31 January 2011

Scan results

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 probsbly 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 travelling 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, hwnce 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.

28 January 2011

Ski trip!

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 scool 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.

Whilst we still can...

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 travelling. 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.

JD 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.

19 January 2011


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

04 January 2011

A new year

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 skiiing 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 sking, 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 disasterous one from August.

The new oncologist is a nice lady and I am sure she will be much more approchable 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.