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….

12th Jun2011

How you can help me

by Dutchcloggie

Please talk about Jane, even though she is gone. It is more comforting to cry than to pretend that she never existed. I need to talk about her, and I need to do it over and over but I might be reluctant to start the conversation for fear of bothering you with my sadness.

Be patient with my agitation. Nothing feels secure in my world. Get comfortable with my crying. Sadness hits me in waves, and I never know when my tears may flow. Just sit with me in silence and hold my hand.

Don’t abandon me with the excuse that you don’t want to upset me. You can’t catch my grief. My world is painful, and when you are too afraid to call me or visit or say anything, you isolate me at a time when I most need to be cared about. If you don’t know what to say, just come over, give me a hug or touch my arm, and gently say, “I’m sorry.” You can even say, “I just don’t know what to say, but I care, and want you to know that.”

Just because I look good does not mean that I feel good. Ask me how I feel only if you really have time to find out. I am not strong. I’m just numb. When you tell me I am strong, I feel that you don’t see me. Because I can look the part doesn’t mean I feel the part, or if I laugh I am happy I remember how to make the sounds, it doesn’t mean I feel them.

I will not recover. This is not a cold or the flu. I’m not sick. I’m grieving and that’s different. My grieving may only begin 6 months after Jane’s death. Don’t think that I will be over it in a year. For I am not only grieving her death, but also the person I was when I was with her, the life that we shared, the plans we had, the places we will never get to go together, and the hopes and dreams that will never come true. My whole world has crumbled and I will never be the same.

I will not always be grieving as intensely, but I will never forget Jane and rather than recover, I want to incorporate her life and love into the rest of my life. She is a part of me and always will be, and sometimes I will remember her with joy and other times with a tear. Both are okay.

I don’t have to accept the death. Yes, I have to understand that it has happened and it is real, but there are some things in life that are just not acceptable.

When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that Jane is dead, so please don’t make it worse by telling me I’m not doing this right.

Please don’t tell me I can find someone else or that I need to start dating again. I’m not ready. And maybe I don’t want to. Maybe never will. And besides, what makes you think people are replaceable? They aren’t.

I don’t even understand what you mean when you say, “You’ve got to get on with your life.” My life is going on, I’ve been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, the joy will slowly return to my life. But I will never forget and there will always be times that I cry.

I need to know that you care about me. I need to feel your touch, your hugs. I need you just to be with me, and I need to be with you. I need to know you believe in me and in my ability to get through my grief in my own way, and in my own time.

Please don’t say, “Call me if you need anything.” I’ll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas:

(a) Bring food or a dvd over to watch together.

(b) Send me a card on special holidays, her birthday, and the anniversary of her death, and be sure to mention her name. You can’t make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day.

(c) Ask me more than once to join you at a shopping or a film or lunch or dinner. I may say no at first or even for a while, but please don’t give up on me because somewhere down the line, I may be ready, and if you’ve given up then I really will be alone.

(d) Understand how difficult it is for me to be surrounded by couples, to walk into events alone, to go home alone, to feel out of place in the same situations where I used to feel so comfortable. You can be the loneliest person in a crowded room.

Please don’t judge me now – or think that I’m behaving strangely. Remember I’m grieving. I may even be in shock. I am afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt. I’m experiencing a pain unlike any I’ve ever felt before and one that can’t be imagined by anyone who has not walked in my shoes.

Don’t worry if you think I’m getting better and then suddenly I seem to slip backward. Grief makes me behave this way at times. And please don’t tell me you know how I feel, or that it’s time for me to get on with my life. What I need now is time to grieve.

Most of all thank you for being my friend. Thank you for your patience. Thank you for caring. Thank you for helping, for understanding. Thank you for praying for me.

And remember in the days or years ahead, after your loss – when you need me as I have needed you – I will understand. And then I will come and be with you.

=======

I wish I could take credit for writing this but I found it on another blog. It is exactly how I feel though. Describes it even better than my own blog posts (if that is even possible 🙂

14th Jun2011

Liefie, I can’t sleep

by Dutchcloggie

I never thought I was the kind of person who would write to you after you died. But what else can I do when I can’t sleep without you? The first few days after you left, it did not seem so hard. Let’s be honest, we both knew it was coming. Keeping busy with your funeral helped me forget about the future.

But now, my life has become a big swiss cheese. There are gaping holes wherever I look. When I sat in the camping chair on the patio this evening, I thought of our camping trips. Who will zip our sleeping bags together now? I can not imagine ever going camping again without you. Even if I ever find someone new, it will always be a substitute because we were supposed to grow old together.

How will I ever find someone to fly kites with. Can you imagine me, at 38 meeting someone and explaining how I love being a child again and flying a kite? I can’t. You just understood.

I am sorry for all the things you never got to do. And I am sorry for all those times I did not understand what you were trying to tell me.

I bought the chair you sat in for the past 10 months. I just could not bare the thought of someone else sitting in your chair. When the man came to pick it up, I offered him money on the spot as I was in tears at the thought of another piece of you leaving me.

Everything I touch in the house is divided into 2 eras. The one before you went to the hospice and the one after. When I emptied the paper recycling, I looked for papers I put in that bin before you went away. I held those papers, as if they could somehow take me back to the day they were published. When you were still here. In the fridge and freezer, I looked at things I bought recently, before you went away. Somehow it is a way of holding on to you. There are still things in my life that I bought when you were still here. And as long as there are still perishable things from before you died, it means it is still very recent and I can still just pretend you have only just gone away. Or that you might come back. Even when I know I am just pretending, it makes me feel better for a second. But like a drug, it makes me feel worse right after. But that is a price worth paying for the few seconds that I pretend this never happened.

I miss you more each day. I love you more each day. I cry more each day.

Marieke

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.

18th Jun2011

If there’s anything I can do…

by Dutchcloggie

So many lovely people have offered their help and time to me. All I need to do is ask.

All I need to do?

In your daily life, how many times do you actually ask someone for help? Not very often. And in times like this, you’ll ask even less. Because you don’t want to be a burden. Because you don’t want to make people sad. Because you think you really should be able to do these simple things yourself.

If I need to ‘just ask’ for help, it means I have to tell people I need help multiple times in a week. Think for a minute how uncomfortable that would make you feel if you had to do that. Admit that you need help with simple, daily tasks. Not once, but multiple times per week, to many different people. Would you do it? Probably not.

The only people you would feel comfortable with, to do such a thing is your closest friends. So if you ask for help at all, it will be the same small group of close friends. Because they are the only ones who you feel able to show how hard things are at the moment. How even caring about the washing up is a big job. How just doing your shopping is an emotional nightmare. You just don’t share that with people you have not seen in a long time. And so you then start worrying about relying on those few close friends too much. So you stop asking. And people start thinking you are doing better. Even when you are not. In fact, things are only getting harder.

But you don’t think you can ask that friend who lives an hour/ 2 hours driving away if he/she could please come over to help with your shopping. Because that might be a burden for them.

This is not to say I am ungrateful. Until now, I too would have said: “If there is ANYTHING I can do to help, just let me know.”

But now I know that is not helpful at all. Because I won’t ask. And you will wait for my call. And when that call does not come, you will think I am doing fine. Or that I don’t need your help or friendship.

Don’t wait to be asked. Be proactive and think: what can I do to help. And then call me. Or email me with a concrete offer of help.

Going to the shop. I don’t care about eating at the moment so I don’t buy anything decent to eat. So maybe you can offer to come to my house, make a shopping list with me and go shopping together. But be prepared for tears as shopping for a new lifestyle as a widow is gut-wrenchingly painful
Cooking dinner. See above. Maybe you can offer to join me for dinner where we cook together.
Cleaning my house. I have not cleaned it properly for the past 10 months, having been otherwise engaged. So pick up the phone and let me know which dates you are free to come and help me.
Going for a drink/lunch/coffee/tea/movie/game of bowling. Just pick up the phone and see if I want to come along. But please make sure I am not the gooseberry in a group filled with couples. In a few months’ time, I will be ok as the only single person, but right now, it just hurts too much.
Going for drinks/dinner/tea/bowling/movie with friends? Why not all come my way instead of asking me to come to you?
Offer to help me get sorted on the course I need to do in Maths & English
Offer to help me with my university application process. Just come to my house, sit down with me and go through the paperwork & application. I might even make you a cup of tea.
Do you go to the gym regularly? Maybe I can come with you. You could tell me a date & time and come and pick me up.
Talk about Jane. It is OK to cry. Both for you and for me. Spending time alone means I don’t talk about Jane much. And that hurts. I want to talk about the things she used to do. I want to cry over her. I want you not to mind if I do. I want you not to feel awkward. I don’t need hugging all the time when I cry. It is perfectly OK for me to be in my chair crying and for you to be on the sofa. Tears will just be part of the conversation.

But most importantly: if you offer and I say no, don’t think you don’t need to offer again. Don’t think “Well, I asked, she said no, so I won’t ask again.” Because sometimes, just like ‘normal’ people, I might just feel like curling up in a ball on the sofa and shut the world out.

Asking for help is the hardest thing to do. And to suggest someone should ask for help at the hardest time in their lives is asking the impossible. It should be the other way around.

If there is anything you want to help me with, just let me know.

20th Jun2011

Holiday diary

by Dutchcloggie

Liefie,

Today I drove to Holland. It was a long and very difficult drive. I got a ticket for the Eurotunnel as I could not face going on the ferry. We used to go on the ferry. When we drove to Holland last year. When we went camping in Brittany in 2009. Or The Ardennes in 2007.

The drive down the M20 was hard. I remember how ill you were with chemo last year when we drove. How we had to stop on the hard shoulder because you were throwing up. How you had to wear your pjs on the ferry so I could wash your clothes in the sink during the crossing.

But I also remember how fabulous our holidays were. How you laughed and sang with me in the car, trying to remember the harmonies. I sang alone today, forcing myself through the tears. There was no harmony.

I followed the satnav and arrived without trouble. I preferred your crappy map reading and getting lost.

I have put up the tent next to my parents’ caravan. The caravan we camped in last year. The tent we bought in Cornwall.

How I would give anything to have you with me now. Why do some people live for 10-12 years with a tumour when you only got 6. I miss you more each day. I don’t like life without you much. What’s the point? I am sure I will find joy in the days again. Some day. Some long time from now.

I love you.

Published with Blogger-droid v1.6.8

25th Jun2011

Never again…

by Dutchcloggie

… you calling me “liefie”

… calling my lover “Liefie” without thinking that is really your word

… Crowded House in the car

… 2 croissants and a soft boiled egg on a Sunday

… baking bread and eating cheese and F1 Sundays

Never again…

… flying kites on the beach

… the Doc Martin box set

… fencing on Thursday

… “How was Uni today?”

Never again…

… staying in bed all day watching TV

… camping and bitching about the rain and cold nights

… to Holland

… “You look beautiful today”

… on a snow trip

Suddenly I have to learn to like doing the things we did together on my own. But I never watched F1 before we met. I never went on snow trips. I never went camping. I never flew a kite, because you taught me on that trip to Vlieland. I never sang harmonies in the car with my wife.

So not only have I lost you, I also lost so many of the things I learned to love. I loved them because I did them with you.

Even if I ever do any of that again, I will never be able to enjoy them as much as I did with you. Because I will always think of you when I do them. And then I will remember why I am not doing them with you anymore.

26th Jun2011

Fat cow

by Dutchcloggie

Today is the day Jane started dying, last month. This morning, I walked in to the gym at exactly the time her breathing changed on Sunday morning and when I called the nurse. I sat in the changing room and cried a little bit. Then a woman walked in and gave me a strange look. I wanted so much to tell her why I was crying so that someone would understand. But I thought: the poor woman is a complete stranger and it is a bit harsh to inflict this upon her. So I turned my face away so as to not ‘force’ her to say something. During the gym session, I recalled every minute of our last day together. It already seems ages ago. Much much longer than just 30 days. The last 24 hours of Jane’s life went by so fast and yet today, time seems to drag on.

Strangely enough, today has been the most productive day since Jane died. Not sure if it is related or escapism or what.

Got to the gym at 9.30, worked for about an hour. Then I had a cup of tea with H. When I got back to the flat, I wrote up a To Do list and did most of the things on it! I completed the Learn Direct Skills Checkers (A maths test and an English test) that told me I do not need to do a maths or English course and that I should just book the test right away. Which I then did. Sorted out some probate stuff and completed some more forms.

But I still managed to avoid making a shopping list and going to he supermarket. Maybe for now, I should have my shopping delivered so I can avoid the depressing place that is the supermarket.

When Jane was ill, we were home almost all the time. Due to her steroids, she was constantly hungry. Since I knew she was going to die, I felt unable to refuse her the food she asked for.

And she asked for a lot of food. I did try to keep things somewhat limited but I failed most of the time. Mostly because I found it hard to motivate myself to cook. So I got fat and Jane got fatter. So perhaps the fact Jane was so large when she died was my fault, rather than just the steroids. Sorry Jane.

In any case, I was of course not immune to all this fat and food and in 9 months, I have gone from a size 38 to a size 44. From 65 to 78 kilos. A whopping 12s4!!

All the sites about widows say that most people lose weight during their period of mourning. REALLY? I am seeing none of that. In fact, I am getting fatter and fatter.

So I signed up for the gym. Did I mention I hate he gym? I hate the gym. It is a pointless waste of time. Actually, not pointless. But soulless. And sweaty.

However, I will get through this and get back into the clothes I used to wear. The stuff Jane loved to see me wear.

One downside though: As Jane gained weight over the past 2 years, our wardrobes were no longer interchangeable. If I lose all this weight, I won’t be able to wear the XL t-shirts Jane wore in her last few months anymore… maybe I’ll stay fat.

30th Jun2011

Our favourite adventure

by Dutchcloggie

I wanted to play this at Jane’s funeral but in the end, I put the lyrics in the Order of Service. It really is the most beautiful love song; cheerful, funny and full of optimism. We went to see K’s Choice in London last year. They were wonderful and Jane absolutely loved it.

There you are
Your beauty consoles me
I’ve gone far
And I almost didn’t find you
And I almost lived without you
There is nothing in this world
I’d rather do
Than live in you

Here we go,
Our favorite adventure
You should know
I was never more complete
And I never thought I’d see
The meaning of my life
Wrapped in you
Next to me

If you ever fear
Someday we might lose this
Come back here
To this moment that will last
And time can go so fast
When everything’s exactly
Where it’s at
Its very best

K’s Choice – Favorite Adventure

02nd Jul2011

Am I dong too well?

by Dutchcloggie

I know everyone is different. I know there was a long period before Jane died where I have probably already mourned without really noticing. I know I might still be in the numb/denial stage.

But still.

It is a month since Jane’s death and I am doing fine. I am lonely and life is boring but it does not seem much worse than when I was single, before I met Jane. I have my memories of Jane all around me and I miss her. I like looking at pictures of us but I struggle to feel anything when looking at pictures from before she got ill. I remember the days but I don’t remember the emotions that went with those days.

I feel SAD but not upset.

And this confuses me. This makes me upset. This makes me cry. Even as I am typing this, I am crying. I WANT to be more upset. I WANT to feel a need to cry. Jane was wonderful and deserves it that someone is completely gutted and devastated by the hole she left behind.

Instead, I feel guilty about not feeling too badly. As if I am moving on already and that is somehow wrong. Surely she meant more to me than just a month of mourning? I am not worried that OTHER people judge me on the depth of my sadness. No, this is me judging me.

Because if I don’t feel like a total wreck without her, does that mean that perhaps I did not love her as much as I thoght I did? Surely if I loved her that much, I would be totally distraught and unable to think about anything but Jane all day?

I am in floods of tears now from writing this. Why? Why am I not in floods of tears about Jane very often? I have little crying spurts that last a minute or so. But when I think about how upset I am about not being upset enough, it reduces me to tears.

Everyone tells me that the blogs I wrote during Jane’s illness and the blogs I write now show how much I loved Jane. They say that the way I cared for Jane shows how much I loved Jane. Really? I just did what I assume anyone would do for their wife. And then I just wrote it down. I did not think about why I did t. I just did. Because I thought that it was the right thing to do. How can I take that as proof of how much I loved her?

I KNOW I loved her an awful lot. But how can I be so heartless now that she is dead and feel ok so quickly? Doesn’t that make me a heartless person? Doesn’t that just show a kind of “out of sight, out of mind”? Am I really that shallow? Am I upset now because I have just realised I am a shallow person, that I am disappointed in myself?

Or are the tears that are rolling down my cheeks at the moment actually tears of love, for the loss of Jane, but in a different disguise?

Perhaps I need some councelling to sort this out.

02nd Jul2011

Salmony Goodness: The Movie

by Dutchcloggie

When we were in Scotland in February, Jane described her meal as Salmony Goodness. I was lucky to catch it on video.

It is still hard to believe she was dead only a few months later.

This remark made me laugh so much that after the funeral, I designed a t-shirt and put it on. It is a favourite t-shirt of mine now. Jane was a funny girl.

03rd Jul2011

A trip to Scotland

by Dutchcloggie

In February, Jane & I went to Scotland for Jane’s last ski trip. It was the one thing she said she still wanted to do. I am still profoundly touched every time I see the video and pictures of the trip.

So on a lost Sunday afternoon like today, I spent my time wisely and made this video. So that everyone can see what a wonderful time we had.

04th Jul2011

Without you (Zonder jou)

by Dutchcloggie

BunnyFactor10 · Post
Without You
Posting as BunnyFactor10

Without you

The world is strangely empty without you
There is hardly anything in it
The sky keeps being so annoyingly blue
Why? What’s the point of that?

The blackbird sings quietly in the field
Really, it should stop trying so hard
The world used to be full of happiness. But now:

Empty, without you

The original poem in Dutch is much better. It is hard to translate because the poet, Annie M.G. Schmidt, plays with language so well.

Zonder jou

De wereld is wonderlijk leeg zonder jou
Er staat maar zo weinig meer in
De hemel is aldoor zo hinderlijk blauw
Waarom? Wat heeft het voor zin?

De merel zit zachtjes te zingen in ‘t groen
Voor mij hoeft ie heus zo z’n best niet te doen
De wereld kon vol van geluk zijn, maar nou:
leeg, zonder jou.

04th Jul2011

Today I wept

by Dutchcloggie

Angel,

I finally broke down and wept uncontrollably today. 

I went through more of your stuff. Our stuff. My stuff. What was yours is now mine. I don’t want it. I want you.

Going through the pile of paperwork on the desk, I decided to clear up old stuff. So I spent the day shredding old bank statements from years ago. Yours, mine, ours. All gone.

The receipts for the purchases we made from the joint account. The bed, the fridge, the computer, the matress… Symbols of a future we built but no longer have. I kept them. I am not yet ready to throw our future away. It’s too much part of the past and present still.

I got the new chequebook for what used to be our joint account. I would prefer  to still use the cheques with your name on them. Just feels less final. 

I am sorry but I threw away the mountain of printed articles that your PhD generated. I know you have all the stuff on your USB drive so nothing is lost. 

Finally, I came to the boxes of clothing. I have no plans to throw your clothes away but I opened the box and the pain just exploded around my entire body. I wept. I wailed. I screamed. I sank to my knees and buried my head in the box. I snotted all over your Neill Finn shirt. About 45 minutes, until my face was in pain.

I thought I was doing well. I am functioning well. I cry a little every day. I feel lonely every day. I miss you every day. But until today, I had not yet felt the darkness of your death. The immense hole in my life, in my heart, in my future. The desperate guilt about what you had to go through. That guilt is a whole different story that I am not ready to deal with yet.

Silly me for thinking I did not have to go through all stages of grief. That I might somehow skip bits. That I was somehow better at this grieving thing than all the other people I talk to.

I was wrong. I cried myself to sleep last night. Indoubt tonight will be different.

It has begun in earnest and I must face it head on.

I miss you so, so much. I would cut off my arms to have you back. Throw my legs in for good measure. For just another minute with you.

I love you.

“No one ever told me grief felt so like fear” – C.S. Lewis

05th Jul2011

More than a person

by Dutchcloggie

When your partner dies, you mourn the loss of your buddy, your lover, your life coach and the person who loved and trusted you more than anyone. The first few days and weeks, you miss the person. It is lonely and quiet.

After a while, the bigger picture becomes clear. It is not just the person you lost. It is your life. It is the way you do things, the way you talk, the things you used to do.

Every couple develops their own language over time. Forged through shared experiences and memories, expressions only the two of you understand become common in your relationship.
When your partner dies, this language dies too. You try to keep it alive by explaining bits to other people but it will always feel forced, unnatural. If you ever meet a new partner, you will try to use some of the expressions, because it reminds you of who you lost and it gives a comforting feeling that not everything has changed completely. As if through that, you can recapture part of what you had.

It won’t work.

And so it is yet another thing you have lost.

Jane & I had a tradition on F1 Sundays. We would bake some bread and spend the afternoon watching tv and eating bread and French cheese. It is something we just started doing and turned into a tradition. I mourn the loss of that too.

Together, Jane & I discovered we love to fly kites. I can still fly them with friends but the effortless understanding of looking out the window on a windy day and packing the kite, that will never return.

You can not simply try to carry all those things over in to a new relationship (if you are lucky enough to find someone) because that will feel forced and it clearly shows you are not ready to form new traditions with your new person, trying instead to turn your new relationship into a copy of the one you lost.

So the first few weeks, the mourning and pain are very acute. I mourn the person I lost. As time goes on, a new pain will appear. The life I lost.

Maybe this is why so many people say that after about 6 months, things suddenly get worse again.

07th Jul2011

Stunned

by Dutchcloggie

During Jane’s treatment, we asked the doctors to be honest with us and tell us the ugly truth if needed. Quite separate from asking for prognosis etc. we just wanted to be told what was happening. Surely this is not too much to ask for. I can understand doctors would be reluctant to discuss prognosis as there as so many variables. But when discussing the results of an MRI scan, surely telling the patient the exact result of that scan is normal part of the proceedings.

Apparently not.

I have an appointment coming up with Jane’s oncologist in Northampton who will show me her scans and take the time to explain what has actually happened to Jane. That is really kind of her and I was hoping for some closure on the matter. To speed things up, I asked for copies of all letters Coventry & Warwickshire University Hospital sent to Jane’s GP in the past 3 years.

Reading those letters took my breath away. How could what we came away with from the appointments be so totally different than the cold hard facts and scan results? Every time we went, I took notes and typed those notes up as soon as we came home. I thought we had a pretty good idea of what was going on.

I was wrong. First and foremost, we never really had an idea of the size of the tumour. I still have no idea. We imagined it was in the right frontal lobe but no idea how big it was. Doctor never mentioned this at all. When Jane had her surgery in 2005, they were unable to take enough tissue for a biopsy so from that, we assumed that must have been because the tumour was still relatively small. No mention of spreading, size, being inoperable etc.

Then the tumour was stable until January 2008 so we still assumed the tumour was small. Agreed, this was not explicitly discussed but I think this was a fair assessment.

January 2008: MRI shows minimal increase in size. Nothing to worry about says neurosurgeon and a scan is planned for 12 months later.

October 2008: Emergency MRI shows further growth and potentially second area of concern. A PET scan is done and the neurosurgeon gives us the result in a letter as follows: I have received the PET scan and I am happy to report this was benign and there is no increase in size. That is the entire content of the letter.

November 2008: Jane is still referred to the Oncologist. He feels that based on the results of the PET scan, it is time for a course of radiotherapy. Tumour is inoperable due to location as it has infiltrated the Corpus Callosum and the Thalmus. Size is not discussed but how did it go from minimal change in January 2008, via ‘no increase in size’ in October to having invaded other parts of the brain? This suggest the tumour had already invaded these parts of the brain when they did surgery in 2005. But we were not told this then.

In the letter to the GP, the oncologist speaks of a diagnosis of a Malignant neoplasm. Malignant? He did not tell us that back then. The letter states that the tumour, albeit extensive, was still metabolically of low grade character. Huh? Is it malignant or low grade? And how did it suddenly become extensive?

August 2009: After the radiotherapy in 2009, the first MRI my notes say: Oncologist sees changes in scan that might indicate change to higher grade in parts. Wants to do PET scan to confirm but start chemo either way. The PET scan later confirms PARTS of the tumour are indeed changed to a Grade III. It might be possible to surgically remove the malignant parts. To be discussed with Neurosurgeon.

His letter to the GP however states: Tumour has undergone further enlargement compared with examination of October 2008. More extensive invasion of the basal ganglia and considerably more in the right frontal lobe with extensive necrosis and cyst formation. Intense contrast uptake now takes place in this area. It is clear the tumour has transformed from what was formally a low grade lesion to one with a more aggressive looking appearance. Surgical intervention thought to be appropriate. To be admitted to neuro-surgical unit in the next few weeks in order to repeat frontal craniotomy. Patient is happy about this and wishes to proceed with surgery.

Now in my mind, that is considerably more serious than what he told us during the consultation. Further more, there is a mention of extensive necrosis (dead brain tissue due to the radiotherapy) This will become a crucial thing as Jane complained long and hard of serious side effects of radiotherapy months and months later. When asked, in 2010, if this could be to any possible necrosis we were told that was unlikely. So even when WE brought up the possibility of necrosis, this was denied by the Oncologist/Clinical Nurse Specialist even though the scan report clearly stated there was necrosis.

October 2009: Chemo checkup with Clinical Nurse Specialist. He says he has still not heard from the Neuro surgeon about possible operation. Jane says she would prefer to see if chemotherapy is effective before having surgery. However, if Neuro surgeon thinks surgery is appropriate, then surgery should go ahead. Remember, we don’t have the scans, nor the expertise to decide on this. The letter to the GP from the Clinical Nurse Specialist says: Arrangements will be made for Jane to be seen by the neurosurgeons in the near future regarding any further neurosurgical intervention. It must however be emphasised that, in view of her current good health, Jane would like to complete 6 cycles of Temozolomide. be re-scanned and then discuss any further neurosurgical intervention. I have put her name back on the list for discussion at the next neuro-oncology MDM.

After this, surgery was never discussed again. She never saw a neurosurgeon again and during checkups, we were almost actively dissuaded from surgery. It was mentioned that surgeons are always eager to go in and chop stuff out, even when the benefits are minimal. Remember, we had not seen a neurosurgeon to discuss this with.

January 2010: Another MRI scan. My notes about the results say: Results of MRI are positive. No sign of malignancy and tumour area looks to have shrunk, even the benign parts. Chemo to be continued for another 6 months. The Oncologist’s letter says: In comparison to the previous MRI from July 2009, there was a degree of signal change and mass effect is now considerably less than was the case at that time. Clearly Jane is delighted with the results.

No mention anymore of possible neurosurgery.

Between January and June 2010, Jane continues to complain about worsening cognitive problems. Memory, lethargy, extreme somnolence etc. This is all put down to late side-effects from the radiotherapy. No mention of the necrosis observed in the scans. Jane is told to learn to live with it.

June 2010: My notes say: MRI scan is clear (i.e. no change from last scan). I noticed recurring problems with concentration and lethargy but told this is likely to be from radiotherapy. Another scan is to be done in 6 months. The Oncologist’s letter to the GP however states something slightly different. The current imaging suggests increased signal change which is spread across the Corpus Callosum into the left hemisphere. There is however nothing to suggest increased contrast enhancement on the current study.

To me, this means the IS a change, however small it might be. To me, it seems something is brewing.

September 2010: I pressed for an emergency MRI because Jane had suddenly become incontinent.We were told things had taken a turn for the worse and from then on, you know the story. The oncologist’s letter talks of gross cognitive deterioration. And he was not wrong. The MRI scan results say: Further progression in the extensive infiltrating tumour and its associated mass effect. It continues to cross the midline and is now seen to extend inferiorly into the midbrain and posterior Fossa. Also progression in the amount of enhancement with some modules of enhancement in the right frontal lobe and Corpus Callosum. There is thickening enhancement of the hypothalamus and pituitary stalk.

So…..

In conclusion… my main gripe with all this is that from the start, the tumour was MUCH bigger than we thought and in the entire 6 years, nobody showed us the size of the tumour. Had we know the size, we would have had a much better idea of what was happening. In our case, we felt the tumour was smaller than it really was and so we were surprised when things turned bad. For us it was very sudden but for the oncologist, who knew the size, it made perfect sense.

Further more, if they had explained better which parts of the brain became affected as the tumour progressed, we would have understood better what was happening with Jane. In another post, I will explain how Jane’s cognitive deterioration makes perfect sense if you read the oncologist’s letters to the GP. Shame he did not bother telling us which bits of the brain were involved and how this would affect Jane.

Sorry for this very long post. I am surprised you are still reading, to be honest. This is clearly part of my grieving process, trying to find out what actually happened and then be angry at someone.

10th Jul2011

Testing myself

by Dutchcloggie

Jane & I used to get cheese & crackers and watch the F1 races on Sunday. As we all know here, enjoyment of food isone of the first things to go.

I thought I would try and eat cheese & crackers again today as Jane’s death surely has not changed my taste buds? I knew this was going to be a bad idea when in the cheese shop Jane & I used to visit, I barely held it together and ran away crying as soon as I had paid.

And yet I sat down today, cheeseboard & crackers ready, F1 on tv. And as soon as I picked up the knife I just wailed. How lonely I felt sitting there. How pathetic I felt for even trying. I can not possibly enjoy this anymore without Jane. I knew this and yet I tried.

The other day, a friend of mine said that it seemed as if I was testing myself. Going to the supermarket when I could order online. Cheese & crackers when I knowit will be hard. Going out to the pub when I know I will miss Jane. Spending time with friends, even if they are couples. Next week I have booked a maths exam for a Level 2 nummeracy course and after that an English exam. She said I did not need to do that testing because it has only been 6 weeks.

But I feel: i will have to do it some day so I might as well do it right away. Like they do when you have a car accident and they say you should get behind the wheel as soon as possible.

Maybe I am hoping for the short shock therapy: make it as hard as possible as soon as I can and get through the grieving asap.

How do you guys feel about that?

One thing is sure: only 3 weeks ago I thought I was doing ok. But you were all right and I was wrong. I WAS numb. And now I’m not numb anymore. And it is just getting harder.

I need my friends more than ever. I need that phone to ring because I can not do this on my own.

10th Jul2011

Sponsor me in Jane’s memory, please!

by Dutchcloggie

I am RUNNING to raise money for Cancer Research. When? Well, THIS WEEKEND! I must be mad but there you have it.

Jane absolutely HATED running and swore she would never do any fundraising that involved running. So I’m doing it instead. I hate running too and will most likely crawl my way to the finish. I am probably entering this because I am grieving and not of sound mind.
All the more reason for you to sponsor me. I have set a VERY modest target and will probably end up sponsoring myself just so the counter does not say £0.
So please please please, give me 50p (or more) of your money and make me happy. At least for a day.
Thank you. Go to the Race for Life page I set up for BouncyBean and pay with your credit card, wherever in the world you are.

UPDATE

The Race for Life is over and done with. Thanks to all who gave money. After areful consideration, I have decided to focus all my future fundraising on the Cynthia Spencer Hospice. The hospice cared for Jane (and for me) in her final days. The staff, from the coffee ladies to the doctors and nurses, were amazing and made Jane’s last few days much better. They also gave me peace of mind because I knew Jane was not in pain.

Please visit my fundraising page at http://justgiving.com/Bouncybean to make a donation. Alternatively, text BEAN83 £5 to 70070 to donate £5 or however much you wish to donate. (mobile donations are up to £10)

14th Jul2011

A good start

by Dutchcloggie

It does not happen often in our lives that we get the chance to completely stop what we are doing and re-assess our future. When it was clear Jane was not going to be with me for much longer, I started thinking about the rest of my life. Jane would be pissed off if I spent it in a job that I did not love, regretting what could have been. So even before Jane died, I knew what I was going to do: I was going to try and become a nurse. I have always wanted to be a nurse. I even applied to uni after school but did not go through with it because I was scared of the maths & sciene.

I checked the requirements and was told I need to get a Level 2 maths & English qualification.

Today I spoke to the university admission tutor for adult nursing and she told me I am a perfect candidate but I would also need a GCSE (high school qualification) in biology.
Today I did the English exam and passed with only 1 error. Next week I do the maths exam. Unfortunately the biology course will take a year, one night per week.

I want to make Jane proud of me. I want to try and do what she always said I should do. This is my chance to do what I dreamt of. To study. That is what Jane would want. I don’t want to go back to my normal life and regret it later.

I am so bad at maths and science. I am scared I will fail. But I will try my hardest. If I fail, at least I will have tried.

So today was phase one: the English exam. It was laughable, so easy. So I passed with only 1 mistake in 40 questions. I asked if I cold re-sit the exam as that one mistake really annoyed me. Next week there is the scary maths exam. And then I have a year to get a biology GCSE. In the mean time I am hoping do work as a carer to get back to working again. But today was a good start of the next phase of my life.

It will be a long, difficult road. But I am ready for it. If I fail, so be it. But there are no excuses anymore. No reasons not to try.

I just regret Jane won’t get to see me do it. But she’ll be with me all the way.

I miss you, liefie.

19th Jul2011

As time goes by

by Dutchcloggie

One of the hardest things I am struggling with is how things of my ‘former life’ slowly vanish. It is such a cold reminder that life goes on without Jane.

It starts with food in the fridge that I bought when she was alive. As long as there is some of that left, it means my life was happy not too long ago. But after a couple of weeks, there is nothing left. Happy these days is simply defined by Jane being alive or dead. Because compared to how I feel now, even in Jane’s final days, I was happy.

Other food shopping that I did when she was still alive, when she was in the house. Last night I drank the last bottle of beer from a box I bought when I was in the hospice with my best friends, waiting for Jane to die over a 24 hour period. Another reminder, gone.

The first time I washed our sheets after she died.

This morning I had to say goodbye to a pair of shoes we bought for me on holiday last year. Another bit of our history gone.

All those things, everything has a significance. Everything reminds me of when Jane was still here.

The hairgel I bought 3 months ago is now finished.

Slowly my house fills up with things Jane has nothing to do with, that she never knew about. And it hurts.

I find myself spending hours reading my own blogs about her. Just so I can remember. It kills me that the website about Jane has had no new entries since June 17, when I scattered her ashes. Because there is nothing new to add about Jane.

I log in to her Facebook account but of course nobody leaves her messages anymore. Just me.

It annoys me that it is not just people who move on but the whole bloody world. Even inanimate objects.

And I know this is the way things work. And I know that keeping something just because Jane was alive when we bought it makes no difference. And in fact, I am not attached to the actual things themselves (I don’t hug a mouldy piece of cheese). But the constant reminder that time goes on.

Already it feels like so long ago that she was with me. And it is not even 2 months.

23rd Jul2011

Six feet under and a life lost

by Dutchcloggie

I was watching 6 Feet Under last night and at the very end, when all of the characters die, they show the dates for Claire Fisher: 1983-2085. I exploded in to tears. Jane was from 1983 and to see how many years she will miss out on, starkly written in black & white, lead to a 40-minute sobbing session…

Some people have wondered how I could watch that show when it is all about death but I have found it quite calming to see death treated with a sense of realism.

However, seeing the dates of the fictional Claire Fisher’s life, suggesting she would live to be 102 really upset met. And I mean really upset me. I burst in to tears, wailed, fought with my pillow, bit my lip and nearly chocked on my tears. The idea that Jane could have lived for another 75 years is just incomprehensible, mind blowing and heart wrenching.

After the first few weeks of shock and numbness, the crying started. And as time goes by, Jane’s death Causes a new set of emotions. The focus shifts from the actual death & dying to what that actually means in terms of what we now will not share.

It means her PhD research will be lost. I will not get to swell with pride when she becomes Dr. daniel. It means we will not grow old together. It means her hair will never turn grey. It means that when I turn the big scary 40, she will not be there to tell me it’s ok. I will not get to laugh at her when she turns 40 herself. There will be no more snow trips. We won’t get to buy our first house together and spend days running around Dykea for flatpack furniture. Basically, the rest of our lives is not going to happen now.

It means nobody will ever love me again when I was young.

More and more I find myself saying: I just can not believe it. Am I regressing? I shall get myself in to bereavement counseling.

PS: If you liked 6 Feet Under, you might enjoy the 6 Feet Under convention which is being held in Bournemouth in August this year. Coffin displays and speakers such as embalmers and funeral directors… Seems to me they are a bit late to the party since the show ended in 2005.

24th Jul2011

A day in mourning

by Dutchcloggie

8:00

Wake up, realise you are not next to me. Lie in bed, thinking of the mornings we had together.

You are no longer here and we never will again wake up together. The t-shirt you wore the day you died is folded up on the pillow next to me. Should I wash it? Wear it? Throw it away? I can’t seem to do any of those options. So it remains where it is.

8:30

Make myself breakfast. Remember how you loved Dorset Cereal with yoghurt which also became my favourite way to start the day. Make tea, open the cupboard and see your mug. Make myself a solitary cup of tea. No need for your mug necause you are dead.

9:00

Back in bed. Nothing to do today as you no longer need my care. I watch tv, remembering the hours we spent watching Homes under the Hammer, Saints & Scrougers and Cash in the Attic. All through those shows, I think of when I watched it with you in my arms. Now it’s just me. Because you are dead.

12:00

When I finally drag myself out of bed, in to the shower, I see your toothbrush is no longer there. I miss you. In the shower, I see the shampoo you always used. Can’t wash myself with the Dove showercream because it is what I used to wash you in the last few weeks and the smell brings back too many painful memories. So the bottle just sits there as I can’t throw it away either.

Getting dressed, I see your clothes that I kept. We used to joke as lesbians of similar size, our wardrobes conveniently doubled when we moved in together. Most of your clothes are in boxes but it seems like a waste to throw away perfectly useable clothes so I wear the same t-shirts I wore before you died. Some of them are mine, some of them are yours. None of your clothes smell of you anymore and believe me, I have inhaled the smell to try and smell you.

13:00

Off to the gym. I remember how you hated the gym. I hate it too but I gained so much weight when I cared for you, I need to do something about it. In the gym, I listen to the audio book of Harry Potter. I remember how you used to listen to that the first time you were in the hospice and when you came home again. Walking past the swimming pool, I have a flashback to when we went swimming a few time together in November 2010. I had to help you to get changed and strap the catheter bag to your leg.

Coming home from the gym, the flat is silent. Of course it is. You are dead. I live alone now.

15:00

Off to shop for food. I dread doing this. All I see is food you used to like. Food we used to enjoy together. I don’t like cooking but almost all ready meals are for 2. At the till, I have a flashback from when we went there last. I went to get a microwave and told you to wait for me. When I got back to the till, you had wondered off because you were confused about being alone. With tears in my eyes, I run out of the shop. Home. Alone. You are dead. Never again will I find you.

17:30

Bored with watching tv, I start thinking about dinner. I am not hungry. I remember the food you liked to eat. In the freezer are still your favourite burgers. You will never eat those. Because you are dead.

I am not hungry. Cooking for one is no fun. And we will never again cook together. Because you are dead and I need to cook only for one person.

22:00

After a night of watching tv, I turn off all the lights. The silence is deafening, the darkness falls like a black cloud. The bedroom is silent. As I walk in, I quickly turn on the light and the tv because the silence is devastating. I see the t-shirt you wore when you died. And Bear, which has been with us for the entire 6 years of your illness.

As I brush my teeth, I notice your toothbrush is no longer there. Again. That’s right. You are dead.

I am afraid to turn off the light as I am scared of the tears that will follow if I allow myself to lie awake. So I watch tv until 2am, by which time I am so tired I can turn the lights off quickly and fall asleep almost instantly.

It doesn’t always work. Some nights I cry for hours. I cuddle Bear. And some nights, I secretly hug the pillow with the t-shirt you wore when you died.

These are just the moments of a random day where I do not DELIBERATELY think about you. Because I know I should not make my life harder than it needs to be. No, these are just some of the moments when it is thrown in my face. Which is virtually all the time, everywhere.

8:00

I wake up and realise you are not next to me. I am alone. Because you are dead.

27th Jul2011

Learn to fly: Nice song for a funeral

by Dutchcloggie

Whilst going through Jane’s stuff, I found a pile of compilation CDs she put together years ago. They have rather imaginative titles: “Jane’s 80s shite”, “Marieke’s crap music”, “Happy car cd” and “Jane’s driving music”. However, the best one is surely one I found this week, entitled “Jane’s horny little cd”.

Horny as in sexual? Or horny as in really good?

Let’s listen to some of it.

Janis Ian’s “Ride me like a wave”

Beautiful South’s “Don’t marry her, fuck me”

Nine Inch Nails’ “I want to fuck you like an animal”

Hmmm…. I think I get the point. Mind you, the rest is a lot less explicit with stuff from Crowded House and The Cowboy Junkies. Songs that contain not a hint of hornyness. My guess is she started out putting together a cd with naughty songs she liked but then found there weren’t that many so other stuff she just really liked made up the rest of the album. And it is really good, actually.

However, I made an interesting discovery. On ALL bar one of the CDs I found, the tracklist included “Learn to fly” by tye Foo Fighters. So I am guessing that when she put those CDs together, that was her favourite song. It sits a little uncomfortably with acoustic stuff like Janis Ian, Cowboy Junkies and Crowded House but that was Jane’s eclectic music taste.

Anyway, I wish I had found those CDs before the funeral. Then I would have played it at the end of the funeral service. Because it was clearly a favourite. And frankly, the look on people’s faces would have been worth it.

27th Jul2011

A sad reminder

by Dutchcloggie

Just found this video, shot on the morning of Jane’s last MRI scan in January. We hoped the result was positive. We expected the result to be positive. She was doing so well…

Instead, the result was a devastating blow: more tumours in new locations and no hope at all to stop it. The oncologist optimistically gave us a year or so when she must have known that was not realistic. Even so, I am glad she did not say: a few months.

27th Jul2011

Hable con ella

by Dutchcloggie

Needless European blog title really. Just that there is a film called Hable con Ella which means Talk to Her. Which is what I have taken to doing every night.

I don’t know why. I don’t believe in an afterlife. Dead is dead and Jane is dead. I don’t have a feeling that she is still with me in some way. Quite the opposite: I feel she has left me in every way possible. No vague signs for me. No whispering of my name when I am alone. No strange sounds. No imprint of her body on the bed. Dead. Gone. That’s what I believe.

(On a side note: If this is a wrong belief, then it is clear Jane loves me a lot. If she IS around me, she knows I would be completely freaked out by her proving there IS an afterlife. So she keeps quiet. There we go. I have just created a situation where Jane NOT manifesting herself is just as much proof of afterlife as Jane appearing to me. Sweet.)

So why do I talk to Jane? It is only for 2 minutes usually, whilst looking at her picture. And I usually cry. Maybe it is something I feel like doing specifically because I know I will cry? Crying is not nice, but it is better than feeling numb. I reckon I should cry a little every day. So I talk to a picture for a few minutes. Then I cry. Then I tell the picture I miss her.

And finally I feel rather stupid.

But if I don’t do it then some days will go by without talking about Jane. And that is something I am just not ready for. So if there is nobody here to talk to about Jane, I’ll do it myself.

Weirdo.

29th Jul2011

Two months since you died

by Dutchcloggie

I hate typing that sentence in a letter to you. I don’t have a problem writing it in my own blogs, but saying it to you is somehow much more painful. As if you are one of those undead people who don’t know they are dead. I’d hate to upset you by being the one to tell you the bad news 😉

The day you died is really 24 hours of dying. You gave me a warning at 9.30 in the morning, went away from us at 10.30pm and finally, you died at 7 the next day. Not sure why I am telling you how you died. You were there, after all.

Last month, I found the 30th, the day you died, much easier than the 29th. I guess that’s because all day long on the 29th, I remember what I was doing on the 29th of May. Crawling in to your bed, sitting there with the nurse, your mother visiting, K & R staying with me… I remember every second.

The first month without you was actually much easier than I anticipated. Yes, I cried but I did not feel completely useless. But now, it is harder. I cry less but it seems my life is covered with a grey veil. And this is much more painful than having sharp ups and downs. Because no matter what I do, I am constantly depressed, even when I am doing fun things.

I am really trying. I was never good at living on my own. I tend to get lonely and a bit depressed on my own. You rescued me from that. And now, I try to fill my days with going to the gym, running & cycling. It is not getting me thin any time soon but it keeps me busy.

Until I get home again. Alone. Nobody to talk to.

Hmmm…. This post is not going the way I want to.

So, on a positive note, let’s see what I have done since you died.
– Ran the Race for Life with Kate
– Passed my Level 2 Numeracy (Yes thanks, I am proud of me too)
– Passed my Level 2 Literacy
– Been out a few times with friends and managed to have a good time. Not had much fun going on my own though
– Booked myself to go to some University open days
– Made appointment for grief counseling
– Applied to college for Biology GCSE
– Visited my family in Holland
– Joined the gym and I go at least 4 times a week
– Bought a new bike and actually cycled on it
– Taken up running on days I don’t go to the gym
– Had my cholesterol tested (It’s fine, thanks for asking)
– Made appointment with Oncologist to learn exactly what happened in your brain
– Registered to go the Green Man Festival as a litter picker in exchange for a free ticket
– Thinking of taking surfing lessons before college starts
– Sent off for a job application pack for home care assistant

All in all, not bad I say. I am VERY apprehensive about the Green Man Festival and the surfing as I fear it will make me feel extremely lonely in a big crowd. I might still decide not to go.

Needless to say, I would give it all back if I could just have you back for just a minute.

Sleep tight my angel. I will think of you tomorrow. More than I already do every day. Look out for the Chinese lantern with your name on that will go up in to the sky tomorrow evening. And then, on Saturday morning, 7am, exactly 2 months after you were finally set free, I will sip my cup of tea and salute you.

I love you.

M

30th Jul2011

A sad tally

by Dutchcloggie

Today is 2 months since Jane died. I have referred to that in a number of posts on my blog and on Facebook. So it’s not like nobody knew.

Number of phonecalls to let me know people were thinking of Jane or me: 1 (from my parents)
Number of emails to let me know people were thinking of Jane or me: 0
Number of text messages to let me know people were thinking of Jane or me: 0
Number of Facebook comments to let me know people were thinking of Jane or me: 1
Number of blog comments to let me know people were thinking of Jane or me: 0

Nuff said…

I’m out of here. Good night.

01st Aug2011

Jane’s fencing bag

by Dutchcloggie

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

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.

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.

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.

04th Aug2011

Back to the hospital

by Dutchcloggie

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.

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 Assessment 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.

06th Aug2011

I sang for you

by Dutchcloggie

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.

06th Aug2011

I would have loved you anyway – Trisha Yearwood

by Dutchcloggie

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.

07th Aug2011

A painful wedding decision

by Dutchcloggie

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.

08th Aug2011

What the doctor said

by Dutchcloggie

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 different 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…

10th Aug2011

I will be fine

by Dutchcloggie

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

12th Aug2011

Keeping Jane alive

by Dutchcloggie

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.

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.

15th Aug2011

An accidental holiday

by Dutchcloggie

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 last 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…

17th Aug2011

Hello Northants Chron readers

by Dutchcloggie

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 completely 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.

20th Aug2011

On solo camping

by Dutchcloggie

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.

22nd Aug2011

Trip away part 1: Green Man Festival in Wales

by Dutchcloggie

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.

24th Aug2011

Trip away part 2: Tears in Cornwall

by Dutchcloggie

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.

Jane flying a kite in Cornwall

Jane flying hour kite

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 attachment to a place in Cornwall that will forever be linked with Jane and the emptiness 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.

25th Aug2011

Trip away part 3: Where I meet some lovely people

by Dutchcloggie

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.

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 through 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.

27th Aug2011

Pain is good

by Dutchcloggie

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.

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