My latest purchase this afternoon was a bbq from the Super U. Feeling very french with my wine and haricots verts. However, the blackened pieces of chicken on the bbq are proof that we are really from britain. My parents have clearly lost their mind as they have decided to drive the 300 miles from Holland to come and see us for a day! They have been really worried about JD and really wanted to come for a visit. Insane if you ask me but very sweet. Looking forward to seeing them.
When i was really little, my folks used to take us camping and have fond memories of my sister and I being in bed in the tent with my parents outside in the dark, having a drink and reading the paper. They did not use a torch but a Camping Gaz lantern. The slight hissing sound it used to make whilst burning helped me fall asleep. And now i finally have my own for the first time ever. And it makes me feel kind of strange. Takes me back to my childhood and makes me feel like an adult at the same time. No longer do i have to make do with sub-par battery powered torches. No, my lantern burns brightly. Well, it will later tonight. In the picture is also a very very old Camping Gaz stove that my parents passed on to me a few years ago. I think it is over 20 years old but still works like a treat. We are in Yport in Normandy after a day's driving. JD is having a sleep before we go for dinner. Am reading about how to manage a band whilst listening to Invocal. Holiday is bliss.
I have been trying to come up with a good opinionated post about why I am so angry about what the US right-wing numbnuts are saying about the NHS and the general direction of the healthcare reform debate overthere. But I just can not get past my anger and exasperation.
The US is being run into the ground by Republicans who will oppose anything Obama says, just because it is Obama saying it. Even if they actually AGREE with what he is saying.
Then there is the burning hatred that is tearing the country apart. People with guns, people holding up signs saying Obama and his kids should die, people painting Swastikas and Hitler mustaches on Obama's face.
I don't care if Americans want to kill each other. I just don't understand why they are doing this to each other. I know HOW they are doing it: The right has an iron grip on Fox News. The moderate people do not have anything as powerful on their side.
Faux News' latest gobsmacking idea: The NHS is a breeding ground for terrorists. You see, because of the Stalinist healthcare system in Britain, doctors get paid a pittance. So not many Brits want to be doctors. And so the NHS recruits from Muslim countries. And in a huhge communist system like the NHS, they become invisible and can do whatever they want. And they end up bombing Britain. All because of a National Health Service.
AND AMERICANS BELIEVE THIS! There is NO news editor at Faux News that says: that is not even news, it is ridiculous. No. It is put out there. As news. And Americans believe it.
And that just almost makes me burst in to tears. Because I just can not understand how you can possibly even entertain that notion, let alone broadcast it on a news channel.
Needless to say, I love the NHS at the moment. They have been nothing but spectacular with JD's brain tumour. Never had to wait for a scan or appointment, never had appointment canceled, never had doctor who 'did not have the paperwork', I can email the oncology nurse a question and he calls me back within minutes. I dread to think of the amount of money I would have had to pay for JD's treatment if we had been in the USA. In exchange for saving her life, I will gladly pay more tax. Or wait 4 months for that elective surgery.
So, the result of JD's PET scan was not a happy one (Not that we expected that).
Scan shows clear area of high uptake and increased metabolic rate in the right anterior frontal lobe. On the positive side, the Oncologist thinks the surgeon might be able to take the offending Grade III bits out, something they will get back to us about. I assume that is a good thing as it means it will at least slow things down a bit.
She is still starting the chemotherapy, Temozolomide, tomorrow for 5 days. At least we can apparently go on holiday because any side effects of the drugs are only expected to last for as long as she is actually taking the tablets. So we're off to France. Yay.
JD is much better about this than me. In fact, she went to see her PhD mentor after the hospital visit. I am feeling depressed and deflated after it all. This is not a curable illness. I think it is starting to sink in that, let's be honest, she will die of this sometime (assuming she doesn't walk under a bus before then). If she's lucky, it will be 10 years, rather than 1 but that is still not good enough!
I should be strong and organised and supportive for JD but right now, I just want to leave my job, my house, my car, Northampton, get all my money together and travel around for months, together, not worrying about anything. With no set time to return, no responsibilities. Just go away.
But apparently that kind of thing is only acceptable once things get 'really bad'.
Might go home now and have some booze and a good cry.
JD went to the Oncologist this morning to discuss the results of her first MRI since the radiotherapy. We were very hopeful because she has had no problems with the tumour at all, eventhough she has finished with the steroids. We thought: That means the thing has shrunk and that is surely good.
So to say we were gobsmacked when we were told the MRI showed signs of a change in tumour type is an understatement. He said there are indications that the tumour is progressing to a Grade III in certain parts. Next week, they will do a PET scan to see if this is indeed the case but either way, he wants to start Jane on a course or Temozolomide. Chemotherapy.
Hmmm....not what we were hoping for. The thing has changed from large Grade II to small Grade III, hence JD had no headaches etc.
They way he talked about it sounded all a bit casual. As if it really was only a tiny set back and that the chemo would possibly cure what the ratiotherapy was not able to do.
I am very confused about this. In the past 4 years, since discovery and initial surgery, the attitude of all doctors has been: not to worry, we just want to treat it to be sure it won't get worse. And yet, the result of each treatment has been a, small, step in the wrong direction.
Surgery: they said it was a small tumour and that they might as well take it out whilst they were there for the biopsy. They also said it might come back or it might never come back. RESULT: They were unable to remove it all, it came back and they were never able to take a proper biopsy.
Radiotherapy: they said it was nothign serious as yet but just to be safe, let's do a course of RT. In a high dose and the aim is to cure. A small risk of changing grade. RESULT: It didn't kill it and it looks like it changed grade but it might not have but either way she'll get chemo, just to be sure. Oh, and he said: well, it IS a rather large tumour....something else we were never told before.
Chemotherapy: he said he has many patients who have been on many cycles of this drugs and are doing fine. The aim is to cure so that it might never come back. RESULT: ?
My point is, how are we supposed to judge how serious this is getting when the doctors keep giving us the impression there really isn't anything to worry about yet and that they are just giving JD the treatments almost as a kind of precaution.
They are all tiny steps in the wrong direction and it makes it really hard for us to feel upset or scared or deal with the emotions because every time, we are given the impression things are really not bad yet. And so we are in some kind of emotional limbo. Almost like the progression of the tumour keeps creeping up on us. A bit like when people gain weight: it happens slowly over time and goes almost unnoticed, until it is too late and suddenly people realise they are fat. It feels like that: small things are added all the time to this story and yet, we don't really respond to it emotionally because it is such a tiny bit of news. So I am waiting for the moment where the doctor will say: well, we have tried all we can but it is now 'officially' incurable. I am afraid that when that happens, we will be shocked because we did not realise that is how bad it was...
Does that make sense?
I know doctors are trying to protect you from thinking the world is going to end right away but this half-baked attitude is so confusing: if it really wasn't such a problem, you would not give radiotherapy and chemo therapy! Just be straight with us! Over the past few months we have found out, via casual bits of info just dropped into the conversation by the Oncologist, that the tumour is actually quite large, is inoperable, has invaded the corpus collosum and thalmus. These sound like pretty serious bits of information that we were never actually told properly. And now there are signs it is changing to Grade III in parts. How the hell do we know how worried to be?
There. Rant over.
Feeling better now. Now where is that bottle of Scotch I bought.
On the practical side: it probably means our holiday to France is off in 2 weeks. Nobody will give JD travel insurance with a brain tumour and chemo therapy...:-( I am SO upset about that, you won't believe it.
At the cambridge folk festival. First experience of the day is already totally awsome: a songwriter workshop of am hour and a half by Beth Nielsen-Chapman. So brilliant in its simplicity and very informative about the process and art of songwriting. Makes me want to home and try to write a song.