Tuesday 16 December 2014

Five and a half years, and a small number of months

Five and a half years: looking back

Today is exactly five and a half years since Steve found out he had mesothelioma and was told he had six months - maybe a year - to live, by the doctor who gave him the news.  Luckily, Dr T (the consultant we saw subsequently) told us not to give too much weight to the statistics - individual circumstances vary greatly, as we were to find out.  

If you have read the treatment timeline posted last week, you will know that since diagnosis Steve has taken part in three early phase clinical trials, had one standard chemo regime, two radiotherapy regimes and one surgical procedure (pleurodesis).  

2009 Radiotherapy
By my rough calculation these treatments, plus the time it takes to recover from side effects, have effectively taken about a year and a half out of our lives since then, leaving us with four "good" years during which we have enjoyed life to the full - albeit with the roller coaster of emotions associated with his three monthly assessments, scans and X-ray results.

So what have we done during these good times?
  • tried some new experiences, including floating over the landscape in hot air balloons; doing a short but exciting circuit in a helicopter; skimming the waves in a RIB (Rigid Inflatable Boat); looping the loop and other aerobatic manoeuvres in a light aircraft and trying our hands at clay pigeon shooting 
Steve and the Chipmunk August 2010
  • been very sociable: meeting up with friends in the UK and abroad for special occasions, such as anniversaries, birthdays, house and garden-warmings, a wedding (and sadly, several funerals) and also simply to enjoy good company in our home, theirs, or on holiday
Birthday lunch March 2012
  • been travelling together abroad, including trips to Spain (Bilbao, Madrid, Toledo, Valencia); Italy (Venice, Rome, Siena, Pisa, Lucca, and rural Tuscany); France (Paris, Avignon, Arles, Marseille, Carcassonne, The Camargue, the Cevennes, the Luberon); plus Brussels in Belgium, Santorini in Greece, Amsterdam in Holland, Budapest in Hungary, Heidelberg in Germany and Marrakesh in Morocco
Marrakech May 2012
  • had fun visiting family and friends and exploring the UK, including trips to Wales, the Lake District, Yorkshire, Derbyshire, Suffolk, Norfolk, Sussex, the West County and numerous visits to Manchester, London and Bristol
Yorkshire April 2011
  • enjoyed some excellent sporting events, including cheering on the England team in person at international rugby and cricket matches; watching motor sports including the Goodwood Revival and Festival of Speed, Silverstone classic car races and Prescott Hill Climb; supporting our friend Rob in the Brompton folding bike world championships; having a bit of a flutter at the races, including witnessing wonder horse Frankel win his last race unbeaten
Rome England v Italy 6 Nations Rugby February 2012
  • indulged our passion for photography and in the process achieved our Royal Photographic Society Associate distinctions; had works selected for exhibition in venues around the UK and abroad; won awards and gold medals in various competitions and salons; had features in photography magazines, work published in photography books and the UK national press (not forgetting the local paper in Heidelberg!) 
March 2010
  • helped our kids work on their respective homes: knocking down walls; helping assemble flat pack furniture; painting and decorating; laying floors etc, as well as creating a guest bedroom and carrying out a complete garden makeover in our own home
Helping with the kitchen renovation, London March 2013
  • enjoyed a number of exhibitions; visited National Trust properties (not forgetting the tea rooms!); looked over London from the top of the Shard and Orbit at the Olympic Park and over Portsmouth from the top of the Spinnaker Tower
View from the Shard May 2013
  • we even started our own business, which is still rolling along albeit very slowly at the moment due to Steve's health issues
That's quite a lot to cram into four years, but Steve was feeling good, no pain or breathing problems and we made the most of it.  Sadly, that's no longer the case....

A small number of months: facing the future

This is not an easy post to write.  We have been living with this knowledge for a few weeks but only now feel able to share it with you, after telling our children, other family members and some of our very close friends.  You may have already guessed what is coming, especially those who have been through or are going through something similar.

If you have been following the blog, you will be aware that Steve's health started deteriorating slowly from October 2013 when his meso started to progress again after initial shrinkage with chemotherapy.  This deterioration has accelerated rapidly over the last few months. 

16 December 2014 - 5.5 year survivor
The cancer has grown through his chest wall and the lump has been painful, although thankfully that pain didn't last long and now seems to be under control.  It has also spread to his liver.

He lacks energy and naps during the day.  It's hard to know at this stage whether that is the cancer progressing, a continuing side effect of the last drug trial or the cumulative impact of radiotherapy which has yet to peak.  

He gets breathless on exertion, but is still able to walk some distance as long as he paces himself.  However, it is a relief to have a blue badge which gives us more options when looking for somewhere to park the car.

After being "0" (i.e. asymptomatic) for over five years, his "performance status" is now considered to be "2" (ambulatory and capable of all self-care, but unable to carry out work activities, up and about for more than 50% of the day). 

He has lost a significant amount of weight in recent months and now weighs in around 55 kilos; losing more than 5% of his weight within the last six months - a clear signal that something is very wrong, although at the time we did not appreciate what a serious sign this is.  

However, a new word has now entered our vocabulary: "cachectic".  Wikipedia defines cachexia as the loss of body mass that cannot be reversed nutritionally. Even if the person eats more calories, lean body mass will be lost as a result of fatty tissue and skeletal muscle being depleted.  

It is considered to be a positive risk factor for death, meaning that if a patent is cachectic, the chance of death from the underlying condition - in Steve's case mesothelioma - is increased dramatically.  Cachexia is often seen in end-stage cancer; 80% of patients with terminal cancer are cachectic.  

We are doing what we can to keep his calorie intake high with a change in diet to full fat milk, cream, butter, lots of sweet sticky things as well as nutritious food which is high in calories, like nuts and oily fish.  He is taking Complan as a supplement to his regular meals and medication to help speed the passage of food through the gut so he doesn't feel bloated after a small meal but can carry on eating. 

However, there is no getting a way from it; things are not looking good.  

Steve has been through a lot this year, with two drug trials and now radiotherapy.  At the moment, he can't contemplate having more treatment that would make him weaker or be likely to cause side effects that would severely compromise his quality of life, as has happened earlier this year.  In any event, he is not considered strong enough to take part in another clinical trial in his current condition.  

When asked what we could expect if Steve had no further treatment following the completion of radiotherapy, the doctor said - as you would expect - that's it's impossible to predict with 100% confidence.  However, his best guess is that Steve's life expectancy is in the region of "a small number of months".  

You will know from reading about the last five years or so, that we have not been unduly concerned about statistics and survival rates but have tried to adopt a very positive attitude about his cancer, living with it, not dying from it.  He is one of the very fortunate 8% of mesothelioma patients still alive more than five years post-diagnosis, so has already helped change the statistics and extend the tail end on the right side of the median curve.  However, given the big picture, the way Steve feels and the evidence of our own eyes - lumps and weight loss - it seems likely that the doctor is right.  This will probably be Steve's last Christmas.

We have not lost hope....there is still a little glimmer that could be fanned into a big flame, in the right circumstances. Although the side effects of radiotherapy are likely to make him feels worse before he feels better, he may yet improve in the New Year.  In that event, he may feel up to re-challenge his meso with pemetrexed or be eligible for another drug trial.  

However, it looks like time is short and we are not holding our breath.  For now, the emphasis is on ensuring he remains pain-free and keeping up his body mass.  At present, we are managing to do both those things, which is encouraging.  And after shutting ourselves away from friends for the duration of the last drug trial and beyond, we have now rediscovered the pleasures of being in the company of good friends, even if fatigue rules out late nights, big parties and more energetic pursuits.  About time we started acting our age anyway....

I hope that reading about the good times we've had since diagnosis in June 2009 helps balance out the news in the second part of this post.  It has helped me put things in perspective and as many people have pointed out, we have some wonderful memories to help us through the coming months.  

When speaking to us, no one has yet used the phrase that we should be thinking about "quality rather than quantity" of life, but it's the elephant in the room.  We shall just have to see how far we can make a small number of months stretch, and ensure that we make the most of what time Steve has left in the best way possible for how he's feeling at any given time.

Big hugs to all you wonderful people to say thanks for your support and good wishes, and to all the meso warriors, their loved ones, and those who have lost their loved ones   xxx

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