Tuesday 12 March 2013

Getting back up to speed, slowly

We really enjoyed sharing the good news last week that Steve has responded positively to treatment after six cycles of chemotherapy (Alimta/pemetrexed and carboplatin). 

We've also been touched by all the wonderful messages sent back to us - so sorry that we've been unable to respond to everyone individually, but thank you, thank you, thank you for your thoughts and support!

The celebrations continued at the weekend; an enjoyable, delicious lunch in Bristol with nephew Nick, his partner Kate and lovely 3 year old daughter Esme, then on to tell the good news to Steve's mum in her care home.  She's profoundly deaf so we couldn't tell her over the phone!  

It was good to see her again as our visits were few and far between while Steve was having treatment. Good timing too - perfect opportunity to deliver a Mothers Day card and flowers!

I was back in the hospital again yesterday, but this time on my own.  Inspired by fellow blogger Mavis, I had contacted the Oxford University Hospitals Cancer Services about joining the Patent and Carer Panel.  Yesterday was the first opportunity to attend a meeting.  Various matters discussed, from hospital food (cooked in Wales and transported chilled by lorry to Oxford every day!) to the perennial problems of car parking at the hospital.....

One of the most interesting things from my perspective was a patient's complaint that he saw a different doctor every time he visited hospital so always had to start afresh at every assessment - a concern which I echoed.  I'm sure that most patients would prefer to see the same one (or two) doctors on every visit and build up a relationship over a period of time.  

There's a lot to be said for continuity of care which allows a patient and doctor to get to know each other.  At least that way, the doctor should be up to speed with the patient's history and treatment stage without having to refer extensively to file notes at the start of the consultation, which doesn't instill you with confidence that they are on your case!

A doctor who becomes familiar with the person (not just the patient) in his or her care should also be able to spot any obvious changes in their physical appearance and/or demeanor which might be indicative of a deterioration or improvement in health since the previous assessment.  

Regular contact must also help build trust and confidence between doctor and patient, which is not so easy when talking to a complete stranger about matters of life and death and all things in between...

...The benefits of continuity of care all seems so obvious when viewed from the perspective of a patent or carer.  No doubt, someone from the medical profession will now tell me why it doesn't (or can't) happen like that....

Another meso-related matter this afternoon - this time a phone discussion with Jo from the British Lung Foundation as an adjunct to the BLF's current mesothelioma survey.  If you are affected by this disease and haven't completed the questionnaire already, you can do it online by clicking here  

After being hermits for so long, we are finding it a bit of a challenge to get back up to speed in oder to make the most of the three months before the next assessment in June. The freezing cold, biting wind and occasional snow showers aren't very conducive to being outdoors, especially with a compromised lung, so it's easier to sit tight at the moment rather than get out and about.  

However, there are a few sociable things pencilled in on the horizon to look forward to in the coming weeks and no doubt the calendar will start to fill up quickly now we are able to make plans for the next three months.  In the meantime, we are enjoying looking at Jack's photographs of a sunny New Zealand on Facebook and are looking forward to seeing the progress on Katie and Ed's new flat in London next weekend.

Perhaps we will be able to get back to photography soon. I do hope so. I think we are in dire need of a bit of creativity to get the life juices flowing...However, I was delighted when a business in Germany contacted me to say they wanted to display one of my photos in their reception...the same one that appeared in the Guardian Weekend magazine a few months back.  So if you ever go to the offices of OOSE Innovative Informatik in Hamburg, give me a report back on how it looks!

Last but not least, congratulations to fellow blogger Jan on the publication of her novel; cheers to Amanda and Ray and Mavis whose conditions remain stable, and hugs to Debbie, Tess and all the Meso Warriors who are having a tough time at the moment - sending positive thoughts to you x

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