A huge effort and lots of relaxation

Yesterday, while we sat relaxing in the garden with our friends Jonathan and Sally under bright sunshine and blue skies, our son Jack was putting in a great effort to raise money for Macmillan Cancer Care by cycling 153k over the Brecon Beacons in the Wiggle Dragon Ride.  

Jack's photo of the Devil's Elbow:  the bit just before it got REALLY steep!

In old money, he cycled a total of 95.7 miles gaining 8,431 ft in elevation.  And he did it in 5 hours:50 minutes, excluding stops.  Well done Jack!  

Many thanks to all those who sponsored him.  If you are impressed by his effort and would like to show your appreciation, Jack's Just Giving page is still open for donations. You can access the link by clicking here ! 

Our efforts have been much more modest, including one trip to Bristol to see Jack and visit Steve's mum in her nursing home....although the latter was a bit scary - there was a hoist beside her empty bed when we arrived and we feared the worst.  As it happened, she had simply been moved to another room just down the corridor....But sadly, this time she didn't wake up, kisses and caresses notwithstanding.

The rest of the time since my last post has just been day-to-day stuff, plus a visit to the GP due to temporary problem with hearing, now cured by inflating a balloon by blowing through one nostril (no - I kid you not...Otovent designed for kids, even a grown up like me can do it!) plus an appointment to see the spinal surgeon about my back.  

I'll stay on the list for surgery in the longer term, but have opted for another nerve root block injection to deal with pain in the interim.  When you care for someone with incurable cancer like mesothelioma you tend to think twice before undergoing a major operation yourself, especially if the problem doesn't affect day-to-day life other than causing pain which can be managed effectively in less drastic ways, as in my case. 

Steve has noticed a bit more breathlessness recently when running up and down stairs, but nothing too debilitating. Consequently, we have finalised plans for our next adventure abroad...travel arrangements, accommodation, car parking and currency...all set to go soon!  But there is another exciting event due to take place next weekend, weather permitting.  More of that in my next post.....

Last but not least, it's been very good news for other meso warriors.  Fellow blogger Mavis in Kent has started her second year on the Keyruda (PD-L1) immunotherapy trial and her tumours continue to shrink, while Lou in Australia is having good results after three doses of the same drug, although the side effects are tough.  We are also thinking of Amanda and Ray who are due to get interim scan results today to see whether he will stay on the "tremi" trial (another immunotherapy drug). Fingers crossed.  

As always, much love to all the meso warriors out there, their families and friends x

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 March...so 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!