Wednesday 30 December 2015

Recipe for a memorable Christmas!


Christmas tree, lights, baubles and a star
Wrapping paper, ribbons, sticky tape and tags
Cards, envelopes and letters (sent and received)
Balloons, streamers and candles
Christmas stockings
Presents (all sorts!)
Christmas crackers
Good food (all sorts)
Wine, prosecco and champagne
Board games, jigsaw puzzles and books
Music (all sorts, including Carols from Kings College)
Buck's Fizz, mulled wine and cider
Boxing Day walk 
A "bit of a do" with the neighboours

Do as much preparation as possible in advance
Get in the festive spirit by enjoying champagne and mince pies with the neighbours
Finish decorating the house and tree whilst waiting for the rest of the family to arrive
Turn off all alarm clocks
Lubricate the proceedings regularly with food and drink (and chocolate)
Rest as necessary
From time to time, stir games, puzzles, books and music into the mix of food and and drink (especially when experiencing chocolate overload...)
Liven up with a breath of fresh air as required, preferably with a riverside walk finishing at a picturesque pub that does mulled cider....
Phone up or meet up with friends, go to a pantomime, art gallery...whatever takes your fancy

Enjoy yourself!

Serves four
Preparation time - about a week
Cooking/enjoyment time - 7-14 days, if not longer

Our memorable Christmas is drawing to a close, but it's been lovely to have both Jack and Katie here with us at the same time and to hear about their plans for the future - new job, moving house - especially as we can't bring ourselves 
to look very far into the future, as things stand.  Although Jack returned to Bristol this morning, Katie is with us for a bit longer.  No doubt, she will "first foot" for us on New Years Day.  Who knows what 2016 will bring? Changes for sure.  We shall just have to see what and when. Come back and check in 2016.  In the meantime, a very happy New Year to you all, with our love xx

Wednesday 16 December 2015

Six and a half years on: A blog post from Steve :)

Today marks the six and a half year anniversary of Steve's diagnosis with mesothelioma.  Sadly, not many people live as long as he has with this cancer, so to celebrate this mini milestone (and because he hasn't written for ages) I have asked Steve to write something for today's blog.

Steve writes:

Is it my turn again? Well, there's a surprise. Six and a half years, who would have guessed I'd get this far. Makes me wish I took a bet out on my survival all those years ago, one guy with mesothelioma did and made quite a nice little sum. So much for statistics, they're never the whole story.

Looking back over these blog posts, I realise how many good things we've been able to cram in since diagnosis. Although it's not all been plain sailing, I've been very lucky to have had the time I have. A big thank you to Linda for getting me out of my chair and on the road!

That time has also shown me how many friends I have, all wishing me well, it truly is humbling and I don't deserve you. Thank you all for being there.

Talk again in six months time? Why not? See you then.

And now me again....

More good news - at long last, Steve's Attendance Allowance has come through, backdated to September when the application was originally submitted.  I can't bear the thought of going through all the form filling again when applying for for Constant Care allowance, so jumping through that particular hoop that can wait until after the festivities....

We have enjoyed more visits from friends..Jon and Sally came for coffee and pastries which rolled gently into a light lunch on Sunday - easier than going out for a meal, when Steve's appetite is so unpredictable!  Steve has started his Christmas course of steroids, so we are hoping for some improvement on that front over the festive season.

The District Nurses were back again this morning.  I've been shown how to clean and dress Steve's pressure sores, so will act as honorary DN in between their visits which will now be every other week unless there is a problem.  They are also sorting out the lardy cream for dry skin, which seems to have got lost somewhere in the system.  Steve is fantasising about Joanne Whalley "greasing" Micheal Gambon in Dennis Potter's Singing Detective...... (google if this means nothing to you!)

The DNs are going to ask for an Occupational Health Assessment to be arranged to see whether they can suggest any aids or adaptations which will help Steve now he tires so easily on exertion.

We're printing the last batch of Christmas cards, which (all being well) will be written and posted by the end of the week. Just waiting for one more present to be delivered.  The christmas tree is standing in a bucket of water in the garden, ready to be brought indoors for dressing when all the cards and pressies are on their way, and the decorations are on standby ready to go when the table is clear of wrapping paper, lists, cards and envelopes.  

With no planned guests until next week, we ought to have plenty of time to sort ourselves out even taking it easy, lingering coughs notwithstanding....Enjoy the run up to the holidays and don't get stressed xx

Friday 11 December 2015

DNs join the team

Although she arrived late on Wednesday - just as we were about to eat lunch - we forgave District Nurse Mandi at once. Oxford traffic is bad at the best of times.  Christmas shoppers, deliveries and roadworks at strategic junctions have combined to make it even worse at the moment.  

The important thing was that she came, she saw, and she took action - bathing the sore area on Steve's spine, drying it and dressing it with what I can only describe as a giant hydrocolloid blister plaster....perfect cushioning for pressure sores.  She will also ask the GP to prescribe a special lotion to apply to other bony bits to reduce the risk of more pressure sores developing in future, plus a special moisturiser for very dry skin - another of Steve's (minor) problems.

A different district nurse arrived today - Chrissie - and repeated the same procedure.  She also brought a soft, inflatable cushion which will help reduce pressure where Steve leans against, or rests on, solid surfaces.  Never one to have much spare flesh, he now has no fat and not a lot of meat on his bones so this will be a great help.  A similar product is available as a mattress, but he doesn't need that at the moment, preferring to sit on the sofa in the living room downstairs than to be propped up in bed, upstairs.

So the District nurses (DNs) will be visiting twice a week now to dress Steve's sore bits, for as long as necessary.  It's good to have them on the medical support team!

The GP has prescribed more steroids which Steve will start taking some time next week probably, to boost his appetite over Christmas.  

Slowly, slowly, we are printing and writing cards and have posted the first small batch abroad - so doing better than last year when we just managed a round robin email greeting. We'll get there in the end....

We had a lovely time earlier this week with visits from friends on Monday and Tuesday and are looking forward to more visitors on Sunday.  Just hope my cough clears up by then and energy levels improve.  It's a bit of an uphill struggle at the moment.  But at least we are not flooded like those poor people in Cumbria....Please stay, warm safe and dry!

Lastly, an apology to those who have sent lovely supportive emails and not had a reply.  Life is a bit of a blur at the moment, but we have read them and they do lift the spirits...and occasionally bring a tear to the eye.  Thank you xxx

Wednesday 9 December 2015

Joy and Frustration - the Attendance Allowance saga continues....and where is the District Nurse???

We have had a lovely couple of days, enjoying visits from our friends Agnes, Andy and Dave on Monday, and Keith and Glynis yesterday.  But the edge has been taken off the joy of the last two days by today's morning of frustration ....

Spoiler Alert - this post is a whinge...Feel free to ignore!

Back in September, I applied on Steve's behalf for Attendance Allowance under the Special Rules for terminally ill people. Such applications are supposed to be fast-tracked and processed within 11 days.  

Having heard nothing for a couple of months, I followed up in November and was told that although the application had been scanned in as "received" on 22 September, it had subsequently vanished without a trace.  

A duplicate set of completed forms was duly posted off that day at the Department of Work and Pensions (DWP) request, and I followed up again this morning, having heard nothing two weeks later.  

The first person I spoke to in "New Claims" unit told me I had got through to the wrong section.  They only dealt with enquiries from people making new claims and sent out forms. A different section dealt with people following up new claims which had been submitted but not processed....

So I rang again, got through to the correct section, only to be told that the only information showing up on the computer screen under Steve's name and National Insurance number related to Disability Living Allowance (DLA) - a different benefit for people of working age, rather than someone over 65 years, like Steve.  

In spite of my protests, I was transferred to the DLA unit, only to be told that I had been given the wrong advice. Surprise, surprise.  Transferred back to the Attendance Allowance Unit, I spoke to a different person, gave them the same information - Steve's surname and National Insurance Number - and explained the background again.

This time round, they found the record of the first attendance allowance application being received in September, and the duplicate application having been received in November.  But once again, the trail had gone dead.  The application hadn't even been registered, let alone processed in the fortnight since it had arrived at the Unit.  So much for fast-tracking applications for the terminally ill within 11 days.  We are now at 11 WEEKS and still counting...

The other frustration has been waiting at home for the District Nurse, who is supposed to be coming between 9.00 am this morning and 1 pm this afternoon.  Still no sign of her...

She is coming at the request of Hannah, Steve's lung nurse specialist, to look at a lump on Steve's spine which has developed into a sore.  Most people develop "bed" sores due to inactivity...Steve has a "sofa" sore where he has spent so much time sitting on the sofa doing crosswords, sudoku, browsing the internet etc etc  (or at least, that's what we assume it is...).  

Now, if I start lunch she is bound to come, isn't she?

With apologies for venting my frustrations on the's been one of those mornings

Sunday 6 December 2015

Festive feasts in the House of Coughs

The festive season has started early at Henry Road.  The Sunday before last, we hosted our first extended family festive gathering with the Bristol branch of the Wride clan. Last Sunday we did the same again, enjoying a festive feast with the Frome-based branch of the family, who kindly acted as courier bringing with them the wheelchair offered to us by Mandy, one of our Facebook meso friends. Thanks again, all of you!

This weekend, we have taken break from festive feasting to make some progress on other Christmas preparations - producing our first batch of Christmas cards and choosing presents.  How very different from this time last year, when we were still reeling from the news that Steve's life expectancy was thought to be a "small number of months" and could only manage a very low key festive season, with electronic greetings rather than home produced cards and no socialising......

This year's festive socialising begins again tomorrow, with visits from our friends Andy and Dave dropping in on their back home to the Peak District via Oxford, and Agnes calling by en route to Luton airport before she flies back home to Budapest.  On Tuesday, it's the turn of more friends from our student days - Keith and Glynis - combining a short break in Oxford with a visit to us before heading back to Bury St Edmunds.  More visitors are coming next weekend, so lots to look forward to!  That means a lot to us, now we are spending so much time based at home. 

On the health front, Steve's not sure whether the mucus-thining medication is working, but he's still coughing a lot, whatever.  Over the last few weeks our son, who is staying with us at the moment, has also been soldiering on with a bad cough.  Just as he started to get better, it was my turn to joining the coughing choir and keep our poor neighbours awake at night....Hopefully, we are both past the infectious stage by now.  Wouldn't want to pass on this bug as an unwelcome Christmas present to our visitors....

So...its beginning to feel a bit like Christmas.  Present deliveries in the pipeline; off to get the tree some time later this week; cards to write and post...

....But amongst the mesothelioma community, the people who had the very best Christmas present this year are fellow meso warrior Mavis and her husband Ray.  The "Keytruda" immunotherapy drug trial she has been on at the Royal Marsden has worked for her.  Her last scan showed no active cancer.  Mavis and Steve were diagnosed with mesothelioma around the same time in 2009, so we have been walking hand in hand on this journey for well over six years now.  We are so pleased to hear Mavis's news!  Lou in Australia is having similar positive results.  Quite a Christmas miracle in its own way - what better present could you wish for?  If only Steve was eligible for immunotherapy trials....

But there's no point in "what ifs" - we need to live in the here and now and make the most of this festive season.  Bring it on, as they say.  Here's hoping for some more miracles  x