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!

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.

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.

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.

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 🙂

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’.

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.

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.

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).

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.