Wednesday 31 December 2014

a family Christmas

This year, Christmas has been very much a family affair.  

Our son and daughter arrived the day before Christmas Eve. We were joined after Christmas by our daughter's partner, followed soon after by our nephew, his partner and their daughter who came for lunch on Monday and stayed until early evening.  So...the house has been full of life, laughter and activity much of the time, with just a few pauses for naps - for all of us, not just Steve...

We have enjoyed good company, good food and wine, some fantastic presents, family games, a Boxing Day walk terminating at a riverside pub for mulled wine, and lots of laughter, hugs and kisses.  

We even managed a family day trip to Bristol to visit Steve's mum in her nursing home.  Although she was asleep, Steve's kiss woke her up.  She smiled and seemed to recognise everyone, which was the best Christmas present she could have given us. 

We're looking forward to a meal with our dear friends Jonathan and Sally tomorrow, and a get together here with Steve's brother and his wife on Friday. Just what we need to set us up for the New Year. 

We were very touched by a blog post about Steve written by our friend Linda Reinstein of the Asbestos Disease Awareness Association (ADAO) which you can read here.  I particularly like the quote which finishes the blog post.

We stopped taking life for granted when Steve was first diagnosed with mesothelioma. Since then, our time horizon has rarely looked beyond the date of his next assessment. Now, even more, we take each day as it comes - we can usually find something to celebrate.  

Over the last week, Steve's appetite has improved; he has not only maintained his weight but has also gained several pounds; the growth of hair on his head and face is noticeable, he has now passed the peak period for fatigue associated with radiotherapy so we hope his energy levels will improve a little in the coming days.  

Whatever 2015 has in store for us, I hope there will always be a little voice at the end of each day which says I'll try again tomorrow....

Last but not least, we wish you and your loved ones good health, happiness, fulfilment, courage and comfort in the coming twelve months - with love from us xxx

Tuesday 23 December 2014

This is for you - you wonderful people!

This is for you, you wonderful people - our family and friends!

You wonderful people who send such thoughtful, caring and uplifting messages via email, PMs and comments on Facebook, letters, notes in Christmas cards and phone calls...

You wonderful people who turn up on the doorstep in person and via couriers bearing gifts to tempt Steve's tastebuds - boxes and hampers of delicious morsels and home-made mince pies....

You wonderful people who offer to provide practical help as well as emotional support....

You wonderful people who send us cyber hugs through space from afar, and give us real hugs in person that feel just a little tighter and last just a little longer than normal, while you whisper "Remember, you are not alone" ....

You have no idea how much this means to us and how much we appreciate it!  

All the positive thoughts and good vibrations seem to be working...  Steve's appetite is much improved; he is enjoying his food and has even regained a little weight.  His hair is growing slowly but surely; the eyebrows are making a faint but welcome appearance and it looks like he may need a shave soon...

Our friend Sally has suggested we give you a Christmas present - a picture of Steve wearing bright colours and smiling, as she saw him the other evening.  I'll see what I can do...

In the meantime, this is from us to wonderful people - just a small way to say thank you and show our appreciation for all you support and kindness

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

Monday 15 December 2014

Liaisons with LINAC

Steve has been having a liaison with LINAC - a Linear Particle Accelerator which generates X-rays and high energy electrons for medicinal purses in radiotherapy - which has been zapping the tumours growing through his chest wall. This is a palliative treatment which we hope will stop the external lumps getting bigger and causing pain.  Four sessions on consecutive days last week with the final session today, the last scheduled hospital visit of 2014.  

He has been diligently rubbing in the E45 cream, and it seems to have helped. It was not until this morning that he noticed the skin on his chest looking a bit pink. As yet, no nausea or shortness of breath which are other potential side effects if the beams hit healthy lung or liver tissue.  

He has been tired, but whether that is due to the radiotherapy, ongoing side effects of the last drug trial, cancer progression, or simply not sleeping well and having to set the alarm for 6 am to arrive in hospital in time for the early morning appointments, we can't tell.  Probably a bit of everything....

We can expect the side effects of radiotherapy to peak up to two weeks after treatment finishes, so I don't think we will be dancing in the streets over Christmas/New Year.  However, if the treatment delivers continuing pain relief that's a sacrifice well worth making.

After one of last week's sessions, we stayed in hospital for Steve's post-trial four week review.  All the usual tests, plus a chat with Dr Ioannnis - probably the last time we will see him as he is moving on to a new post at Southampton in 2015. We wished him well!

Two interesting points worth reporting from that conversation. Firstly, we talked about the side effects of the drug trial continuing, even though its now four weeks since Steve took his last dose of AZD0424.  The research team have already noticed this with other patients.  The trial drug has a "long tail" of side effects; longer than other drugs, and particularly long for a drug delivered orally, rather than by infusion.  But they will wear off eventually....and indeed today, four days later, Steve has a little bit beard growth and it looks like his eyebrow hair may be growing again.  

The other point was about immunotherapy drug trials which are showing much promise in the treatment of a range of cancers including mesothelioma.  We asked why they all appeared to exclude people with a medical history of auto-immune diseases, which includes people with arthritis like Steve.  

It seems that in activating the body's natural immune system, these drugs can also cause a flare up or significant worsening of any autoimmune disease, which can be a real problem for the patient.  Such reactions are also recorded as a side effect of the drug which makes it more difficult to license.  Any pharma company which allowed people with an autoimmune disease to take part in such a trial will therefore put themselves at a disadvantage in a highly competitive and lucrative market.  So its a financial consideration for the manufacturer as well as a risk for the patient.  

That's all for today, other than to say a couple of heart felt "thank you"s.  Firstly, to everyone for all the good wishes and lovely words of support which are arriving with your Christmas cards; they bring tears to our eyes but a warm glow to our hearts.  How lucky we are to have such wonderful friends.  

Secondly, to Ian, Ruth, Anne, Colin and Emily who succeeded in tempting us out of hiding where we have been for the last six weeks or so, with the promise of a meal, good company and a lift there and back again. The evening spent with you guys really lifted our spirits which have been pretty low recently, topped off perfectly with news of Em's pregnancy. We are so very, very pleased for you and Nick - you will make wonderful parents!

Another blog post to follow tomorrow, a day to look back and look forward...

Monday 8 December 2014

Treatment timeline

Over the last week, we have talked (and listened) to many people about Steve's mesothelioma - GP, counsellor, radiotherapist, medical oncologist, clinical oncologist and palliative care nurse aka Macmillan nurse. Most of these sessions have kicked off with a review of Steve's treatment since diagnosis in June 2009; you should see his hospital files - very thick and heavy....

As Steve starts his next treatment regime tomorrow, this seems like the right moment to set it out in a timeline which pulls together all the clinical trials, chemotherapy and medical procedures he has been through since June 2009, together with the related side effects and outcomes.  

Having everything up together in one blog post will be a handy summary for us the next time we have to talk someone through what's happened up to now.  Some readers may find it of interest and assistance if they are contemplating having similar treatment.  If nothing else, it will set the scene for a future blog post and help you understand why Steve feels the way he does right now....

June 2009

  • Pleurodesis - draining fluid which had built up between the two layers of the pleura around the lung and sticking the pleura back together using sterile talc. Biopsy taken at the same time. Four days in hospital. Oramorph given for pain relief (and laxative for constipation, a side effect of the pain relief medication) as part of a clinical trial comparing the effectiveness of oramorph to paracetamol for pain relief.  Stitches to the "ports" removed the following week.  Biopsy results showed mesothelioma.
July 2009
  • Radiotherapy to the pleurodesis ports using a Linear Particle Accelerator (LINAC) - a total of four visits; one to prepare for treatment and three to zap the ports to reduce the risks of the cancer seeding along the line of the chest drain and endoscopy camera.  Aqueous cream applied to the site of the therapy to reduce soreness. No noticeable tiredness or nausea.
July - November 2009
  • Velcade Early Phase Clinical Trial - aka Bortezomib, a biological therapy which inhibits how proteasomes (which control cell growth and function) work - plus cisplatin.  Six 21 day cycles of treatment, with Velcade and cisplatin on day 1, followed by Velcade on its own on days 4, 8 and 11, then a 10 day "rest" period.  Side effects: nausea and vomiting; tiredness; numbness in feet (peripheral neuropathy); taste changes; loss of appetite; anaemia; muscle cramps in joints.  Two enforced breaks in treatment regime due to toxicity - impact on white blood cells - one break of a fortnight, the other of a week.  Nausea and peripheral neuropathy continued post-trial for some time (the latter getting worse before it got better). 
December 2009 - September 2012 : No treatment, disease stable

October 2012- February 2013
  • Chemotherapy - pemetrexed (aka Alimta) and carboplatin.  Six 21 day cycles of treatment, with infusions of chemo at the start of each cycle.  The regime was extended by an unplanned break in treatment arising due to appointment problems over the Christmas/New Year holiday.  Side effects: mouth ulcers; fatigue; taste changes; loss of appetite; breathlessness; itchy rash; nose bleeds; anaemia requiring blood transfusions on two separate occasions. Outcome: reduction in pleural thickening after four cycles of treatment, followed by further reduction in pleural thickening after two more cycles of treatment.
March - September 2013: No treatment, disease stable

October 2013: Scan showed disease progression - minor pleural thickening and a new lymph node about 1.5 cm in size noted.  

December 2013: treatment options discussed

January 2014: decision to take part in the VanSel Early Phase drug trial, dose escalation study

February - April 2014
  • VanSel - a combination of two biological therapies. Vandetanib - 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.  Steve completed two cycles on this regime - the first cycle was 42 days long, including a "loading" dose of vandetanib every day for 14 days before taking both vandetanib and selumetanib for 28 days.  Cycle 2 was 28 days long, taking both drugs every day.  The trial period was extended with a week's break from treatment as the drugs were affecting Steve's heart rhythm.  Trial resumed on a reduced dose of vandetanib.   Other main side effects: a severe skin rash (mainly on his face, chest and neck) which required steroid cream medication and antibiotic lotion; fatigue; loss of appetite; stomach cramps; sickness; daily diarrhoea; some hair loss; sensitivity to UV light.  Outcome: disease progression over and above trial protocol guidelines
May - August 2014: continued disease progression; cancer has grown through the chest wall and now visible externally as a lump

September - November 2014: 
  • AZD 0424 Early Phase drug trial - a 28 day cycle taking the trial drug every day.  The drug is a tyrosine kinase inhibitor which slows down proteins which are involved in cell growth.  Cancer cells have a higher level of these proteins than normal cells. The drug blocks these proteins, preventing the delivery of nutrients to cancer cells. Steve completed the first 28 day cycle, and 21 days of the second cycle before being taken off the drug as the scan showed disease progression and spread to his liver, as well as experiencing pain for the first time from the lump on his chest, which continued to grow in spite of the trial drug. Side effects: fatigue; major hair loss; stomach cramps; loss of appetite. 
December 2014: 
  • palliative radiotherapy for pain relief. One "planning session" followed by five consecutive days of treatment starting tomorrow.  We can expect increasing tiredness with each treatment session, peaking about two weeks after treatment around Christmas.  We will also need to slop on the E45 cream to deal with the effects of the radiotherapy on his skin.  There may be some nausea and breathlessness as a result of the beam affecting healthy tissue in the lung and liver, adjacent to diseased areas.  


After a long period of stability followed by some shrinkage, Steve's mesothelioma has been growing since October 2013. Although he has taken part in two early phase clinical trials this year, the disease continues to progress and spread.  He has recently experienced pain for the first time where the cancer has grown through the chest wall, and there has been significant weight loss. He now weighs about 55 kilos.   He has yet to recover from the side effects of the most recent trial which has left him feeling weak and tired.  It's been a tough year....

What we can expect after radiotherapy and where we go from here is something for blog post in the future.  

What is clear from writing - and now re-reading - this treatment timeline is that Steve has been very brave and endured some horrible debilitating side effects of drug trials over the last 12 months, with no personal benefits.  Each drug trial seems more difficult to endure and bounce back from.  The gaps between drug trials and chemo regimes when we can enjoy a good quality of life are getting shorter.  

The balance of power between Steve and his cancer has shifted over the last year, accelerating over the last 6-8 weeks.  The mesothelioma journey has changed direction and moved on to a new phase.  We are now focussed on thinking about how to manage this for the best.  More of that in a future blog post.  

Thank you so much for all with wonderful messages of support and offers of practical help which are very much appreciated.  

Lastly, a big hug to all the meso warriors around the world, their families and friends, especially Margaret in Canada xxxx