19th Sep2010

BouncyBean is not well

by Dutchcloggie

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 immediately 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.

20th Sep2010

How does she feel?

by Dutchcloggie

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.

21st Sep2010

Not so good

by Dutchcloggie

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.

After the appointment, I went to my boss and handed in my notice on the spot. I told him I would not come back. From now on, I will be JD’s full time carer.

24th Sep2010

Moving house

by Dutchcloggie

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.

24th Sep2010

A matter of months…

by Dutchcloggie

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.

28th Sep2010

Hospice respite

by Dutchcloggie

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.

Good.

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.

25th Oct2010

A long overdue catch up

by Dutchcloggie

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.

30th Oct2010

To care or not to care?

by Dutchcloggie

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.

19th Nov2010

Getting better

by Dutchcloggie

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 so if you want to come over, give us a shout.

07th Dec2010

And so it goes on…

by Dutchcloggie

>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 for 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 telling 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 specialist 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…

17th Dec2010

Making decisions for JD

by Dutchcloggie

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!

04th Jan2011

A new year

by Dutchcloggie

What can be said about 2010? It started with a ski trip to Andorra for JD and me and it ended with everyone being grateful that there was another Christmas to celebrate with JD.

This morning, I booked a £150 an hour ski instructor just to spend an hour with JD on the indoor ski slopes of Milton Keynes. JD wants to go skiing again but I am certain this is a dangerous thing to do. But how can I refuse? How do I tell her: You’ll never ski again? Skiing is her absolute favourite thing in the world and I just could not take it when she looked so upset. So I suggested she goes on the baby-slope with a one-to-one instructor. He can then help her and see how well she can still ski. Hopefully JD is able to enjoy the skiing, even if it is not the same as flying through the air at Courcheval.

The current chemotherapy regime seems to still be working OK. JD’s treatment has been moved from Coventry to Northampton. An MRI is booked for the end of the month and I am very curious to find out how this one compares with the disastrous one from August.

The new oncologist is a nice lady and I am sure she will be much more approachable than the previous one. Good as he was, he did scare us a bit and we did not ask nearly as many questions as we should have. I will ask her this time about a detailed update on the tumour: what is it, what does she expect in terms of treatment and life expectancy etc.

People have been very reluctant this year to wish JD and me a Happy New ear. I guess it is because they are afraid this year won’t be a happy one. Maybe they are right. I have thought at midnight: is this the year JD dies? Or will we get more time?

I *know* there are people who are told they have limited time and still they live for years after. I am trying to think of how that kind of life would be. Always living on borrowed time. With JD’s loss of brain function, she won’t be able to live a ‘normal’ life so we’ll never be able to get back to the way things were. Unless some major improvement suddenly appears. Fingers crossed. I HOPE that will happen but I don’t believe in this kind of thing. Which is not to say I have given up hope!!

One thing is certain though. When it happens, we will all be much better prepared. When things went downhill in September, it all went so fast we had no idea what was happening. The old chemo stopped working and the new chemo had no kicked in yet. JD has recovered so much since then that our lives are really quite enjoyable at the moment. This time together is so precious to me. I have time to ask her, as much as possible, the things she likes in life, music she likes to hear, what she still wants to do. I get to tell her how much I love her. We get to spend time together I thought we no longer had. And having this time will make things much better. Maybe even easier.

But hopefully not in 2011.

19th Jan2011

Whatever

by Dutchcloggie

A post by Jane

 

Am watching this programme about orcas.

Am doing ok at the moment. Not so for Paul Slootweg who came off his bike this morning.

Marieke has to go to the dentist tomorrow… Ouch. Wuss.

Brain is feeling ok at the moment. mri next week so wish me luck.

JD x

28th Jan2011

Whilst we still can…

by Dutchcloggie

Last year, when JD was very ill, I cried when thinking about all the things we said we still wanted to do and never did. The places we wanted to go but thought: when JD gets really ill, we’ll start traveling. And the JD got really ill and there was no question of going anywhere anymore. It all happened too soon.

Recently JD has improved immensely and next month, we are off to Scotland for a ski trip, one of the things JD loves more than anything. As the days creep by and JD gets better and better, there is a risk of sinking back into the daily life and forgetting that things may not always continue to get better.

I don’t like bringing up the fact that JD will most likely not live for another 10 years as I don’t like upsetting JD. But this evening, as we were lying on the sofa having a cuddle, I realised we might be wasting valuable time. So I brought it up. I said if there was somewhere we wanted to go, it would be a good idea to do it as soon possible. Australia is probably out of the question, if only because of the long travel time, but Paris and Canada might still be possible. We can afford to do it with our savings and making the same mistake as before, waiting until things get worse, turned out to be a stupid idea.

I agreed and the first thing we will do is go to Paris. For how long? Who cares. A week? 2 weeks? Who cares. Actually, not the very first thing. First we are going with my family to the snow in Italy for a week in March. After our February trip to Scotland of course.

28th Jan2011

Ski trip!

by Dutchcloggie

Yes, you read that right. We are off on a ski trip. To Scotland.

JD is an excellent skier and Disability Snow Sport has a ski school on Cairngorm Mountain. They help people with a disability to ski. So I organised someone to be JD’s ski buddy for a few days. Now we can go and do the ski trip JD still wanted to do. And do it safely. Wuhoo! The first of the trips we have planned to do over the next few months. Live life while you can.

31st Jan2011

Scan results

by Dutchcloggie

Today we got the results of JD’s latest MRI scan. We had expected the results to be positive in some way, considering the massive improvements in JD’s health and cognitive functioning in the past few months.

Unfortunately this was not the case.

The doctor said that on the scans, they could see some new areas of tumour activity in the Corpus Callosum. The rest of the scan appeared stable but obviously having possibly new tumours is not good. It indicates that the chemotherapy is not working. They will discuss the scan in more detail tomorrow with the team and then get back to us but I am not hopeful.

This means that JD really is on the way to dying. The doctor says we are probably looking at about a year or so.

The sad thing is that JD is advised not to fly too much. So much for the plans we had to do some traveling around Europe. Paris is still an option by Eurostar but the Alps are out due to the altitude (which has an effect on the swelling of the brain, hence flying also not being a great idea). We are now going to go to Stockholm asap, now that JD can still fly.

The news has hit me really hard. I really feel defeated and deflated. I am overcome by a feeling of Nothing matters. Who cares about a healthy diet? JD is going to die anyway. Who cares if we spent all our money ? If JD wants that £150 ski jacket, who cares. She is going to die anyway. Why bother looking around for the best deals on our trips to Stockholm & Paris? JD is going to die anyway so who cares about money.

I want to cry and cry and cry. I want to get very Drunk. I want to throw stuff and break things. I want to hit someone.

But I can’t. Because JD wouldn’t be able to survive if I go off a cliff.

24th Feb2011

Message from Jane

by Dutchcloggie

This is a quick message to let you all know what is going on…. I am off to stockholm with marieke(!) —- fluffy bum the cat.Just got back from Scotland…   Very cold and windy on top of Cairngorm.had a good time overall though. Ended up feeling quite itchy. A few good days skiing. Got bruised bottom from falling over.Got anonymous card this morning with this address on: http://www.the-gift-of-memories.com/JaneandMarieke . Thank you to my friends. I love my friends. Off to have some lunch before going to pick up my Kroner.

04th Mar2011

Some fun things

by Dutchcloggie

Since the last slightly depressing post, things have more or less continued as they were before. In fact, nothing much has changed really. Apart from JD now having some kind of terrible itch all over her body. It is not a skin problem as there is nothing to see but she can not stop scratching, day or night. It really is eating away at our ability to sleep properly so she is having a blood test soon to see if there are issue with her liver that would explain the problems.

On the fun side, we have been away on some trips!

First we went to Scotland for a few days in the snow. JD is an excellent skier and wanted to ski again this year, as we do every year. However, taking her abroad felt rather risky. On top of that, she needed someone to ski with her as she has balance and concentration issues. We found help from Disability Snowsport UK. They have a ski school up in The Cairngorms in Scotland so we set off to Bonnie Scotland for a week in the snow. The people there could not have been more helpful. They were lovely with Jane and JD had a fantastic time skiing. I don’t know what I would have done without DSUK. I love them. Also, I need to thank Brain Tumour UK for their kind contribution towards Jane’s ski lessons.

Some pictures:

After that lovely trip, we also went to Stockholm for 6 days. Jane said she really wanted to go there so off we went like a pair of regular jet-setters!

It was still really cold in Stockholm so there was more snow and ice for us to see. We had a lovely time in a very expensive-feeling hotel. The most important thing is that JD enjoyed herself very much.

.

All this travel does not come cheap and I was very very touched when JD’s friends set up this website where people could donate money towards our future travel plans: The Magical Memory Tour. Such a sweet thought and really helpful because although it might look like we are living the jetset lifestyle, it really does not come cheap and for our friends and family to realise that and wanting to contribute to our memories is really touching. We are very grateful indeed. I am slightly concerned by the feeling of asking people for money but then again, so many people ask if there is something they can do for us and quite frankly, the gift of memories is a wonderful thing.

15th Mar2011

End of the chemo?

by Dutchcloggie

Yesterday for the first time, we discussed ending the chemotherapy with the oncologist.
We heard in January that the chemotherapy was most likely not working and that there were new tumours growing in the brain. We decided though that the chemo would continue until the next scan and see if the chemo was perhaps slowing down the tumour growth, if it wasn’t stopping it.

We went away the Scotland for a ski trip and whilst away, JD started to suffer with severe itching. No skin rash or anything. The itching was coming from inside her body.

After 4 weeks of little sleep and lots of scratching, the oncologist looked at JD’s bloodtest and said it is most likely her liver, suffering from all the chemotherapy. We discussed the point of chemotherapy, now that the doctor was of the opinion that it is not working. If it is not stopping the tumour and causing liver damage, it begs the question: why continue with chemo?

I could not make the decision there and then. Saying: let’s stop…. That means that from then on, it will just be a matter of waiting for JD to die. And I am not there yet. i am not ready to start on the road of JD slowly getting drowsy and eventually slipping in to a coma. Not where the chemo might just be keeping the speed of tumour growth down. Until a scan tells me that the chemo really really has no effect, I can not stop the treatment. JD does not want it either.

But what about quality of life? The itching is driving JD mad. It is keeping us both awake at night. So it was decided that JD would skip this month’s cycle of chemo and see if her liver will recover a bit. If it does, JD will pick up the chemo again and continue until the next scan. What happens after that is for later concern. If this chemo does not work, there is apparently another type. This one would be given every 3 weeks, intravenously. I don’t want to think about that one as it will make JD feel really unwell so you get to the whole quality of life debate…

JD says she wants to keep going with the chemo. It is her life. Her choice.

22nd Mar2011

Fighting cancer? Just fuck off.

by Dutchcloggie

With JD’s health taking a nosedive again this week, I am becoming more and more angry with people talking about cancer and brain tumours as something they should “fight”. The term “fight” implies some kind of contest that can be won with wit, dedication, skill and will. That means that those who die clearly did not fight hard enough. If only they tried harder, researched their condition better, looked for that one surgeon in the US who would be willing to operate, then it would all have been different. You lose the fight because of your own fault.

Well that is bullshit. It is not a fair fight. When JD was first diagnosed, about 6 years ago, people on a variety of internet forums were telling me that they did not look at statistics and survival rates because they did not want the brain tumour to ruin their lives. They were going to fight it and continue as always. They were going to beat this and JD could beat it too.

What I really needed back then was not this form of denial. I wish someone on one of those forums had just come out honestly and said: this is going to kill her. On average, she’ll live 6 years. yes, there is a chance that it can be cured, but more likely than not, she will die from this.

That would have given me hope but not false hope. Because the majority of people DIE. The majority of people do not live longer or survive it. it is therefore unfair of people and doctors to suggest that, yes, you may die of it but there is a good chance of a cure. That is like saying there is the same amount of proof for Darwinism as there is for Creationism. It is an unfair and unbalanced comparison of two options, one of which has actual proof and the other has none or very little proof. You can not present them as two equal options.

The term that gets abused the most is “survive”. You survive something like breast cancer where you are declared cured and cancer free. Many people I speak to claim they are brain tumour survivors just because they are still alive and relatively symptom free xxx years after diagnosis. This is, once again, giving people false hope. You are still ill with a brain tumour as long as the tumour is there and ticking away like a time bomb. So when people are saying they are surviving, they are giving others (people like me, who initially misinterpreted this term) false hope. All it means is that the disease is taking longer to kill them. You don’t survive most brain tumours. Some just take longer to kill you than others.

JD and I never looked for a second opinion. We never researched the internet to find some doctor in the US who might operate on her. We never questioned the doctors that treated JD. We believed they did the best they could.

Does that mean we did not fight? Does that mean JD is less deserving of a cure than those people who raise funds, run marathons whilst on chemo, go on a mountain trek through the Andes? Less entitled to a life than those who spent all their time looking for a second or third opinion, finding and funding an expensive trip to the US for surgery? Are they the real fighters?

Yes, I am angry. Because amongst the shouting about fighting and bravery, the voice of those who just accept their fate and try to make the best of the time they are given is lost. But when that voice does get heard, it is shouted down for “being negative” or for taking away hope for those “more positive”.

So it is OK to give people a false sense of hope because it makes them feel better but it not ok to give people a realistic idea of their chances to survive, because that is depressing?

Doctors seem to work on a Don’t Ask, Don’t Tell policy. If you don’t ask, they won’t tell you how long they really think you have left. But how can I know what to ask if the only thing I keep being told is: fight, hope, brave, good chance, we’re optimistic, etc…

If JD and I had been told with more certainty that she would most likely die around 6 years after diagnosis, we would have made that trip to Australia years ago. We would have gone to Canada years ago. We would not have had to settle for a handful of quicky trips around Europe.

But even the doctor, when we asked him about JD’s prognosis, said things like: Oh I have patients who have been on this drug for years and they are still doing well. At the time, we thought that was a good answer. Now I realise it was the worst answer. It made me feel dismissed in my fears that JD might not be one of the lucky ones. The doctor should have said: Well, I have patients on this drug who have been doing really well, but generally, the average time for this drug to stop working is xxx months. That would not have upset me or made me feel desperate. That would have given JD and me time to get our affairs in order, do the things we wanted to do, instead of thinking there was a real chance of her still having years to live. Now, we plodded on as normal. JD tried (and failed) to finish her PhD, I kept my job.

And by the time JD got really ill, we did none of those special things we said we would do.

I am not angry at people for giving us hope. Hope is a good thing. I am angry for not being given a straight forward and honest opinion on what was most likely going to happen. I have had to look on the internet to see what happens in the final stages of life with a brain tumour, and it is not pretty. Not that the doctors told me any of that…

Yes, I am pissed off. Very much so.

27th Mar2011

A JD update – Insert snazzy title here

by Dutchcloggie

After my outburst in the previous post, it might be time for an update on how JD is actually doing. I can not think of a catchy title so I have done away with it.

In the past 2 weeks, things have taken a down turn. JD is once again struggling with walking, having very little balance and co-ordination.

Our trips to Holland and Paris have had to be cancelled.

I have re-applied for carers to help with dressing her in the morning as I no longer feel comfortable holding her up whilst trying to walk. My back is struggling. Also, JD is unable to correct her position so when she slides off the chair in the bath, I am unable to lift her on my own. This is potentially dangerous. So after 3 months without carers, I am bringing them back. It is something I really do not like doing as both JD and I feel it as an infringement of our independence and privacy.

Conversation is also going downhill. It is basically a lot like it was last year in October. Back then, she ended up in the hospice for over a week. So after discussing it with the MacMillan nurse, we decided to try what worked last year: a very high dose of steroids.

The deterioration last year was very quick and mostly the result of swelling of JD’s brain tissue, rather than actual tumour progression. This is also why the deterioration went so fast; swelling can be really sudden and fast. The steroids helped reduce the swelling and JD recovered reasonably well.

With the brain tumour having grown and new ones on the scan, the chances were that this time, it is not swelling of healthy brain tissue that is causing the problems, but actual tumour progression.

We tried the very high dose of steroids in the past week. if the deterioration was due to swelling, we would expect improvement. Unfortunately, this is not the case and her problems have not been reduced*. This means it is actually the tumour causing the problems and that means there seems to be very little left to do.

The question now becomes: how fast will all this go? I do not want JD to go into a nursing home so I want to care for her at home. I am not sure I can deal with her actually dying at home in our own bedroom so I am keeping the option of her going to the hospice at the very end open. But until then, I want her at home.

But how long will that be? This cruel disease means that sometimes things go downhill really fast, only to the stagnate for a while and then it can be over in days. Because it depends on where the tumour is actually located, patients can be lucid, walking and talking only days before their death.

So it can be weeks, months. So planning the care required is hard as it can change in the space of a few days. I have ordered a hospital bed, even if we don’t need it yet, just because it can take a while to sort it out.

This post should have some kind of conclusion but it is just an ongoing thing. Keeping you all updated on how things are going.

* however, having said that, it can be difficult to notice the tiny changes. Like this afternoon, JD seemed to be more stable when standing up. Maybe I have judged it too soon and more time is needed.