Wednesday 18 March 2015

Dividing our time

For the last two weeks or so, we have been dividing our time between home in Oxford, family in Bristol and (in my case) a work-related trip to Guernsey, with lots of packing, unpacking and repacking in between, depending on who was going where and for what purpose. There have been times when I have woken up and wondered for a moment where I was......

The GP advised the family that Steve's mum is fading fast, so we have been visiting her in her nursing home in Bristol as much as possible.  Usually, she has been sleeping but yesterday she was awake, recognised us and smiled.  We even had a sort of conversation - not easy when one person is profoundly deaf and talks in a whisper - but worth the effort of writing in big letters on a white board, knowing that it might be the last chance to give her our love and kisses.  

The previous weekend, we enjoyed a lovely meal out with friends Ruth, Anne and Colin...the same friends who persuaded us out of hiding back in December when Steve was feeling very low, and helped us get back on the path of positivity.  

We have also enjoyed our son's company at our home in Oxford and his house in Bristol, which we are helping him do some work on at the weekends when he's not working in London.  Makes a change from working on our own house...

Because we've been away, I celebrated Mothers Day on our return home yesterday where a big bunch of tulips from our daughter was waiting for us - thank you Katie!

Steve is still doing well, no pain and maintaining his weight. Doesn't need to wear a belt to stop his jeans falling down now!  The neighbours all admire his new look with short hair and a goatee even walked past without recognising him.  He looks like a new man :) 

The garden is doing well; daffodils are taking over from the crocuses and winter flowering pansies in the pots, and the clematis Armandii which climbs over the back of the house is in full flower, along with the rosemary in the little herb patch. Steve was given a large, beautiful glass cloche for his birthday by our dear friends Sally and Jon.  It's warming up a circle of soil ready so sow some rocket which we look forward to eating fresh in our salads in the not-too-distant future.  

Plans for the next 3-4 weeks are coming together nicely. However, we are reluctant to look much farther ahead than mid-April when Steve has his next clinic appointment with Hannah, the mesothelioma/lung specialist nurse. Nevertheless, we are keeping tabs on suitable clinical trials which are recruiting, so we can hit the ground running if and/or when Steve decides he wants to have another go.  In the meantime, we are just enjoying life taking each day as it comes, with no horrible side effects to manage and improving energy levels.  

Carpe diem, as they say!

Wednesday 4 March 2015

Social occasions and celebrations

It's been a busy time since the last post, full of social occasions and celebrations.  

I welcomed in the Year of the Goat/Sheep by dancing with lions in London's Chinatown.  Well, stood in a crush with my camera held high above my head hoping to capture something....but it was fun, anyway!

The following day, our friends Wayne and Terry came to us for tea in the afternoon and it was lovely to catch up on their news.  We go back a long way (pre-children) when Wayne was in the American airforce based in the UK and rented a flat with fellow service man Curtis above the little shop where Steve designed, produced and sold hand painted window blinds.  Both married English girls.  Although Curtis went back to the States, Wayne and his wife Terry stayed on and we have kept in touch on and off over the years, helped by contact on Facebook in more recent times.

Another social meet up the day after, this time in London with Margaret visiting the UK from Canada, via family in Belgium. We met initially online via the blog, having a common bond through our husbands, both diagnosed with mesothelioma. Then we met in the flesh last year in Oxford, when Margaret's husband Octave was still alive.  The meeting this year was bitter-sweet as Octave died late in 2014. But it was good to talk and listen to someone who understands being a wife/carer through personal experience.  And we had a jolly good tea at the Wolsey in Piccadilly, and lots of hugs and smiles as well as some tears.  Looking forward to seeing you again soon, Marg!  

Our son arrived early for Steve's pre-birthday gathering last weekend, followed by our daughter late on Friday afternoon for a family meal at home with just the four of us.  We were joined by our daughter's partner on Saturday, and all went out for a celebratory meal that evening - enjoying a taste of Spain in Al Andaluz, Oxford's Andalusian tapas bar.  Those with the energy went out for a run or walk on Sunday morning, then we had lunch together before saying our goodbyes.  

For Steve's birthday, we treated ourselves to a couple of days away in Cambridge, staying in a central hotel well located to go walkabout the historic core and along the River Cam, enjoying views of "the backs" of some of the University colleges and crossing back into town via the "Bridge of Sighs". Before going out for birthday meal No 2, we also enjoyed the Kings Voice choir singing by candlelight in the magnificent setting of Kings College Chapel, emerging into the twilight as the sunset faded in the west and the moon and Venus shone brightly above.  

More sightseeing yesterday morning, including a visit to the Fitzwilliam Museum before making the return trip home, tired but happy.

He was so poorly back last November/December, we wondered whether Steve would still be around for the New Year....let alone his birthday in it was a double celebration, still here and still enjoying life!

We also celebrated the remarkable news from fellow blogger Mavis that her immunotherapy trial drug continues to work its miracles; all of her tumours have shrunk and some have disappeared completely!  

Steve is excluded from immunotherapy drug trials because of his medical history of autoimmune disease and the risk that activating his body's own immune system would cause a serious flare up of his arthritis.  As a result, we have been waiting and hoping that the "Saatchi" Medical Innovation Bill would become law in this session of parliament, as it will probably give him options should he wish to try a novel as yet unlicensed treatment, there being no cure for mesothelioma.  

However, after a successful passage through the House of Lords, the Lib-Dems have scuppered that hope, and with it the hope of many terminally ill people who simply do not have the time to wait for the next opportunity for the Bill to be considered by the Commons.  In our 10 days of social occasions and celebrations that is the one fly in the ointment....

But we will not dwell on that bad news...there are more social occasions in the pipeline to look forward to, and lots to do in the coming weeks.  But nothing perhaps as good as listening to Steve talk to the hospice nurse on the phone the other day, telling her that he feels fine; no pain; good appetite; putting on weight and energy levels improving....And long may that continue!