Bunny who?

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

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

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

Our Favourite Adventure

30 June 2011

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
Keep Reading: "Our Favourite Adventure"

Fat cow

29 June 2011

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.
Keep Reading: "Fat cow"

Never again...

25 June 2011

... 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.
Keep Reading: "Never again..."

Holiday diary

20 June 2011

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.
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Keep Reading: "Holiday diary"

Ashes to ashes

17 June 2011

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

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!

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'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.
Keep Reading: "Ashes to ashes"

How you can help me

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 :-)
Keep Reading: "How you can help me"

What is left...

16 June 2011

What'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 aswell (apart from the rugy 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?
Keep Reading: "What is left..."

Liefie, I can't sleep

14 June 2011

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
Keep Reading: "Liefie, I can't sleep"

If there is anything I can do...

12 June 2011

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.
Keep Reading: "If there is anything I can do..."

My way of mourning

10 June 2011

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.

Today 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 smelt the tshirt, hoping to get a little bit of Jane back. But they just smelt 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 teddybear. 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....
Keep Reading: "My way of mourning"

When all is said and done...

09 June 2011

Old Leamingtonians Ladies Rugby
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


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:

"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, Crowded House ended the service with "Fall at your feet" and 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?
Keep Reading: "When all is said and done..."

I found a note...

05 June 2011

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.
Keep Reading: "I found a note..."

Goodbye

After keeping a 6 year record of Jane's brain tumour, the BouncyBean blog has come to an end. I have collected ALL 6 years' worth of posts about the brain tumour on a new website. You can find it here: http://astrocytoma.co.uk. The reason for creating a new blog is that Wordpress offers much better options for keeping posts organised. And for 6 years' worth of blogs, it needs to stay organised. The site contains ONLY posts about the brain tumour journey. I think a lot of you may not have been able to read the older blogs because they appeared on my personal website, instead of a dedicated site.

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.
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Going it alone

04 June 2011

Hello. Welcome back to my personal blog. Since BouncyBean was about JD and our/her journey with her brain tumour, I felt it was time to end that blog chapter and return to my own, personal blog to continue my own journey. All the blog posts from BouncyBean are here as well.

I have collected ALL 6 years' worth of posts about the brain tumour on a new website. You can find it here: http://www.astrocytoma.co.uk. The reason for creating a new blog is that Wordpress offers much better options for keeping posts organised. And for 6 years' worth of blogs need to stay organised. The site contains ONLY posts about the brain tumour journey. I think a lot of you may not have been able to read the older blogs because they appeared on my personal website, instead of a dedicated site.


I have organised JD's funeral mostly on my own. It has been the most stressful time for reasons I can not publicly discuss in detail, but believe me, I would like to. Suffice to say that I would rather re-live the day JD died, than have another day like I had on Wednesday, when I had to see the funeral director 3 times in one day with different dates. When I had to contact a school to try and re-organise someone's exams so the date would suit, something that surely shouldn't be my job. When due to this changing of dates, I could not get the special coffin I wanted so I had to phone the manufacturer direct and get them to tell the funeral director that they COULD deliver on time, despite me being told it was impossible. When my car battery died due to spending so much time on my mobile whilst it was charging. When the venue for the "after-party" was declared unavailable on the day of the funeral, despite having been given that date as an option, only for it it be available again an hour later. When I had to design a funeral announcement card and get it ready for the printer the next day. When someone wanted to discuss the contents of JD's will already.

Never again. I hope. The ONLY person who simply did what he promised and did it quickly, was Chris, a designer who promised he would finish the design of the card and get it ready for the printer.

But in the end, most of it is now done. Just need to make an Order of Service and write some words to say at the service. Not sure if I will speak or get someone else to say it for me.http://www.astrocytoma.co.uk
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One last look

03 June 2011

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 immideate emotions. I decided that the memories will be with me forever so if they were somehow spoilt 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.
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In the end...

02 June 2011

...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 fanstastic 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. Emptyness. 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 widdow.

Now what?
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