Tuesday 18 October 2011

Crystal ball gazing

Yesterday evening, we had an unexpected phone call from an old friend from our student days who shares our passion for photography, as we discovered when we met up with him and his wife last year when they visited Oxford.  

He had phoned to invite us to give a talk about architectural photography at his local camera club. When asked when this was likely to be, I was rather taken aback by the answer - June or July 2012.  I had to explain gently that even though Steve's condition was still stable at his assessment in September, we had no way of knowing how things would be in eight or nine months time. We simply can't make firm commitments that far ahead in the future, and we would hate to let them down if we couldn't make it because Steve's health had deteriorated.

The conversation made me think. Even though I have written many times in the blog that we plan our lives around Steve's three monthly hospital assessments, it seems that not everyone fully appreciates the reason why - which perhaps is not surprising, if you have no personal experience of this disease.  Although it has a very long latency period (20-40 years) mesothelioma is usually a very aggressive cancer. By the time symptoms of the disease are bad enough to see a doctor and a diagnosis confirmed, disease progression can be rapid. We try not to think about this, especially as Steve is asymptomatic at the moment. However, there are times when we have to face the demon.

This has been brought home to me recently with the rapid deterioration in the health of one of our meso warrior friends, Ronny.  In late July, Ronny was told by her oncologist that she was in a "dangerous phase", a euphemism for final stage, with just 4-8 months to live. Determined not to give up, she went to Germany in early August for treatment with Prof Vogl, then started chemo in mid-August. A fortnight ago, Ronny wrote in her blog that two months into her 4-8 months prognosis, she didn't feel any worse.  She hoped the goal posts might have changed a bit and that she may yet defy the odds. Then silence. Last Sunday we heard that she was feeling very poorly after the third cycle of chemo and was not eating. Yesterday, her daughter wrote that things have deteriorated and Ronny is now being looked after (very well) in the hospice.  Our thoughts are with Ronny and her family.

Only last week, I wrote about breaking the self-imposed rule about not making firm plans beyond Steve's next hospital assessment.  Ronny's experience is a timely reminder about why we have adopted this approach to life.  We have taken a calculated risk by making arrangements to do something special in 2012, a couple of months beyond Steve's next assessment in mid-December.  However, we are no more able to make a firm commitment to do something in June or July next year than we able to predict the future with any confidence by gazing into a crystal ball.

So - back into the here and now.  When you plan your life in blocks of three months, things tend to get crammed in to make the most of this relatively short space of time.  After a little lull in activity recently, we are about to enter another lively phase of life.  Don't worry if the blog goes quiet for a bit.  We are just busy having fun!  

Saturday 15 October 2011

Desperation; Pacification; Expectation; Acclamation; Realization

If you are of a certain age or happen to collect old shop signs, you may be familiar with the Fry's Five Boys chocolate bar advertisement from the 1960s.  If not, this is what I'm talking about:

Desperation; Pacification; Expectation; Acclamation; Realization

I've felt a little bit like the boy in the advert this week - going through a range of similar emotions, but not necessarily in the same order!

This time last week, we were expecting visitors......Time to catch up on housework, make home look welcoming and ensure there was enough clean bedding for our guests. Fortunately all was ready by the time they arrived (earlier than expected) after a day walking the Thames Path, so we didn't get to the desperation stage!  In fact, we enjoyed a lovely meal out on Saturday night with Di and Gwen, then walked it off on Sunday morning joining them for a few miles along the Thames towpath, before heading home.

However, I confess to feeling slightly desperate on and off throughout the week whilst trying to finalise arrangements for daughter Katie's move into a new flat in Manchester which is supposed to happen very soon. Many phone calls and e-mails later, I think we are nearly there, but it could still all go horribly wrong at the last minute.......

We spent Thursday afternoon and evening in London at the AOP (Association of Photographers) Open Awards 2011 exhibition.  The intention had been to visit some of the other work on show in the Brick Lane area as part of PhotoMonth, the East London Photography Festival, before going on to the AOP launch party.  However, the first "exhibition" turned out to be a few photos tucked away in the basement of a cafe bar next to the toilets, and the second venue - a pub - didn't appear to have any photography on show.  Tired of wandering round, we headed for the old Spitalfields Market, found somewhere good to eat and were pacified with a couple of happy hour Mojitos while we waited for our food.  

I didn't have any great expectations of winning one of the judge's or people's choice awards which were announced at the AOP Open later that evening, but I was very pleased that one of my images was amongst the 66 photos selected for the exhibition out of over 1500 submitted by both professional and amateur photographers from all over the world.  

Steve's good news on the photography came yesterday. He has been shortlisted in the Art 4 Wards project to provide artwork for one of our local hospitals, the Nuffield Orthopaedic Centre.  The Trust wants to buy four of his prints to cheer up patients and staff.  So acclamation for Steve!  And one member of staff may be interested in buying my submission, so I am pacified.....

All week, my expectations have been mounting as I anticipated reaching the magic number of 1000 images posted on Fotoblur - an international online photographic community which I joined in August 2009, not long after Steve was first diagnosed with mesothelioma. A daily dose of Fotoblur was one of the things that helped me keep going back then - a sort of creative lifeline which I clung to while Steve was going through chemo, something positive to occupy my mind while he was napping in the day and having early nights to manage the side effects of the treatment.  

I reached the magic number yesterday and posted the 1000th image with a thank you note to Lance Ramoth (Fotoblur's founder) and the members of the community who have provided support, encouragement and inspiration over the last two years. The response has been overwhelming and very touching. Like the support from the Meso Warriors on Facebook, none of this would have been possible without the internet. So - acclamation for virtual friends and the world wide web!

On and off throughout the week, I have been checking on the progress of other Meso Warriors - Anita in Oz is recovering well from surgery; Mavis in Kent has just started her chemo and drug trial - so far so good; Ronny is still fighting hard; Jan is back from Greece, feeling positive and make plans for next year. I have added another blog under We are not alone - Amanda, whose partner was diagnosed with mesothelioma in October 2010 and is still here, still fighting, still enjoying life one year on.  I'm sure we all have times when we feel desperation, but we learn how to manage our expectations and realize the importance of making the most of life - a good advert for how to live with mesothelioma :-)


Wednesday 12 October 2011

breaking the (self-imposed) rules

If you have dipped into this blog before, you will probably be aware that since Steve was diagnosed with mesothelioma, our lives have been planned around his three-monthly hospital assessments.  We rarely make important commitments beyond the date of the next assessment when we know what's going on inside and whether or not we will be living with another course of chemotherapy, and all the hospital visits and side effects that entails.  

Taking a short term view is partly social - having made a commitment, we hate letting people down.  It's partly financial - a mesothelioma diagnosis makes getting insurance difficult (if not impossible) and usually very expensive; without insurance, hard earned money is lost if plans have to be cancelled for any reason.  It's also partly about managing expectations; it's very demoralizing to look forward to something very much, only to find that you can't make it because mesothelioma as reared its ugly head in one way or another.

It is therefore with some trepidation that we have just broken one of our self-imposed rules and made plans to do something special in 2012, a few months after Steve's next hospital assessment in mid-December.  However, we won't be letting down any friends if it all goes wrong on this occasion.  Having had problems with insurance in the past, we now know about another company which specializes in insuring people with pre-existing medical conditions, including cancer, thanks to a contact at the Mesothelioma Day event. All being well, Steve will be able to get insurance nearer the time, so there is a good chance that financial considerations won't be a big issue.  

How we will deal with managing expectations if things go wrong, I'm not sure.  However we are enjoying the anticipation of a special occasion in a few months time; unusually for us, Steve has made all the arrangements this time, a sign that he's feeling confident about the future. And wouldn't life be boring if we didn't take the odd calculated risk occasionally?  If we have to change our plans because of Steve's health, I imagine that missing out on what might have been would be the last thing on our minds - we would be focussed on fighting the mesothelioma and getting through whatever lies ahead. 

One of the things in the PETAL philosophy of living with mesothelioma (blog post 20 June 2009) is setting "Targets" and another thing is "Living your life". We may have broken a self-imposed rule but we have given ourselves another target to aim for and another life experience to enjoy.  I think that ticks the "Positive mental attitude" box too. We're doing well!

Friday 7 October 2011

looking forward to autumn

The Indian summer is most definitely over.  Time to look forward to the autumn.  It feels very much like starting a new term at school!

Last night, we celebrated the news that our daughter Katie has found a new flat in Manchester.  We'll be up there again in a few weeks time to help her move in.  

Oxford Photographic Society's 2011 exhibition opened on Sunday in the Town Hall Gallery, so we must find time to visit and have a good look. Please drop in if you are in the area between now and the end of October.  If you have read the blog for 20 September, you will recognise my image!

We are looking forward to visitors this weekend.  Di and Gwen are walking the Thames Path long distance footpath and will be reaching Oxford soon, giving us the opportunity to provide B & B for the intrepid walkers and catch up on news.  

We are fortunate to have other good things to look forward to in October and November, but you'll have to come back to find out what they are.  In the meantime, we are thinking of our meso warrior friends who are not so fortunate, in particular the family and friends of Mick in Australia and Becky in the USA who both died recently; Anita in Australia who is recovering from surgery; Ronny who is fighting hard to beat a 4-8 month prognosis and Mavis who will shortly be back on chemo and taking part in a new Phase 3 drug trial NGR-hTNF.  

NGR-hTNF acts by selectively targets the blood supply to the tumour.  It showed great promise in the Phase 2 stage, where patients who received the drug on a weekly (rather than 3 weekly) basis stayed free of disease progression for more than 9 months, compared to a median duration of 4.7 months overall.  I know from experience not to give too much weight to crude statistics when assessing an individual's response.  However, these stats look good. Nine months progression-free survival may not sound like very long if you are fit and healthy.  But believe me, you can cram an awful lot of life into that amount of time if you have an incurable disease.  May it work even better for those taking part in the Phase 3 trial. I have added a link about NGR-hTNF under clinical trials, top right.

Thursday 6 October 2011

a sad day for another Steve

We woke this morning to the sad news that Steve Jobs had lost his final battle with pancreatic cancer.  The man was an inspiration in more than just the obvious ways - Apple Macs and lots of wonderful things beginning with "i" .......  

Please take some time to watch this video of his speech to students at Stanford University USA in 2005, the year after he was diagnosed with cancer, in which he talks about 

  • joining the dots
  • love and loss
  • death
Watch, listen and be inspired.....

"Your time is limited, so don't waste it living someone else's life.  Don't be trapped by dogma - which is living with the results of other people's thinking.  Don't let the noise of others' opinions drown out your own inner voice.  And most important, have the courage to follow your heart and intuition.  They somehow know what you truly want to become.  Everything else is secondary"

Wednesday 5 October 2011

Mesothelioma Patient and Carers Day

This year's Mesothelioma Patient and Carers Day on 1 October was packed with useful information.  I imagine that there will be a report on the Mesothelioma UK website at some time, but here are the things that we found very helpful:

One of the problems with standard systemic chemotherapy is (a) that it works better for some than others and (b) it affects all fast growing cells in the body, hence the nasty side effects.  Jeremy Steele (Oncology Consultant St Barts) talked about targeted/individual treatment, which aims to switch off and maximize damage to cancer cells, whilst minimizing damage to healthy cells and boosting anti-cancer defences.  The key is to find the "switch" to trigger the suicide mechanism in cancer cells (apoptoisis, to use the medical term).

Work is progressing on gene therapy as a way to correct genetic abnormalities which cause cells to keep growing, such as the ADAMS trial at St Barts, Guys and Southampton. The SKOPOS trial in Cardiff combines chemotherapy with the TroVax vaccine which tricks the cancer cells into becoming more visible and therefore more vulnerable to attack by the body's own defences.  The Meso-2 trial of STA-9090 (ganetespib) works on the same principle, I believe.  I have added a new section on the right with links to these clinical trials, which will be updated as and when I hear about more. Please let me know if you are on a trial which isn't listed and send me a link!

Lastly, Jeremy Steele talked about the Biobank, based in Cambridge, which is a database of meso cancer biopsy samples for use in research into genetic mutations.  

Mary Hesdorffer talked about experience in the USA.  There is much helpful information on the Mesothelioma Applied Research Foundation website Curemeso (I have added a link under Find out more on the right).  It is a sad fact but true, that whilst the USA has a huge database of clinical trials throughout the world, the coverage for trials in the UK is patchy to say the least.  There isn't a single comprehensive source of who is doing what in this country.  Even Mesothelioma UK doesn't know about all the clinical trials going on here which relate specifically to this disease.  A yawning gap to be filled.  Is it surprising in these circumstances that mesothelioma patients and carers turn to social networking sites like Facebook to find out what's going on!  

Listening to Michael Lees talk about Asbestos in Schools is both a pleasure (such knowledge) and a pain (the time bomb awaiting our children, teachers and support staff exposed to asbestos in educational establishments is seriously scary).   There is a link to the website on the right.  Visit this site if you have children, partners or friends who have spent time in system-built schools from the 50s, 60s, 70s, or older buildings refurbished during that time when asbestos was used extensively for insulation, fire-proofing, lagging, floor and ceiling tiles and such like.

Helen Clayson's session on understanding pain was an eye opener.  The first step should be a proper assessment of the pain (type, severity, cause) followed by selection of the appropriate medication based on the individual's needs. Patients need to be given both information about and instructions on how to use the medication, including managing side effects.  I would have though this was standard practice, but it appears not (gulp!)  Regular reviews are needed to see if its working, adjusting and refining the approach to pain management as necessary and prompt referral to a specialist if things go wrong.  All sorts of pain relief were touched on, depending on the type, source and severity of the pain, including morphine; cordotomy (killing the nerve which carries the pain if the body does not respond to other things); the use of local anesthetic patches; anti-inflammatory drugs such as ibruprofen and radiotherapy in some cases.

Liz Darlison drew our attention to a useful booklet about managing breathlessness, a joint production by MacMillan and Cancerbackup, which includes a CD Relax and Breathe, while Julie Robinson persuaded most of us to stop feeling self-conscious and join in the chair-based exercises in the Move it or loose it session! Tony Whitson gave a helpful update on Benefits and Hayley Richardson talked about the British Lung Foundation's Action Mesothelioma campaign, designed to raise awareness in the DIY community of the risks of disturbing asbestos.  Link added under Raising Awareness.

One of the highlights of the day for us was a talk by Peter Szlosarek, another Barts oncology consultant, on the subject of clinical trials in the UK for people with mesothelioma.  
This talk put more flesh on the bones of the ADAMS trial, mentioned earlier in the day by Jeremy Steele.  If you want to find out more about taking part in this trial e-mail Peter at adam@qmcr.qmul.ac.uk  He aslo gave a useful jargon buster to help understanding typical trial types:

  • drugs ending in "mabs" involve anti-bodies
  • drugs ending in "nibs" starve the tumour of blood
  • drugs ending in "mus" are blockers or one sort or another
  • vaccines usually involve anti-bodies or dendritic cells
  • the ADAMs trial drug is based on enzymes
The day finished with a session by Natalie Doyle about keeping up your spirits and a wonderful quote "being happy doesn't mean that everything is perfect.  It means you have looked beyond the imperfections."  I'll drink to that!

I've left the two most important people to last: the patients. Debbie Brewer who inspires us all and Suzanne Philbin-Jeng, who plucked up the courage to talk about peritoneal mesothelioma - even more rare than pleural mesothelioma. You are both brilliant examples to us all!  Thank you.

Sunday 2 October 2011

Indian summer

What do you do to make the most of an Indian summer in the UK?

Answer 1: Go to somewhere better known for its rain and enjoy the views under a blue sky and bright sunshine....

....so that's what we did last weekend - spending some time with our daughter Katie in Manchester, and taking the opportunity to show her around Salford Quays as well as exploring the "Northern Quarter" an area which is new to us.

We also managed to fit in a visit to Charlecote Park on the way home where we enjoyed one of the best displays of pumpkins we could remember seeing and treated ourselves to some heritage tomatoes to have with our evening meal (ugly to look at, but great flavour!)

Answer 2: Go on safari....

Or at least that's what it felt like we were doing as we spent a day at the Cotswold Wildlife Park, admiring the white rhino, zebra, lions, giraffes, red pandas, flamingoes, penguins and a host of other animals.

One of the highlights for us was a stroll through "Madagascar" where the lemurs roam freely, meandering close to visitors without fear....(that's Steve in the background!)

Answer 3:
Escape the heat by spending the day in an air-conditioned room with good company....and that's what we did yesterday, at the Mesothelioma Patient and Carers Day event.  I'll write about what we learned in a separate blog, but I can say here how wonderful it was to see many of the Meso Warriors face-to-face as well as other people we recognised from last year's conference, still very much alive and kicking.  As before, there were heartbreaking moments as people talked about their experiences, but these were more than counter-balanced by uplifting stories, positive news and helpful advice. Thank you Mesothelioma UK for such a wonderful event!  

Here is Steve with Debbie (Brewer) and Mavis (Nye) two other bloggers whose names might be familiar to you!