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.

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