09th Dec2008

Always alert (or scared?)

by Dutchcloggie

JD has been preparing for the radio therapy which will start on January 5th. On the 23rd of December, she’s having her final planning appointment an then we are ready to go.

She has been on quite a high dosage of Dexamethasone for a few weeks now (8mg twice a day) and she is having side effects such as indigestion, feeling weak in the muscles, having a huge appetite and so on. She is definitely getting more round in the face but I actually find it kind of cute. It is unfair that the drugs she needs to take to reduce the swelling in her head simultaneously increase appetite and reduce your strength to exercise.

JD has not had a seizure since the very first one that announced the arrival of the tumour, almost 4 years ago now. And yet, I always remain vigilant for signs. Any unexpected twitch or rolling of eyes puts me on high alert. I guess I am never completely relaxed since she got ill. Whenever she is in a different room and silent for a bit, I call out to see if she’s still OK. She always is of course but it just makes me feel better. I used to cycle to work but I don’t anymore, in case something happens to JD and I have to rush home. Small things like that just change your habits.

Last night I had a proper scare through. Or rather JD had a scare. She got up off the sofa to get the paper from the bedroom (about 6 metres away). When she had not returned after a minute, I called to see if she found the paper. No response. I called again. No response. Still too lazy to get off the sofa, I called again. Or rather, I yelled quite loudly. No response.

Now I was worried. I walked to the bedroom and found JD lying on her back on the bed with pupils so big you could hardly see any of the colour of her eyes. I asked her if she was OK but she just stared at the ceiling and did not say much. I asked her what was up and she slowly managed to form a sentence, telling me she was ‘just having a little rest’. Obviously that is rather weird as she was just going to get the paper from the bedroom and come back to the living room. I was really worried at that point and thought she was about to have a seizure. She had that weird, vacant stare and disoriented speech.
After 2 minutes, she sat up and said she was fine. The whole thing had felt like some kind of headrush to her but different. She said when she got to the bedroom, she suddenly felt really tired and decided to lie down on the bed and then it was all a bit vague for a minute or two.

Weird. A bit scary that is. It might have been a headrush, nothing more than that but combined with the suddenly massive pupils, I felt it was a bit freaky. Maybe it has nothing to do with her brain tumour. Maybe it has everything to do with it. But I hate how the thing just changes your life in small ways. How you are simply a little less relaxed every time something happens.

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.