Two years on....

Well Steve, we have reached the second anniversary of your death. Your last Valentine to me has pride of place on the mantelpiece, as it did last year and the year before.

I was stirred yesterday morning by bright sunshine slanting through the blinds and it took a few seconds to wake up properly before the significance of the date kicked in.  I confess I shed a tear on reading lovely messages from friends who also remembered this anniversary.  

However, it wasn't all sadness.  Daughter Katie joined me at lunchtime, and we walked, talked and dined together and toasted your memory.  She has returned to London this morning, so a chance to finish this post to mark the second anniversary of loosing you. 

Unlike last year, the run up to this anniversary has not been nearly as stressful.  Maybe its because I’ve been through many of those “first time without you” experiences and survived, even though its been difficult at times.....such as when I walked out of a Cuban music evening barely able to hold back the tears - the only person trying to salsa without a partner - remembering how much we enjoyed dancing together....

While the Steve-shaped hole in my life is still there, the void is slowly being filled with new experiences of living as a single person.  

I’ve carried on our grown up gap year, traveling far and wide over the last 12 months: Namibia, Scotland, Portugal, France and New York City, as well as getting out and about in the UK, meeting up with old friends, making new friends and enjoying some quality time with our grown up kids along the way.

The camera has been my companion on these travels, and photography is still proving to be a creative and social lifeline, as it was when you were alive and going through treatment.  For some reason, a few days ago I was flicking through old photos of our travels together, and I came across this one of you in Spain, at the memorial to those innocent people who lost their lives in the Madrid train bombings back in 2004, before you were diagnosed with terminal cancer.  The image has taken on a new significance now, watching you walk away from me in the darkness, but towards the light flooding in from above.  Sadness and hope at the same time.

I’m still in touch with the Meso Warriors - mainly those who have lost their loved ones to mesothelioma - but also the amazing Mavis Nye who was diagnosed with the disease around the same time as you but is now in remission after taking part in an immunotherapy drug trial which has given hope to so many.  Mavis has even started up her own charity to help others in her position and their families.  I was honoured to be invited to the launch and to take some photos to record the launch last December.

People like Mavis and Linda Reinstein in the States (who runs the Asbestos Disease Awareness Organisation) have my utmost admiration for the work they do.  I sometimes feel guilty that I’m not more actively involved in mesothelioma awareness advocacy, especially now this blog is only updated infrequently.  However, people still read it from time to time, and I’ve had nice messages from those who have found it helpful, including a lady who had no idea what to expect at the Coroner’s Inquest but didn’t find it quite so scary after reading about my experience on the blog, so I guess that’s a contribution in some small way....

The idea of creating a public artwork as a permanent memorial to you has moved forward another baby step, with discussions about its form (a "human" sundial) and location in what will be a little pocket park next to the Thames at the Osney Lock.  However, its taking a while to get lottery funding for the overall landscaping scheme, and there is no sign of anything happening on the ground as yet. Hopefully, some time over the next 12 months, the project will reach fruition, or at least take another step forward....

Who knows what the next year will bring to me, our family and the wider mesothelioma community?  It will be interesting to look back in 12 months time to find out.  Until then - your memory will not fade away.... 

Endings, beginnings and ongoings

Since I last posted, some things have come to an end; other things are beginning and, as usual, ongoing stuff keeps rolling along...

Work on the garden makeover had ground to a halt due to the non-delivery of some railway sleepers needed for the raised beds.  However, it sprang back into action on Tuesday after the missing parts of the order were eventually found and delivered.  Our contractor worked hard for the rest of last week to make up for lost time.  To our delight, their part of the job was completed on Saturday!

We now have a natural stone paved area where we can sit out, entertain and enjoy the fresh air, bordered by raised beds which will help maintenance and give us better views of smaller plants, while the railway sleeper edges will provide somewhere to put down cups of tea/coffee and glasses of wine while relaxing, as well as extra perching space for guests if needed.  It's looking a bit bare at the moment, but is a perfect blank canvas on which to "paint" with plant colours, textures and shapes...the fun bit!  

It feels like we have now said goodbye to the old garden and are ready to make a fresh start on the new one, re-stocking with plants which will give us year round colour, interest and hopefully attract wildlife.

Last Friday was my appointment for a nerve root block injection in the spine, carried out under a local anaesthetic with the help of X-rays to guide the needle.  The procedure didn't hurt as much as we were warned it might (indeed, I wondered whether the radiologist had hit the target....) However, the difference since then is noticeable, so it must have worked!   

It's been so long since I was able to stand still for any length of time, or carry even a small weight any distance without having spasms of pain in my rear end and down my leg. The nerve root block has meant I can now do simple things like stand in a queue or spend an afternoon walking around with a camera without constantly being on the lookout for somewhere to sit down and stretch out for a bit of pain relief. Feeling like a new woman enjoying a fresh start!  

Friday's hospital appointment meant that we were unable to attend the funeral of our friend and fellow mesothelioma blogger Tess.  As you would expect, it was a very emotional occasion by all accounts, not just for Tess's family but also for another meso blogger friend of ours, Mavis, who together with her husband Ray, represented the meso warriors and carers.  Everyday since then has brought news of yet another warrior loosing their life to this awful disease.  Too many life endings, which could have been avoided...But the fight goes on, as does the search for a cure.

Being at home on Friday afternoon also meant that Steve was around to take an unexpected phone call from Dr Nick at the Clinical Trials Units with news that a slot has become available on an early phase trial.  It's another dose escalation study (like the VanSel trial Steve took part in at the start of 2014) which has now reached the stage where patients are noticing side effects - usually a sign that the drug is working.  

We have been to the hospital today to find out more about the trial on offer, and took the opportunity to ask about an immunotherapy drug MK3475 which is currently showing promise for mesothelioma in a trial at the Royal Marsden. It was interesting - but frustrating - to learn that the same drug is being trialled here in Oxford, but only for people with myeloma.  If he wanted to follow it up, Steve would have to be referred to the Marsden to see if he would meet the criteria for MK3475 (he may not be eligible due to a history of autoimmune disease) and, if so, whether a slot is likely to become available in the near future.

We've come home with the paperwork for the trial on offer in Oxford and Steve is thinking currently considering whether he wants to take part.  As Dr Nick says, the Oxford trial may buy him some more time...by then, immunotherapy drugs may become more readily and widely available.  

Other benefits of taking part in the Oxford trial is our proximity and ease of access to the Churchill Cancer Centre (the thought of traveling around the M25 to reach the Royal Marsden does not fill us with joy) and the fact that after treatment on and off over the last five years, we know the local team well and they know us.  In addition, the scan to assess whether there has been a response to treatment happens after the first four week cycle of treatment, so not as long to wait to find out the results as on the VanSel trial when it was 10 weeks before we found out that it hadn't worked.  

If Steve decides to go ahead, I will post details of the trial on the blog at some point in the future.  However, we may find ourselves starting a new treatment at the start of October.  Another new beginning in the pipeline...

In the meantime, life goes on and with it annual events to enjoy.  Last Sunday, we hand a wonderful day out at the Prescott Speed Hill Climb set in glorious Costwolds countryside near Cheltenham.

We are not petrol heads, but there is something very exciting about watching classic cars like Bugattis and other fast sports/racing cars, roaring up a short course which rises 200ft in just 1127 yards via a series of hairpin bends.  Lots of good viewpoints along the course and the opportunity to see the cars up close and personal in the paddock.  And enjoy an ice cream under cloudless blue skies in bright sunshine.  A great day out!

On Monday and Tuesday last week, the annual St Giles fair came to Oxford.  For just two days St Giles, one of the city's dignified historic streets, is closed to traffic becomes a chaos of loud noise, brash colours, bright lights, the smell of street food cooking and a heaving mass of people.  The contrast with a "normal" weekday couldn't be more marked!  

If you are ever in Oxford on the first Monday and Tuesday after the first Sunday in September, you must visit.

On Friday evening, we went to a party in the Divinity Schools, at the Bodleian Library to celebrate the launch of the Oxford Photography Festival 

We're looking forward to seeing some of the exhibitions over the next couple of weeks.  This is the first such festival. Here's hoping it will be the beginning of another Oxford tradition!

Saturday and Sunday saw yet another annual event in the city - Oxford Open Doors, when buildings not normally open to the public welcome visitors free of charge.  Open Doors also coincides with our son's birthday, so after traveling from London where he is currently based to Bristol where his flat is, he came to join us in Oxford to finish off his birthday celebration.  

We spend yesterday morning visiting places of interest.  Steve joined us for lunch in one of Oxford's oldest pubs, the Turf Tavern a 13th century ale house tucked away in the historic heart of the city, followed by a slow walk home to a birthday tea.  

So...all in all, a packed week, with endings, beginnings and lots of ongoings....

If Steve decides to take part in the Oxford drug trial, the next two weeks will be just as busy, if not busier as we try to fit in all those things which need starting or finishing in the foreseeable future.  Once the trial begins, life would once again revolve around hospital visits and watching, waiting and dealing with side effects and everything else is likely to go on the back burner.  We shall see...

Highs, lows, some progress and some frustrations!

Over the last 10 days or so, it feels like we have been through the whole gamut of emotions...

Last weekend was a high, visiting our daughter and her partner in London. We met them for lunch at Tate Modern, went on to see the Matisse Cut Outs exhibition, 

then walked along the Thames, over Tower Bridge and around the Tower of London to see the ceramic poppies spilling out of the building and around the moat to commemorate those who lost their lives in World War 1.

Rather than returning to Oxford as we would normally do after a day out in London, we had booked into a B and B near Katie and Ed's flat which meant we could enjoy an evening meal out together at Mosaica, part of a converted chocolate factory in the middle of an industrial estate, followed by a glass or two of wine back at their place before going back to our overnight accommodation, a short walk away.

After a leisurely breakfast on Sunday morning, all four of us took the bus up to Alexandra Palace (or Ally Pally as it is affectionately known!) 

to browse the farmers market, walk around the People's Palace and enjoy the expansive views over London, before going back to their flat for lunch then on to Paddington and home on the train.

The high turned into a low when we read about the death of Tess, one of our meso blogger friends.  Another reality check...

The big garden makeover started on Monday morning, with contractors coming in to do the heavy work; taking up the remaining old paving slabs, digging out the base for the new paved area; filling it up with hardcore and a layer of sand then setting out the new paving.  Most of the time we kept out of the way, working upstairs and letting them get on with it - just popping down when called if there was a decision to be made, or something to sort out.

Progress was looking good when I left on Thursday for a work-related trip to Guernsey, but there was bad news on my arrival home on Friday.  We had ordered and paid for railway sleepers a couple of weeks ago.  These are going to be used to make raised beds around the paved area. When the contractors went to collect them on Friday, only 10 out of the 15 sleepers we had paid for were available. The rest had been sold on to someone else!  Can you believe that? I was spitting feathers, especially when we were told that they had no more in stock and didn't know when the next delivery would arrive.  AWBS -  you have been named and shamed.  This is not the way to conduct business or win customers. 

Without all the sleepers, we can't finish the raised beds, do the planting, finish the job and clean up the house (everything comes in and out through the house, so it gets mucky even with the greatest of care...) We went to AWBS yesterday morning to ask what they were going to do to sort out the mess they had got us into.  The chap in charge on Saturday said he couldn't help, but he would ask the manager to contact us on Monday.  I spent yesterday afternoon looking for a new supplier.  We shall see what happens next week.

These circumstances would be annoying at the best of times, but with a trip away planned later in September and the likelihood that Steve will be having treatment or one sort or another not so long after that, we can't let the job drag on. Once life is dominated by hospital appointments, everything else is likely to go on hold.  We simply don't have the time to waste. SO frustrating... 

However, it wasn't all bad news this weekend.  If you are a regular reader of the blog, you will know that from time to time I submit a photo to the Guardian Weekend Magazine in response to the weekly theme.  If I'm lucky, its published in the paper or online. The grand total of my selected images was 11 up until yesterday morning, when number 12 appeared in the magazine, taking pride of place in the final "Your Pictures" feature. That put a smile on our faces - and a good note on which to finish the series.

Other highs included a meet up with old friends at on Friday night, and receiving a copy of the 1X yearbook Mono, which includes one of my images - a great honour.  

Missing the launch of a friend's book on Wednesday was frustrating.  However, an artwork project we have been working on with a mutual friend has turned out to be a success.  Discovering we had left the freezer door slightly ajar and everything had melted was a bit of a downer earlier in the week, but its re-stocked now, so all's well that ends well.  

Setting aside the loss of yet another brave meso warrior, on balance, I think the highs and progress made over the last 10 days more than make up for the lows and the frustrations in this period.  That's got to be worth celebrating. 

Today has been another high, but more about that - and some pictures - later in the week.  

Hospital appointments have been coming through thick and fast.  Steve had his scan last Friday.  I have a spinal nerve block injection next Friday.  Two appointments have come through in early October for Steve to see the Clinical Trials Team and the consultant oncologist, then we have flu jabs in mid-October and a follow-up appointment with a consultant for me in December to see if the spinal nerve block helps relieve my back pain.  For people who don't plan ahead very far, the diary is looking remarkably busy...

VanSel1 Cycle 2 Day 15: Better out than in....

After a weekend of feeling vulnerable with frequent visits to the loo, Steve still felt rather agitated when we went to hospital this morning for his regular weekly check up.  Within a few minutes of sitting down on the ward, he stood up again and headed quickly for the bathroom.

Hearing him cough loudly, I followed him in and found him head over the loo, retching.  Then he was SPECTACULARLY sick - all over the wc, the floor, his shoes and new trousers.  

It's at times like that you really appreciate a nurse who doesn't flap, comes to the rescue with tissues and wet wipes, reassures you and tells you not to worry, and then gets on and deals with the mess efficiently.  

As the saying goes, it's better out than in.  And in Steve's case, that was true.  He felt much better by the time he was cleaned up and had got back to the bed bay, albeit rather weak and empty.

Although not scheduled, the nurse thought it prudent to get him checked over by the doctor before he took his morning dose of drugs.  So bloods and ECG done, we chatted with Doctor Nick about what had just happened and how Steve had been feeling over the last week.

It was reassuring to know that Steve's chest sounded no different, in spite of the cough continuing on and off.  All his symptoms - diarrhoea, fatigue, vomiting, mouth sores and skin disorders are known side effects of the trial drugs and are considered to be indicative of Level 1 toxicity (I dread to think what Levels 2 or 3 are like....)  

However, the doctor acknowledge that while such side effects are not considered to be serious in medical terms, when they continue for a sustained period it can be very draining and feel like the patient's quality of life has been compromised. He stressed that Steve can leave the drug trial at any time if it all gets too much.  The choice is entirely his.  

We had already talked about this.  All other things being equal, Steve intends to continue taking the trial drugs until the end of cycle 2.  By then we will know from the scan whether they are having a beneficial effect on the mesothelioma. 

If the cancer has shrunk, is stable or if any growth is small and has not spread into new areas, Steve will take this into account before making a decision about whether or not to continue.  Obviously, if the meso has grown significantly or to spread to new areas, then he will stop at once; we will take stock and explore whether there are other options.

So...two more weeks to see assess the manageability of the side effects of the trial drugs and then it will be decision time.  

Steve is taking a nap as I write.  Here's hoping that he feels better when he wakes up and that he manages to keep some food inside him in the coming weeks to give him a bit more energy.  

Reading Amanda and Ray's blog, made me start yearning for a long riverside walk ending up at a pub!  Tess has been making the most of her week off chemo, meeting with family and friends and enjoying Mother's Day.  As usual, Mavis is busy raising awareness and plugging the Saatchi Bill.  Perhaps this is the best way to deal with "scanxiety"?  Lou in Australia has been given the all clear to fly to the States for the ADAO 10th Annual Conference in Washington - great news, and very exciting! 

Last but not least, here is a special hug for Grace and her boys who said their final farewells to bravo meso warrior, husband, father and friend Ian on Friday xx

a birthday, a blip and another bereavement....

First of all, thank you for Steve's birthday cards, messages and good wishes.  It was a low key day, with phone calls from our children, a special evening meal and a nice bottle of vintage fizz at home providing some highlights.  We'll have a proper celebration when Steve is feeling a bit better.  

The antibiotic tablets and cream seem to be making a small difference to Steve's skin on his face, neck and chest. Although it's still a long way off "normal" at the moment, there does seem to be a slight improvement day on day. However, still not enough at the moment to feel comfortable about going out in public unless he has to, like today - hospital day.  

We were all geared up for another 12 hours in the clinical trials unit - newspapers to read, a couple of films to watch on the laptop, a cushion to support my lower back (visitors chairs not good in this respect, especially if you spend the best part of twelve hours or so sitting in them!). 

Steve's bloods were taken for testing, along with blood pressure - still high, but not as high as last week - plus ECG, which measures the electrical activity of the heart over a period of time.  Steve had three measurements taken at five minute intervals.  We thought nothing more about it at the time, just waited for Dr Nick to arrive to give Steve a physical examination.

We know that some patients treated with vandetanib alone have experienced changes in the electrical activity of the heart, usually without experiencing any symptoms.  As a result, patients on the VanSel drug trial have frequent ECG assessments to ensure that any changes are managed by the doctor and do not become serious, as they can be linked to a condition called Torsade de Pointes, which can be life threatening. 

Each heartbeat is mapped by the ECG machine as five distinct electrical waves called P, Q, R, S and T.  The part of the pattern from Q to T represents the electrical activity of the heart's lower chambers, or ventricles.  When the QT interval is abnormally long, it means the heart cells in the ventricles are taking longer to recharge after each heart beat.  This can upset the careful timing of the heartbeat and may trigger an abnormally fast or irregular heart rhythm which can result in dizziness, light headedness, chest discomfort and shortness of breath or fainting.  

We were told this morning that Steve's "normal" QT measurement is longer than average and has been getting a little bit longer at every ECG.  Today, it measured 182.  The drug trial protocol is that a patient's QT interval should not go above 180 for their safety and to avoid the sort of things described above happening.  

As a result of his prolonged "QT" interval, Steve will stop taking the trial drugs for a week in the hope that his heart's rhythm will return to normal. However, he can continue to take the antibiotics which show signs of helping his skin improve.  Although the rest of his blood tests were OK, they think he would benefit from some extra magnesium. Amongst other things, magnesium plays a role in the transport of potassium ions across cell membranes, a process which is important to normal heart rhythm - so that should help his heart beats return to (what for Steve) is normal.  

Reading what I have just written sounds a bit scary. However, Dr Nick pointed out that in the drug trial everyone in the same cohort gets the same dose, regardless of their height, weight, metabolism etc.  There is bound to be some variation in how people react as the dose is not tailor made for each individual. Hence the regular and frequent monitoring to ensure that everyone stays safe.

With no trial drugs to take for a whole week, we are off the hook in terms of the strict mealtimes (and Steve's fasting) regime, we've grown accustomed to over the last four weeks. It will be strange!

I will now have to cross off the hospital dates on the calendar - everything will be shunted back at least a week.  We'll see how the next seven days go and take it from there....

We came home to more sad news that another meso warrior died today. It's less than two weeks since Ian, Grace and one of their sons, met up with fellow meso warrior Mavis and Ray for coffee in Kent.  Ian's sudden deterioration has come as a shock to all.  

Our hearts go out to his lovely wife Grace, their sons - the youngest of whom is only 11 years old - and Ian's family and friends  xxx

That was a week, that was

It has been one of those weeks we will remember for all the wrong reasons.

Last Monday, we went to hospital thinking that Steve would undergo tests to see if he is eligible for the VanSel drug trial. But because of the problems of arranging a scan appointment at short notice, most of the tests have been pushed back a week or so.  As a result, we are still in limbo - not knowing whether or not he will be able to take part in the study.

On Tuesday, I headed off to Guernsey for one of my occasional work-related visits, only to find on arrival that my mobile was misbehaving and I was unable to send texts or make outgoing calls, just receive incoming.  Not a complete disaster, but annoying because it made communication that much more difficult.  But at least the hotel had wifi, so I was able to catch up on news via e-mails and Facebook at the end of each working day.

Thursday morning, I woke up to the news that one of our cyber friends and fellow meso warrior Jan had died after a long battle with cancer.  It was not unexpected, but still heartbreaking.

Friday in Guernsey dawned wet with low cloud, which did not lift as the day went on.  The fog closed in and the 4 pm flight back to the UK was delayed, then cancelled.  Rebooked on the 6pm flight which was delayed for a couple of hours, then cancelled.  

By that time, there was no availability on the early morning flight the following day, so I was rebooked on the Saturday afternoon flight back to Southampton. 

Saturday brought news that Steve's mum had been taken into hospital in Bristol and was undergoing tests to find out the source of the problem.  That was still up in the air by the time my afternoon flight was due to take off.  But the plane was still on the ground.  It had developed technical faults which they were unable to fix, so we had to wait until early evening for a replacement plane to come across the Channel, landing in Southampton around 7.40 pm.

Earlier that day, a short but very vicious storm had brought down trees in the south of England, blocking railway lines and roads.  Trains from Southampton Airport Parkway station were replaced by busses and I found myself on the road to Basingstoke where we were dropped off at the station and left to fend for ourselves.  No direct trains to Oxford from there. Trains to Reading to make a connection were cancelled or severely delayed. 

I began to doubt whether I would get home that night. However, meso warrior Mavis kept me company chatting on Facebook until my knight in shining armour - i.e. Steve in the car - came to the rescue.  After a long detour to avoid fallen trees, we eventually arrived home at 11.30 pm last night. 

Today, we learned that Steve's mum is still in hospital but has had a good night.  We expect her to be discharged back to her care home when the consultant returns on Monday.

We have also been told details of the celebration of fellow meso warrior Jan's life.  However, it's the same day that Steve is due to start the VanSel trial (if he is accepted) so I doubt we will be able to attend.

That was quite a week, that was, for one reason or another - and I am happy to say goodbye to it and move on....Let's hope more positive things will happen next week and we are both able to re-charge the depleted body batteries and recover from the coughs that have crept up on us over the last 5-6 days. 

One last thing.  Sadly, the merry band of meso bloggers is shrinking.  I hope more people will come forward and share their experiences.  Jan found that writing about her cancer was a release for her and helped her deal with her disease.  I feel the same way as a carer.  It might help you too, if you are in the same position.  Think about it....

Jan's (last) Journey

When Steve was first diagnosed with mesothelioma, we scoured the internet looking for information, advice, support...in fact anything that might help us.  One of the websites we discovered was Jan Egerton's blog, Mesothelioma - Jan's Journey. We have been following Jan's journey ever since. 

Jan was diagnosed in 2004, age 44 years, although she had symptoms of the disease going back the the late 1990s.  Her response to the diagnosis was to fight back.  

And what a brave fight she has put up over the years, in spite of prolonged pain and many frustrations.  Major surgery to remove tumours and clear the chest wall of pleural thickening; pleurodesis; radiotherapy; chemotherapy; cryo-abalation in the States; more chemotherapy; another operation to remove the left lung lining, diaphragm and heart sac and replace with synthetic lining; more cryo-abalation; more radiotherapy, followed by yet more chemotherapy and the fitting of a permanent drain to deal with a build up of fluid in her stomach (ascites).  Her last act of defiance was another blast of radiotherapy mid-January.  If anyone deserves the title "Meso Warrior" it has to be Jan!

Sadly, Jan lost her last battle on Wednesday 23 January. However, she leaves behind a legacy of words in the form of her blog (which should be required reading for any nurses or doctors treating people with mesothelioma); the articles she has written for various mesothelioma websites and two fiction books (proceeds from the sale of which are donated to the Mick Knighton Mesothelioma Research Fund).  Find out more by clicking here . 

Jan inspired, helped and supported others in her position and their carers, and did much to raise awareness and fight for improvements in patient care, all the while she was fighting her own war on mesothelioma.  She will be sorely missed by the mesothelioma community.  Our thoughts are with her husband Gary and their family and friends.

We never met Jan face-to-face, although we talked often on Facebook and  exchanged e-mails.  We had hoped to meet up in person at the Mesothelioma Patient and Carers day in 2012, but that coincided with the start of Steve's second chemotherapy regime and we had to cancel.  Sadly, we can't even come to celebrate your life in February, as that will coincide with the start of Steve's third treatment regime, assuming he is accepted on to the VanSel1 drug trial. However, we will be with you there in spirit and we send our love to all those celebrating your memory.  

I'm so pleased we met in the virtual world.  Thank you for your support and inspiration, Jan   x

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

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

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

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

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

Steve and Gail Cook flying high

Steve and Gail on the slopes

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

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

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

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

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

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

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

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

Cheers, mate