17 December 2010

Making decisions for JD

Caring for someone can be great fun. Especially when they are as witty and sweet as JD. But although she is a lot better than she used to be, it is still like living with a big child in some ways. Asking her opinion one advice on something is pointless as she will change her answer every time you ask. So I basically have to weigh up my own arguments when making a decision as well as well as think: if JD could decide, what would she do? And that can be a very lonely and difficult thing to do. It frequently keeps me awake at night. Did indo the right thing?

Most serious example is this.

JD used to be treated in the university hospital in Coventry because that is where we used to live when all this started years ago. When JD was so poorly, I thought it made more sense to more her treatment to our local hospital. After all, we had to drive for more than an hour to the appointments just to pick up a bag of chemotherapy. With JD being so I'll, this seemed counter productive.

The oncologist said that would not be a problem so this has now been done and Jane is seeing the oncologist in Northampton on monday. But... I remember being told a few years ago that Northampton only pays for a limited number of chemo cycles. In Coventry, there was no limit. So what if this decision I have made leads to JD being denied her chemo in a few months? Did I effectively sign her death warrant by moving her treatment? Is that the price she will have to pay for me giving up on her survival so quickly back in October?

It is so difficult to have to make these massive decisions on my own with nobody to talk things through in detail. I know there are friends and our parents but it is not the same as being able to discuss it with someone who is directly affected by it. Someone who can discuss the pros and cons of these things.

I guess I miss having JD to talk to about the important decisions in our lives...

For now, in will just enjoy the Christmas we get together. I am more hopeful now that it does not have to be her last at all!

07 December 2010

And so it goes on...

It seems that the chemotherapy is really working at the moment. Every day JD is better and doing things she was unable to do before. Functions she lost are coming back. It is amazing to watch. The latest thing was that I sat in the living room and suddenly the door opened. JD had gotten out of bed from her afternoon nap, dressed herself and said: I just came to see where you were. I nearly burst in to tears with joy.

It is hard to avoid tellning JD every time she does something she couldn't do only days ago. But there you have it.

I don't believe the chemo will cure her. I certainly believe things are going much better now and, like with the previous batch of chemotherapy, the first few months are certainly positive. We have been told in no uncertain terms that the treatment is palliative but that the chemo can still shrink the tumour. It seems to me that is exactly what is happening at the moment. Which means we have been given a lot more time. How much time I don't know.

The next scan in February will be a really interesting one. I can not wait to se what it will show. What has caused this sudden, massive improvement? The improvements have been as dramatic as the initial deterioration a few months ago.

In a strange way, I somehow feel rather sheepish now about telling people JD was virtually at death's door a few months ago. She was, according to the nurses, the hospice doctor and the oncology specalist nurse. Only the oncologist himself refused to be drawn on it. Maybe in the end he was right.

Anyway, I am extremely happy with how things are going as JD and I are able to go out and do things together.

Only one problem: she is now aware of her limitations and is refusing to accept them. God for her but she has said she wants to go skiing...

19 November 2010

Getting better

I don't believe in miracles. I believe in doctors being wrong. To make it clear, JD is not cured and she will not be cured ever. However, the improvement in JD in the past few weeks has been remarkable. Actually, she has been pretty stable for the past 3 weeks so I guess I should say the improvement since she has left the hospice.

It is difficult to describe what is going on in her head though. Ask her a questions and she'll answer you one thing. Ask it again 3 minutes later and she'll say something different. She tends to repeat or incorporate things other people have said a few moments ago even if they do not relate to the conversation topic she is talking about.

For example, my mother gave JD a pair of PJs for her birthday (which is in 2 weeks). Also, we are going away this weekend to Wales for 3 days. This morning the carers asked JD who gave her the PJs. JD answered she did not know but that they were a birthday present. The carers then asked what was special about this weekend. To which JD replied: It's my birthday.

If you don't know JD, it will make you think she is actually having a really normal conversation with you and so she will appear better than she actually is. Only if you have been present the whole time will you know she is actually mixing things and events up in her head.

However, things are still MUCH better than they were. Yes the tumour is growing and has made JD lose cognitive functions. She can not be on her own at home so it was god that I gave up my job. But it is more or less possible to have a conversation with her now, providing the answers can be Yes or No. She can 'help' me with doing the dishes and making cups of tea as long as I stand next to her to avoid 30 teaspoons of sugar in the mug.

So life has definitely improved and I now no longer fear she might not make it until Christmas. In fact, she could live for a good few more months into the next year. After all, the chemotherapy can shrink the tumour, just like the previous chemo did. Of course it will eventually fail but it seems that for now the chemo has stopped the rapid decline.

The steroids have reduced the swelling of healthy tissue around the tumour which means there is a little more space in her head again, which means less pressure on vital brain functions.

We have recently started to go swimming in the local pool. JD can no longer swim. She has forgotten how to do it and she does not use her left side) but with the use of one of those pool noodles, we have a great time in the water. Usually about 30 minutes and then off home for a sleep. A great way to keep busy and it gets us out of the house.

In the mean time, she still loves visitors s oif you want to come over, give us a shout.

30 October 2010

To care or not to care?

When JD was in the hospice, she was assessed for home care. Carers that come to our house and help JD getting out of bed, washed, dressed etc. All things non-medical. All things I can really do myself.

When they did the assessment, JD was really poorly and 2 people were needed to roll her over in the bed, wash her etc. So she was assigned 2 carers coming to our house, 3 times per day. An hour in the morning to get her up, half an hour at lunch time and half an hour in the evening to put her in bed.

After having JD home for just a few days, I realised she did not need the carers that much. She was by then able to walk again with simple hand-holding and I felt the carers as more of a burden than a help. I mean, there was nothing for them to do and due to the schedule, they came to put her in bed at 7.30pm! Far too early, considering she does not get out of bed until 10.30!

So I cancelled the two later visits and just kept the carers for in the morning. But even that is really not needed. I can do it all myself easily. And yet, people keep telling me not to cancel the carers completely. I would much rather cancel them and when the time comes, re-book them when I can no longer do things myself.

The idea is to relive some stress for me. But I actually find it quite stressful to have to take their schedule in to account. JD has a hospital bed but most of the time, she sleeps with me in our double bed. When we wake up, around 8, I put her in her hospital bed and I sort out the catheter etc. Then I have a shower and make JD breakfast. She eats brekkie whilst watching TV, waiting for the carers to arrive.

The carers are 2 young girls, barely 20. They mean well and they are really kind with JD. But you can tell they lack a certain life experience. For example, it took them quite a while before they started cleaning up the bathroom after they finished. Or making the bed. They do it now so that is a bit better. I found myself being annoyed at having to clear up after they had been. What is the point of having them if I could do it myself in the some space of time AND leave my house tidy afterwards?

Apparently the idea is that I can sleep late and just watch tv when they are here. But I am just not like that. So I feel a certain pressure to be showered and dressed before they arrive. After all, I can not really leave JD alone for long when there is nobody else in the house so I can't have my shower after JD is up and dressed.

I am not explaining it very well I think. I guess I am just struggling to let go of some of the freedom of being in complete charge of my own time and my own house.

I'll learn.

On a positive note: things seem to be going quite well with JD at the moment. It is difficult to explain what is going better and what is going worse. She seems more alert when asking simple questions such as: "do you want a drink" and "would you like to go out" but other things she is just not responding at all. Physically things are going quite well I think. She can walk half the way to the shops without falling over (much) so that is good. We went to the rugby again today and it seemed she had a good time, even if she did not seem to watch the actual rugby much :-) She was distracted by spectators in Halloween costumes.

I am now thinking it is probably not going to be a matter of weeks before she dies. When she was in the hospice and so poorly, I really could not see her make it to Christmas but at the moment, I think she could be like this for a while.

Which brings a whole load of other long-term issues, mainly financial ones. I get £53 a week in carer's allowance, JD gets £120 a week in Disability Living Allowance and that is all the income we are entitled to. How does the government think we can survive on that? I mean, I gave up my job to care for JD, which is surely cheaper than a nursing home. And yet, I get no unemployment benefits or anything. I guess we'll cross that bridge when we get there.

25 October 2010

A long overdue catch up

Apologies for not having posted an update here for nearly a month. We have moved house and there is no internet in the new flat, no mobile phone signal and the mobile internet dongle I bought to tie us over has no signal either, unless I walk out into the front garden (so that is where I am now whilst JD is having a nap)

A lot has happened in the past month. JD went into the Cynthia Spencer Hospice whilst we were moving house. Initially it was going to be only for a few days. Unfortunately, JD picked up a bladder infection after a few days, due to having been given a catheter. This made her extremely poorly and so she was not able to leave the hospice until this cleared up. Further more, the doctors wanted to make an assessment of JD’s care needs so that I could be given the right amount of support to care for JD at home.

The doctors at the Hospice are in charge of symptom control but the doctors in the Coventry & Warwickshire University Hospital are still in charge of her cancer treatment. And the Oncologist wanted to try giving JD a VERY high dose of steroids to see if this would reduce any oedema (swelling) of the brain and make her a bit more alert again. Combined with the infection, this completely knocked her out. She was so poorly that I decided, together with JD’s mother and the doctors at the hospice that there was no point in continuing with the chemotherapy regime as this seemed to have no benefits at all, other than trying to prolong life. And the way JD was, it seemed it would be a matter of weeks, rather than months anyway.

So the chemo was cancelled.

But then things started to pick up again. JD became more alert, more talkative. Or rather, more responsive. It seems that once the side effects of the massive dose of steroids had worn off, they actually are doing her some good. She is still confused and unable to hold a conversation but generally she will answer questions if they are not too complicated and do not involve describing emotions or actions etc.

After a particularly lucid conversation I had with JD, she said she wanted to continue with the chemotherapy. So I informed the doctors of this. Now she will go to Coventry hospital once more for a final appointment. After that, her treatment and monitoring will be moved to the local hospital here. It saves us a 3 hour trip every 6 weeks.

She can come out with brilliant one-liners and when she laughs when people make jokes, it is wonderful to see.
In the end, JD was in the Hospice for about 2 weeks. I missed her terribly but it was good to have that time to settle in to the new flat. I must thank all the friends who offered help. Some by coming around with manpower, others came with food and yet others kept JD company in the hospice whilst I was running around organising things.

Now that JD is home, we have been given all kinds of equipment. A hospital bed, a commode, a bath lift, an electric rise/recliner chair (which JD plays with ALL.THE.TIME). Our sofa has been raised, a ramp installed for the wheelchair, and carers come in every day to get JD showered and dressed.

More later about these carers and the point of them and district nurses and GPs.

28 September 2010

Hospice respite

A self-indulging start of this post. Because I want to.
Last night I had the freight of my life. I thought JD was about to pass away. I had a panic attack because I could not even begin to oversee the consequences if she were to pass away whilst we are in between houses and house moves. Selfish, I know. But you see, the thing is, I can deal with the caring for JD. But organising everything else in our lives is proving incredibly hard. I am constantly feeling overwhelmed by the things I need to do and organise.

Anyway, I rang the nurse in the morning and later on, the MacMillan nurse came to have a chat with us. She explained the results of the last scan in more details. In 2 months, the tumour has gone from being stable to being in her right frontal lobe, left frontal lobe, brain stem, midbrain and cerebellum.

The oncologist at the hospital still wants to try chemo treatment and an insanely high dose of steroids (32mg per DAY!). The MacMillan nurse said she was uncomfortable prescribing such a ludicrously high dose and we agreed on a lower dose. Steroids reduce oedema in the brain. If there IS any, reducing this swelling of healthy brain tissue might result in JD being more alert, at least for a while.

I explained that we are moving house and that the idea of having to move house around JD is incredibly stressful. The nurse then suggested maybe JD could go into the local hospice for a few days. They don't normally do respite care but we could try and swing it so that they would take her in to make an assessment of her care needs and monitor her for a few days whilst she is taking the steroids again. And totally by accident, these days would be exactly the days we move house.


I am mainly happy about this. But I am also aware that JD's stay at the hospice is the first step towards the end. She is eventually going to die there (unless she dies at home). Even if this time she is coming home again after a few days. I tried to explain to JD what was going to happen over the next few days and she seems to understand it. But she is not able to show much emotion so I can not tell how upset she is.

All I hope for now is that we can have a few more nice weeks together in the new flat.

By the way: LOADS of people want to come & visit. There may simply not be enough time for everyone to visit before JD passes away. 2 visitors per day is max as she will sleep more and more. I am sorry if it is going to upset people but I am going to have to be quite ruthless. Please do not be offended by this.

24 September 2010

A matter of months...

Today the Neuro-oncology Clinical Nurse gave me more details on what the last scan showed and it was bad. Grown from right frontal lobe into left frontal lobe, into midbrain, into brainstem and cerebellum. She once again confirmed that it will be a matter of a few months before JD will die.

She also asked if JD was still given chemotherapy treatment because maybe the discomfort she gets from that is just not worth it. Obviously the doctors are trying to do all they can but there is no cure and no chance of living much longer. So why go through the hassle of taking pills and feeling sick for 10 days in a row when there is very little point to it?

This is of course not my decision to make but JD does not seem able to take this this all in and decide about it.

It breaks my heart knowing that her personality is still intact (I know this because the laughs at jokes & at herself sometimes) but that she is fast losing the ability to communicate & walk.

Moving house

We moved in to a new house 2 months ago, before things went downhill. Maybe looking back, you could say that was a stupid move. Naive to think things were not going to change. But it did not cross our minds that things could go downhill so quickly.

Now, JD can no longer get up the stairs very well and it is only a matter of weeks before she won't be able to at all. This would be a major problem as the bathroom & bedrooms are of course upstairs. So after some consulting with the MacMillan nurses, I decided to move house again as soon as possible. This morning, we went to take a look at a flat and it is wonderful. A massive ground floor flat with a huge bedroom with bay windows and a tiny tiny second bedroom (I don't think it even fits a single bed!). Small bathroom but very big open plan kitchen and lounge, big sliding doors to a small patio and parking right around the back of the house. I would have considered moving in there even if JD had not been ill.

The letting agency were fantastic and helpful and after I explained the situation, they waived the administration fee normally involved in moving house. The only thing I need to pay is a £250 release fee from our current house because we have only been here for 2 of the 6 months we signed for.

Although JD seems overwhelmed by the speed of this, she does seem to understand why it is important. Still, it upsets me that I am making all these decisions for her. I am so afraid of treating her like a child. I want her to feel included & valued as much as possible.

But at least once we have moved in, JD can stay home with me until the very end or until she needs to go into a hospice. That makes me feel better. If only a little bit.

21 September 2010

Not so good

I have not posted here in a long while. But with good reason. Things are not going well with JD. Tumour is back and chemo no longer works. Doctor says it's 'a matter of months' so God knows how long or short that is going to be.

As JD has so many friends that want to stay informed about how she is doing, I have created a blog: http://bouncybean.blogspot.com. I'll post there regularly and I'll try and cross-post things here frmo that blog. Other than that, there won't be much else for me to talk about for a long time.

20 September 2010

How does she feel?

JD is easily distracted these days. Or, to put it better, all she is is distracted. All the time. Ask her a question and before she is able to process the question and formulate an answer, she has forgotten the question or is studying the buttons on your shirt instead.

On Sunday, we were at a friend's house and JD stood very still, tracing patterns on the wallpaper with her fingers over and over again. She seemed really locked in by the whole thing. The wallpaper had shiny textures, matt textures and a slight relief. Our friend mentioned that various drunk and stoned people had in the past also been fascinated by that wallpaper.

A little later, I got a message from R. She had a thought about JD's fascination with the wallpaper earlier that day. I had mentioned in the past that JD seems to stare at running water for a long time. Maybe because she has lost track of what she is supposed to be doing (i.e. wash her hands) but it might also be that she is simply entranced by the movement and different ways light reflects in the water. R. remarked that perhaps JD is actually experiencing a heightened sensory/visual experience that is different or even heightened compared to those around her.

I find it a really comforting idea that this might be the case. JD is virtually unable to express her emotions (eventhough I am convinced she has them) as the process of putting her thoughts in to words seems to be extremely difficult and about 10% of the way through, she has forgotten what the question was. So the idea that she may be enjoying things full stop is a rather nice one.

So inspired by that thought, I gave her a piece of paper, a hole punch and some crayons and she was happily busy for 30 minutes. Not bad at all for a first time.

Perhaps I'll buy her a kaleidoscope. Pretty patterns and geometric shapes.

19 September 2010

BouncyBean is not well

Hi there. If you are reading this, it means you are interested in how JD is doing. It means a lot that people care. However, updating everyone via Facebook, Twitter and email takes a lot of time and so hopefully this blog will make things a bit easier. Feel free to send this link to everyone who you think it a friend of JD. It will save me time. I am not a great writer and some things on this blog may bore you. But I will try to be truthful whilst also making sure I post nothing here that JD would not approve of. If at all possible, I will try to get JD to dictate some of her own stuff here as well. But that won't be often...

So let me begin at the beginning...

JD has had brain tumour in her right frontal lobe since 2005. It is an Astrocytoma for those who want to know. First they removed part of in in 2005. It then came back in 2008 and radio therapy and chemotherapy have followed since. The radiotherapy made things actually worse but the chemotherapy, a drug called Temozolamide, kept the tumour stable for 14 months.

In June 2010, I started to notice JD's concentration was getting worse and her ability to multi-task and plan things was slowly deteriorating. We were arguing lots because she simply did not do the simplest things people do together in a household: clean, cook, share their lives, share experiences etc. The doctors put this down to late side effects from the radiotherapy and an MRI scan in June showed no marked increase in tumour activity.

However, in the two months that followed, JD rapidly became worse. Her short term memory is gone more or less, she is unable to complete simple tasks as she is almost immideately distracted by everything, and, most upsetting, she seems unable to access and express her emotions. So she rarely smiles and rarely shows any signs of any emotion at all.

I asked for an urgent MRI in September and last Wednesday we got the devastating news that the tumour is indeed growing again. It has now reached the brain stem and the cerebellum.

The JD I married in 2006 is gone, or rather, not available, and it went so fast that we could not do anything about it.

JD is now taking a nwe type of chemotherapy, pro-carbazine and the aim is to keep the growth to a minimum.

But there is no hope of long term survival.

The tumour will kill JD and the prognosis is in terms of months, not years.

JD can not be home alone anymore so if you want to come and say hello and visit, please let me know as JD LOVES visitors, even if she does not say much.

21 July 2010

Invocal has left the building

Less than a year after I got involved with Invocal, the band played their last gig ever for a packed Labour Club in Northampton on Saturday. I know the obvious suggestion is that I have something to do with that but I am quite sure it is not my fault :-)

Helen is going traveling and Bee is going to University to become a qualified teacher...

After announcing the end of the band, back in April, no more gigs had been booked so after a long period of not playing, they suddenly had 2 gigs to rehearse for: 10th July in Wellingborough and a week later, their Final (over)Act in The Labour Club in Northampton.

The gig was sold out within weeks so about 100 very lucky and loyal Invocal fans turned up at 7.45, ready for a night full of fun and sadness.

The band was truly awesome and the set consisted of old and new material with Surprise Guest Sarah Moloney (who left the band 2 years ago) joining in to sing the older material. The whole night was absolutely fantastic, the audience was great, there was singing, heckling, and, at the end, a tiny hint of a tear.

For my part, I can only say I feel really privileged to have been, a brief, part of the Invocal entourage. A truly talented group of women but also just lovely people. I have learned an awful lot and met some wonderful people.

But enough sadness! Rosie & Rachel, the two remaining band members, are already working hard on their new act which will be launched in the autumn this year. Keep an eye out for that! I'll still be involved in some way. Manager? Marketing? PR? Sound stuff? Personal Assistant to Ms Swayne & Dr Duncan? No idea just yet.

In the mean time, here is some lovely Invocal music to keep you occupied.

<a href="http://invocal.bandcamp.com/album/strange-sugar">Bubblewrap by Invocal</a>

16 June 2010

Hup Holland: FIFA World Cup South Africa 2010

As a Dutch ex-pat in England, I miss The Netherlands most when there is a big sporting event on. Surrounded by English flags, I feel some strange need to make it clear I am not English. So I asked my parents to send me some Dutch stuff to decorate my house with.

My dad is a star and sent me some orange car flags, a big flag and some bunting. I put the flag on my car, am about to put one on my bike and I decorated the outside of my house with the bunting.

I am READY for the World Cup now. Bring it on.

10 June 2010

Coming out as impulsive. An ADHD perspective

I'm impulsive. Yes, I realise this may come as a shock to some of you but there it is. I've said it. Impulsiveness is a big part of ADHD and I have landed myself in trouble because of it many times. So, I decided to make a Good/Bad list of things I do due to impulsiveness.

In fact, I might actually write a series of totally self-indulgent blogs about ADHD, what it does and why I (and many other with ADHD) are generally weird, nasty, rude, friendly, enthusiastic, impulsive people.
Just to help me understand why I do things. And maybe, if you read this, it helps you understand me too.

Saying things before thinking them through: the most obvious ADHD thing.

Quite often I will get a thought in the middle of a conversation and I immediately voice that thought. It can be a creative idea or an opinion or a sudden understanding (or presumption of understanding) about parts of the conversation.

Most people are able to wait for the other person to finish talking before they voice their ideas. I frequently am not. Most people are able to think a thought through before voicing it. I frequently am not. Most people are able to wait to hear the full story before blurting out a solution. I frequently am not.

It is not because I am rude, don't care about other people's opinions or like the sound of my own voice. It is genuine enthusiasm, a willingness to offer solutions, a desire to help.

So, what are the good and bad sides of this?

- My ideas are usually not held back by second thoughts such as: is this possible, should we be doing this, what will others think. It is a good thing because a lot of ideas are killed before they are voiced because we run thought them in our head and dismiss them before having them out in the open. With me, I blurt out the idea and then everyone starts thinking about it. A lot of the time it turns out it is a silly idea. But other times, people think: That's a wacky idea but actually quite good.

- It can cut conversation time short when I say the correct thing. Saves time :-)

- It shows I am eager to participate

- It shows I care about the subject and/or the person I am talking to

- Most importantly, I can come across as deliberately rude (as opposed to accidentally) due to interrupting people or saying inappropriate things when other people think I should bite my tongue; offering a solution to EVERYTHING even when I should just be listening without speaking.

- It can make me look rather weird and far too eager when immediately latching on to someone else's idea and running with it.

- People might think I am far too enthusiastic about stuff they only mentioned half-heartedly as my mind starts racing with ideas they are not ready for yet. Or they have some un-finished ideas and I take them and run with their ideas, not always realising I am just supposed to say: great idea, let me know when you are ready to discuss it further.

- It can be confusing for people when I say something and then say: no, that's not quite what I meant and then I re-word my previous idea/statement and basically let the thoughts form AS THEY COME OUT OF MY MOUTH instead of thinking them through, making sure I say exactly what I want to say. So it may take me 3 or for repeated attempts to finally say what I really wanted to say. And how do you then convince people that they should ignore those things you said before?
Extreme example:
1) "That is one ugly dress you are wearing".
2) "Actually, I don't mean that. I don't like it at all but that doesn't mean it IS awful"
3) "No, I mean to say: it is not my style but I have to admit it looks good on you. Please ignore that I said it was ugly and awful at first. It's not so bad when I look at it a bit longer..."

And so on and so on. No malice meant and, to be honest, the same thoughts that go through everyone else's mind before they open their mouth. Just that I have these thoughts in real time.

So which one wins? Good or bad?

With people who are already my friends, people who understand and trust me, the good side most certainly wins. But with people I don't know so well yet, or with people who are insecure themselves, it is most definitely a bad thing.

Solution: surround myself with confident people who are not upset hen I blurt out something stupid. Or get my friends to say: Do you want to think about that one again and then maybe repeat your idea once it has formed properly in your mind?

08 June 2010

Wychood Festival 2010 - The Round Up

So,what was my weekend at the Wychwood Festival like? I loved it! I was sad to have to miss The Levellers on Friday night as I was only able to make it down to the festival on Saturday morning.

When I arrived I was surprised at the size of the festival. I thought it would be a bigger festival on a smaller area. Maybe because the only comparison I have is the V Festival (huge festival on huge site) and the Cambridge Folk Festival (massive in name and v. busy but on a very small site).

The Cheltenham Racecourse is massive so having the campsites inside the racecourse was a great idea. It meant camping was far away enough from the event to be relatively quiet and yet close enough to still feel really in the middle of a big party.

The campsite offers 'regular' camping, a family camping and a 'quiet area' for people, like me, who come for the music and social atmosphere but who, once in the tent, really just want to sleep and not be kept awake by people with different ideas. Unfortunately I accidentally put my tent up in the Family area so instead of silence, I was surrounded by little kids screaming. Oh well, my fault.

I like the idea that parents can take their kids to a festival and feel safe about taking them into the 'arena'.

In front of the Main Stage, the whole thing felt more like a Sunday in Hyde Park than a festival. I mean that in a good way; at no point was it too crowded, were people pushing or rude or inconsiderate. People with chairs & picnic kit were as welcome as people who just wanted to stand & dance.

So, the atmosphere was lovely. If you are not sure about going to a festival and you want to see what it is all about, the Wychwood is the one to start with.

Not least because there is so much to do, other than sit in front of the main stage.
And this brings me to the other great thing about Wychwood. When I went to the Cambridge Folk Festival last year, I only knew a handful of the acts of the line up. I did not like all the stuff that was on but there was precious little else to do for those moments that I was not interested in the music. There were some shops and a smaller tent but that was kind of all.

Wychwood however offers a wealth of things to do, both for kids and adults. There was a fantastic workshop for Samba drumming. about 6 or 7 throughout the festival so everyone had a chance to participate. Amazing to see about 60 people, men, women, children, most with no musical experience, get together and learn how to play like a true Brazilian drum band. It brought tears to my eyes every time.

For those who liked things a little more quiet, there were ukulele workshops. Or a literary tent. Or a medieval storyteller who spun some great yarns that kept adults & children glued to their seats. I certainly did not feel too old to sit down on one of the tiny chairs and listen to him for about half an hour.

The BBC Introducing had their own stage with new upcoming acts and comedy later in the evening, there was a cinema, dance workshops for kids, circus equipment, juggling for kids & adults, the list is endless.

All festivals have a slight hint of Hippie and at Wychwood, there were palm readers, homeopathic remedies, chines massage, scalp massage and, my personal favourite, a travelling osteopath. I had been meaning to make an appointment at home to sort my back out so Wychwood gave me the chance to have it done right there and then. And after a night on a thin mat in my tent, a good cracking of the spine was exactly what I needed.

All in all, the festival just felt like a Village Fete on a grand scale and without the grannies baking cakes. Lovely Pimm's stand and with Waitrose as the new main sponsor, there were even posh cocktails to drink with the (rather expensive) food for sale.

As a Sound Engineer In Training, I took the opportunity to chat to the sound engineers and they allowed me behind the desk to observe them at work and they explained loads of stuff to me. An unexpected but very welcome addition to my weekend.

I am definitely going again next year and I would urge anyone who is a festival virgin to go as well.

Oh. Nearly forgot. There was music as well!

What did I really like? Martha Tilston. Piney Gir and the Country Road Show and my personal highlight: The South (formally The Beautiful South).

Thank you to Wychwood Festival for giving me the chance to experience your lovely festival. I'll be back next year!

06 June 2010

Wychwood Festival 2010 (Part 2)

Last night's comedy in the BBC Introducing tent was funny and I wish I could have stayed longer but the trek to the toilets was so long that when I was halfway at the campsite for a wee, I decided I might as well go to sleep. So I was in bed by 11.30, stone cold sober, ready for a snooze.

Unfortunately the people in the tent next to me had other ideas. They played music (Stevie Wonder for crying out loud) late into the night. At about 1am, I got out of my tent and asked them in the nicest possible way if they would please turn the music off since it was late and this was the Quiet Area of the campsite. They gave me dirty looks, commented on my thumb ring ("I like your thumb ring.. (thanks)...NOT". Oh hahaha) and were basically rude to me. As I turned around to go back to my tent, I heard them saying to each other:" That was a lesbian, I'm sure. That's bad being a lesbian" and other rude stuff. Now that REALLY made me angry. I turned around and, kind of, shouted at them they were rude fuckers and that turning the music down had nothing to do with being a lesbian or not. Needless to say they turned the music up and sang even louder.

I felt like a lost the argument by swearing so this morning, I walked up to their tent and said: "My apologies for swearing last night. I don't mind you calling ME names but I hope that if your kids ever tell you there are gay, you don't call them fucking dykes and dirty lesbians. You should be a better than that."

As I walked away, I felt a nice sense of moral superiority. So here is the proof: having kids and going to a family friendly festival does NOT mean you are a nice person. If you are an arsehole, you will still be an arsehole.

And maybe it really is true: swearing does not make you feel any better.

05 June 2010

Wychwood Festival (part 1)

So here I am at the Wychwood Festival at the Chelenham Racecours. Just had a nice cup of tea and my little (borrowed) netbook is getting its first proper test run.

The Wychwood Festival is really one of the loveliest festivals I have been to so far. It is, of course, children, wheelchair, eco, fair trade and human rights friendly as festivals all claim to be these days in an attempt to maintain the traditional hippie-like mood of festivals.

The campsite is lovedly and not so bloody loud as with other festivals. The music s quirky and interesting, even the acts I have never heard of (of which there are plenty).

My musical highlight of the day so far was The Piney Gir Country Road Show.

The day has been hot & humid so far and this obviously helps the atmosphere along a good bit: lying in the grass, enjoying the music and a glass of Pimms next to the Waitrose food stand. Yes, festivals these days can be eco-friendly AND terribly middle class.

There are a lot (and I mean A LOT) of children here and there is plenty for them to do: story telling, play equipment, ukulele workshops, circus workshops and whatever else you can think of.

Myself, I had a nice little sit down and listened to an great old fashioned storyteller who was keeping both the kids and the adults engrossed in his mediaeval tale of a thieving baby.

Dark clouds are rolling in at the moment so I am going to find a safe place and have a drink whilst listening to some lovely music.

02 June 2010

Wychwood Festival blogging

Short warning: I will be blogging LOADS here in the next few days about my experiences at The Wychwood Festival. So if you don't like music or festivals or blogs, you better not visit here:-)

So, how did this come about? The lovely people of The Wychwood Festival have decided that there is no better advertising than word of mouth. I tell my friends how lovely their festival is and they tell their friends and their friends and so on. This year, Wychwood Festival has given a number of Blogger Passes to folks like me. What do I have to do in return: Blog, Tweet & Facebook about the festival.

Well, I can do that!

Who's playing I hear you ask? To be honest, I know only a handful of the people on the bill. Seth Lakeman (only by name though), The Levellers, Happy Mondays, Lightning Seeds. That's about it.

So I'm very much looking forward to hearing new music, making new friends and spending time at one of Britain's loveliest and family friendly festivals.

Finally, it is of course unfortunate that, in order to be able to blog live from the festival, I have been forced to invest in a netbook as carrying around my laptop would just be too much hassle.

I wonder if they have wireless internet on the festival site...

28 May 2010

I'm back!

Dear Blog,

I must apologise for ignoring you for so long. I admit, I have been unfaithful. I have spent time on other social networks such as Twitter and Facebook. Of course I did not mean to upset you but there was just so much interesting stuff going on elsewhere that I could not resist. Personally I blame Miss Rosie and her gang of Pink Ladies for distracting me. But what a glorious distraction it was.

But I'm back now and I'm willing to try again. If you'll still have me.

So much stuff has happened since we last spoke. First of all, due to internal fighting and general bitchiness, Invocal have been disbanded. Yes. It's true. As a manager, I finally could not take it anymore and I told the ladies they might as well pack up and go to University to learn a trade or travel the world or something. And Helen and Bee promptly did! Needless to say this has left Miss Rosie & Miss Rachel with a lot of spare time so I have heard they are planning a Very Special Thing to be launched in autumn. I'm sure I'll be able to tell you all about it soon. But first there is the small matter of Invocal: The Final (over)Act, the last ever Invocal gig on July 17th in Northampton. It is already sold out but there will be a lovely Live album released of that gig afterwards.

I have also learned a lot more about doing sound for live music. I just throw a few faders around and everybody loves me. Well, I think they do. The bands seem to sound much better without vocals in my opinion so they should be grateful that I am behind the desk.

Jane is doing much better too. Instead of her forgetting everything all the time, now, she just forgets to make me breakfast and tea in the morning. Needless to say I am working on this as that is simply not acceptable.

So now you know everything. I hope you still love me.

19 April 2010

I'm a live sound engineer (ahem...)

Soooo..... this weekend I went on a course to learn how to become a live sound engineer. Sound engineers are the people behind the sound desk at gigs. They are the ones making the band sound great. They are also the ones who get all the cool chicks (well, in reality, that means they have first choice after the band is done with the girls...) Gosh I am bad!

Anyway, I have always been interested in how to create a nice sound at gigs. Being involved with Invocal means I get asked by many venues: so, what sound system do you need? And I always have to say: I don't know, I'll ask the band and let you know. So I decided it would be nice if I got some knowledge so i know what i am talking about.

Also, most of the time at a show, the sound engineer (if you are lucky enough to have one!), is used to doing loud rock bands and has no idea what to do with a cello or mandolin. Obviously, I know the music in detail so I thought it might be helpful if I could either help out the sound engineer or, in cases where there is no sound engineer, perhaps 'do' the sound myself so that the band can focus 100% on performing.

I looked online and found the courses to be REALLY expensive. Except for one in Gloucestershire, a 2.5 hour drive away. The course was 2 days and organised by Base Sound in Stroud. £260 quid for 2 8-hour days. That's a mere £16.25 per hour!

So I booked it. Well, let me tell you, it was really hard to concentrate through parts of it but easily the best £260 I have spent in a long time. There was initially a lot of theory about soundwaves, amplitude, frequencies, Ohm, volts, Decibels and Watts. it made my head spin as I am CRAP at science/physics. But at the end of the two days, it all made sense.

Learned how to use a desk, what functions of the desk are, how a soundsystem works, how microphones work, which microphones to use, where to put them, how to link up the speakers, monitors, instruments, how to create a 'Front of House mix' (the sound the audience hears), how to create a 'monitor mix' (what the musicians hear on stage), how to avoid feedback, how to add effects like reverb and delay etc.

Especially when it came to the bit about reducing feedback, the reason for the theory lessons about Hz and kHz became clear. Instead of just bringing the sound down, I learned that feedback can be avoided by removing certain frequencies from the sound instead! Awesome tip! Yay.

So, would I now be confident to go to a gig and 'do' the sound? I think I would be OK but ONLY if I was given unlimited time to set stuff up and do a soundcheck. Of course you get faster the more you do it but it is finding the opportunity to actually start doing it and have a band that is willing to give you that little bit more time to get it right the first few times.

Hopefully I'll get the chance. I can definitely recommend the course if you are interested in live sound engineering.

22 March 2010

The right to be a bigot

A gay couple were turned away from a Berkshire guest house by the owner who said it was "against her convictions" for two men to share a bed.

Is it possible to be annoyed that these guys got turned away and yet kind of agree that, no matter how bigoted her opinion might be, as a PRIVATE guest house, the owner should have the right to not take gay couples into her home if it makes her uncomfortable?

If I was running a B&B and some staunch religious zealot would book a room (let's assume I knew he was a religious zealot!), I would be uncomfortable about renting a room to someone who so clearly disapproves of me and my 'life style'. So I would probably refuse him. That makes me a bigot too I suspect. Well, so be it.

A B&B is MUCH more personal than a hotel as you really are staying in someone's house. When I book a B&B, I always check they are gay friendly, either by asking or by checking with gay websites or guide books. It is just not worth the trouble. Most of the time, people say: No problem, I don't know why you even ask. But better to ask than to be turned away, right?

Instead of going to the police to report her, we should work on educating people like her so she's no longer uncomfortable. Otherwise people like her will only feel pushed into a corner against their will. This will only strengthen her beliefs and the fear they are under threat. *Puts on flame-proof trousers*.

13 March 2010

I'm alive!

So. After months of nothing, here is a new blog post. Really only because my mother told me off for not posting anything. Bit strange because she calls me every week as wel so there is nothing she does not know already! Nevermind. I guess I should be happy that she cares so much.

So what has happened since January?

Well, the best thing is that JD's brain tumour treatment is finally working! The first 6 months of chemotherapy (Temozolomide, for those who care) has resulted in the malignant cells becoming undetectable on the scan and the benign areas of the tumour shrinking considerably. Yay! So for the next 6 months, she'll continue with the chemo and hopefully things will keep improving.

Other than that, Invocal is still ticking along nicely. Not as much as I would like to so there is still lots of work to do all the time but the new website, designed by Yours Truly is finally live: http://www.invocal.co.uk. That has been going on since it was warm enough last year to wear shorts (I remember showing the initial designs to the band in the beer garden in the pub...) so I am glad it is finally sorted.

Also another video live on YouTube for the song Josie oh Jo.

JD and I went on a lovely snow trip to Andorra last week. Lovely snow, cheap booze. Snowboarding went quite well but I did fall over a few times. Nothing serious though. Next year I think I'll take some lessons because I want to get better than I am now and it seems I am too afraid of falling to improve without some extra help.

That's kind of all there is to say really.
Next month I am going on a course to learn to do sound at live gigs. Might come in handy for Invocal work but mostly I just like to learn about how to do the sound at a gig, what to listen out for, etc.

03 January 2010

No Invocal for a change

Yes, you see it right: this post will not discuss Invocal. Well, not much. Simply because over Christmas not a lot has happened. You can buy the new EP, called Strange Sugar here at Nettlewine for a cheap £3.99 and I am still working on the new website but that's it really. (Actually there is a lot more but I won't bore you with it!)

As it is a new year, I thought it would be a good idea to look back at 2009 in a really quick summary. So what has happened this year (and, more importantly, who cares about this kind of self-indulgent navel-gazing??)

January - June
JD had to have radiotherapy on her braintumour. Every day for 6 weeks we got in the car for an hour to have 10 minutes of treatment. We had been warned about possible side effects but let me tell you: radiotherapy to the head is fucking devastating. Only in September did JD start to recover from the damage. No concentration (and I mean: not even for 2 minutes!), extreme lethargy, forgetfullness to the point of forgetting to eat and forgetting what day it was, non-stop eating, depression, lack of initiative, self-centeredness, inability to understand emotions, both her own and other people's, unable to plan more than 5 minutes ahead, not able to have a phone conversation with the radio on, the list goes on. We were not properly warned and forthe first time since she was diagnosed back in 2005, I really felt like screaming, hopelessly desperate and unable to see a light at the end of the tunnel. I just could not see how JD would ever get better again. And I am not talking better from the tumour but just recovering from the damage of the radiotherapy.

Life just stopped being anything like it was before and I had a tough time living my own life as well as living JD's life for her more or less. I don't care if people think I am being selfish for saying it was difficult for me (after all, JD is the one with the nasty tumour) but it was. So there.

June - December
Life has a funny way of throwing things at you. In June I read something in a local rag about Spratton Folk Festival. It said all-female group Invocal would provide the local flavour to the festival. So I checked them out. Found they were looking for a singer. Agonised about it for days (am I good enough, I'm shit, really), got in touch, did not get the job but ended up as their 'manager' in the end.
No idea what a manager does so I just jumped in, started about 50 things at the same time, then drowned in ther amount of work I started and did not finish (ADHD much?) but managed to do some good stuff in between. (video, brochures, PR, general organising, whatever). The only thing I have not managed to do is book any gigs. Bit of a bummer really... keep working on it. (see how I managed to avoid saying I am talking about Invocal here!)

Anyway, it is absolutely lovely to be doing something in music again, even if it is not performing and playing. Sometimes I feel like a groupie and a fraud. But I just love being around music and people who make music. It just feels like a lovely warm blanket. The unexpected side effect is that I have also made some new friends and I have actually seen more pubs since June than my entire life before then. Yes, I have a social life. Well, I had one before but not in Northampton. Never got round to building a new one after moving here.

JD recovered well fromthe radiotherapy but has lasting trouble with her concentration and some remaining lethargy that may not go away. Unfortunately the RT did not help & the tumour actually changed in to a Grade 3 Astrocytoma in certain places which means it went from wholly benign to partly malignant. Bummer.
Soshe started chemotherapy in August. 5 days of Temozolomide per month. For 6 months initially. She will be on that for as long as it stops the tumour from growing. Which may be for the rest of her life. IF it stops it from growing. We'll know after the first post-chemo scan in February 2010.

My sister gave birth to her second daughter, a tiny little puppet called Alessia. Hurrah. Now my folks are proper grand parents I am I am officially off the hook for providing the offspring. Phew!

That's about it really. Other than a lovely holiday in France and erhm....lots of other stuff I have forgotten about for the moment.

Resolutions for 2010:
- Book more gigs
- Be more organised
- Go out more
- Make money & get paid
- Find a cure for AIDS & brain tumours