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!
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.
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
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!!