Monday 30 December 2013

Recipe for a memorable Christmas


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.....


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.  

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!  

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 get the picture.....

This will give you a flavour'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 


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.....