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

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 you....you wonderful people - just a small way to say thank you and show our appreciation for all you support and kindness

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

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...

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.  

Overview

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

going to get zapped......

Back in hospital again today, this time to discuss plans to use radiotherapy to zap the lump on Steve's chest where it has grown through the chest wall and bubbled up under the skin. It's a palliative treatment which should help with the pain he has experienced occasionally since the end of the clinical trial two weeks ago.   

We looked at the lump on the scan.  You can see where it has squeezed through the rib cage and spread out over the exterior of his chest rather than growing inside.  It was also possible to make out the much smaller lump lower down, closer to his liver, which is also trying to make its escape from inside the chest cavity.  

The plan is to have five radiotherapy sessions, with the beams zapping the lumps at an angle close to the horizontal.  This will minimise the risk of hitting healthy lung and liver tissue inside the chest, below the lumps.  Side effects are tiredness, probably a bit of "sunburn", possibly a dry cough and breathlessness as a result of the beam being close to the lung, and may be some nausea if it touches the liver.  These side effects will "resolve" (to use the doctor's words) in a few weeks.

There will be an appointment probably some time next week to plan the treatment, have a scan to locate exactly where the beams will hit the body and mark Steve's chest with reference points to get it on target every time.  This will be followed by five consecutive days of zapping.

In discussion with the registrar - a lovely doctor called Rebecca - we were told they had not been able track down the records of Steve's previous radiotherapy in 2009, when the tube ports had been zapped following the pleurodesis procedure to drain fluid from the pleural cavity.  

Luckily, there are photos on the blog of the site of the 2009 radiotherapy (on a different part of his body) which I was able to show to the doctor and the consultant.  Using those blog photos helped establish that the cancer has not seeded along the line of the ports and that they will not be treating the same area again, which is something they were concerned about.  

The consultant mentioned Steve's weight loss when she examined him.  He now weighs only 55.5 kilos, even though his appetite has improved and he has been eating more.  On the way back from the hospital we bought Complan supplement drink, full fat milk and doughnuts.  Here's hoping that piling on the calories will help put a bit more flesh on his bones and give him some more energy.  He is still dropping off to sleep when sitting quietly....

The good news is that Steve's Disabled Parking Permit arrived in the post while we were out and our lovely neighbour Marie signed for the recorded delivery on our behalf.  That's a weight off our minds!  The business accounts have been finished and sent off to the accountant to do Wride and Company end of year returns to HMRC.  Another job ticked off the "putting our affairs in order" checklist.  Next week promises to be another busy one with appointments of one sort or another on most days.  At least we will be able to put the disabled parking permit to good use on our trips out!

The care plan is coming together...

After last Thursday's bad news, we have been keeping an even closer eye on Steve's condition hoping that it would improve a little now that he's stopped taking the trial drug AZD0424.   

His stomach is not churning to the same extent as it was before, although it's still not "normal".  There's been no noticeable change in respect of hair loss/regrowth.  The fatigue continues - he feels washed out and drained; it's a big effort to get going in the morning and keep going over the course of the day.  I often notice that he has dropped off to sleep when sitting quietly or watching TV.  He's sleeping now, as I type.....

Although his appetite has improved, he continues to lose weight; now down to 56 kilos (about 8 stone 11 lbs) with his clothes on.  Never one to carry much spare flesh, the body in the mirror is not the one he is used to seeing, he's so thin. He's frightened that he's wasting away...

We had both been hoping to see a noticeable improvement in all these respects, but perhaps we have been expecting too much, too soon - after all, it's only been eight days since the last dose and he had taken the trial drug every day for 44 days up until 13 November.  I imagine there's still a lot of it in his system.  

But other things are coming together.  On Monday, we had a long session with the GP - ironically, the same doctor who told him to go away and come back in a fortnight if he still felt unwell when he first went to the surgery in 2009 complaining of the symptoms of which later led to the mesothelioma diagnosis. This time around, she could not have been more helpful and supportive.  As a result we know have the start of a care plan coming together....

Taking paracetamol in addition to the codeine seems to be keeping the pain under control.  The doctor has prescribed other medication to deal with constipation - a side effect of the pain relief medication.  She has also requested blood tests to have a "baseline" against which Steve's condition can be monitored in the future.  That will happen next Monday.

We discussed what to do if Steve has a serious problem with pain or breathing in the night or at weekends.  The answer was to phone the surgery in the first instance.  His medical file has been flagged up as a vulnerable person, so if we need to use the out-of-hours service, the on-call doctor will be alerted to his particular circumstances.  

After a couple of false starts, the GP has completed a form which has enabled his application for a disabled parking permit to be fast-tracked.  The Blue Badge Team tell us that it's at the printers so should be with us shortly. That's a huge relief; we have had to leave the car several streets away on a number of occasions recently due to on-street parking pressure close to home.  With a Blue Badge, we will be able to leave it on yellow lines opposite the house without fear of getting a parking ticket if there is no space available in the residents bays.

The GP has also completed a DS1500 form.  This is used to fast-track applications for benefits such as attendance allowance for people who are terminally ill.  Steve's had one twice before, once on diagnosis and one a few years later, but we have not needed to use it as he's been feeling good for five years or so. Sadly, that's no longer the case, so it's good to have it for when we need to use it....

The GP has been in touch with the Community Care Team (aka Macmillan nurses) at Sobell House, the hospice next to the Churchill Cancer Centre.  We have an appointment to visit in a couple of weeks time to meet the team and find out more about the services they offer.  We also know that we can drop into the Maggies Cancer Advice Centre close by, if we need other sorts of support.  

More appointments have now come through, one in the Radiotherapy Clinic to discuss zapping the lump on Steve's chest before it gets any bigger and causes more pain, and another with Dr T,  Steve's oncology consultant, to talk about whether he has any other treatment options (apart from radiotherapy to the lump) and, if so, what they involve. Although it won't be easy, Steve needs to have this conversation so he knows where he is now, can think about the next stage of the journey and can decide what feels right for him.  

At the moment, I don't think he can contemplate more chemo, he feels so weak.  He's already taken part in two drug trials this year without any personal benefit, just horrible side effects.  Whether he will feel up to having another go in the New Year (assuming he is eligible for a trial that is recruiting) only time will tell. In any event, we have to go back to the Early Phase Clinical Trial Unit in mid-December for the four week post-trial interview/check up, so maybe we can find out then if anything suitable is in the pipeline.

Strange to think that only eight short weeks ago we were in Heidelberg, exploring the old town on foot and enjoying the Heidelberg Herbst festival in the company of some of our wonderful photography friends.  The rate of Steve's deterioration since then, especially over the last few weeks, has been alarming. However, we have felt very supported and loved by all your messages of support and this has helped us enormously, even though we have yet to reply to you individually...Thank you, thank you, thank you.

Last but not least, if you are a regular reader of the blog, you will know that over the last five years and a half we have also been supported by the Meso Warriors on Facebook, including a wonderful lady called Debbie Brewer who lost her battle with mesothelioma in June 2013.  This weekend there is a party to celebrate the 18th birthday of Kieran, Debbie's youngest son.  

Kieran, your mum would have been so very proud of you and your achievements, as are we and all the warriors.  Sending you a big hug from us.  Have fun with the warriors  at the party tomorrow night.  So sorry we can't be there in the flesh, but we will raise a glass to you instead!  

Take a deep breath....

Before you read this, take a deep breath.  The news is not good, as we suspected....

It's five years and five months almost to the day since Steve was diagnosed with mesothelioma.  Unlike many others in his position, in all that time he has not experienced any significant pain directly related to his cancer - just the occasional twinge. Until Thursday night into Friday morning, when he was woken up by a severe pain in his chest roughly where the lump is growing. Touching it was agony - like being hit by lightning, as he describes it.  Paracetamol didn't touch it.  Eventually he dropped off to sleep again, and all was well when he woke up...apart from being tired.

However, this was a new development in his meso journey, so after breakfast we phoned the hospital to say that we wanted to see a doctor when we called at the Early Phase Trials Unit later that morning to pick up the capsules missing from his trial drug supply due to an error by Pharmacy (see my last post for the start of that particular saga...)

The green bag with his bottle of capsules was waiting for us in the Trials Unit when we arrived.  The trial nurse had taken the precaution of checking that the bottle contained the correct number of capsules.  Unbelievably, pharmacy had messed up again. Too many capsules this time!  

This might sound funny, but in fact it's very serious.  Each time medicine is dispensed by one pharmacist, it's then checked by two others before being given to the patient.  In Steve's case, for the third time in a row, the dispenser and two checkers had made a mistake with the number of capsules put in the bottle.  

No harm done this time, but as the doctor pointed out, we are on the ball.  Others who are distracted or drugged up with pain relief might not notice. The potential consequences are very, very serious.  There will be an investigation. Here's hoping lessons will be learned and it doesn't happen again.  One mistake is bad enough, but three in a row is unforgivable.

Because he knew we were coming in to talk about the pain as well as collect the remaining trial drug capsules, Dr Ioannis had asked radiology to fast track Steve's scan results.  The full detailed report has yet to be written, but the summary was enough for Steve to be taken off the trial there and then. AZD0424 hasn't worked for Steve.  

Internally, pleural thickening has increased - not galloping away, but measurable after only six weeks.  The lump on his chest is the cancer which has grown through the chest wall and bubbled up on the outside of the rib cage, cracking a rib in the process - the pain Steve felt when lifting a heavy bag of cement back in July, which we thought was a pulled muscle. We had been expecting to hear this news - me for quite a while, Steve only acknowledging it in the last week or two - but it's still a bit of a blow.

The radiologist has also noted a lesion on his liver which has grown since the last scan (when it was too small to measure, and might have been something else) and a another lesion on his liver which did not show up at all on the last scan.  This came as a nasty surprise.  Not only is the cancer growing, it's spread outside the right lung.  This is not the news we wanted to hear.  

Obviously, there is no point in Steve finishing the clinical trial. After all the fuss with the pharmacy about being given the wrong number of capsules, we left them on the bed as we walked out of the Unit.  

So....what now?  

Probably radiotherapy on the lump to see if that will break it down and alleviate the pain, which is probably due to the tumour pressing on a nerve.  

Codeine tablets for pain relief.  They have not worked - the pain was back last night and the codeine brought no relief - so we will need to ask our GP for something stronger or different.  Hoping to be seen as an urgent case on Monday; the first "normal" appointment slot is in two weeks time.  That came as a nasty shock too....

A break from any other form of intervention treatment.  It will take 6-8 weeks for the trial drug to finally work its way out of Steve's system and this must happen before he would be able to go on any other drug trial.  

This news has been a wake up call - as if we needed one.  We have decided to use this time to sort things out while Steve is still relatively "well" (seems strange to say that, given what's happened...) Hopefully, over the coming month or two his hair will start growing back, the fatigue will lift, his appetite will return full time and he will put some weight back on....then the neighbours might recognise him again and he will stop thinking of himself as looking like "Gollum" from Lord of the Rings.  

We also hope he will be well enough to make the round trip to Bristol to say goodbye to his mum, who is fading fast.  I doubt whether she would know who he is, even if she recognised him now he is so thin and lacking hair.  However, it would give Steve some peace of mind to see her again, probably for the last time.

We all have those periods in life when it feels like everything that can go wrong, does go wrong.  We are certainly having one now.  Not surprisingly, we are both physically and emotionally drained.  And poor Steve still has the pain to contend with until the right pain relief is found.  

Christmas will be low key - we don't have the energy or inclination to design, print and write Christmas cards like we usually do; make or hunt down the perfect present, or write a long newsy letter telling far flung friends what has happened to us in 2014.  People will have to rely on the blog to know what's happening health-wise and a charitable donation from us in lieu of sending out cards.  Our aim is to minimise stress and strain while Steve recovers from the side effects of the last clinical trial and thinks about where he goes from here.  

Without doubt, we are now on the next stage of this long mesothelioma journey.  The spread of the cancer has upped the stakes, but this meso warrior is not out of the game yet. We will relax, regroup, recharge the batteries over the next couple of months; enjoy a family Christmas and plot the strategy for the next step of the journey.  Then...when we are ready...we will call your bet Leo and raise the stake money. You won't know what's hit you when the radiotherapy starts...and that's just the beginning of the fight back - always assuming Steve wants, and is able, to carry on.  

Last but not least, to all our friends in the flesh and in our Facebook groups, thank you, thank you, thank you for all the love, good wishes and messages of support.  They bring a tear to the eye, but are very much appreciated.  And a big hug to all the meso warriors around the world, whatever stage of the journey you are on xx

Frustration, frustration, frustration....

As part of the AZD0424 clinical trial, Steve takes 3 capsules of the trial drug every day.  No eating for 2 hours before he takes the dose or one hour after.  And the dose is supposed to be taken within the same hour slot every day.

With almost two more weeks to go in cycle 2, he should have had 36 tablets left after taking yesterday's dose.  However, the bottle felt a bit light when he picked it up, so he counted the number of capsules left. There were 28 fewer than there should have been.  That's a lot....In fact it's the equivalent of one capsule a day for each day of the 28 day cycle.    

Steve is very particular about taking his drugs.  Three capsules fit into the lid of the bottle exactly, so if he tried to take more he would soon notice.  He also records in his red book every dose.  We know he has not taken more than he should.  We also know he has not lost any.  

Several phone calls to the hospital yesterday to alert them to the problem and discuss what might have happened.  We went there today to pick up the missing 28 day tablets, thinking it would be a quick in and out job.  Not so.

Not a single parking space to be found when we arrived.  We ended up parking on a sliver of rough ground next to the staff car park, the opposite side of the hospital complex to the Cancer Centre and a long trek to the Early Phase Trials Unit. And it was raining...

After more questions, Steve's bottle containing the remaining capsules - including today's dose - was taken back to the pharmacy and we waited, and waited and waited for the bottle to be returned with the correct number of capsules. Dose time passed. So did the hour's window when he was supposed to take the medication.  

The bottle eventually came back from the pharmacy at 1 o'clock, and Steve had today's dose an hour and a half after he was supposed to take it....Plus no food for Steve until 2 pm at the earliest.  Not good for someone who is losing weight.  Very frustrating...At least the pharmacy admitted it was their mistake, not Steve's.

Then came the next bit of bad news.  The bottle contained the 28 "missing" capsules, but not the ones that had been in there when it had left our hands, so Steve is still short of medication.  The bottle would have to be returned to the pharmacy to be re-issued with the correct number of capsules.  You would think it would be checked very carefully after one mishap.  Not so.  We will have to go back to hospital again tomorrow to pick up...

By the time we arrived home, there wasn't a single parking space in our street, or the one opposite, so we eventually left the car three streets away and had to walk some distance back to our house, by this time very hungry.  On getting inside Steve realised he had left his bag in the car, with money, treatment diary, and other important stuff and had to do another round trip to retrieve it....

Just about enough time to grab some lunch before heading out again to an afternoon appointment.

Not a good day.

There was one positive thing....Dr Ioanis popped his head into the room to say hello when he saw us in hospital.  He hopes Steve's scan results will be available by next week.  However, one of the radiologists is on leave so they are stretched at the moment, particularly as scans for trial patients are looked at very thoroughly, with more measurements to check than a "normal" scan.   

He also said that if the cancer has grown through the chest wall as it appears, but has not grown anywhere else, then Steve may be able to continue the trial - if he wants to - while they deal with the chest lump separately. 

So we will just have to sit tight and wait and see what happens next.  Another week in limbo...

Clinical trial AZD0424 Cycle 2 - another week over....

Steve has finished the second week of Cycle 2 of the AZD0424 clinical trial.  

He had his scan this morning.

He has started Cycle 2, week three.

However, his potassium levels are low, he has lost more weight and the lump on his chest appears to be getting bigger.

We will not know for sure what's happening with the mesothelioma until we get the scan results - maybe next week, maybe the week after - however, the signs are not good.

Apologies for the brevity of today's post; we have a lot of things on our minds at present.....

Clinical trial AZD0424 Cycle 2: hopes, hair loss and halloween

We weren't sure whether Steve would go on to Cycle 2 of the drug trial last week, bearing in mind his side effects and the lump on his chest.  However, all the tests were fine and he was given the go ahead last Tuesday, together with a new bottle of capsules to see him through the next 28 days.

Dr Ioanis examined and measured the lump on Steve's chest and, like Dr Toby the week before, thought it was the cancer growing.  He suggested zapping the lump with radiotherapy and would find out whether that could happen while Steve was taking part in the early phase clinical trial of AZD0424.

Steve still harbours the hope that the lump is not the meso grown through his chest wall but is caused by something else.  He will only be convinced if a biopsy shows it to be malignant or it can be identified on a scan as growing out from the pleural thickening.  In my heart, I share his hope.....but my head tells me not to hold my breath. However, I can understand why he doesn't want to have radiotherapy until there is no doubt that the lump is malignant.  

Steve is due a scan some time in the next 7 days, but the appointment letter has yet to arrive.  We chased it up again at this morning's weekly check up and were told that the scan is booked in for next Tuesday and the results usually take a fortnight to come back.  

So in three weeks time, we ought to know two things for sure - firstly, whether there has been any disease progression since Steve start on the drug trial on 30 September and secondly, whether the lump we can see on his chest is connected with, and growing out from, the mesothelioma in the lining of the lung.  

In the meantime, the hair loss (a side effect of the trial drug) continues - Steve now has no eye lashes, few eyebrow hairs and very little hair left on his head.  Strangely, his body hair is unaffected...

Here he is pre-trial

Here he is on 28 October  (I quite like his Mohican!)  

Most of the hair you can see in last Tuesday's photo has now been shed and we are trying to get used to the new "norm" of baldness.  Steve still feels self-conscious and is reluctant go out, even wearing a hat.  As a result, we hid away on Halloween - his excuse being that he didn't want to frighten the little trick or treaters.  

It was also a bit of a poignant day for us for another reason - it would have been Steve's dad's 90th birthday this year...you can't help wonder how much longer he would have lived had he not been exposed to asbestos in the Bristol shipyards pre-WW2 and killed by mesothelioma in his early sixties...

The combination of three consecutive days in hospital and treatment side effects meant that the rest of last week has been low key.  Unusually for us, we turned down an invitation to a friend's big birthday party on Saturday, with a promise that we would have a second celebration with them when Steve feels better.

Not going out has meant that we have caught up with a few things indoors; paperwork for our tax returns has been collected up and posted to the accountant; a few things have been passed on to others through "Freegle" and eBay as part of the ongoing declutter and garage clear out; I have done some preparation for a work-related trip to Guernsey next week.  

We have met our "new" neighbours...in fact they are the owners of the house next door which has been rented out for the last few years.  They are now living in it themselves.  To our delight, they plan to do a bit of garden maintenance, including getting someone in to thin and trim the tree which overhangs half of our garden, creating dense shade in the summer.  Maybe we will see a bit more sunshine in 2015, when we sit outside enjoying the fruits of this year's garden makeover labours!

We were back to hospital again this morning for the regular weekly check up.  All is well, including Steve's bloods which were are examined closely to make sure he doesn't have an infection given the catarrh he's been troubled with recently. So week 2 of cycle 2 has started...another week to get used to the new norm.  Still can't think ahead as far as Christmas...

However, we will be raising a glass tonight to celebrate with fellow meso blogger Mavis, whose tumour has shrunk by well over 50% as a result of taking part in an immunotherapy clinical trial at the Royal Marsden.  It gives hope to the other warriors around the world!  I just hope that they can get it designated as a Promising Innovative Medicine (PIM) under the Early Access to Medicine Scheme so that Steve can be treated with it, as his history of arthritis means he's excluded from the drug trial itself.  

Mavis - should you choose to take it - here is your next mission impossible: please get the makers of your drug to apply for PIM designation! If any one can do it, you can xx

Last week of cycle 1 and a bit of a downer

Winge alert....

For various reasons, this last week of Cycle 1 of the AZ0424 clinical trial has been a bit of a downer, so if you are here expecting all things positive probably best look away now and return when we have bounced back (which we will).  

The doctor's remark last Tuesday that the lump on Steve's chest is probably the cancer growing has overshadowed the week.  Not the sort of thing you want to hear when on a drug trial which you hope will have the opposite effect.  

Although we have seen it on scans and it has knocked us for six emotionally, up until now Steve's mesothelioma has not impacted on him physically to any significant degree. However, the lump is different. You can see it and touch it. Thankfully it doesn't hurt. This makes us question whether it is the cancer growing, or something else...not that we have been able to identify what else might cause a lump of this size which is hard to the touch and not malleable.  If the doctor is right, then we now have very tangible evidence - and a constant reminder - of his disease (as if we needed one).  

The other big downer is hair loss - a side effect of the trial drug.  The hair on Steve's head started coming out in odd strands last weekend, but is now shedding freely.  He had put off washing his hair, but when he could leave it no longer the result was what he feared - lots of hairs including large clumps left in the bottom of the bath. His eyebrows (a very expressive part of his face) are also thinning.  There are hairs, hairs everywhere....

I'm sure Steve will come to terms with it, as so many others have had to when loosing their hair as a result of cancer treatment.  However, it is taking time to adjust to his new look. Time to go shopping for hats?  The hair loss is bound to get worse before it gets better.  The advice we have found online about coping with the impact of cancer-related hair loss on self-esteem seems to be aimed exclusively at women rather than men, which wound Steve up a bit. It's a people thing not a gender thing, isn't it?

The other side effects of taking part in the clinical trial are ongoing, including tiredness and effect on his digestive system.  In terms of fatigue, mornings are generally not too bad (relatively speaking).  However, from lunchtime onwards, Steve feels lethargic at best.  More often than not, he dozing or sleeping...In terms of his digestive system, the loud stomach gurgles continue but now accompanied by a build up of gas which makes him feel bloated and uncomfortable.  This is now affecting his appetite, which is a concern given his recent weight loss.  

Then there is the cough....Not all the time, but when he has a coughing session, it often makes him feel sick.  The bucket is back beside the bed for emergencies.

The significant deterioration in Steve's mum's health has been another cause for family concern.  She is now receiving 24 hour nursing care in Bristol.  Every time the phone rings, it flashes across our minds whether this is the call from the nursing home we are preparing ourselves for...

Naturally, we would like to visit her more often and spend more time with her.  However, it's difficult now Steve is on a drug trial with frequent hospital appointments plus the side effects of the trial drug, including fatigue which makes long sessions behind the wheel not such a good idea.  

Now the start of Cycle 2 of the drug trial is imminent, the thought of three consecutive days in hospital does not fill us with joy.  Mentally, it's looming large even though only one visit is scheduled to be a long 12-13 hour shift...

Overarching all of these concerns is a mix of feelings about future treatment options.  Immunotherapy is an area of clinical research which is proving very promising for people with mesothelioma, including fellow meso warrior Mavis who is doing brilliantly on her drug trial. Well done Mavis!  We are thrilled to read of significant tumour shrinkage and hope that many more people will be able to benefit from taking part in trials of this immunotherapy drug and similar ones.  

However, every time I research immunotherapy trials, my heart sinks when I read that people with a medical history of autoimmune disease - including arthritis, like Steve - are specifically excluded from taking part.  It feels like someone is shining a torch showing you the way ahead out of a long dark tunnel, but at the same time putting a barrier in the way to prevent you heading in that direction.  Heartbreaking and frustrating.....

OK. Rant over.  It hasn't all been bad.... 

We escaped the worst of the weather when the remains of hurricane Gonzalo crossed the UK at the start of the week....

To our amazement, some of the plants in the garden are flowering, whilst others are holding on to their blooms. Colour in the garden this time of the year is a bonus we weren't expecting....

Steve and I were delighted that our photos were included in a feature about our photography friends get-together in Heidelberg last month, which was published in a German newspaper.  Thank you Isa for setting it up!

Steve's picture of other photographers is bottom left, mine - an architectural abstract - is bottom right (ignore the credits - the journalist didn't get it quite right!)  

We seemed to have survived our flu jabs with minimal side effects, so we are set up to tackle the worst of the winter illnesses although hoping it won't be necessary.  

I'm hoping that by my next post, the good news will outweigh the downside. Life is a bit of a roller coaster at the best of times.  We will be on the up again soon I hope.  Big hug to all the meso warriors around the world, especially those  on the down slope of the roller coaster x