monday: 7-day heart monitor

Next morning and the shower is tricky.  I have to wash/shower in such a way that I don’t get the pads attached to my body wet.  There’s one each side near my armpits, so an extra layer of under-arm deodorant will have to suffice for today until I can work out how to wash under my arms without soaking the pads.  In the worse case I have a few spare pads, but I don’t want to start replacing those during the early morning rush.

Once disconnected the monitor chirps like a hungry chick waiting for its mother.  By the time I get out of the shower it’s silent; I check the display to make sure I haven’t killed it. Annie has already left for work.  She helped me disconnect the electrodes – but it didn’t occur to me that I might need help reconnecting them.  I need my glasses and the mirror; I eventually manage it, remembering to get the colours the right way round.

I’m given a diary to record any unusual events or activities that might explain any change in heart rate or rhythm.  It’s the final week of the Tour de France and I’m expecting a spike around 4.30pm on Sunday afternoon.

tuesday: lung function test

If you’ve read the post dated 4^th May 2010 (Knock and take a seat) you’ll know the drill.  The only difference this time is that I’m in a glass booth/shower cubicle and I can’t see the computer screen.  The blowing and sucking are more or less the same.

And I’m convinced that all clinical physiologists attend the same ‘how to encourage your patient’ course.  I keep expecting to get a sweetie if I do really well.  Which I don’t particularly.  It seems much harder this time.  As I do the forced exhale I can feel my stomach churning.  He keeps shouting me on, but there is nothing more to come.  I am spent.

Then the usual questions; do you smoke? Have you ever smoked? Been exposed to asbestos?  Chronic bronchitis?  Heart attack?  I answer ‘no’ to every single question.  Given the coughing outside in the waiting room, that’s probably a first.  He’s a little puzzled; I explain about the lung surgery and radiotherapy, which were not in his notes.  He wishes me luck; “the results will be with your consultant on Thursday”.

thursday: thoracic consultant

“What would you like to hear?”                                                                                              “That the cancer has not returned”.                                                                                      “There is no evidence to suggest that the cancer has returned”. 

I look at Annie.  She wants to cry.  “There is evidence of scaring on the lungs (I know, I can hear it at night) but it is most likely caused by the Radiotherapy”.  Smiles all round.  He is as pleased as us and seems relieved at not having to break bad news.   Fibrosis now seems like a walk in the park.

Pulmonary Fibrosis is a progressive disease; “it will not get better, the best we can hope is that it will stabilise.”   Annie asks what we can do to stop it progressing; “Exercise”.  Other ways to put the brakes on include a good balanced diet (√), not smoking (√) and a flu jab each year.  Oh and stay away from people with colds and chest infections.  Annie asks if there is any limit on what I can do – I’m concerned at this because there’s a mad glint in her eye.  He smiles and answers “No …”.  I see a cloud above her head – press-ups, squats and unspeakable practices involving a ‘balance ball’.  It’s a little known fact that modern exercise routines were actually invented during the Spanish Inquisition. “…. but listen to your body”.

He talks us through the results of the lung function tests.  It’s all very complicated and he reduces it to three numbers, or rather, percentages.  A normal healthy adult would expect to score more than 85%.  I scored 60%, which is the same as someone with moderate pulmonary disease.  This is due to the combined effects of surgery and radiotherapy.  He crunches the numbers again to take account of the missing section of lung and comes up with a score of 80% (a result expected of someone with mild pulmonary disease).  The difference then, between that figure and ‘normal’, is down to radiotherapy.  I wonder, for a moment, if I should have opted for chemotherapy instead.  But it was not on offer.

He declines to prescribe steroids, which is the most common treatment because I’m reasonably fit and healthy compared with most people he sees and the side effects can be unpleasant.  I’m relieved – we’ll do it the natural way.  It’s only when we’re in the car that I think of other questions to ask; like why was there a difference between the February and April X-rays?  What does it mean?

It’s been a pretty grim four weeks.   It’s been particularly tough on Annie worrying about me and her youngest, Dan, as he returns from his 6-month pub-crawl trek around South East Asia.  She keeps smiling.   We get through it.

There’s that old saying –‘what doesn’t kill us makes us stronger’ – but, I have to ask, what for exactly?