19th May2009

Keep it simple

by Dutchcloggie

Things are indeed getting better I feel. Maybe the fact that JD’s hair is now growing back in earnest makes me feel very hopeful of this all being over someday soon. I love touching the fuzzy hair on her head and stroking it. Last night we went to a rugby tournament that we both play in over the summer (Touch Rugby so no need to worry) and the girls in the team (who had not seen JD for a week or so) all said: Wow! Your hair is really growing back fast now. It made me smile. That is, until they started playing and I realised it will be a long time before JD will be back to the way she was before the radiotherapy treatment started. She looked confused and slow to react to what was happening on the pitch. But she said she was really enjoying herself so that was great. Maybe the tactical talk we had before the match helped her.

In touch rugby, there are only 6 players on the pitch and they have no specific task and decisions are made in a split second; exactly the thing JD is struggling with at the moment. So I suggested that instead of doing that, JD should be the only player with only 1 specific task on the pitch so she could focus on that one thing. So all the players on the team knew what JD would and wouldn’t do.

It seems that worked really well and JD played quite well. It still made me cry a little though.

We are getting her a free bus pass because last week her driving licence was revoked due to having had radiation to the brain and some focal minor seizures. It is the right decision but it made JD quite upset. The emotional impact of loss of independence is something that can not be underestimated. It is different if YOU make the choice not to drive. It is not nice when you are told you are unfit to drive.

But things are getting better. Slowly. But surely. The only thing to find now is: how far does the progress go and when will any permanent damage become obvious?

15th May2009

More hair!

by Dutchcloggie


Look at that! A lovely head of hair. It is growing back nicely. Far too slow for my liking as I am really excited about it and I want to see what it will look like when it has grown back fully!

I love stroking her head and the new fluffy hair. Radiotherapy can kiss my butt!

14th May2009

High grade or low grade tumours?

by Dutchcloggie

Yesterday JD & I went to another brain tumour seminar in London. Informative as it was, it focused too much on high grade tumours and not enough on low-grade ones. I understand high grade tumours are more ‘sexy: they are aggressive, they kill real quick (in a few weeks sometimes) and they are mostly incurable. It is much easier to get sympathy and funding for such a terrible disease.

With a low-grade tumour, people can live for decades. In fact, they can even be cured in some lucky cases. But that does not mean they do not kill a lot of people. And just because you can live with a tumour for years does not mean it is not cancer or invasive. Low grade tumours are called low grade because they grow slower than high grade tumours. They may be dormant for years before growing at all and they might grow at such a slow rate that many people with low grade tumours are on a ‘Wait and See’ treatment plan, meaning nothing is done about the tumour until it grows too big.

But there are plenty of people with low grade tumours that have radiotherapy, chemo therapy, multiple operations to remove tumour tissue and resulting brain damage from removing healthy brain tissue and so on.

So although they may not kill as fast as high grade tumours, they are still a nasty thing to have and they can still seriously wreck your life, if anything because of the constant fear of having a time bomb in your head that might go off at any moment.

There is not a lot of research done in to low grade tumours. Treatment that works on high grade tumours does not have to work on low grade ones. They are different animals.

And so it means we just don’t know much about it at all. Not much info on life expectancy, not much info on treatment, not much info on quality of life. Not much of anything really. But a lot of pain, trauma, hospital visits, crying, hair loss, illness, anger, fear, loss of independence, loss of self esteem, loss of quality of life.

People with low grade tumours get all that. But nowhere near the (media) attention they and their loved ones deserve.

05th May2009

Things can only get better

by Dutchcloggie

How do you know things are getting better? How do you know she is not just having a good/bad day?
Last week, I asked JD to start making dinner before I got home so I could go to a meeting of my sports club. And lo and behold, when I got home, she had made a start with dinner, chips were in the oven and the dishwasher had been emptied.

A few weeks ago, that would not have happened. So, I am thinking that means there is improvement. She remembered to do what I asked her to do and did it.

But then again, last week, I asked her to go to our doctor so she could pick up HER prescription which I would then take to the pharmacy. I stressed how much I would appreciate her doing this as I was very busy already and I am sometimes struggling to keep track of all the things in both our lives that I need to do and remember. JD can play sports for an hour or so, so a 15 minute walk to the doctor was not asking a lot. She could easily do it. I also stressed that if she did not go and pick it up, she would be out of medication at the weekend and that it would be her own responsibility to sort it out.

So I tried the nice approach, I tried the ‘it would mean much to me’ approach, I tried the ‘it is really urgent’ approach. I rang her during the day to remind her to go. Twice she said she was about to go. But when I came home from the office, she had not gone. I was angry and disappointed. Especially because I had told her it would make my life so much easier if she would go and pick the blasted thing up.

Sometimes I feel taken for granted. She says she loves me. I know she does. I love her too. Lots.

So what is improvement? The fact that she can play sports for an hour? The fact that she remembered to empty the dishwasher? Or was that just a fluke?

03rd May2009

Tennis in the park

by Dutchcloggie

Yay! The tennis courts are open again. Great way for JD and me to get some exercise in and have fun at the same time.