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

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

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 blog....it's been one of those mornings

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

Home entertainment

No blog posts for a over a week, and now three come along together.  Here is number 3

As getting out and about now is difficult for Steve, we are now enjoying the company of family and friends at home where Steve can take himself off quietly for a nap if he feels tired and doesn't have to worry about what/when/how much to eat - issues which makes dining out a bit tricky, even if we can get him to the pub/restaurant by car and wheelchair now that he is unable to walk very far.

So....we've been entertaining at home instead!   

My old school friend Angela kick started this round of visits, joining us for tea and cakes the week before last.  On Sunday, both our grown up children were here for lunch, along with the Bristol-based Wrides - nephew Nick, his partner Kate, daughter Esme and mum Di.  And jolly wonderful it was too! 

Yesterday, our friend Ruth dropped in for a chat on her way home after visiting her daughter Emily and baby grandson Reggie.

This coming Sunday, it's the turn of the Frome based Wrides to come for lunch - Steve's brother Martin, his wife Mary and son Mathew, together with Jack and Katie, our son and daughter. Martin will be bringing a wheelchair offered to us by a meso friend on Facebook. Mandy - you are a star!

Other friends are coming in early December - Andy and Dave on their way back to the Peak District, and Keith and Glynis taking a short break in Oxford to visit us at home.  Looking forward to it very much....

Home entertainment in the company of family and good friends - nothing to beat it!

Times they are a changin'

No blog posts for a over a week, and now three come along together.  Here is number 2

In May we were in Seville, climbing the Giralda tower, exploring the Alcazar, wandering around the Metropol Parasols, watching Flamenco and eating tapas....In June we visited Malaga, enjoyed the museums, walked around the port and up and down the beachside promenade, explored the Mesquita in Cordoba, drank mojitos and eat seafood at beach front bars.....In July, we found ourselves dancing to world music at WOMAD....In early August, we bopped the night away to Geno Washington and the Ram Jam Band at the Retro Festival, with only short breaks to recover between dances.  

It's only been a few months since we were having all this fun, but it seems like a lifetime ago so much has changed since then.....

Here and now in November, Steve can't walk very far under his own steam; the effort of getting up, dressed and downstairs tires him out so much that he needs a rest before tackling breakfast; his energy levels are so low, he's become a semi-permanent fixture on the sofa. I am reluctant to leave him on his own for very long, in case he needs something and hasn't got the energy to sort it out for himself. Cabin fever is looming large....

A course of steroids gave Steve's appetite a boost, but only a temporary one.  Now its going off again, he's chewing more and eating less.  Not surprising then that we have felt unable to accept some generous invitations from friends offering to take us out for a meal.  Since peaking at almost 60 kilos in July, he's lost almost 10 kilos (a stone and a half) in weight in spite of not doing much physical activity to burn calories.  

The persistent cough can quite literally be a pain in the side after a bad spell and, on a couple of occasions, has made him sick.

So...that's the bad news.  

The good news is that the new mucus-thinning medication seems to be helping with the cough. He can go back on steroids after a break and is hoping to time the next course to coincide with Christmas, so he can enjoy the festive food with family.  The delivery of a wheelchair on Sunday will open up the option to get out and about more (weather permitting), if Steve feels that way inclined and can overcome the psychological resistance to accepting his physical limitations.  

Perhaps best of all, is that family and friends now realise and appreciate that our social life has changed and are doing their best to accommodate us.  We still love to see people, but its easier to do that here than to arrange to go out somewhere.    So..to use that rather prosaic idiom, we are now "at home" most days for visitors, (but with a bit of notice please, and on the understanding that Steve may take himself off for a rest if he feels tired).  More of how that's working out in the next post!

The importance of following up

No blog posts for a over a week, and now three come along together.  Here is number 1

Following up 

• Hospital and GP

Steve had his post-radiotherapy follow up appointment at the hospital last week.  It was a bit weird as there was no "after" scan to compare to the pre-treatment baseline scan, and no physical examination. Dr P mainly wanted to talk to Steve about how he felt things were going and to find out if the radiotherapy had eased his breathing.  

After a long chat, we came away with a recommendation that the GP prescribe mucus-thinning medication (Carbocisteine) to help him clear muck from his chest more easily (bad coughing bouts send his stomach muscles into spasm) and a suggestion that he take prescribed codeine linctus when the coughing gets really bad (along with a laxative to counteract the side effects).  

We also discussed the benefits of steroids to stimulate his appetite and our concerns that his appetite is going off again now the course of steroid treatment is over.  Dr P suggested having a two week blast of steroids at full dose, followed by a break, then another two week blast (and so on), rather than a long course which starts with six tablets a day and tapers off by reducing the dose one tablet a week until there are none.  

While we were at the hospital, we also had a session with the dietician.  It seems we are doing the right thing at home, using full fat milk/butter/yoghurt, eating lots of soups and making smoothies, which are easier to swallow than chunky food.  She suggested having the evening meal a little earlier in the day when Steve seems to have a better appetite, and having a smoothie later in the evening.  She also pointed out that ordinary skimmed milk powder is just as good as the expensive protein powder we have been buying to make shakes - very helpful!  We came home with a leaflet of smoothie recipes which we must try out...

We followed up these suggestions with the GP, and the mucus thinning medication seems to be helping.  His appetite is variable.  However, we need to wait a while before he can have another blast of steroids. In the meantime, the weight has started to drop off again - another kilo over the last week. He is disappearing before my eyes....

• Blue Badge (Disabled Parking Permit)

Having applied to renew Steve's Blue Badge Disabled Parking Permit a good six weeks before it was due to expire, we eventually followed up with the Highway Authority having heard nothing for a month - the application was showing up as "received" on the County Council tracking website, but no action taken.  An exchange of emails with the Blue Badge team, and we advised that there had been a problem with the "system" but that application had now been processed and was being sent "fast track" for delivery.  Two weeks later, still nothing so we followed up again, only to be told that it hadn't been processed after all.  The lady Steve spoke to did it there and then, whilst he was on the phone. The new Blue Badge finally arrived two days before the old one was due to expire, to our relief. But so much unnecessary stress.....

• Attendance Allowance

Back in September, I applied on Steve's behalf for Attendance Allowance and then promptly forgot about it, knowing how long these things take even when fast tracked under the Special Rules for terminally ill people.  Today, I realised it was over two months since the application had been posted and we had heard nothing, so I followed up with a phone call.  It seems that the application had been logged as received on 22 September and scanned in, but had then disappeared into a black hole somewhere in the Attendance Allowance Unit - both the original application and the scanned copy.  So I was asked to complete the form again....How frustrating!!  Luckily, I had an electronic copy of the original completed form so that has been printed out and posted off again.   If I hadn't followed up, we would have been none the wiser.  I'll have to keep better track of it this time around....

• Post Office Savings

I'm finishing this blog post on a lighter note with a happy ending.  In the process of putting our affairs in order, we came across a very old Post Office Savings book, which Steve's parents had opened for him when he was only two weeks old.  The last withdrawal had been in March 1967, leaving the princely sum of £1 and 3 shillings still in the book. Out of curiosity as much as anything else, Steve completed an online form used to track down "lost" accounts and, a few days later, he received a cheque in the post for £3.51p, being the outstanding balance plus 44 years interest!  

Isn't it strange how such small things can bring a smile to you face :-)