20 December 2009

Invocal - Bubblewrap

Tataaaa! After all the hassle & hard work, here it is: The video for Bubblewrap, Invocal's new song. I love it. But then again, I'm biased. What do you all think?

Also, for those who are lucky enough to have Spotify, Invocal are now available on Spotify. Go on, have a look for them and then go and buy the music.

16 December 2009

It's been so long.....

Geez...it really has been ages since I was last here. Yes, you guessed it, the ladies of Invocal are to blame.

Most of you will be bored to death with the Invocal stuff from me (I'm not....) so, for those who want to know (mum, I KNOW you reads this!), things have been going well.

JD is still doing her monthly chemotherapy (Temodar/Temozolomide for those who want to know) and she is about to do her 6th cycle in January. After that they will do another MRI scan and this will hopefully show that her brain tumour has stopped growing. If it has, then JD will simply continue with the monthly chemotherapy cycle for as long as the tumour remains stable. If it has not stopped growing or it is still changing from a Grade 2 to a Grade 3, then, well, I don't really know what happens then. We'll cross that bridge when we get there I suppose.

For now, things are going well and the chemo is not making JD very ill. Tablets are the way forward I say!

I am spending all my spare time (and then some) on all kinds of random Invocal stuff. New website, new video, new EP, press, posters, gigs, whatever. It all looks lovely and the new EP, Strange Sugar (which you can buy here), is out in 3 days, together with the wonderful music video we made. It has been really stressful at times, especially since I tend to worry about everything. Currently I am worried about not making enough money for the band to buy a splendid new Tour Van. Not that they need it but they really want one :-)

SInce a few months, I have taken up guitar lessons again. If you live in Northampton and you are thinking of playing guitar or giving a guitar to your kids, I can recommend a really nice teacher, Rosie Swayne. Nothing to do with the fact that she is also in Invocal of course but seriously, nice lessons. I wish I had started playing again earlier. I am not really able to concentrate for a whole hour but most weeks I can get a decent amount of time of the lesson actually spent on playing guitar. Now all I need to do it stop talking and providing a running commentary whilst I try and play.

Went to see Eddie Izzard in Nottingham. In fact, I am wearing a "Covered in bees" t-shirt as we speak. Really really good. For those who don't know his Bee-routine:

Now this is sounding far too much like one of those awful Christmas round robin letters I really hate so this will have to do for now.

04 November 2009

Invocal - Sex

I bought a video camera the other day and I used it to film an Invocal gig. Obviously cameras with Auto focus do you like candles flickering and the quality is pretty poor. Especially if you compare it to the video I recorded on my little mobile phone which is almost even better!

Needless to say I returned the camera to the shop and got my money back.

In the meantime Invocal are working on a nice video that should be ready soon. I mean like a professional one with real camera people and stuff....

01 November 2009

How are things...

Long time no news. Things are going as well as can be expected I guess. JD is still on the monthly chemotherapy cycle and is about to start the 4th lot. We have decided to wait with surgery until the first 6 month cycle of chemotherapy is finished in January. they will then do a scan which may give us some idea if the tumour is actually being held back by the chemotherapy. we know there is no cure so long-term remission is what we are aiming for. For the moment JD is physically healthy and back at university to work on her PhD which is a great motivation.

In the mean time I am really busy with trying to get more Invocal gigs and publicity but I am feeling a tad out of my depth. They are absolutely brilliant and deserve a break and sometimes I feel I just won't be able to give them what they deserve. I guess it would be easier if they were just kind of average because hen every gig is a bonus. But because they re so good, it is frustrating that other people don't immediately jump on board and give them gigs etc. Perhaps it is time to realise I can not do everything and I should call in help neon a booking agent to help themget gigs. Agents have loads of contacts that I just don't have.

Selling Poppies

Selling poppies today in support of the Royal British Legion. They support veterans from all wars. Nice to spend a few hours for a good cause.

This week is International Brain Tumour Awareness Week. Will do some fundraising for them as well. Good karma.

29 October 2009

18 October 2009


Glee is my latest TV love fest. Good clean fun. With jane Lynch. If you liked Tracey Flick in the movie "Election", you'll love this. You have to skip over the music bits that are a little too High School Musical to my taste but the dialogue is great, witty, sarcastic (yay, Americans DO understand sarcasm it turns out).

Catch it online if you can. Really. There is never too much Jane Lynch. And I am saying this purely on artistic merit because she ain't pretty. Just damn talented. And funny.

I think.

07 October 2009

To cut or not to cut?

Another doctor's visit this morning. JD is about to start month 3 of her chemo therapy (Temozolomide). So far she has tolerated the first two treatments really well. Things are going better all the time with her, apart from the tumour obviously. She is losing weight, she is fitter, back to fencing and back to university. She has taken on mentoring some students or something so it is all very positive. It seems she has finally recovered from the radiotherapy.

But then last week she had a headache. She says it was 'one of those' headaches that indicated pressure behind her eyes (which would indicate the tumour is growing or at least the brain is selling for some reason). It only lasted a day but obviously enough to get worried.

Today we met with the Neuro Oncology nurse who keeps track of JD's treatment. He said the Neuro Surgeon thinks he can remove parts of the tumour. Our initial response was: great news, cut it out, any reduction in tumour is great, right?

On second thought, things may not be so black & white. JD is doing really well at the moment. She is tolerating the chemo really well, is back on track with PhD and everything.

So, if the headaches are not returning (yet), why would she go through the surgery? Apparently it takes longer to recover from second surgery, especially after the radiotherapy. So that would mean delaying the PhD once more which may have impact on her funding. There does not seem to be an urgent need for surgery right away. We initially understood that they could cut away some of the parts that have turned from Grade 2 to Grade 3 but that is not the case. They can remove just some bits of the tumour that they can safely get to.

So the Neuro Oncology nurse suggested she has an Outpatient appointment with a Neuro Surgeon to discuss the options first.

I think JD is leaning towards no surgery at least until they have done another scan after the first 6 month Chemo cycle. Unless of course the headaches suddenly return and get worse.

Obviously this decision has nothing to do with the fact that surgery soon will mean no ski trip in January :-)

hat do other people feel about these choices? Remove it as soon as possible, or remove it only when there is a medical need?

22 September 2009

Invocal in the Park

I think I am spending entirely too much time on Invocal. Things on my to-do list at the moment:

- Design new website
- Get website built & sort out hosting
- Organise photography session for new promo shots
- Sort out new promotional materials
- Get gigs booked
- Get more press coverage
- Update MySpace & Twitter with regular news
- Keep mailing list updated
- Organise a video shoot & manage creation of videos

Needless to say JD is getting a *little* bit frustrated with the amount of time I spend on Invocal. But on the other hand, she loves that I am doing something I enjoy immensely. And the music is nice: Acoustic, folk-ish, funny and from Northampton to boot :-)

This weekend, we went to The Racecourse in Northampton to take a few new photos. I took my camera along and then I shot a little bit of video. Since I don't have any decent video editing software, I used Windows Movie Maker (EVIL program!) to create a short film of a minute.

Invocal in the Park from Invocal on Vimeo.

This morning, Northampton acoustic group Invocal took to The Racecourse to have their picture taken. Things are never simple with that lot...

16 September 2009

Julie and Julia

Just about to leave the cinema after watching Julie and Julia. What a wonderfully entertaining film. With nice food and harmless acting. I suppose it should make me want to cook but it made me want to blog.

13 September 2009

She is shrinking! (but not the tumour)

Oh no! Someone come to my rescue. My wife is vanishing before my eyes! Since she has stopped taking steroids, there has been less and less of JD but in the past few days, things have really taken on a new degree of speed. Weight is now flying off. Yay. So much so that we went to H&M yesterday and bought a nice pair of jeans. After about 6 months in baggy trousers with elasticated waistbands, JD can wear a pair of jeans again and feel 'normal'. I am sooooo proud of her. She looks lovely and thin in the jeans. And it makes her feel better as well.

The irony in this is that she looks better and better and people are commenting on how good she looks and yet, she is in actual fact not getting better at all!

This week sees the second round of chemotherapy. Officially the course of Temozolomide is planned for 6 months, then a scan and then perhaps more chemotherapy. I asked the doctor what would happen if the scan shows the tumour has stopped growing after 6 months' of chemo. His answer was that JD would then continue to take the Temozolomide. So as long as the tumour does not grow further, she will keep doing monthly cycles. He said: I have patients who are doing really well and are already on their 38th cycle of chemotherapy.

When I think about the deeper implications of what he said there, I don't like that at all. So 3 years of monthly chemo and still alive is considered 'really well'.

Don't get me wrong, we are positive and will just continue to do the things we do as much as possible: play tennis, JD continues her PhD and stuff. But the fact that the tumour is not giving her any problems at all and yet it is apparently so dangerous that it requires the severely aggressive treatment is hard to take sometimes.

26 August 2009

I want it all

I want to eat all the cheese here. I want to eat all the lovely fish and the wonderful dried sausage. I want to eat and not get fat. Alas. Impossible. So i wil just eat now and diet later.

21 August 2009

Black chicken

My latest purchase this afternoon was a bbq from the Super U. Feeling very french with my wine and haricots verts. However, the blackened pieces of chicken on the bbq are proof that we are really from britain. My parents have clearly lost their mind as they have decided to drive the 300 miles from Holland to come and see us for a day! They have been really worried about JD and really wanted to come for a visit. Insane if you ask me but very sweet. Looking forward to seeing them.

20 August 2009

Camping Gaz family

When i was really little, my folks used to take us camping and have fond memories of my sister and I being in bed in the tent with my parents outside in the dark, having a drink and reading the paper. They did not use a torch but a Camping Gaz lantern. The slight hissing sound it used to make whilst burning helped me fall asleep. And now i finally have my own for the first time ever. And it makes me feel kind of strange. Takes me back to my childhood and makes me feel like an adult at the same time. No longer do i have to make do with sub-par battery powered torches. No, my lantern burns brightly. Well, it will later tonight. In the picture is also a very very old Camping Gaz stove that my parents passed on to me a few years ago. I think it is over 20 years old but still works like a treat. We are in Yport in Normandy after a day's driving. JD is having a sleep before we go for dinner. Am reading about how to manage a band whilst listening to Invocal. Holiday is bliss.

14 August 2009

We love the NHS

I have been trying to come up with a good opinionated post about why I am so angry about what the US right-wing numbnuts are saying about the NHS and the general direction of the healthcare reform debate overthere. But I just can not get past my anger and exasperation.

The US is being run into the ground by Republicans who will oppose anything Obama says, just because it is Obama saying it. Even if they actually AGREE with what he is saying.

For example on Living Wills:

Then there is the burning hatred that is tearing the country apart. People with guns, people holding up signs saying Obama and his kids should die, people painting Swastikas and Hitler mustaches on Obama's face.

I don't care if Americans want to kill each other. I just don't understand why they are doing this to each other. I know HOW they are doing it: The right has an iron grip on Fox News. The moderate people do not have anything as powerful on their side.

Faux News' latest gobsmacking idea: The NHS is a breeding ground for terrorists. You see, because of the Stalinist healthcare system in Britain, doctors get paid a pittance. So not many Brits want to be doctors. And so the NHS recruits from Muslim countries. And in a huhge communist system like the NHS, they become invisible and can do whatever they want. And they end up bombing Britain. All because of a National Health Service.

AND AMERICANS BELIEVE THIS! There is NO news editor at Faux News that says: that is not even news, it is ridiculous. No. It is put out there. As news. And Americans believe it.

And that just almost makes me burst in to tears. Because I just can not understand how you can possibly even entertain that notion, let alone broadcast it on a news channel.

Needless to say, I love the NHS at the moment. They have been nothing but spectacular with JD's brain tumour. Never had to wait for a scan or appointment, never had appointment canceled, never had doctor who 'did not have the paperwork', I can email the oncology nurse a question and he calls me back within minutes.
I dread to think of the amount of money I would have had to pay for JD's treatment if we had been in the USA. In exchange for saving her life, I will gladly pay more tax. Or wait 4 months for that elective surgery.

12 August 2009

More misery

So, the result of JD's PET scan was not a happy one (Not that we expected that).

Scan shows clear area of high uptake and increased metabolic rate in the right anterior frontal lobe. On the positive side, the Oncologist thinks the surgeon might be able to take the offending Grade III bits out, something they will get back to us about. I assume that is a good thing as it means it will at least slow things down a bit.

She is still starting the chemotherapy, Temozolomide, tomorrow for 5 days. At least we can apparently go on holiday because any side effects of the drugs are only expected to last for as long as she is actually taking the tablets. So we're off to France. Yay.

JD is much better about this than me. In fact, she went to see her PhD mentor after the hospital visit. I am feeling depressed and deflated after it all. This is not a curable illness. I think it is starting to sink in that, let's be honest, she will die of this sometime (assuming she doesn't walk under a bus before then). If she's lucky, it will be 10 years, rather than 1 but that is still not good enough!

I should be strong and organised and supportive for JD but right now, I just want to leave my job, my house, my car, Northampton, get all my money together and travel around for months, together, not worrying about anything. With no set time to return, no responsibilities. Just go away.

But apparently that kind of thing is only acceptable once things get 'really bad'.

Might go home now and have some booze and a good cry.

05 August 2009

Temozolomide...sounds scary

JD went to the Oncologist this morning to discuss the results of her first MRI since the radiotherapy. We were very hopeful because she has had no problems with the tumour at all, eventhough she has finished with the steroids. We thought: That means the thing has shrunk and that is surely good.

So to say we were gobsmacked when we were told the MRI showed signs of a change in tumour type is an understatement. He said there are indications that the tumour is progressing to a Grade III in certain parts. Next week, they will do a PET scan to see if this is indeed the case but either way, he wants to start Jane on a course or Temozolomide. Chemotherapy.

Hmmm....not what we were hoping for. The thing has changed from large Grade II to small Grade III, hence JD had no headaches etc.

They way he talked about it sounded all a bit casual. As if it really was only a tiny set back and that the chemo would possibly cure what the ratiotherapy was not able to do.

I am very confused about this. In the past 4 years, since discovery and initial surgery, the attitude of all doctors has been: not to worry, we just want to treat it to be sure it won't get worse. And yet, the result of each treatment has been a, small, step in the wrong direction.

Surgery: they said it was a small tumour and that they might as well take it out whilst they were there for the biopsy. They also said it might come back or it might never come back. RESULT: They were unable to remove it all, it came back and they were never able to take a proper biopsy.

Radiotherapy: they said it was nothign serious as yet but just to be safe, let's do a course of RT. In a high dose and the aim is to cure. A small risk of changing grade. RESULT: It didn't kill it and it looks like it changed grade but it might not have but either way she'll get chemo, just to be sure. Oh, and he said: well, it IS a rather large tumour....something else we were never told before.

Chemotherapy: he said he has many patients who have been on many cycles of this drugs and are doing fine. The aim is to cure so that it might never come back. RESULT: ?

My point is, how are we supposed to judge how serious this is getting when the doctors keep giving us the impression there really isn't anything to worry about yet and that they are just giving JD the treatments almost as a kind of precaution.

They are all tiny steps in the wrong direction and it makes it really hard for us to feel upset or scared or deal with the emotions because every time, we are given the impression things are really not bad yet. And so we are in some kind of emotional limbo. Almost like the progression of the tumour keeps creeping up on us. A bit like when people gain weight: it happens slowly over time and goes almost unnoticed, until it is too late and suddenly people realise they are fat. It feels like that: small things are added all the time to this story and yet, we don't really respond to it emotionally because it is such a tiny bit of news. So I am waiting for the moment where the doctor will say: well, we have tried all we can but it is now 'officially' incurable. I am afraid that when that happens, we will be shocked because we did not realise that is how bad it was...

Does that make sense?

I know doctors are trying to protect you from thinking the world is going to end right away but this half-baked attitude is so confusing: if it really wasn't such a problem, you would not give radiotherapy and chemo therapy! Just be straight with us! Over the past few months we have found out, via casual bits of info just dropped into the conversation by the Oncologist, that the tumour is actually quite large, is inoperable, has invaded the corpus collosum and thalmus. These sound like pretty serious bits of information that we were never actually told properly. And now there are signs it is changing to Grade III in parts. How the hell do we know how worried to be?

There. Rant over.

Feeling better now. Now where is that bottle of Scotch I bought.

On the practical side: it probably means our holiday to France is off in 2 weeks. Nobody will give JD travel insurance with a brain tumour and chemo therapy...:-( I am SO upset about that, you won't believe it.

02 August 2009


Guitar tent at cambridge festival. I want to buy something! I want i want!

Cambridge folk festival

At the cambridge folk festival. First experience of the day is already totally awsome: a songwriter workshop of am hour and a half by Beth Nielsen-Chapman. So brilliant in its simplicity and very informative about the process and art of songwriting. Makes me want to home and try to write a song.

30 July 2009

Invocal promo material

Invocal are a female acoustic band from Northampton that perform with cello, guitar, oboe and harmonious voices

Invocal are a female acoustic band from Northampton that perform with cello, guitar, oboe and harmonious voices

There we go. The postcard/flyer for Invocal is finished. Quite a decent start I'd say. Created a logo & house style.

24 July 2009

Important work

Am working on a press pack for Invocal. Since i have no design skills at all, i am clinging on to my Dummies guide for dear life. Fun to do though. Steep learning curve.

16 July 2009

Invocal - Part 2: I am a manager

A few weeks back, I went to see Northampton band Invocal, as you may remember from my previous post.

As it happened, Invocal were looking for a new singer to join them as one of their members was rude enough to have a baby and leave the group. I auditioned but I did not get the gig. But things move in a mysterious ways and somehow, it looks like I have now ended up as their manager.

Yes, yours truly is now the manager of a real band, with real gigs and real CDs.

How does a manager do? How much time will this take me? How will I do this? How will I not let them down? I met with Rosie Swayne of Invocal today at lunch to discuss the options. I was honest with her in saying I have never done anything like it before so I'll need help. What I do have is a flood of ideas, some of which may never happen, others are easier for me to implement since I know people in design & video (we're already talking doing a video now).

Will I have to give up playing rugby as this will take up a lot of my spare time?

I really want to do this right as this is a great band that needs to play more gigs as they are a real treat to watch live.

This week I will be putting together a list of things that need doing: Press pack, press contacts, list of festivals to target next year, find my way around how to book your band, how to get them noticed etc. The aim at the moment seems to be more gigs and secondly sell more albums.

Anyone know how to get a good band playing at the Edinburgh fringe festival?

Anyway. There you have it. Invocal. You heard it here first. Now go and buy their album.

09 July 2009

We are going on holiday!

Not yet unfortunately but in August! Yay! 2 weeks away to France. My sister is hoping to give birth to kiddie No2 then as well so once we are on the mainland, we can just drive on to Holland if she is kind enough to deliver whilst we are in EUrope.

Other than that, the plan is to go camping in Brittany and cycle parts of the Nantes - Brest Canal. That is a nice and flat route to keep JD happy, and nice and cycling to keep me happy. We have ordered a nice book from Amazon about the canal and a map of Brittany so we are all set. Now all we need to do is decide where along the canal we will set up camp. We won't cycle the whole thing but just day trips here and there. I am BEYOND excited.

In other news, JD and I have gone back to the gym and I am SO proud of JD. She was focussed, put effort in, sweated loads and even signed up for a 6-week fitness plan specially put together for her. Last time we went to the gym, she was unable to concentrate for more than 2 minutes, kept stopping and did not sweat at all since she put no effort in: lost concentration before she even got going.

All these little things make me feel really positive about the future: she's really getting better. Yay. Bring on the holiday!

02 July 2009

Bike found

On our way to the pub for a nice waterside dinner, JD spotted a shade of blue in the bushes. It turned out to be this lovely brand new Raleigh folding bike. No really, it is brand new, probably used only to escape the cops or the keeper of the shop from where it was stolen. It will be on Ebay shortly and it will be subsidising the fixing of the dent in the car that someone made and then drove off,

Dottie the (lesbian) Sock...

...and how she found her match.

A book about something we can all relate to: A sock that just can not find her match. We have all been through it: somehow, you have socks that just don't go together. No matter how many times you wear the two odd socks together, no matter how much you try to make them in to a pair, it just does not feel right.

That is how Dottie feels. She's a cute sock, looking for her match.

She won't give up until she finds [her match]. She asks her Mom. She asks her Dad. She asks her Sister. She asks her Brother. She even asks her Nana and Papa. She doesn't find her pair, until she looks inside of herself and follows her heart.

Dottie is a lesbian sock.

Christine Gayle wrote a cute children's book about looking for that other person who makes you complete. And in Dottie's case, she is just a girl sock, looking for another girl sock.

Needless to say this book has caused outrage in the US.

In a rather funny article about the book,After Ellen says:
When Dottie was released last week, Gayle began receiving emails from angry parents saying there should be some kind of Big Gay warning on the outside of the book. It seems so non-threatening, then you open it up and — BOOM! — homosexual stockings. How is a kid supposed to recover from something like that? Oh, and also: writing about lesbian socks will cause God to doom America to hell.

I am laughing still after reading that article. Both at how funny it is, but also, sadly, at how ridiculous, once again, American parents are about anything that might have anything to do with educating people about homosexuality.

20 June 2009


At a music festival in Northampton. Hardly anyone in the audience but on stage is Invocal. They are a local group and totally mad. Wicked stuff. Lovely harmonies. Here's a video from a performance in February 2008.

16 June 2009

Jane goes spare

Gone for a nice evening of bowling with JD. Spontaneous decision. At 3 games for £7 each, I reckon that is goods value for a Tuesday night. We were really really bad! I beat JD in first frame with an impressive score of 71! The second frame was much closer but I still came out on top with an impressive score of 76. The third game I lost. JD beat me 85-84! Impressive scores? Not really. But it sure was a load of fun. Almost better than spending the whole night watching Law & Order / Law & Order SVU / Law & Order Criminal Intent on the Hallmark Channel all night.

No, actually it was more fun than that even.

11 June 2009

Footing the bill...

I am going to run out of attempts to be witty about my mother's foot but one last one then....

For those who have asked me how she is doing: she's doing better. Had surgery, bandages off, stitches out tomorrow and not allowed to put any weight on it for the next 6 weeks! She's got a nippy little wheelchair to race around the house (my dad nearly had a heart attack when she tried walking around on crutches so I think they are out). The builder has made ramps so she can get in to the garden (front and back) and in to the bathroom. She's happy because she can now hang the laundry on the line again and tend to her roses.

My poor dad is doing all the shopping, cooking, washing and cleaning but mum says he is being fabulous. I can just imagine her directing him from her wheelchair.

Anyway, 6 weeks in the chair, then another 2 months of rehab and physio. Poor woman. That's your summer gone.

02 June 2009

Men are disgusting

Now calm down, before you start accusing me of penis envy or radical feminism. Let me explain.

I work in an office with men. And not a day goes by without someone (they never own up to it) pissing on the seat, on the floor or some other place that is not IN the toilet bowl. No matter how many times I voice my disgust when it is discovered again, it still happens.

Even worse: people leave floaters in the toilet and skid marks. Again, mentioning it out loud does not encourage anyone to clean it up. Bad. But even worse, somehow, is that everyone comments on it but nobody feels the need to take the toilet brush and clean the bowl. I KNOW they may not be the person who did it, but all the guys seem perfectly happy to leave the skid marks in the bowl for someone else to clean up. And usually, that is me as I am aware of the fact that we might have some clients in at some point and it would just be embarrassing to have them face the skid marks.

And so, my conclusion is that men are disgusting. They either make a mess or are happy to leave the mess as they see no need to clean it up.

31 May 2009

Cycling trip

Group of girls on the Brampton Valley Way. Hot.

21 May 2009

My mother's broken dreams erhm...ankle.

My parents went on a 10 day trip to Italy this week. They left on Tuesday to stay in a house near Genoa. This morning, my dad rang to say mum had slipped in the shower and broken her foot/leg/ankle (whichever). On their second night. Poor man was in tears. They speak a bit of Italian but nowhere near enough to be able to call the ambulance and explain what happened. Luckily the neighbour speaks a bit of German so they helped with getting mum sorted for a hospital trip.

Her foot was instantly purple and swollen and it is, say the doctors, a nasty fracture that requires surgery. But hospitals in Italy are high on the MRSA list so mum said she would absolutely not have surgery in Italy. So now they will try to fly her home on Saturday. They suggested she could hobble on to the plane on crutches but dad said she is depressed, scared and unstable on her feet so he won't let her leave unless it is ina bed. So now they are flying over a nurse from Holland (that's the law) to sit next to mum's bed in the plane.

Dad is right though. It must be really scary to slip in the bath. And if you have never ever used crutches before, going on a plane trip with them at 60 is not a good idea.

I feel sorry for both of them. Mum in a skanky hospital with no privacy curtains and terminal patients mixed with minor injuries, nobody to talk to, not many books to read (they had planned loads of trips, rather than lots of quiet reading). Dad alone in the holiday house they rented, on top of a hill, 3miles from the village, nobody to talk to, not much Italian to speak and cupboards full of shopping and food (they had just done a big shop to sustain them with wine, cheese and other nice nibbles.)

Luckily my sister speaks fluent Italian (did I mention she is pregnant again?) so she can speak to people on the phone for dad if needed.

Poor dad. He was so stressed with work, he really needed this holiday. And now he will be spending the next few months caring for my mother. Hopefully the surgery will be done soon and mum will be home recovering asap.

Should I go over there to help? Nothing I can do. It would just be to keep her company.....Grrrr...I hate not being able to help.

19 May 2009

Slowly but surely...

Things are indeed getting better I feel. Maybe the fact that JD's hair is now growing back in earnest makes me feel very hopeful of this all being over someday soon. I love touching the fuzzy hair on her head and stroking it. Last night we went to a rugby tournament that we both play in over the summer (Touch Rugby so no need to worry) and the girls in the team (who had not seen JD for a week or so) all said: Wow! Your hair is really growing back fast now. It made me smile. It will be a long time before JD will be back to the way she was before the treatment started. She looked a little confused and slow to react sometimes but she said she was really enjoying herself so that was great. Maybe the tactical talk we had before the match helped her.

In touch rugby, there are only 6 players on the pitch and they have no specific task and decisions on what to do with the ball are made in a split second; exactly the thing JD is struggling with at the moment. So I suggested that instead of doing that, JD should be the only player with only 1 specific task on the pitch so she could focus on that one thing. So all the players on the team knew what JD would and wouldn't do.

It seems that worked really well and JD played quite well.

We are getting her a free bus pass because last week her driving licence was revoked due to having had radiation to the brain and some focal minor seizures. It is the right decision but it made JD quite upset. The emotional impact of loss of independence is something that can not be underestimated. It is different if YOU make the choice not to drive. It is not nice when you are told you are unfit to drive.

But things are getting better. Slowly. But surely. The only thing to find now is: how far does the progress go and when will any permanent damage become obvious if there is any?

15 May 2009

More hair.....

Look at that! A lovely head of hair. It is growing back nicely. Far too slow for my liking as I am really excited about it and I want to see what it will look like when it has grown back fully!

I love stroking her head and the new fluffy hair.

12 May 2009

High in grade, low in grade? Anyone? Tumours. High in grade, low in grade?

Yesterday JD & I went to another brain tumour seminar in London. Informative as it was, it focused too much on high grade tumours and not enough on low-grade ones. I understand high grade tumours are more 'sexy: they are aggressive, they kill real quick (in a few weeks sometimes) and they are mostly incurable. It is much easier to get sympathy and funding for such a terrible disease.

With a low-grade tumour, people can live for decades. In fact, they can even be cured in some lucky cases. But that does not mean they do not kill a lot of people. And just because you can live with a tumour for years does not mean it is not cancer or invasive. Low grade tumours are called low grade because they grow slower than high grade tumours. They may be dormant for years before growing at all and they might grow at such a slow rate that many people with low grade tumours are on a 'Wait and See' treatment plan, meaning nothing is done about the tumour until it grows too big.

But there are plenty of people with low grade tumours that have radiotherapy, chemo therapy, multiple operations to remove tumour tissue and resulting brain damage from removing healthy brain tissue and so on.

So although they may not kill as fast as high grade tumours, they are still a nasty thing to have and they can still seriously wreck your life, if anything because of the constant fear of having a time bomb in your head that might go off at any moment.

There is not a lot of research done in to low grade tumours. Treatment that works on high grade tumours does not have to work on low grade ones. They are different animals.

And so it means we just don't know much about it at all. Not much info on life expectancy, not much info on treatment, not much info on quality of life. Not much of anything really. But a lot of pain, trauma, hospital visits, crying, hair loss, illness, anger, fear, loss of independence, loss of self esteem, loss of quality of life.

People with low grade tumours get all that. But nowhere near the (media) attention they and their loved ones deserve.

03 May 2009

Tennis in the park

Yay! The tennis courts are open again. Great way for JD and me to get some exercise in and have fun at the same time.

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.

25 March 2009

JD treatment photo diary

We took a picture nearly every day of the treatment. As you can see, there is not much change in how she looks but you can certainly tell when she was having a tired day!

20 March 2009

It has a name...Somnolence Syndrome

The oncologist warned us that Jane wold be feeling the side effects of the radiotherapy for probably another 5 months. He said she would notice things such as tiredness, memory loss and somnolence. We nodded and pretended to understand. We thought somnolence was just related to sleeping. Well, it kind of is. But Somnolence Syndrome is also the exact reason for JD being almost completely unable to remember to do stuff.

I can call her from work at 1.59pm to ask if she is going in to town (as she said she planned to do) and she'll say: I'm going after the 2pm news. Then, when I ring again at 3pm, she is still at home because she got side tracked and then forgot to go. In a single minute! I then have to stay on the phone as I tell her: if you still want to go in to town, get up now (I wait for her to get up) put your shoes on (I wait as she puts her shoes on), pack your bag (I wait as she packs her bag), take your phone and wallet and walk out the door (I wait until she has locked the door behind her). If I don't do this, she can be distracted at any stage of the process and end up doing something different altogether.

In the past few weeks this kind of behaviour has led to me being really angry at times and feeling really bad about that anger. More out of frustration as I just can not understand how you can forget something in the space of a second. It has also made JD upset. We both failed to grasp the full impact of Somnolence Syndrome. We did some research on it last night and we were both quite shocked.

The principal symptoms were those of excessive drowsiness, feeling clumsy, an inability to concentrate, lethargy, being mentally slow and fatigue. The unexplained and overwhelming nature of the symptoms was a cause of anxiety. Somnolence syndrome is a collection of symptoms consisting of drowsiness, lethargy and fatigue. Forewarning patients and planning supportive management around times of drowsiness and fatigue can help to reduce the anxiety that these symptoms cause. Source

It explains a lot. I now feel more able to accept this behaviour. I feel more able to understand and deal with it. As long as JD does not mind me holding her hand, I will gladly guide her and help her keep her focus on simple stuff.

19 March 2009

Poker night at work.

In the office for my first ever poker game. Of course i am out already but i can see how this is a highly addictive game. Good fun even if i have no clue how to play this.

09 March 2009

On jobs and task lists

I have had another good thought about my last post about jobs and tasks that JD 'has to do'. I think I have been totally unclear about things. So, here's my attempt to clarify things.

I do not set JD tasks around the house whilst I am at work. Her To Do List contains entirely of things that have nothing to do with me. They are things relating to her PhD project (small jobs to help her get started again after her time off for treatment), to her life (order medication, pay her credit card bills), to HER responsibilities she has voluntarily chosen to take on such as the fencing committee etc. They are not tasks I set her.

All these jobs are written down on Post-It notes that are stuck to the table. And every day, she just picks some of these that she will try to achieve on that day, no matter how big or small. If we do not write every little task down, she'll forget.

I love JD a lot and when I see the amount of things she has to do (some of her own choice, others simply things people have to do in life, such as financial admin etc), I am afraid she will drown in it and so I am trying to help her achieve as many of these tasks as possible by encouraging her and writing them down and going through the ones she wants to do for the day.

When I get upset about JD having so many tasks on the go, it is because I am afraid that JD feels like she is drowning in having taken on too many things. And that in turn upsets and frustrates me. I want to help JD stay on top of the things she has taken on so that she doesn't feel too overwhelmed. I am not annoyed or frustrated if she does not do stuff as such. I am upset because I am afraid she'll feel like she failed. And since I am not good at keeping emotions under control when it comes to my worries about JD, in a strange way, it then comes out in frustration directed at JD. As if she is not doing enough to make her own life easier. I can not make her own life easier for her as they are things SHE needs to do. And this kind of frustrates me because I would LOVE to take it al away from her and do all the jobs for her so she can clear her mind of responsibilities and feel relaxed and not pressured by all the things she needs to do.

I am not fussed about 'equal shares in household work'.
Yesterday for example, I cleaned the entire flat and cooked SUnday roast and JD spent the entire day doing the ironing. I was very happy at the end of the day as I felt we had achieved a lot together. House clean, ironing done, food cooked. All ready to start a new week. It doesn't matter to me that I may have done a lot more work because I know the ironing was a big effort for JD.

It is not about what is achieved, it is about the willingness to put effort in. So if all the effort yields only a small result, I am not upset and the failure to finish the task, I am happy as long as the effort has been made. Does that make sense?

I hope this sheds some light on what I actually mean. That I am not unreasonably asking JD to do lots of things and that I am not annoyed with her for not 'making my life easier. I am really quite a nice person :-)

06 March 2009

Confused after radiotherapy

It is now 2 weeks since JD finished her 6 week course of radiotherapy to the Astrocytoma in her right anterial frontal lobe.
We were expecting side effects to slowly go away. Instead it seems things have just gotten worse. Maybe it is related to her being weened off the steroids at the moment? She was on a really high doses of Dexamethasons (16mg per day) and so weening her off will take until the end of May!

JD never really experienced the tiredness we were warned about at the start of the treatment. So that was a good thing. Even now, although still easily tired, it is still nothing like the tiredness we were expecting. So that is good.There are some headaches now but that can be related to the reduction in Dexamethasone.

The thing that worries us a bit though is the increased confusion, lack of concentration and inability to remember things.

JD has apparently had a rather radical dose of radiation, to make sure the tumour dies a proper death and it seems that she is now starting to suffer from late-side effects.

Doing more than one thing at the time is more difficult than before. If people tell her something that consists of multiple bits of information, she has trouble remembering all of he bits as well as with putting it all together in to a comprehensive story when asked to recount the situation.

For someone who was working on a PhD before treatment started, this is hard to take. She is trying to get back into studying again but we have to write everything down on Post-It notes or she'll forget. Now having 15 Post-It notes makes her feel so despondent that she struggles with getting going with even the simplest of the outstanding tasks.

For me personally, it is just frustrating. In more ways than one. I am not a patient person so I will frequently lose patience with JD when she has once again managed to do only 1 small task in an entire day. This upset JD but also upsets me because I feel bad for not being more patient and understanding. I mean, how much is reasonable to expect of someone? Some days I get really annoyed that she has not done things I asked her to do. Or I find out she only told me half of something important. And then I really struggle with not being angry and annoyed. Most of the time I fail and make JD feel liek she failed.

I want to help but it is hard not to be patronising or treat her like a child ("Do you think you can do 2 of your 15 tasks today? Let's try to get 2 done and if you can do more that is great. And then tomorrow maybe another 2...."). However, she does want me to help her organise things. But does that mean it is OK for me to call her at lunchtime to see how she is doing and to gently remind her that she is supposed to try and get her 2 jobs of the day done? Is that too much like a parent, rather than a wife?

How do you know someone is 'just being lazy and unmotivated' like we all can be some days when we just cannot be bothered. How do you tell the difference from smoeone who says they have really tried but they were just distracted by the TV, the radio, the internet and whatever else distracted them?

Are JD's symptoms normal? How long will they last? Will it be permanent? How long before she can really be asked to take responsibility again for putting her life back on track by returning to her studies etc?

In many ways, we thought the treatment was the hardest part and that things would get better now. But right now, it seems that this is the most difficult part of it. This is the part where communicaiton is the most important thing or else a relationship can really suffer.

Update: Must clarify that '15 tasks' is a random,hypothetical number and not tasks I have set JD. They are all just general things she has on the go in her life. Re-ordering medication, picking up medication from pharmacy, write email to university tutor, write up meeting notes. etc. Not things she has to do per day! They also do not include things like the ironing, the shopping, laundry etc! I am no slave driver!!

23 February 2009

Not In My Back Yard!

See here the plans to build an electricity sub-station about 10 metres from my bedroom window. That is the final fucking straw. the site used to be a school but iis now being turned in to a Mental Hospital. No problem with that. It only got annoying when they started to patrol the site with dogs at night. The dogs bark at anything that moves. Not just intruders but also rabbits, foxes and moving tree branches and shadows. As a result of that, I now wake up at least 3 times every night.

And now they want to build the fucking electricity sub-station right underneath my window. Why there? I don't know but on the other side of the plot of land is a huge vast empty space and that site is next to an office block. So why not build it where it does not bother anyone? Could it be because that is next to a Council office? I don't know.

I am going to object to the plans but somehow I feel the decision has already been made. I mean, they would not start to build an entire new hospital without having sorted out electricity supply for it first so what is the point....

I will be moving soon I think. Fuck. I like where I live now.

21 February 2009

Gourmetten or Raclette?

When my parents came to visit me for the first time after I moved to England, I asked them to bring me a present, a Dutch Gourmet Set. Gourmetten (verb) is a tradition in Holland and everyone does it. I wanted to get myself a gourmet set in England but I could not find them anywhere. When I invited friends around to our house for an evening of Gourmetten, all of them told me they thought it was the most fabulous thing to do with friends and asked me where they could buy a Gourmet Set. I never knew the answer.

But what is it, I hear you ask. Well, it is kind of like Raclette (which is not the word we would use in Dutch, hence for years I thoguht I could not buy the Gourmet Set in England, only to find out I needed to look for a Raclette Set which is available at John Lewis!)

We all know the Swiss thing that is Raclette: melted cheese and bits of meat & bread to dip in to the melted cheese.

In Holland, we have given it a twist that has become THE most popular thing to do with friends and family around. The Dutch way is to use the top grill plate to grill meat & fish. The little pans at the bottom, traditionally used to melt the cheese that you then pour over the meat or fish, are used for side dishes. Like what, I hear you ask. Well, think of chopped onions, mushrooms, bacon lardons, eggs, spring onions, mini-potatoes etc. Everyone basically makes their own food in their own little pan and they can do whatever they want and make yummie or yukkie combinations.

Add a nice salad, some sauces, wine & bread and you basically make your own dinner. Great fun. In Holland, they make preparing all this even easier because at the supermarket or butcher, you simply buy a ready-made Gourmet Dish: a tray of meat such as chicken, hamburgers, steak, pork fillet etc, cut up in bite-sized pieces.

Recently, my folks visited again and since my Gourmet Set was broken, I asked them to bring me a new one. Clearly my mother thought you coudl not buy meat in England so she not only brought us a Gourmet Set, she also brought us a frozen Gourmet Tray (wrapped in tin foil to keep it cold on the plane). Bless her.

So next time you come to dinner at our house, you know what you'll get: Gourmetten. Pretty soon, one of my friends is getting married. Now that I know you call it Raclette in England, I can simply buy them a Raclette set as a present. Yay.

Strange though how you can buy the thing in England and yet none of my friends had ever heard of it and a few had asked me to get my parents to bring them one from Holland. Maybe I can start a trade in pre-cut Gourmet Dishes.

17 February 2009

Spotify is the dog's bollocks

The new addiction in the office (since this morning really): Spotify.

Spotify serves up instant, legal access to millions of tracks completely free of charge via an interface every bit as slick as iTunes. The difference is that you do not download the music. It is streamed via the internet but that is almost unnoticeable. There is no delay.

Its best feature is the shared playlists. This is brilliant for in the office here. One person has set up a shared play list and sent us all the URL for his playlist,. We can then simply drop our songs in the playlist and create a lovely variety of music during the day. t is great because it means no longer can one person take control of iTunes in the office for hours on end.

You can share your own playlists on the internet (check out Spotylist.com for lists from others), make them collaborative (or not) and post them online. So, say, you can share your playlist with your loved one at home and then both listen to the same musiic during the day from different places. All of it for FREE. All you get is a few adds played per hour but that is just like listening to the radio. Brilliant.

I am sure this was all available elsewhere before (Last.fm?) but I never used that.

I am LOVING this so much, it is the first thing I would even consider paying (a small fee) for if it was to become commercial.

09 February 2009


This weekend, JD finally plucked up the courage to have her hair cut off. It was a difficult decision that had been put off a few times already so I am proud she finally went. I think it looks a lot better now. Somehow, the long hair made her look more ill, in my opinion. Obviously, with half a head of hair, she still looks like she is obviously having some kind of problem but it somehow looks much better to me. And I love running my hands through short hair. There still are a few wispy bits on her head at the front but most of it is gone. She has left the hair on the back of her head, if anything because it is actually quite cold without hair! So tip from the top: don't have chemo or radiotherapy in the winter if you are going to lose your hair! It is cold!

Only 8 treatments to go. So far JD is doing great. None of the terrible tiredness we were warned about, no terrible headaches or anything. I guess it is not surprising that JD isn't too tired because she doesn't really do much during the day. That is not a bad thing! I just mean that if you have a very busy life with work and kids, you are going to notice much more that you are unable to do certain things. But if, like JD, most of your time is spent at home anyway, working on the sofa on a laptop, you are not spending a lot of energy anyway so it is not going to feel like you are using a lot more energy to do the same things you always do. I suppose in this case, that is a good thing! Yay for working on the sofa!

The only thing is perhaps that she is more forgetful and finds it hard to organise more than 1 thing at the same time. But apparently that is quite common with RT to the head and that should go away a few weeks after the end of treatment.

I am looking forward to the end of this. I am looking forward to things getting back to normal again. My bosses have been great in the past few months & weeks, giving me all the time I need to get to hospital and whatever else I need. It has made me a lot more stressed as I don't want to let my bosses down after them being supportive but I also need to be able to put JD first without feeling I then MUST go back to work in the evening to finish work off all the time. After all, my bosses knew I would need time and they offered me that time.

I am looking forward to hearing the radiotherapy has worked and the bastard tumour has stopped growing for good.

03 February 2009

Random Snowman

Last night, JD and I went out for a quick walk in the snow after dinner. And because we felt like it, we just built a snowman in a random garden. I mean, you can not have a garden and not have a snowman, right? So we just used all the snow in this person's front garden and built a rather ugly snowman. Then I rang the door bel and said through the intercom: "Hello. We have built you a snowman, hope you like it. Byeee!"

And then we left. Giggling. 30 minutes of fun. Go on. Do something funny today and make a stranger smile.

29 January 2009

Radiotherapy update

Hi all,

Just to let you know that the joint pain has gone. In the end I only had two sleepless nights with the painful knees and hips. I don't know what caused it other than 'steroids' but i've had my medication fiddled with and i'm feeling much better. Much less tired and much less bloated (although there are only two pairs of trousers that I can currently fit into - hurrah for elasticated waistbands!) So maybe I am still quite bloated and not realising it. Never mind. I'm sure that it will all disappear eventually. I do feel a little thinner since reducing my steroids. The good thing is that i'm not feeling as tired as I did last week. I'm sure that has something to do with the medication also. I haven't been having any of the mini-seizures which may have something to do with the medication adjustments also. Who can say? It's all a big mystery.

Anyhoo...the hair continues to fall out and the scalp is still hurting but I am at a friend's house and I can't start letting my hair fall out all over her nicely vacuumed carpet. I will put my nice new hat on instead. DutchCloggie hasn't stolen it yet, which is nice. She isn't a hat person (or particularly into wearing stripes).

I had a review yesterday and the nurse said that I was doing really well. If you are about to start radiotherapy I can thoroughly recommend going to the gym and getting fitter because it will help with the tiredness. I have found that I am able to maintain my usual schedule to a greater extent i.e. go for longer walks without being totally wiped out afterwards. But it's always nice to have a little nap when I get home. When isn't it nice to have a nap though?

I will leave you with a quite amusing story/picture (or at least I thought it was - no flaming for my poor sense of humour please - no injuries): Lorry found hanging out of ferry

27 January 2009


Perhaps this is not the place and platform so this post may vanish in a few hours/days but I am angry! Really angry. I mean like I-want-to walk-up-to-someone-grab-her-and-shake-her-around-seriously-whilst-shouting-expletives-at-her-kind of angry.

JD needs to be driven to radio therapy every day because she is not able to take public transport in case she has a seizure on her way to the hospital (this might mean she would miss treatment). And so I organised with my boss that I can take every afternoon off work after 3pm so we can drive to the hospital (45 minutes) and get JD zapped.

Next month, my boss asked me if I cold perhaps be at a film shoot for work. I said I would try to get someone else to drive JD to hospital and back. Surely a one-off should not be so hard to organise for someone right? After all, if you love someone and care for them.....

I remembered that JD's mother had said she would do anything to help. So I asked JD to call her mother and see if maybe she wold be prepared/able to drive to our house, pick JD up, take JD to hospital and then drop her off home again. Granted, this would be quite a drive for her mother as she lives about 90 minutes driving away from our house. But even so, you would think she would be able to do this for her daughter who is having treatment for a brain tumour. And remember, this is not tomorrow. No, this is more than a week from now.

I should have known the outcome. Nope. Can't do. Why? Well, because she has to teach some kids how to ride a horse. Yes, I understand that is what she does for a living but there is still plenty of time to try and rearrange some of these lessons right? After all, it is her daughter we are talking about. All she was asking was for her mother to help out for an afternoon. Nope. Too busy. Not even saying that she would try to re-arrange the lessons. Nope. Too busy.

Like she was too busy to talk to JD on the phone the other day when JD wanted to tell her about her hair loss. Too buy because she was 'making herself breakfast'. Like she was 'too busy' for the past 2 years (yes, TWO YEARS!) to visit us in our new flat. In the time my parents visited from Holland 3 times, JD's mother, from a hour driving away, visited exactly ZERO times.

I respect JD's wishes not to tell her mother exactly what I think of her extremely self-centered behaviour but it is getting harder and harder. I want to tell her to stop thinking the world revolves around her and that other people are not merely hangers-on to her life.

26 January 2009

Radiotherapy hair loss

JD has now started to lose her hair properly. Pulling it out is as addictive as popping bubble wrap plastic!

We were told it would only fall out where the radiotherapy beam hits her head and where it leaves her head again but unfortunately this seems to be almost her entire head. Hairloss was expected but not that it would most likely be permanent.

The booklet we were given did mention that hairloss might well be permanent when a high dosis of radiotherapy was given but we did not know that JD is indeed getting a 'radical dosis'. Only found this out the other day when I asked the nurses where exactly the hairloss would be. They showed me with JD on the table and he facial mask in place, just before the treatment.

Once we left the room, I casually mentioned that I had read the hair loss could be permanent in some cases. Would this be the case with JD? When all 4 of the radiotherapy-staff nodded their heads at the same time, I realised things were a bit different than we had assumed. They said JD is on a radical dosis because she is young and healthy and she can take the physical hit. Good. They told me the radical dosis is not related to how 'bad' the tumour is. Good. But they did say to expect the hairloss to be more or less permanent. They told us: If you assume it will be forever, then it can only be better if there is some growth again later on. Rather than expecting it to grow back and then not seeing any new hair!

Hmmm....that puts the Wig Question in a different perspective I reckon.

22 January 2009

There goes the hair...

And just like that, from one day to the next, the hair started to come out. JD has been pulling at it for a few days, wondering when she would start losing it. But nothing. And then suddenly last night she grabbed some hair and it just came off. Needless to say we spent the rest of the evening plucking at the hair until nothing more would come out. So far it is only in a single spot, where one of the beams goes in. it is the size of a 50p coin. I am sure over the next few days, more hair will start to fall out in the other 5 places where the beams hit her head (3 beams in total and she'll lose hair both where the beam goes in and where it comes out again).

I don't think we are too upset (yet). We were expecting this to happen any time now so now we can just get on with it. I shall just have to give her extra kisses on her bold patches ot protect them from evil!

15 January 2009

Radiotherapy side effects

I woke up this morning with a nasty headache and haven't been able to do what I wanted to do. Needless to say this has made me miserable and has made me eat more food. Bad JD - no biscuit! Or rather, no more biscuits...We don't buy biscuits or chocolates anymore as i'll just scoff them as I have no willpower. I have put on (what I feel) is a vast amount of weight but the nurse said to me yesterday that it will fall off as I cut down on the steroids. I have permission to do this now and increase the anti-epeleptic drugs to stop the weird left hand side mini-seizures I seem to be suffering from when I stand up. Very odd. Still have the headache but I think that a paracetamol or two and a cup of tea might help the issue. Speak later.

13 January 2009

Radiotherapy Update

Radiotherapy has been progressing nicely. I had Friday off as the machine was broken (eeek) so I will have another appointment at the end of the six weeks. No side effects yet apart from a headache (which if I have to be honest isn't that bad at the moment). No hair loss yet but apparently that starts after the second week so we'll see...

The fainting is continuing but I have an appointment to see the nurse specialist about it. I have had head-rush experiences when I stand up with shaking down my left hand side. When I have the shaking I can't grip and will drop whatever i'm holding in my left hand. The nurse suggested it might be something to do with the steroids (everything has something to do with steroids it seems) and maybe my levels can be reviewed as I feel that I'm taking rather a lot. Again, we'll see...

I am also in the process of sending my driving licence back to the DVLA. With all the fainting and lack of grip I don't think it is a good idea to be charging up and down the motorway in my condition - and neither do the doctor and nurse. Dutchcloggie has an arrangement with work so that she can take me to treatment and back, which is very nice indeed. Anyone else have experience with the DVLA?

11 January 2009

Faintly concerned...

JD did not get any radiotherapy on Friday because the machine was broken. they told us they would simply add the missed treatment at the end of the whole procedure. That way she would get the 30 required treatments. Intersting how that seems to work like that.

So far there are no real side effects yet apart frmo the first real headache this morning. Then again, that might just be a 'normal' headache. How can you tell?

The 'fainting' spells have increased quite a bit in the past few weeks. So much so that the nurse thought it would be a good idea for JD to have a bloodtest to see if there was any indication of a lack of Glucose in the blood that could cause it. I personally don't think that is related much but we'll see. They are not really fainting spells anyway. More like a 30 second episode of feeling faint, trembling on her left side and an inability to speak. It happens ONLY when she gets up but not every time she gets up. There is no pattern that we can discover to help put a finger on why it is happening.

A few minutes ago, she had another spell. Got up off the sofa and within 10 seconds of getting up, she started to tremble on the left side and her eyes went all funny. I got up and wrapped my arms aruond her to support her. She started shaking more and I asked her if she was OK or if she wanted to sit down. Unable to speak, she merely groaned whilst going limp in my arms (but still able to remain standing with my help). Then it was over and I sat her down for a minute. After that, things just got back to normal in 2 minutes. Weird. And scary. For JD more so than me because what the hell is going on in the brain when that happens? I would be scared to death!

Anyway, it does prove once more that it IS beter that JD does not go to the Hospital on public transport as the plan was op=riginally. I mean, what if this happens on the train on the street and someone calls an ambulance or she falls over and misses a treatment because she misses a bus or train?

And so I drive her every day. I kind of like it that way. So far, we have been shopping and visited friends on our way home after the treatment. And we have nice chats in the car.

I think I am doing OK with all this. Easy for me to deal with it as it is not my brain being affected. I think that once JD will start feeling really ill from the treatment, I will become more angry and emotional. At the moment, she's not really ill from it and so the treatment is just part of a routine, not so much part of an illness. But having to see her lose her hair or be sick with headaches and nausea will be hard for me to take.

It is hard to describe but this whole thing is feeling strangely 'exciting' to me. Not in a 'cool!' kind of way though. As I have the attention span of an nat, this whole thing is never boring and always requires me to be alert and pay attention to everything going on around me. It keeps me on my toes. Is that weird? I mean, when I was young and insecure in school, I used to wish for some kind of illness or injury (nothing too serious of course, something that required a plaster and some crutches for a few weeks. Don't laugh, I KNOW I am not the only one with such thoguhts when I was young.) that would mean my peers would have to be interested and nice to me. JD says she had the same. I guess this is punishment for ever thinking like that. And yet, in a strange sad way, it is kind of 'exciting' to see so many people interested in myself and JD. I know I don't need to be reminded that I am a nice person that people care about and yet, it makes me feel good that friends and family want to know how things are going. It also makes me smile that it is sometimes a useful thing to use when we want to get somethign done a bit sooner or with a little more sympathy (see my story about getting my boiler fixed last month....)

Is that sad and selfish? I don't mean it to sound like that and obviously I do not mean that it is cool. I guess you can compare this 'excitement' with adrenaline: that flows both when you are having fun and when you are scared. I guess you can be 'excited' in anticipation of both good and bad things.

I guess I am not explaining it very well and I now sound like a freak.

Update: Some clarification is required I feel, or else people might think I am trying to say that I like the attention I am getting because of JD. That is not what I mean.

I have ADHD so I have a very limited attention span for anything and things bore me greatly really soon. And with this illness, there is something happening all the time, something new going on, something new to organise, some new symptom to deal with, some new doctor's visit to digest, some new emotion to learn to deal with. I guess that is what I mean: it keeps my brain busy and focused on the things that need to be done. And especially for people with ADHD, that is something you don't get to feel very often. So perhaps that is what I mean. I don't know really.

06 January 2009

Second radiation treatment

Off to the next radiation treatment shortly. I've had a productive morning putting all of my appointments into the computer and letting my fingers go cold. It's somewhere between 0 and -6 today apparently. Cracking. Dutchcloggie bought me a nice blanket for Christmas (with sleeves - image search for 'Slanket' if you're interested) but I haven't managed to take it out of its bag this morning. I don't know why I'm bitching about being cold when I have a vest, shirt, jumper AND available blanket and heating. COME ON JD - SORT IT OUT!!!!!

There's only 30 radiation sessions and 3 review sessions so it's not all that bad. I woke up with a headache this morning but I'm not sure how much of that was my brain assuming that because I had been zapped yesterday that I should have a headache today. Silly brain. Maybe it is a caffeine deficiency? Coffee time!!!

Has anyone else cut out coffee and tea whilst taking steroids? I thought about it but swiftly dismissed the idea as I enjoy my coffee too much. Anyone have any thoughts?