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.

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 

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!

zapped....

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

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.....  

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.

Leo is being obstructive

Those of you who have read the blog from the early days will know about "Leo".  Inspired by other meso warriors, it's the name Steve gave to his cancer in 2009, not long after he was diagnosed with mesothelioma in the lining of his right lung.  

Leo has been sleeping quietly for much of the time since then (albeit we have been reminded of his presence every three months or so when hospital assessment dates come around). For sure, there have been difficult times when Steve has had treatment - chemotherapy and drug trials - with nasty side effects.  However, the cancer itself had no direct, significant physical impact on Steve's day-to-day life for some five years. It almost seemed like tempting fate to keep referring to Leo during this period, so I haven't mentioned him by name very often in recent years....

However, Leo has reared his ugly head quite spectacularly over the last twelve months or so, and we can't pretend to ignore him any longer.  He's spread himself around a bit, making unwelcome appearances in Steve's liver and spine, invading the left lung, growing in the right lung, tunnelling through the chest wall and squeezing through Steve's ribcage, popping a rib in the process and causing the first real pain directly related to the cancer.  

A course of radiotherapy last December shrank Leo's visible presence a bit, but the lump on Steve's chest started growing again in August.  Consequently, at his hospital appointment on Thursday, Steve was expecting to discuss a further course of radiotherapy aimed at the external lump. However, Dr P (the medical oncologist) was not concerned about the visible chest lump - it's not causing pain, affecting movement or near any vital organs.  

She was worried however about a tumour nodule in his left lung which is severely constricting the air passage to the lower lung lobe.  Although the passage is still open sufficiently for air to get through at present, there is a concern that any further growth could close it off completely causing this part of his lung to collapse.  

People can, and do, live successfully with only one lung.  This is because the remaining lung expands into the space vacated by the collapsed/removed lung and increases its air capacity to compensate for the loss of the affected lung.  Which is great if your other lung is working properly.  Not so great if the capacity of your remaining lung is reduced and constricted by tumour growth, like Steve's right lung.

So...the race is on to keep the left lung airway open and make it bigger.  Dr P is hopeful that a stent can be inserted to expand the affected air passage. However, the blockage is quite deep into the lung which will make it difficult, maybe impossible, to insert a stent.  We are waiting for the specialist to advise.  Nevertheless, a further course of radiotherapy with the LINAC (Linear Accelerator) will be arranged regardless of whether a stent can be used. Five sessions over five days aimed at the nodule that's restricting air entry.  

Leo, you will soon be zapped again!

Now we wait for dates.....

Steve has taken this news remarkable well.  I think it helps him to know the reason for the problems he's been having on exertion, and he is reassured by the fact that there are treatment options to deal with the current crisis.  Of course, we don't know what's happening elsewhere in his lungs or the rest of his body.  They didn't discuss the rest of the scan report at his hospital appointment and he didn't ask for a copy to look at at home with me afterwards, on my return from a work-related trip to Guernsey.  I confess to being a little bit annoyed at the time.  However, in retrospect, perhaps not knowing the big picture in detail is a good thing, as things stand. One crisis at a time is more than enough to deal with at the moment.  No point sweating the small stuff until and unless the big issue is tackled.

So we carry on - taking each day as it comes, enjoying the early autumn sunshine and keeping our fingers crossed for England in the Rugby World Cup!