E is for Explicit and "Excuse my French"

FUCKETY FUCKING FUCKER.

COCKING CRAP

SWEATY DOGS BOLLOCKS! (ha ha, this is dedicated to a lovely Danish friend, Karina, from my student days.. she came out with this classic which I had never heard before... or since, surprisingly enough, and I just find it hilarious!)

I know I am an English teacher and should have a wide enough vocabulary to express my emotions without having to resort to swear words. Do you know what I say to someone who says that?! "Oh piss off and take the rod out of your arse!" I'd probably accompany this with a contemptuous look (you know the ones that teenagers are quite good at?!) Sometimes nothing cuts it like a good swear word!

Deep breath. What? Anger management issues? No, of course not, I just swear a lot, cry and then feel better. Some sensitive, observant readers might have picked up on the fact that there is something amiss...and those readers would be right. I had a CT scan on Sunday (had pain in my left lung and pain when breathing so went to A&E) which showed that the tumour has grown again; clearly the Afatinib has been doing flop all. Actually, it hasn't been doing flop all, it has been giving me diarrhoea, nausea, mild acne, dry, flaky skin and loss of appetite so I maybe I should count myself lucky. Funnily enough, I don't.

I suppose if I am being completely honest, I was not really surprised to hear that it wasn't working. I have had increased pain in my lower back for the last two weeks, so if the drug had been doing its job, why would I be getting new pains? Of course, I hoped I was wrong, but there you go. I'm getting used to receiving shitty news now, so when the doctor came to deliver the results of the scan, it wasn't such a shock. I'd be lying if I said I didn't shed a tear or feel fucking disappointed, but I didn't feel the shock or disbelief or lack of comprehension that I have experienced earlier in this ....(arrgh.. I nearly used the "J" word!) that I have experienced in the past few months.

So what now? I spoke to Femke yesterday and her idea is still to go for immunotherapy next (this was the original plan) but she obviously wants to see if Dr Petri dish from Rotterdam agrees and is also discussing my case with the team today. She asked Dr Herder to contact me, typically, she called while I was on the phone to Femke, but she said she'll try me again today. I don't think she will come up with any drastically different suggestions but I still want to talk to her, if only for reassurance. So Femke is discussing the case today, will see what happens in Rotterdam this morning, is also talking to my lovely radiotherapy doctor in UMC about getting more radiotherapy for the pain in my back and we'll go from there. She suggested an appointment on Wednesday afternoon for an introductory session about immunotherapy. I want to get on with something as soon as possible, so yes please, but equally - shit! I have two days of exams planned for Weds and Thurs this week. I emailed the coordinator yesterday afternoon to explain I would need to cancel Wednesday. Fingers crossed I can still do Thursday. I might even be able to do half a day tomorrow but they need to get searching for a replacement urgently, they can't fanny around waiting for me and my appointments.

At the moment I really want the radiotherapy appointment sorted because the pain is getting worse and quite frankly, it's dull and draining. I'm back to having hot baths to relieve the pain. However, having a hot bath on the hottest day of the year isn't exactly the most appealing prospect! Needs must so at 1.30 a.m. I was in the bath reading... dipping my book in and out of the bath as if I were dunking a biscuit in a cup of tea (submerging it but only very briefly to avoid the biscuit completely disintegrating and leaving your cup with a layer of sludge). Of course this 'dunking' activity was inadvertent... particularly as the book in question is not mine... ooops! I've been up since 4.30 a.m. (it's now 6.45 a.m.) and I'm waiting for Janneke from Erasmus to confirm what time we actually need to be there today. The original appointment schedule was 10.00 for blood test, 10.30 CT scan, 11.00 oncology nurse 11.15 Dr Petri dish. Since I had a CT scan and blood test on Sunday I have already asked (in a really desperate fashion) if I can skip another CT scan. It's all about the need for an IV needle for the fluid that is needed for the scan. Luckily on Sunday the girl taking blood and putting the needle in was good and more importantly, actually listened and was sympathetic to my explanation about why I am nervous about having needles put in. I think it being about 28 degrees outside helped because my hands were warm, for once, so my veins were easier to find. Well, whatever, we have a copy of the scans on CD to take with us and Janneke seemed to think that should be enough and a new scan is probably not necessary.

I'm back to focusing on eating a healthy, varied diet, so eating as much 'anti-oxidant' rich food as possible, as well as trying to bulk up. My legs aren't too bad, but my upper body is really bony and skinny and feels horrible. Went and stocked up on beans, pulses, veg (cauliflower, broccoli, spinach) fruit, nuts etc. yesterday and actually made quite a big, healthy veggie meal last night. I'm just happy that I feel hungry again and am managing to keep food in. I should start gaining weight again soon if this continues. (how naive ... I should know by now that every day can bring new joys and I could be feeling completely different by Friday, especially with the unknown quantity of new medication).

Mini-victory - just heard that I don't need another CT scan.. yippee! Please can this be the first piece of good news that we get today!

So whatever your religion or lack thereof, or spiritual leaning, please keep fingers crossed, pray for me, think of me, send me good vibes etc. today!