In the past few
posts I’ve mentioned some of the recent shenanigans I’ve had with my local
hospital. I bet you thought I was going
to spare you the details didn’t you?
Well you were wrong. It’s just
that up until now I haven’t had the heart to put the saga into writing. But unluckily for you I have splurged it all
out below.
I had intended to reward anyone who was prepared to read through all the blah, blah, blah with a picture right at the end, of a pony that looks like one of The Beatles. Unfortunately I can't seem to add photos today. No idea why. Just another thing to moan about.
Talking about moaning, here we go.
Back in March I rang the specialist
nurse at the hospital complaining of breathlessness on exertion. I was told, without being seen, not to worry
as it was probably just a knock-on effect from chemo last year and the surgery
I had in February. A somewhat cavalier
approach I felt seeing as it’s already known that the cancer has spread into my
lungs, but I (stupidly) didn't stamp my feet and demand to be seen.
In early April I was
in the Chemo Unit for one of my regular three-weekly Herceptin top-ups. I told them about the breathlessness and, as a result, had
a blood test, chest x-ray and CT scan to check that I didn’t have any blood
clots (I didn’t).
Later that month I went to my GP surgery to ask about the breathlessness. My GP told me that the CT scan, taken three
weeks earlier, had shown progression in my lung mets (or, in other words, the
lung crap was growing).
I was furious that
the Oncology Dept hadn’t picked up on this progression (I know ‘progression’ sounds
good, but in the wacky, wacky world of cancer it is a Very Bad Thing). I assume
this happened because this wasn’t one of the regular, planned CT scans that I
have. But that’s no excuse. To be told that the cancer was growing three
weeks after the scan, and only because I happened to go to my GP, is, at the
risk of sounding like a disgruntled retired colonel with a handle-bar
moustache, a complete bloody disgrace. Not
to mention scary.
I made an
appointment to see the oncologist the following day – and believe me I had to
jump through hoops to get that appointment.
He was bloody useless. No
apology, no ‘OK let’s get things moving then’, nothing. He just told me I had to wait until the
following week for a full CT scan (to check for spread to other organs) and
then a further two weeks (two weeks!) to get the results. He said it was impossible to speed up the
scan and/or results.
A couple of days
later I had a routine appointment with the breast surgeon. I told her the whole sorry story and she said
she would make sure I was discussed at the Breast Clinic/Oncology meeting the
following day. After that I had two
calls from Oncology (I have never had
a phone call from the Oncology Dept before, so colour me cynical). During the first call the oncologist suggested that I call the CT Dept to ask them to come
up with results more quickly (why he
couldn’t do that is beyond me) he also mentioned the possibility of going on a
drug trial (TDM1). The second call, half an
hour later, was to tell me that the drug trial was closed.
At this stage I was
beside myself with fear, frustration and fury.
There was a real danger that my head would explode before I even got the
chance to die of cancer. However, I was
very, very lucky to be in the position to be able to go to a Professor of
Oncology in London for a private consultation including a CT scan and results
in the same day.
The CT scan revealed
that there had been progression in my lungs, hence the breathlessness, but no
spread to other organs. The Prof explained
that the trial for TDM1 was only closed temporarily and should be re-opening
soon. He felt I would be a good
candidate for the trial and recommended that I see a colleague of his, on the
NHS, in Warwick.
The following week I
was informed by the London oncologist’s office
that the necessary letters had been ‘done’ and I should hear from Warwick shortly.
A week later I still
hadn’t heard from Warwick so I contacted the London oncologist’s
office again. This is when I found out
that letters being ‘done’ meant dictated, not sent and, in fact, not even typed
yet. So it’s not just the NHS that drag their heels.
The following day
the letters were sent out (to Warwick,
to my GP and to my local oncology dept).
Copies were emailed to me. They
made my jaw drop. The letters while
stating that I would be a good candidate for the trial and correctly detailing
my medical history, said that the Prof recommended that, before going to Warwick, I go back and
discuss things with my local hospital.
Neither I nor the other-half remember this being mentioned during the
consultation. Also, the letter sent to Warwick, was not asking
that an appointment be made for me there, it was really just alerting them to
my existence should I contact them. So I
had wasted yet more time waiting for things that weren’t going to happen.
It so happened that,
last Thursday, I had an appointment (made some time ago) with the local
oncology dept anyway. So I decided to
attend (having first notified them that I was very unhappy with my treatment
and wanted to see the oncology boss). If
nothing else it would give me the opportunity to vent my spleen.
The boss was an oily
rat bag of the first order. He squirmed, smarmed and excused his way through the appointment. I did manage to get one ‘sorry’ out of him – but that took some considerable effort on my part. He claimed to be best pals with the London oncologist (the London onc having told me that they had met
once or twice) and generally, it seemed to me, tried to salve his ego while not
putting his hands up to any real failure in his department.
However, he did say
that the drug trial was indeed still on and that if I decided to keep my care
at Shrewsbury rather than transfer to Warwick he would
recommend me.
The other-half and I
went home, ranted to each other about the oily rat bag, and then did some
serious, pragmatic thinking. While we’d
love to tell the local oncologists to stick it where the sun don’t shine the
reality is that to wait for an appointment at Warwick and then have to travel an hour and a
half each way for every appointment was not an appealing prospect. So, warily, I have asked to go ahead with
continuing my treatment locally.
I’ve just about
finished my tirade now. Please make
sympathetic noises at this point.
Breaking news: Yesterday I received a call from the local hospital
confirming that, subject to tests, I have been allocated a place on the trial
starting, hopefully, next month. There is still a danger I won’t get on the trial and even if I do, no guarantee
that it will work. However, that said,
it does (at last) feel like good news.
If you've read all this without slipping into a coma, congratulations, have a banana! I'll do my best to fix the putting-photos-on-this-blog problem and show you the Beatle pony next time.