Bunny who?

Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

A letter

30 August 2011


3rd June 2005 (3 days before surgery)

Dear Marieke,

This is just a small letter for you just in case I don't make it or something unexpected happens. I want to put down all the things that I try to say to you and fail. Maybe when you read this letter you can hear my voice, see my face or feel me standing next to you.


[SNIP]

We were always meant to be together. We'll see each other again one day.

I'll be looking after you always.

Take care

Jane
Xxxx



30th August 2011

Dear Jane,

Three months since you died. I know I lost you much earlier than that. One of the things that hurt so much about your long, slow deterioration process was that I knew this time, there would be no letter. So I take this letter and pretend you would have written something similar had you had the chance this time. The six years since you wrote that letter were filled with love, happiness and worries. But every second of it was worth it.

I like that you say you will look after me. But I don't recall you believing in an afterlife. Were you hedging your bets? Were you just writing that to give me comfort? Or maybe in the years after your surgery, you came to the conclusion there is no God, nothing more to life, because if there was, he would not be killing a 27-year old brilliant person with a debilitating brain tumour.

If you can hedge your bets, then so can I. So if you are still looking out for me, please continue to do so. Maybe I am doing ok because you are looking out for me. Who knows. But I wish I could hear your voice, see your face or feel you standing next to me.

I love you always.

Marieke
Xxxx


Keep Reading: "A letter"

The clothes she wore

28 August 2011

Dead bodies do disgusting things. So I appreciate that the funeral home probably washed Jane's PJs before they gave them back to me. There is a slight industrial smell to the t-shirt (no, I have not tried to smell her trousers) so even the last thing she wore does not smell of her.

She died wearing her favourite t-shirt. She wore it so much that I had to ask the friend who bought it to buy two more. So for her last few weeks, Jane was dressed in a NASA t-shirt virtually every day. I like that a lot now because it means I feel I am wearing part of her when I sleep in one of the NASA shirts. The third one has gone back to her friend, as a memento.

For 3 months, the clothes Jane died in have been sitting on the nightstand, next to the bed. The t-shirt lived on a pillow in the bed for a while but since it does not smell of Jane (in fact, it smells more of morgue & disinfectant), it now lives on the nightstand again.

I really want to wear the t-shirt. Not because she died in it, but because it was her favourite shirt. But because she died in it, I want to preserve whatever is left of her on it. Eventhough I know there is nothing left. I don't want to contaminate the last thing I have that *might* just have some Jane-bits on it. All her other clothes have been washed when she was still in the hospice.

I don't think I will ever be able to wear it. But what to do with it? It can not live next to the bed forever. Actually, why not? It is comforting in a way. But also might keep the idea alive that she could come back at some point.

But I can not yet wash them. Because once I wash them, it will be yet another trace of Jane that is being ereased from my life. Pretty soon, there will be nothing left that once felt her touch. Nothing that once caught her eye. Just me. And my memories.

And a NASA t-shirt.



Keep Reading: "The clothes she wore"

Goodbye spoon

27 August 2011

The spoon has been camping with us for 3 years. I remember we bought the red plastic disposable stuff because kept losing our proper knives & forks.

We poured boiling water in a mug and the spoon melted. Remember how we were in stitches?

The spoon broke today. It was never made to last, I know. But it is yet another part of our past I am going to have to let go of.

Tears. Over a plastic spoon.

It seems every day brings a new goodbye.


Keep Reading: "Goodbye spoon"

Jane's holiday in Cornwall 2007

A few times, when we went away on holiday, we kept a holiday diary. Since I revisited Cornwall last week, I thought I would share some bits of the holiday I had with Jane. Here are some of Jane's diary entries. (For some reason the pictures are showing up in low-res. Click on the if you want to see a better version)

23 July 2007
Our new purchase is a windbreak but unfortunately the wind is choosing to come at us from many different directions. It is an improvement as we are able to cook things a little quicker now (especially on our new Camping Stove - we are able to attempt two-pot dishes - but don't tell the environmentalists).
Jane cooking in the driving rain. The next day, we bought a new, bigger tent so we could cook inside.
It is now raining. Fucking shite weather crappy holiday. So we are eating in the car. I prefer the car to the tent for eating. I'm not sure why. Perhaps the nice dining chairs and obscene number of cupholders that Landrover have thoughtfully provided?

Rain continued to come down all night. I slept OK but as the airbed is basically a mini bouncy castle, we disturbed each other every time we moved.

24 July 2007
Lovely day today. M made me bacon and egg sandwiches and we decided to trundle off to St Ives. We wandered around. Dangles our toes in the water of the harbour beach and walked up to the greeny bit at the headland and flew our kite. M enjoyed the spectators and we were both showing off a bit by doing various combinations and photographing each other.



After lunchtime, we bought icecream. We were both pleased to have accidentally picked the shop operated by grannies and we felt good that our money wasn't going to some fat middle aged man in a sports car. Maybe the grannies had Bentleys or something.

We decided to make the most of the good weather and go body boarding back at base. We were really glad we did. Both of us had a great time on our kiddie boards. I seem to have adopted the sunny one and M has taken a shine to the dolphin one. We played for a few hours in the surf.

26 July 2007
OMG! Another morning with torrential rain. This is definitely the rainiest holiday I have ever been on. We had breakfast in the car, henceforth known as The Ark. After much cajoling, M convinced me in a lull in the rain to take the tent down and have a shower. I was getting used to being rancid.

The outer tent was stuffed in a bin bag (oh how we take care of our new possessions) and we drove to Tintagel in more torrential rain. Who knew there was even that mucy rain in the world?

Disaster struck when putting up the new tent as a gust of wind caught the tent mid-erection and shattered one of the poles. Duck tape sorted it out. As I write this, huge gusts of wind are rocking the tent but, cross fingers, there have been no cracks or other ominous sounds.

I never knew M was so house, or rather 'tent proud'. We now have a door mat which was, in a formerr life, a Beauty Spots of Cornwall tea towel. I'm not sure what that means about our impressions of Cornwall or the success of our holiday thus far.


M made dinner and was then let off the leash and wet to play with the kite. After a while, I went to find her but managed to step in every cowpat on the way it seemed. We tried to help some German kids with their kite but IMO my pillowcase would have flown better but hey-ho.



27 July 2007
Weather was nice so we decided to walk the Tintagel Circular Walk. Or rather,I thought it would be nice and M agreed. The walk was allegedly 3 miles but we made it longer with a few unscheduled departures from the route. Note that doesn't mean 'lost', just an inappropriate turning. M was kind enough to donate £1 (plus Gift aid) to the church on the cliff. I don't know what came over her. We didn't actually visit the castle due to the £4.50 entrance fee that we didn't have so we settled for icecream instead and went to the gift shop.

Jane at the parish church in Tintagel

Say CHEEEEEESE
I agreed to cycle to Boscastle in the afternoon and the lady in the shop told us the ride was 'flat-ish'. We set off and eventually made it to Boscastle after lots of pit stops on my part and lots of waiting on M's.

We wandered around town, had a quick cup of tea and then set off home, up the CHUFFING GREAT HILL.  I walked up it in the end. M said I made a 'valiant effort' and that was nice, coming from Miss Tour de France. The rest of the time was spent reading and sleeping soundly.

28 July 2007
We spent a long time in the visitor's centre as I read everything there was to read about Tintagel, the castle and Arthur, King of the Britons.  M was busy oggling cycle maps with nice plastic rain covers. One day we will be on a proper cycling holiday. Scary. I'm happy with it as long as it is FLAT. like this: ------- Not like this: ^^^^^^^  A picture says a thousand words.

M took me on a surprise trip to Port Isaac where Doc Martin was filmed but we were unable to get a shot of Fern Cottage as the batteries in the camera were dead. It was chucking it down with rain and we found ourselves in a seafood restaurant/bar where we stayed for coffee and dinner. I beat M at cards although she will deny it. We had Red Something-or-other (not Red Snapper). Very nice but not amazing. And a whole £52 squids! (Did you get the seafood reference?)

There was much fog on the way back and I felt let down because there isn't a switch in The Ark to adjust headlight angle!

29 July 2007
Overall the holiday was good. Better weather would have improved things but the company was great and that held things together nicely.

JDx

Keep Reading: "Jane's holiday in Cornwall 2007"

Pain is good

My pain is my last link to her, so as much as it hurts, I wrap it around me like a blanket, like a teenaged girl cutting jagged lines on her inner thigh with a razor blade, inflicting hurt on myself because I need to feel something. I'm not ready for time to heal this wound, but I also know I'm powerless to stop it. And knowing that makes me fight harder than ever to hold on to the pain and anchor myself in this tragedy while it's still freshly tragic. 

So every so often I pull at my scabs like a dog, desperately trying to draw some fresh blood from my open wound, but even as I do it, I know the day will come when I pull off that scab and there's no blood underneath it, just he soft pink expanse of virgin skin. And when that finally happens, when time has inevitably had its way with me, then I'll know she's gone for good.

Jonathan Tropper - How to talk to a widower

This is exactly it. This is the reason why I actively seek out thns that upset me. It connects me to Jane. An hour of tears is still better than an hour of nothingness.

Keep Reading: "Pain is good"

Trip away part 3: where I meet some lovely people

25 August 2011

My surfing trip has turned in to a trip down memory lane, visiting the places we went together.

This morning, I visited Port Isaac,  the fishing village where they film the ITV show 'Doc Martin'. In 2007, when we were camping in Tintagel, I told Jane to get in the car and navigate us to Port Isaac on a very rainy day. We were bored, sitting in our tent and so at around 4pm, I decided it was time for action and we got in the car. I did not tell her where we were heading and she was genuinely delighted to be in "Portwenn".

We had a quick look around, spotted Doc Martin's cottage and had dinner in a very nice restaurant.

Today I went back and had some lunch in the same place. After 20 minutes, a nice couple asked if they could sit at my table as it was very busy and raining very hard outside. I was ok with that as I was having a whole table just for me and my book (and a beautiful bowl of Port Isaac crab Bisque) The woman said they were on a trip down memory lane and I said I was as well. She asked why so I told them about Jane. She had tears in her eyes when I said what I was doing in town and how yesterday in St Ives was so incredibly hard.

She and her husband were extremely sweet and asked all kinds of questions. Instead of the British reserve, they were genuinely interested and caring. And also, they did not just listen, they actually engaged in a conversation, sharing some of their life and sadness about certain things. Then, when I left, they told me they were sure I will be ok in the future. Because I have a positive attitude, kindness of heart and a lot of love to give, judging by the way I spoke about Jane. The kindness of strangers can sometimes make your day.

After that, I drove to Tintagel. By now, I noticed I had become slightly obsessed with making sure I visited every place Jane & I had been to. I don't want to turn that in to a habit but it seemed logical for now since I don't think I'll be in Cornwall again any time soon.

Jane
I walked around the village and made my way to Tintagel Castle. In the distance I spotted the parish church where Jane and I had sat for a few minutes, years back.it meant a long walk up the cliff. My feet were in absolute agony. I guess climbing cliff tops is not a good idea when both your Achilles tendons are sprained but hey, what's a bit of physical pain in comparison! I said out loud to myself that I should not be so lazy and just walk up the cliff.

And so I made my way to the little church, remembering every detail from 4 years ago. Amazing how things come back, picture perfect. In the church, I lit a candle for Jane. Not in a religious way. Just happened that I used a church candle. I don't believe in God and neither did Jane. But lighting a candle has to do with memories and not with religion. So I lit her candle, cried a few silent tears and left again. Dragged myself back in to town. On the way back to the car, I walked onto the campsite where we had camped. Just to see the spot where our tent had been. A family had pitched their tent in our spot. It's not our spot anymore.

Before getting in the car, a quick glance throuh the window at the table in the pub where we had a JD & Coke.

Then I got in the car and drove back to Perranporth. It was a nice day. Nowhere near as emotional as St Ives the day before.

I am still not sure why I am doing this. It most certainly wasn't the plan when I decided to go to Cornwall to go surfing. I feel another blog post coming.
Keep Reading: "Trip away part 3: where I meet some lovely people"

Trip away part 2: Tears in Cornwall

24 August 2011

After the music festival, I drove down to Cornwall to learn how to surf. It was awesome. The best 4 hours since Jane died as I was simply too busy concentrating to think about her. I surfed for 2 days and then hurt my Achills tendons and could surf no more. So instead I went on a kind of pilgrimage around the places we went to in 2007.

Maybe I should been better prepared.  Or less naive. In any case, the trip to St Ives was like having my guts ripped out with a pointy hook. Why put myself through it, you might wonder. The answer is: I don't really know.  Maybe I just wanted to try and catch a glimpse of our happy past.

The streets were full of loud tourists and screaming kids. I wondered around aimlessly. Or so I thought. Suddenly I found the spot.



I used this picture of Jane on the funeral cards and the order of service and it has become a very important image for me. Symbolising when she was still free and happy. And how, in a sense, she is now free again.

I thought I might as well face it head on so I walked up and found a quiet place to sit. No sooner had I sat down on a rock, when a sledgehammer hit me in the face. Seeing the same spot but now empty, no Jane, no kite flying, no happiness.


It started as a bit of tears but as the hour went on, it turned in to a full on crying session, complete with snot, heaving, wailing and more tears. Every time I tried to leave, tears came back. For over an hour I sat there, crying, sometimes quietly, sometimes loudly. I did not even cry like that when Jane died. Not at the funeral. Not afterwards. Never.

The longer it went on, the less able I felt to leave. I wanted to go, but every time I stood up, my heart ruptured further. It wasn't busy so I was relatively alone but the few people who walked past could not have missed my crying. Nobody spoke. I did not really want anybody to speak to me. When a dog ran up to me, I tried talking to it but all the came out was a loud sob and I was off again.

I wish I could explain to people that I really am not pathetic and suicidal and crying all the time. I have genuinely good moments. But the pain is so deep, it is like nothing else anyone can ever imagine, no matter how kindly people try.

And so a photo that did not have much meaning beyond it just being a pretty picture, has now created an attachement to a place in Cornwall that will forever be linked with Jane and the emptyness her death has left me with.

It is strange how these things go. We had fun in Cornwall but it was certainly not the holiday I have the fondest memories of. And yet, because of a simple photograph, it feels like the place closest to Jane. I feel I will be back there again.


Keep Reading: "Trip away part 2: Tears in Cornwall"

Trip away part 1: Green Man Festival in Wales

22 August 2011

The Green Man festival was great. I worked, met up with H and O who were also there. I went to bed around midnight every night. I was busy and the times I was on my own were not too bad. A few tears every day. 

Most upsetting was te moment I was relaxing in the sauna (yes, a sauna at a festival) when suddenly, fom the main stage, came the first few bars of Crowded House's "Fall at your feet". They were using it for the sound check. So the first music I heard at the festival was the song  played when I finally said goodbye to you in the crematorium.  I don't believe in dead people sending messages but it was certainly weird. And emotional. So I cried in the sauna. I guess people thought it was sweat, not tears.

I cried when I spotted a Chinese lantern in the sky. I remembered when we lit one in Scotland in February. You wrote your wish on it: Cured of tumour. I knew it was never going to happen. To me, these lanterns now represent desperation, hoping against hope, the razor-sharp pain I felt when you wished for a cure. Did you know that was impossible? Or did you still have hope? Did you know the end was near? Did you count the days? How did you feel? Were you angry? Were you scared? Or did you accept it? When did you start realising how bad it was? When did you stop knowing?

I break down every time I think of that. How, the months before your death, you knew it was not going well but were unable to talk about it. Did you know? Or were you blissfully unaware and innocently hopeful? I hope you were as the alternative is just too painful for me to contemplate.
Keep Reading: "Trip away part 1: Green Man Festival in Wales"

On solo camping

20 August 2011

I am at the Green Man Festival in Wales. In an impulsive moment, I signed up as a litter picker in exchange for a free ticket for the weekend. 5 shifts of 4 hours over 5 days is not too bad and I thought it would get me out of the house for a bit.

Over all, it is not too bad so far. I was very worried about camping on my own. I have such incredibly wonderful memories of camping with Jane in various places. Wales, France, Cornwall...

The tent I am in right now for example. I bought it in 2007 in Truro, Cornwall. We were camping in a tiny dome tent and the rain was relentless. We could not even make ourselves a cup of tea in the tent. We spent a lot of time lying in bed. One morning I woke up and the rain finally got to me. I told Jane to stay in bed whilst I jumped in the car, drove to Truro (30 minutes away), bought a tent from Millets, put it up next to our tiny tent and told Jane: we have a new home, please continue your snoozing in the big tent. A great impulse purchase and how we loved having it.

Or our trip to France in 2009. Only a few months after the end of Jane's radiotherapy. She was still rather portly, easily tired and a tad slow. It was a beautiful trip, spoilt slightly by her being sick in the car on the way to Dover, due to having started chemotherapy. The trip was the best holiday we ever had together. The weather was great, we cooked togehter, went on cycle trips, spent 2 days bodyboarding at the Cote Sauvage until we were both absolutely shattered.

After Jane's death, I just could not see myself ever camping on my own. Well, here I am. And although things are ok so far, it is every bit as I feared it would be. Not that I am crying all the time, in fact, quite the opposite. But I just can't get myself to do anything. I have to do a 4 hour shift today at 6 but I can't even be bothered to go to see the festival until then. It would just be me sitting on my own in a large field full of happy people, feeling very lonely.

Yesterday morning, during the soundcheck, they played a Crowded House track to test the sound. And although I have been singing along to "Fall at your feet" quite a few times since it was played as the final song at Jane's funeral, this time, I was completely caught out, hearing it so loud, played from a massive stage. I did not bother trying to hide my tears.

The thing that is hardest to deal with is the indifference. I am not having fun, I am not hating it. I could go home, I could stay. It would make no difference to me. I do things I enjoy and I have moments with friends when I am genuinely having fun. But as soon as I am not busy doing something, I am hit with a big feeling of indifference. Nothing really matters. I don't really care about anything.

Apart from one thing.

I really miss having Jane around to say: "I love you" to. I miss that feeling you get when you know your love makes someone happy. I miss making someone happy. It makes me feel alive.
At the moment I am not really alive. I am just living.
Keep Reading: "On solo camping"

Hello Northants Chron readers

17 August 2011

Thank you for visiting my site. It means a lot that you have taken the time to come here. Please feel free to look around. If you feel up for it, please have a read of Jane's story on this blog I kept during the 6 years of her illness: http://www.astrocytoma.co.uk. It was an emotional journey but it is important for people to know what really happens when people have a brain tumour. Because it is nothing like what they show you on TV in Waterloo Road or Coronation Street.

Jane at the Bedfordshire Championships 2007

I miss Jane beyond words. Caring for the person you love more than life itself was for me the most rewarding thing I am ever likely to do. It has made me a better person. For 9 months, I was responsible for someone's wellbeing. But towards the end, it just became too hard for one person to bear. The fear I was was not keeping Jane comfortable at home was too big. And so for the last 10 days of her life, Jane went to the Cynthia Spencer Hospice. In the Hospice, I got the chance to stop being Jane's carer and spend her last 10 days as her wife. She wasn't aware of that though because the tumour had robbed her of her personality, memory, concentration, everything that made Jane Jane. She slept but I slept with her, talked to her, sang to her and cradled her in my arms when she died.

Jane in the Hospice, hours before her death

The Cynthia Spencer Hospice is a magic place where wonderful staff help people to make their last few days in this life as comfortable as possible, both for patients and their family.

Jane died at the ridiculously young age of 27. She had great plans to make a difference in the world, getting a degree in Maths & Business and a Masters degree from the Warwick Business School. She always said she wanted to die Doctor Daniel but sadly, she did not have enough time to finish her PhD in Corporate Social Responsibility.

And this is why I am raising money. To make sure her short life leaves an impression on the world beyond those who knew and loved her. Just like it would have done had she had the chance to fulfill her potential.

I am hoping to set up a number of fundraising events in 2011-2012. Music gigs, sporting events, you name it. I hope to see you at one of these events. But you can of course donate money right now. Please go to http://www.justgiving.com/BouncyBean. Your money will make a difference.

Spending 9 months caring for Jane inspired me to go back to university and I hope to start a degree in Adult Nursing in September 2012. So I have this year to focus on the fundraising. I have set a compleely ridiculous target of £10,000. I will feel like a fool if I don't reach it.

So please help the hospice to help others.

Keep Reading: "Hello Northants Chron readers"

An accidental holiday

15 August 2011

I had told myself after Jane's death that I would not be able to go on a camping holiday on my own for a long while. We used to love it so much so it was too much for me to contemplate doing it on my own. Too many happy memories to make me sad.

However, kind of accidentally, I seem to be going on a 10 days trip on Wednesday and I am getting a bit scared.

I am going to work at The Green Man Festival in Wales for 5 days. I'll be camping but because I am working, I did not see it as camping but more as living in a tent for a while.

However, I also want to go to Cornwall to learn to surf so I reasoned it would be easiest to drive from Wales to Cornwall, do a few days surfing and then go home again. Again, I did not see the surfing thing as much of a holiday because initially I was going to stay in a hostel and it was only 3 days. But since I will have my tent in the car, it would be throwing my money away to go in a hostel. However, due to various other things, I won't be able to go surfing before college starts if I don't go next week.

So now these two non-holidays have combined to a 10 day trip away from home and it is looking suspiciously like a holiday on my own. The camping gear is lying around the house, I am packing tent and sleeping bag etc. I will be cooking my dinner and breakfast on the Camping Gaz stove we bought in France, sleep on the airmatress we last slept on at the Edinburgh Fringe lat year...

And since I have realised this, I have become really scared and upset by it. I am not sure I am ready for a 'proper holiday' on my own.

I am not afraid of the festival because I will be working And if I find it difficult on my own, I will just take on some more shifts to keep me busy.

But the surfing makes it a proper trip rather than a long weekend to Cornwall, if that makes sense. But otherwise it is a 6 hour drive from my house and that does not make sense for a few days.

So logically, it makes perfect sense. But emotionally, I have suddenly become really scared...
Keep Reading: "An accidental holiday"

An Astrocytoma: 6 years in 8 pictures

14 August 2011

So here they are: Jane's MRI scans that show how this all went down. They can no longer find the scans they did first, in 2005 so the first view of the tumour is from 2006, a year after surgery. It is difficult to compare scans exactly as they have been taken by different machines, at different times and with different contrast substances. So when something lights up really bright in the picture, that does not always mean the tumour got a lot worse.


January 2006

Diffuse Astrocytoma MRI January 2006
There is a clear grey area on the left of the front (the MRI is mirrored so the left of the picture is the right of the brain). It is clearly visible that the tumour is diffuse. There are no clearly defined edges. It is not crossing the midline of the brain.

January 2007

Diffuse Astrocytoma MRI January 2007
Although some areas light up more, it is clear the shape & size of the tumour has not changed much since the last scan. Indeed, Jane is still happily living a normal life, forgetting about the tumour, free from any symptoms.  The difference in contrast can sometimes be as simple as it being a different machine (or me not using the exact same slide).

January 2008

Diffuse Astrocytoma MRI January 2008
A year later and the tumour is still roughly the same size. At this point. the doctors were discussing a possible tiny tiny change. However, the change was so small that some said there was no change at all. It is difficult to judge from the scan how big the actual tumour is and what is swollen healthy brain tissue.

October 2008

Diffuse Astrocytoma MRI October 2008
Now things have changed. Jane had been complaining of headaches and double vision. The tumour is clearly larger than previously. It is also obvious there is a lot more swelling and the tumour is pushing against the midline, bending it out of shape. This is called mass-effect. The tumour has invaded the Corpus Calosum and this means it is now inoperable. The swelling of healthy tissue is once again difficult to separate from tumour tissue. Based on this scan, Jane has radiotherapy.

July 2009

Anaplastic Astrocytoma MRI July 2009
After the radiotherapy, the tumour has shrunk a little in size. Unfortunately, as is very clear from the 3 bright spots, the radiotherapy has caused extensive brain necrosis (death of healthy brain tissue) and the bright spots are cysts filled with fluid, where brain used to be. Further more, the centre of the image shows the tumour has crossed the midline and has taken on the appearance of a much more aggressive tumour. It is now no longer a benign tumour but an Anaplastic Astrocytoma Grade III. In short: radiotherapy has not worked and caused brain damage. No cure is possible after this. Chemotherapy is started.

January 2010

Anaplastic Astrocytoma MRI January 2010
After 6 months of chemotherapy, the tumour has shrunk somewhat. It no longer presses on the midline of the brain. There is considerably less mass-effect. The grey area is smaller, although the cysts remain. They will not go away. This is a positive result compared to the previous scan and there is hope that the chemotherapy will continue to contain the tumour.

June 2010

Anaplastic Astrocytoma MRI June 2010
Very little change in the scan. Some slight change in the grey area but I can not tell if this is just because it is a different scan or if this means something. Although Jane's symptoms are getting worse, the scan offers no proof of further progression. Just like there can be a tumour with no symptoms for a long time, it is possible to have symptoms longs before the scan shows any change.

September 2010

Anaplastic Astrocytoma September 2010
2 months later, the story is completely different. The chemotherapy is no longer working. The scan is not as clear as the previous ones but it is obvious that the tumour now stretches much further in to the brain. It has now reached the brain stem and affects both sides of the brain. There is no sure fire way to distinguish between diffuse tumour tissue and brain swelling but it is clear a larger area of the brain is now affected. Jane is admitted to the hospice and large doses of steroids help reduce the swelling. Symptoms improve for a few months.

A final scan is done in January 2011. I don't have that scan (yet) but that scan shows more necrosis and new tumours in different parts of the brain.

So that is what it looks like. A relentless march towards death. It never really got much better, no matter what we tried. Looking at these scans makes me angry, it makes me sad. But it also gives me a strange sense of acceptance. It shows in very clear images that nobody could have done anything.


Keep Reading: "An Astrocytoma: 6 years in 8 pictures"

Keeping Jane alive

12 August 2011

Grieving is supposed to be a process to help you to come to terms with the loss of a loved one. Over time, you learn to give the person you lost a new space in your life. They are still there but in a different way. Grieving is the process that helps you find that place.

10 weeks into my grieving process, I am trying to find that place for Jane. It is hard to explain how this process changes but I'll give it a try as it is important that I understand what is happening.

When someone is alive, they occupy a space in your life, in your daily routine, in your thoughts. There were rituals we used to have, thins we used to do together. In the first weeks after Jane's death, I tried to continue doing the same things, continue the rituals. I filled the empty space with thoughts of Jane, replacing her actual presence with thoughts of her.

This is not giving Jane a new place in my life. This was trying to continue things as before and simply replacing Jane with the memory of Jane. Needless to say that doesn't work and merely reinforces the loss and loneliness because a memory can never replace a person.

I worked on setting up her website, made sure her uni work was passed on to her tutor so he could look for someone to take it on. I tried to get this website and Jane's website more attention so more people would know about Jane and who she was. Somehow I was trying to keep adding new chapters to Jane and her life.

Doing this made me feel close to Jane because it meant she was still making 'new' memories with me. It was just that I was doing it for her. Like holding both ends of a conversation and pretending you are having a discussion.

Over the weeks, I have realised that the immideate chance to create these new memories is coming to an end. The website is finished, her uni work has been handed over, I have milked all our friends for money for Jane-related charity.

I can no longer fill the Jane-shaped hole with activities. It is time to move on to the next phase where I create a NEW space for Jane, rather than trying to fill the old one. I have run out of sand to fill that space.

Analogy alert.

Imagine Jane's loss is symbolised by a big, hole in the ground. Next to the hole is a pile of sand which symbolises the active part Jane can play in my daily life after her death (building her website, get involved with her uni work, actively do Jane-related things). I am shoveling the sand into the hole in an attempt to completely fill the empty space of Jane's death. I have now come to the end of the pile of sand and I have realised there is not enough sand to fill up the entire hole. I am still scraping around to find a bit more sand but pretty soon I will run out. But the hole won't be filled and as long as the hole is not filled to the top, I risk falling in to it and then it will be a long process to climb back out.

So, it is now time to look around me and find something else that I can use to fill the empty space. And when that runs out, I'll find something else again. As I get closer and closer to the to the top of the hole, I will need less and less stuff to fill it with. And hopefully, eventually, I will reach the point where the hole has been completely filled up.

Then I can stand at the edge, I can walk across the ground, I can lie on it, I can touch it.

Without the risk of falling in.
Keep Reading: "Keeping Jane alive"

I will be fine

10 August 2011

Happy birthday to me.

It is 10 weeks since you died. I miss you so, so much. I cry for you every day. I am sorry to say though that I don't cry for you ALL day, every day.

Yesterday I saw A. for my first session of grief counseling. I used to love it when you played flute with her as music therapy. But then again, I used to love watching you do virtually anything. I like that I don't have to go through the whole process of getting to know the conselor before starting the therapy.

The session was good. Hey, I got to talk about you as much as I wanted. I find it hard to describe how incredibly difficult it is to deal with you no longer being a part of my future without bursting in to tears. I'll probably have half a dozen sessions. I just need to get an idea of how to get on with my life, now you are no longer here.

I think I am actually doing ok. I go out, I see friends, I do stuff. I am living. I am not grief stricken. Stricken as in: incapacitated by grief. I miss you in everything I do but it does not stop me doing it.

Tonight I went bowling with 6 people I had never met before. Organised through a website for people who want to meet other people in Northampton for friendship & activities. The bowling was a nice enough activity but when we finished the games and sat down at the bar for a chat, I found it overwhelming and difficult. I got through it as I did not want people to think I was rude. I was the first to leave. Oh, and did I mention I even went for pizza on my own in Bella Italia before I went bowling? And I did not even feel miserable. Probably because I was reading a book at the same time. But still...

For a first time, only 10 weeks after you died, I think I did pretty damn good, actually. In fact, I think overall I am doing pretty good. You told me you wanted me to get on with life; be happy again as soon as possible. I am working on it. I just need to find a way to get on with life and yet still hold you close. But don't worry, Leafy Lief. I'll be fine. I miss you. I love you. Always.


Unwinding Janis Ian/Kyle Flemming

The hours pass, the night unwinds
You left my heart a beat behind
Time is a friend and a foe
I never dreamed you would go
Love is a clock unwinding

'round and around
'til the feelings run down
I toss and I turn
'til I'm all tired out
I know I told you not to worry,
I'll be fine
It's just a matter of the heart,
and that takes time to unwind

I saw your sister yesterday
We couldn't find a lot to say
I took an apartment downtown
I'm getting used to it now
Leaving the past behind me

'round and around
'til the feelings run down
I toss and I turn
'til I'm all tired out
I know I told you not to worry,
I'll be fine
It's just a matter of the heart,
and that takes time to unwind
Keep Reading: "I will be fine"

What the oncologist said...

08 August 2011

Today I saw an oncologist and a radiologist. They walked me through Jane's treatment and her scans. The outcome is basically that once the brain tumour came back in 2008, Jane was never going to survive it. Although they could have done diffent things, it would not have changed the outcome. She never really stood a chance.

Although that is upsetting, it also makes me feel better. I don't have to doubt her treatment. There are no regrets, there are no What Ifs. It just was the way it was.

I now also understand why we were not given the full picture. It would not have made it easier for us to know in tiny detail that everything we did after October 2008 was just trying to put off her death. Sub-conciously we knew this, but it was never spoken out loud by her treatment team ( not the same people we saw today). I still would have preferred a little more info during her treatment but I understand how knowing everything would have made our last few years together depressing instead of hopeful. We would have lost the point to life.

I have many unanswered questions still But I now realise I no longer need the answers to them because it is inconsequential. I hope to get copies of her scans at some point and then I can show you what I saw today.

One of the most revealing things was that really brain tumour treatment is only one step removed from randomly stabbing in the dark. Scans don't really show what's going on. Patients might show deterioration or improvement for which no evidence is visible on the scan. So when I told the doctors Jane was getting worse, they were not hding the truth when they said the scan was still clear. They just couldn't tell.

Time for a stiff drink...
Keep Reading: "What the oncologist said..."

A painful wedding decision

07 August 2011


Jane's best friend is getting married next week. It is a 3 hour drive from here so just dropping in for a quick congratulations is not an option. I would have to stay overnight. There would be no escape if things go wrong for me.

I have decided not to go. I don't know anyone there, other than the happy couple and the bridesmaid. I don't want to burden their day by making them feel they have to spend all their time with me. And I am not able to spend a whole weekend at a wedding, on my own, when I don't know anyone.

I really did want to go for Jane though. I was worried that if I don't go, and nobody else there who knew Jane, there will be nobody there to remember her. No mention in a speech because why would the bride or groom do that, talking about someone who is no longer there to people who have no idea who she was? So I said I would go, just so I could hear them mention Jane's name because surely they would not 'ignore' Jane if I was there.

But then I realised it is not up to me to dictate how people remember Jane, especially what they do when I am not there. It is also pretty rude to assume people won't remember Jane in their thoughts unless I remind them of her. It is judging the way they grieve. And quite frankly, I KNOW they miss Jane. I am not the only one grieving and not everybody grieves in the same way. I can not go on my own, and I don't NEED to go for Jane. She'll be there, wether her name is spoken out loud or not. So I am not going.

This has nothing to do with it being a wedding. It has nothing to do with being unable to see other people being happy. Had there been many people I knew, I would go. It is about being extremely alone, far from safety, in a crowd of happy people I don't know.

I am sad about not going as bride & groom have been friends since Jane's university days.

But I just can not do it. When I imagine myself at the wedding without Jane, I get filled with a feeling of fear and panic. My chest goes tight and I break out in a sweat. Just the idea of going makes me burst in to tears.

I don't want to think of their wedding like that. I want to picture them having a happy day. I want to see the pictures and the video. I want to picture THEIR day. Not mine.

I will celebrate their wedding by doing something I enjoy on the day. The only gift I can give them is that I will try to be happy on their wedding day. I can't be happy at their wedding. So in order for me to be happy for them, I will be happy for them somewhere else.
Keep Reading: "A painful wedding decision"

I would have loved you anyway by Trisha Yearwood

06 August 2011

If I'd've known the way that this would end
If I'd've read the last page first
If I'd've had the strength to walk away
If I'd've known how this would hurt

I would've loved you anyway
I'd do it all the same
Not a second I would change
Not a touch that I would trade
Had I known my heart would break
I'd've loved you anyway

It's bittersweet to look back now
At memories withered on a vine
Just to hold you close to me
For a moment in time

I would've loved you anyway
I'd do it all the same
Not a second I would change
Not a touch that I would trade
Had I known my heart would break
I'd've loved you anyway

Even if I'd seen it comin'
You'd still have seen me runnin'
Straight into your arms

I would've loved you anyway
I'd do it all the same
Not a second I would change
Not a touch that I would trade
Had I known my heart would break
I would've loved you anyway
I would've loved you anyway

=====

People look down on country music because it is simple, down to earth. But although the performance is often too overly sentimental for my liking, I often find the straight forwardness of the lyrics refreshing yet comforting. It is how those of us who don't think in metaphores might describe their feelings. If I had ANY songwriting talent, I would have written this.
Keep Reading: "I would have loved you anyway by Trisha Yearwood"

Wishing you were here

You always encouraged me to play and sing. I never really wanted to because others are so much better than I am.

A few months before you died we were at a pub to see some friends play at an open mike night. You asked me to sing you a few songs. I could not refuse your request and you loved it.

You were on my mind when I played today. You would have approved. I wish I played more for you. I played for you today. I hope you liked it.


Keep Reading: "Wishing you were here"

Back to hospital

04 August 2011

The hospital. You did not die there but it was the start of the very last stage of your journey. I had to go there today for a chest x-ray. It seems I have done too much exercise, trying to keep busy.

Jane waiting in A&E in April
As I cycled up to the hospital, I braced myself, knowing it might be hard. But it was worse than I thought. I cried as soon as I walked through the doors. To get to the x-ray department, I had to go through A&E. The same A&E you waited 4 hours to be seen after your seizure in April. Past A&E, past emergency CT where you had your second fit of the night. Past the Emergency Assesment Unit where you spent 3 nights. I stood in front of the double doors of EAU for a few moments, remembering. From where I stood, I could see the bed you were in. Tears were running down my face.

I tried to compose myself as I walked up to x-ray reception. As soon as I opened my mouth, my tears started again.

"I...need...a..a...chest...hexrahaaayy" I wailed at the receptionist. She looked at me with an expressionless face. She did not speak. I tried to tell her that my GP had booked the appointment for me and she must have understood because she got my name from the screen. I was worried that she might think I was so upset over a ruddy x-ray so I mumbled that I had not been back to the hospital since the death of my wife. Her face remained expressionless. Had she not heard my sad story? Or had she heard it but not really cared? I did not want to repeat myself, in case she would say: I heard you the first time.

The couple in the queue behind me looked puzzled but did not speak. I was desperate for someone to talk to me. For someone who knew you. Someone who would walk up to me, say they remembered you from when you were there and would sit with me whilst I talked about you. Someone who understood. Failing that, I just wanted someone to ask what was wrong.

Instead, I took a number of deep breaths and managed to stop my tears after about 5 minutes.

X-ray done, I cycled home, away from the hospital. In tears.

I miss you.
Keep Reading: "Back to hospital"

Winnie knows his stuff

02 August 2011

I have yet to find anyone who describes my feelings better than Winnie the Pooh.

Keep Reading: "Winnie knows his stuff"

Jane's fencing bag

01 August 2011

With her fencing kit from the last time she used it. Probably around June last year. Freshly washed, ready to be used again.

The Bag on the Back Seat
Her mother took it home for storage when we moved to the flat and had no space. I picked it up today. First, I could not get it out of the car. I left it on the back seat and went into the flat.

After an hour of only thinking of The Bag on the Back Seat, I went to the car to get it. When I opened the door, my heart just stopped. I used taking a picture as a tactic to keep my composure. Life is different when seen through a lens.

I finally got it out and put it in the wall outside. I could not bring it inside yet. My hand were trembling as I feared a complete collapse when opening the bag. I was afraid of what I would find inside. How would I respond to what was inside? Opening the bag would show me a snapshot of when things were still reasonably OK. Things packed away in the expectation to be used again at some point. A reminder of a life halted. A river stopped mid-flow.

Shoes, her breeches and other fencing clothes. The little towel she used to wipe her forehead. Her mask. The bandana she wore on her head. Her sweatband. As if I was looking at her body.

Feeling upset but composed, I rummaged through the bag. Looking for something but not sure what exactly. I zipped the bag up again and brought it inside the house. I felt quite pleased with myself for not crumbling into a heap.

I cried a river
That lasted about 4 minutes. In fact, it lasted until I sat down to relax. Tears just did not stop coming. I walked up to the bag and got all the clothes out. I sat on the floor and hugged the bag. Crying and crying and crying. For about 30 minutes. Leaving big wet patches on the bag.

I was going to give the kit to the fencing club to be used by others. But I don't think I will ever be able to do it.

Fencing was probably the only thing Jane and I never shared. I tried it just so I knew what she was doing but I don't like it. Too much like physical chess for my liking. Maybe this is why it was so extremely painful to go through the stuff. It was 100% Jane. Something I had nothing to do with. Something she absolutely loved and was hers alone.

Her mental decline was mercilessly exposed after the radiotherapy in 2009. A sport that requires logic, speed of thinking, forethought, planning and a fast reaction speed was probably the worst thing she could have chosen.

Firstly she no longer fitted in her own kit and had to use the club's borrowed stuff. That hurt. What hurt more though was watching her attempts at fencing whilst seriously impaired. She was slow to respond, could not think ahead and generally just stood there whilst other people let her win or let her hit them. That was nice of them but it was absolutely soul destroying to see. She wanted to get back to it so badly but she cut an extremely sad figure. A complete shadow of the woman who had competed in championships and won trophies only a year before.

Jane getting 3rd place in
County Championships

Things got a little better and she did return to fencing between March 2009 and June 2010 but she was never the same again.

Another stark reminder of how incredibly gut wrenching it is to see an extremely bright woman, an academic, a PhD student, a fencer, struck by a brain tumour. And not just in any place in the brain. Some people are 'lucky' and have a tumour in a location of the brain that controls body functions. So they might lose the ability to walk. Or hear. Or see. But at least they remain in control of their faculties until the end. But not Jane. She caught it in the place that made her what she was. The place that controls memory, logic, ability to process information, personality. So I never knew how she felt in the last 9 months of her life. We both knew she was dying but she was unable to discuss it; either because she could not find the words or because she could not comprehend it.
Keep Reading: "Jane's fencing bag"