Thursday, 7 January 2016

and into 2016 we go......

If you had told me this time last year that Steve would still be here to see in the start of 2016, I would have found it hard to believe given the doctor's prediction that his life expectancy was a small number of months.  But thirteen months on and he's still alive and kicking (although the latter is more metaphorical than actual, given the impact of physical exertion on him....)  

So here is our benchmark post for the start of 2016 - something we can use to monitor Steve's progress over the course of the new year.  I know this will make difficult reading for many of you, but take comfort from the fact that he's still here and not in pain, and enjoying life albeit in a more restrained way than earlier in his diagnosis when he was looping the loop in a Chipmunk plane and travelling to Marrakesh and other exciting destinations at home and abroad.

Appetite, weight and swallowing

The second course of steroids in the run up to Christmas did its job.  Steve's appetite improved and he enjoyed most of his food, although he continues to have problems swallowing some hard food, even small bits well chewed.  But he's now in the steroid "tapering off" period, so we'll need to keep an eye on his food intake and weight.  He continued to loose weight slowly during December - down from 50.5 kilos at the start of the month to 50 kilos on 27 December, but had put on a whole kilo by 3 January, no doubt helped by good festive food, drink and chocolate.  I dread to think how much weight I have gained over that period....

Energy, activity, coughing and pressure sores

Steve continues to find physical exertion difficult.  The simple act of getting up, dressed and downstairs leaves him in need of a rest.  Moving around makes him cough which tires him even more, which is why he spends a lot of time doing things whilst sitting down, causing pressure sores as he has so little flesh to cushion the boney bits.  However, the sores are healing with regular bathing, lashings of derma cream, pressure relief plasters and an inflatable back cushion.  The district nurse is happy and her notes say "wife managing well" so I'm happy. He still declines to use a wheelchair, but it will be there when he does need it. 

Lumps and bumps

The lump on Steve's chest where the cancer has grown through the chest wall has now grown up as far as his shoulder and reached his right armpit.  He lost sensation in his right hand yesterday for a short while, which was a bit alarming.  Whether that was simply because he was sitting awkwardly or whether it was related to the lump pressing on a nerve, we don't know. 

He now talks about "bumping along the bottom" and there are an increasing number of down times when we both shed a tear because the future looks bleak.  And then something lovely happens (often a random act of kindness) and we pick ourselves up, dust ourselves down and start over...

Hospitals and treatment

Today was the first hospital visit of 2016. After discussing how he felt, Dr P examined Steve and agreed that the time had come to have another go at zapping the chest lump again (the last round of radiotherapy on this area was just over a year ago).  She is concerned that if the lump gets much bigger, it could affect nerves and cause pain (not something Steve has to deal with at the moment).  

Last time round, the radiotherapy dealt the lump a glancing blow across the surface.  This time however, the beam would be pointing through the body and is like to have more noticeable side effects including affecting his gullet.  At this point in the conversation, Steve mentioned the problems he has swallowing hard food at times.  As a result, Doctor P wants Steve to have another scan to see what's causing this problem, as it might be enlarged central lymph glands pressing on his food pipe. She can still zap the chest lump with radiotherapy but needs to see the scan results before planning treatment, I assume to minimise the risk of exacerbating the swallowing problem.  

We have an appointment to see her again in three weeks time.  Hopefully Steve will have had a scan in the intervening period, the results will be available and we can take it from there.

Hopes and fears

In truth, we are feeling a bit scared now...not very confident about what the future holds, what will happen when and how we will deal with it.  Many people reading this will know exactly what we're going through.  For others, it may be the first time you are experiencing second-hand the outcome of breathing in asbestos fibres many decades ago and how the resulting mesothelioma affects not just the life of the victim, but their family and friends too.  I hope you will still be there to hold our hands in this journey xx

And doing something positive!

On the bright side, great advances are being made in cancer research, including very encouraging results from an immunotherapy drug called Keytruda which is having an amazing effect on fellow bloggers Mavis in the UK and Lou in Australia.  It may not help Steve, but no doubt it will help others in the future.  

On the physical action front, our son Jack is cycling a mountain stage of the Tour  de France (L'Etape) in July to raise money for Mesothelioma UK, a charity which supports all those with this disease and their families.  

Jack cycling the Dragon ride June 2015

Mountains, mountains and more mountains in L'Etape du Tour 

If you can sponsor him - even a little - that would be great!  Here is a link to his Just Giving Page.  

Lastly, many, many thanks to those of you who have already sponsored him.  You are wonderful people!  

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