Monday, 30 December 2013

Recipe for a memorable Christmas

Ingredients 

Christmas tree, cards, presents, food, wine, fizz, games, leisure time and people.  Mix and match quantities and vary cooking times according to your personal taste, but don't scrimp on the most important ingredient - loved ones, family and friends.....

Method

At least 24 hours before the big day - longer if possible - marinade guests with wine, fizz or Christmas tipple of their choice to help them unwind and get into the festive spirit. Allow yourself to be marinaded by others as part of their festive preparations!

When fully relaxed, warm up gently as the presents go under the tree on Christmas Eve, and stir occasionally to keep the circulation going...

On Christmas morning, carefully lift the presents from under the tree and remove the wrapping gently to discover the contents.




Whilst waiting for dinner to be ready, use the time to play with presents and keep up blood sugar levels in between taking power naps.  Some wonderful combinations include sudoku and chocolate biscuits; crosswords and chocolate truffles; books and chocolate ginger sticks; DVDs and chocolate money; games of "Pointless" and boxes of chocolates. Oh....and did I mention chocolates?  

But don't go over the top or you will spoil your appetite for dinner.....

Hint:  Don't forget the parsnips roasting at the back of the oven, out of sight of the casual observer....we discovered them at the end of our meal, but they made very good "leftovers" soup the next day!

Dine by candle light - it's flattering and romantic, and the best option to see what you are eating if your electricity goes off (fortunately, we were not affected by power cuts caused by storms in the south of the UK but pity those poor people who were...)

Wake yourself up with a Boxing Day walk - carefully avoiding swollen rivers, flooded roads and footpaths, whilst enjoying the diversions on your way to higher ground!  But don't worry about a bit of mud - it just adds another texture to the rich tapestry of the festive season.  

We headed off to Wittenham Clumps to enjoy the fresh air and fine views over the Oxfordshire countryside (quite a lot of which is under water at the moment).


Wittenham Clumps


Steve captures the view from the top


The Thames in flood below Wittenham Clumps

Daughter Katie, partner Ed and Steve get a breath of fresh air
After a few hours outdoors on a bright, frosty day, it's important to warm up with food and drink at a nearby hostelry before returning home for another pre-dinner Boxing Day power nap. 

And so another Christmas has come and gone - Steve's fifth since the mesothelioma diagnosis.  Thank you to everyone who helped make it memorable with your good wishes, social gatherings, delightful gifts and wonderful company!  

It feels rather strange now the house is empty again, but it won't be for much longer as there will be another social gathering here before Twelfth Night. In the meantime, there is a New Year's Eve celebration to look forward to tomorrow, followed by lunch out with Steve's brother and his wife later in the week.  Plus a get-together in London with friends from my school days before we need to prepare ourselves for the meeting with Steve's consultant on 9 January to discuss treatment options and decide what happens next.  

To all our family and friends, we send our very best wishes for a happy and healthy 2014 and hope we will see you again at some point during the year.  And special hugs and positive thoughts for all the Meso Warriors who continue to fight this disease; their carers and loved ones.  We are moving closer to a cure...One day it will come....Who knows, maybe 2014? 








Wednesday, 18 December 2013

preparations and parties

Since I last posted, there has been a significant date for us. 16 December marked four and a half years since Steve was diagnosed with mesothelioma.  I  hoped and felt, but never dared expect, that I would be able to say that when I started writing this blog.  But it's a very good feeling to pass yet another milestone on this journey!  

The last 10 days or so have been dominated by preparations and parties.  

Preparations
We have started collecting information to look at and consider carefully before we meet Steve's consultant in January to discuss options now that the mesothelioma has started to grow again.  

Andrew Lawson, doctor and fellow meso victim, has already given us some words of wisdom from his perspective as a seven year survivor.  

Barts Hospital has come back to us with details of a clinical trial of a new drug called Tremelimumab due to start in January.  Looks interesting but we are not sure whether Steve would be eligible as it appears to exclude people with a medical history of autoimmune diseases, including arthritis. Waiting for clarification on that and details of other trials currently recruiting at Barts.

We have asked the Specialist Lung Nurse team at our hospital to ensure that we talk to the consultant in January; told them we would like to know more about the Phase 1 VanSel clinical trail currently recruiting and sent links to the Barts clinical trials, so that we can have an informed discussion when we see Dr T.

Having started that ball rolling, we have at last made progress on Christmas preparations - cards printed, signed and posted; some presents on the way, others on order and due to arrive any time now (I hope!); wreath shining on the front door; the tree came inside and was dressed today, although we have yet to decorate the rooms, hang cards and distribute the ones we deliver by hand ..still, plenty of time to do that!  

Parties
Having worked hard on the preparations, we thought we deserved a bit of partying!  

The festive season kicked off with Em and Nick's engagement party, dancing until the early hours!  That was followed by Helen's "Equator Day" gathering to celebrate that she has now lived in the UK as long as she lived in Zimbabwe! 

Christmas proper kicked off on Sunday with mulled wine and mince pies at Tony's house, one of our neighbours just a few doors away, and a chance to chat with other neighbours we don't see that often.

Wride and Company (i.e. me and Steve!) travelled to London yesterday for the "office" Christmas lunch at Ronnie Scott's Jazz Club in Soho - an event which lived up to and indeed, exceeded, expectations!  In fact, it was a complete hoot, with good food and wine, prosecco on the house on arrival, party hats, streamers, poppers and balloons AND kazoos for when people had loosened up a bit (which didn't take long).  The house band were great, especially the second set where they invited requests for songs to sing in different styles, like a reggae version of Silent Night, and operatic version of Jingle Bells, Good King Wenceslas punk style....you get the picture.....

This will give you a flavour ...it's the last couple of minutes of the show - Steve is the one in the dark clapping like mad!! 



With preparations to complete and more parties to look forward to in the coming week, I doubt whether I will post again this side of Christmas.  So I will take this opportunity to wish you all well and send love from both of us to you and your families.  And very special positive thoughts and hugs to the meso warriors and their carers, and those who find themselves alone this Christmas time, but not by choice.  

Linda and Steve xx

Saturday, 7 December 2013

Getting back up to speed and the start of an action plan

After being stopped in our tracks for a short while following Thursday's news that Steve's meso is on the move again, we are slowly but surely getting ourselves back up to speed - helped on our way by all the messages of support and good wishes.  Thank you all so much!  It feels wonderful to have so many people there for us, helping us move forward.  I will try to reply to you all individually, but it will take a bit of time.

Now the raw edge of the news has dulled a bit, we have been thinking about where we go from here.  One decision has been made.  Steve definitely wants to do something, rather than sit back and wait for the meso to grow and spread before taking any action.  So Option 1 has been set aside.

There is scientific evidence that mesothelioma patients who experience a relapse after being treated with pemetrexed based drugs (like Steve) may benefit from being treated with same drugs again.  You can read a summary of this Italian study by clicking here.  Our meso friend Heather confirms that this was her husband Alan's experience too.  So a further regime involving pemetrexed (aka Alimta) looks like a good fall back option to have in the bag, if all else fails.

However, Steve is keen to try something new, so we are focussing our attention on drug trails which are currently recruiting.  We know from experience last time round on the Velcade trial, that people on drug trails are monitored very closely and given lots of attention, which is always reassuring.  

We also know that drug trials are essential to find a cure for mesothelioma, so by taking part in another one, Steve would be helping others in his position in the long term.  Who knows?  He might even find himself taking the drug that is more effective than the current gold standard....  

Of course, he might find himself taking a placebo in a Phase 2 trial.....But as long as that's combined with pemetrexed (and maybe a platinum-based drug) he would be no worse off than if he had another chemo regime like the last one.

Phase 1 trials are different - everyone gets the trial drug. It's very much a step into the unknown, but it might be a leap in the right direction.  

To make an informed decision, we need relevant, detailed information about the trials on offer; what they involve; how they work; the side effects of treatment; whether Steve would be a suitable candidate.  And we need to gather this in an organised way, so that we can have a productive discussion with the consultant on 9 January.  

This morning we talked about a multi-pronged approach to move forward:

  • Contact the specialist lung nurses at our cancer centre to ensure that it's the consultant we see in January (rather than a registrar) and to let him know that we want to know more about the Oxford-based VanSel-1 Phase 1 trial which he is leading, as well as his professional opinion about other drug trials within travelling distance of Oxford
  • Contact Barts Clinical Research Centre with a synopsis of Steve's meso history to seek their views on whether they would consider him a potential candidate for any of the trials that are currently recruiting, including the SKOPOS trial of Trovax alongside chemo (although Steve's history of arthritis would probably rule him out of this immunotherapy trial); MESO 2, which involves adding a biological therapy drug called Ganetespib to the standard chemo; COMMAND trial which involves taking either another biological therapy drug called Defactnib or a placebo (not so good if you get the placebo and the meso continues to grow); the ADAM trial - a phase 2 study to compare the results of a drug called ADI-PEG 20 with best supporting care (again, not so good if you don't receive the trial drug)
  • Contact Andrew Lawson - a doctor and fellow meso patient, to find out more about his treatment which involved drug trials abroad and whether he has any advice about those currently on offer in the UK
  • Talk informally to our friend and neighbour down the road, who also happens to be an oncologist (although he doesn't work locally) 


At the moment, from our point of view, the front runners in terms of drug trials appear to be MESO 2, where at least you get standard chemo if you are not picked randomly for the trial drug, and the Oxford-based VanSel 1 trial - a step into the unknown...but isn't life like that anyway?

But enough of this stream of consciousness stuff!  Back to reality now...

I have to get a copy of today's Guardian as one of my images is featured in the magazine for the second successive week; 





we have an engagement party to look forward to this evening; a Secret Santa present to wrap and post; cards to print, sign and post; presents to think about; other meso warriors' news to catch up on as well as lots of e-mails to reply to and plans to make for what promises to be a very busy time between now and D-Day on 9 January.  Oh yes....and Christmas/New Year in between!

Big hug to all the meso warriors, especially Jan whose scan results did not bring good news and who is now so breathless when climbing the stairs and walking any great distance that she is now investigating chair lift and wheelchair options. Good luck too to Amanda and Ray, who is almost at chemo cycle 4, with cycle 5 scheduled for New Year's Eve, and Mavis who gets her scan results next week 

xxx


Thursday, 5 December 2013

time to think about options....

Unlike the doctor who kept us waiting an hour and a half this morning, I won't keep you in suspense about the outcome of Steve's assessment this morning.  

The scan taken at the end of October showed some pleural thickening (minor according to radiologist's report).  It also showed a "new lymph node about 1.5 cm in size" to use the doctor's words.  I am kicking myself now that we didn't ask a few more questions about this aspect of the result. However, we were still digesting the news when the registrar moved on to talk about options....

Option 1 is do nothing for the time being, as Steve is largely asymptomatic and enjoying "normal" life; keep under review and take action only when he has problems.

Option 2 is to have another regime of pemetrexed and carboplatin; it resulted in shrinkage before with no lasting ill effects and may have the same positive effect second time around.

Option 3 is to go on another drug trial.  

Oxford has a two part trial open at the moment.  Although Part 2 is aimed at Non-Small Cell Lung Cancer (NSCLC), Part 1 is also open to other types of cancer.  The drug trial is called "VANSEL 1" for short.  It's a Phase 1 dose escalation trial of the oral VEGH/EGRF inhibitor Vandetanib (ZD6474) in combination with the oral MEK inhibitor Selumetinib (AZ6244).  Details of the trial can be found by clicking here

Vandetanib is a type of biological therapy called a tyrosine kinase inhibitor (TK1).  Tyrosine kinases are proteins that sends signals to cells telling them to grow and divide.  TK1 blocks these proteins which can stop cells growing.  

Selumetinib is another type of biological therapy called a MEK inhibitor.  MEK is also a body protein that sends signals to cells to grow and divide.  Blocking MEK may also stop cancer cells growing.  Researchers think that using both drugs together may may be better than having one or the other on their own.  

We asked about the current trials at Barts and Leicester (MESO 2, COMMAND, ADAMS and SKOPOS) but the registrar knew nothing of these.  She made notes and will follow up with the consultant Dr T.

Steve said that he doesn't want to sit back and do nothing. He thinks that if he leaves it until the disease takes off properly, his treatment options will close down or be less effective.  

His gut instinct at the moment is to go with the drug trial option, if he is suitable.  However, that involves a decision as to whether to chose the local Phase 1 trial and be a guinea pig to help establish the most effective combination of dose and frequency, or go on a Phase 2 trial and run the risk of getting a placebo rather than the drug (plus there is the time, cost and energy implications of traveling to London or Leicester).  Decisions, decisions....

We need a bit of time to digest this news, do some more focussed research and consider the best option for Steve, so we have arranged to go back on 9 January, talk it though and make an informed decision.  In the meantime, we will concentrate on having a wonderful Christmas and enjoying life before treatment begins again and takes us out of circulation for a while.  

I wasn't sure whether we would be breaking open the fizz tonight given this news.  However Steve is already one of the lucky one in ten alive three years after diagnosis and in six months time will be one of the 5% still going strong five years post-diagnosis.  Looked at that way, we have a lot to celebrate and he still has options!  I think I will put the bottle in the fridge after all :-) 






  

Wednesday, 4 December 2013

negative to positive...for now, at least

What does it take to turn us from being a bit grumpy into feeling much happier?

  • some sunshine and blue skies
  • a photo featured in the Guardian Weekend Magazine
  • a "Topping Out" ceremony for Osney Lock Hydro, a community-led and funded renewable energy scheme on the River Thames, close to home, which we have supported
  • an evening get-together in Bristol with friends from my time at PINS, including drinks in the Old Fish Market, a good meal at Giuseppe's On The Steps, and an overnight stay sharing a city centre apartment with Baz and Lynne who were very good company

  • seeing Steve's mum looking relaxed and happy
  • having an enjoyable lunch with our son Jack before returning home to Oxford this evening
With help from family and friends, we have gone from feeling negative to positive in the space of a few days.  How we feel tomorrow will depend on the outcome of Steve's hospital appointment.

Assessment Day is nigh.....




Thursday, 28 November 2013

little sparks of light in the gloom

Oxford has been shrouded in low, dense, dull cloud for the last few days and I think it's affected our mood and how we feel physically.

We both have low level infections which seem to be lingering - Steve still has sore eyes and a runny nose which is making him cough from time to time; I still have the remains of a cough and lack energy.  I wasn't totally surprised to hear that a recent blood donation was rejected because of a "non-specific laboratory result"...No health significance - just a bug - but a nuisance, nonetheless.

When you don't feel 100%, little things which wouldn't normally bother you become annoying or frustrating - like the watch repair that takes a month instead of 7-10 days; the camera won in a competition at the end of September which has yet to appear; the lightbulb that leaps out of the fitting and blows the fuse; the Saniflo unit that won't turn off....grumble, grumble, grumble...


Image courtesy of Dawn Machell

Such trivial matters pale into insignificance in the face of whats happened in the last few days to the mesothelioma community.  Every day Facebook has brought news of the death of yet more meso warriors, leaving behind heartbroken families deprived of their loved ones.  It seems to be a particularly bad time at the moment....

...And then John Bridle writes in the Times that 90% of all asbestos claims are spurious!  If you believe that, then please inform yourself about this man's vested interests, his own spurious claims and criminal record by clicking here .

We were hoping to enjoy a special event yesterday, but sadly that didn't come to fruition, so these last few days there has been little to distract us  - or me at least - from thoughts of Steve's assessment next week.

However, there have been some little sparks of light to brighten up the gloom.  Good news on the mesothelioma front for warriors Lou in Australia and for Tess in Kent following their scans and meetings with consultants.  Good news on the photography front too, with the sale of a print from a recent exhibition; two images published on 1X.com in one day and a couple of images to be featured in Digital Camera magazine in the New Year.  

The first Christmas card has arrived, as have most of the presents ordered online.  At least it feels like we have made a start on our festive preparations now!

If the weather forecast is to be believed, we might see a patch of blue sky and some sunshine in the coming days. And there's a social event in Bristol to look forward to next week, before Assessment Day.  

Time to put Mrs Grumpy back in the box and start picking up on those positive thoughts again.....





Monday, 25 November 2013

What? Where? Who?

Less than two weeks to go until Steve's next hospital assessment, so we've been keeping busy to distract ourselves...What have we been up to?

A day out in London, starting with lunch in Gordon's wine bar near Charing Cross, followed by a visit to the National Portrait Gallery to see the Taylor Wessing Photographic Portrait exhibition.  Fortified by coffee and cake, we then walked up Charing Cross Road, and took some pictures of the brightly coloured buildings in St Giles before catching the bus along Oxford Street to do some window shopping in John Lewis and refresh ourselves with tea for two.  



Back on the bus to Westminster to meet up with daughter Katie after work, then a stroll down the Embankment to join in the relaunch of Tate Britain.  The new entrance looks wonderful, but I think we will need to go back when it's less busy in order to appreciated it properly.  



We should have looked at the re-hung galleries, but ended up in the cafe catching up on Katie's news over a couple of bottles of wine and some food - much more sociable.  The art can wait until the next visit....



What else?  An afternoon photo shoot at the Bishop Edward King Chapel, Ripon College near Oxford - an exquisite building which was shortlisted for this year's RIBA Stirling Prize. We almost abandoned the jaunt due to the awful weather in the morning, but the clouds cleared, the rain stopped and the light was wonderful - great for taking shots!





The weekend kicked off with a social event - one of my friends celebrating 25 years with the Council. Congratulations Tom!  



And a chance to meet up with other old friends from my former life...  Some people seemed a little worried seeing me there on my own, but all looked delighted and relieved when I told them Steve is still going strong!

The festive season is now in full swing here in Oxford - Light Night celebrations on Friday evening; the city centre closed to traffic for the children's lantern parade 



a Christmas market, live music on stage and traditional fun fair in St Giles; 




the Ashmolean Museum open until late hosting more live music ranging from fiddlers to country jazz via an all-comers choir and a whole host of other cultural events over the weekend.  



Too much choice and not enough time!  But everyone seemed to be enjoying themselves.

And so to the Who? bit in the title of today's post. Over the weekend, we've enjoyed a "Dr Who" fest celebrating 50 years since the series started broadcasting.  I feel very old admitting that we remember the first Dr Who and very young admitting that we still enjoy it!  




In between watching rugby on TV and keeping up with the Ashes cricket series, Steve has designed this year's Christmas card and printed the proto type which means it's time for me to write the annual newsletter, looking back over the last 12 months. The last day for posting to our friends in Australia is 5 December -the same day as Steve's next assessment...do I wait for the assessment result and miss the post?  Or catch the post and miss out the most important bit of news? Decisions, decisions...

The assessment appointment letter came in this morning's post.  Steve seems to just take it in his stride.  I'm the one who starts getting a bit jittery at the thought of what we are going to hear.  Perhaps this would be a good time to think about Christmas presents instead!  

Big hug to all the meso warriors, especially those going through chemo at the moment and those who have been told that no further treatment will be made available to them - how cruel to take away hope....

Last but not least, if you have or care for someone with mesothelioma, please read Mavis's blog posted 24 November if you haven't done so already.  There is some interesting information about possible changes to the law in the UK which may facilitate research; a warning about toys made in China which contain asbestos, currently on sale in Australia (and maybe elsewhere - who knows?) and the transcript of a speech given by Chris Winter of the Independent Asbestos Training Advisors (IATP) about raising awareness of the risks associated with asbestos.  You can access the page by clicking here  

Stay safe!



Monday, 18 November 2013

All's well that ends well

There are times when everything goes to plan.  And there are times when the unexpected pushes us off track.  We've just had one of those weeks when few things went to plan but, in the end, everything worked out better than might have been expected. 

The intention was to spend some time in Bristol, putting in four days work to help our son finish off some DIY projects which need more than one pair of hands.  However, before driving anywhere we had to get the car repaired following a close encounter with a high kerb the weekend before.  The car wasn't ready until the afternoon and as a result we didn't arrive in Bristol until teatime on Day 1.  Having unloaded the car, unpacked and sorted ourselves out, we decided it was too late to start any DIY - we would move on to Plan B and begin fresh on Day 2.

Plan B was soon abandoned when we picked up messages; one from friends in America to say that their daughter Erin would be visiting Oxford and would like to meet up with us. Oh dear....there we were in Bristol with no contact details for Erin to say sorry, but we are not at home in Oxford to greet you....

The other message was from the 24 Hours in Bristol Photography Competition people asking for a high res version of an image I had entered into the competition so that it could be printed on Thursday and displayed in the exhibition which launched on Friday.  There we were in Bristol; the high res version of the picture was on the computer in Oxford.  What to do?

After a bit of agonising, we were on to Plan C: drive back to Oxford the following morning, sort out the picture and return to Bristol after lunch to fit in some DIY on what remained of the day.  It seemed a bit extravagant in terms of time and money to do the round trip between Oxford and Bristol on Day 2, but it turned out to be a good call.  

As we opened the front door at home, we were greeted by a unexpected sight - one of our neighbour's cats sitting on the stairs!  She must have invited herself in the day before while we were going backwards and forwards loading up the car, and we hadn't noticed.  Considering the cat had been locked in an unfamiliar house for nearly 24 hours without food or drink, she was remarkably relaxed; happy to see us and in no great hurry to leave.  We dread to think what would have greeted us had we not returned home for four days...

We also picked up a message on the answer phone from Steve's brother with a request to sort out some financial business for Steve's mum in Bristol.  Had we not returned home briefly on Day 2, we wouldn't have picked up the message for several days, too late to do anything about it whilst in Bristol.

There was just enough time on our return to Bristol to take a carload of wood and cardboard to the recycling centre before it closed, but that was all we managed to do on the DIY front on Day 2. However, we did have a very enjoyable meal out that night with Diana, another member of the Wride family based in Bristol and catch up with her news!

Both Steve and I were still having problems with our joints (my back, Steve's knee) the following morning.  Rather than aggravate our aches and pains, Steve went off in the morning to sort out some financial business for his mum, while Jack and I stocked up on food, and we all went to visit Steve's mum in the afternoon to bring her up to date with family news.  

So...No DIY whatsoever on Day 3...However, our nephew and his partner had invited us to a meal that evening, and it was wonderful to meet up with them and their lovely daughter Esme.  



Steve was honoured to be asked to read the bedtime story!

Somehow, it didn't seem worth starting any DIY on Day 4, knowing there wouldn't be enough time to make any significant progress.  Instead we had a family bonding session on the sofa watching the England-New Zealand International rugby match together; took our time to pack and load the car and drove back to Oxford in a relaxed mood on Saturday in the early evening.

The answer phone light was flashing when we arrived home. It was a message from Erin, the daughter of our American friends to say that she would still be in Oxford until Sunday and hoped that her and her boyfriend Forest could visit us before returning to London that night.  

Having restocked with food the next day, we were delighted to greet them for afternoon tea on Sunday and spent a happy few hours catching up with their lives.  Around 6.30 pm, Forest mentioned that they had left their luggage in a locker at the Ashmolean Museum to save carrying it round.  What time did the museum close on Sundays?  We checked online and it was already closed, so no way to rescue bags from the lockers that night.  The Museum closes on Monday too, but hopefully there would be staff around.

If you are a regular reader of the blog, you will know that after several months of on-off work, we now have a refurbished room to accommodate staying guests and a new sofa bed in the loft for overflow visitors.  Last night, they both came into their own, providing a safe haven for Erin and Forest until they were able to rescue their luggage this morning from the Ashmolean Museum and return to University in London.  We had the pleasure of their company for longer than expected, and they had a good night's sleep, so the new guest room and sofa bed in the loft are a success!

So...All's well that ends well as they say. The DIY will just have to wait for another time....  

I hope that by my next post we will both be 100% fit (or as fit as Steve can be with mesothelioma) with no more aching knees/backs and that a minor mouth infection and sniffle which have been bothering Steve for the last few days will have cleared up. He's convinced it's nothing to do with the mesothelioma (and I'm sure he's right).  However, anything that causes coughing starts alarm bells ringing, so I will be keeping a beady eye on Steve in the meantime!

With another busy week ahead, there's a lot to get through today catching up on the home front after our short break in Bristol and weekend visitors, and reading about what's happened to the other meso warriors over the last week...but here's a special big hug for Mavis who is recovering from a nasty fall, and for Jan, Lou and Ray who are all on chemo  xx

Monday, 11 November 2013

Progressing the "to do" list, a couple of treats and some very important advice

Although knocked sideways by Tuesday's sad news about Australian meso warrior Steve Cook, we've managed to make some progress on the mundane "to do" list over the last week.  Not very exciting but it has to be done....

I donated blood for the first time in almost 12 months, as we've not been around for sessions held earlier in the year. The old camp beds have been replaced by moulded plastic chairs which tilt back to put you at the best angle to get the blood flowing.  A bit like sitting in a giant baby car seat....

The new mattress was delivered; LED lights fixed behind the bed head/storage screen and mirrors attached to the inside of the wardrobe door - at long last the guest bedroom is properly finished, ready for our staying visitors...

The mountain of ironing has shrunk to a molehill; the last of the summer clothes packed away and winter woolies pulled out - we are as ready as we'll ever be for whatever the weather throws at us...

The Oxford Photographic Society Annual Exhibition finished on Friday; framed prints have been collected and stored away; new prints prepared and artist statement written for the next exhibition which opens in January at the Link Gallery, John Radcliffe Hospital here in Oxford....

I attended the local Cancer Services Patient and Carers meeting to discuss the results of the National Cancer Patient Experience Survey 2012/13. Mesothelioma is not listed as a separate cancer in its own right, but is lumped in with lung cancer even though it can occur elsewhere in the body. Consequently, it's impossible to pull out any useful information specific to meso - what a pity....

...However, one item caught my eye.  All cancer patient are supposed to be offered a written care plan.  This should reflect a holistic approach to care, encompassing not only a treatment plan but any other matters affecting the individual concerned including, for example, emotional trauma; financial concerns; advice about diet, exercise, suitable complementary therapies; right down to things like who will look after the dog/cat/budgie if I can't?  

I don't recall Steve ever being offered such a care plan.  In fact, I'm not even sure who is our key worker/clinical nurse specialist to ask about such a plan - and I thought we were on the ball when it comes to Steve's cancer.  It would appear not.....

Our reward for progressing the mundane stuff was a trip to the cinema to see "Gravity" in 3D - put on the 3D specs and I defy you not to duck and dive as things leap out of the screen at you!  

We also treated ourselves to a couple of tickets to see Bristol Rugby play London Welsh at the Kassam Stadium, home of Oxford United FC.  Not so much of a treat as we hoped, as Bristol (Steve's team) didn't exactly cover themselves in glory.  Still, the sun shone and we didn't freeze which is what usually happens on those rare occasions when we watch ruby live....




It was also very moving to stand in a crowd of 1800 or so during the two minutes silence for Remberence Sunday...

Unfortunately, a close encounter with a high kerb in the scrum to get out of the car park at the end of the match has left the car's exhaust sounding rather loud.  Another job to add to this week's much longer "to do" list....

It's not just the car that's playing up.  Steve's knee and my lower back have been causing us problems, so we've had to resort to paracetamol and ibuprofen gel to keep us going. On top of that, I've come down with a nasty cold.  

Still, at least we have been able to get on and do a few things, unlike those meso warriors going through tough times. Sending you all a big hug x 

Last but not least, thanks to IATP (Independent Asbestos Training Advisors) for sending us a supply of the "Take 5 and Stay Alive" leaflet produced by the British Lung Foundation. Go to website by clicking HERE and watch the video.  It's only 30 seconds long.  You can spare that amount of time.  Do it NOW please....it might save your life, or the life of someone you love...








Wednesday, 6 November 2013

Steve Cook's mesothelioma journey in Australia is over - and another sad day for the meso community...

When people meet my Steve for the first time, they are usually surprised at how well and "normal" he looks and acts, even though he has an incurable cancer.  They must wonder why we grasp at life with such vigour and are reluctant to make plans or give commitments beyond the date of his next assessment - three months at most. 

Indeed, there are times when we are so busy enjoying life that that I almost forget the time bomb ticking away inside him.  Then something happens, and we are jolted back to the horrible reality.  Another of those "wake up" calls came today, with the news that another meso warrior's journey is over.

When someone appears to be well, it's hard to appreciate that mesothelioma is a very aggressive cancer.  Once the disease flares up and takes hold, the person can go downhill very, very quickly - in a matter of weeks - even if they are a strong fighter with a very positive mental attitude, like Steve Cook in Australia.  Steve's journey started when he was diagnosed with mesothelioma in May 2012. Read his blog by clicking the link on the right under "We are not alone".  

To those newly diagnosed with meso, Steve Cook wrote in his blog "keep your chin up and don’t let anyone around you be negative – they will take vibes from you, so if you are positive then they will be able to cope as well.  It is a bugger of a cancer that should never happen but there is nothing you can do about it so accept it and enjoy whatever time you have left with your loved ones"  And in between chemo regimes and chest drains, that's just what he did.  Steve and his wife Gail travelled to Canada, went skiing and sailing, renovated their house and did a lot more besides.  Awesome!  


Steve and Gail Cook flying high

Steve and Gail on the slopes

Towards the end of August this year, Steve was told that his tumour was stable except for one area of thickening outside the chest wall on the left hand side.  This would need to be investigated in case the cancer had travelled through the chest wall and was attacking the soft tissue in the muscle.  

Although subsequent tests in early September showed no evidence of malignancy, a week later in mid-September, Steve was hospitalised with breathing difficulties.  More tests revealed that the cancer appeared to have spread to the pericardium - the membrane with covers the heart and the major blood vessels.  He was told that he had a few months to live at best.  

Back in hospital again in late September, Steve found out that he had pulmonary embolisms (blockage in the artery supplying the heart); a large pleural effusion (fluid) on the right side and a partially collapsed right lung.  The mesothelioma was progressing rapidly.  Not one to be beaten easily, Steve agreed to have a pleural drain fitted and oxygen delivered so that he could go home, where the renovation work was almost completed.  He was still looking forward to a skiing trip to Canada with Gail, in December.

Steve wrote on 4 October "We are still being very positive – I firmly believe that once the pleural drain is put in, I will get my breathing under control – this rotten cancer will get me in the end but I intend to go out kicking and enjoying life with Gail and all our family and friends while we can – there will be enough time for tears later on – not now"  And then he and Gail went off on a cruise around Tasmania, caught up with family and friends and "had a ball" to use his words.


Sadly, during the last week of October Steve's health deteriorated further and he needed oxygen most of the time, except when seated or lying down doing nothing at all.  The trip to Canada was cancelled.  However, after a few days of feeling better, Steve wrote in his blog on 30 October, "all in all a positive few  days – let’s hope that all this works and will give me some quality of life for whatever time I have left. Still feeling positive – a good  mental attitude always helps to overcome or to cope with physical problem" 

....Those words gave us all hope.  Hope which was dashed today with the news that he had died at 4.30 pm, Oz time. We all knew it was inevitable, but Steve's untimely death only twelve short weeks since he was told his condition was stable, still came as a shock.  Our heart goes out to Gail and his family and friends, in Australia and in the cyber world.

I would not usually dwell on the death of a meso warrior. None of us - with or without mesothelioma - likes to be reminded of our mortality. However, Steve Cook's determination to enjoy life to the full, fight cancer and stay positive is lesson for us all - and a message that deserves to be broadcast widely.  

So with tears in my eyes, a heavy heart but the utmost admiration for your positivity, courage and inspiration, I dedicate today's blog to you Steve and your support team in Australia, with much love and respect from your namesake in the UK, Steve and his wife Linda xx

Cheers, mate


Saturday, 2 November 2013

an early morning, a late night and some bits in between

Most people with mesothelioma seem to have scans every three months to check what's happening inside, whereas Steve's three monthly hospital assessment has usually been preceded by an X-ray.  Scans have only been used when the X-ray shows up something of concern, as a base line before treatment and to assess response during and following a chemo regime.  

It looks like the local approach is now shifting towards what happens elsewhere, with more frequent scans to get a better picture of any changes.  Steve's previous scan was earlier this year in late February after finishing six cycles of chemo (pemetrexed and carboplatin).  X-rays in June and September have now been followed up by another scan, as Dr T thought it was about time to compare what's happening now with the one taken 8 months ago.  

Nothing to eat for two hours before the scan appointment scheduled for 9.45 am, hence what was (for us) an early morning!  The scan itself was uneventful, apart from the usual problem of not being able to find a vein first time round for the injection of contrast dye which helps the radiologist measure areas of pleural thickening and nodules of cancer growth.

The late night referred to in the title of today's blog was after a day out in London.  We arrived in time for an early lunch at Gordon's Wine Bar in Villiers Street - reputedly the oldest wine bar in London and worth seeking out if you are in the Charing Cross area. 



Then on to the National Gallery to see "Facing the Modern" an exhibition of portraits painted in Vienna around the turn of the century, including work by Gustav Klimpt and Egon Schiele (making up for just missing the Schiele exhibition on our recent visit to Budapest).  



Fortified by coffee and pastries, we headed off to Portland Place for a behind the scenes tour of Broadcasting House, the home of BBC Radio and Music, the World Service and News.  




It was fascinating to look down into the news room level from the media cafe and see the weather forecast being presented in its own dedicated studio space in the big new extension which opened earlier this year.  



We also sat in the BBC Radio Theatre in old Broadcasting House, where news bulletins had been broadcast throughout the war, even as a bomb ripped through the building.  



For those brave (or foolhardy) enough to have a go, there were opportunities to read the news or present the weather to camera, or take part in a short radio play, with sound effects.  




Sadly, the photo opportunities were few and far between, whilst security was tighter than expected (we were frisked and had bags scanned twice, even though we had been under the eye of two tour guides the whole time).  However, it was a fascinating insight into modern day broadcasting that seemed more meaningful when you were there, rather than reading about it online.




Our last event of the day was attending the launch of the RPS International Exhibition of Images for the Screen, which includes a couple of my photos.  An interesting collection of images, although we were surprised by the repetition of some of popular themes. 

After a long and eventful day out, we were dozing in our seats on the train journey home.  Really must learn to pace ourselves a bit better...  But perhaps it was the early morning start of the previous day catching up with us!

The bits in between include a continuation of the house de-clutter, with more stuff recycled, more bags to the charity shop, and some odds and ends sold on eBay, including a family-sized suit case which will (we were told by the successful bidder) be stuffed with clothes and taken to an orphanage in India.  Had we known that, we'd have happily donated the case to such a good cause!

No blood, but with lots of sweat, a few choice words and just a few millimetres to spare, we managed to get the ottoman bed base upstairs and into the guest bed room, moving that project another small step forward.  When the new mattress is delivered next week, it will be finished at long last! 

It's now less than five weeks to Steve's next assessment on 5 December, coincidentally the same day that fellow meso warrior Mavis (diagnosed in June 2009, like Steve) will be having her assessment.  We will all be going through "scanxiety" together.  Now the days are shorter and the weather colder, it's time to plan lots of things to do indoors to distract ourselves in the meantime. 

As always, we are thinking of fellow meso warriors and carers, especially those having it tough for whatever reason. I said in my last post that there are moments when Steve feels guilty about how well he's doing when so many others are going through difficult and heartbreaking times.  I was touched and relieved by those who responded that we shouldn't feel that way. Thank you all so much.  

Enjoy the fireworks but stay safe!

Post Scrip:  I have added another meso blog to the collection.  Click on "Lorraine's Journey with mesothelioma" under We Are Not Alone (top right) to find out more about how mesothelioma is treated in China


Sunday, 27 October 2013

photos, furniture and friends

Life has calmed down a little this last week....the lull before the storm, quite literally as it happens.

....Early in the week, we sorted through our photos from the 24 hours in Bristol photo shoot, selecting, processing and uploading our submissions to the competition website. If you are interested, you can see Steve's images by clicking here and mine by clicking here.

Over the last few days, we have been playing musical furniture - shifting things around to be ready for the arrival of the new bed for the guest room, which was delivered yesterday.  That doesn't sound like much... However, it involved disassembling and reassembling two sofa beds; carrying one downstairs ready to be collected by its new owner after a successful sale on eBay and lifting the other to its new home up in the loft, which doubles as bedroom when family and friends stay.  

The last piece of the jigsaw involves carrying the new ottoman bed base upstairs to the guest room. Neither of us are very enthusiastic about this lift, so I am putting it off by writing the blog and Steve is searching the weather channels for the latest news on the big storm that is due to pass over the southern part of the UK during the next 24 hours.

The social highlight of the week was a visit from Rufus, who (many years ago) used to live a few doors away but is now based in Edinburgh with his family.  It was lovely to catch up with his news over coffee and pastries yesterday morning.  With good friends you just slip back into conversation as if the intervening years didn't exist....

We have also caught up with what's happened to our cyber friends in the meso community.  There has been some good news - Tess's review showed stable disease and she is now looking forward to the next three months! 

Other news is not so good.  Lou in Australia had to postpone her planned chemo due to low blood counts, but thankfully is better now and feels ready for the next round.  Amanda's Ray is back on chemo and suffering the side effects.  On top of pains and drains, Jan has come down with a cold - how unfair is that?   Sending our love to all of you.  

Steve in Oz enjoyed a cruise with his wife Gail, but his health is deteriorating rapidly (or as he puts it "the Fat Lady is tuning up...") and he is now having to consider those end of life issues we all hate to think about.  Steve, we send a BIG hug and lots of love to you and Gail from the other side of the world xxx

Closer to home, Mavis's news that her meso has started growing again, in spite of zapping it with another chemo regime (the fourth since diagnosis) has cast a shadow over the mesothelioma community and beyond.  She is going to take a break from treatment, enjoy the festive season and have another scan in the New Year before deciding the next step.

We feel close to all our meso friends, sharing each other's roller coaster of life, but we feel particularly close to Mavis as she was diagnosed with this cancer in June 2009, the same as Steve.  We have been traveling the journey together since finding each other in the virtual world. Mavis, get ready for a big kiss and cuddle coming on the wind from Oxford to you from us xx

As I write, another meso warrior is close to death, at home, surrounded by his family.  They have been telling him how much they love him and that he can "go to sleep" and be a star in the sky when he is ready, because they love him that much....It's his birthday today; they think he wants to wait until today before he lets go of life....

I usually manage to find something positive to say in my blog posts, but it's not always so easy. Today has been one of those difficult days, for obvious reasons. Not for the first time, Steve says he feels guilty that he is still able to enjoy life while others with mesothelioma are having such a tough time.  I feel the same, which is why today's post may sound a bit subdued.  

However, life goes on.  We can't put off carrying the bed upstairs any longer.  Onwards and upwards, as they say. Here's hoping that the next post will bring more good news than bad.  

The wind is already quite frisky here.  If we had any, we would be battening down the hatches ready for tonight's gales and storms.  Take care if you have to go out there tonight or early tomorrow.  Stay safe!