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Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

Confused after radiotherapy

06 March 2009

It is now 2 weeks since JD finished her 6 week course of radiotherapy to the Astrocytoma in her right anterial frontal lobe.
We were expecting side effects to slowly go away. Instead it seems things have just gotten worse. Maybe it is related to her being weened off the steroids at the moment? She was on a really high doses of Dexamethasons (16mg per day) and so weening her off will take until the end of May!

JD never really experienced the tiredness we were warned about at the start of the treatment. So that was a good thing. Even now, although still easily tired, it is still nothing like the tiredness we were expecting. So that is good.There are some headaches now but that can be related to the reduction in Dexamethasone.

The thing that worries us a bit though is the increased confusion, lack of concentration and inability to remember things.

JD has apparently had a rather radical dose of radiation, to make sure the tumour dies a proper death and it seems that she is now starting to suffer from late-side effects.

Doing more than one thing at the time is more difficult than before. If people tell her something that consists of multiple bits of information, she has trouble remembering all of he bits as well as with putting it all together in to a comprehensive story when asked to recount the situation.

For someone who was working on a PhD before treatment started, this is hard to take. She is trying to get back into studying again but we have to write everything down on Post-It notes or she'll forget. Now having 15 Post-It notes makes her feel so despondent that she struggles with getting going with even the simplest of the outstanding tasks.

For me personally, it is just frustrating. In more ways than one. I am not a patient person so I will frequently lose patience with JD when she has once again managed to do only 1 small task in an entire day. This upset JD but also upsets me because I feel bad for not being more patient and understanding. I mean, how much is reasonable to expect of someone? Some days I get really annoyed that she has not done things I asked her to do. Or I find out she only told me half of something important. And then I really struggle with not being angry and annoyed. Most of the time I fail and make JD feel liek she failed.

I want to help but it is hard not to be patronising or treat her like a child ("Do you think you can do 2 of your 15 tasks today? Let's try to get 2 done and if you can do more that is great. And then tomorrow maybe another 2...."). However, she does want me to help her organise things. But does that mean it is OK for me to call her at lunchtime to see how she is doing and to gently remind her that she is supposed to try and get her 2 jobs of the day done? Is that too much like a parent, rather than a wife?

How do you know someone is 'just being lazy and unmotivated' like we all can be some days when we just cannot be bothered. How do you tell the difference from smoeone who says they have really tried but they were just distracted by the TV, the radio, the internet and whatever else distracted them?

Are JD's symptoms normal? How long will they last? Will it be permanent? How long before she can really be asked to take responsibility again for putting her life back on track by returning to her studies etc?

In many ways, we thought the treatment was the hardest part and that things would get better now. But right now, it seems that this is the most difficult part of it. This is the part where communicaiton is the most important thing or else a relationship can really suffer.

Update: Must clarify that '15 tasks' is a random,hypothetical number and not tasks I have set JD. They are all just general things she has on the go in her life. Re-ordering medication, picking up medication from pharmacy, write email to university tutor, write up meeting notes. etc. Not things she has to do per day! They also do not include things like the ironing, the shopping, laundry etc! I am no slave driver!!

2 comments:

Julie said...

Is this just hypothetical? 15 tasks is unrealistic for anyone, IMHO.

JD: what do you think? Communication is important: can you tell M what you think here?

For me, THE most important task is that JD get through each day feeling okay about herself. Did she do the piled-up dishes - not important. Was the washing hung out - NI. Did she buy milk - NI.

Did she download article X that impacts her thesis: more important. Try one task a day like this. One task that goes to the core of JD as a thinking, intelligent person. All the other tasks - the crap of daily living - is for her partner to achieve.

Dutchcloggie said...

Erhm, must clarify the 15 tasks thing I feel. I mean not 15 tasks per day!! (and yes, that was a hypothetical number) These tasks can be anything, ranging from 'call mother for chat' to 'post letter to insurance' and 'write email to tutor', 'sow button on to favourite shirt', write up notes of committee meeting etc. They are just things that need doing at some point. They are not tasks I set her like the ironing, the shopping, the laundry etc.

You know, things she has to do at some point in the near future. Not tasks per day!

However, if JD says: I'll do the dishes, then I will count on her doing them. If she says: I will do them if I feel up to it, then I will be happy if they are done, but no problem if they are not. This is a matter of trust and being open and honest to each other about expectations and ability.

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