05th Jan2009

Radiotherapy today

by Dutchcloggie

A post by JD

I have my first treatment of radiotherapy today at 4:20pm. I have been waiting for this date for quite a while now and I just want it all to start properly. I’ve had all of the planning appointments and have had the mask made etc etc but have been waiting for today to come for about a month or so. Traveling to the hospital will be tough (as I can’t really drive at the moment – I’ll find a way) but there is good public transport. And I have some friends who have agreed to give me lifts and put me up for the night. What wonderful people! I’m not sure how much I’ll blog about it as I’m not big into diary-keeping/blogging/record-keeping but we’ll see. Speak late

05th Jan2009

Back from the first radiation treatment

by Dutchcloggie

A post by JD

Just had my first radiation treatment today. It took a while to check everything but in the end it was quick and painless. It will be quicker tomorrow. Odd having the nurses say “see you tomorrow” and I was like “oh yeah great” because I forgot it was the beginning of a six week slog. They’re lovely people but I don’t like being there.

There are limitations to what I can and can’t do which irritates me no end. I have had a few mini-seizure things due to the steroids which means no driving. I should surrender my driving licence but I really don’t want to because getting it back from the DVLA will be a nightmare. I do need a lift to hospital every day but I do go to the gym on my own a lot so being on my own on public transport isn’t really the issue. If I fall over or have a seizure on my way to be zapped I may get taken to hospital (the wrong hospital) and miss my appointment which would be BAD. My house is opposite a hospital which is not the right one. Don’t ask me why I can’t be treated 100m from my front door…

My Dad had radiotherapy for salivary cancer and he went very green and crusty all over his face which was absolutely revolting. I’m happy that I shouldn’t go green and crusty according to the nurse. I may lose some hair, but that will be ok because it is only hair and I already have some bald spots from my surgery where I picked the scabs (bad JD – no biscuit). I’m concerned about losing some of my eyebrows but I’ve already roped in a friend skilled in the art of makeup to help me to not look so weird. Dutchcloggie wants to draw them in with a felt tip but she’s definitely not allowed. Hopefully no monobrow for me!

I’ll check in later.

JD

06th Jan2009

Second radiation treatment

by Dutchcloggie

A post by JD

 

Off to the next radiotherapy treatment shortly. I’ve had a productive morning putting all of my appointments into the computer and letting my fingers go cold. It’s somewhere between 0 and -6 today apparently. Cracking. Dutchcloggie bought me a nice blanket for Christmas (with sleeves – image search for ‘Slanket’ if you’re interested) but I haven’t managed to take it out of its bag this morning. I don’t know why I’m bitching about being cold when I have a vest, shirt, jumper AND available blanket and heating. COME ON JD – SORT IT OUT!!!!!

There’s only 30 radiotherapy sessions and 3 review sessions so it’s not all that bad. I woke up with a headache this morning but I’m not sure how much of that was my brain assuming that because I had been zapped yesterday that I should have a headache today. Silly brain. Maybe it is a caffeine deficiency? Coffee time!!!

Has anyone else cut out coffee and tea whilst taking steroids? I thought about it but swiftly dismissed the idea as I enjoy my coffee too much. Anyone have any thoughts?

11th Jan2009

Faintly concerned

by Dutchcloggie

JD did not get any radiotherapy on Friday because the machine was broken. they told us they would simply add the missed treatment at the end of the whole procedure. That way she would get the 30 required treatments. Intersting how that seems to work like that.

So far there are no real side effects yet apart from the first real headache this morning. Then again, that might just be a ‘normal’ headache. How can you tell?

The ‘fainting’ spells have increased quite a bit in the past few weeks. So much so that the nurse thought it would be a good idea for JD to have a bloodtest to see if there was any indication of a lack of Glucose in the blood that could cause it. I personally don’t think that is related much but we’ll see. They are not really fainting spells anyway. More like a 30 second episode of feeling faint, trembling on her left side and an inability to speak. It happens ONLY when she gets up but not every time she gets up. There is no pattern that we can discover to help put a finger on why it is happening.

A few minutes ago, she had another spell. Got up off the sofa and within 10 seconds of getting up, she started to tremble on the left side and her eyes went all funny. I got up and wrapped my arms around her to support her. She started shaking more and I asked her if she was OK or if she wanted to sit down. Unable to speak, she merely groaned whilst going limp in my arms (but still able to remain standing with my help). Then it was over and I sat her down for a minute. After that, things just got back to normal in 2 minutes. Weird. And scary. For JD more so than me because what the hell is going on in the brain when that happens? I would be scared to death!

Anyway, it does prove once more that it IS better that JD does not go to the Hospital on public transport as the plan was originally. I mean, what if this happens on the train on the street and someone calls an ambulance or she falls over and misses a treatment because she misses a bus or train?

And so I drive her every day. I kind of like it that way. So far, we have been shopping and visited friends on our way home after the treatment. And we have nice chats in the car.

I think I am doing OK with all this. Easy for me to deal with it as it is not my brain being affected. I think that once JD will start feeling really ill from the treatment, I will become more angry and emotional. At the moment, she’s not really ill from it and so the treatment is just part of a routine, not so much part of an illness. But having to see her lose her hair or be sick with headaches and nausea will be hard for me to take.

It is hard to describe but this whole thing is feeling strangely ‘exciting’ to me. Not in a ‘cool!’ kind of way though. As I have the attention span of an gnat, this whole thing is never boring and always requires me to be alert and pay attention to everything going on around me. It keeps me on my toes. Is that weird? I mean, when I was young and insecure in school, I used to wish for some kind of illness or injury (nothing too serious of course, something that required a plaster and some crutches for a few weeks. Don’t laugh, I KNOW I am not the only one with such thoughts when I was young.) that would mean my peers would have to be interested and nice to me. JD says she had the same. I guess this is punishment for ever thinking like that. And yet, in a strange sad way, it is kind of ‘exciting’ to see so many people interested in myself and JD. I know I don’t need to be reminded that I am a nice person that people care about and yet, it makes me feel good that friends and family want to know how things are going. It also makes me smile that it is sometimes a useful thing to use when we want to get something done a bit sooner or with a little more sympathy (see my story about getting my boiler fixed last month….)

Is that sad and selfish? I don’t mean it to sound like that and obviously I do not mean that it is cool. I guess you can compare this ‘excitement’ with adrenaline: that flows both when you are having fun and when you are scared. I guess you can be ‘excited’ in anticipation of both good and bad things.

I guess I am not explaining it very well and I now sound like a freak.

Update: Some clarification is required I feel, or else people might think I am trying to say that I like the attention I am getting because of JD. That is not what I mean.

I have ADHD so I have a very limited attention span for anything and things bore me greatly really soon. And with this illness, there is something happening all the time, something new going on, something new to organise, some new symptom to deal with, some new doctor’s visit to digest, some new emotion to learn to deal with. I guess that is what I mean: it keeps my brain busy and focused on the things that need to be done. And especially for people with ADHD, that is something you don’t get to feel very often. So perhaps that is what I mean. I don’t know really.

13th Jan2009

Radiotherapy update

by Dutchcloggie

A post by JD

Radiotherapy has been progressing nicely. I had Friday off as the machine was broken (eeek) so I will have another appointment at the end of the six weeks. No side effects yet apart from a headache (which if I have to be honest isn’t that bad at the moment). No hair loss yet but apparently that starts after the second week so we’ll see…

The fainting is continuing but I have an appointment to see the nurse specialist about it. I have had head-rush experiences when I stand up with shaking down my left hand side. When I have the shaking I can’t grip and will drop whatever i’m holding in my left hand. The nurse suggested it might be something to do with the steroids (everything has something to do with steroids it seems) and maybe my levels can be reviewed as I feel that I’m taking rather a lot. Again, we’ll see…

I am also in the process of sending my driving licence back to the DVLA. With all the fainting and lack of grip I don’t think it is a good idea to be charging up and down the motorway in my condition – and neither do the doctor and nurse. Dutchcloggie has an arrangement with work so that she can take me to treatment and back, which is very nice indeed. Anyone else have experience with the DVLA?

15th Jan2009

Radiotherapy side effects

by Dutchcloggie

A post by JD

I woke up this morning with a nasty headache and haven’t been able to do what I wanted to do. Needless to say this has made me miserable and has made me eat more food. Bad JD – no biscuit! Or rather, no more biscuits…We don’t buy biscuits or chocolates anymore as i’ll just scoff them as I have no willpower. I have put on (what I feel) is a vast amount of weight but the nurse said to me yesterday that it will fall off as I cut down on the steroids. I have permission to do this now and increase the anti-epeleptic drugs to stop the weird left hand side mini-seizures I seem to be suffering from when I stand up. Very odd. Still have the headache but I think that a paracetamol or two and a cup of tea might help the issue. Speak later.

20th Jan2009

How clean is your house

by Dutchcloggie

A post by JD

Hi all, Woke up this morning with the worst headache that i’ve had on radiotherapy (thus far). Not completely debilitating but still painful enough to have a day in the PJs watching ‘How clean is your house?’ And do I feel smug that my house is cleaner than some of these people? I sure do. I confess to being a bit of a hoarder but not to the level of these mingers. Lordy! How can these people live with all the cat hair and dead (and living) insects? Ikky! I suppose that we all have little visitors in our houses that we don’t know about. But not the wee encrusted around the loo that hasn’t been cleaned since the person has moved in – about ten years. Smelly boys. Double ikky. Shudders. JD

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

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!

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

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.

27th Jan2009

Angry!

by Dutchcloggie

Perhaps this is not the place and platform so this post may vanish in a few hours/days but I am angry! Really angry. I mean like I-want-to walk-up-to-someone-grab-her-and-shake-her-around-seriously-whilst-shouting-expletives-at-her-kind of angry.

JD needs to be driven to radio therapy every day because she is not able to take public transport in case she has a seizure on her way to the hospital (this might mean she would miss treatment). And so I organised with my boss that I can take every afternoon off work after 3pm so we can drive to the hospital (45 minutes) and get JD zapped.

Next month, my boss asked me if I cold perhaps be at a film shoot for work. I said I would try to get someone else to drive JD to hospital and back. Surely a one-off should not be so hard to organise for someone right? After all, if you love someone and care for them…..

I remembered that JD’s mother had said she would do anything to help. So I asked JD to call her mother and see if maybe she wold be prepared/able to drive to our house, pick JD up, take JD to hospital and then drop her off home again. Granted, this would be quite a drive for her mother as she lives about 90 minutes driving away from our house. But even so, you would think she would be able to do this for her daughter who is having treatment for a brain tumour. And remember, this is not tomorrow. No, this is more than a week from now.

I should have known the outcome. Nope. Can’t do. Why? Well, because she has to teach some kids how to ride a horse. Yes, I understand that is what she does for a living but there is still plenty of time to try and rearrange some of these lessons right? After all, it is her daughter we are talking about. All she was asking was for her mother to help out for an afternoon. Nope. Too busy. Not even saying that she would try to re-arrange the lessons. Nope. Too busy.

Like she was too busy to talk to JD on the phone the other day when JD wanted to tell her about her hair loss. Too buy because she was ‘making herself breakfast’. Like she was ‘too busy’ for the past 2 years (yes, TWO YEARS!) to visit us in our new flat. In the time my parents visited from Holland 3 times, JD’s mother, from a hour driving away, visited exactly ZERO times.

I respect JD’s wishes not to tell her mother exactly what I think of her extremely self-centered behaviour but it is getting harder and harder. I want to tell her to stop thinking the world revolves around her and that other people are not merely hangers-on to her life.

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

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.

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

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

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!!

09th Mar2009

On jobs and task lists

by Dutchcloggie

I have had another good thought about my last post about jobs and tasks that JD ‘has to do’. I think I have been totally unclear about things. So, here’s my attempt to clarify things.

I do not set JD tasks around the house whilst I am at work. Her To Do List contains entirely of things that have nothing to do with me. They are things relating to her PhD project (small jobs to help her get started again after her time off for treatment), to her life (order medication, pay her credit card bills), to HER responsibilities she has voluntarily chosen to take on such as the fencing committee etc. They are not tasks I set her.

All these jobs are written down on Post-It notes that are stuck to the table. And every day, she just picks some of these that she will try to achieve on that day, no matter how big or small. If we do not write every little task down, she’ll forget.

I love JD a lot and when I see the amount of things she has to do (some of her own choice, others simply things people have to do in life, such as financial admin etc), I am afraid she will drown in it and so I am trying to help her achieve as many of these tasks as possible by encouraging her and writing them down and going through the ones she wants to do for the day.

When I get upset about JD having so many tasks on the go, it is because I am afraid that JD feels like she is drowning in having taken on too many things. And that in turn upsets and frustrates me. I want to help JD stay on top of the things she has taken on so that she doesn’t feel too overwhelmed. I am not annoyed or frustrated if she does not do stuff as such. I am upset because I am afraid she’ll feel like she failed. And since I am not good at keeping emotions under control when it comes to my worries about JD, in a strange way, it then comes out in frustration directed at JD. As if she is not doing enough to make her own life easier. I can not make her own life easier for her as they are things SHE needs to do. And this kind of frustrates me because I would LOVE to take it all away from her and do all the jobs for her so she can clear her mind of responsibilities and feel relaxed and not pressured by all the things she needs to do.

I am not fussed about ‘equal shares in household work’.
Yesterday for example, I cleaned the entire flat and cooked Sunday roast and JD spent the entire day doing the ironing. I was very happy at the end of the day as I felt we had achieved a lot together. House clean, ironing done, food cooked. All ready to start a new week. It doesn’t matter to me that I may have done a lot more work because I know the ironing was a big effort for JD.

It is not about what is achieved, it is about the willingness to put effort in. So if all the effort yields only a small result, I am not upset and the failure to finish the task, I am happy as long as the effort has been made. Does that make sense?

I hope this sheds some light on what I actually mean. That I am not unreasonably asking JD to do lots of things and that I am not annoyed with her for not ‘making my life easier. I am really quite a nice person :-)

20th Mar2009

It has a name: Somnolance Syndrome

by Dutchcloggie

The oncologist warned us that Jane wold be feeling the side effects of the radiotherapy for probably another 5 months. He said she would notice things such as tiredness, memory loss and somnolence. We nodded and pretended to understand. We thought somnolence was just related to sleeping. Well, it kind of is. But Somnolence Syndrome is also the exact reason for JD being almost completely unable to remember to do stuff.

I can call her from work at 1.59pm to ask if she is going in to town (as she said she planned to do) and she’ll say: I’m going after the 2pm news. Then, when I ring again at 3pm, she is still at home because she got side tracked and then forgot to go. In a single minute! I then have to stay on the phone as I tell her: if you still want to go in to town, get up now (I wait for her to get up) put your shoes on (I wait as she puts her shoes on), pack your bag (I wait as she packs her bag), take your phone and wallet and walk out the door (I wait until she has locked the door behind her). If I don’t do this, she can be distracted at any stage of the process and end up doing something different altogether.

In the past few weeks this kind of behaviour has led to me being really angry at times and feeling really bad about that anger. More out of frustration as I just can not understand how you can forget something in the space of a second. It has also made JD upset. We both failed to grasp the full impact of Somnolence Syndrome. We did some research on it last night and we were both quite shocked.

The principal symptoms were those of excessive drowsiness, feeling clumsy, an inability to concentrate, lethargy, being mentally slow and fatigue. The unexplained and overwhelming nature of the symptoms was a cause of anxiety. Somnolence syndrome is a collection of symptoms consisting of drowsiness, lethargy and fatigue. Forewarning patients and planning supportive management around times of drowsiness and fatigue can help to reduce the anxiety that these symptoms cause.

It explains a lot. I now feel more able to accept this behaviour. I feel more able to understand and deal with it. As long as JD does not mind me holding her hand, I will gladly guide her and help her keep her focus on simple stuff.

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!

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.

07th Apr2009

Any change?

by Dutchcloggie

I emailed the neuro oncology nurse yesterday to let him know the problems JD is having (basically I sent him a slightly amended version of my previous blog post. See, blogging has its uses).

He rang me about an hour later to discuss it with me. He explained once more that it is all pretty normal but when I told him JD has morning headaches, he said that it was probably because the steroid dose is now too low. JD is on track to reduce her steroids little by little but the nurse-man said it is likely that JD still has swelling in her head and so reducing the steroids might actually not be a good idea right now. He said it might be the reason why she has gotten worse in the past few weeks instead of better.

And so the dose has been put back up again. Not to where it was at the very start but back to where it was a few weeks ago, before she started to get slower and more forgetful.

Hopefully this will make some difference. Either way, he made an appointment for JD to see him in clinic in 2 weeks time. Goodo. He kept saying that I need support too. Bu what with? My inability to accept JD is not able to keep to her promises, no matter how well she means (I’ll do the ironing today, I’ll order my own medication from the GP today etc.). I just need to be more patient and not get angry so that JD does not feel she is letting me down. It is hard enough or her without me being angry or upset.

A few days ago, I found a Low Grade Glioma support group on the internet and I just wrote a very long email about how I feel. The support has been really nice and helpful. I know I am not alone out there. I know JD’s symptoms are normal, I know I should be more patient. But it is still nice to have someone tell me they understand it is not that easy and hat they know how I feel.

Oh well, onwards & upwards (hopefully).

12th Apr2009

After the radiotherapy

by Dutchcloggie

We were warned about the side effects of radiotherapy to the brain. Tiredness, loss of short term memory, somnolence, loss of concentration. The oncologist tells you what to expect and you sit there and nod, thinking it will all work out in the end.

During the 6 weeks of treatment, JD did not really have any problems. She got tired and started losing her hair after 4 weeks. But no major problems. When the treatment was finished, we were told to expect the side effects to get a bit worse, until about 6 weeks after. And so we were not that alarmed when she started to get more and more forgetful. Nor when she was less and less able to concentrate. Or when she started to have problems with wetting herself in public. At the same time she was reducing the amount of steroids she was taking and headaches soon returned, indicating that things were not going all that well.

In the end, it was me who decided that things were not going well and were in fact getting worse than we were told to expect. Maybe selfish but I was no longer able to understand what was going on. AB would forget to do things she promised, she would not take me in to account in anything she did do (have dinner before I was home from work just because she felt hungry, make appointments with people on days that I already had something planned etc.) She also is unable to relate to her own emotions and is genuinely confused by questions that require a decision, be it a factual one or one based on emotions. She will give the answer you hand to her (‘You want red?’ Yes. ‘Or would you rather have blue?’ Yes, blue would be better.)

When asked why she says certain things or why she behaves in a particular way, she will look away, get distracted and (conveniently?) forget the question. This is all beyond frustrating for me and has brought me to the edge of reason with her at times.

I realise this is more my failure to deal with it than JD’s fault for being like this but either way, I struggle to deal with it. Some days I am able to just ignore it but on days that are perhaps stressful due to work etc, I might not be so patient and snap at JD. It makes me feel bad.

13th Apr2009

Helping or rude?

by Dutchcloggie

JD is currently slow in everything she does. Her thinking and her acting. A quick shower is now an alien concept, eating with the TV on is impossible as she will end up watching TV with her fork suspended in mid-air on the way to her mouth as she is distracted by the box. Getting ready to leave the house takes forever since everything is distracting or requires a decision in some way (what to wear, what to eat etc)

Unless I help.

And this is a difficult thing. Do I wait until JD finishes the task at hand by herself? She is perfectly capable of getting dressed on her own. But it will take an age. So if we have to go somewhere, and I say: we need to leave in 30 minutes, I will frequently find her still undressed by the time it is time to go. So, what do I do? Keep reminding her to get going? Or do I say: Shall I give you a hand getting dressed so it will all go faster?

I feel bad for helping her to get dressed for example as she is physically able to do it herself. And mentally as well. it is just that it all takes forever and sometimes we don’t have forever.

Another thing that I am unsure about is how talk to other people about JD when she is right next to me. When we go somewhere and people ask how she is doing, what do I do? JD is quite slow in processing and not always able to make sense of the questions. So frequently, instead of answering, a long silence follows. People tend to be confused by this and end up looking at me. And so I answer. I don’t want to treat JD like a child or a mute but people then start talking to me about JD as if she is not there. I don’t want to be rude to people so I talk to them. JD will mostly just stand next to me, looking ever so slightly confused and I kind of feel bad.

14th Apr2009

So what is it exactly?

by Dutchcloggie

The doctors tell you what it is. A tumour. An Astrocytoma. It is difficult to distinguish between tumour and healthy brain tissue. I never understood that bit. A tumour is one of those round things, right. You can see it clearly on a scan. Or at least under a microscope, it should be clear that you are looking at tumour cells. But apparently in JD’s case, this was not possible. The biopsy was inconclusive and the Astrocytoma diagnosis is based on ‘best guess’.

17th Apr2009

Better days?

by Dutchcloggie

The past few days have been quite good actually. We went away over Easter and did nothing. No pressure, nothing to do, nothing to forget. That has been really nice for a change. It helped us to get a bit closer to being a couple again, rather than patient and carer.

I think I have now accepted, as much as possible, that the best way for me to deal with this all is to expect absolutely nothing from JD. I don’t expect her to get out of bed, I don’t expect her to make herself lunch. Nothing. This way, anything she does do is positive. And so I praise her for it. But it is hard not to be condescending when praising.

Another trick is really to use repetition. I will not just say: Can you empty the dishwasher today. Instead, I’ll say: Are you emptying the dishwasher today and then she’ll say yes. A few minutes later, I just say: Do you remember what you are doing today? And if she doesn’t remember, I’ll tell her: you were going to empty the dishwasher. And I repeat this trick until she has remembered it at least 3 times.

This seems to have worked so far with small things such as having lunch and, well, emptying the dishwasher.

I realise that the whole household and relationship is basically carried by me and that is hard to deal with sometimes. I do not just have to remember my own life & appointments but also hers. This is hard because I don’t always know she had an appointment in the first place.

Another trick is that every Sunday, I sit down with her and go through her emails. Then I list the emails that require action or a response and then I simply type the response for her (whilst she tells me what the response should be of course). That way, hopefully, she won’t miss anything important or fail to do something someone has asked her to do (She is a member of a few clubs but also social emails from people asking how she is really require a polite response).

It is strange to treat your partner like they can not remember or do anything themselves and it is important to remain vigilant to laziness creeping in (She just rang to ask where her wallet was but she had not actually bothered to look anywhere: she could not see it from the bed and decided she would ask me instead of getting up to look for it. That’s just laziness :-)

20th Apr2009

When she’s bored…

by Dutchcloggie

Yesterday, we went somewhere that both JD and I had been looking forward to. We had tickets ad decided not to go too early since JD would not be able to last all day anyway so better go for a few hours and have fun than go all day and be exhausted. After about 45 minutes, JD said she wanted to sit down. Fair enough. I asked: Are you bored or tired. And she said: both, really. For some reason, that kind of pissed me off. I was really looking forward to going and I wanted to see everything there was to see. So I said: well, if you are tired then we’ll just go home, but if you are bored, then I am going to go and walk around on my own for a bit and see the things I want to see.

So I left her, went away for about 30 minutes and then came back to check on her. She was still a bit bored. Somehow I was pissed off about that. She knows I would do anything for her and go home right away if she was tired. But instead, she spoiled my fun by saying she was bored and did not really want to walk around to look at stuff. I suppose I need to accept that she probably is not able at the moment to take in to account how this makes me feel and that she is not able to say: OK, I might be bored but I know how much YOU like it so I’ll come along to make sure you have fun, at least for a little while.

In the end, I only saw about 25% of what there was to see. I know I could have left her sitting with her coffee and just go off for about an hour on my own but you just don’t really do that. Well, I don’t. I’d feel guilty.

So am I right to be pissed off with her? Should she have made a bit of an effort for me for a change? After all, she said she wasn’t tired. Just bored.

On the positive side: we got free tickets to part of the show. The tickets cost £8 and we had no cash. I looked at JD and she nodded in quiet approval. And so I said: Please, can you let us in? My wife here has been through a rough time recently (I pointed at her bald head and scar across the skull) and this is the first time she is on a day out since treatment. The man squirmed in sympathy and said: OK then, in you go!

Score! Might as well use the bloody tumour for something good hey! So far we got a free hotel upgrade, free entrance to a theatre and, oh, something else I can’t remember. Mind you, I DO always check with AB before I appeal to people’s sympathy. After all, she’s not some kind of commodity. Not a ticket to free stuff.

22nd Apr2009

No response

by Dutchcloggie

I have now accepted that JD is not really able to remember things that she said she was going to do. It no longer irritates me or makes me upset.

What I can not get used to though is the continued lack of empathy towards other people (read: me). In normal relationships, and with us before the radiotherapy, if one of the partners hints at feeling unhappy or happy, the other partner usually picks up on that with a response or question. But at the moment, I could well be living on my own when it comes to that kind of stuff.

For example, I had my hair cut yesterday and I really really hate it. I want it cut again as it makes me feel really unhappy so I am off to the hairdresser again this weekend. I came home and needless to say JD did not notice I had a haircut. Fine, happens to many women every day. But when I said I had it cut and that I was unhappy with it, she did not say anything, did not ask why, did not say: it’s not so bad, or even; yeah, it is not very nice. It was just like she did not hear the part that included any emotion or emotional response. So she heard me say I cut my hair but the rest got a blank stare and she turned towards the TV.

So much for comforting your loved one.

Also last night, a friend told me I had said something that made her really unhappy. Good for her for telling me about it. I felt bad as I did not mean to upset her at all. So I mentioned it to JD. Who looked at me and said: I’m hungry.

This morning, I was having a shower, JD was in the bathroom as well and I mentioned I was not feeling happy today. ….silence….. I might as well have been alone in the bathroom.

It kind of leaves me feeling alone. Sure, I can mention it to friends who will be sympathetic and so on, but I miss having interaction with my wife.

24th Apr2009

It breaks my heart

by Dutchcloggie

Last night, JD went to training at her fencing club. She used to love fencing and was quite good at it, winning a handful of local and club competitions. Fencing is physical chess. Perhaps not the best sport to do when your focus, concentration and handling speed have been severely affected by radiotherapy. But it is also important that she keeps busy and involved with ‘normal’ life. So I take her to training every week. The people at the club are starting to understand what the problem is with her and are taking care when they fence her. They don’t fence at their normal speed and slow things down greatly, turning it in to more of a lesson and play-session than a genuine fencing bout.

As I sat there watching, I felt my heart break. I realised I was watching someone with brain damage trying to do things that are no longer possible (well, not until the side effects have gone). She just stood there with her foil pointing forward. Her own fencing clothes fit no more so she’s wearing ill-fitting club-kit that is 4 sizes bigger. She hunches forward. She has no handling speed, no concentration, no ability to react to her opponent. Imagine watching a fencing bout in slow-motion. Her opponents are considerate and slow down as well, leaving her time to decide on a reply to a move they have made. But it is not fencing. It is something different altogether. She forgets to salute the opponent before and after the bout (a mortal sin in fencing), she walks away without shaking hands (another punishable offense); She is slow to get ready so that everyone else has already started their matches and AB is still putting her helmet on, making her opponent wait and wait.

I cringed every time it happened because I was afraid that people who did not know her problem would think she is a rude woman with no respect for the fencing rules. She isn’t.

Surely she is aware of the fact that what she is doing is not really fencing and that people are ‘letting her win’? Or perhaps the lack of emotional response is currently a blessing in disguise: she doesn’t seem too upset about it. Maybe because she is not really able to sense many emotions.

I have tears in my eyes thinking about it again. What has happened to my beautiful wife? Funny, sporty, quick witted, caring, loving, considerate, articulate. I miss her. If I was convinced this would all be temporary, I would not be so upset perhaps. But some things are permanent. We just don’t know which things. And how bad it will remain.

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!

03rd May2009

Tennis in the park

by Dutchcloggie

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.
05th May2009

Things can only get better

by Dutchcloggie

How do you know things are getting better? How do you know she is not just having a good/bad day?
Last week, I asked JD to start making dinner before I got home so I could go to a meeting of my sports club. And lo and behold, when I got home, she had made a start with dinner, chips were in the oven and the dishwasher had been emptied.

A few weeks ago, that would not have happened. So, I am thinking that means there is improvement. She remembered to do what I asked her to do and did it.

But then again, last week, I asked her to go to our doctor so she could pick up HER prescription which I would then take to the pharmacy. I stressed how much I would appreciate her doing this as I was very busy already and I am sometimes struggling to keep track of all the things in both our lives that I need to do and remember. JD can play sports for an hour or so, so a 15 minute walk to the doctor was not asking a lot. She could easily do it. I also stressed that if she did not go and pick it up, she would be out of medication at the weekend and that it would be her own responsibility to sort it out.

So I tried the nice approach, I tried the ‘it would mean much to me’ approach, I tried the ‘it is really urgent’ approach. I rang her during the day to remind her to go. Twice she said she was about to go. But when I came home from the office, she had not gone. I was angry and disappointed. Especially because I had told her it would make my life so much easier if she would go and pick the blasted thing up.

Sometimes I feel taken for granted. She says she loves me. I know she does. I love her too. Lots.

So what is improvement? The fact that she can play sports for an hour? The fact that she remembered to empty the dishwasher? Or was that just a fluke?

14th May2009

High grade or low grade tumours?

by Dutchcloggie

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.

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!

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?

09th Jul2009

We’re going on a holiday

by Dutchcloggie

Not yet unfortunately but in August! Yay! 2 weeks away to France. My sister is hoping to give birth to kiddie No2 then as well so once we are on the mainland, we can just drive on to Holland if she is kind enough to deliver whilst we are in Europe.

Other than that, the plan is to go camping in Brittany and cycle parts of the Nantes – Brest Canal. That is a nice and flat route to keep AB happy, and nice and cycling to keep me happy. We have ordered a nice book from Amazon about the canal and a map of Brittany so we are all set. Now all we need to do is decide where along the canal we will set up camp. We won’t cycle the whole thing but just day trips here and there. I am BEYOND excited.

In other news, JD and I have gone back to the gym for the first time since the end of the radiotherapy and I am SO proud of JD. She was focused, put effort in, sweated loads and even signed up for a 6-week fitness plan specially put together for her. Last time we went to the gym, she was unable to concentrate for more than 2 minutes, kept stopping and did not sweat at all since she put no effort in: lost concentration before she even got going.

All these little things make me feel really positive about the future: she’s really getting better. Yay. Bring on the holiday!