06th Mar2009

Confused after radiotherapy

by Dutchcloggie

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 Dexamethasone (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 like 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 someone 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 communication 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!!

19th Feb2009

Done with radiotherapy

by Dutchcloggie

A post by JD

I’ve officially done with radiation. For now anyway. It’s nice to be at home and looking forward to doing weight loss activities like going to the gym and going for a walk to the shops to buy stuff that I don’t need. I need to cut my hair tonight as well which will be a lot of fun – with my cheap and nasty petrol station clippers – and leave all of the bits everywhere. Ugh. Never mind. That’s what vacuums are there for I suppose! More weight loss. Hope everyone is doing well with their various treatments/waitings. JD

16th Feb2009

A hair cut

by Dutchcloggie

A post by JD

Hi all, Had all of my hair shaved off at the weekend and I’m still getting used to it. It’s quite cold up top so I’m wearing a nice new hat bought for me by my darling dearest. My hair is quite wispy where the beams go in, which is not unexpected I suppose. I just hope that it grows back nicely like it was before without going curly or turning any odd colour. No white woman’s afro for me thank you very much. Although scaring little kiddies into thinking i’m Side Show Bob would be a giggle. It won’t be the end of the world if it doesn’t grow back. I will just have to invest in some proper hair clippers to keep it all neat and tidy and not rely on the cheap and nasty ones that we got from the petrol station. We’re not at that point yet but can anyone recommend any? Whilst (while? – grammar experts please help me out) I’m here I am going to have my 2 cents worth on Jade Goody. Why on earth does everyone prefix what they say about her with ‘I know she’s not the sharpest knife in the drawer’ or something similar? It’s just so rude! She’s doing her best with a truly horrible disease and I do not begrudge her a single penny of the money she’s making for her children. Joint pain is back in the knees and at the worst time – when the parents-in-law are visiting from the Netherlands. Drugs are working well as well as a hot water bottle. Anyhoo…must go and do some ironing otherwise we’ll be going around crinkle-cut, which will be unacceptable to Dutchcloggie. I couldn’t care less but who am I? JD

23rd Jan2009

Joint pain

by Dutchcloggie

A post by JD

I take a wide variety of medications but over the past two days I have had the worst joint pain in my knees when I wake up. Not so bad that I can’t walk but bad enough that it keeps me awake. Anyone else have this or know what could be causing it? JD x

22nd Jan2009

Lost my first hair

by Dutchcloggie

A post by JD

As the title says I started to lose my hair yesterday. My scalp had been hurting for a few days and I ran my hands through my hair and a little clump came out. Well… If a little clump comes out then there’s obviously more to come so I had a lovely half an hour pulling hair out of my head. What can I say apart from the fact that it had that bubble wrap addictive quality. So now I have a little bald (thinning to be more precise) patch. Nothing falling out tonight so I guess i’ll just have to watch TV. Boring! I suppose I will lose a lot more of my 100,000 – 150,000 hairs but at the moment i’m not too stressed about it. If I end up with a whispy Homer Simpson style then it will be a different matter and I will have to take action. The nurse started to talk about wigs with me today but I don’t think it’s reached that stage yet. I don’t think that I even want a wig or even need one. I’m going to move forward with a nice hat and/or a scarf thing depending on the patchiness of the hair loss. As i’m saying a lot these days: We’ll see… JD x

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