28th Apr2005

June 6th

by Dutchcloggie

So the date is June 6. She’ll go in to hospital on the Sunday before. And we will have a big BBQ on the Saturday. if you are close enough to us to know where we live, then you are welcome to join us for the BBQ at the rugby club. And bring something personal to give to JD.

JD has to go to a pre-op check-up next week. Pre-op check up more than a month before the operation? Oh well, nothing if not thorough!!

28th Apr2005

Getting serious

by Dutchcloggie

And then you have to do all those things you have been putting off for far too long already. Will, Living Will, Power of Attorney etc.
Sometimes being a lesbian is really annoying. A registered partnership or marriage would solve this sort of thing in one instant. But no, us gay folk have to sort this out separately. Thank God JD and I have no joint possessions beyond the freezer and the bookcase we bought at IKEA.

I don’t get on too well with JD’s parents so it is important we sort things out before the surgery. I do not want to end up fighting over issues when JD is in hospital or even worse. I am her partner. I am her next of kin. This is her choice, this is what we want to put in writing.

So we made an appointment to see a solicitor.
I preferred life when it was about living rather than dying.

27th Apr2005

It’s a brain tumour

by Dutchcloggie

“Yes it is a tumour and I think it is best to remove it as soon as possible. How about 19th of May?”

JD’s best argument against that was that she will be in the middle of her final exams by then and I can understand that if you need brain surgery at the end of your university career, you want it after the exams so your obituary can say: “J.D. Bsc. Maths & Business”

So it is now the first Monday after the last exam. Great. I am sure that will enhance her concentration. Not.

We had come prepared. Over the weekend we had drawn up a list of questions, ranging from “Am I going to die?” to “Can I still go on the rides at Alton Towers?” You know, the important things in life. (Mind you, for the moment the answer is no to both questions). The doctor threw around some words we did not understand but the nurse was nice enough to translate for us. It is a tumour. It is at the front of the brain. It is in a very accessible spot. We don’t know if it is malignant but probably not. We might as well remove it as soon as we can even though it is slow growing one from what we can see on the scans.

OK. So as far as tumours go, this is not a bad one to have? Not sure. No matter how accessible it is, it is still brain surgery and it is still a brain tumour.

“You will get a letter home with a definite date. Here is a phone number you can call if you have more questions and here is the number for CancerBACKUP. They can help people with cancer with loads of information.”

Hang on, hang on. Cancer? Nobody mentioned that word before. Cancer=bad=death. Brain tumour=bad=death. So cancer+brain tumour=certain death? Apparently it is not that simple but brain tumours fall under the Cancer Banner. Hmm…right.

So what now? JD needs a will. And a Living will. I need to be recognised as Next of Kin (I really do not want to get into a fight with her parents over this if the moment we all fear arrives. I rather have it sorted out now and be clear on it). We need to organise a big BBQ the Saturday before the surgery for all her friends. We need to see if we can get married in England somehow. We were going to get married in The Netherlands at some stage but since JD has been advised not to travel in case of seizures, we are looking at maybe getting married at the Dutch Embassy if that is possible. It wouldn’t have any legal status here in the UK but it is still something we want to look at.

And in the mean time, JD is trying to study for her finals. As if that is going to happen. At least the people at University are being really good to her. Offering support and all sorts of things (Allowing her to do the exams in a separate room to help her concentrate etc.).
We have to be careful to not make it worse than it is. Because the tumour itself is apparently not dangerous (yet) as it is most likely benign, slow growing and in a very easy spot to remove. But it is still brain surgery. It still involves removing the skin from her forehead, cutting a hole in her skull, removing brain tissue and putting it all back again. It still involves the risk of taking out too much, which means damage to her emotional functions. It is still major surgery under complete anaesthetics. She may need radiotherapy afterwards, depending on how much tumour they were able to remove and if it is malignant or not.

And she will need MRI scans every 6 months for the rest of her life to check the tumour is not growing back.

It is unfair. I am angry and sad. For her. She is only 21. She shouldn’t have to be worrying about these things.

Looking back, getting concussion during a rugby match was a blessing in disguise. Because after that she had a scan and it showed the tumour. We might not have known for a long time if she had not had that scan. So I guess in a way it was all a good thing.

I am scared. I know it is OK to be scared. JD is scared too. My parents are scared. I am sure her parents are scared although their emotional communication leaves something to be desired.

This post is too long. Prepare for a lot more long posts. Anyone who wants to come to JD’s BBQ, you are welcome if you bring your own beer!

22nd Apr2005

Tumour part 2

by Dutchcloggie

So it really is a tumor. Went to the doctor today and he confirmed it. He did not have the scans with him so he could not tell us much more. We have to go back on Tuesday to look at the scans and discuss a course of treatment: Radiotherapy or brain surgery to remove it as good as possible. Depends on where in the brain the tumor is. Will blog more about it after we have finished our 2 tubs of Ben & Jerry’s we bought on the way home.

05th Apr2005

No news is good news

by Dutchcloggie

Time for an update. Nothing much happened really. JD went for another MRI brainscan on Wednesday. We were told in advance that she would be able to walk up to the consultant straight after her scan and that we would be given a definite answer on whether she has a brain tumor or not. But of course when we got to the hospital we were told there was no consultant available and that we would get a letter with an appointment to discuss the results.

Fuck. More time waiting.