29 January 2009

Radiotherapy update

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

27 January 2009


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.

26 January 2009

Radiotherapy hair loss

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 dosis of radiotherapy was given but we did not know that JD is indeed getting a 'radical dosis'. 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 dosis because she is young and healthy and she can take the physical hit. Good. They told me the radical dosis 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.

22 January 2009

There goes the hair...

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 ot protect them from evil!

15 January 2009

Radiotherapy side effects

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.

13 January 2009

Radiotherapy Update

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?

11 January 2009

Faintly concerned...

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 frmo 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 aruond 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 beter that JD does not go to the Hospital on public transport as the plan was op=riginally. 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 nat, 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 thoguhts 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 somethign 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.

06 January 2009

Second radiation treatment

Off to the next radiation 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 radiation 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?

05 January 2009

Back from first radiation treatment

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.