Monday, 26 May 2014

feet on the ground...plans all up in the air

Although his skin is still sensitive to sunlight and strands of hair continue to fall out from time to time, Steve continues to recover from the side effects of the Vansel drug trial. His appetite is good, gut back to normal and energy levels improving, although still not quite up to pre-trial levels. However, the months of inactivity whilst on the trial have taken their toll on his creaky knees, so we must pace ourselves getting back up to speed.  

We took advantage of yesterday's good weather to walk along the Thames to one of our favourite pubs, The Trout at Wolvercote. 

The round trip from home via Port Meadow is about five and a half miles, so a good walk.  We managed just fine, with a lunch break in the middle and short stops to sit on a bench and admire the view on both legs of the journey to give Steve's knees a rest and allow me to stretch out my back. The good news is that he wasn't breathless at all, although he did feel tired by the time we got home.

Encouraged by this success, we have been thinking seriously about a short city break in northern Europe followed by a week away somewhere a bit warmer, just as soon as I have completed work commitments which have kept my feet on the ground for the last fortnight or so, and will continue to do so over the next 2-3 weeks. 

However, we can't make firm plans to get away even at this late stage as there are so many things are up in the air at the moment.....

.....Steve is back in the normal "cancer clinic" system, with a hospital appointment later this week when we will no doubt discuss the last drug trial and any other clinical trials on the horizon which might be suitable for him....

.....I am waiting for an appointment at the spinal clinic, after an MRI scan highlighted several problems with my lower back. I'm not sure what can be done, but at least I now know the reasons for the pain - not a malignant tumour, which had been worrying me....

.....Our garden project seems to have stalled; so far, one contractor has dropped out and another who has quoted can't start until the meantime, the fencing components are taking up most of the dining room and are now being used as an impromptu extra table (i.e. dumping ground) which is not a good sign!  

....Clearing out the contents of the rented garage which flooded back in January and February has also stalled, partly because there is nowhere to store the things we want to salvage until the shed is replaced as part of the garden renovation project, but mainly because we just can't get up any enthusiasm.  There are more exciting things to do with any spare time and energy.

Things will start moving forward again soon, I hope...Perhaps we should simply focus on how to celebrate 16 June - just three weeks away now - the date which will mark five whole years since Steve was diagnosed with mesothelioma. 

And he's still going strong...How lucky we are, when so many of our friends in the mesothelioma community have lost their battles with the disease in the meantime....

Big hug to all the meso warriors who are still in there fighting and supporting each other, especially those going through, or about to start, treatment.  No doubt, Steve will be will be rejoining your ranks again at some point, but in the meantime we are going to make the most of this treatment-fee period, even if there are lots of things up in the air at the moment... 

Monday, 19 May 2014

Good days, sunshine!

The week started with a trip to hospital for Steve's post-trial check up - a whole month since he stopped taking part in the Vansel early phase drug trial.  Bloods, blood pressure, temperature, pulse, ECG followed by a physical examination by Dr Ioannis and a chat through the remaining side effects of treatment.  

Although this drug trial didn't work for Steve, he is keen on taking part in future early phase drug trials, so may continue to see the clinical trials team at his future three monthly assessments, rather than be seen in the "normal" clinic.  The doctors will confer and let us know.  

Back at home that afternoon, and there was a small step forward on the garden renovation project - the new fence components have arrived and have now taken up residence in our back room, pending finding a contractor to do the job!  

By Thursday, I had finished preparation for my next work-related trip to Guernsey and we set off for a few days away, staying with our son in Bristol. That may not sound very adventurous to you, but it was a major step forward for us - the first time this year we have ventured outside Oxfordshire and stayed away overnight, due to the floods in January and February and the side effects of taking part in the drug trial from February onwards.

Lunch with Jack, then out Thursday afternoon to visit Steve's mum in her care home followed by an evening out at Eat Drink Bristol Fashion, enjoying wine and tapas in a tipi in Queens Square.  All good stuff!

Eat Drink Bristol Fashion a tipi
Our son lives in a flat development close to the M32 motorway.  Imagine our surprise in this very urban setting to see a deer standing in the communal garden at the centre of the block as we were getting ready to go out.  It stood there for quite a while, before eventually bounding behind the greenery and off out of sight, heading away from the motorway (thank goodness!) 

Urban deer
The sun shone brightly in a cloudless sky as we headed over the Second Second Crossing into Wales, for a day trip to Cardiff Bay.  We enjoyed photographing some fascinating buildings, including the Senedd which houses the Welsh Assembly, the Norwegian Church where Roald Dahl the author was christened, and the Wales Millennium Centre.  

Senedd, home of the Welsh National Assembly

The Norwegian Church

Millenium Centre

HMS Dragon was in the harbour, decked out with flags ready to open for visitors the following day.  

HMS Dragon
Lots of public art too, including the 70 ft tall water tower (made famous by the TV series Torchwood); 

the Merchant Seafarers War Memorial; 

Merchant Seafarers Memorial

the brick built beastie benches and the Captain Scott Memorial overlooking the spot where his expedition ship Terranova sailed from Cardiff in 1910.  

Scott Memorial
Lunch at the Lock Keepers cafe, a quick walk past the BBC Wales Studios, and on around the harbour side before treating ourselves to an ice cream to set us up for the journey back to Bristol.

BBC Wales Studios
Steve managed remarkably well, bearing in mind that he hasn't had much exercise in the last five months and his energy levels bottomed out during the drug trial.  However, although he remembered to put sunscreen on his face and neck and was wearing long sleeves and trousers, his unprotected hands and wrists were exposed to the sun and were quite red and puffy by the time he woke up the next morning.  Obviously, sensitivity to UV sunlight is a side effect of treatment that takes longer than a month to wear off...

Forewarned, Steve was well creamed up with Factor 50 sunscreen on Saturday, when we headed south into Somerset to visit Burnham-on-Sea - a traditional seaside town, with a great beach, the shortest pier in the UK and a quirky wooded light house, perched high up on nine stilt-like legs.  

Burnham lighthouse

We were hoping to find the wreck of the SS Normen, further along the beach but ran out of time and energy.  Next time!  

We were back in Oxford shortly before 6pm to meet up with another contractor who is interested in quoting for the garden renovation works.  I am beginning to wonder whether any one will actually undertake the job!

Saturday finished on a high, with another of my photographs published in the Guardian Weekend Magazine - that makes 10 so far! 

Today, we have been taking it easy - me enjoying the sunshine in the garden while reading the papers, Steve keeping cool inside watching the rugby union playoffs online.  Bristol won their match, so he is a happy bunny! 

Which seems like a good lead in to the song that inspired the title of today's post :  Good day, sunshine.....May there be many more days like the last few days over the coming year.

Saturday, 10 May 2014

Treading water

It feels a bit like we've been treading water this week, waiting for things to happen...

Four weeks after finishing the VanSel early phase drug trail, Steve is still not fully recovered from the side effects of treatment...or perhaps we should call them after effects?  

Although his facial hair has started growing again (back to daily shaves!) the hair on his head is now falling out more noticeably.  Hair loss wasn't listed as a side effect of treatment, so the trials team might be a bit surprised when we tell them what's happened at the post-trial check up next week.

Tiredness continues to be a problem.  Steve still doesn't feel confident enough to go out for a whole day, so sadly we had to decline an invitation to join friends on a day trip to the RHS garden, Wisley.  However, he did manage an afternoon out with our friends Jonathan and Sally on Bank Holiday Monday, visiting the gardens at Turn End in Haddenham, which were open to the public under the National Gardens Scheme.  Such a welcome change of scenery after spending so much time in the house or in hospital.

Turn End, Haddenham

The other highlight of the week was marking our daughter's birthday, albeit quietly at home.  When Steve was diagnosed, I wondered whether he would be able to celebrate her 21st birthday.  He did and it has been a great delight to be around for four more birthdays since then!

The rest of the week has been low key.  I've had my head down preparing for a work-related trip to Guernsey.  Progress the garden makeover project has been negligible as we are still waiting for quotes from the contractors who viewed the site last week and for another contractor to come and look this week.  He eventually arrived a day late due to an unexpected domestic crisis, but doesn't have a slot in his programme until the end of July.  The new fencing which was due to be delivered yesterday didn't arrive due to a mix up between the supplier and the delivery people.  Dreams of having a lovely garden in time to enjoy summer are fading rapidly....

In spite of all this treading water, May seems to be going by rapidly.  Fellow blogger Amanda was talking about time being elastic - how right she is...We feel unable to make commitments more than three months in advance, never knowing from scan to scan when the meso is going to flare up, yet here we are getting excited about a garden makeover which will take a lot longer to come to fruition!

Although Amanda's Ray is doing well, many of our other meso warrior friends  are going through, or about to start or re-start chemo or Phase 1 clinical trials.  

Thinking of you all, as always x

Sunday, 4 May 2014

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!