Friday 11 January 2013

Fragile - Handle with care

This morning's mesothelioma google alert included a link to a blog on "Maggies" website (if you live outside the UK, Maggies is a charity which helps people affected by cancer).  

The blogger's partner had been diagnosed with mesothelioma recently and she is going through the whole gamut of emotions from crying in secret to getting very angry, which is so familiar to those of us who have found ourselves in a similar situation.

The anonymous poster commented on how, after the initial shock of hearing that someone has been diagnosed with a terminal illness, friends go back to being "normal".  She goes on it say how difficult she found it going back to work to cries of "Happy New Year" when all she felt like doing was screaming "Can't you understand, my life has turned on its axis....." 

I remember those feelings so well.  They never really go away, just get overlaid with other things - memories of happy times; support from friends; empathy from those who understand how you feel because they are going through or have been through the same thing.  Such things help you get past the bad times and appreciate the good times.

People sometimes remark on how positive we are when dealing with this awful disease and want to know how we manage to do it.  I honestly don't know.  The emotional investment is enormous.  It takes its toll on both the carer and the cared for. 

Believe me, there are times when it's really, really hard. You crave a strong, healthy shoulder to cry on; someone to make it better with a kiss and cuddle like your mum used to do when you were a child; wave a magic wand and make it all go away.  If only.....

Outwardly, we may appear calm and in control.  However, in my case at least, it's a very thin veneer.  The pent up emotions are there, bubbling way just beneath the surface. It only takes a small trigger to set me off - something as innocent as a kind word from a stranger, or words from someone closer who probably doesn't mean to sound harsh but simply says the wrong thing, in the wrong way or at the wrong time - forgetting, or not realising, just how vulnerable you are. 

In a similar vein, to look at Steve, you would never know that he has an incurable cancer. He doesn't appear to be ill, at least not most of the time.  However, if you saw him as I do, bent over with his head in his hands fighting nausea, or dropping off to sleep at odd times throughout the day like someone has flipped a light switch, you would soon realize that appearances can be deceptive.  

He doesn't act like a victim, or make a big fuss about having mesothelioma.  If it wasn't for this blog, only our family and closest friends would know what he is going through, and then probably only in very general terms.  I have no idea where he gets his inner strength and courage from.

Because of how he is, I sometimes think that people forget what he's actually going through. They appear to assume he can carry on as usual and is able to handle everything they throw at him, even during these last few months as slowly but surely, he grinds his way through a grueling six cycles of chemotherapy.  He will get there, but needs a bit of extra space and time at the moment.

On such occasions, I wonder whether we should wear big labels stuck to our foreheads saying "FRAGILE - Handle with care" to remind people that whilest we may appear positive, there are often times when you need to handle us with kid gloves to avoid bruising or breakage.  

You can probably tell from today's blog that we have hit a rough patch this week.  It happens from time to time. Putting it into words is just my way of dealing with it.  

This morning, Steve took his last antiemetic steroid tablet of this chemo cycle.  It takes a while for his body to adjust to coming off these meds, so we are not out of the woods yet. However, all being well, he will start feeling the benefits of Tuesday's blood transfusion very soon and his energy levels will start going up again.  When he goes up, so will I....  

Here's to feeling positive again in the near future.  


  1. Everything you say is sopainfully resonant.
    Reading about Steve's journey and how it impacts on you both is something that will never leave me .
    But we were always inspired by your strength and determination to live life and it so helped us .
    I wish you both well and send love x

  2. You have expressed so well the sentiments of many who care for those loved ones with mesothelioma. Appearances are only a glimpse of the unseen! Thinking of you both as I have over the years and especially now as you end the chemo journey to stability... We are still on the clinical trial journey which is much less harsher than chemo, although It's still hard emotionally to face the chemo treatment unit bi-monthly. Wishing you all the best for 2013. Marg