Wednesday 25 September 2013

A New Term

Although it's been a while since our lives revolved around the academic year, September still feels like the start of a new term and all that entails - reunions with old friends and making new ones; revisiting a familiar place or perhaps getting to know somewhere different; starting a new challenge or going forward on a work in progress.  Fresh, new, exciting times ahead in the new term, even though it can be a bit scary at times.  

And that's how it felt for us over the last few weeks.  Our new 3 month term of life got off to a good start with copy of the letter sent by Steve's hospital consultant to our GP.  It was a bit like getting a school report at the start, rather than the end, of term - we knew from the assessment earlier this month that Steve's condition is still stable, but it was reassuring to see the confirmation in black and white:
"Status: He remains well and performance status 0 (i.e. fully active and more or less as he was before his illness).  Maintains active physical exercise.  On examination he appeared well with no palpable lymphadenopathy (i.e lymph nodes do not appear to be enlarged). Expansion of the chest was equal.  No clinical evidence of recurrent disease.   
Test Results: Chest X-ray: stable appearances  
Assessment: Stable disease"
Until a cure is found for mesothelioma (and it WILL happen) this is as good as it gets!

Since the assessment on 5 September, we've had a very sociable time.  

Our son Jack came to stay for a few days.  We really enjoyed his company, had a meal out to celebrate his birthday, watched the excellent German cult movie "Run Lola Run" and visited All Souls College which was open to the public as part of the Oxford Open Doors weekend.

Codrington Library, All Souls College

We spent a very pleasant morning over a coffee catching up with news from John, Oxford's former Conservation Officer with whom I worked for many years.  Ironically, he now finds himself on the receiving end of planning and conservation advice (from a different local planning authority) and is not very impressed by the experience...

We had a day trip to London last week to meet up with our Italian friends Giuseppe and Maria Adele.  We had last seen them in a cold, snowy Rome in February 2012 where we had been overwhelmed by their kindness and generosity.  This time round, it was our turn to play host - albeit for a few hours - with lunch at Tate Modern, followed by a stroll over the Millennium Bridge and coffee overlooking St Paul's cathedral where we said our good byes.  It was lovely to see them again and we have plans to meet up again soon.  

Maria Adele, Giuseppe and Steve at Tate Modern

There was a full house here last weekend.  Our friends Helen and Rob arrived from Leeds on Friday night, stopping off in Oxford for a wedding on Saturday before moving on to London on Sunday and flying to the States on Monday.  We were joined by more friends on Saturday - Anne and Colin up from Chichester and Ruth, just back from a visit to Croatia - so lots of mutual news to catch up with over a slap-up tea, followed by drinks and nibbles in the evening and into the wee small hours.  We burned off some of the calories after breakfast on Sunday with a walk along the Thames to the Trout Inn at Wolvercote for a pint, then home via Port Meadow for more food, eventually saying our farewells late afternoon after a very enjoyable weekend.

Steve, Rob and Helen post-pint at The Trout Inn, Wolvercote

Helen and Rob were the first people to stay in our new guest room - now carpeted and (mainly) furnished. The old sofa bed will be the last thing to go and, once the space has been cleared, there will be a proper bed for our next staying visitors.  All we have to do now is bring the rest of the house up to the same standard!

Somewhere comfortable for our guests to sleep :-)

In between all this socialising, we have been backwards and forwards to Ikea a couple of times buying smaller items for the guest room; assembling flat pack furniture; putting a few bits and pieces on e-Bay as part of the ongoing de-clutter, and progressing our plans for October (although we still don't have an appointment for Steve's next scan, so I hope there won't be a clash). Flu jabs are booked, so that's another thing crossed off the "to do" list.  

I even managed to fit in a work-related conference on Planning for an Ageing Population (a bit of enlightened self-interest there).  However, an event like that highlights the downside of our personal circumstances. While the UK population as a whole is living and staying healthier for longer, like others with mesothelioma, Steve's normal life span will be cut short by a disease which could have been avoided had asbestos fibres not been released into the air in his presence.  That said, this knowledge encourages us to live for the day and make the most of the time we do have together.  And we certainly do that!

On the photography front, I volunteered to step in as a replacement judge for the photographic section of a local village show.  We had a fun time watching others judge the fruit, flowers, vegetables and cake classes, as well as looking at the photos.  Living in the city centre, it's easy to forget that Oxford is in the heart of a very rural area. Going to a village show was a bit like walking into a real life episode of the Archers (for those of you outside the UK, that's a very long running radio programme based on the "everyday story of country folk").

Other good news on the photography front - one or more of my images will be included in Portfolio 3, published by the Royal Photographic Society this month. The complementary copy of the book has yet to arrive, so I still don't know which image has been included.  However, I do know that two of my photos (below) have been selected for the RPS International Images for the Screen exhibition which opens in London on 31 October.  

Strings and Shadows

The Finger Points

We'll be going to the launch, so that's something to look forward to next month.

We were invited to another launch this month - this time a book "On foot from Oxford Castle to St Giles", which was written and illustrated by Malcolm and Edith, friends I used to work with at the City Council. That event coincided with the last day of St Giles Fair here in Oxford - a street fair held on the first Monday and Tuesday in September in one of the city centre's most historic streets which is closed for the duration. The contrast between the fair and its surroundings couldn't be stronger!  And its very photogenic... 

While we've been enjoying life and having fun, other members of the meso community, including many of our fellow bloggers, have been having a tough time with bad news, pain and dealing with the debilitating side effects of chemotherapy.  Sending you strength and much love x

Thursday 5 September 2013

Assessment day

The elusive pink slip for Steve's X-ray didn't arrive in the post, so we hoped it would be waiting for us at the reception as promised, when we arrived at the hospital this morning for Steve's assessment.  To our delight and relief, there it was, ready and waiting for Steve when he checked in at the day clinic reception on arrival.  

As it was close to the appointment time, I returned to the waiting area in the day clinic while Steve had his X-ray. We usually have to wait a 20-30 minutes, sometimes longer, before being called in from the waiting area to the consultation room.  Today, Steve's name was called right on time - while he was still in Radiology - so we had to wait for the next available slot to see the consultant.  

The last few assessments have been carried out by one of the registrars.  Today, to our surprise and delight, it was Doctor T himself - always relaxed and able to put us at our ease.  He didn't keep us waiting in suspense. He told us that he'd looked at Steve's X-ray and could see no discernible change. On physical examination, the chest sounded good. If you read the blog regularly, you will know that Steve is very fortunate to have no other symptoms usually associated with mesothelioma - no pain, not even the breathlessness that he was aware of a couple of years ago.  

His weight is down a little on this visit, which is easily attributed to being weighed today wearing a T shirt and cut-offs rather than the usual jeans and jacket, and the fact that we've had a bit more physical exercise recently, refurbishing the spare room.

Unlike most hospitals which give meso patients CT scans every three months, up to now, ours has only taken scans as part of a chemo regime to assess response to treatment. The rest of the time, they use X-rays which deliver a lower dose of radiation, and only follow up with a scan if the X-ray shows a noticeable change in the cancer.  

I was therefore a bit concerned when Dr T said he would like a CT scan before Steve's next assessment in December, and queried whether this was because of something he'd noticed on the X-ray. We were reassured by Dr T that there was nothing on the X-ray to cause concern. He just thought it would be about time by then for another scan to compare to the one taken at the end of the second line chemo regime which finished earlier this year. 

We had a short discussion about scans and the fact that being more detailed, they can show up areas of meso activity not visible on the X-ray.  Dr T said that some people prefer not to know this level of detail, especially if they are feeling OK otherwise.  Did Steve want a scan, bearing this in mind?  The answer was yes.  So that's what happens next.  

The appointment will probably come through in the post in 2-3 weeks time.  If we want to know sooner, we can ring radiology in a week or so and enquire about timescale, so we don't have to hang around waiting for the appointment before sorting out our plans for the next three months.

The pink slip of paper requesting a scan will be filled in today, photocopied by his secretary to "prove that the request was made" as he said, then taken to radiology to be processed.  So much for the paperless office!

And so the next three months has opened up for us and we can look forward again.  Time to firm up those "pencilled in" arrangements and make plans!  Lots to look forward to in the coming months to make the most of the time between now and the next appointment on 5 December.  

As Steve said as we walked out of the hospital, even if the forthcoming scan indicates meso activity which justifies further treatment, it's unlikely that chemo would start straight way.  All being well, he will be able to enjoy Christmas 2013 and celebrate with a bottle (or two) of fizz, unlike last Christmas when he was four cycles into a six cycle regime of Alimta and carboplatin and not feeling so great.  

Which reminds me - time to put the fizz in the fridge for tonight's celebration and make the most of the sun on what looks to be the last day of summer here in the UK.  Raise a glass with us this evening!

Celebration of Lights by Talha Tariq

Here's hoping that other meso warriors have good news today and next week.  Fingers crossed for all of you xxx

Tuesday 3 September 2013

keeping busy as assessment day approaches (and the saga of the pink slip...)

When Steve was diagnosed with mesothelioma in June 2009 and underwent his first regime of chemo, our priorities changed.  We were in and out of hospital so much on the Velcade drug trial that housework chores were reduced to the minimum necessary to stay clean and healthy.  House and garden maintenance was put to one side, only to rise to the top of the "to do" list in an emergency.  

When the drug trial finished and Steve had recovered for the side effects of chemo, the priority was to get out and about visiting family and friends, enjoying new experiences and seeing a bit more of the world - those places you always plan to visit but never quite get round to organising the trip...And that's more or less how things have carried on for the last four years, making the most of the here and now!

However, our neglect of maintenance has taken its toll on the house and garden to the point we felt we needed to take action.  And that's what we've been doing these last few weeks - clearing the spare bedroom;  dismantling the old play/sleep platform; cleaning; plastering (not us - a job for Ian the plasterer); prepping woodwork and priming bare plaster; painting, painting, and more painting - ceiling, walls, window, skirting boards, fire place surround....

Today, the door was taken down and trimmed ready for the carpet fitters on Monday.  Some larger items of new furniture are on order and will be delivered the week after. The spare room transformation is underway and progressing well, so our next staying guests should be enjoying the results in a few weeks time.  

All this activity has meant that we have been too busy by day and too tired by night to dwell on Steve's assessment on Thursday.  So much so, that we had forgotten that Steve has not received a "pink slip".  This is not as you might imagine, an item of underwear!  It's a sheet of pink paper the consultant gives to the patient at one assessment which is taken by the patient to radiology at the follow up assessment so that the doctor has an X-ray to look at and compare to previous X rays before the subsequent consultation and physical examination.

Most meso warriors seem to have a scan every three months or so to monitor their cancer.  Our local hospital seems to be one of the few which relies on X-rays to inform the quarterly assessment.  Scans are only used to follow up any signs of disease progression.  When questioned why, one doctor said it was because scans expose the patient to 20 times the amount of radiation compared to an X-ray.  

However, the last registrar we saw back in June asked about Steve's scan regime and seemed surprised when we told him it was usual to have an X-ray, rather than a scan. He said he would follow this up with the consultant.  As a result, Steve was not given the pink slip to take away, ready to bring back to the hospital for an X-ray prior to the next assessment in September.  

The follow up letter to the GP (copied to us) said "this gentleman remains very well in himself and has recovered from the toxicities following his chemotherapy.  We plan to see him in three months time with a repeat chest X ray beforehand, but should he become symptomatic we can organise a CT scan."  

At that point, we contacted the hospital to ask to be sent a "pink slip" to take to radiology at the September assessment.  We waited so long for the pink slip to arrive, we eventually forget about it until a few days ago. Another phone call, another explanation, and still nothing in the post even though the assessment is on Thursday.  If nothing arrives tomorrow, then it will be another round of phone calls to make sure radiology is expecting Steve on Thursday morning and will do his X ray in time for the doctor to have a good look at it before the appointment.  

It beats me why a modern cancer centre which only opened in 2009 has such an archaic system.  Why does a doctor in the day clinic have to give a patient a bit of paper to take to the radiology department just down to the corridor when the X-ray is already booked in electronically (or I assume it is - they seem to be expecting Steve when he arrives). He still has to go through all the security checks to confirm he is who he claims to be...It just seems to be an unnecessary extra step for the patient who has to keep the form safe for 3 months and then remember where it was put for safe keeping, not to mention all the trees that went into making the pad of pink paper....

Rant over.  I thought I was dealing well with the stress of the approaching assessment, but may be not as well as I thought!  However, getting stuck into a DIY project does seem to take the mind off things, as well as being productive on the home front.  If we did a project for a couple of weeks before every one of Steve's assessments, that would be a great way to get the house and garden in good condition and combat "scanxiety"!  

We are not the only ones waiting for results around now. Amanda and Ray will hear about his scan results on Friday. Steve in Australia will get his on 12 September.  Fingers crossed for all of you.  Big hugs and positive thoughts to Lou in Australia who is having more chemo this week, and to Mavis in Kent who is determined to finish her current regime of fourth line chemo.  Sending much love to you both.  And a very big hug to Jan and Gary who had to cut short their holiday cruise as Jan is not well enough to continue. She needs and deserves a break.  Here's hoping so much that things work out for you, Jan x. 

Next post will be the results of Steve's X ray and assessment - always assuming that the saga of the missing pink slip does not put a spanner in the works on Thursday....