the eastern seaboard of America leaving a trail of destruction in its wake and truly horrible times for those affected.  It puts our position in perspective.  

We send our best wishes and good luck to Jan, who has just started the chemo regime that Steve began four weeks ago, and to all the other warriors treading a similar path, wherever they are and whatever stage they have reached along this journey. We send our respect and a big round of applause to Mavis and Debbie who have been so active in raising money and awareness about asbestos and mesothelioma.  We are cheered by the news that other meso bloggers Tess, Amanda and her partner Ray are enjoying good times.  

Last but not least we remember Anita in Australia who died as a result of mesothelioma this time last year, leaving behind her little girl who is now approaching her fourth birthday without her mum, and Ronny who died a little over a year ago, leaving behind a heartbroken family.  Thank you both for your inspiration, with love.