Wednesday, 25 November 2015

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 :-) 

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