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...

An anniversary, a publication, a visit and a close encounter with a "donut"

Three weeks since Steve finished the Vansel drug trial and the side effects continue to remind us what his body has been through.  He still hasn't needed to shave much - facial hair seems to have stopped growing.  It hasn't of course, but one shave now lasts several days.  

Another surprising development is that the hair on Steve's head has started to fall out - not in great clumps to make him look bald, but a smattering of hairs on the pillow after a night's sleep, or over his top at the end of the day.  

We're not sure whether that's because the drugs are still in his system and have yet to be broken down and flushed out completely, or because there is a delay in the body's response to the way the drugs block the signals which tell cells to grow and divide.  Or maybe it's something completely different....But it's worth mentioning when Steve returns for his post-trial check up the week after next.

Tiredness continues, but not enough to keep us housebound on our anniversary on 1 May.  We didn't get up before dawn to go to the May morning celebration celebrations, but we did get out for lunch at a wonderful community owned pub and restaurant called The Seven Stars on the green at Marsh Baldon.

From there is was only a short distance to Harcourt Arboretum, where we were greeted by the resident peacocks and swathes of bluebell woods in full bloom - magic!  

The half day out was about all Steve could manage, but at least we celebrated our anniversary doing something special. Strange to think that when the photos below were taken on our wedding day, in all likelihood, Steve had already inhaled the asbestos fibres which led to his mesothelioma diagnosis in 2009.  Recognise Steve under the long hair and beard?

The weekend brought good news - my picture of Steve standing in front of a London mural was published in Saturday's Guardian Weekend Magazine, one of the selections for the theme "Draw".

Later that day, we were joined by our son Jack visiting from Bristol and enjoyed catching up with his news and future plans over a walk to a riverside pub for a glass of wine, followed by a meal at home cooked by master chef Steve.

That's the anniversary, the publication and the visit in the title of today's blog.  So what's the close encounter with a "donut"?  

The donut is the Magnetic Resonance Imaging (MRI) scanner at the Nuffield Orthopaedic Centre.  For a change, it wasn't Steve getting a scan but me, in the hope that it will reveal why my lower back/pelvis has been giving me pain for several years which is now getting worse.  The radiologist said he could see some impingement on the sciatic nerve (the cause of the the pain) and took an extra scan as a result. We'll have to wait 7-10 days for the result.  

On the way out of Radiology, we caught sight of two of our artworks which we had given to the hospital on semi-permanent loan...had almost forgotten about them, but there they were, ready to cheer people up!  Steve's is the anemone and mine the sunflower (designed to be hung horizontal, rather than vertical...but what the hell?! )

After the scan as we discussed what had happened, it brought back horrible memories of Steve's chest X-ray in 2009.  We had thought it was routine, only to be referred right there and then to a consultant to discuss the results, rather than going home.  At least that didn't happen today....However, whatever the cause of the problem, I'm hoping it's not serious and that it's something that can be put right with minimal intervention. I've got a meso warrior to look after!

Getting back up to speed and the start of an action plan

After being stopped in our tracks for a short while following Thursday's news that Steve's meso is on the move again, we are slowly but surely getting ourselves back up to speed - helped on our way by all the messages of support and good wishes.  Thank you all so much!  It feels wonderful to have so many people there for us, helping us move forward.  I will try to reply to you all individually, but it will take a bit of time.

Now the raw edge of the news has dulled a bit, we have been thinking about where we go from here.  One decision has been made.  Steve definitely wants to do something, rather than sit back and wait for the meso to grow and spread before taking any action.  So Option 1 has been set aside.

There is scientific evidence that mesothelioma patients who experience a relapse after being treated with pemetrexed based drugs (like Steve) may benefit from being treated with same drugs again.  You can read a summary of this Italian study by clicking here.  Our meso friend Heather confirms that this was her husband Alan's experience too.  So a further regime involving pemetrexed (aka Alimta) looks like a good fall back option to have in the bag, if all else fails.

However, Steve is keen to try something new, so we are focussing our attention on drug trails which are currently recruiting.  We know from experience last time round on the Velcade trial, that people on drug trails are monitored very closely and given lots of attention, which is always reassuring.  

We also know that drug trials are essential to find a cure for mesothelioma, so by taking part in another one, Steve would be helping others in his position in the long term.  Who knows?  He might even find himself taking the drug that is more effective than the current gold standard....  

Of course, he might find himself taking a placebo in a Phase 2 trial.....But as long as that's combined with pemetrexed (and maybe a platinum-based drug) he would be no worse off than if he had another chemo regime like the last one.

Phase 1 trials are different - everyone gets the trial drug. It's very much a step into the unknown, but it might be a leap in the right direction.  

To make an informed decision, we need relevant, detailed information about the trials on offer; what they involve; how they work; the side effects of treatment; whether Steve would be a suitable candidate.  And we need to gather this in an organised way, so that we can have a productive discussion with the consultant on 9 January.  

This morning we talked about a multi-pronged approach to move forward:

• Contact the specialist lung nurses at our cancer centre to ensure that it's the consultant we see in January (rather than a registrar) and to let him know that we want to know more about the Oxford-based VanSel-1 Phase 1 trial which he is leading, as well as his professional opinion about other drug trials within travelling distance of Oxford
• Contact Barts Clinical Research Centre with a synopsis of Steve's meso history to seek their views on whether they would consider him a potential candidate for any of the trials that are currently recruiting, including the SKOPOS trial of Trovax alongside chemo (although Steve's history of arthritis would probably rule him out of this immunotherapy trial); MESO 2, which involves adding a biological therapy drug called Ganetespib to the standard chemo; COMMAND trial which involves taking either another biological therapy drug called Defactnib or a placebo (not so good if you get the placebo and the meso continues to grow); the ADAM trial - a phase 2 study to compare the results of a drug called ADI-PEG 20 with best supporting care (again, not so good if you don't receive the trial drug)
• Contact Andrew Lawson - a doctor and fellow meso patient, to find out more about his treatment which involved drug trials abroad and whether he has any advice about those currently on offer in the UK
• Talk informally to our friend and neighbour down the road, who also happens to be an oncologist (although he doesn't work locally) 

At the moment, from our point of view, the front runners in terms of drug trials appear to be MESO 2, where at least you get standard chemo if you are not picked randomly for the trial drug, and the Oxford-based VanSel 1 trial - a step into the unknown...but isn't life like that anyway?

But enough of this stream of consciousness stuff!  Back to reality now...

I have to get a copy of today's Guardian as one of my images is featured in the magazine for the second successive week; 

we have an engagement party to look forward to this evening; a Secret Santa present to wrap and post; cards to print, sign and post; presents to think about; other meso warriors' news to catch up on as well as lots of e-mails to reply to and plans to make for what promises to be a very busy time between now and D-Day on 9 January.  Oh yes....and Christmas/New Year in between!

Big hug to all the meso warriors, especially Jan whose scan results did not bring good news and who is now so breathless when climbing the stairs and walking any great distance that she is now investigating chair lift and wheelchair options. Good luck too to Amanda and Ray, who is almost at chemo cycle 4, with cycle 5 scheduled for New Year's Eve, and Mavis who gets her scan results next week 

xxx

negative to positive...for now, at least

What does it take to turn us from being a bit grumpy into feeling much happier?

• some sunshine and blue skies
• a photo featured in the Guardian Weekend Magazine

• a "Topping Out" ceremony for Osney Lock Hydro, a community-led and funded renewable energy scheme on the River Thames, close to home, which we have supported

• an evening get-together in Bristol with friends from my time at PINS, including drinks in the Old Fish Market, a good meal at Giuseppe's On The Steps, and an overnight stay sharing a city centre apartment with Baz and Lynne who were very good company

• seeing Steve's mum looking relaxed and happy

• having an enjoyable lunch with our son Jack before returning home to Oxford this evening

With help from family and friends, we have gone from feeling negative to positive in the space of a few days.  How we feel tomorrow will depend on the outcome of Steve's hospital appointment.

Assessment Day is nigh.....