27 March 2011

A JD update - Insert snazzy title here

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.

Witht the 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.

22 March 2011

Fighting cancer? Just fuck off.

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 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 peopel 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.

15 March 2011

End of the chemo?

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 anythng. 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.

04 March 2011

Some fun things

Since the last slightly depressing post, things have more or less continued as they were before. In fact, nothign 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 sratching, day or night. It realy is eating away at our ability to sleep properly sop 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 jetsetters!
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.