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.

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!!

16th May2005

And so it begins

by Dutchcloggie

A post from JD

..final exams to begin on Wednesday. And for those who are interested, the exams run as follows:

18th May PM Service Operations Management
19th May AM Entrepreneurship and Small Business
23rd May AM Marketing Analysis
1st June PM Finance
2nd June AM Operations Management

Yummy.

It doesn’t seem a lot but since the whole ‘going into hospital and having brain surgery’ thing kicked off they have seemed like an insurmountable task. But time passes and now they’re here. I can only do my best. But maybe my best will not be good enough as I am not happy with my preparation as I’ve found it very hard to concentrate without thinking about the surgery conveniently scheduled for the 6th.

I’m scared of not waking up. I don’t want M to be alone – that sounds really egotistical doesn’t it? I suppose it doesn’t matter for me as I would be gone but I want a few more tomorrows together. If I die it would be like I’ve been short changed by the bank of life. I’ve got new people to meet and a bestselling novel to write. Maybe some children? Definitely some cats. Fun job, money not important, but I’d like to be able to afford to travel. Taking M and exploring somewhere new. Just being in each others company. Outside somewhere lying on a patch of grass having a snooze. Anywhere really.

Maybe I’m just ranting because I’ve been inside working for the past few weeks. The tumour puts life in perspective. Exams are not important. I will not suffer too much if I don’t do so well but I would like to do well for my own satisfaction. I know what I am capable of achieving.

I’ve developed a highly tuned ‘shite filter’. If something isn’t important I ignore it. It amazes me how people can get wound up by the silliest things. I want to tell them to get over it and get on with their life. To do ‘something’ so that they don’t get to the end and feel that they’ve wasted their time. I understand that all too clearly now. If I live three more of my lifetimes again then I will be 84, which most would consider to be a good innings. So that’s another 63 years in which to do some decent living.

Or another 21 days.

30th May2005

By this time next week…

by Dutchcloggie

…we should know how JD’s surgery went. Hopefully she will be back from the OR with a bald head, a big plaster and a tumour removed. Hopefully she will be fine and the tumour will end up being removed completely and no further treatment is needed. Hmmm….that last bit is not going to happen I feel. They can apparently not remove it completely but only ‘debulk’ it.

I am getting a litle nervous now. Not scared (yet) but nervous. My parents have changed their holiday plans. They were going to drive to Italy with their caravan but they felt uncomfortable being so far away from me and JD in case something happened. SO now they are crossing the Channel from Holland to England with the caravan. This week they will be around the coast but by Saturday, they will come and set up camp here in Warwick. They’ll be here for JD’s BBQ and as long as she is in Intensive Care. And really, my folks like JD so they are not just here for me but also for her. I now realise I am pleased they are coming. My sister offered to come over as well but I was so busy when she was asking me that I just did not have the quiet time to sit and think about it. So I said that it would be a little too busy perhaps. So now she is not coming. I felt dreadful and really guilty for saying that. Especially because now that it is all much closer, I can see that it will probably be a bit difficult for me to be home alone in the evenings when JD is in hospital.

I am confused as to how afraid we need to be. Very very afraid (after all it IS removing a brain tumour) or should we be only a little afraid? I find that confusing. Perhaps I am afraid of embarrassment. We are throwing a BBQ for JD but for all we know, we might be overreacting to it all. No idea.

The doctor has said that JD will look like she has been hit in the face with a brick when she comes out of surgery. This is because they literally peel her skin down her face towards the nose so they can cut a hole in her skull to do the surgery through. Yuk. Poor girl. I wish it could be me, not her. I do not believe in God but if you do and you have a spare minute, just keep JD in your prayers. You never know, it might just work. Although you must realise that if it does not work, I will hold you and your God personally responsible for it!!!

05th Jun2005

See you later

by Dutchcloggie

Human pyramid

JD had a fabulous party yesterday. Almost all her friends came to a BBQ we organised. The weather was great and there was lots of fun, alcohol and volleyball. It is nice to know JD has so many friends who care about her. My folks had come from The Netherlands to be there as well which made me happy. People brought their own personal message for JD that I put in a big Friends-book for her to read when she is feeling down after the surgery.

I am about to take JD to the hospital and then tomorrow, hopefully, she will have the tumour removed and we can start putting this whole mess behind us. I actually think the hardest bit is yet to come. Up till now, JD has had no symptoms at all so as far as we are concerned, nothing has really changed. After the surgery, her head will have a scar, her head will hurt, her face will be bruised and treatment (perhaps radiation, perhaps chemo) will start. So in fact for JD, it will be worse AFTER the surgery that is supposed to heal her, than it is before it. Weird.

We are both scared but I am very confident that things will go OK. We have been lucky so far: if she had not hit her head during the rugby game, back in January, she would never have had the MRI and CT scans that showed the tumour. She has been treated with respect and care by the NHS staff. Everything has gone really well and fast. I have nothing but praised for the NHS so far. Let’s hope it stays like that.

There will probably not be much posting here for a few days. Just leave me your positive thoughts, either here or in your mind. We will need them.

06th Jun2005

Tumour diary – Day 1 She’s in

by Dutchcloggie

Getting ready for surgery

Do I care if anyone reads this? Not really. Just makes me feel better to write something, no matter how short.
I took JD to the hospital yesterday afternoon. We were reasonably cheerful until JD was appointed her bed. Right opposite a little old lady with her head in a full-on metal frame. Obviously she had some kind of spinal reconstruction done on her. Just not a cheerful sight. JD’s mood changed instantly. It obviously started to dawn on her this was all really happening. My heart just melted when she sat there in that chair that seemed to grow bigger every second.

The nurses seem nice so that is good. We just waited around and did a Sudoku. We found even the easy one to be excruciatingly hard on a day like yesterday. Surgery is today (Monday) at 1pm so remember to send your positive thoughts. You can pray if you like. it is nice to know that even though we are not religious, people take the time to pray for us and ask their God, who they feel is all powerful, for help in JD’s name. Thanks guys.

JD on the morning of her surgery

JD on the morning of her surgery

I am about to go to the hospital to say good morning (If the nurses will tolerate me outside visiting hours of course) and then during surgery, I am not sure yet what I will do. Wait in the hospital for 4 hours? Or go for lunch with my parents who have set up camp on a campsite near the hospital? Don’t know yet.

Risks of the surgery include seizures, aneurisms, hemorrhages etc. Nice thought. They can not remove the tumour completely so they will try as much as they can and the rest will have to be treated by monitoring it and operating again if it grows again in a year’s time or so. Or they give her radiation. But that can turn benign cells into malignant cells so they are not too keen on that unless it is the only option.

I love her so much. It is unfair.

06th Jun2005

Tumour diary – Day 1 She’s fine

by Dutchcloggie

A quick mobile blog to let you all know jane has had the surgery. It all went fine and she is looking really good. No bruises in her face yet and they did not have to shave her entire head either.

07th Jun2005

Tumour diary – Day 2 Good morning

by Dutchcloggie

JD has had a nice and quiet night sleep. That is according to the night nurse. According to JD herself she had a reasonable night sleep with headache and interruptions. She seems quiet this morning but fully awake and talking. She had breakfast and some bananas. She asked her mother for a digital camera so she can see what she looks like in hospital.

I am feeling ok but of course i am anxious about any possible changes in her personality or behaviour that may have come from the tumor or the surgery. I have to learn to ignore it every time i think: would she have been like this before the surgery as well or is this different? We will be ok i am sure. I love her to bits even with her newly acquired comb-over.

07th Jun2005

Tumour diary – Day 2 Afternoon

by Dutchcloggie

I am home for a short while to get some laundry done, have some food and get JD some clean clothes.

Nothing has changed since this morning so it is all still very good. Nothing has changed. Apart from me having read the letter she left under our bed in case something would go wrong during the operation.

Nothing has changed since this morning. Apart from me having gone from a composed partner to a teary mess, sitting at home with a letter in my hand, crying my eyes out.

In the envelope was a letter and another envelope. I have not opened that yet. And I don’t think I will. I will ask JD to open it for me this afternoon. If she does not want me to open it, she can throw it away. Or keep it safe for when it is needed. She told me I could read the letter so I did. If she had told me I couldn’t I wouldn’t have read it.

Just the thought of her not surviving. “Perhaps you can hear my voice or see me standing next to you when you read this…”. I pictured myself reading the letter after her death or after something really wrong had happened. And I just cried and cried and cried. Like I am when I am typing this now.

I would be absolutely destroyed if something ever happened to her. I am nothing without her.

Can we please never have to do this again. Please. Pretty please.

Thank you.

08th Jun2005

Tumour diary – Day 3 Going home tomorrow!

by Dutchcloggie

Today was a good day. In fact, today was a perfect day. JD was feeling much better and walked around. Her face is a little bit bloated from the bruising but nothing major. We went for a walk around the hospital and when I arrived for visiting hour this evening, she was all happy because the doctor has told her she can go home tomorrow!!

Can you believe it? they hack a piece out of her brain on Monday afternoon and she gets sent home on Thursday? Of course we are totally and utterly happy that everything has gone so extremely well. I don’t know if they made it all sound horrible at the start so that it would all look much better and easier once it was all actually happening. Or maybe JD is indeed recovering extremely quickly.

Either way, the next step is waiting for the results of the biopsy. But tomorrow is a nice day for the two of us. I got champagne, roses, a clean bed, tidy house, croissants for in the morning….did I forget anything?