Thursday, 30 May 2013

Testing times

Since I last posted I have been zipping to and from the hospital for tests.  These tests (blood, urine, heart, bones, and a full CT scan) are mostly to determine a base line before I can start on the drug trial, although if the heart tests reveal anything iffy I won’t be allowed to start at all.

I was amazed that all the tests were arranged so quickly and was congratulating myself on having been a feisty patient who had galvanized my local hospital.  Silly me.  It turns out that the drug company behind the trial is paying for the tests to be carried out, hence the hospital’s sudden ability to move faster than a snail’s pace.  I might’ve guessed.

The tests themselves have been quite exciting.  Sis no 2 kindly said she’d take me to hospital on Monday for the blood and heart tests.  The time we arranged for her to pick me up came and went and I was left waiting forlornly by the front door like a forgotten pint of milk.  I called her and found that she had got the time of the appointment wrong and wouldn’t get to me until after I was supposed to be at the hospital.  I then had five minutes of panic while I rang for a taxi and called the hospital to warn them I’d be late.  To be fair the hospital was very accommodating and everything worked out fine. 

Well fine-ish.  As a result of all the chemo my veins are not what they were and there was a lot of poking about with needles in order to get all the blood needed for the various tests.  Things then got worse.  I was bitching about my sister to the woman carrying out the heart test when there was a knock on the door.  I was informed that my daughter was waiting outside for me.  It was, in fact, my sister and she is 12 years older than me!  This was rapidly turning into a very bad day.  However Sis no 2 and her sainted husband then treated me to lunch and took me home.  So I polished my halo and decided to forgive her.  I’m like that. 

Yesterday I had the bone scan.  This involved being injected with something radioactive (only two attempts to get the needle in this time, yay).  And yes I was weird enough to check to see if my wee glowed afterwards and no, it didn’t.

A scary thing about these tests is, of course, the possibility that they find cancer elsewhere.  The most common places for breast cancer to spread are the lungs (got the T shirt for that one), bones, liver and brain.  When I had the bone scan I had to have a second scan as the hospital bods spotted something on my ribs during the initial scan.  They did say that the something they spotted was probably just damage from surgery but I’m not going to let reassurance like that stop me from worrying.  Next week I have a CT scan which includes my head so I can start worrying about what is going on in my brain too.  No sarky comments from you lot thanks.

Anyway, if all the tests are OK I will be starting on the drug trial on 11th June.  Fingers crossed.

Stay tuned for next time when I will tell you all about the never-ending saga of the kitchen refurbishment.  Can you bear the excitement?  In the meantime have a soothing picture of Cyril, the three-legged monster cat, looking particularly relaxed.

Thursday, 23 May 2013

Mop tops and cack-hands

Pony with a Beatles hair do, don't you think?
As threatened in my last post here's the photo of a pony with a Beatles hair cut.  His name is Little Ted (he belongs to my neighbour) but I think Ringo would be better.

Now for another photo.  Prepared to be stunned.  Sis no 2 arranged for us both to go to a crochet class at a local vintage shop.  I'd really like to be one of those people (like my niece) who can take a discarded bit of material and an old crisp packet and turn them into a ball gown before you can say reverse slip stitch (whatever that is), but sadly I have no crafting ability whatsoever.  I'm sure I must have tried the teacher's patience though she didn't show it.  Well, she did say I was cack-handed, but that's just plain accurate so you can't really blame her.  Anyway here is the photo of the result of two and half hours labour (and I had a lot of help).

You're impressed aren't you?

I went back to the hospital today to sign on the dotted line, giving my consent to going on the drug trial.  Now I have to wait for a bone scan, CT scan and ECG before getting the go ahead.  Watch this space.

Tuesday, 21 May 2013

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.

Friday, 10 May 2013

The sandwich bandit

The other-half, Cyril (three-legged monster cat) and I have now been staying with sis no 1 for about six weeks as building work takes place back at Discombobulated Towers.  We are very grateful for this place of refuge but quite frankly it’s amazing we haven’t been evicted due to Cyril’s behaviour.  As well as intermittently bullying my sister’s cat, Tuppence, commandeering the best seats in the living room and demanding his share of the breakfast bacon, he has now taken up thievery.  Yesterday he got through a plastic bag and some cling film wrap to have a good nibble of my sister’s ham sandwich. As you can see from the picture below he is consumed with remorse and sleepless nights over the whole incident.

Still wearing the bandit mask too

Meanwhile poor Tuppence has resorted to befriending the vacuum cleaner.

The end is in sight with the building work.  On the plus side the new room looks fantastic on the downside the kitchen fitter turned out to be completely fucking useless.  Sorry, but there really is no other way to put it.  I wouldn’t trust him with a lego set.  Anyway the work is being redone but, of course, this is yet another delay.

I’m also waiting to hear from the oncologist in Warwick.  I want to give the chap a chance but I will start chasing next week.  I’d really like to be on something to try to combat the buggers in my lungs.  I have started another hormone therapy, Letrozole (replaces tamoxifen in trying to block the oestrogen which my type of cancer loves).  It seems to be causing massive hot flushes (a small price to pay) which have even resulted to me standing around in the garden at night, flapping my dressing gown around like some kind of giant albino vampire bat.  

Yes, I know it's a crap photo.  But would you really want more detail?

Monday, 6 May 2013

We are family

Picture from here

Today, while I reclined not particularly gracefully on my sister’s sofa, the other-half’s family rolled their sleeves up and cleaned my filthy house.  Gawd bless their cotton socks!  My house is never exactly spotless at the best of times but all the recent building work has resulted in the entire place being knee deep in dust, debris and disgustingness.  So Da Family descended and blitzed Discombobulated Towers.  One of my brother-in-laws manfully cleaned windows, windows that haven’t been cleaned since I don’t when.  Give that man a coconut.  My sisters too have been in on the act, carting boxes of pictures and knick-knacks (I don’t do minimalism) from my place to clean them cleaner than they’ve ever been before (as well as all the ferrying me around for radiotherapy appointments).  I am a lucky duck, albeit a bit of a lazy one.   Thanks to all!  

As I wrote in my previous post I had a bit of a bombshell recently, not only discovering that the cancer in my lungs has grown but also that the change had been ignored by my local hospital.  I still can’t go into the full details of this story without a) boring you to tears and b) sending my blood pressure through the roof.  Suffice it to say that I’ll be sending in a formal complaint to the hospital’s chief executive.  Anyway, as I no longer have faith in the local oncology bods, and would like some action taken regarding my health before hell freezes over, I have been to see an oncologist in London.  He was very helpful and thinks I might be able to go on a trial for a new chemo drug called TDM1*.  I hope to hear from a hospital in Warwick this week with further news.  Fingers crossed.  If this doesn’t work out I can always go back to see the chap in London. By the way, after a long cold winter, it was a gorgeous day in London so, in between medical appointments, we window-shopped in Marylebone High Street and mooched around Regent’s Park admiring the blossom.

* Apologies for linking to the Daily Wail for an explanation of TDM1 but it includes a quote from Prof Ellis, the chap I saw in London. That's my excuse.  But I still feel dirty.