Friday 31 January 2014

VanSel Phase 1 clinical drug trial

Now we know that Steve is definitely taking part in this Phase 1 study, I thought it might interest you to know a bit more about it.  If you want to know more about clinical drug trials and the difference between phase 1 and later phase trials click here, this link with take you to the Cancer research UK website where it's explained very clearly .

The purpose of the biological therapy trial is to determine whether using two drugs, vandetanib and selumetinib, in combination is effective in the treatment of cancer.  
  • Vandetanib is a VEGFR (Vascular Endothelial Growth Factor Receptor) and EGFR (Epidermal Growth Factor Receptor) inhibitor; VEGF is a substance made by cells which helps new blood vesssels develop and grow. VEGR inhibitors stop cancers developing the blood vessels that they need to grow
  • Selumetinib is a MEK (Mitogen Activated Kinase) inhibitor which blocks the pathway along which signals are sent to cells telling them to divide and grow

Although these types of drugs have shown to have an effect in non small cell lung cancer (NSCLC), this is the first time the drugs have been used together.  The aim is to see if combining these drugs has an increased anti-tumour effect for patients whose treatment options are limited.

Steve will be participating in the first part of this study which is for patients with any solid tumour.  The second part of this study is only for patients with non small cell lung cancer. 

The four main aims of this clinical study are to find out:
  • If the two drugs can be given safely to patients when given together
  • The maximum dose that can be given safely to patients
  • More about the potential side effects of the drugs and how they can be managed
  • What happens to vandetanib and selumetinib inside the body

The first part of the trial is a "dose escalation" study.  In this phase, 9-24 patients will receive vandetanib and a low dose of selumetinib to establish a safe dose to recommend for the next stage of the study.  If they don’t have any serious side effects, the next cohort of patients will have a higher dose of selumetinib, and so on, until they find the best dose to give. 

Steve will be one of the first people taking part at the start of cohort "5b" which means he will take a higher dose of vandetanib  than those in earlier cohorts.  We have yet to find out what dose of selumetinib he will be taking, but I imagine it must be near the top end by now, as we understand that the study will finish after six cohorts.  

The first cycle of treatment lasts 42 days.  Vandetanib tablets are taken once a day for 14 days, starting with a high ("loading") dose for the first four days to get the drug into the system, then a lower dose (the "continuous dose") for the rest of the cycle.  On day 15 you start taking selumetinib capsules each day as well as the vandetanib for the next 28 days, until the end of cycle 1.  

Not the VanSel drugs!  I will post a picture of the real thing  when we have both

There is no need for a "loading dose" of vandetanib in Cycle 2, so that lasts 28 days, taking both drugs every day.  As long as you don’t have bad side effects, you can carry on taking both drugs every day for as long as the treatment continues to help you.  You can also stop at any time, if disease progresses, if the side effects are too bad for you, or if you have simply had enough and want to stop.

The study started in December 2011, so the researchers have already gathered a lot of information about the two drugs and how they work.  Doses are now being fine tuned to get the optimum combination.  

There are a dozen or so hospital visits during cycle 1 to check on how you are doing - physical examination, blood pressure, blood samples, ECG and eye tests at different intervals - plus three occasions when bloods are taken for research over a 24 hour period, which involves hospital visits two days running (which is a bit of a pain, but avoids an overnight stay).  

In cycle 2 there are weekly check ups.  If you carry on to cycle 3 or beyond, check ups are monthly.

As with all drugs, there are side effects - the most common being diarrhoea, fatigue, nausea, mouth sores and skin swelling of the face and extremities, vomiting and fever.  Less common side effects are blurred vision and changes in the electrical activity of the heart and heart rhythm (hence the eye tests and ECGs).  

Hey ho!  When you read a list like that, you begin to wonder if this is a good idea.....However, not everyone experiences all of these things and there is medication to help manage these side effects.  Steve has managed before on his two previous treatment regimes and we are hopeful that he will be able to manage again this time round. 

As before when Steve has been undergoing treatment, I will try to update the blog more frequently.  If nothing else, it can be a useful record of events to refer to when faced with the usual questions by the trial team - How have you been feeling?  What have you experienced?  When?  For how long? How intense?

You may find it a bit boring as a result....not as much fun as talking about adventures and new experiences, but just as important in its own way, especially for anyone else offered the opportunity to take part in the trial who is wondering what happens. 

Life is likely to be very different for a while from next week onwards, so we will be making the most of this weekend to visit family, be sociable and enjoy some good food and wine while we can.  After that it will be onwards and upwards, we hope!

the green light

We have been in limbo these last few days, waiting for Steve's test results and news of whether he can take part in the VanSel1 drug trial.  

The hospital just phoned.

The answer is yes!

Now we have the green light, it's all systems go to start next week.  

Just time to fit in some family visits and socialising this weekend before we sail off into uncharted waters.

I will do another post with more about what we have been told will happen, after we have caught our breath and adjusted mentally to the reality of going back on trial.....

Tuesday 28 January 2014

tests, tests and more tests...

After having his "baseline" scan last Friday, we were back in hospital again today for Steve to be tested to make sure he's fit enough to start the VanSel1 drug trial next week.  

It's a very thorough procedure, partly to make sure he meets the trial eligibility criteria and partly to have a baseline against which any changes to his body arising from the drugs or their side effects can be measured.  

So - what was involved?
  • Physical examination, including height and weight measurements
  • Vital signs (blood pressure, pulse rate and temperature)
  • Blood tests 
  • Urine tests
  • ECG  (heart trace - three tracings over 5-10 minutes)
  • Echocardiogram (a bit like an ultrasound scan, with jelly on the chest )
  • Eye test - to rule out any eye conditions that might be made worse taking the study treatment
The echocardiogram was carried out at a different Oxford hospital and the eye test by a local optician, but luckily we had time to go home for lunch in between.  While we were at home, Julianna the trial nurse phoned to say that Steve's potassium levels were spot on.  No need to go back to the Cancer Centre for a top up, which would have been necessary had they been too low for the trial.  Eating all those bananas has clearly paid off!

The tests themselves were relatively straightforward.  It was only the very thorough eye tests, which involved dilating the pupils, which caused any problems.  Even though it was cloudy, the brightness on going outside after the test hurt Steve's eyes.  But he was back to normal by the time we arrived home....Must remember to take sunglasses or a baseball cap next time to shade his eyes! 

Only when they check the results of all these tests will we know if Steve can take part in the trial. 

Now we wait....

Sunday 26 January 2014

That was a week, that was

It has been one of those weeks we will remember for all the wrong reasons.

Last Monday, we went to hospital thinking that Steve would undergo tests to see if he is eligible for the VanSel drug trial. But because of the problems of arranging a scan appointment at short notice, most of the tests have been pushed back a week or so.  As a result, we are still in limbo - not knowing whether or not he will be able to take part in the study.

On Tuesday, I headed off to Guernsey for one of my occasional work-related visits, only to find on arrival that my mobile was misbehaving and I was unable to send texts or make outgoing calls, just receive incoming.  Not a complete disaster, but annoying because it made communication that much more difficult.  But at least the hotel had wifi, so I was able to catch up on news via e-mails and Facebook at the end of each working day.

Thursday morning, I woke up to the news that one of our cyber friends and fellow meso warrior Jan had died after a long battle with cancer.  It was not unexpected, but still heartbreaking.

Friday in Guernsey dawned wet with low cloud, which did not lift as the day went on.  The fog closed in and the 4 pm flight back to the UK was delayed, then cancelled.  Rebooked on the 6pm flight which was delayed for a couple of hours, then cancelled.  

By that time, there was no availability on the early morning flight the following day, so I was rebooked on the Saturday afternoon flight back to Southampton. 

Saturday brought news that Steve's mum had been taken into hospital in Bristol and was undergoing tests to find out the source of the problem.  That was still up in the air by the time my afternoon flight was due to take off.  But the plane was still on the ground.  It had developed technical faults which they were unable to fix, so we had to wait until early evening for a replacement plane to come across the Channel, landing in Southampton around 7.40 pm.

Earlier that day, a short but very vicious storm had brought down trees in the south of England, blocking railway lines and roads.  Trains from Southampton Airport Parkway station were replaced by busses and I found myself on the road to Basingstoke where we were dropped off at the station and left to fend for ourselves.  No direct trains to Oxford from there. Trains to Reading to make a connection were cancelled or severely delayed. 

I began to doubt whether I would get home that night. However, meso warrior Mavis kept me company chatting on Facebook until my knight in shining armour - i.e. Steve in the car - came to the rescue.  After a long detour to avoid fallen trees, we eventually arrived home at 11.30 pm last night. 

Today, we learned that Steve's mum is still in hospital but has had a good night.  We expect her to be discharged back to her care home when the consultant returns on Monday.

We have also been told details of the celebration of fellow meso warrior Jan's life.  However, it's the same day that Steve is due to start the VanSel trial (if he is accepted) so I doubt we will be able to attend.

That was quite a week, that was, for one reason or another - and I am happy to say goodbye to it and move on....Let's hope more positive things will happen next week and we are both able to re-charge the depleted body batteries and recover from the coughs that have crept up on us over the last 5-6 days. 

One last thing.  Sadly, the merry band of meso bloggers is shrinking.  I hope more people will come forward and share their experiences.  Jan found that writing about her cancer was a release for her and helped her deal with her disease.  I feel the same way as a carer.  It might help you too, if you are in the same position.  Think about it....

Jan's (last) Journey

When Steve was first diagnosed with mesothelioma, we scoured the internet looking for information, advice, fact anything that might help us.  One of the websites we discovered was Jan Egerton's blog, Mesothelioma - Jan's Journey. We have been following Jan's journey ever since. 

Jan was diagnosed in 2004, age 44 years, although she had symptoms of the disease going back the the late 1990s.  Her response to the diagnosis was to fight back.  

And what a brave fight she has put up over the years, in spite of prolonged pain and many frustrations.  Major surgery to remove tumours and clear the chest wall of pleural thickening; pleurodesis; radiotherapy; chemotherapy; cryo-abalation in the States; more chemotherapy; another operation to remove the left lung lining, diaphragm and heart sac and replace with synthetic lining; more cryo-abalation; more radiotherapy, followed by yet more chemotherapy and the fitting of a permanent drain to deal with a build up of fluid in her stomach (ascites).  Her last act of defiance was another blast of radiotherapy mid-January.  If anyone deserves the title "Meso Warrior" it has to be Jan!

Sadly, Jan lost her last battle on Wednesday 23 January. However, she leaves behind a legacy of words in the form of her blog (which should be required reading for any nurses or doctors treating people with mesothelioma); the articles she has written for various mesothelioma websites and two fiction books (proceeds from the sale of which are donated to the Mick Knighton Mesothelioma Research Fund).  Find out more by clicking here . 

Jan inspired, helped and supported others in her position and their carers, and did much to raise awareness and fight for improvements in patient care, all the while she was fighting her own war on mesothelioma.  She will be sorely missed by the mesothelioma community.  Our thoughts are with her husband Gary and their family and friends.

We never met Jan face-to-face, although we talked often on Facebook and  exchanged e-mails.  We had hoped to meet up in person at the Mesothelioma Patient and Carers day in 2012, but that coincided with the start of Steve's second chemotherapy regime and we had to cancel.  Sadly, we can't even come to celebrate your life in February, as that will coincide with the start of Steve's third treatment regime, assuming he is accepted on to the VanSel1 drug trial. However, we will be with you there in spirit and we send our love to all those celebrating your memory.  

I'm so pleased we met in the virtual world.  Thank you for your support and inspiration, Jan   x

Monday 20 January 2014

signing on the dotted line

This time least week, we thought we would be spending today in London on a tour of the Houses of Parliament, organised by the Friends of the Ashmolean Museum.  That was not to be because...

This time last Friday following a phone call from the Cancer Centre, we thought we would be spending the day in Oxford on a tour of various hospital departments, organised by the Clinical Trials Unit so that Steve could have the various tests needed to see whether he is eligible for the VanSel1 drug trial.  

Today, we weren't quite sure where we were going as the driver of the No 4 bus (which should have taken us to the hospital) lost the plot and went off route, much to the consternation of passengers...ourselves included!  However, we did eventually get back on track and arrived at the hospital on time for Steve's appointment at the Clinical Trials Unit.

We had been told that Steve would be having a whole array of tests today, with the aim of starting the drug trial next week if all is well.  However, it proved impossible to get a CT scan slot today.  As a result, everything has been shunted back a week before we've even started - always assuming, of course, that Steve "passes" the tests.

However, it was a good opportunity to meet key members of the team who will be looking after Steve if/when he goes on trial: Julianne, the clinical trial nurse, and Dr Nick, one of the trial doctors.  We had already met the other doctor, Dr Ioannis, when we picked up the information sheet last week.  

We now know that if the tests are OK, Steve definitely has a place on the trial even though he would be starting a week later than originally planned.  

He would be in a new group, Cohort 5B, which means the study has already established that the dosage level in earlier cohorts is well tolerated, without severe side effects.  He will be in the first group to get a slightly larger dose of one of the two drugs involved in the trial (both of which have been tested and found safe on their own).  

We discussed the side effects and pattern of hospital visits - more about that in a future blog, when we know for sure whether or not he will be taking part.  

Appointments now in place for a scan at the end of this week and the rest of the tests next week.  We ought to know the results by Friday 31 January and if all OK, the trial will start in early February.  

After about an hour and a half of discussion, Steve signed on the dotted line.  Consent given.  Another small step forward on the next stage of the journey....

Friday 17 January 2014

Fast Forward

Steve read the information sheets on the Oxford VanSel1 clinical trial last night.  Although the practical side of protecting his skin from sun exposure is exercising his mind, the thought of wearing protective clothing and high factor sun screen is not so bad as to make him reconsider taking part.  

He was reading through the blurb again in the cold light of day over breakfast this morning when the phone rang.  It was the trial nurse asking whether he had made up his mind yet?  They normally give people at least 24 hours to think about it.  However, there is a slot coming up very soon in the Oxford cohort and she didn't want to waste time (and maybe loose the slot?) by waiting until after the weekend to set the wheels in motion if Steve is interested.

Steve said yes he was and, suddenly, after the baby steps of last week, it's fast forward.  He has an appointment on Monday for the screening tests.  If he is passed fit to go, it will all kick off the week after....I will post more about it when we know whether or not Steve will be on the trial.

In the meantime, here is a special hug for all the Meso Warriors, especially Jan who is in pain, Tess who has just had news she didn't want to hear and Mavis who continues to do the meso community proud...this time by appearing on TV on Sunday morning to talk about the Mesothelioma Bill (currently going through the UK parliament) from the point of view of someone fighting the disease.  Thank you, Mavis!

Thursday 16 January 2014

Baby steps forward

This time last week, we had paddled home through the floods after our visit to the hospital to discuss treatment options with Steve's consultant and were feeling optimistic! A lot of water has, quite literally, gone under the bridge since then...

River levels in Oxford peaked last Thursday and have since being going down very slowly. Although the park at one end of our street remains mostly under water, the main road at the other end of the street - which had been closed due to flooding - eventually reopened and we were able to go out in the car on Monday to re-stock food and other essential supplies.

As anticipated, many of the things we had been storing in a rented garage a few streets away have had a good soaking, so a lot will have to be thrown out/recycled in the coming weeks when we have the time, energy and inclination to get our hands dirty.  In the meantime, it can carry on drying out...

The reopening of the main road meant that postal deliveries have resumed.  At long last, a camera that I won in a competition back in September has arrived, together with a camera case by way of apology for the delay.  Thank you Olympus - I look forward to playing with the new kit! However, there was no sign of the information sheets about the VanSel drug trial Steve hopes to take part in, which was making us a little anxious.

Then yesterday afternoon there was a phone call from the hospital saying the information was now available - did we want to collect it?  Yes please!  The timing of the phone call was fortunate.  Shortly after, the electricity supply which had cut out several times over the previous two days, went off again and stayed off....a victim of the flooding and high water table levels.  Thank goodness we had a large supply of candles, a big new box of matches, a film downloaded on to a fully charged iPad, plenty to eat and a bottle of wine.  After the initial frustration, it turned out to be quite a romantic evening!

Power supplies were restored about 8 o'clock this morning, just in time for breakfast.  Apparently the fault causing the problem has been found and the engineers will be working on a permanent fix tonight.  We are bracing ourselves for another power cut this evening, but hopefully that will be the end of it...

We have been to the hospital today and collected the information sheet about the drug trial which I scanned quickly on the way back home. I confess that when faced with a long list of possible side effects in black and white, the prospect of going back into treatment looses some of its appeal.  

In particular, the trial drugs make skin very sensitive to UV light so anyone taking part has to cover up as much as possible and use a minimum of factor 50 sunscreen on exposed parts when outdoors, even in winter.  Steve is not a great one for sunbathing, but neither is he a great fan of slopping on sunscreen, so that would be a challenge for him.  

Other side effects are similar to those experienced with previous chemo regimes - not things to look forward to...On the other hand, not every one experiences the same effects so until treatment begins, we won't know how it will be...

We'll read through the fact sheets in detail tonight and if Steve still wants to take part, he'll phone the hospital tomorrow to arrange an appointment to  deliver the consent forms and get dates for the extensive tests that have to be carried out to make sure he's well enough to take part in the drug trial.  Then we wait for the it's baby steps forward....

It was strange going back to the Clinical Trials Unit today. The last time we were there was some four years ago, when Steve took part in the Velcade drug trial. The Cancer Centre had only just opened then. The NHS Trust had commissioned "uplifting" artwork and we were delighted to see one of my photos on display in the room where Steve had treatment several times.  We noticed today that it's still there, and still looks good.  The doctor we saw today was also impressed when we pointed it out to him!

With the possibility of another power cut tonight, I think I ought to post this now rather than wait until photos have been downloaded.  Time to take a deep breath before reading the information sheets and facing the demons of fatigue, mouth sores, skin rashes, diarrhoea, blurred vision, loss of appetite and all the other stuff that may be waiting for Steve in the next few months, assuming he signs the form and passes the tests to get on the trial.  Here we go again...probably, maybe....

Thursday 9 January 2014

a little bit of a distraction before the big day...

If you are a regular reader of the blog, you will know that the run up to a hospital appointment is always a bit stressful, so we try to find plenty to do to distract us.  This time we didn't have to go looking for a distraction - it came to us big time.....Flooding!

River levels have been rising steadily since Christmas, so it wasn't unexpected.  We were in the middle of a party when the phone rang with the automated Flood Warning message to take action but we carried on partying anyway, as you do....However, there have been two flood-related deaths in Oxford since then and we have had to take it seriously.  

We live on a short cup-de-sac to the west of Oxford City centre.  At one end of the street is the main (and only) road into Oxford from the west.  At the other end of the street, a bridge crosses a small stream into a park.  

It's not unusual for the park to flood during prolonged periods of heavy rain - it's part of the Thames flood plain.  But it doesn't usually stay flooded for long.   This time, the park has been underwater since 3 January and the water has been getting deeper and deeper since then.  The flood gauge in the stream has been completely submerged for several days and you can't tell where the stream ends and the park begins....

Yesterday at the entrance to the park (the remaining grass is under water now)

Yesterday - today you can't see it at all!

The playground two days ago - the benches and picnic table are now under water, as are the seats on the swings below

The water at the main road entrance to the park is even higher now...

At the other end of the street, the main road has been closed to traffic for two days now because of flooding which is quite deep in places.  Too deep to drive through safely unless you have a big vehicle or four wheel drive.  

Before the main road was closed to through traffic

Note : the lorry is delivering spring water!

Today - you can walk in the middle of the main road, but the water is deeper at the sides

High tide at Botley Road earlier today

Some nearby residents have been evacuated and others have lost power supplies.  Thankfully our street is still OK for now but on a shrinking island of dry land surrounded by flood water.  

This is where we rent a garage where we have stored things while refurbishing the house.  The water has now breached the sandbag wall to the right and local residents have been evacuated.  Needless to say, the garage is well and truly flooded.  An extreme way to declutter!
The park on the south side of the main road, with one lonely car stranded
The local allotment gardens were an early victim of the floods - the Thames runs along one side
River levels are expected to peak tomorrow, so if we survive that long we should be OK.  However, we are prepared with sandbags downstairs ready to deploy if needed and flood kit (torch, matches, candle, drinking water, fully charged mobile, wells etc) upstairs just in case....

With all this going on, we didn't get round to sitting down to talk to each other about Steve's next steps in treatment options until yesterday afternoon.  

Although there are more drug trials currently recruiting in the UK than there have been recently, when we looked at these in more detail we found that Steve was excluded from many as they are specifically targeted at people who have not had chemo before, rather than long term survivors with one or more chemo regimes under their belts.  

There are other trials which look interesting but they specifically exclude people with a medical history of autoimmune diseases like arthritis - which means Steve can't take part.  

That left one possible trial in London (ADI-PEG 20) which is only open to people who are ASS negative (google "Arginine" if you want to read the science bit), so we wouldn't know if Steve met the criteria until a biopsy was done, and even then he might be randomly allocated to the placebo group.

The other trial is recruiting here in Oxford, as well as Cambridge and Manchester.  It's called VanSel and is looking at two new drugs called Vandetanib and Selumetinib.  These are biological therapies which block some of the proteins which tell cells to grow and divide.   

So we knew that these were the ones to focus on at our meeting with the consultant this morning, assuming we could get there.  Luckily, the flood waters on the main road were not too deep to paddle through in our wellingtons, although it was a bit tight when the occasional local car and emergency vehicle went by, creating waves...However, we made it to the rail station and took a taxi up to the hospital which is on higher land.  We were the only people there wearing wellies....

Although it was a long (hour +) wait for Dr T, it was worth it. He tells it like it is, but his manner is relaxed and reassuring. He knows we have done our research so doesn't talk down to us. He knew what we wanted to talk about so it was straight down to business.  

The VanSel trial is still recruiting, but not for much longer. It's a Phase 1 study so everyone gets the same treatment, but at escalating doses.  The two drugs complement each other. Vandetanib is a Tyrosine Kinase Inhibitor (TKI) while Selumetinib is a MEK inhibitor.   In simple theoretical terms, one drug blocks two pathways into the cell.  When the cancer tries to find am alternative route into the cell, this pathway is blocked by the other drug.  The study is to see whether the two drugs work this way in practice, establish the optimum dose and learn more about the side effects.

The drugs are given in tablet form - so no hours on end hooked up to a cannula and drip!  Weekly hospital visits for the first two months, then monthly thereafter. Because it's a study rather than a drug trial with an end date, people can carry on taking the tablets for as long as they work (i.e condition stays stable) and the side effects are manageable. One man in Oxford has been doing it for a whole year now! You can read more about VanSel1 by clicking here

Steve has decided to go for it, if they will have him.  There are still protocols to go through.  We have to read a detailed information sheet, then assuming he still wants to go ahead, we'll get an appointment to go in and sign the consent forms. Then he will have the tests to make sure he's fit enough (physical exam; eye test; blood and urine tests; an ECG i.e. heart trace; heart ultrascan; chest X-ray and CT or MRI scan and maybe a bone scan).  If all that's OK, he will then have to wait for a slot to be come available....

So we still don't know for sure that he will be able to take part and if so, when it will begin.  However, the ball has started rolling which feels good!  

Two other things worth mentioning from this morning ....

Today's X-ray shows no sign of any change since October's scan.  Dr T doesn't consider the new lymph node nodule significant; pleural thickening is still minor and the tumour has no great bulk, so "de-bulking" is not something we need to think about for the time being.

The other thing is good news for other meso patients and cancer patients generally!  Grant applications by Oxford and Stanford Universities have been successful to fund a trial in the autumn for a new drug (HU5F9G4) with a novel cancer target CD47. The function of this cancer target is well known (it's found in all cancer tumours, apparently).  The early stage testing of the drug to be trialled has shown it to be very active in tumour control.  The trial is going through all the protocols at present but should be up and running in the third quarter of 2014.  The downside for us is that Steve would not meet the draft eligibility criteria as it excludes people with a medical history of auto-immune diseases.  However, it sounds like a very exciting development for other cancer patients - and not something under the control of the big drug companies, which has got to be good news!

We came out of today's meeting feeling almost light-hearted, in spite of the continuing threat of flooding.  I think you can see it on Steve's face :-)   

Steve has found his way home through the floods

And now he's thinking about going for a paddle in the park...

I am just happy with my new purple wellies - the last pair of size 5 available in Oxford yesterday!

I'll keep you posted on what happens next, flood wise and on the VanSel front.  Keep your fingers crossed for us tonight and tomorrow.   

If you want to know more about the flooding in Oxford, the local papers are running a daily blog with flood updates every 30 seconds (tick the box).  New blog every day.  Access today's blog by clicking here  There are lots of pictures, including a couple of mine, and a video (if you ever need to know how to make a sandbag!)     

Sunday 5 January 2014

The party's over...for the time being

After a memorable Christmas, 2014 got off to a flying start.  

We went to a New Year's Eve party hosted by our friends Elizabeth and Roger and raised our glasses in a toast to 2014 as Big Ben chimed.

Lunch on 2 January with Steve's brother Martin and his wife Mary - enjoying a meal at our local gastro pub, The Punter, then back to our house for coffee and more chatting before waving them off back to Frome in Somerset.

Yesterday, on the Tenth Day of Christmas, we were delighted that many of our neighbours and dear friends from Oxford and much further afield were able to brave the storms and floods to join us for an evening of drinks and nibbles.  

There were people from all stages of our lives, back to our student days and including those we got to know through work and have since stayed in touch with.  Many of these had not seen each other for a while, so it was reunions all round! It was also lovely to see friends from different parts of our lives meeting with each other and having a good time together, as well as having young children in the house again - the street is renewing itself with young families!

The house was buzzing with life which not even an automated phone call from the Environment Agency warning that flooding could be expected that night could spoil.  We just carried on having fun!  Thank you to everyone who made it such an enjoyable occasion.  For those who couldn't join us due to illness, we hope you are fully recovered soon.  For those who had other commitments, we hope you had as much fun as we did, especially Elizabeth and Roger who are in Iceland hoping to see the Northern Lights.

Today, the Christmas tree and decorations have come down and we are gradually working our way through the big post-party tidy up.  Back to reality....

...I'm pleased to say that although the park at the end of the street is back under water, the level has not risen overnight, and we can still see the top of the flood gauge today.  This means there is still capacity in the flood plain to accommodate yet more water before we have to start thinking about shifting important things upstairs.  Hopefully, it won't come to that.  

Today, the Christmas tree and decorations have come down and we are gradually working our way through the big post-party tidy up, although not with a great deal of enthusiasm, I have to confess.  But we'll get there in the end.   

Steve's appointment with the consultant is on Thursday.  Over the next few days we really must think hard about options and how to handle the meeting so that we come out having made a decision, or at least having the information we need to choose a direction and the means of making it happen.  

There are a few commitments on the calendar for January, but nothing beyond that date as yet.  I imagine that by this time next week, it might start looking a bit different.  We shall see....

It has been good to see that many of the meso warriors have enjoyed the festive season, or fared better than they dared hope while undergoing or recovering from treatment.  Big hugs to you all.  And a very special, tender hug for Faye whose dad died this morning, only 2 months and 3 weeks after being diagnosed with heartbreaking.

Rather than end today's post on a sad note, here are two bit of good news which are nothing to do with cancer.  Firstly, there was a one page spread featuring my photography in Digital Camera magazine which went on sale on Friday.  Click on the image to see it larger - you might just be able to read the words!

Secondly, my image Lady-in-Waiting has reached the final of the "Art of Building" photography competition, sponsored by the Chartered Institute of Building (CIOB).  

You can see all 15 finalists and vote for your favourite by clicking here!  One vote per person.  Voting closes 9 January, the same day as Steve's next hospital appointment so I will have other things on my mind!

Friday 3 January 2014

Light a candle

Please join us for the longstanding Mesothelioma Warrior Candle Lighting tradition on January 4th, as we light candles in love and support for Mesothelioma Warriors around the world. 

The Asbestos Disease Awareness Organisation (ADAO) published the 2013 Mesothelioma Warrior Candle Lighting List with nearly 800 names on Dec. 27th  2013.  Steve's name is there, right at the end of the list.  

To find out more and light a candle to show your love and support, please click on this link .

We are still in New Year celebration mode; normal blog writing service will be resumed next week when we get back to reality......