A post by JD
Yesterday could have been one of the worst days in the year. But it passed without any major problems. I got a 2.1 which is what I wanted and which is plenty to see me into my MSc.
The biopsy results were slightly useless in that they couldn’t determine the type of tumour but that they could say that it wasn’t high grade (malignant). The consultant told me after surgery that he was pretty sure it was benign but it is still nice to have that confirmed. So no further treatment for me. Except for anti-convulsants for the rest of my life as they don’t know the exact tumour type. Yay!
So life continues as normal for now. There is a possibility that it could change into a malignant tumour but there’s no point worrying about that. I’m just getting on with life.
Post from JD
Degree results at 3.00pm tomorrow.
Biopsy results and meeting with consultant and ‘the other guy who deals with these types of things’ at 3.30pm tomorrow.
This really sucks.
Do I deal with this with copious amounts of alcohol at lunch tomorrow or just suck it up and soldier on?
It’s ok when I just have a bad day (I tend to have them quite a bit). It’s different when you know that tomorrow will be a bad day. Is that being overly negative? Am I just preparing myself for the worst by believing it is a bad day so that I won’t be too disappointed?
My mind is racing with all of the possibilities. Early death with no chance of getting the job that I want because I have a shite degree classification? Early death, good job? Shite job, alive for longer? Argh.
I’d like a switch in my head to flip when I get like this.
Post from JD
Hi everyone. I’m at home and have been since Thursday afternoon. Naturally it has taken me ages to get round to blogging but I have been even more restrained than normal as too much time at the computer would be bad.
I’m feeling really good at the moment. So much better than I thought I would. I’m still taking a raft of drugs but my dosage is reduced all the time.
Thank you for all of your kind words of support for myself and Marieke. I’ll write more after I have the staples out today. Wuhoo!
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?
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.
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.
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.
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
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.
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.