Wednesday 25 November 2015

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. 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 :-) 

Sunday 15 November 2015

We are not alone

First, a big thank you - you wonderful people!  

In response to my last post, we have been inundated with comforting messages of support; enjoyed reading your good news and looking at your photos; received a lovely bunch of fresh freesias from my work colleagues in Guernsey, an offer of a wheelchair from a meso friend on Facebook and other offers of help; had a visit from an old school friend and arranged more visits in the near future, with family and friends coming here at various times over the next three weeks or so.  

Both of our grown up children are now visiting more often and staying over for longer, which is great from our point of view.

We definitely do not feel alone and are touched that so many of you are sharing our journey.  A heartfelt thank you to you all x

Steve is now down to taking one steroid tablet a day and his appetite is holding up most of the time.  Although his weight has dropped to just under 52 kilos, its remained stable over the last week, which is a small relief.  However, he often feels full up before he has finished his meal, eating the last few mouthfuls is often a real effort and stomach cramps are not unusual.  

After a long talk on the phone with the hospice nurse, he has arranged to see the hospital dietician when he goes to his radiotherapy follow-up appointment next week. He's already on a high calorie diet with protein supplements, so it will be interesting to see if they can suggest anything else.  

What else on the meso front?  Well, the cough goes on (and on and on...) and after particularly long bouts, it causes a stitch-like discomfort in his abdomen.  And the lumps on his chest where the cancer has grown through the chest wall are still expanding slowly.  I'm tempted to say better out than in, but we both wish they weren't there at all...

It's now approaching a year since Steve was told his life expectancy was a "small number of months" and nearly six and a half years since he was diagnosed with mesothelioma, so we still consider ourselves very lucky in very unfortunate circumstances.  

Since diagnosis, we have come into contact with many others on the same journey, including fellow bloggers.  Sadly, many of our meso blogging friends have written their last posts. However, there are others who have taken on the role.  I have added more links on the right hand side under the heading "We are not alone" to mesothelioma blogs by Heather, Claire, Linda (Lakin), Lorraine and Dave who are all at different stages of their journey.  

The bottom line is that we don't really know where Steve is on his meso journey.  He's been told before that the end is nigh, and then bounced back to everyone's surprise. Whether he will do a repeat performance this time, we'll just have to wait and see.  However, one way or another, we've had a long time to prepare for the inevitable (and are still working on getting our affairs in order - there's always something more pleasurable to do....).  How different to those poor people in Paris who went out to enjoy themselves on Friday night and will never go home.  We join with others around the world to tell the people of France that they are not alone.

Sunday 1 November 2015

time for some lifestyle changes...

Those of you who have followed this blog for a while will no doubt remember our friend and fellow meso warrior Tess Gully, whose own blog "Targets" was an inspiration for many until her untimely death in August 2014. 

Steve does not have a "bucket list" and, unlike Tess, has not been in the habit of setting targets. However, he is a great fan of rugby union and over the course of the last year or so has his cancer has continued to progress, he has wondered whether he would still be around to see the final of the rugby world cup.  Well, that "target" was achieved yesterday, in the company of our good friend Ian and a number of bottles of beer in front of the TV.  Not the final they had been hoping for, but good fun nevertheless!

Sadly, Steve didn't feel well enough to come into town on Friday night to join in the fun as friends and former colleagues said (another) goodbye to Murray who has after many years left the City Council, where I used to work a millennium ago.  Steve has been out of the house, but only as far as the car to drive to places too far or difficult to reach on foot or by bus. Once we have arrived, he has preferred to stay put in the vehicle rather than accompany me on errands.  

I think this is a sign of the times and shape of things to come. Until and unless he decides he is ready for a wheelchair or mobility scooter, Steve's physical horizons will be limited to the house and garden, the street outside and views through the car window.  And social life will probably be home-based. You will have to come to us, rather than us come to you....So if you are down this way, please do drop in if you are passing, or give us a call to arrange for a longer meet up over tea, coffee, drinks or a meal if Steve feels up to it.  

Although he is eating well most of the time, Steve's weight is reducing inexorably.  He's now down to 52 kilos (just under 8 stone 2 lbs) in shorts and a T shirt - a loss of 1.6 kilo/3.5 lbs in the last ten days.  In truth, that's rather scary...We can't blame it on the side effects of a drug trial like we could this time last year.  The word cachexia rears its ugly head again...

Yesterday, returning home after a trip to the garden centre, we bumped into Mark, an old friend and former neighbour in the street - always a pleasure to see!  The conversation started with the normal pleasantries including the usual question, how are you? 

Steve started to say "I'm fine.." but then stopped himself and admitted that actually, he's not feeling too great at the moment.  How do you respond to that, knowing that the cause of the problem is without a cure, and that hoping someone will get well soon is therefore not really an appropriate response in the circumstances? 

Well, there are no words. At least, no easy words. We know you don't want Steve to die or to be in pain. Take that as read. There's no need for a deep philosophical response, even if you can think of one off the top of your head. Swearing is permitted as a way of expressing your feelings and emotions. Black humour is keeping us going too!    

The bottom line is mesothelioma is a bugger and it's not going to go away.  If you really want to know how Steve is you will have to face our demons with us.  Its difficult, but it's just about do-able...believe me.  The fact is, life goes on until the last breath is drawn - and we both feel that Steve is still some way off that (although he's just told me that he's decided against investing in a new pair of jeans....see what I mean about black humour?)  

For now, we need to find ways of managing the changes imposed by the disease so we can make the most of life in the best ways possible. So bring us a bit of sunshine, smiles and laughter, funny stories, your news, maybe a bunch of flowers, and most importantly, your good company...either in person, or via letters, emails and phone calls (but please don't be offended if you happen to call at a bad time and we can't talk right then, or you don't get a response to your email).

I didn't start out intending to write stuff like this today, but it's like someone pressed a button and it flooded out.  Writing the blog helped me articulate and face the fears and emotions when Steve was first diagnosed back in 2009, and I have the feeling that it will be doing that again in the foreseeable future. 

In the meantime, life goes on....Steve wants his hair cut; there are winter flowering pansies and violas waiting to be planted out on top of the pots of crocuses, daffodils and tulips ready for next spring; a meal to prepare and an opportunity to enjoy the blue sky, sunshine and autumnal colours.

Love to you all x