31 May 2009

Cycling trip

Group of girls on the Brampton Valley Way. Hot.

21 May 2009

My mother's broken dreams erhm...ankle.

My parents went on a 10 day trip to Italy this week. They left on Tuesday to stay in a house near Genoa. This morning, my dad rang to say mum had slipped in the shower and broken her foot/leg/ankle (whichever). On their second night. Poor man was in tears. They speak a bit of Italian but nowhere near enough to be able to call the ambulance and explain what happened. Luckily the neighbour speaks a bit of German so they helped with getting mum sorted for a hospital trip.

Her foot was instantly purple and swollen and it is, say the doctors, a nasty fracture that requires surgery. But hospitals in Italy are high on the MRSA list so mum said she would absolutely not have surgery in Italy. So now they will try to fly her home on Saturday. They suggested she could hobble on to the plane on crutches but dad said she is depressed, scared and unstable on her feet so he won't let her leave unless it is ina bed. So now they are flying over a nurse from Holland (that's the law) to sit next to mum's bed in the plane.

Dad is right though. It must be really scary to slip in the bath. And if you have never ever used crutches before, going on a plane trip with them at 60 is not a good idea.

I feel sorry for both of them. Mum in a skanky hospital with no privacy curtains and terminal patients mixed with minor injuries, nobody to talk to, not many books to read (they had planned loads of trips, rather than lots of quiet reading). Dad alone in the holiday house they rented, on top of a hill, 3miles from the village, nobody to talk to, not much Italian to speak and cupboards full of shopping and food (they had just done a big shop to sustain them with wine, cheese and other nice nibbles.)

Luckily my sister speaks fluent Italian (did I mention she is pregnant again?) so she can speak to people on the phone for dad if needed.

Poor dad. He was so stressed with work, he really needed this holiday. And now he will be spending the next few months caring for my mother. Hopefully the surgery will be done soon and mum will be home recovering asap.

Should I go over there to help? Nothing I can do. It would just be to keep her company.....Grrrr...I hate not being able to help.

19 May 2009

Slowly but surely...

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. It will be a long time before JD will be back to the way she was before the treatment started. She looked a little confused and slow to react sometimes 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 on what to do with the ball 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.

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 if there is any?

15 May 2009

More hair.....

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.

12 May 2009

High in grade, low in grade? Anyone? Tumours. High in grade, low in grade?

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.

03 May 2009

Tennis in the park

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.