03rd Jan2010

2009: an overview

by Dutchcloggie

As it is a new year, I thought it would be a good idea to look back at 2009 in a really quick summary. So what has happened this year (and, more importantly, who cares about this kind of self-indulgent navel-gazing??)

January – June
JD had to have radiotherapy on her braintumour. Every day for 6 weeks we got in the car for an hour to have 10 minutes of treatment. We had been warned about possible side effects but let me tell you: radiotherapy to the head is fucking devastating. Only in September did JD start to recover from the damage. No concentration (and I mean: not even for 2 minutes!), extreme lethargy, forgetfulness to the point of forgetting to eat and forgetting what day it was, non-stop eating, depression, lack of initiative, self-centeredness, inability to understand emotions, both her own and other people’s, unable to plan more than 5 minutes ahead, not able to have a phone conversation with the radio on, the list goes on. We were not properly warned and for the first time since she was diagnosed back in 2005, I really felt like screaming, hopelessly desperate and unable to see a light at the end of the tunnel. I just could not see how JD would ever get better again. And I am not talking better from the tumour but just recovering from the damage of the radiotherapy.

Life just stopped being anything like it was before and I had a tough time living my own life as well as living JD’s life for her more or less. I don’t care if people think I am being selfish for saying it was difficult for me (after all, JD is the one with the nasty tumour) but it was. So there.

June – December
Life has a funny way of throwing things at you. In June I read something in a local rag about Spratton Folk Festival. It said all-female group Invocal would provide the local flavour to the festival. So I checked them out. Found they were looking for a singer. Agonised about it for days (am I good enough, I’m shit, really), got in touch, did not get the job but ended up as their ‘manager’ in the end.
No idea what a manager does so I just jumped in, started about 50 things at the same time, then drowned in ther amount of work I started and did not finish (ADHD much?) but managed to do some good stuff in between. (video, brochures, PR, general organising, whatever). The only thing I have not managed to do is book any gigs. Bit of a bummer really… keep working on it. (see how I managed to avoid saying I am talking about Invocal here!)

Anyway, it is absolutely lovely to be doing something in music again, even if it is not performing and playing. Sometimes I feel like a groupie and a fraud. But I just love being around music and people who make music. It just feels like a lovely warm blanket. The unexpected side effect is that I have also made some new friends and I have actually seen more pubs since June than my entire life before then. Yes, I have a social life. Well, I had one before but not in Northampton. Never got round to building a new one after moving here.

JD recovered well from the radiotherapy but has lasting trouble with her concentration and some remaining lethargy that may not go away. Unfortunately the RT did not help & the tumour actually changed in to a Grade 3 Astrocytoma in certain places which means it went from wholly benign to partly malignant. Bummer.
So she started chemotherapy in August. 5 days of Temozolomide per month. For 6 months initially. She will be on that for as long as it stops the tumour from growing. Which may be for the rest of her life. IF it stops it from growing. We’ll know after the first post-chemo scan in February 2010.

My sister gave birth to her second daughter, a tiny little puppet called Alessia. Hurrah. Now my folks are proper grand parents I am I am officially off the hook for providing the offspring. Phew!

That’s about it really. Other than a lovely holiday in France and erhm….lots of other stuff I have forgotten about for the moment.

Resolutions for 2010:
– Book more gigs
– Be more organised
– Go out more
– Make money & get paid
– Find a cure for AIDS & brain tumours

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.

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.

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 :-)