Moving the goal posts....

It's been one of those weeks when someone keeps moving the goalposts.  As a result, it feels like we have been going one step forward and two steps back ....

...Much time and energy was spent getting the garden ready for the last big push on the makeover project: rescuing plants from the border which will disappear in the new layout; re-cycling and free-cycling things we no longer need, including lifting old, very heavy paving slabs and giving them away to others who can make use of them; ordering the railway sleepers for the new raised beds; putting in the last of the fence panels to screen the new shed and storage area...only to find out on Saturday evening that the planned start yesterday was postponed for a week, as the contractor's current project has overrun....

...We had made travel and accommodation arrangements for a trip to Heidelberg, cutting short our planned stay to accommodate Steve's next hospital appointment on 29 September, only to get a letter yesterday saying that the appointment had been put back a week, so we could have stayed longer after all....

Today, we have been at hospital again, this time for me to attend the specialist spine clinic to find out more about treatment options for a back problem.  There is only one "cure" option - surgery, either one major operation or a number of smaller ones over time.  However, although not a cure, steroid injections into the spine can bring pain relief for some people, so that seems like a good place to start...

....The way things are going, it looks increasingly like Steve and I might both be having steroid treatment at the same time. That could be interesting....

Hey ho!  We'll cross that bridge, if and when we come to it.  

The way the goal posts keep moving, there could be more changes of plan on the horizon.  Steve's scan appointment came today, but we still don't have a date for his appointment with the consultant oncologist.  

In the meantime, we'll just go with the flow and make the most of this week.  Once the contractors start on the garden next week, we're be in for a period of early mornings, noise, dirt and disturbance as everything has to come in (and go out) through the house.....Ah, the joys of living in an Edwardian terrace!

Last but not least, Happy Birthday Meso Warrior Mavis!  And many happy returns with love from us xx

Flying in a holding pattern

About this time last year, Steve's meso started growing again after being knocked back by the standard treatment of pemetrexed/carboplatin over the winter of 2012/13.  

The meso carried on growing, albeit slowly, through the VanSel early phase drug trial that Steve took part in between February and April this year.  So it came as no surprise yesterday to find out at Steve's assessment that there has been disease progression.  However, seeing the X-ray from January displayed next to yesterday's X-ray was a reality check; a noticeable increase in pleural thickening and tumour growth at the base of his right lung, wiping out any faint flicker of hope that there might have been a delayed response to the trial drugs.

Although there is another clinical trial currently recruiting in Oxford, it's a dose escalation study and has only recently started, so the clinical trials team know it will be some time before they reach an effective dose.  Dr Ioannis advised that he didn't think it worth putting Steve into this trial so early in the dose escalation as he probably wouldn't benefit.  

However, we understand that there are other things in the pipeline which are possibilities.  To see whether Steve might be eligible, he had bloods taken for testing: C&G, CF7 and BF7 (if we have read the doctor's hand-writing correctly). Does any one know what these tests are for?  I've googled but found nothing - at least nothing relating to blood tests....

There are also options to re-challenge with pemetrexed / carboplatin, which produced a good response last time around, and to explore clinical trials which are recruiting elsewhere.  We told him about the MK-3475 trial that fellow meso warrior Mavis is on at the Royal Marsden, and how promising her scan results were.  He is happy to refer, if Steve wants to see what's on offer at other hospitals.

The doctor has asked for another scan to be arranged in the next couple of weeks to compare the results with the scan taken towards the end of the VanSel drug trial, in early April. This will give an indication of the speed of disease progression, which may help decide the best option to go forward.  

The scan will also show whether the lump on his chest is meso-related or not.  The doctor thinks not, based on the X-ray.  However, the more detailed scan will clarify this. Whatever it is, thankfully it's causing no pain.  In fact, Steve is still feeling good and leading a "normal" life to all intents and purposes - walking, lifting, carrying with no significant problems.

If disease progression is speeding up, Steve may wish to start treatment with pemetrexed and carboplatin sooner rather than later.  If the meso is still relatively slow-growing, Steve may wish to hold off treatment until after Christmas, or whenever a promising trial is open for him.  

We have another appointment with the clinical trials unit in late September.  Steve will also be given an appointment with the consultant oncologist Dr T, to discuss all the options when the scan results are known.  That way he remains on the clinical trials waiting list, but can also have more of the standard chemo if that's considered to be the way forward. 

So....sometime in the next 4-6 weeks, we will have a better idea of the best course of action.  In the meantime, it feels like we are flying in a holding pattern until cleared to land on one treatment option runway or another.  

Whatever happens, we will make the most of the next few weeks! Arrangements are already in place for family gatherings in London and Bristol.  Flights and accommodation are booked for a get-together with our photographer friends in Heidelberg.  The last big push on the garden makeover starts next week, with a contractor doing the really hard work....We can just sit back, watch, and enjoy choosing the plants ready to plant out when it's all finished in a few weeks time!  

With Oxford Open Doors, London Open House, Oxford Thai Festival and St Giles Fair to look forward to in the next few weeks, some socialising and a work-related trip to Guernsey (as well as a scan and more hospital appointments) September looks like it will be another busy month with little time to get too stressed about what happens next. That's the theory anyway...

A Meso Warriors meet up

One of the wonderful things about the mesothelioma groups on Facebook is that they are global.  We find ourselves talking to people from all over the world, sometimes without realising it - the common bond of a mesothelioma diagnosis binds us together, those who have the disease and those who care for them.  

Not so very long ago I had a message from meso warrior Lou in Australia about another warrior, Nancy, who lives in the States but was due to visit the UK this summer.  She asked whether we would like to meet up during Nancy's visit. Naturally, we said yes!

And it happened this week...Nancy and her husband Andrew were staying not too far from where we live in Oxford and had booked theatre tickets for a production in one of the University Colleges. We invited them for afternoon tea on the roof terrace dining room of the Ashmolean Museum.

We have never met before and only exchanged a few messages on Facebook prior to Friday, but we greeted each other like old friends knowing how much we had in common!  

Over tea, a glass of fizz, sandwiches, scones and cakes we compared notes, shared experiences and learnt more about each other's lives - finding our we had more in common than we first realised... 

Mesothelioma had brought us together and, not surprisingly, the conversation kept coming back round to it in various ways.  But that wasn't the only subject of conversation in those few hours spent together, which flew by.  

Before long it was time to say our goodbyes - I know we will keep in touch, as we have done with others who have come into our lives as a result of this disease.  

Thank you Lou for the introduction via Australia!  Thank you Nancy and Andrew for a very enjoyable few hours in your good company!  We wish you well for the rest of your trip, and will be thinking of you on your meso journey.

The rest of last week seems to have galloped by: progressing the garden makeover project by a few more baby steps; a brief meet up with our friend Chris in Oxford for a seminar; preparation for my next work-related trip to Guernsey in a couple of weeks time; photographing public art in Bicester as a commission; making plans for a visit to London at the end of the month...

...but the reality is that Monday's hospital appointment is looming large.  In just over 24 hours time, we will find out how Steve's meso is doing; whether or not the small lump on his chest and his occasional loss of appetite are cancer-related; whether there are any clinical trials recruiting locally that he might be a suitable candidate for...or whether we need to look further afield, following in the footsteps of Mavis and head off to the Royal Marsden....or perhaps we will just enjoy the next three months without chemo, drug trials or any other therapy, re-charging the battery ready for the next battle....

Moving forward, a surprise and some very good news!

It's been another busy week in which we have moved forward on a number of fronts....

...On the home front, the new garden shed has been assembled, moved into place, anchored, made weathertight and kitted out with shelves and boxes and is now providing a home for the garden stuff that's been stored under a tarpaulin since the old shed came down in the spring.  

The new paving has been chosen, ordered and paid for, ready to be laid by the contractor at the end of the month, together with the railway sleepers that will form the new raised beds. A decision has been made on the replacement deck boards, so we can now calculate quantities and place an order.  

Still things to do, but the garden makeover is moving forward on schedule.

...On the family front, we visited Steve's mum in Bristol on Saturday afternoon and our nephew Nick, partner Kate and their daughter Esme on Sunday morning (where we were given some lovely pictures drawn by Esme!)

By Sunday afternoon, the car was loaded up and we were on the road from Bristol to London, helping our son take some heavy, bulky items to his new flat share. Then back on the road to Oxford, under the huge super moon on Sunday evening.  A round trip of about 300 miles over the course of two days, but worth it to spend some time with the family!  

....On the health front, Steve has felt good and has been relatively active recently, because of everything that's been happening.  By this time next week, we will have a clearer idea of what's going on inside, and find out whether there are any clinical trials recruiting locally which might be suitable for him.  Following an assessment a fortnight ago, I now have an appointment to see a spinal specialist at the end of the month to find out more about treatment options.  

Regular readers of the blog may have picked up that the dragonfly has become a symbol for many in the meso community on Facebook.  Imagine my surprise and delight when one arrived in the post in the form of a dragonfly brooch from a "mystery" sender.  

But I've guessed...Thank you Jan, such a lovely thought!

As everyone in the mesothelioma community knows, there are many heartbreaking stories out there on a daily basis. We feel for our friends going through treatment, like Lou in Australia; those awaiting treatment like Amanda's Ray; those like Tess, who have decided not to have any more treatment, at least for the time being; those facing the end of life, and those who have to stand by and watch their loved ones decline, feeling helpless...When bad news happens daily, good news is a great boost to all of us....

And, oh boy, there is some good news to share and celebrate! Fellow meso blogger Mavis, who was diagnosed around the same time as Steve, has been taking part in a Phase 1 clinical trial of a new immunotherapy drug MK3475 at the Royal Marsden Hospital.  Yesterday she found out the results of the first scan taken since starting the trial: shrinkage on all tumours!  The meso community on Facebook is buzzing with delight and relief....could this be is the silver bullet that will stop mesothelioma in its tracks?  Far too early to jump to those sort of conclusions, but it does look very promising!

Here is a link to Merk's page listing a range of trials involving MK3475 Pembrolizumab worldwide, in case you want to follow it up.  I believe this is the one that Mavis is taking part in Study of Pembrolizumab (MK-3475 in participants with advanced solid tumours (MK-3475-028/KEYNOTE-28) NB It is only open to patients whose tumours have NOT responded to current therapy.

Sadly for Steve, people with a clinical history of autoimmune disease, such as arthritis, are excluded from the trial so taking this immunotherapy drug is not an option for him, unless it's designated as a Promising Innovative Medicine (PIM) under the Early Access to Medicines Scheme.  Let's hope so.

Post Provence

It feels like our feet have barely touched the ground since we returned from France. 

Less than 12 hours after returning home, a huge box of components for the new garden store was delivered. Within 24 hours, fence panels to screen the shed from the rest of the garden had arrived.  As both were on a 2 week delivery schedule, these had not been expected until the following Monday at the earliest.  We had to scurry around making enough space to store them outside, contact John (the friend who is helping us with the garden makeover) to arrange to build the shed base, and pick up ballast and cement to do the work.

On the plus side, this activity prompted us to organise the garden, fix and clean the garden chairs, tables and lanterns, and take greenery to the recycling centre. By the time daughter Katie and her partner Ed arrived for the weekend, we were able to sit outdoors and enjoy the glorious weather over a glass or two of wine as a pre-birthday celebration.

As Steve was not feeling great, we abandoned plans for a meal out and eat at home on Saturday evening.  By Sunday, he was feeling better again and we went out to a local viewpoint, Jarn Mound, to look down on the dreaming spires of Oxford (sadly obscured by trees and bracken on this occasion), 

have a walk around the wild garden designed by Arthur Evans (archaeologist, famous for work at Knossos, Crete) and venture a little way Mathew Arnold's field, the place said to have inspired the famous poem The Gypsy Scholar...before ending up at The Fishes pub for a picnic!  Lovely weekend :-) 

Monday was hospital day - me, not Steve this time - for a face to face assessment in the spinal unit, an explanation of the MRI scan results and a short discussion about treatment options.

For my birthday on Tuesday, we headed for the hills - the Lambourn Downs to be precise, where we climbed up to the white horse carved into the chalk and watched the paragliders take off over the Vale of the White Horse spread out beneath us.  

On to the ancient circle of standing stones at Avebury in Wiltshire for lunch, followed by a walk around the stone circle.  

Then home for birthday cake and fizz!

On Wednesday, we were hard at work in the garden with John, taking down a large shrub and extending the concrete base of the old shed to accommodate the larger new one. Thursday's task was to go through the boxes containing all the components for the new shed to check nothing missing and to stick labels on to make it easier to find the bits when we put it all together...Took a surprisingly long time.....

The weekend kicked off enjoying an evening out with our friends, Jonathan and Sally, a sort of joint post-birthday celebration for two of us!  Saturday was spent recovering.....Today, we are trying to catch up....

Over the last few weeks, we have been a little concerned about Steve's appetite.  He has had days when he has eaten little and has lost a bit of weight, judging from the loose fit of his trousers.  However, now that the high temperatures of the last few weeks have subsided, he seems to be back on track food-wise.  Maybe the loss of appetite was all related to the heat...and the weight loss due to the fact that we have been more active recently, walking a lot in France and working in the garden.  

However, there are a couple of other little niggles - occasional tenderness low down on the right side of his chest (the meso is in his right lung) and a small lump high up on the front of his chest, which he first noticed after lifting heavy bags of concrete.  Although tender at first, the lump doesn't hurt now but it still hasn't gone away.  Something to discuss with the medical team at Steve's next assessment on 18 August.  

In the meantime, we send our love to all the meso warriors going through treatment, waiting for scan results, starting clinical trials and fighting the disease in their own ways, and to those who have lost loved ones or are watching them slip away....

...and if you haven't read it already, please take a look at this article in the Independent on 1 August "Secret deal meant mesothelioma compensation scheme favoured insururers"   and consider signing this e-petition about research funding into asbestos-related diseases

Thank you x