Brace yourselves

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.