Wednesday 16 September 2009

Three months and a lifetime Cycle 3, Day 15

Time is elastic. It's three months to the day since Steve was diagnosed with mesothelioma - not a long time in terms of hours and days, but for us it feels like a life time.  So, where are we in this new era?

The treatment
Steve is halfway through his course of six cycles of chemotherapy on the Cisplatin/Velcade drug trail.  The review at the end of Cycle 2 showed Leo the tumour to be stable - not larger, but not significantly smaller either.  The next review will be at the end of Cycle 4 in early October.  If all goes to plan, treatment will be completed by late November.  However, we know from experience that things do not always go to plan, so we shall see...

The body
Although Steve had lost weight prior to diagnosis, he's regained some and has remained stable since chemo started.  He has no pain, although is sometimes aware of his chest - the chemo working we hope, rather than Leo flexing his muscles.  Steve's breathing is good - he can get a little breathless after major exertion (walking a long distance, or fast, or on steep gradients) but not enough to stop him being active. 

He has not needed to take advantage of the mobility support facilities at the places we have visited over the last few months. In fact, when requested, he recently gave up his "priority" seat on a bus to a large lady with obvious walking difficulties.  You can't tell simply by looking at him that he has a terminal illness.  However, it has made us more aware of how deceptive appearances can be (you really can't tell what's going on inside)

The side effects of chemo - primarily fatigue and nausea - are not pleasant and do impact on us quite noticeably during the fortnight when Steve receives treatment.  Things ease off a little in the third week of the 21 day cycle, so that's when we are at our most sociable.  Apologies if that means we haven't got round to seeing you yet.  We will.

Mind and emotions
The overwhelming feelings of anger, grief, fear and helplessness we felt initially on diagnosis are still there and surface from time to time.  But these feelings are now overlaid by a determination to be positive, stay active and make the most of things.  

The regime of frequent hospital visits is a double-edged sword - on the one hand, we are often frustrated by the both the time taken up and the side effects of the chemo, which impact on what we can do whilst treatment is in progress.  On the other hand, it's reassuring to know that action is being taken which should help improve Steve's quality of life and life expectancy compared to what he could expect with no treatment.  

That said, in "rest" weeks when there are no hospital visits and the side effects of chemo reduce, the fact that Steve has an incurable cancer can feel almost unreal.  At such times, I occasionally wonder whether the diagnosis was correct - then quickly put such thoughts out of my mind as wishful thinking, which won't help either of us.

I know that Steve's experience may not be typical, but after the initial slog of filling in forms, we have both been favourably impressed by the speed with which allowances and financial benefits have been put in place.  It is also reassuring to know that other financial and related help is available if/when we need it. Let's hope that time is a long way off...

Although hospital visits have not always gone off without a hitch, Steve's medical team is great.  Friendly, patient, ready to answer our questions and informative.  

The support given by family and friends, as well as people we have come into contact with through the blog or other websites have been wonderful.  I really don't know what we would have done without you.  Thank you, again and again.

Random thoughts about the future 
When I started the blog, I couldn't think about the future - it was just a gaping black hole of nothingness, a pit of unfulfilled dreams and an overwhelming sense of loss of things that might have been.  

However, I find myself looking forward now - not at the far distant horizon, but to things in the foreseeable future: what we might do in Steve's next "rest week"; the results of the next treatment review; enjoying the autumn; social events we have been invited to; the end of chemotherapy later this year; Christmas 2009 and the new year 2010, when I will adjust the work-life balance so we can spend more time together to enjoy the little things as well as the more important occasions, including Steve's birthday and Jack's half marathon in March, and our anniversary and Katie's 21st birthday in May.  

In the meantime, it's not always easy to be positive. However, we try never to give up hope and to make the most of each day, like many others trying to do the same.  

If you have a spare 8-9 minutes, please watch the You Tube video 
Mesothelioma:  The human face of an asbestos epidemic (link top right).  
But take a deep breath first.  
Then spread the word.  
Thank you.

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