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.

16th Mar2005

My apologies

by Dutchcloggie

I wish to apologise for all the spelling mistakes and typos in the past 3 posts. As you may understand, I have had very little time and I have not reviewed the logs before posting them. I shall edit them and remove the errors. I am sorry. I know you have come to expect better from me.
For those who are interested: JD. is fine. Bit shocked. Had lots of thinking over the weekend. All we can do is wait. If it is indeed a tumor, it is still too small to even take a biopsy so in the end, the knock on her head at the rugby match may well be a good thing: it brought the problem to light way before it might otherwise have been noticed.

Strange how a lot of jokes and remarks now no longer seem appropriate. Things referring to death, head and brain. Frontal Lobotomy….

I guess we will find a way to joke about these things. Somehow it feels easier to joke about The Thing once we know what it is.

12th Mar2005


by Dutchcloggie

scary word isn’t it….

you are looking at the doctor, waiting for him to use the word for the first time. You know that when he does, all you will hear from there on out is Possible Death. So let’s try and be reasonable about this. Any growth in the brain is a tumor so no need to assume imminent death right away. We are adults, we know how it works, no need to be afraid..

‘It might still be a bruise from the knock on your head but it is more likely to be the beginning of a low-grade tumour. It is still very very small so no……’

Tumour………..tumour………..it pounds in my head whilst I try to look relaxed and unconcerned. After all, it is not my brain this is happening to but JD’s (who by the way has now become a guest blogger here)

After the consult is over, a friendly nurse repeats what the doctor has said and puts it in perspective: if it is a tumor, it is in its infant stage. So small in fact that they can not even take a biopsy. So they have to wait for it to grow bigger before they can remove it. If it is a tumour. In 6 weeks time, there will be another MRI scan. If the dark patch on the scan has shrunk, it was simply a very hard knock on the head and a brain bruise. If it has not shrunk or even grown, it is a tumour. But for now, let’s not worry about it because it is obviously not a very fast growing one…..

And so we drive home. Advised not to go on holiday abroad until the proper diagnosis has been made and with the task of returning straight to hospital if JD feels dizzy, sick, headache or any pressure in her head.

I feel a strange sense of disappointment, although that is the wrong word I guess. This morning, we were told to prepare for a stay in hospital and possible biopsy surgery. You prepare for that, mentally and practically. And then you psyche yourself up all day. Only to hear that you should go home, relax and come back in 6 weeks.

This can not be happening to JD. This doesn’t happen to young healthy people does it?
Of course it does. And I know it does. But still, you just don’t think she might just be in the small group that gets this.

But let’s wait and see. It might just be a bruised brain. For now, we are taking a few days off to the South Coast of England. Walk along the sea front, breathe in the air. Talk, sleep, hold hands. And laugh. Because she makes me laugh.

12th Mar2005

Off to the hospital again…

by Dutchcloggie

So JD and I went to the hospital last night to see what the consultant had to say. And it wasn’t the good news we were hoping for. On the MRI scan they did a month after her seizure, there was still a black area of ‘abnormal’ brain size. They do not know what it is. It might be scar tissue from the bump on her head, it might be something else. If it was just swelling from the bruising, it should have gone away by now. But it hasn’t.

So she was giving three options: Monitor the area by having a brain scan every 2 months and see if it is a slow growing tumour. Alternatively they can do a biopsy, take some tissue from the brain and see what it is. Or she could go for the Full Monty and have brain surgery to remove it right away.

Great news on a Friday night. Our short holiday to Holland is not happening this weekend because we chose to go for the biopsy. We went home and had a bit of a sniffling session.

Today we are supposed to be at the hospital at 12.30 to see the consultant again. They will try to find her a bed and if they can, they will do the biopsy this weekend. If they can not find her a bed, they will do the biopsy when the doctor comes back from holiday in 2 weeks time. On the positive side, we are aware of the fact that it can not all be too urgent. After all, one of the suggestions was to wait and have a scan every so many months to monitor the thing. Apparently the doctor just wants to get it out of the way before his holiday. Fine by us.

Bugger. Brain + swelling + surgery = death. Well, at least in your mind it is the first thing that you think about.

I know I should write a deep and meaningful, poetic kind of insightful blog about this. But quite frankly, it simply sucks. Poking with a needle in the brain of your girlfriend to see if her brain is seriously wrong or not…..

I am however, hopeful. I am more afraid of the actual biopsy than of the result.

Please send positive thoughts to JD if you can spare a minute.

11th Mar2005

Now I’m worried

by Dutchcloggie

JD went for an MRI scan about 3 weeks ago. Just to check that she does not have a brain tumour that caused her seizure. She was told that, unless it was urgent, she would get an appointment with a consultant to discuss the results sometime in April. If urgent, she would hear it within 7 – 10 days.

So 7 – 10 days passed and we heard nothing. This was a great relief as JD had spotted on the doctor’s note that the MRI scan was to pay particular attention to the possibility of a brain tumour. This had upset JD a lot so when we did not get a call we were pretty relieved.

Until 30 minutes ago. JD got a call from a consultant. He wants to see her on Saturday. JD explained we are going away for 4 days. The consultant said he (or it, essential difference but I do not know which one he meant!) could not wait until our return on Wednesday. So we are now going to the hospital tonight for a consultant with him.

So now I am worried. Why the sudden rush?

I don’t want JD to have to see a consultant yet. It.Is.Not.Fucking.April.Yet!!!

14th Jan2005

What now?

by Dutchcloggie

We don’t know. JD might end up an epileptic for the rest of her life with Post Traumatic Epilepsy. Or the knock might simply have exposed a previous condition that leads to having seizures. Or it might be a one-off. They don’t know and they can not tell. That is the most frustrating bit. You just don’t know. It can happen again at any time. Or not at all. And in the mean time you have to adjust your life: don’t lock the door when going to the toilet, in case you have a fit. Always have a phone next to your bed in case of a fit. Always wear a bracelet with instructions for people if you have a fit. No driving for a year. No sport, no more rugby. Take it easy at University…

Take it easy? This is her final year. She wants to go to London for her Masters but that will depend on her grades. Will they be good enough? Or not? How will this impact on her future? I don’t give a rat’s arse about what it means for me although I am already aware that I need to be careful and not smother her by telling her not to do anything.

Taking it easy is not the same as not doing anything at all.
It is important not to treat her like a patient but it will be hard for her.

But it will not stop her playing rugby apparently. If she can no longer play the game, she will be involved on training. Our coach, bless him, has already asked her if she was interested in helping him with training sessions. Good. I would hate for her to loose that too.

I am sad. And worried. For her. She is only 21. I know epilepsy is not a death sentence but it is pretty shit none the less.

12th Jan2005

Home again

by Dutchcloggie

JD is home again. Thank goodness. After playing her secretary all day, it is nice that she can answer her own phonecalls again. I must have updated about 7 people throughout the day yesterday. Felt like one of them flashy PAs, on my mobile all the time.

Anyway….JD suffered a blow to the head at rugby on Sunday and that is where the seizure came from. Unlikely to happen again but she needs to take meds to prevent further seizures for a month. And it is likely she will have to surrender her driving license for a year. Bummer.

Poor JD She feels like she has a bad hangover (and a little drunk). But I am so happy she is OK. I was terrified when it happened but now I know what to do if it ever happens again: let her finish her seizure, then let her sleep it off and inform the GP in the morning. Only when seizures last longer than about 2 minutes should you call 999.

So far this year has not brought me lots of good things. Time for something nice. Like a win in the lottery. Means I have to buy a ticket first though and with the run of luck we have had so far…..

11th Jan2005

Scariest moment of my life

by Dutchcloggie

J. is in hospital. Recovering from a seizure. A proper foaming-at-the-mouth, biting your tongue, completely out of it seizure. Just like that. Out of the blue. Never had one before. And I did not know what to do. So I panicked. I was so scared. I called 999 and as I got a woman on the line, I was trying to get to J. Talking to her, screaming at her. And trying to listen to the lady on the phone.

JD in A&E in Warwick Hospital

JD was fine once she got to hospital

We went to bed last night and J. curled up to me. Nice warm spooning. But 10 minutes later she started to shake and convulse. I was totally freaked and in panic. I have seen ‘epileptic fits’ before but J. has no history of them so I was caught completely unaware. And it happened in her sleep which was scary too. She was foaming at the mouth and when she bit her tongue, she started bleeding. All I could scream at the operator on the phone was that my girlfriend was having a fit and was now bleeding. I did not realise yet that she had just bitten her tongue.

After about 70 seconds which seemed like an eternity, the convulsions stopped and she immediately fell asleep. But I did not know what happened so I was afraid she was going to lapse in some kind of coma. (Hey, what do I know about these things?????) So I kept talking to her and kept her awake until the paramedics arrived. They gave her oxygen and then she slowly came ’round. She woke up and was a bit shaky but quite cheerful.

Waiting for the doctor

It was actually kind of funny in a strange way. As far as she was concerned, she had gone to sleep and was suddenly woken up with an oxygen mask on her face and 2 paramedics in her bedroom!!! Her face was full of confusion and I felt so much love when she looked up at me for an explanation.

They took her to the hospital where they checked her out. She told them she got a knock on the head in last Sunday’s rugby match and that maybe could have caused a concussion that had gone unnoticed. They decided to keep her in for observation and I was sent home after she was admitted to the ward. They will do a CT scan later today.

Sleepy Jane

She is sleeping in the picture above by the way. She is all right now as far as we can see. Hopefully the CT scan will show that it is indeed concussion. If not, she will have to be tested for epilepsy.

I was so scared. Seeing the one you love foaming, bleeding, convulsing in your bed and see the eyes rolling.

Oh and by the way: anyone who says the NHS is not working is lying. At least the one in the hospital here in Warwick is working just fine for me.