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We are getting her a free bus pass because last week her driving licence was revoked due to having had radiation to the brain and some focal minor seizures.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!

27th Apr2009

And then there was hair!

by Dutchcloggie

Yippie! JD is sprouting hair. Of course in a silly place. Right in the middle of her forehead, a little patch of new hair has appeared. It is about as small as a Pound coin, but it IS new hair. It is much thinner than her ‘old’ hair so it feels nice and soft.

Made me feel a little bit like spring: new young plants start poking their head above the earth. Hopefully this means there is more new hair to come. I think I can spot the signs of new hair now and I have noticed a tiny change in another area on her head where the skin looks like it is getting ready for some hair to come out.

Fingers crossed!

02nd Apr2009

Not getting any better

by Dutchcloggie

JD finished her 6 weeks of radiation for her right frontal lobe tumour on February 17th. Although we were warned by the oncologist about some side effects and these potentially getting worse before it gets better, we are quite concerned with how things are currently going with JD.

The first few weeks after the end of the treatment, things were fine. However, in the past 3 weeks, things have steadily gotten worse. She is not suffering too much from fatigue that we were specifically warned about but from a host of other problems:

– Severe loss of short term memory (Forgetting the question during the time that she is thinking about the answer)
– Slow in responding to communication
– Extremely distracted
– Unable to concentrate on anything
– Unable to do 2 things at the same time (for example, a phone conversation is almost impossible as she is distracted by everything around her during the conversation)
– Lack of empathy and understanding of other people’s emotions, inability to take impact of her actions on other people in to account

This is more severe than we were expecting from the information we were given after the treatment and it is causing JD considerable frustration. Not only that, but it is also causing stress in our relationship as I am unable to talk to Jane about how things are going, unable to motivate her to do even the smallest things.
We have tried all the memory techniques I can think of but in the end, if Jane does not look at the reminders or the calendar or her phone or ignores them all, then there is little left to do.

The oncologist said it can take up to 6 months for things to return to normal but things are currently really difficult as I have no idea if I should push her into being more active and do more stimulating things or should I leave her on her own, at home, all day, doing nothing but Sudoku puzzles. She does however say that she does not feel depressed or sad. So I guess that is a positive thing.

As someone who has Attention Deficit Disorder myself, I feel JD has very similar problems, but much worse than what I normally experience.

I have done some research on the internet (yes, I know, that only puts strange ideas in people’s heads….) and I have spoken to several people who had similar treatment to JD and have been given Ritalin or Adderal to help them to cope with the symptoms and have found it very helpful. I am probably way off the mark here but I am wondering if this is an option for JD as well. After all, ADHD is related to brain-problems in the exact same area as where JD’s tumour and treatment are.

Obviously I do not know if this is all caused by the effect of reducing the steroids or by the damage the radical radiotherapy has done to that area of her brain. We are due to see the oncologist again in June but I feel something needs to be done sooner than that.

I think I might need to contact the neuro-oncology nurse to see if this is ‘normal’ or if something can be done to make JD’s life (but also mine!) easier.

25th Mar2009

Treatment photo montage

by Dutchcloggie

We took a picture nearly every day of the treatment. As you can see, there is not much change in how she looks but you can certainly tell when she was having a tired day!

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

09th Feb2009

A make-over

by Dutchcloggie


This weekend, JD finally plucked up the courage to have her hair cut off. It was a difficult decision that had been put off a few times already so I am proud she finally went. I think it looks a lot better now. Somehow, the long hair made her look more ill, in my opinion. Obviously, with half a head of hair, she still looks like she is obviously having some kind of problem but it somehow looks much better to me. And I love running my hands through short hair. There still are a few wispy bits on her head at the front but most of it is gone. She has left the hair on the back of her head, if anything because it is actually quite cold without hair! So tip from the top: don’t have chemo or radiotherapy in the winter if you are going to lose your hair! It is cold!

Only 8 treatments to go. So far JD is doing great. None of the terrible tiredness we were warned about, no terrible headaches or anything. I guess it is not surprising that JD isn’t too tired because she doesn’t really do much during the day. That is not a bad thing! I just mean that if you have a very busy life with work and kids, you are going to notice much more that you are unable to do certain things. But if, like JD, most of your time is spent at home anyway, working on the sofa on a laptop, you are not spending a lot of energy anyway so it is not going to feel like you are using a lot more energy to do the same things you always do. I suppose in this case, that is a good thing! Yay for working on the sofa!

The only thing is perhaps that she is more forgetful and finds it hard to organise more than 1 thing at the same time. But apparently that is quite common with RT to the head and that should go away a few weeks after the end of treatment.

I am looking forward to the end of this. I am looking forward to things getting back to normal again. My bosses have been great in the past few months & weeks, giving me all the time I need to get to hospital and whatever else I need. It has made me a lot more stressed as I don’t want to let my bosses down after them being supportive but I also need to be able to put JD first without feeling I then MUST go back to work in the evening to finish work off all the time. After all, my bosses knew I would need time and they offered me that time.

I am looking forward to hearing the radiotherapy has worked and the bastard tumour has stopped growing for good.

29th Jan2009

Another radiotherapy update

by Dutchcloggie

A post by JD

Hi all,

Just to let you know that the joint pain has gone. In the end I only had two sleepless nights with the painful knees and hips. I don’t know what caused it other than ‘steroids’ but I’ve had my medication fiddled with and I’m feeling much better. Much less tired and much less bloated (although there are only two pairs of trousers that I can currently fit into – hurrah for elasticated waistbands!) So maybe I am still quite bloated and not realising it. Never mind. I’m sure that it will all disappear eventually. I do feel a little thinner since reducing my steroids. The good thing is that I’m not feeling as tired as I did last week. I’m sure that has something to do with the medication also. I haven’t been having any of the mini-seizures which may have something to do with the medication adjustments also. Who can say? It’s all a big mystery.

Anyhoo…the hair continues to fall out and the scalp is still hurting but I am at a friend’s house and I can’t start letting my hair fall out all over her nicely vacuumed carpet. I will put my nice new hat on instead. DutchCloggie hasn’t stolen it yet, which is nice. She isn’t a hat person (or particularly into wearing stripes).

I had a review yesterday and the nurse said that I was doing really well. If you are about to start radiotherapy I can thoroughly recommend going to the gym and getting fitter because it will help with the tiredness. I have found that I am able to maintain my usual schedule to a greater extent i.e. go for longer walks without being totally wiped out afterwards. But it’s always nice to have a little nap when I get home. When isn’t it nice to have a nap though?

I will leave you with a quite amusing story/picture (or at least I thought it was – no flaming for my poor sense of humour please – no injuries): Lorry found hanging out of ferry

26th Jan2009

Radiotherapy hair loss

by Dutchcloggie

JD has now started to lose her hair properly. Pulling it out is as addictive as popping bubble wrap plastic!

We were told it would only fall out where the radiotherapy beam hits her head and where it leaves her head again but unfortunately this seems to be almost her entire head. Hairloss was expected but not that it would most likely be permanent.

The booklet we were given did mention that hairloss might well be permanent when a high dose of radiotherapy was given but we did not know that JD is indeed getting a ‘radical dose’. Only found this out the other day when I asked the nurses where exactly the hairloss would be. They showed me with JD on the table and he facial mask in place, just before the treatment.

Once we left the room, I casually mentioned that I had read the hair loss could be permanent in some cases. Would this be the case with JD? When all 4 of the radiotherapy-staff nodded their heads at the same time, I realised things were a bit different than we had assumed. They said JD is on a radical dose because she is young and healthy and she can take the physical hit. Good. They told me the radical dose is not related to how ‘bad’ the tumour is. Good. But they did say to expect the hairloss to be more or less permanent. They told us: If you assume it will be forever, then it can only be better if there is some growth again later on. Rather than expecting it to grow back and then not seeing any new hair!

Hmmm….that puts the Wig Question in a different perspective I reckon.

22nd Jan2009

There goes the hair

by Dutchcloggie

And just like that, from one day to the next, the hair started to come out. JD has been pulling at it for a few days, wondering when she would start losing it. But nothing. And then suddenly last night she grabbed some hair and it just came off. Needless to say we spent the rest of the evening plucking at the hair until nothing more would come out. So far it is only in a single spot, where one of the beams goes in. it is the size of a 50p coin. I am sure over the next few days, more hair will start to fall out in the other 5 places where the beams hit her head (3 beams in total and she’ll lose hair both where the beam goes in and where it comes out again).

I don’t think we are too upset (yet). We were expecting this to happen any time now so now we can just get on with it. I shall just have to give her extra kisses on her bold patches to protect them from evil!

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