I have tried hard this week to get my head out of bowel
transplant mode and in to the space reserved for “rest of my life.” I
just figured that with my head still spinning with so many things it was time
for a mental clear out, a kind of spring clean of the mind. As I write this I
have visions of a mini me with duster and polish sitting inside my head
polishing lots of bits until they are all shiny. Just hope mini me doesn’t drop
anything, that is if there is anything to actually drop.
Growing up with Crohn’s
Disease there was always a degree of tinkering with my ongoing
treatment however when it came to my bowel transplant my biggest concerns have
been the major issues that need continual monitoring. Now though I am back in
that tinkering phase which looking at the big picture is great but it is the
daily issues that make the difference between really getting on with life and
constantly remembering you have issues that need to be addressed. Right now
aside from the nausea my bacterial
overgrowth issues have come back so it is a case of back on the
antibiotics and then an increased dosage of my probiotics that I bolus in
through the mic
key button in my stomach.
My biggest frustration though has been a reoccurrence of
joint pains. To be honest I initially put it down to old age, hey I am 43 and
going grey so it was a logical conclusion I mean even people with very similar physiques
to me such as Tom Cruise, George Clooney et al must have grey flecks in their
hair and the odd aching limb. My problem has been that the pain has spread to
my lower back, finger joints and bizarrely the sole of my right foot. Prior to
transplant I had a bone
density scan which showed that I was more susceptible to joint problems
so I have had bloods re done and a vitamin D injection before deciding what to
do next. Boy did the injection hurt though, so thick and gloopy my arm is still
sore – stop moaning I hear you shout! I think the answer is very simple, go
live in a warmer climate. I wish I did but I don’t so again I hear one part of
the brain shouting “stop moaning.” Actually from the age of 14 my surgeons have
said you would benefit from being in a warm climate but did I listen – not, do
I wish I did? Of course…
Exploring the reserved area marked rest of my life has seen
this week being huge fun. I have actually got lots to tell you. You know that
my biggest passion is ensuring that the patient voice is truly heard and that
we are not simply a tick box on a marketing slide called “patient centeredness.”
Well this week saw our Campaign For Better Hospital
Food really take off. A report came out stating that over £55 million
had been spent in voluntary initiatives all of which have failed to improve the
standard of hospital food served to patients. In fact it is at an all time low.
As the news hit the media so I received a call from the BBC to do an interview
for the breakfast news slot and I had the pleasure of the film crew at my home
on Wednesday. I assumed that was the end of it until on Thursday early evening
I received a call from Sky news to go to their studios and be live on air on
Friday morning. If I am honest I was as nervous as anything but it was good fun
and I think it went well. After doing a couple more live radio interviews I sat
back on Friday night really proud that I had been able to make a positive
contribution to change. How can omelettes made from powdered egg that are
cooked, frozen and then reheated be acceptable to serve patients? Or soup
fortified with powdered milk and no fresh vegetables. Oh I could rant for ever
but you get my drift. I will be putting
up links to this media soon for you all to laugh at!!
That was a great ending to the week but on Wednesday night I
did encounter my first “in your face” case of ignorance from a healthcare professional
to a patient. I am incredibly privileged to be the patient lead on #nhssm which
hosts a weekly tweetchat on various topical issues within NHS. On talking about
how social media can be a great learning tool I made reference to the fact that
patient blogs are a great way for health professionals to learn things. I was
then told that I should go back to using social media to “to follow celebrities.”
Oh such ignorance. Once I calmed down and then realised that none of my tweets
were then being responded to by pretty much all the health care professionals
on that specific chat it just made me realise how far patients still have to go
to truly be treated on an equal footing. By hey it has just made me even more
determined to have our voice heard.
I mentioned this to one of the most highly qualified
e-patients in the world Regina Holliday. If you
ever get to hear her speak you are in for a real treat. Her response to my
frustration was to say “suffering is a great teacher and many others are unschooled….”
The day after this chat I was back at Oxford going through
with my surgeon all the things I mentioned at the start of this post. In his
room he has a poster on the wall that I have seen many times but never taken
any real notice of until this time. This is that poster.
To me this sums everything about my journey so far and
everything about the rest of my journey.
Till next time
x
