Monday 11 November 2013

Progressing the "to do" list, a couple of treats and some very important advice

Although knocked sideways by Tuesday's sad news about Australian meso warrior Steve Cook, we've managed to make some progress on the mundane "to do" list over the last week.  Not very exciting but it has to be done....

I donated blood for the first time in almost 12 months, as we've not been around for sessions held earlier in the year. The old camp beds have been replaced by moulded plastic chairs which tilt back to put you at the best angle to get the blood flowing.  A bit like sitting in a giant baby car seat....

The new mattress was delivered; LED lights fixed behind the bed head/storage screen and mirrors attached to the inside of the wardrobe door - at long last the guest bedroom is properly finished, ready for our staying visitors...

The mountain of ironing has shrunk to a molehill; the last of the summer clothes packed away and winter woolies pulled out - we are as ready as we'll ever be for whatever the weather throws at us...

The Oxford Photographic Society Annual Exhibition finished on Friday; framed prints have been collected and stored away; new prints prepared and artist statement written for the next exhibition which opens in January at the Link Gallery, John Radcliffe Hospital here in Oxford....

I attended the local Cancer Services Patient and Carers meeting to discuss the results of the National Cancer Patient Experience Survey 2012/13. Mesothelioma is not listed as a separate cancer in its own right, but is lumped in with lung cancer even though it can occur elsewhere in the body. Consequently, it's impossible to pull out any useful information specific to meso - what a pity....

...However, one item caught my eye.  All cancer patient are supposed to be offered a written care plan.  This should reflect a holistic approach to care, encompassing not only a treatment plan but any other matters affecting the individual concerned including, for example, emotional trauma; financial concerns; advice about diet, exercise, suitable complementary therapies; right down to things like who will look after the dog/cat/budgie if I can't?  

I don't recall Steve ever being offered such a care plan.  In fact, I'm not even sure who is our key worker/clinical nurse specialist to ask about such a plan - and I thought we were on the ball when it comes to Steve's cancer.  It would appear not.....

Our reward for progressing the mundane stuff was a trip to the cinema to see "Gravity" in 3D - put on the 3D specs and I defy you not to duck and dive as things leap out of the screen at you!  

We also treated ourselves to a couple of tickets to see Bristol Rugby play London Welsh at the Kassam Stadium, home of Oxford United FC.  Not so much of a treat as we hoped, as Bristol (Steve's team) didn't exactly cover themselves in glory.  Still, the sun shone and we didn't freeze which is what usually happens on those rare occasions when we watch ruby live....




It was also very moving to stand in a crowd of 1800 or so during the two minutes silence for Remberence Sunday...

Unfortunately, a close encounter with a high kerb in the scrum to get out of the car park at the end of the match has left the car's exhaust sounding rather loud.  Another job to add to this week's much longer "to do" list....

It's not just the car that's playing up.  Steve's knee and my lower back have been causing us problems, so we've had to resort to paracetamol and ibuprofen gel to keep us going. On top of that, I've come down with a nasty cold.  

Still, at least we have been able to get on and do a few things, unlike those meso warriors going through tough times. Sending you all a big hug x 

Last but not least, thanks to IATP (Independent Asbestos Training Advisors) for sending us a supply of the "Take 5 and Stay Alive" leaflet produced by the British Lung Foundation. Go to website by clicking HERE and watch the video.  It's only 30 seconds long.  You can spare that amount of time.  Do it NOW please....it might save your life, or the life of someone you love...








2 comments:

  1. Linda,
    Is this written care plan specific to Oxford as I have never heard of it either.
    Hope the back pain is sorted soon, I am off to give blood in a couple of weeks so look forward to the giant baby seat

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    Replies
    1. Amanda - apparently offering a cancer patient a written care plan is a national requirement - one which PCTs are assessed against in the annual National Cancer Survey. Our local PCT does not score well on this criterion. I will follow up once I discover who is supposed to offer to write a care plan...Not sure if its the GP, hospital multidisciplinary team, Macmillan nurse or what!

      Hope things are getting a bit better as Ray moves further into this cycle of treatment.

      Take care of yourself too!

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