“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!