Monday, 15 September 2014

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 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...

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