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.