Tuesday 21 April 2015

Back in the system

Like many people with mesothelioma, since Steve was diagnosed in June 2009 our lives have been structured around regular hospital check-ups.  In Steve's case, visits every three months or so preceded by an X-ray or a scan to show what's going on inside.  

We have rarely made plans or commitments beyond the date of the next assessment, so have lived life in three month blocks of time at best (or shorter periods if Steve has been receiving treatment).  As appointment day approaches the tension mounts as we wonder what news the latest scan will bring us - "Scanxiety" as the meso warriors call it.  

But for all the uncertainty and scanxiety, being in the three monthly assessments system has been a comfort in many ways....at least someone is keeping a close eye on Steve (other than me); there is an opportunity to discuss his condition and treatment options at regular intervals; we know whether the cancer has shrunk, is stable, progressing or spreading.  

When Steve was taken out of the system last December (when the doctor estimated his life expectancy as a "small number of months") it came as a shock after five and a half years of having regular three monthly assessments.  It felt like we had been cut adrift.  We had lost something that had helped give some structure to the otherwise random and unpredictable pattern of our lives.  We did not realise how much we relied on that crutch until it was taken away.  

Steve could call the hospital or GP at any time and we had made contact with the local hospice so, of course, he hadn't been cut off from medical help and support.  However, not being offered an appointment for his regular three monthly assessment underlined how serious the doctor considered his condition.  If I am brutally honest, it also made me think that a "small number of months" wouldn't stretch to three....We were preparing ourselves for the inevitable.

Regular readers of the blog will know that the expected deterioration in Steve's health has not happened - not yet at least!  He no longer looks frail; has gained weight; energy levels have improved as has his outlook.  In short, he is not the same man as seen by the doctor last December.  At least, that was our assessment and the views of family and friends who have seen him over the last few months.  What we did not know until yesterday was whether the medical profession would think likewise.  

I am delighted to tell you that nurse Hannah, Oxford's new mesothelioma nurse specialist shares our view!  She even said to us that Steve is not the person she was expecting to see, based on the notes and letters on his file.  In her view, his performance status has improved and he is now well enough to take part in a further clinical trial, if he wishes to do so - an option not open to him four months ago.  

There is a mesothelioma-specific clinical trial in the pipeline in Oxford (and elsewhere) which will start recruiting later in the year.  The drug is Vinorelbine, one of a number of drugs developed from the periwinkle plant.  It stops the growth of cancer by preventing cancer cells splitting into two new cells. It has been used as a first line treatment for mesothelioma and other cancers so is not a complete unknown, unlike the early phase trials and dose escalation studies he has taken part in before. However, there has been no randomised evaluation of its effectiveness as a second line treatment in mesothelioma, which is what this forthcoming multi-centre trial will do. The trial is being lead by Prof Dean Fennel of Leicester University.  For more details click here and here.

Steve has expressed an interest, so we shall see what happens...

I still find it frustrating that he is not allowed to take part in immunotherapy trials because of his history of autoimmune disease - the google alerts are flagging up good news for a number of immunotherapy drugs.  However, at least Steve has a possible treatment option now, if he chooses to take part and is eligible.  

He also has an appointment for three months time, in mid-July, and will have a scan before then which will act as a new baseline.  So he is BACK IN THE SYSTEM!!!  You have no idea how happy and relieved that makes us feel.  We broke open the Prosecco last night and are now thinking about lots of nice things to do between now and mid-July.  Life is no longer standing still :-)  

We both know that it could all go horribly wrong, but it feels like we have been thrown another lifeline so we will hold on for all we are worth and enjoy the ride!

Monday 20 April 2015

trips, teas, dances and drama in the garden (amongst other things...)

In the fortnight or so since my last post, quite a lot has happened...

...there have been trips away from home in Oxford to visit our son in Bristol, including indulging in tea and cakes at Beese's Riverside Bar and Tea Gardens next to the River Avon - an iconic Bristol location we are told!  I had an overnight stay in the Channel Islands (business, rather than pleasure - although it was good to meet up unexpectedly with a former work colleague and enjoy a stroll along the beach as the sun set).  I also went on a photoshoot at the Sheldonian Theatre with Oxford Photographic Society, which was fun.

...three of our friends had birthdays, so we enjoyed a birthday tea with Sally and a birthday tea dance with Alison, including a "quick step" lesson (the dance that goes slow, slow, quick, quick, slow...) and tea and cakes presented on delightful vintage china.  We have yet to catch up with birthday boy Ian, but I'm sure we will make up for that!

...another friend, Sarah, was our house guest for the weekend and we enjoyed being tourists in Oxford for a change, watching the Morris groups dancing in the street as part of the Oxford Folk Festival and having lunch at the recently opened Weston Library cafe (recommended!).  

After waving Sarah goodbye, we met up with other friends from my time at the City Council - Richard, Alison and Claire visiting from France, and Mike and Audrey who laid on another lovely tea to keep us going as we caught up with each others' news.

There have been days when the weather has been good enough to enjoy sitting out in the garden, where the tulips are in full bloom and the bluebells and forget-me-nots are coming into colour.  On Friday evening, we were joined by a small bundle of fluff - a baby robin from the nest outside the kitchen door.  When we tried to put it back in the nest, it threw itself out again so definitely ready to leave home!  

We have been keeping an eye on it over the last few days, hoping that it will not be caught by the neighbourhood cats. There was a near miss this morning, but the cat was encourage to leave and the bird relocated to the bottom of the clump of bamboo where it can shelter and be screened. Phew....*

The other excitement has been the arrival of a new camera (but not enough time to play with it yet) and a major fire at one of Oxford's iconic buildings, the Randolph Hotel, which shut down the city centre and sent smoke over our part of town.  Thankfully, no one seriously hurt and the damage has been limited, which is surprising given the height of the flames and amount of smoke!

There have also been three visits to the Churchill Hospital - two for me (a regular mammogram and an appointment at the Pain Relief Clinic to discuss how to manage the nerve pain caused by damaged discs in my lower back) and one with the lung nurse specialist for Steve.  More of that in the next post.  

* Sad news on the baby robin front....We returned from Steve's hospital appointment this afternoon to find it floating face down in a flower pot where some rain had collected.  It is now buried next to the bamboo.  We hope the robins return to raise another brood this year.  From now on, all flowerpots will be stored upside down..... 

Thursday 9 April 2015

Easter treats

The sun came out eventually and we have enjoyed a wonderful Easter, full of treats!  

Easter Sunday, we travelled to London, booked into our Airbnb and then spent the afternoon and evening with daughter Katie and her partner Ed; exchanging Easter eggs, catching up on news, admiring the new work they have done on the flat and going out for a meal at a local gastropub, then sharing a bottle of prosecco before returning to the B&B.

On Monday morning, we all travelled into the City of London and zipped up to the 35th floor of the "Walkie Talkie" building to admire the breathtaking views over London from the Sky Gardens, as well as the terraced planting inside this huge glazed space.  

A walk through the city to Tate Modern for lunch, then another walk along the South Bank to London Bridge to catch the tube back to north London.  More tea and wonderful home baked banana bread to stoke up the energy levels before saying our goodbyes and driving back to Oxford.

Easter was officially rounded off by spending the evening with one of our neighbours, Jean - a good opportunity to catch up on news from the street and other matters of mutual interest over supper (including delicious home made cake) and more wine.  Thank you Jean!  

We extended the Easter break on Tuesday with a trip to Waddesdon Manor - our first visit to a National Trust house (and tea room!) in 2015.  This time, rather than explore the house and grounds, we donned the colourful capes provided and explored "Colourscape," an amazing inflatable labyrinth of 66 chambers full of light, colour and live music - like getting lost on another planet and great fun for all ages!  If it comes to a venue near you, be sure to go.

After a couple of "normal" days, we are gearing up for another busy long weekend, but making some time to enjoy the garden while the good weather lasts....and maybe think about who will win the Boat Race this year (come on Oxford!) and the Grand National on Saturday, although I think we may well be otherwise engaged when they are happening....

If you had told me back in early December that we would be enjoying a busy Easter this year, I would have found it hard to believe given the doctor's dire prognosis of a "small number of months" .... Well Steve is still here, still enjoying life and making the most of every day.  And long may it last!

Friday 3 April 2015

Happy Easter! (and a plug for Global Asbestos Awareness Week)

It's 21 weeks today since Steve was taken off the AZD0424 clinical trial due to disease progression and spread, and some four calendar months since the doctor said that without further treatment, his life expectancy was in the region of a "small number of months". And here we are, enjoying another Easter - rain, low temperatures and gale force winds notwithstanding!

The period since my last post has been one of growth and change, interspersed with bits of photography, including a memorable London Calling meet up with photographer friends from 1X.com (where we managed to take a few pictures in between eating and rehydration); a day at NEC where we met up with RPS friends at the Photography Show, handled a few cameras and became the proud owners of a new printer; and a studio session organised by Oxford Photographic Society - out of my comfort zone, but a good learning experience.

The growth has come in the garden, where plants are thriving, bulbs are blooming and seedlings appearing, including our first sowing of rocket underneath the big glass cloche Steve was given as a birthday present last month.  

Steve has maintained his weight gain, and is now stable at about 60 kilos in shorts and T shirt compared to weighing in at under 55 kilos fully clothed four months ago....that's almost a stone heavier (in old money) than his lowest point last November.

Whether his meso is still growing inside we have no way of knowing.  His last scan was in November and he doesn't have another scheduled (in truth, I don't think the doctor thought he would live long enough to make it worth arranging an appointment).  His next hospital appointment is less than three weeks away.  It will be interesting to see the reaction of the lung/meso nurse specialist when Steve walks in.  If she has read his notes from December and assumed his health has continued to deteriorate, she will be in for a pleasant surprise.

The printer we ordered at the Photography Show arrived much earlier than expected, so we had no choice but to bring forward the reorganisation of the loft to make a proper shared workspace/guest bedroom, with enough room to accommodate the extra bit of kit.  So the house has changed yet again...although it's still a work in progress and will keep us busy for a while longer.  

We continue to make regular trips to Bristol to visit our son who has moved back having finished his work stint in London, and to see Steve's mum who is still holding on to life by the slimmest of threads, but probably not for much longer...so another change on the near horizon.  

The social calendar is looking busy, with lots of good things to look forward to in the next few weeks to distract us from the electioneering.  However, other members of the wider Wride clan are getting stuck into politics: our niece and one of our nephews are standing as candidates in their local town and district council elections.  Good luck Heather and Matt - bring in the votes!

In the meantime, it's Global Asbestos Awareness Week. Please follow this link to find out more about this deadly carcinogen.  It will only take a few minutes each day and might save your life or the life of someone you love.