30th May2011

It’s done

by Dutchcloggie

Jane passed away at 7 this morning. She went in her sleep whilst I held her hand. Goodbye my angel.

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?

03rd Jun2011

One last look

by Dutchcloggie
Jane flying a kite in Cornwall

Jane flying our kite in Cornwall in July 2007

I went to see Jane yesterday. She looks peaceful but I felt uncomfortable and stayed only 30 seconds. I saw her on Monday in the hospice of course but then she was Jane who is dead. Yesterday, she seemed to be a dead body that used to be Jane. Big, big difference.

I shuffled around the table but I could not bring myself to look at her face. I wanted to but I was afraid I would be unable to see her in any other way in my memory. And so my memories of her were more important than my immediate emotions. I decided that the memories will be with me forever so if they were somehow spoiled by the need to take once last look, I would forever regret it.

So I closed the door and left her for the very last time.

05th Jun2011

Goodbye

by Dutchcloggie

After keeping a 6 year record of Jane’s brain tumour, this blog has come to an end. I will leave it up here for the future in the hope it can help others who are going through the same thing.

If you want to keep in touch with whatever else is going on in my life without Jane (starting with funeral etc), please visit my personal blog Bunnyfactor10 at http://www.bunnyfactor10.com.

When I moved to the UK in March 2004, we did not move in together until August. So in the end, Jane and I only had 4 months of worry-free living together. And then, in January 2005, our lives changed forever. I knew Jane and I would not get old together. I read all the statistics of an average 6-year survival. But 6 years feels just so far away. We married a year after Jane’s surgery. She died almost exactly 6 years after her surgery. If I could do it again, I would marry her again. Even with the brain tumour and the immense pain and emptiness I feel with her loss, I would still do it again. Because the time we had together was more beautiful than anything I ever imagined. My life has been filled with more meaning, with more love and more tenderness than I ever imagined to get in my life. I thought I loved Jane as much as I could. But when she trusted me to care for her in the last 9 months of her life, I learned about a whole new, deeper level of love. One that I can confidently say you can only reach by going through trauma together. I would have been happy with the love we had before. But it seems the price we have to pay for reaching that all-consuming, deep level of love, of dedication, of trust, of humility, the price for that is death.

05th Jun2011

I found a note

by Dutchcloggie

A note Jane scribbled

Jane's scribble

I know I said this blog would be dormant but so many people have said they think my current emotions should be part of this blog. I shall copy a few posts from my personal blog here as well as they deal with the aftermath of Jane’s death.

Going through Jane’s things, I found the little notebook we kept with her treatment diary. In this notebook, we wrote all her appointments, what the doctors said etc. That way, when the doctor would ask how long ago her last scan was for example, or what her last known symptom was, we just looked in the diary.

And in the middle of the notebook, I found this note that Jane scribbled in December 2010.
I can only guess what was happening in her head.

“Piri Piri sauce – mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm no – totally randommm. Totally random sauce thoughts. It was v. stupid to put your toenail and………….”

She wrote this, I assume, after we ate some fish from Sainsbury’s that was marinated in PiriPiri sauce. Not sure what the toenail refers to though. Perhaps I did something stupid? Or perhaps she did? Basically, is shows that Jane was really living in the present. She responded to things that were happening right there and then. If you asked her to write down what she did during the day, she would write something about what was going on around her at the moment she was writing.

It is both sweet and devastating to read it. To realise that for a long time, I had no idea what was really going on in her head. Or what made her tick. I just hope I did the right things most of the time.

09th Jun2011

When all is said and done

by Dutchcloggie
Old Leamingtonians Ladies

Old Leamingtonians Ladies

They came in rugby club colours. They came in fencing kit. They came in school colours. They came in anything but black. As the weather made up its mind about rain or shine, outside the chapel, nearly 100 people came to say goodbye to a friend who left too soon. A small hiccough when it turned out the crematorium had put bibles on all the seats. I ran inside to remove all of them before letting people in.

Northampton Fencing Club

Northampton Fencing Club

I was very happy that people were surprised by the awesomeness of JD’s coffin. I had moved heaven and earth to get that particular one. It was covered in a large image of a galaxy. In keeping with JD’s beliefs, I had also made sure the manufacturers of the coffin were as environmentally sound as they could be. In fact, they burn the wood off-cuts from making the coffins which generates enough energy to power the factory.

As they carried the coffin in to the chapel, JD’s fencing friends, who had come in full fencing whites, gave her a fencing salute. Kirsty MacColl sang “Thank you for the days”. I cried.On the top of the coffin was a short poem:

Jane was cremated in a Cosmos Coffin

"There are stars whose light only reaches the earth long after they have fallen apart. There are people whose remembrance gives light in this world, long after they have passed away. This light shines in our darkest nights on the road we must follow."

There were tributes from Uni friends, from school friends, from my sister and from JD’s mother. Along the back wall of the room stood a large semi-circle of blue and gold hoops from all the rugby girls. It looked beautiful. My sister spoke on my behalf. Looking back, I wish I had spoken myself. But I would not have known what to say, other than how much I loved her. How much I still love her. How much I will miss her guidance, her input in my decisions, her love, her smile, her kindness. How much I will be lost without her. How much I want to make her proud of me. How much I wished it was me with the tumour.

The service was too short. I wanted to spend more time with JD. I wanted it not to be happening. I wanted everyone to go away and leave me with her for a few more hours. I wanted to throw myself onto the coffin and tell her one more time how much I love her. I wanted to ask her if she could see how much her friends and family love her. I wanted this not to be real.

Instead, we went to the rugby club where JD and I spent happy years making friends. I had created a slide show with pictures of JD which was shown on the projector. I loved seeing everyone look at the pictures, pointing, laughing, remembering.

I ran around like a headless chicken, making sure I got to say hello to everyone. People had come from so far away and I wanted everyone to know how much I appreciated their efforts to say goodbye to JD. All the while, I was wondering when I would start the proper crying I was expecting.

Instead, I cried only very little. Surprisingly little. I have not cried much at all yet. Maybe because, unbeknownst to myself, I had already been saying goodbye for weeks before she died. Maybe, I keep telling myself, maybe it will come later. But how much later? Surely it does not mean I did not love her as much as I thought I did? Surely not. So why am I not crying more? I am alone. I was told by many people this would be the hardest day. But it is no harder, no more boring, no more lonely than the days that have gone before. Maybe it is still not feeling real. maybe it is because JD was already out of the house for a while before she died so it is not that much different. Maybe it is because I have not had real companionship with JD for the last 2 months of her life, so the difference is not that big? Is the amount of crying related to how much you love and miss someone?

10th Jun2011

My way of mourning

by Dutchcloggie

It is 2 days after the funeral and quite a few people have been lovely and texted/messaged me to see how I am doing. Apparently the days after the funeral are the hardest.

Jane's t-shirt and BearToday I picked up the clothes Jane wore when she died. They have been at the funeral home for more than a week now. When I got them back, I smelled the t-shirt, hoping to get a little bit of Jane back. But they just smelled of morgue. I had planned not to wash them for a while. I wanted to sleep in them. But I won’t now.

It doesn’t make me cry when I sleep with her teddy bear. It doesn’t make me cry when I wear her clothes. It just makes me feel closer to her. I feel more comfortable with something of Jane around me. It doesn’t matter that it does not smell of her.

I was expecting to be much more teary than I am. But I am OK. Maybe it is because, being alone, you don’t actually talk about Jane. And talking about someone is a lot more emotional than just thinking about someone.  I notice I am more likely to cry or get upset when I am talking to someone about Jane. And being home alone means I don’t talk. So I don’t cry.

I am no better or worse today than I was before the funeral, or just after Jane’s death. I am confused by this as I am not really feeling upset. I just feel flat and bored of being without my lover to cuddle up to, even if she didn’t notice it anymore at the end.

But maybe I am just not too much about crying. Maybe that is not ‘my kind of mourning’.

Maybe that is what my mourning is: not a feeling of acute pain, but an underlying feeling of your world being incomplete in a way that is hard to explain….

16th Jun2011

What is left

by Dutchcloggie

Jane's ashesWhat’s left in the end is a big green plastic jar with a lot of light grey ash in it. The ash is surprisingly heavy & dense. JD did always like her food but I doubt that is what makes her remains so heavy.

I picked them up yesterday afternoon from Leamington Spa. Ironically, the funeral director is only a few doors down from where we used to live. We used to walk past their shop when we walked in to town. I found that the hardest part. That we walked there every day but I never thought I would have to go inside to pick up her remains.

Don’t really know what to do with them. Her mother wants some. I want some in a lovely chain around my neck. I want to scatter some in various places that mattered to JD and me. Actually, that sounds like I know exactly what I want to do with them…

We lived in Leamington Spa for nearly 3 years. They were the happiest times. JD had surgery when we had lived together for only a few months but after the surgery, the tumour remained stable for a long time. So our time there was mainly a happy time, mostly free of worry.

Walking around town today, I felt really close to JD. Like it was her “spiritual  home”. Or better said, OUR spiritual home. We only left because I got a job elsewhere but I realised today I don’t like Northampton nearly as much as I like Leamington Spa. Maybe because I like walking around a place that has so many memories. 

So I am considering moving back. Nothing wrong with admitting I like to be close to whatever I have left of JD. The question is of course: where to apply to uni. If I live in Leam, it makes sense to go to Coventry University instead of Northampton. And what about the fact that I now have close friends in both places? The friends in Northampton are mainly my friends who also knew JD. The friends in Leam are Mostly Jane’s friends whom I got to know as well (apart from the rugby girls) So although I love them all, I do feel differently about both sets of friends.

Maybe my friends want to come and live in Leam too?

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.

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.

11th Sep2011

Sunday emptiness

by Dutchcloggie

Liefie,

I miss you so much. I just can not get my head around the fact that I will never see you again. Never hold your hand as we go outside. Never cuddle you in the morning. Never bring you croissants in bed.

I need your guidance so much in my life. The grief counselor said that I need to learn to find the person I am again, having been part of a couple for so long. But I know who I was before we met and I prefer the Me I was when I was with you. You never gave me feeling that I should know better than to say impulsive things or spend money on silly stuff. You helped me to believe I am not stupid and incapable but just not always to stop myself from doing things. You understood that what I needed was not someone that stopped me doing things but rather someone who helped me channel my weird quirks in the right direction.

You never judged and you stopped me from judging myself.

Look at me know. I am back to where I was when you found me. Can’t handle money. Can’t motivate myself. Feeling inadequate about it. Unwilling to accept responsibility. Too proud to admit I need my meds.

With you, I was an adult. Now I feel like a silly, incompetent child again.

I have so many plans for the future but I am so incredibly scared that it turns out I can’t do it without your support and encouragement.

The person I turn to when I feel lost. The person who gives me hope when I am confused. The person who gives me all the advice I could ever ask for. The person I need when I feel utterly desperate. That’s the person I need right now.

That person is you.

And you are dead.

The Me I was before we met had wild plans and hopes but gave up or lost interest at the first hurdle.

The Me I was with you only needed some encouraging words from you. A look that told me you believed in me, that I was able to do it.

I tried to remain that person after you died but I feel I am slowly regressing back to the person I was before. I don’t want to be that person. I need someone around me to keep me motivated to even get out of bed. Or to apply for that job. Or get the info about the student loan.

It is bizarre that your death has created a situation where I need you more than ever.

I miss you. I need you.

Why are you dead…

09th Oct2011

Astrocytoma: 6 years in 8 MRI scans

by Dutchcloggie

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 Callosum 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.

22nd Oct2011

Jane’s last holiday

by Dutchcloggie

Two months before Jane’s death, we went to Stockholm. The trip was exhausting for her and often she was confused by the speed of things around her. But she loved it. And I loved seeing her enjoying it.

We were supposed to go to Paris for her last ever trip. I still have the Eurostar tickets. She never made it.

And just to remind you what Jane was like when she was fit and healthy, here is a video of Jane flying kites in Cornwall in 2007.

Please please please give generously to the Cynthia Spencer Hospice. They gave Jane the chance of a peaceful death and me the chance of being with her 24/7. The link is at the top of the blog.

19th Dec2011

Christmas without Jane

by Dutchcloggie

When Jane died in May this year, Christmas seemed a century away. I was looking at surviving hour by hour, day by day. Losing my 27 year-old wife to a brain tumour after 8 years together was enough to handle. I thought that by the time Christmas came around, I would be over the worst and more than able to deal with it.

Jane in the snow

Christmas 2010. Jane in the snow.

Wrong.

Grief is not about how long it has been since I last saw Jane. How long since I last held her hand, that morning in the hospice when she took her last breath. It is about going through this new life, having to do everything on my own again. Every day brings a new ‘first’. First dinner party without Jane. First camping trip without Jane. First evening of coming home after work to an empty house.

First Christmas without Jane.

We loved Christmas. We knew last year it would be Jane’s last and having a white Christmas was so perfect. The photos of Jane in the snow are incredibly dear to me now. I want to be with Jane this Christmas and if that is not possible, I want to be with someone who was close to her. Unfortunately I have very little contact with Jane’s family so they are not an option. My folks live in The Netherlands. They want to give me comfort and warmth and share my pain. But they only knew Jane through me, from our 2 visits per year.

I have found a compromise. I am spending Christmas in the USA with Jane’s best friend who moved out there a few months after the funeral. Away from everything that reminds me of Jane, this friend has new stories to tell, photos to share, tears to cry. Yes, I will have to face it next year, but for now, escaping into memories is the best I can do.

14th Feb2012

Celebrating Jane (and raising cash for the Cynthia Spencer Hospice)

by Dutchcloggie

On May 30th, it will be a year since we lost Jane. I want to mark this milestone on June 2nd with a nice evening of live music and good company and you are invited.

I think I deserve a party for getting through this year:-) And I think you deserve a party for being there for me. Or for having been Jane’s friend in the past. Or for still fondly remembering Jane. Or for, well, whatever tenuous link you may have to me or Jane :-)

But most of all, I think Jane’s life was one to celebrate.

There will be live Acoustic music from some of the guys from Wordsworth and their friends. They will play all kinds of stuff but mainly things Jane liked: Crowded House, Foo Fighters, Manic Street Preachers. You know, stuff you remember from when you were in school. Mixed in with other solid tunes.

Corinne Lucy

There will also be music from Northampton’s own Joni Mitchell, Corinne Lucy.

Please bring friends along as I will be charging £3 to get in, in the hope to raise some more money for the Cynthia Spencer Hospice.

The easiest way to confirm your attendance will be to donate £3 to my Just Giving page (http://justgiving.com/bouncybean) for each person you are bringing along. Just pay with your card and leave a message with your donation with your name and number of guests.

Alternatively you can pay on the door of course but I really would prefer to know in advance how many people are planning to come so I can inform the pub what to expect.

Here is the Facebook event where you can confirm your attendance if you like. Please tell all your friends and invite them too!

If you can not make it, I think you should still give me £3 for the hospice, as an excuse. Just mention in the message that you are unable to attend :)

I have booked the pub for the Saturday evening but there will be other people as well as the pub was, understandably, not willing to close its doors on a Saturday night. However, people will all have to pay to come in. So, again, please bring friends as more friends=more money and more Jane-related people at the party.

If you feel you want to mark the occasion with something special, something to do, sing or say, please feel free to do so. Just let me know.

If you are coming from far away, I might be able to put you up for the night, as long as you let me know.

I can not explain how much it would mean to me to see friends who still think of Jane coming together for what will hopefully be an evening of joy and good memories.

Xx
Marieke

Venue:

The Romany
Trinity Avenue
Northampton
NN2 6JN

09th Jun2012

Well that was cool

by Dutchcloggie

Last Saturday was awesome. The gig I put on to mark the first anniversary of Jane’s death raised almost £400 for the Cynthia Spencer Hospice.

There were a lot of nice people. And there was a lot of nice music. 

Who was there I hear you ask? Well, there was Corinne Lucy:

Corinne Lucy

She played some lovely tunes of her own making and a couple of covers. If you haven’t yet, you should check out her YouTube Page which has a whole load of lovely videos.

Life of Pie

Then there was Life of Pie. Well, 2/3 of Life of Pie as their pianist was unfortunately unwell. The boys performed admirably and played a bunch of covers that got people humming along. They also played a nice version of Crowded House’s Fall at your Feet. They did not know this song was played at Jane’s funeral service so that was a nice touch.

And to finish off the night, there was the lovely King’s Gambit. They played stomping folk music. You should check them out on their website.

It was a nice evening. My parents and my sister had come over from Holland especially. Jane’s mother and sister were there too. And a whole bunch of our friends. And some friends of mine who never knew Jane but came to support me. Afterwards, the musicians all said: we doing this again next year? And you know what? I might just do that.

02nd Dec2012

29

by Dutchcloggie

Dear Jane,

You would have been 29 today. Nearly back in the same decade as me. We used to joke about it. When we started seeing each other, you were 19 and I was 27. When you turned 20, I told you I was happy that at least we were now in the same decade (at least until I turned 30) so the age difference no longer looked so big. You told me that once every 8 years, we would get to celebrate the event of you catching up with me, at least for a few years. We only got to be in the same decade once. You never made it to your thirties.

Would you be happy for me if you were able to know how things are going for me now? I would like to think you would be. You were always a generous woman. I seem to remember you once told me to grieve short and hard for you but then just get on with life and be happy again.

As life is settling down, I am thinking of you a fair bit again. Not in the sense that I am unhappy without you. I am happy with my life as it is. Girlfriend is wonderful. You would have liked her a lot. She looks after me extremely well and is the most understanding person I could ever have hoped to meet. You probably would have gotten pissed in The Racehorse together and laughed at the idiotic things I do. You would have asked her if I still interrupt people all the time. You would have laughed at Girlfriend rolling her eyes at that one.

At university, I learn more and more about bodies, health and dying. This obviously means I think about you a lot. How you were not healthy; how you died. How your body worked. How it did not work. What the medication and chemo did to you. I try not to think too much about how learning more makes me feel I should be able to apply that knowledge retrospectively to what happened to you. I did not know any better.

Did I treat you with enough respect when you could no longer make your own choices? Did you understand when I said: No more chemo? Did you want to shout: BUT I WANT MORE CHEMO, YOU ARE KILLING ME? Did you realise you were not drinking and eating? Did I understand you enough? Did I have enough patience to wait for you to form an answer in your head when asked if you wanted to die at home or in the hospice? You said hospice. Then home. Then hospice. Then home. Basically, did I listen enough when you were trying to tell me something? Out of all the things that happened, that question will forever haunt me. I know you were going to die. I think you knew it too. But did I treat you with respect. Did you feel I abandoned you and just sent you to a quick death? I know you would never have thought that I wanted you dead. But I hate the thought that you might have been angry or desperate to tell me not to give up on you.

Dammit. I was jut going to write you for your birthday. Because I never talk to you anymore. I did a lot just after you died. But I stopped feeling the need to do that.

I guess I just wish I could somehow tell you that I am happy. That I am doing fine. That somebody loves me. And that I can love somebody again with all my heart. But that none of that means I don’t think about you anymore.

Today I am working with R. She looked after you when you were still home. Seems fitting that on your birthday I am working with the people who helped me to look after you and who helped me to be sure I wanted to go to university.

I went to the Birmingham Christmas Market today with Girlfriend. I remember when we went for the last time in 2010 when we were grateful you even made it to celebrate another Christmas with you. And last year I met Rachael and your mother there. I should speak to them more.

My folks came over from Holland last week. My dad said it was wonderful for both of them to see me happy again. Because all their previous visits in the last 4 years have been when there was a reason for them to worry about you or, after your death, about me. It made them happy that this time they visited me and found me my chatty self again. That this time there was nothing sad about the visit. That they could see I am happy. And this in turn made them happy.

I wish I could let you know not to worry about me. I guess that is as good a birthday present to you as anything.

X
m

01st May2013

Nearly two years

by Dutchcloggie

May is here. The month JD died. By the end of this month, it will be two years. I have heard many times that the second year is harder than the first one. That in the second year, you are no longer numb and that the real emptiness strikes, the real loss, the realisation that whatever you had planned for the future with your partner is really not going to happen.

My second year was not like that at all. I started (and struggled) through my university course, I worked, I loved, I reminisced, I cried, I missed and I celebrated. I keep waiting for the Real Grief to knock me out with a sledgehammer. I am not saying life has been easy but in some ways I expected this to be different. Harder perhaps? maybe it feels easier because at no point in the first year did I stop myself from crying. Anywhere. If I felt tears, I cried them. No matter where I was at the time. In Tesco, on the street, in the delicatessen down the road, on the train, in my car. There has never been any bottling up of emotions.

Sleepy JD on ski trip in 2006

Maybe that is why I did not have the Second Year Hit. I have however lately noticed a general low-level sadness creeping back in about things. Where I have been listening to Matchbox 20 and Crowded House, JD’s favourite music. Not sure why or what it is supposed to make me feel. maybe it is one of those things that helps me feel that my past is still part of the present. Because nothing is the same. Girlfriend is a fair bit younger than me and likes different music than JD used to. So not much 90s music around my house. Mostly 80s (strangely enough). This is not a problem but it is….I don’t know. I am just used to having 90s music around, even if I don’t care much for it. I don’t know how to explain it. MB20 played in Manchester last month and 2 of JD’s friends went. I had wanted to go too but in reality, I only wanted to go because it would have reminded me of doing something I might have done with JD and her friends. I mean, I like MB20 enough but it would not normally be something I would pay lots of money for. I would have spent the entire time crying for JD, rather than actually listening to the music. So why did I want to go?

Maybe it is searching for something familiar around me. Because everything has changed.

Girlfriend and I have moved in together this week. That feels a bit weird. I am utterly sure about my feelings for Girlfriend and it is wonderful to live together; she makes me very happy indeed. But it feels weird to do things like that with someone who is not JD. I had to get used to that feeling. Settling down with someone who is not JD.

I wish there was a script that widows follow so I know that I am within the ‘normal range’. Is it normal to want to keep some things that belonged to JD? or photos? I mean, everyone has pictures from their past, right? Or letters from friends they keep. Or souvenirs. So why does it feel weird to want to keep those things from my time with JD? Maybe the music is important to me because, due to having moved house a few times since JD’s death, I have not go many physical things left. No ornaments in the house, no photos on the wall, no clothes. And nobody really to share memories with.

Last year I organised a fundraising gig for the hospice where JD died. This year, I have decided I am going to scatter the rest of her ashes on the day she died (some were scattered at Warwick University already).  I will scatter them in a place that was meaningful to her (and therefore to me).

At home a month before her death

One last thing… I wish that I could feel more sad when thinking of JD as she was before she was ill. Whenever I see pictures of healthy JD, I feel as if I am looking at my best friend who died, as opposed to someone I loved. I mean, I think of how sad it is that she is dead but I do not generally feel tears welling up. But when I think of JD when she was ill, I cry. Without fail. The thought of someone so young having gone through all that. Remembering how she was helpless. How that made her feel…It makes me incredibly sad, still. Physically sad. With tears and the lot. Does that mean I am over the actual loss of my wife and friend and am now just crying about the sadness of the illness process? Somehow I feel that that sadness will never diminish.

Anyway, this is yet another directionless post. Which shows that I just don’t know how this works. I guess I am just having a whole bunch of unguided thoughts about JD tumbling around my head at random moments.

Should I tell my university tutor? I struggle to concentrate at the moment and I know this is partly to blame but it feels like an excuse to use…


In her soft wind I will whisper
In her warm sun I will glisten
’till we see her once again
In a world without end

In her soft wind I will whisper
In her warm sun I will glisten
And I always will remember
In a world without end
She goes on

28th May2013

Coming up to two years

by Dutchcloggie

I have been moody for the past few weeks. Nothing in particular seems to bother me but I am just moody. And it seems that even though I can not point a direct finger at Jane, it is because it is That Week, That Month. In 2 days, it will be two years since Jane died.  And like last year, I am struck with a general moodiness. Low-level depression perhaps?

It is annoying to say the least. Because this is of course the time when I should be studying for my exams. But the past 3 weeks have been basically a waste of time with my concentration hitting a level I never knew I could sink to. And for someone with ADHD, that is saying something.

It is not that I am distracted by thoughts of Jane all the time. Just that everything seems gray at the moment. I moved in with Girlfriend last month and it is lovely, but I am constantly finding fault with the place we live in. Mostly it feels too small for us. Or rather, for me. So this irritates me. The fact that there is not a lot of day light in the flat irritates me. The fact that we have to dry the laundry in the living room irritates me. The fact that the street is messy irritates me. The fact that the sun comes up in the morning irritates me.

Two years.

Jane in her fencing gear in 2008.

Sometimes I still can not grasp the idea that Jane is really never coming back. Of course I know this, I am not delusional. But perhaps this thought has been popping up more recently because my life is kind of back on track. I am living with a lovely, lovely lady with whom I hope to stay for years to come. I am working towards my degree. I have nice friends. And when I complete official forms, I no longer know for sure if I should be ticking the box for Widow when I am completing official documents (for the record, I do tick Widow because the other option is Single which I am most certainly not and apparently the law says you are a widow until you remarry).

Basically, after years of being a carer and then being a widow, I am now Me again: a totally unremarkable person with a totally unremarkable life. And yet I have had so much happen to me that nobody knows unless I specifically bring it up. None of the people I meet in this new life will know how it felt. How I felt. Who Jane was. She is just a story to many people in my ‘new’ life.

Until recently, when I thought about Jane, I would mostly think about the time she was ill and needed my care. I thought of the sadness of her illness, the heart-breaking times when she soiled herself in public and needed her wife to clean her up, both with tears in our eyes. Or the sadness I feel about not being able to ask her what she wanted in her last few days. The jealousy at other brain tumour patients who are more or less lucid until very shortly before their death. Basically, I have been dealing with the trauma of Jane’s illness and her death.

Jane showing off her dry-land swimming skills in 2010.

I am not sure I have dealt with the loss of the Jane I married back in 2006. Not that it is a case of me missing Jane all the time with everything I do. But there is now space for missing the Jane she was, not the Jane she became. It is just that I have time to think about Jane and the things we did and that I will never hear her voice again. Or see her smile. Or laugh at her jokes. Or meet her university friends. Or berate her for procrastinating at university. Or ask her for help with my homework. I guess I am now sad about the loss of my best friend; the funny, witty, promising, sporty, deadpan, smart friend. The idea of Never Again is taking hold.

Never is a long time.

Jane with Bear asleep in the hospice.

This week, on the anniversary of her death, I will scatter Jane’s ashes. I am keeping some of them, tucked away inside Bear, the teddy that was with Jane since she first went in to hospital in 2005. Unobtrusive, Bear will sit on a shelf somewhere. And I will set the rest of Jane free in a place that meant most to her. The place she credits with making her who she was. It will be only me and a couple of friends.

And when I come back home, Girlfriend will be waiting for me. We probably won’t say much but she will hold me and I will cry. Cry for Jane, cry for my loss and cry because I am so lucky to have someone who understands that none of this in any way diminishes what she is to me: Friend, Partner… Future.

09th Aug2013

Honfleur: In your FACE!

by Dutchcloggie

When you are rebuilding your life after losing your partner, the days are filled with Firsts: First time shopping for one, first time home alone, first time in town alone, first time on holiday alone, first time you are in a place where you used to go together etc.

These first times include the first time you see pictures from things in your gloriously happy past. Holiday photos in particular were hard. Attentive readers may remember the drama of my first return to St Yves in Cornwall, when I rounded a corner and came face to face with the memory of flying kites with Jane.

In another post, I mulled over the thought that maybe every place I have been with Jane needs to be ‘put to rest’ in some way. Maybe by revisiting it or by looking at pictures of my time there with Jane.

I have often looked at pictures of our trip to France in 2009. Jane had finished her grueling radiotherapy in February and was seriously damaged by the experience. We did not know it yet but the results would show the tumour had changed from benign to malignant and the radiation had left substantial damage to the healthy parts of her brain. But we knew we needed a holiday.

So I packed up the tent and the bikes and we went to France for 2 weeks. My parents, who live in the Netherlands, had not seen Jane since the start of the radiotherapy and decided they REALLY wanted to see us. So they decided the best thing would be for them to drive down to France from Holland on a Saturday morning, meet us for lunch, stay for the night and return the next morning.

Dad, Jane, Me and Mum in Etretat, August 2009.

And so they did. They drove 300 miles and met us at the campsite at 1pm. Looking back, it was such a gesture of love. For both of us. They stayed in a B&B in Etretat in Normandy and the next morning, we drive to Honfleur for lunch before they made their way back to Holland, a 4-hour trip. Yes, my parents are AWESOME.

Jane wrote of that day in our Holiday Diary:

“Lunch was a salad with Camembert sans noix. We wandered around town, checking the menu of almost every restaurant it felt like, until we decided that lunch at a harbour-side restaurant wouldn’t be too pricey after all. And so the salad came to be. And the ice cream afterwards. Sorbet really. I was feeling very strong in the willpower department today. Must limit calories!”

What does this have to do with the point of having to revisit places to be able to ‘put them to rest’? Well, during our day in Honfleur, I did not take any pictures. So although it was part of our holiday, I had not seen images of the place since we were there in 2009. I had not yet cried over the memory of lunch at the harbour-side.  Until today.

A mutual friend of Jane & me posted on Facebook that she was in Honfleur. And she posted a few pictures of the harbour.

And it slapped me in the face.

And so, as Girlfriend was in the kitchen baking me a birthday cake, and minutes after she had given me some pre-birthday presents, I was crying my eyes out. Awkward. Painful. I felt a bit ashamed.

How does one deal with that dichotomy? Well, I simply emailed my dad and asked him if maybe they had taken any pictures of our time in Honfleur so that I could add them to my memory bank of Places I Have Put To Rest. Practical, right?

Although I am thinking that it won’t be so easy. Foreign places tend to have holiday memories of happiness. Not the day-to-day memories that you have of shopping in Tesco. You don’t get used to the image of having lunch outside on the quay in Honfleur. That will always be special.

04th Sep2013

Pastures new…

by Dutchcloggie

Dear Jane,

I can not remember the last time I addressed a blog post to you. I don’t know why I am addressing this one in particular to you either. Maybe this will become clear as my writing continues.

In the last few weeks/months, it seems things are really reaching a point of total closure. Is that bad? It is not about forgetting you. That would be silly. But it is about confirmation that the past is moving further and further away from me and less and less present in my day-to-day life. I think about you every day. You are woven in to the fabric of my personality. But I don’t miss you every day. I don’t even miss you every week, I think. I guess that means closure.

Adding to the feeling of time moving on, is the fact that Vicki has left the UK. She has gone to Abu Dhabi. Her school and apartment look fabulous. I am quite sure had you been alive still we would have visited her some day and crashing on her floor. Secondly, Munchkin has retired from MGC. As have a few other teachers who shared the classrooms with you. So it won’t be long until nobody at MGC/MSJ remembers you from when you were there. So returning there will different for me. Because no longer will it make me feel close to you. Because nobody from your past will be there. Another place where it is just memories. Another place where even the most fleeting of traces of you has gone. Actually, that thought DOES make me sad. Which is odd as I don’t really feel a need to be close to you anymore. To find a place where you are ‘still alive’. But I guess the idea that if I wanted, I couldn’t is enough to make me a bit sad.

Bear lives on the bookshelf

After scattering your ashes in May, I kept some behind and hid them in Bear’s belly. I don’t like having a little urn with ashes but I also worried that one day I might feel a sudden regret for not having kept any at all. I don’t know, not yet, but you know me, I need to plan for every eventuality.

To be perfectly honest, I put them in Bear and Girlfriend, who is a wizz with needle and thread, stitched him up again. Then I put Bear back on the shelf where he always is. So you are still here and yet nobody knows. And when I look at Bear, I don’t think: That’s Jane’s ashes there. I just think of Bear. Which is nice. A good compromise I feel.

As I expected, I don’t really have any contact with your mother anymore. I do however speak to your little sister on a regular basis. In fact, she is hopefully visiting Girlfriend and me soon for a night on the tiles. I love that girlfriend and R. get on so well. Somehow this makes me feel as if you approve of Girlfriend.

Speaking of Girlfriend, I should refer to her as Fiancee from now on. Yes, she asked me (in Paris) and I said yes.  There is a kind of touching/weird/serendipitous similarity to this. When you and I first decided to get married, we had to wait for the UK to finally introduce Civil Partnerships. This time, Girlfriend and I will have to wait until the UK finally opens marriage to same sex couples. So although we are engaged, we won’t get married until next year. There seems little point in getting a CP now when we could be Married next year.

Fig tree in Italy in 2007

Fiancee and I have just come back from holiday in Italy. We went to Harry’s house. They had unfortunately cut down the fig tree. So no more fig eating from the balcony. In another bit of proof of life moving on, I did not have a single moment of sadness being there. Usually when I return to a place we visited together, I feel sad and flooded with memories. But this time, I did not. In fact, it almost felt like I remembered nothing much from that holiday. Which is weird. I know we were there. I have the pictures. And yet, only things related to the pictures spring to my mind. You know what I mean? usually when you see pictures, you also remember other things that happened. But this time…nothing. I guess it is all part of moving on and giving the past a place? I did like it, that I could be somewhere we have been and not be upset. Given the fact that we went to so many places together, it made me feel bad for Fiancee that she had to be prepared for possible tears everywhere we went.

I bumped in to one of the nurses from the hospice in Sainsbury’s the other week. They had heard I am training to be a nurse and it had all touched them deeply. She said that they felt if anyone was suitable to be a nurse, it was me and that they were impressed and touched by the way you and I had interacted with each other and how I cared for you and for all the friends and family who visited you in your last days. She even had tears in her eyes. So of course so did I… I really hope I can work at that place at some point. But they are cutting funding…..

Which brings me to the awesome thing that my dad has asked the family not to give him money or presents for his upcoming 65th birthday. Instead he has asked for donations to the Cynthia Spencer Hospice. How awesome is that. I love my folks dearly.

That’s it, really. Next week I am starting my second year as a Student Nurse. One of the modules will focus on Palliative Care. I am expecting to find that very difficult. A bit close to the bone. But I’ll get through it. I hope.

20th Nov2014

You should write a book!

by Dutchcloggie

Many people have told me over the past 4 years that I should turn the blogs I wrote when Jane was ill and my first year as a widow in to a book. People have said it was helpful to them, informative. They said it made being widowed less of a mystery and made them feel more confident about approaching someone they knew was recently widowed. There have been emails and messages from partners of people with brain tumours, both in the comment section on this blog, as well as in emails I have received.

I find it extremely humbling that the blog is in any way helpful to people. The blog has been extremely helpful to me in many ways. Initially it was part of my normal blogging. Then when Jane became more ill it became a way to inform people without having to spend all my time on the phone or emailing people individually. When the end was near, it became a way of dealing with my fears and frustrations. Afterwards, it was my crutch; my only way at times to pour out my most painful, raw emotions right at the moment I was feeling them. More often than not I would break out in tears and run to the computer to start typing. None of the blogs I wrote then (or any of the ones I have written since) have been edited other than for spelling and typos. I have always written them in one sitting without going back to read them. Often they started about one thing and ended up being about something completely different.

I have read many books written by people who have lost someone or gone through a traumatic experience. These books always seem so well written, so planned out, so organised. The thing people tell me is so powerful about the blogs is that it is so raw, straight from the heart. But when I read them (which I never do), I can not imagine people would find them anything other than slightly tedious and confusing. After all, they are about someone they don’t know, whose life they have never interacted with. It might work as a blog but I can not see it as a book.

And yet, with so many people telling me it might help others…. I have started to think maybe I should do something with the blog. After all, in a way the book has already been written. It just needs tidying up. Which is the bit I am rubbish at. I write from the heart with no filter. I am simply not able (or willing?) to re-write parts so that they are in a better order or so that they are more concise. Is this what editors do? Where does one find one? How much editing should be done? Is there something that should be added or removed from the text? It is about 570 pages long so something will have to be sacrificed. Does it need small bits of clarifying text in between the blogs?

There might be someone out there who would benefit from knowing they are not the only one who lost patience with their partner when they were unable to swallow that medication that was so vital to keep them going; that they are not the only one who has shown up at work smelling of booze because last night someone offered to ‘babysit’ their partner so they could just go out with friends and forget all about it for a few precious hours. I’d hate to think that person would not be able to find this blog and feel better, even if for only a few minutes.

I have no delusions of grandeur about this blog. It is not the best thing ever written. But if it helps one person to feel better, isn’t that what I am becoming a nurse for? Isn’t that part of my nursing responsibility?

So, if you are a writer/editor/proof reader and you think you can work with me on this project (read: I give you the text and you make it in to a book), then get in touch. Or tell someone to get in touch with me.

By the way, I forgot another vital function of this blog. When I met the new Mrs through mutual friends 3 years ago, she had already read my blog (we live in a small town). She knew more about me than I knew about her. She said that reading the blog made her less scared of getting involved with a widow because she understood what I had gone through before getting involved with me. It made the widow thing a part of me, without making it all that I was, if that makes sense.

I quite like the idea that the raw story of loss is what has played an important part in finding happiness. Jane would have liked that a lot.