13th Mar2010

I’m alive!

by Dutchcloggie

So. After months of nothing, here is a new blog post. Really only because my mother told me off for not posting anything. Bit strange because she calls me every week as wel so there is nothing she does not know already! Nevermind. I guess I should be happy that she cares so much.

So what has happened since January?

Well, the best thing is that JD’s brain tumour treatment is finally working! The first 6 months of chemotherapy (Temozolomide, for those who care) has resulted in the malignant cells becoming undetectable on the scan and the benign areas of the tumour shrinking considerably. Yay! So for the next 6 months, she’ll continue with the chemo and hopefully things will keep improving.

JD and I went on a lovely snow trip to Andorra last week. Lovely snow, cheap booze. Snowboarding went quite well but I did fall over a few times. Nothing serious though. Next year I think I’ll take some lessons because I want to get better than I am now and it seems I am too afraid of falling to improve without some extra help.

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

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!

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?

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!

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?

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 :-)

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.

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!

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 :-)

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