Thursday 29 October 2015

ups and downs...

It's been a week or so of ups and a few downs.

The ups have mainly been on the social front....

A visit from Steve's brother last Friday so that they could go to the Oxford Probate Registry together to swear the executors oath relating to the estate of their mum, Jean, who died in September.  The grant of probate came through today - much sooner than expected - which is a relief, and another load off our minds.  

A visit from our friends Ruth, Anne and Colin last Saturday who dropped in for coffee and pastries en route to see mutual friends - we loved the chance to catch up on their news and have a long chat, lifting the spirits as always!

Our son is also staying with us at the moment, so we have been enjoying his company much more so than usual and are making the most of it, before he disappears back to Bristol.

On the health front, Steve is in the process of weaning himself off the Prednisolone steroids which he is taking to stimulate his appetite.  The dose has been reduced to four tablets over this last week, and will go down again tomorrow to three tablets a day, for the next week.  

The good news is that his appetite has not diminished with the steroid dose reduction and he's still eating well.  However, after a period of stability, his weight dipped from 53.3 kilos to 52.6 kilos three days ago.  That's just under 8 stone 4 lbs in shorts and a T shirt.  Whether it's a blip or a downward trend only time will tell....

The sporadic coughing continues - usually associated with movement.  As a result Steve does not look forward to getting out of bed or indeed doing any activity which involves physical exertion, knowing that it will probably trigger the cough which makes him feel puffed out. It's an effort to get up, get dressed and get himself downstairs, by which time he needs a rest to recover.  

Not surprisingly, he will happily spend most of the day sitting doing crosswords, sudoku, browsing online, reading a newspaper (and being waited upon...) Not surprisingly also, his inactivity has the opposite effect on me!  Not the best timing, now the nerve root block injection I had back in August is beginning to wear off making the pain in my lower back increasingly noticeable.  

Steve's follow up appointment has now come through in mid-November.  Another three weeks or so before we find out if the course of radiotherapy has shrunk the tumour which is severely restricting the passage of air to the lower lobe of his left lung.  Hopefully, he will notice an improvement before then..

...Keep your fingers crossed for us!

Tuesday 20 October 2015


Since my last post, Steve has been zapped.  Five times, on the Linear Accelerator (LINAC).  Three radiotherapy sessions last week and two this week, finishing this morning. No horrible side effects so far, but the impact of treatment is cumulative and has yet to reach its peak, so we are not out of the woods yet...

He has been tired, but so have we both as a result of setting the alarm for silly o'clock so as to be at the hospital before 8am.  The fatigue may be the result of treatment, getting up early (for us!) day after day, or a bit of both.  We're looking forward to not having an early morning alarm call tomorrow....

Back to hospital again in four weeks time to see if the radiotherapy treatment has shrunk the tumour that's constricting the passage of air into his lower left lung.  I assume he'll have another scan before then to compare to the base line scan taken before treatment, but we don't have any dates yet.  If the radiotherapy is working, he should start to feel the benefits of increased lung capacity, so we should have some idea of its effectiveness before the next appointment.

Steve is now in the second week of taking the full dose of Prednisolone steroids (back up to six tablets) to stimulate his appetite which had all but disappeared, along with a lot of weight.  From Friday onwards, he'll start being weaned off the drug as long term use causes all sorts of problems.  One less tablet per day over each successive week, until they run out. I hope they can prescribe another type of steroid if the loss of appetite returns.... 

But for now, the Prednisolone seems to be working.  He's eating more but hasn't gained any weight.  However, the weight loss has been stemmed and now stabilised around 53.3 kilos/8st 5lbs 6oz in shorts and a T shirt.  

I am sitting here wondering how to finish today's post.  I'd love to tantalise you with hints about future plans, but in truth there are none.  We're just taking each day as it comes; fulfilling commitments and not taking on new ones for the time being; taking the opportunity to tie up some loose ends as and when things pop up, but not looking to far into the future.  

Lastly, heartfelt thanks to those of you who have sent lovely messages.  Sorry I haven't replied individually.  This last week has been a bit of a blur.  Hope to catch up with you soon x

Saturday 10 October 2015

What a difference a day makes...

For various reasons, the phone was hot yesterday with lots of calls including one from a doctor at our GP's surgery to say that he had sorted out a prescription for steroids to help improve Steve's appetite and boost his energy.  

I collected the prescription during the morning and Steve took his first dose at lunchtime - six x 5mg tablets a day of Prednisolone, a highly potent glucocorticoid steroid used in the treatment of a variety of illnesses.  

He's on a two week course to give him a boost, then will be weaned off gradually as abrupt withdrawal can cause serious problems. Long term use can result in side effects which outweigh the benefits so this is only a short term fix.  But, oh boy.....It kicks in quickly!  

How much of it is the drug and how much is psychosomatic, we don't know.  But in the last 24 hours his appetite has improved, he has felt hungry and eaten just about normally. No gagging as he swallows, or coughing up bits of foods stuck in his throat which has been a problem recently. Whether it will help him gain weight is another matter.  We shall monitor. The baseline weight taken yesterday (9.10.15) is 54.8 kilos/8 st 6 lbs (fully clothed).  

However, although he says he's a bit dozy this morning, in general, he looks and feels brighter too!  So much so that he has decided to reduce the dose by one tablet a day so that he doesn't go completely hyper, and take the medication in the morning so that it doesn't keep him awake at night.  

What a difference a day makes....

There has also been progress on probate relating to Steve's mum's will.  The "estate accounts" are done, forms signed and dated and will be delivered by hand to the Probate Registry here in Oxford on Monday.  

One of the so-called liabilities on the estate is a bill from Aabletone Nursing Home in Bristol where Jean died in September, on a Sunday evening.  But because the family didn't collect her belongings until Monday morning, we have been billed for the whole week.  That's £578.00 for two black bin liners, less than a couple of hours in the room to pack away her belongings, and not being able to tell us where her body had been taken.  We had to go hunting ourselves via the nearest funeral directors.  I kid you not!

What a difference a (half) day makes.....  

Wednesday 7 October 2015

Waiting, news, action and more waiting

After my last post, we were waiting on tenterhooks for what seemed like forever to hear whether Steve could have a stent inserted to keep his airway open and when the course of radiotherapy would take place.  

In the end, the waiting got too much for Steve and he contacted the hospital for news.  When it came, it was a mix of good news and not-so-good news.  

The bad news is that the restriction on his windpipe caused by tumour growth is too deep to insert a stent which we were banking on to keep the airway open to his lower left lung. The good news is that radiotherapy to shrink the tumour causing the airway restriction has now been arranged. The planning session was this morning and the treatment sessions will start next week.  

The radiotherapy people confirmed that there should not be a problem if Steve takes steroids during treatment, so we are hoping to get a prescription sorted out sooner rather than later.  Steroids should help stimulate his appetite which is very poor at the moment, so that he can take on board more calories, stem the weight loss and have a bit more energy.

Steve was also given some tips on how to cut through the phlegm which he has problems coughing up - gut-rotting coca cola helps, it seems!  Also salt water or aspirin gargles should help if his throat gets painful as a result of treatment.  Plus the usual advice on keeping up the calorie intake - full fat milk and yoghurt, creamy butter, protein drinks, Danish pastries and donuts, nuts, soups with cream if swallowing solid food is difficult.  The Nutribullet will be working overtime, I think....

So....After this morning's action, we are now back to waiting. Waiting for the first radiotherapy session....Waiting for the Blue Badge to be renewed....Waiting to hear whether he will get Attendance Allowance....Waiting for progress on probate on his mum's will....

In the meantime, life goes on albeit at a much slower pace. Although we missed the Mesothelioma Patient and Carer Day, we did manage to meet up with Sue, a friend from our student days, who treated us for lunch (soup as it happens) at Worton Organic Garden - not so far away from us, but not somewhere we had heard about or visited before.  Thank you Sue - lovely to meet up with you again!

I am in the process of finishing my work commitments. Our son is visiting to see if he can help us progress the last few outstanding garden projects. Steve is talking about designing this year's Christmas card (we didn't send them last year as he was very poorly and told he only had a small number of months to live).  We have a photography day booked soon at the local Hawk Conservatory (hopefully the birds will fly to us, rather than Steve have to walk to them)....There are occasional references to wheelchair hire, but Steve isn't quite ready for that yet.  

When his energy levels improve, we hope to see more friends. But he's not feeling very sociable at the moment (who wants to talk about disease progression, after all?) so the emphasis is on taking it easy for the time being.  

So....Easy does it.