Immortal? Invisible!

Cancer Girl’s Log: 12.09.08, 08.48

 

Week15 – Still no report on the initial mammogram or the blood test, carried out at Great Western hospital – and no intention of requesting it from Royal Gloucester Hospital. But I finally have the full results of biopsy done at the same time; my HER2 status is negative. This means Herceptin (and all its brother and sister drugs) are of no use to me – but this is actually GOOD news as HER2 positive cancers are much more aggressive than others.

Dr Kim has my CT and bone scans from Great Western, but doesn’t have the accompanying radiologist’s report/annotations, so can’t actually interpret what these scans show! I did point out that there will be such a report, if she wanted to ask for it – this seemed to strike her as something of a revelation! For heaven’s sake! Have notes never been transferred between hospitals before? Why did she only request films of the two scans and not all my notes, anyway? As well as the radiologist’s report, Dr Kim doesn’t have, and doesn’t want, the results of the blood test Great Western did 3 months ago. This test would show if I’m anaemic/calcaemic; it would rate my liver function; and can be used to count tumour markers and so be a way of monitoring progress. Dr Kim says Royal Glos don’t use tumour markers with breast cancer – not “it isn’t useful”, just Glos don’t do it – but I suggested that, given the spotty nature of my liver, a liver function test would maybe be a good idea! Again, a revelation to Dr Kim!

 

However, on the “Finally! Some action!” side:

 The diclofenac has reduced the swelling, and therefore the discomfort, quite considerably; even Dr Kim noticed and is now acknowledging that my poor boob has been very painful. Partly due to this but also, in fact mostly I hope, due to the zoladex/arimidex, the lump is shrinking. Again, I had to actually ask Dr Kim what it was and what it is – she wasn’t going to tell me voluntarily! But, and brace yourselves here, it was 15-16cm diameter and is now 10-12cm. The measurements are vague, as Dr Kim couldn’t feel the edges very well; it’s all so much softer. To put that in perspective, when I was treated in ’04 the lump was considered quite big then and was only 3cm! Of course, if she had the mammogram, Dr Kim might have a better idea of what she’s measuring but, hey, what do I know?! If the drugs continue to work for me, and the lump continues to shrink at the same rate, it should have pretty well disappeared in about 9 months. I won’t be cured, of course, but I will look and feel “normal” again.

 

And back in the “Blimey! If they go any slower they’ll be in reverse!”camp:

I wrote to both Great Western and Royal Gloucester hospital on August 14th, requesting copies of all my notes. After three weeks I’d heard nothing so emailed the respective PALS offices (Patient Advice and Liaison “my doc’s a complete twerp” Service) and asked for their help accessing my medical records. Last week I got a letter from Gloucester to say they had received my request – on September 9th! So, that’ll be the email, not the letter! Their letter stated they are obliged to comply with my request within 40 days. I’ll write/email/take out a double page ad in The Times to Great Western on Monday and remind them of their obligation too so, by the end of October, some 5 months after being diagnosed, I should, finally, have all the test results and actually know something about my condition!

 

Apart from the ongoing frustration, lack of communication, failure to form a supportive relationship and broken promises on the part of the hospital where I am being treated (like sh*t); I’m very well! Term has started so I’m back to cycling round and about Swindon. Lots of start-up meetings at the moments but assemblies are starting to creep in and I’ll soon have events and activities to run and keep me occupied. I’ve put on a ton of weight over the summer so I really need to up my activity levels and get rid of that. As it worked so well last time I was being treated for cancer, my intention is to get back to the gym, start swimming again, and keep up the cycling.

In the words of “Queen”; Who wants to live forever? Well, me, actually! The hospitals/doctors/nurses can try and treat me like I’m invisible, but I plan to be immortal!