27 April 2009

Olney Ladies Champions!

Who's the daddy? Olney Ladies Rugby team are The Daddy! We won the league yesterday by beating Shelford 21-12. It means that next year we will play in League 1 North. That is only 1 level below the highest level in England. At my age, I reckon that is quite a good thing :-) (Notice how much higher I am lifted than the opposition!!)

Wonderful pictures of the match from Matt Rawlinson

And then there's hair!

Yippie! JD is sprouting hair. Of course in a silly place. Right in the middle of her forehead, a little patch of new hair has appeared. It is about as small as a Pound coin, but it IS new hair. It is much thinner than her 'old' hair so it feels nice and soft.

Made me feel a little bit like spring: new young plants start poking their head above the earth. Hopefully this means there is more new hair to come. I think I can spot the signs of new hair now and I have noticed a tiny change in another area on her head where the skin looks like it is getting ready for some hair to come out.

Fingers crossed!

20 April 2009

The Gadget Show Live (and other stuff)

JD and I had a lovely weekend. On Friday we went to our friend's house for dinner and a sleep over. JD managed to stay awake in some form until about 00.15am! Yes, amazing. Definite proof that TV sends you to sleep as we had been chatting without TV on all night.

On Saturday we baked bread and watched some rugby whilst I went on an epic shopping trip to the supermarket.

Then on Sunday we went to The Gadget Show Live in the NEC in Birmingham. It was good fun although I did not get to see as much of it as I had hoped. JD was bored so we did not walk around much :-( She bought herself a pair of MBT anti-shoes though.

The best part was getting in to the Special Theatre to see the presenters of The Gadget Show do a live version of the show. Tickets for that were sold out weeks ago but they were selling off tickets of people who had not showed up. They were £4 each but we had no cash :-( So I asked the doorman nicely and he said no. I then asked him nicely again and pointed at JD. I said: Please, sir, can we please go in? My partner has had a really shitty time recently and this is the first time we are on a day out since I don't know how long. The man looked at JD's hairless head and the scar, thought for a minute and said: ooo...OK then, in you go!


That bloody tumour gives us enough trouble as it is so I reckon we deserve some special treatment because of it. So far, we have gotten free tickets, ,free hotel room upgrade and a few bucks off JD's shoes by subtly mentioning how hard things have been for JD lately (which they have) and how tight money is because of it (which it is, kind off).

I don't feel bad about it though!

11 April 2009

The Jodie Foster Room

JD and I are away this weekend and we booked a room at The Buckingham Hotel in Buxton. This hotel, as per my previous post, has a rather odd website and that kind of made us want to book here. To start off, it has a picture of Basil Fawlty in the reception area. A good sign I say. The hotel is completely covered in pictures of Hollywood stars. When we entered our room, it turnd out we have been put in the Jodie Foster room. Is that a coincidence, that they put 2 lesbians in the Jodie Foster room? I dare say it is not.

I asked the receptionist and she said: No, probably done on purpose by the hotel owner who has funny quirks like that. Hey, I don't mind. The room is huge with a massive walk-in bathroom, a bidet (ooooo....posh) and a wonderful bath that we shall just HAVE to use. I have never been in a place this posh! And free wireless internet connection to boot.

JD is having a sleep on the luxurious bed next to me. I am going for a little walk in to Buxton to see where the shops and restaurants are so we know where to go for dinner.

10 April 2009

And we're off...

It took us three days to decide what to do, where to go to, or even if to go away at all. Remember: JD is currently almost unable to make a decision due to her brain having been fried by radiotherapy and steroids. Me, with my ADHD, I am never able to make a decision anyway so there we were, two indecisive people trying to make a decision. But this morning we finally managed to make a decision: we are away this Easter weekend. Yippie.

The decision was finally made when looking for a nice hotel in Derbyshire. We came across the website of The Buckingham Hotel in Buxton (yes, Buxton of the water). Their website is so weird that we jsut had to take a closer look. One of the first things I noticed was a little Gay Friendly badge on the site. I have never stayed in a Gay Friendly hotel as I never actually think about it but somehow it is nice to know they won't be surprised or taken aback when we turn out to have booked the double room on purpose, rather than the receptionist saying: are you sure you did not want the Twin Bed room instead? In fact, when I rang for the reservation, the receptionist asked for the name of 'my lady friend'. Bless her.

Should be nice to be away for a few days (2 nights) and hopefully let go of some of the stress of the past few weeks/months. Even if it is only 2 days.

Since they have free wireless internet at the hotel, I'll probably write a blog or Twitter updates on how things are going.

07 April 2009

Any change?

I emailed the neuro oncology nurse yesterday to let him know the problems JD is having (basically I sent him a slightly amended version of my previous blog post. See, blogging has its uses).

He rang me about an hour later to discuss it with me. He explained once more that it is all pretty normal but when I told him JD has morning headaches, he said that it was probably because the steroid dose is now too low. JD is on track to reduce her steroids little by little but the nurse-man said it is likely that JD still has swelling in her head and so reducing the steroids might actually not be a good idea right now. He said it might be the reason why she has gotten worse in the past few weeks instead of better.

And so the dose has been put back up again. Not to where it was at the very start but back to where it was a few weeks ago, before she started to get slower and more forgetful.

Hopefully this will make some difference. Either way, he made an appointment for JD to see him in clinic in 2 weeks time. Goodo. He kept saying that I need support too. Bu what with? My inability to accept JD is not able to keep to her promises, no matter how well she means (I'll do the ironing today, I'll order my own medication from the GP today etc.). I just need to be more patient and not get angry so that JD does not feel she is letting me down. It is hard enough or her without me being angry or upset.

A few days ago, I found a Low Grade Glioma support group on the internet and I just wrote a very long email about how I feel. The support has been really nice and helpful. I know I am noot alone out there. I know JD's symptoms are normal, I know I should be more patient. But it is still nice to have someone tell me they understand it is not that easy and hat they know how I feel.

Oh well, onwards & upwards (hopefully).

03 April 2009


After spending the best part of the day in bed sleeping, JD is tucking in to a prawn cocktail and i am slurping a nice soup in the pub. We would not get out of the house much otherwise. Hopefully the weather will be nice this weekend so we can go for a short walk in the sun.

02 April 2009

Not getting any better....

JD finished her 6 weeks of radiation for her right frontal lobe tumour on February 17th. Although we were warned by the oncologist about some side effects and these potentially getting worse before it gets better, we are quite concerned with how things are currently going with JD.

The first few weeks after the end of the treatment, things were fine. However, in the past 3 weeks, things have steadily gotten worse. She is not suffering too much from fatigue that we were specifically warned about but from a host of other problems:

- Severe loss of short term memory (Forgetting the question during the time that she is thinking about the answer)
- Slow in responding to communication
- Extremely distracted
- Unable to concentrate on anything
- Unable to do 2 things at the same time (for example, a phone conversation is almost impossible as she is distracted by everything around her during the conversation)
- Lack of empathy and understanding of other people's emotions, inability to take impact of her actions on other people in to account

This is more severe than we were expecting from the information we were given after the treatment and it is causing JD considerable frustration. Not only that, but it is also causing stress in our relationship as I am unable to talk to Jane about how things are going, unable to motivate her to do even the smallest things.
We have tried all the memory techniques I can think of but in the end, if Jane does not look at the reminders or the calendar or her phone or ignores them all, then there is little left to do.

The oncologist said it can take up to 6 months for things to return to normal but things are currently really difficult as I have no idea if I should push her into being more active and do more stimulating things or should I leave her on her own, at home, all day, doing nothing but Sudoku puzzles. She does however say that she does not feel depressed or sad. So I guess that is a positive thing.

As someone who has Attention Deficit Disorder myself, I feel JD has very similar problems, but much worse than what I normally experience.

I have done some research on the internet (yes, I know, that only puts strange ideas in people's heads....) and I have spoken to several people who had similar treatment to JD and have been given Ritalin or Adderal to help them to cope with the symptoms and have found it very helpful. I am probably way off the mark here but I am wondering if this is an option for JD as well. After all, ADHD is related to brain-problems in the exact same area as where JD's tumour and treatment are.

Obviously I do not know if this is all caused by the effect of reducing the steroids or by the damage the radical radiotherapy has done to that area of her brain. We are due to see the oncologist again in June but I feel something needs to be done sooner than that.

I think I might need to contact the neuro-oncology nurse to see if this is 'normal' or if something can be done to make JD's life (but also mine!) easier.