14th Aug2011

Helping the Hospice

by Dutchcloggie

Text BEAN83 £5 to 70070 Grieving is tedious. It has been a little more than 2 months since Jane died and it is getting harder every day. The first few weeks I was numb. Now I am beginning to feel again and what I am feeling is not fun.

It is extremely cruel that someone as smart as Jane found her ability to think and study affected by a brain tumour. Because of its location in the brain, it mainly affected her memory, personality, ability to process information and give feedback on things she was asked. Still, between her diagnosis in 2005 and her death, aged 27, in 2011, Jane got herself a BSc, an MSc and nearly a PhD from Warwick University.

I get huge comfort from doing things that are related to Jane. Be it writing a blog about her or looking through pictures. I want to use this in a positive way. So I am raising money for the Cynthia Spencer Hospice.

The Cynthia Spencer Hospice cared for Jane twice. In October 2010, whilst I moved us into a new flat that enabled Jane to stay at home until the end, the Hospice looked after Jane and sorted out symptom control. After she came home, we had 7 wonderful months together in which we made a few final trips. 
 
Then, when the end was close, Jane returned to Cynthia Spencer Hospice for her final 10 days. The staff are fantastic and made me feel so much better in the circumstances.

I have decided to back to university next year so that I can become a palliative care nurse and make sure others get the same fantastic care when they need it most.

You don’t have to do something so drastic. You can just give money!
 
The Cynthia Spencer Hospice is NHS-funded but they need additional money from charity to pay for extra nurses and other things the NHS does not pay for.
 
I am hoping to do a number of things to raise money for the hospice. Every penny helps so even if you just donate your small change to this, it would be brilliant.

Please visit my fundraising page at http://justgiving.com/Bouncybean.

Alternatively, get your mobile phone and text BEAN83 £5 to 70070 to donate £5. You can obviously change the amount to anything up to £10. To donate more than £10, or if you are donating from abroad, go to the JustGiving page.

17th Jun2011

Ashes to ashes

by Dutchcloggie

At Warwick University today, a little bit of Jane was left behind

SJ scatters Jane's ashes at Warwick University

SJ scatters the first bit of Jane. Notice the M&S tea flask being used for this purpose.Unfortunately the ashes sank straight to the bottom of the lake so we decided on trying it again a little bit further out.

 

I transferred some of Jane’s ashes into a flask last night, ready to for today’s scattering. I created a rather large ash cloud of very fine bone ash. I think I may well have inhaled a substantial part of Jane in the process!

I scatter some of Jane's ashes

Graceful scattering of about half of Jane's ashes. We were interrupted by a guy who, even after we told him what we were doing, wanted to tell us about an orphaned goose that lives in the lake.

Walking across campus, I was suddenly struck by an immense sadness. This whole part of my life, Warwick University, is a part that only matters to me because of Jane. We had no shared ‘business’ there, although of course we have plenty of shared memories. I found it really difficult to explain to SJ that I really felt Warwick University would never again be part of making new memories with Jane. She said that I could talk about those memories with Jane’s friends so they would remain part of my life. But that is not what I meant.

I can not really explain it well but maybe it is something like this: In Leamington and Northampton, I was my own person, with my own things to do. And on top of that, we did things together. At Warwick University, I was always and ONLY Jane’s partner. I would only be there when Jane had some business at uni. When I picked her up. When I dropped her off. When I was meeting her for lunch. When I first met her there in 2003. When I came to see her friends.

So without Jane, there I felt completely lost. I felt rudderless. There was no reason for me to be there. And there will never again be a Jane-reason to be there, other than a reason related to her death (e.g. seeing her old friends, her old tutor, scattering her ashes etc). There will be no more new memories to make with Jane.

Even writing this now, I am crying. I don’t quite know why but it really upsets me that the thing that was such a massive part of Jane’s life, is somehow empty and meaningless to me without her there. It feels like another loss. Maybe because if I ever meet someone else, I might go camping with her. I might live together with her. I might do some of the things I used to do with Jane.
But I will never again walk along Warwick University campus with someone and feel that feeling of pride and belonging to someone who spent her entire academic life at a place she loved so deeply.

I guess it makes me feel incredibly sad that when I think about it, the thing that meant most to Jane in her life is something that now means precious little to me, since I have nothing to do with it anymore.

Jane Daniel's ashes in the lake at Warwick University

Jane's remains consist of very fine, dusty bone ash that floats on the water, and course, dense bone grit that sinks straight to the bottom. If you can find it, you'll find a little pile of Jane at the bottom of The Lake at Warwick University.

02nd Jun2011

In the end…

by Dutchcloggie

…it was peaceful. On Sunday morning, JD had trouble breathing and her skin turned a strange shade of blue, nearly purple. The nurses said this was a sign death was a mere hours away. JD’s mother came and went. And the waiting continued. Every once so often, JD’s breathing changed, became more shallow, more like snoring, then less like snoring. Her face returned to the normal pink colour, perhaps a little more grey than normal.

Our friends R&K arrived in the afternoon, all set up for the long wait. Ipads, beer, food, crisps. The hospice staff were fantastic in leaving us alone as much as possible whilst still checking JD was ok. As the day turned in to night, JD’s breathing changed a number of times. Looking back, I think she died a little every time that happened.

Around 10.30, I lifted JD’s left eyelid and saw her pupil had blown. And half an hour later, so did her right one. I knew she was no longer with us then. We held her hand, I crawled onto the bed and held her. And waited.

At 2am, R&K went home to sleep as JD’s breathing seemed very regular. I slept on the camping bed next to JD. The silence woke me up at 7. No sound of breathing. As I put my head on JD’s chest, I just caught her last few heartbeats. I got the nurses who confirmed JD was gone. Then they left me alone for a while and I cried. Relief. Pain. Anger. Sadness. Loss. Emptiness. Numbness. All of that.

They asked if I wanted to help wash JD but I felt unable to do that. I called JD’s mother, my parents and R&K came back to support me through the morning. It was all very calm & peaceful. I cried a bit more and we cleared out the room. After saying a final goodbye to JD, we went for a massive breakfast.

And so began my life as a widow.

Now what?

19th May2011

Deciding on the impossible

by Dutchcloggie

JD is in the hospice. After agonising over it for a few days, I decided I wanted to see if re-hydrating would make JD more comfortable. So she wemt to the hospice and spent yesterday on a drip. After a night of seizures, vomiting and bed wetting, I think the answer is clearly NO. Her body is strongly objecting to the fluids. By doing this, I have probably prolonged JD’s life by a few days (the fluids did make her more alert, even if also more uncomfortable) but also prolonged her suffering.

I sat down with the consultant (and a host of medical students) to discuss options. He understood how hard I found it to make decisions when everyone keeps saying that it needs to be good for both JD and for me. Since these two things are not always the same, that makes deciding almost impossible. The doctor was lovely and he asked me if I would prefer him to make the decisions in my place or would I like his opinion and decide myself? In the end, he gave his opinion on what he felt should happen and I said: then that is what we’ll do. And then I cried. Not just for JD, but because finally I made a decision with clear input and opinions,based on facts and experience, not just on emotions, hopes and wishes. This has been so lacking in the past few weeks where the responsibility was all mine. I made decisions based on gut feelings, rather than on experience or medical knowledge. This has meant I never felt sure about having done the right or wrong thing, something which has proved extremely stressful.

Decision was to stop all treatment, other than pain relief. So no fluids, no food etc. This is effectively the same as it was at home. But this time, I also decided to keep JD in the hospice. I know this is probably better for JD and me as I would most likely panic every time JD vomits or moans in the night. But I still feel like I failed her at the last minute.

So the waiting begins. Or rather, it continues. For as long as someone can live without fluids. This time, it really does feel like I can cross off the days.

Is it wrong to already be wondering which one of her friends would like to speak at the service?

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

12th Aug2009

More misery

by Dutchcloggie

So, the result of JD’s PET scan was not a happy one (Not that we expected that).

Scan shows clear area of high uptake and increased metabolic rate in the right anterior frontal lobe. On the positive side, the Oncologist thinks the surgeon might be able to take the offending Grade III bits out, something they will get back to us about. I assume that is a good thing as it means it will at least slow things down a bit.

She is still starting the chemotherapy, Temozolomide, tomorrow for 5 days. At least we can apparently go on holiday because any side effects of the drugs are only expected to last for as long as she is actually taking the tablets. So we’re off to France. Yay.

JD is much better about this than me. In fact, she went to see her PhD mentor after the hospital visit. I am feeling depressed and deflated after it all. This is not a curable illness. I think it is starting to sink in that, let’s be honest, she will die of this sometime (assuming she doesn’t walk under a bus before then). If she’s lucky, it will be 10 years, rather than 1 but that is still not good enough!

I should be strong and organised and supportive for JD but right now, I just want to leave my job, my house, my car, get all my money together and travel around for months, together, not worrying about anything. With no set time to return, no responsibilities. Just go away.

But apparently that kind of thing is only acceptable once things get ‘really bad’.

Might go home now and have some booze and a good cry.

05th Aug2009

Temozolomide

by Dutchcloggie

JD went to the Oncologist this morning to discuss the results of her first MRI since the radiotherapy. We were very hopeful because she has had no problems with the tumour at all, even though she has finished with the steroids. We thought: That means the thing has shrunk and that is surely good.

So to say we were gobsmacked when we were told the MRI showed signs of a change in tumour type is an understatement. He said there are indications that the tumour is progressing to a Grade III in certain parts. Next week, they will do a PET scan to see if this is indeed the case but either way, he wants to start Jane on a course or Temozolomide. Chemotherapy.

Hmmm….not what we were hoping for. The thing has changed from large Grade II to small Grade III, hence JD had no headaches etc.

They way he talked about it sounded all a bit casual. As if it really was only a tiny set back and that the chemo would possibly cure what the radiotherapy was not able to do.

I am very confused about this. In the past 4 years, since discovery and initial surgery, the attitude of all doctors has been: not to worry, we just want to treat it to be sure it won’t get worse. And yet, the result of each treatment has been a, small, step in the wrong direction.

Surgery: they said it was a small tumour and that they might as well take it out whilst they were there for the biopsy. They also said it might come back or it might never come back. RESULT: They were unable to remove it all, it came back and they were never able to take a proper biopsy.

Radiotherapy: they said it was nothing serious as yet but just to be safe, let’s do a course of RT. In a high dose and the aim is to cure. A small risk of changing grade. RESULT: It didn’t kill it and it looks like it changed grade but it might not have but either way she’ll get chemo, just to be sure. Oh, and he said: well, it IS a rather large tumour….something else we were never told before.

Chemotherapy: he said he has many patients who have been on many cycles of this drugs and are doing fine. The aim is to cure so that it might never come back. RESULT: ?

My point is, how are we supposed to judge how serious this is getting when the doctors keep giving us the impression there really isn’t anything to worry about yet and that they are just giving JD the treatments almost as a kind of precaution.

They are all tiny steps in the wrong direction and it makes it really hard for us to feel upset or scared or deal with the emotions because every time, we are given the impression things are really not bad yet. And so we are in some kind of emotional limbo. Almost like the progression of the tumour keeps creeping up on us. A bit like when people gain weight: it happens slowly over time and goes almost unnoticed, until it is too late and suddenly people realise they are fat. It feels like that: small things are added all the time to this story and yet, we don’t really respond to it emotionally because it is such a tiny bit of news. So I am waiting for the moment where the doctor will say: well, we have tried all we can but it is now ‘officially’ incurable. I am afraid that when that happens, we will be shocked because we did not realise that is how bad it was…

Does that make sense?

I know doctors are trying to protect you from thinking the world is going to end right away but this half-baked attitude is so confusing: if it really wasn’t such a problem, you would not give radiotherapy and chemo therapy! Just be straight with us! Over the past few months we have found out, via casual bits of info just dropped into the conversation by the Oncologist, that the tumour is actually quite large, is inoperable, has invaded the corpus callosum and thalamus. These sound like pretty serious bits of information that we were never actually told properly. And now there are signs it is changing to Grade III in parts. How the hell do we know how worried to be?

There. Rant over.

Feeling better now. Now where is that bottle of Scotch I bought.

On the practical side: it probably means our holiday to France is off in 2 weeks. Nobody will give JD travel insurance with a brain tumour and chemo therapy…:-( I am SO upset about that, you won’t believe it.

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?

14th May2009

High grade or low grade tumours?

by Dutchcloggie

Yesterday JD & I went to another brain tumour seminar in London. Informative as it was, it focused too much on high grade tumours and not enough on low-grade ones. I understand high grade tumours are more ‘sexy: they are aggressive, they kill real quick (in a few weeks sometimes) and they are mostly incurable. It is much easier to get sympathy and funding for such a terrible disease.

With a low-grade tumour, people can live for decades. In fact, they can even be cured in some lucky cases. But that does not mean they do not kill a lot of people. And just because you can live with a tumour for years does not mean it is not cancer or invasive. Low grade tumours are called low grade because they grow slower than high grade tumours. They may be dormant for years before growing at all and they might grow at such a slow rate that many people with low grade tumours are on a ‘Wait and See’ treatment plan, meaning nothing is done about the tumour until it grows too big.

But there are plenty of people with low grade tumours that have radiotherapy, chemo therapy, multiple operations to remove tumour tissue and resulting brain damage from removing healthy brain tissue and so on.

So although they may not kill as fast as high grade tumours, they are still a nasty thing to have and they can still seriously wreck your life, if anything because of the constant fear of having a time bomb in your head that might go off at any moment.

There is not a lot of research done in to low grade tumours. Treatment that works on high grade tumours does not have to work on low grade ones. They are different animals.

And so it means we just don’t know much about it at all. Not much info on life expectancy, not much info on treatment, not much info on quality of life. Not much of anything really. But a lot of pain, trauma, hospital visits, crying, hair loss, illness, anger, fear, loss of independence, loss of self esteem, loss of quality of life.

People with low grade tumours get all that. But nowhere near the (media) attention they and their loved ones deserve.

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?

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 :-)

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.

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