27th Aug2011

Jane’s holiday in Cornwall 2007

by Dutchcloggie

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

23 July 2007
Our new purchase is a windbreak but unfortunately the wind is choosing to come at us from many different directions. It is an improvement as we are able to cook things a little quicker now (especially on our new Camping Stove – we are able to attempt two-pot dishes – but don’t tell the environmentalists).

It is now raining. Fucking shite weather crappy holiday. So we are eating in the car. I prefer the car to the tent for eating. I’m not sure why. Perhaps the nice dining chairs and obscene number of cupholders that Landrover have thoughtfully provided?

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

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

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

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

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

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

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

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

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

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

Jane at the parish church in Tintagel
Say CHEEEEEESE

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

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

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

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

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

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

JDx

27th Aug2011

Goodbye spoon

by Dutchcloggie

The plastic spoon has been camping with us for 3 years. I remember we bought the red plastic disposable stuff because kept losing our proper knives & forks.
We poured boiling water in a mug and the spoon melted. Remember how we were in stitches?
The spoon broke today. It was never made to last, I know. But it is yet another part of our past I am going to have to let go of.
Tears. Over a plastic spoon.
It seems every day brings a new goodbye.

28th Aug2011

The clothes she wore

by Dutchcloggie

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

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

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

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

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

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

And a NASA t-shirt.

30th Aug2011

A letter from Jane

by Dutchcloggie

3rd June 2005 (3 days before surgery)

Dear Marieke,

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

[SNIP]

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

I’ll be looking after you always.

Take care

Jane
Xxxx

30th August 2011

Dear Jane,

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

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

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

I love you always.

Marieke

Xxxx

01st Sep2011

I’m done with Phase 1. Time to move on.

by Dutchcloggie

I have decided I am done with Mourning – Phase One.

Three months after Jane’s death, I am ready to move on to Phase Two. Things that are still part of Phase Two:

  • Unexpected crying
  • Feeling excruciatingly lonely, especially in the evenings
  • Feeling like my heart has been ripped out
  • Missing Jane
  • Getting upset when thinking of all the things Jane never got to do
  • Talk about Jane all the time and managing to sneak a reference to Jane in to just about every conversation
  • Crying when thinking of all the pain and anguish Jane had to suffer in her life, living with death hanging over her for 6 years

Basically nothing much changes. Apart from one thing.

From today on, I am done with wastinng my time doing nothing. For 3 months I have given myself permission to do very little in regards to the future. Yes, I have enrolled on my GCSE course and done some holiday things etc. But there is more to do.

So Phase Two includes a return to normal life. In the next few weeks that means:

  • Completing my UCAS application
  • Completing my job application form to be a home carer
  • Looking around for jobs in case I don’t get to be a home carer
  • Buying the books I need for my course
  • Making lists of questins for the University open days
  • Research funding for university in 2012
  • Making more effort to cook myself decent meals at least twice a week
  • Make a bigger effort to show interest in other people’s lives
  • Keep more on top of the whole probate situation
  • Organise a benefit gig to raise money for the Cynthia Spencer Hospice

Actually, it seems to me that Phase Two might be harder than Phase One! It includes everything I did in Phase One and simply adds more responsibilities but with less sleep.

Once again it is clear that grieving is not a linear process. I’ll still need lots of help and support from all my lovely friends and family. BTW, I know I am not the only one mourning Jane so please don’t feel like you can not talk to me about her because you feel my pain is worse than yours. It’s different but not less valid. In fact, it is nice to know she is missed by others too. I am planning a birthday gathering on Jane’s birthday, December 2nd, so if you want to come and celebrate Jane’s life, put it in your diary now.

03rd Sep2011

Finn Brothers Everyone is here t-shirt

by Dutchcloggie

Long shot but worth a try so please ask anyone you might know.

As all Jane’s friends knew, she was a massive fan of Neil Finn, and as a result a fan of all the stuff he did in all his other incarnations. At her cremation, her final farewell was to the sounds of “Fall at your feet”.

Jane’s favourite t-shirt ever, as far as I know, was a green shirt she bought at a concert of The Finn Brothers in Wolverhampton, back in 2004. She wore the shirt all the time. And then last year, it was left somewhere in a hotel, together with some other things. No idea where it went, no idea where it might have been left. But it is gone. Jane was so forgetful already back then that she did not even remember to take her favourite shirt. Can’t buy it anymore either. Well, not in a Medium size which means I can wear it.


So, does anyone know of anyone who might have the same shirt and is willing to give/sell it to me? Pretty please?After Jane’s death, I went through her clothes and noticed the t-shirt was missing. I had made a list of clothes I wanted to keep and this one was high on that list. I looked and looked, asked friends, cried, cried some more, found sweet love notes she wrote to me. But no t-shirt.

UPDATE: I LOVE Finn Fans! Although not in a size Medium, a lovely person sent me the t-shirt from the USA! I can not express how much it means to me. Both to have the shirt, and the fact that people are so kind to a complete stranger. I shall make sure I gain enough weight to fit into the Large shirt. Thank you!

04th Sep2011

What’s wrong with tears?

by Dutchcloggie

I am a member of a number of messageboards for widows and widowers. A recurring theme is about showing sorrow in public. Widows writing how they have to hide their grief for the outside world and pretend they are doing fine. They smile when someone asks how they are and hide when they feel tears.

I really struggle to understand why they do this. And even more so, why is it that other widows frequently congratulate each other on being able to hide their true feelings from the world. “Today my boss asked me how I was. I forced a smile and said I was ok. I put on my happy face because I did not him to see me cry. To the outside world, it looks like I am coping well. If only they knew how my evenings are spent crying alone on the sofa.” “Oh, that must have been hard for you. Well done on keeping the tears back though.”

Why not tell him you are struggling? What is wrong with showing tears? We want understanding and sympathy from friends and colleagues but how can they know how to respond unless we give them something to work with?

Maybe it is because I am not English so my upper lip is not very stiff but I just don’t see why so many people are trying to put on a happy face in public.

This only serves to make people think you are doing well when in fact you are not and could do with help. How can they expect people to offer help when they show them a face that says they are doing well?

I often shed tears in public. Several times a day, for a few seconds, tears roll down my face. On the days that I don’t allow this, I find I usually need to have a big whailing cry later on. And they make me much more sad and exhausted than little ones throughoit the day.

And I don’t care where I am when it happens. If people whom I don’t know ask me where my wife is, I will tell them she died recently and if that brings tears to my eyes, so be it. I don’t see why I should lie and just say: “oh she is not here tonight”.

Last night I was at a gig in Swansea and I got talking to a lady at the bar. I was wearing my Salmony Goodness jumper and she asked where I bought it. I told her I made it myself and she said it was funny and did it mean anything special.

So I told her it was what Jane once said, shortly before she died and how it made me laugh because it was sweet when she said it. I said it in a kind but rather matter-of-fact kind of way. As I tend to do. And the lady smiled and opened a conversation about Jane. Exactly what I wanted. I did not cry but had tears in my eyes but that did not matter. The conversation continued and there was nothing uncomfortable about it, for me nor for her.

I am not saying everyone is wrong and I am right but I really don’t understand the problem with crying in public. I also realise that there are moments when it simply is not ‘appropriate’. For example, last week I was at a rehearsal for Invocal. They played a song Jane used to love. In addition, they played that song for her in the hospice. I burst in to tears when they started and I left the room. Not because I wanted to hide the tears but because they were never going to be able to rehearse the song with me wailing in the room. And it was not about me. I was watching their performance.

When Invocal played that same song again during the gig on Saturday, I sat in the back of the room and during the song, silent tears fell. No loud crying, nothing intrusive. Just silent tears. Had I hidden my tears on the Sunday before, I would have had a much stronger reaction during the gig. But managing tears is not the same as hiding and pretending you are fine.

But other than situations where tears might need to be managed, what is wrong with the truth and with tears? The more you do it, the less of it you will need to do. It will also make it easier for people around you to see when you are really doing ok or when you are in need of some extra help and/or friendship. If you never cry in public and always say you are ok, the moment you have a day when you can pretend no more, people will be completely shocked and they will not have a response for you. And you yourself will be shocked by your own outburst, making it embarassing for you and compounding the difficulty of the situation.

And finally, hiding your emotions makes it harder for people who are also grieving for the loss of your partner, be it as a friend, colleague or family member, to talk with you about it. And isn’t that what most of us want? To talk about this wonderful person who gave us happiness?

06th Sep2011

New tattoo

by Dutchcloggie

I got myself a nice new tattoo today. It is Jane’s signature and a horse. She used to doodle this horse on lots of things. I thought it would be nicer than one of those In Loving Memory ones.

They mixed a pinch of her ashes into the ink as well so now she will always be with me.

 

08th Sep2011

Moving house or: Do you need a lodger?

by Dutchcloggie

After a day of hard thinking, I have decided I need to move house. I have been looking for work but it is fair to say there is nothing much out there for someone who has not worked for a year and needs more than the minimum wage.

I have spent a lot of money when Jane was alive because I did not want to refuse her anything that she might want and I probably have spent too much since her death. My excuse is that I was grieving and deserved the holiday, nice food and time with friends. I am really crap with money (ADHD-related) and have very poor impulse control (ADHD related). Jane always helped me to control this. But now, with no Jane and no medication, I have failed quite dramatically at budgetting and living within my means (although what is ‘within your means’ when you have no income, just outgoings?)

So it is time to get back to work because I am going through my savings at quite a speed. Savings I will need when I am a student again next year.

If I was to find a nice room to rent, I could more than half my costs. Yes there would be virtually no space for me but on the other hand, I would have people around me which I would enjoy. It would be a massive step back but if I am going to be a student, I will have to accept this anyway. And once my costs are reduced, I can simply take a job that pays the bills.

Having looked around online, I have noticed quite a few nice shared houses for professionals that I am interested in.

This is all brought on by the fact that I am about to sign a new 6 month contract for my current flat and if I can not afford this, I shouldn’t sign for 6 months but go on a monthly rolling contract instead. Then I can look for a room without the pressure of being on the street soon.

I wish I could talk this over with someone (read: Jane). Why does this only come to me in the evening when I can’t call people.

The thing that concerns me most is the fact that all those rooms are furnished. Where will I be able to store virtually the entire contents of my house for months? For free? Once I am a student again, I shall hopefully have a student loan to help me pay the bills.

I am seeing Jane’s mother tomorrow. She has a large yard with storage. Maybe she can help?

Anyone have any suggestions? Or a room to let?

09th Sep2011

If I didn’t have you – Tim Minchin

by Dutchcloggie

I miss Jane. She was my soul mate. What a cliche. Luckily enough for me, I don’t believe there is only one soul mate for every person. Let’s be honest, with 6 billion peole in the world, what are the statistical chances of your soul mate living in the same city. Or going to the same university. Or work at the same company.

Nobody will ever make me feel like Jane did. Because there is nobody like Jane. But that is not to say nobody will make me happy in the future by being who THEY are. It will be different.

To explain my point in more detail, here is Tim Minchin with his ode to mathematics (and love), If I didn’t have you.

10th Sep2011

An unexpected note

by Dutchcloggie

Today I gave a pile of books away. Lesbian trashy stuff that the hospice charity shop would probably not sell.

As I piled them in to a bag for my friend, I thought I might keep a few back to read again. They are rubbish little romance books so I figured they might help me go to sleep. So I kept a random few of them back to read again, eventhough I had not looked at them for years.

This evening I picked one up to read before going to sleep. A story of a young woman who meets an older woman who has lost her partner to cancer and against the odds, they fall in love, blah blah blah. Mills & Boon for lesbians.

After about 20 minutes I turned the page and found this hidden in the book. A picture and a note from Jane: “I love you. Missing you lots. Jane Xxxx” Clearly left there for me when were were apart for a night due to work or University.

It had been sitting there for at least 5 years and I nearly gave the book away. A book about someone who finds love after loss. Some would say it is a sign. I say it is coincidence. Either way, my heart gave a little (actually quite a big one) lurch when I turned the page and suddenly saw her face.

I love you. Missing you lots. Marieke Xxxx

11th Sep2011

Sunday emptiness

by Dutchcloggie

Liefie,

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

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

You never judged and you stopped me from judging myself.

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

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

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

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

That person is you.

And you are dead.

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

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

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

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

I miss you. I need you.

Why are you dead…

11th Sep2011

Sunday emptiness

by Dutchcloggie

Liefie,

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

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

You never judged and you stopped me from judging myself.

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

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

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

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

That person is you.

And you are dead.

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

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

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

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

I miss you. I need you.

Why are you dead…

14th Sep2011

by Dutchcloggie

I am aware of the fact that regular readers of this blog may think I am depressed most of the time and crying lots. That is not the case. Yes I cry frequently and when I feel down, the blog is where I go. Either to write so I can sort through my emotions, or because I want to write a letter to Jane.

It seems that the only thing that makes me cry is a direct memory of something we did together. I don’t seem to be in a permanent state of sadness but when something reminds me directly of something we did together, I am prone to crying unexpectedly. Don’t get me wrong, I am ALWAYS thinking about Jane. Every single second of the day, she’s on my mind. She is in everything I do. But that does not mean I am always sad or crying when her name is mentioned.

However, for you, dear reader, it can’t be interesting to read about every single time I cry when something reminds me of Jane. So, here is a round up of things that have made me cry.

Thursday: Tears at the car dealer
Whilst chatting about a possible new car (I am considering a smaller, cheaper and older car), a song came on. “You to me are everything” by The Real Thing. Not a special song as such but I used to sing the first line of the chorus to Jane, and she would then answer by singing the violin-riff after (Listen to the chorus on YouTube and you’ll understand) Even when Jane was very confused, we would stand in a cuddle, arms around each other and I would sing in her ear, and she would respond.

 

Whilst at the car dealer, the song came on the radio and I burst in to tears right away. The man was nice and did not recoil in horror because I had already told him Jane had died. I just asked him if we could continue the chat outside.

Monday: Tears at Doc Martin

I bought the DVD boxset of 4 series of Doc Martin. We had seen most of them years ago and even visited the place in Cornwall where they film it. I went back last month as well. In February, we sat at home, spending our days watching TV. We watched the entire boxset in about 2 weeks. Whenever they showed shots of Port Isaac, we used to smile at eachother and say: We were theeeere! Again, something we shared and loved. Together.
On Monday, the new series started. I was crying before the opening credits had even finished.

Wednesday: Australian tears
When we were in Scotland in January this year, the cottage had a collection of DVDs. One night we watched the film Australia. Jane did not seem to understand most of it but we sat together on the sofa, her legs across my lap and watched it from under a blanket. Together.
This afternoon I was watching TV and Film4 announced They will be screening Australia on Monday. I was instantly back in Scotland on the sofa with Jane.

And I cried. And cried. And cried. Not quite as much as I did in Cornwall but still…for about an hour. I looked at the photos from the Scotland trip. I looked at the Scotland video. Everytime when I closed my eyes and pictured us there together, I cried some more.


So as you can see, it is set off by very specific memories of things we did together. And usually only when I am reminded of things unexpectedly.

When I am crying, I feel extremely low and desperately bleak about a future without Jane. But as soon as I have stopped crying, somehow the fear of the future goes away. Just as well because it would be pretty rubbish to feel the deep despair all the time.

Interestingly, I seem to be much much more emotional when reminded of things Jane & I did when she was ill. I can think of our ski trips in 2006, 2007 and 2008 without any emotions at all. But recent memories are totally different. So let’s say from after March 2009. I think this is related to the fact that in that time, Jane became very depedant on me and our relationship changed completely, emotionally. It became a lot like having a permanently confused child. She was easy to please, easily happy with the simplest joys. She looked to me to make her feel safe and loved. And that is what I tried to do.

But no matter how much I loved her…it wasn’t enough to save her.

20th Sep2011

Healing is an odd thing

by Dutchcloggie

I left a comment on another blog about crying and healing.

We want the wound to heal but we seem to want a nice big scar to remind us how much it once hurt

Lately I have been crying a bit more regularly than before. About different things and with a different intensity. Previously the crying was mostly about the raw pain of the loss. The feeling of loneliness and the hole Jane has left in my life. Now it is more about specific things that remind me. A song, a tv show, a memory.

So does that mean I am healing?

I have addressed the strange conundrum of unwanted healing before. I want to heal. I want life to get better again. I want to be able to think of Jane without bursting in to tears. I want to think of a future without feeling guilty for even thinking about happiness that does not involve Jane.

And yet, I feel a sense of panic every time I realise the healing is happening. Not guilt really. But sadness. The healing train of life thunders on. I have no say in how fast it is going. I only know I can not get off because that would be disasterous. Sometimes it pauses at a station for a bit but it can not stay in the same place. I need to move on.

But seeing Jane not coming along on the trip, seeing her fall further behind, is distressing. I want the healing to stop. I don’t want Jane to slip away from me.

But wait, did I not just say I want to feel better? I do. So why am I distressed about feeling better?

I think it is the realisation that Jane’s memory is no replacement for Jane actually being alive and with me. A memory simply does not evoke the same feelings of love, joy, pleasure or sadness. And I miss feeling that. I miss the feeling in my stomach I used to get from just looking at her. I miss the physical surge of love, the overwhelming sense of adoration I used to get when I held her hand. So I have to say goodbye not only to Jane, but also to the strong emotions she evoked in me. And it seems I can not pick and choose. I can not say: I want the sadness to go away but hold on to the love and joy. It is all or nothing.

I don’t like feeling sad. But I don’t mind crying. Because it means Jane is not completely gone. It means she still evokes strong feelings. And in the future, the feelings her memory evokes will be less strong. Less overwhelming. The wound heals.

But I want a nice big scar. Just so that when I look at it, it helps me remember how deeply I felt for her once.

And how she will never be forgotten.

And if you’ll excuse me, I’m off for some tears as writing this blog post has made me feel very upset.

24th Sep2011

Facebook dilemma: To unfriend or not to unfriend

by Dutchcloggie

Yesterday, the first two lines of a comedy song came to me.

We’re married on Facebook, but not in real life
When is it time to unfriend my dead wife?

Unfortunately that’s all I have…In my head I was going to write this funny, bittersweet song about the problem with social networking and death. In reality, I am rubbish at writing songs and I’m not that funny.

So feel free to take the idea and run with it.

Seriously though…when DO I unfriend Jane on Facebook? There are a number of relationship status options and none of them are acceptable to me.

Married: This is the current situation. I never really was married according to the law and since her death, I most certainly am no more. Yet this one means her picture is listed on my profile as my wife and it connects her to me.

Single: Not an option. I am not single by choice.

Widow: Would be the best choice. However, if you select your status as Widow, Facebook automatically freezes the profile of the person you previously listed as your spouse. And that means nobody has access to it anymore. It goes in to some state of limbo. It is frozen in time and nobody can send messages, post to the wall or anything. And I don’t like that either. Because sometimes people still leave something on her wall. Or send her a message. I do.

Is in an open relationship with Jane Daniel Death does that to a relationship. But I don’t like open relationships. It relates to monogamy and Jane & I always were completely devoted to each other.

It’s complicated:This might be the best option. Because it IS complicated. Well, it is for me. The good thing about this one is that you can still link to someone to be complicated with.

The thing is that if I end my relationship with Jane on Facebook, she will no longer appear anywhere on my profile. And since she is not making any new posts on Facebook, nobody will be reminded of her on Facebook. It will look like we were never in a relationship.

Like the list of recently dialled numbers or most used email addresses, she will slip down the list and eventually disappear completely.

I guess this is the modern day equivalent of deciding when to take your wedding ring off. One day I will be ready for it. When I can replace the wedding ring with something else. With happy memories instead of crushing sadness. When removing the ring or Facebook link means I am ready for something new to take its place. Rather than removing something and see a large gaping hole.

Ps: I need to say that the two lines of my ‘song’ popped in my head when listening to this brilliant Janis Ian song.


27th Sep2011

My wife recently died and I…

by Dutchcloggie

I used to be perfectly able to say that sentence without breaking down in tears. It was a statement of fact, not the release of an emotion.

Lately however, I can’t say it without crying. In front of complete strangers. Every time.

What is going on? It isn’t the fact that it has suddenly hit me. It is the fact that it is slowly infiltrating every single part of my life. It pops up in everything I do.

I have realised this evening that there is a difference. When someone asks me why I am moving house, I can state a fact: my wife died and I need to save money.

However, when Jane’s death is an explanation for my ‘weakness’ or an emotion, I can’t say it without crying. Because it is not stating a fact. It is revealing something about my emotions.

This evening, just before Maths class, I walked up to two ladies with whom I had a little snappy exchange last week. I apologised for snapping at them (even when it wasn’t my fault). I just wanted to say I was in a bad mood.

Instead I said: I was in a bad mood because my wife died and I am trying to get my life back together and I am feeling pretty shit most of the time so I am sorry I snapped at you I am not usually like that.

And I was in tears as I said it.

Later on, I spoke to the Maths teacher and I wanted to ask about absence. I wanted to know what the repercussions are if I miss a class. He asked why I seemed to think about missing classes in advance. So I wanted to say that I might not always feel up to going.

Instead I burst into tears again when I said: my wife recently died and I am not always feeling up to leaving the house so if it happens on a maths night, I might not make it to class and I don’t want to get in trouble for it later.

I think this is all because it seems I have become more aware of the deeper emotional impact of Jane’s death. Impact beyond the loneliness and the physical absence.

The insecurity when making decisions, when the person you trust most is not there to help.

The fear of spiders and the knowledge that nobody will solve it for you and hug you afterwards.

I miss doing nice things for the person I love and seeing her smile. Making someone happy is a deeply emotional and satisfying thing. I miss it.

Maybe these things are emerging now, slowly, because I am trying to return to normal life. So I come across every day situations where I never really thought of Jane because she was just there. What to have for dinner. What to watch on tv. What to do on a Saturday.

Shit. This post is not very coherent. In my head I had planned a well constructed post but clearly the thoughts are not crystalised yet. Maybe more later when I know what I am actually trying to say.

The bottom line is that I am a lot more teary these days. And that I really would like more crying with friends. But somehow I have started to feel like I am burdening people if I still talk about Jane so much.

I used to enjoy listening to the Indigo Girls in the car. Jane and I would sing along in 2-part harmony. Just after Jane died, I could listen to the music and remember the joy. These days, I can sing along but all I hear is the emptyness of a voice that is missing. And so I cry. But I don’t stop singing. I usually end up shouting along to the music in tears.

The song “I believe in love” is about a couple trying to find common ground again and fighting for their relationship. It did not apply to Jane and me. But it had the following lines:

Most of what will happen now is way out of our hands
So just let it go, see where it lands

At that point, we would always take each other’s hands and smile at eachother. We knew what we were saying there. We knew what was waiting for Jane around the corner.

Cheesy video alert for this song.


01st Oct2011

Moving house

by Dutchcloggie

Tomorrow I am moving from our lovely big flat in to a tiny double room. Like stepping back in time almost 15 years.

Let’s just say I am not coping as well as I thought I was. As I sit here on the floor of the flat amidst piles of flatpack furniture, clothes, memories and all kinds of other things I will have to leave behind, all I can do is cry.

I went to see my new room today and measured it. And it turns out that the fabulous new StudyBed I was going to purchase is most likely simply too big for the room. So I can not have it. A bed that turns from bed in to desk in a second seemed a brilliant idea. It meant I would not feel like being holed up in a tiny tiny bedroom all day. In a second, I would hide the bed and have a living room instead. But now it does not fit. And that small fact has broken the camel’s back. I can not do this.

How did it come to this. Why did I not find a way so that I had enough money to stay here? Why didI not go back to work sooner so I maybe would not have had to move? Why did I jot get off my lazy arse and go back to work like so many other widows? Why does the fucking probate take so long? If that had been quicker, I would not have to move.

Ironically I may well have a job by the end of next week. And apparently probate is going ‘well’ and they may be able to release the cash part of my inheritance soon.

All too late.

It is all going wrong. I knew something was not right. It was all going too well. It was all so much easier than I thought it would be. I was waiting for something to happen. It could not be this easy to get on with life after losing the thing you love more than life itself.

It isn’t. It isn’t just difficult, it is virtually impossible.

Somebody please make this all go away. I don’t want this anymore.

05th Oct2011

Moved

by Dutchcloggie

After Saturday’s rather emotional outpouring of confusion, time for an update about my move.

On Sunday, I moved in to my new room. After living in a house and flat with Jane, moving back into a single room is a huge adjustment. My friends K & R came over on Sunday to help. As it turned out they were needed mostly for emotional support and to keep me from losing my mind. I was running around, achieving nothing until K said: Right. What am I actually supposed to be DOING here?

I took them to my new room and asked them to have a think of what furniture they thought I should take. They both decided the studybed would fit just fine, that it was just me having a complete panic. I ordered the bed yesterday. The last time I spent that amount of money was when I booked a trip for 2 to Stockholm in Februari! Geez.

In the end, the room looks ok. If I were a student, I would be pretty chuffed with a room like mine. But I am not a student. I am 36. And all I have to show for 8 years with Jane is a rise/recline chair and a handful of photographs. That’s what is so hard. I look around my new room and think: This is what I have left? Yes I have stored some things at friends: camping gear, snowboard stuff, our double bed. But most things are more expensive to store than they would be to buy new. So logically, it makes sense to just sell them and replace them later. I am now a proper EBayer 🙂

My landlady, who is quite nice, also lives in the house. She is doing the refurbishments all by herself. And since she is as chaotic as I am, she is working on everything at the same time. Since I would really like her to finish the second bathroom first, I volunteered to paint the kitchen, just so that it would not distract her.

I enjoyed painting the first part yesterday. Today I am paintinting the ceiling.

It keeps me busy and gives me a feeling of actually accomplishing something.

Yes the room is small. Yes it is a step back. But at least I have people to talk to on a regular basis. I am not worried about being able to pay the rent.

There are good things about this.

Just wish I could show Jane how things are going.

05th Oct2011

Today – Rebecca Blackman

by Dutchcloggie

I few years back, I heard a song about someone who loses a loved one. I liked it then. After Jane’s passing, I remembered the song and tried to find it again. I only remembered one line of the lyrics but I emailed a DJ of a podcast where I *thought* heard it first. The man came back to me within minutes to give me all the details I needed. He said he would never forget that song. And neither will I now.

Here it is. It is pretty emotional. I was in tears when hearing it again. It is called “Today” by Rebecca Blackman.

Turn the light out
Leave the door
Like you’re a small child again
This could be the last time
I say
See you in the morning
And you hear me walk downstairs

The TV’s on
But I’m not listening
To the blurred stream of words
The newsreader’s talking but
She doesn’t know
What happened today

She hasn’t been at the hospital
Waiting around
For results you don’t want to hear
She didn’t wake up forgetting
Them remember it wasn’t a dream

Everyone’s smiling
The sun’s out
The weather’s hot
I’m just trying to keep it together
So what about sandals and BBQ’s
I really don’t care

The TV’s on but I’m not listening
To the blurred stream of words
The newsreader’s reading news
But she don’t know
What happened today

She hasn’t been cancelling holidays
For three
Maybe two
She hasn’t swallowed a lump in her throat
She didn’t wake up forgetting
Then remember it all again

Settle down
I’ll tuck you in
That’s all I can do for now
I’ll turn the light out
Leave the door

Be there a potion to drink
I’d make it for you
A dance that would heal
I’d dance
I can’t help my jealousy
I don’t like it
But it’s there
They don’t know what’s been happening today

They haven’t been at your bedside
Stroking your face
They haven’t been there with you
Squeezing their hand
They didn’t wake up forgetting
And for a second feel fine

They don’t know what really happened today

You can listen to the song here: Rebecca Blackman

06th Oct2011

Our trip to Stockholm

by Dutchcloggie

BunnyFactor10 · Post
Our trip to Stockholm
Posting as BunnyFactor10

Finally I made the time to put a video together of our trip to Stockholm in March this year.

Happy memories.


09th Oct2011

Astrocytoma: 6 years in 8 MRI scans

by Dutchcloggie

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

January 2006
Diffuse Astrocytoma MRI January 2006

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

January 2007
Diffuse Astrocytoma MRI January 2007

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

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

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

July 2009
Anaplastic Astrocytoma MRI July 2009

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

January 2010
Anaplastic Astrocytoma MRI January 2010

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

June 2010
Anaplastic Astrocytoma MRI June 2010

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

September 2010
Anaplastic Astrocytoma September 2010

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

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

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

12th Oct2011

Getting rid of stuff

by Dutchcloggie

I have just driven to a town 15 miles away to give 2 boxes of my Jane’s clothes to the Cancer Research UK shop. I wanted it to go to the hospice shop as they cared for Jane so brilliantly but I just could not bear the idea of bumping in to someone in town wearing her clothes.

I still have one box which I am keeping but I am in tears now and had to stop on the way home to compose myself.

We used to joke about our clothes. We had the same clothes size for most of our relationship so when we moved in together our wardrobes simply doubled and we just wore each other’s stuff.

I have had to move from our lovely flat in to a tiny room in a shared house so I have been getting rid of so many things recently. Feels there is nothing left of our 8 years together but some pictures and my memories…

13th Oct2011

A (Tena) pants shopping trip

by Dutchcloggie

Memories are like a Ninja: They hide in the dark and you don’t know they are there until they attack. And when they attack, it is fast and furious and there is no defence.

Last night after my biology class at college, I went to the supermarket. I was not feeling particularly sad as I walked around a little bit aimlessly, not sure what I needed. Shopping is always a bit depressing these days. I find supermarkets very overwhelming and confusing.

Many times in the past I would call Jane whilst shopping and ask her for help in calming me down and help me make sense of the enormous number of choices to be made when buying things. My ADHD means that making choices can be really stressful. She was always calm and understanding. Never seemed to think: Geez, you are 30+, surely you can do some shopping without trouble.

As I walked around, I came past the shelves with Tena Lady incontinence products. And then it happened. I froze on the spot. I stared at the various products on offer. The various types of pants in all kinds of sizes and pretty patterns. And I remembered all those times I had to buy them for Jane. How every shopping trip included large numbers of Pants.

Images of the times we had to struggle in small public toilets when her pants needed changing. Memories of how I could not leave the house without the Tena Bag: a bag with spare pants, babywipes and trousers. Reminders of our ski trip in Scotland when, after I had dressed Jane in all her ski gear with ski boots on and skis strapped to her feet, she spoke the words: I need a wee. Back to the toilets we went, all clothes off, sort it out and back out again. A delay of 20 minutes.

Reminders of when she trusted me. Reminders of when she let me help her. Reminders of how deeply we were connected.

Reminders of when she was still alive.

And I cried. I cried and cried. Right there, next to the Tena Lady pants. I did not want to give up and leave the shop because I did need food. So with silent tears streaming down my face, I wandered around the isles. As usual, people noticed but said nothing. Even when I asked a lovely lady where I could find the UHT milk, she smiled as if oblivious and pointed me in the right direction. Even the lady at the check out wished me a lovely rest of the evening, as I wiped the tears off my face…

All I wanted was for someone to ask: Are you ok? Grief in public is so incredibly lonely. I understand people are reluctant so I am not angry about it or anything. But the loneliness is insufferable. All you want is some kindness. Someone, ANYONE who notices you are crumbling. And when that doesn’t happen, things just get worse. I wanted to scream: somebody please please please speak to me. Somebody please ask me why I am crying so I can say the words out loud: the love of my life died and I am not coping very well tonight.

Instead, I bought some roses for Jane and got in the car. And I cried and cried. Alone.

Next time I see Tena Pants, the effect will not be so dramatic. Now I know I can either avoid them or be in control of the situation because I know what might happen. The problem is the I simply have no idea at all what will bring back a painful memory. Absolutely anything can and I don’t know until it happens. Because we used to have a normal life together, ANYTHING that happens in a normal life can bring back memories. So it is not a matter of simply avoiding things that might be upsetting. You don’t KNOW which things are upsetting. Something that did not upset me yesterday might suddenly be very upsetting today.

Something tells me that I will have to go through every single part of normal life and experience all the surprising moments of pain. And only after having been through all of them will normal life not be a constant reminder of Jane’s absence.

Finally, for the first time since Jane’s cremation, I bought flowers for her. In my new room, it seems Jane has found her own spot. In the flat, her ashes were just moved around all the time.

22nd Oct2011

Jane’s last holiday

by Dutchcloggie

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

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

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

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

24th Oct2011

Do you care? I do.

by Dutchcloggie

More than a week since the last post. Thanks to those who asked how I was doing. Nice to know some people are holding their breath waiting for news from me. My advice would be not to hold your breath. It might kill you 🙂

I guess the reason for the lack of posts is because life is a bit boring and tedious at the moment. I cry every day, am going to college and started training for my new job today. I am going to work as a home carer and I look forward to starting. It is a bit of an adjustment, not having worked for more than a year.

Last week in the local paper, just after having been offered the job as a regular home carer, I noticed that the same team that cared for Jane in her last 8 weeks are looking for new carers to join ther End of Life services. I would really like to join the team because I know what an incredible difference it made to me and Jane, having such great support. But it has only been 4 months & 3 weeks since Jane died. Is that too soon to work in palliative care? I think I will only know for sure once I am on the job.

But that is not good enough. Because I think that if it turns out that I am not ready and I break down, remembering all we went through, it might be a major setback in my grieving process. End of life care is special. It is extremely rewarding but also emotionally draining. You are not just dealing with the patient but also with their, often very anxious, family. I can do the actual work and caring. I think I can provide the caring without gettng upset. Because the person I care for is not Jane. But I fear I might struggle to deal with the upset family members. I worry that it might remind me too much of my own fears and feelings. I fear that if I cry, it won’t be out of compassion for them, but my own grieving coming back to me. I am not explaining it very well but to me, there is a very big difference.

So after careful consideration, I have decided that this might simply be coming too early for me. If I can not feel sure about my ability to do the job right and to keep my emotions in check on the job, then I should not do it. Secondly, I don’t want to put myself through the emotional pain of applying, only to be told by the applications team that their experience tells them I should not be doing the job. Nothing worse than other people telling you what you really already know deep down but are trying to ignore. I will go and be a regular home carer first and see how that goes.

On a different note, I have been to a few open days for university and I most definitely want to go to Plymouth University. Great open day, nice people, good facilities and beautiful nature on the doorstep. Now I just need to finish my application and send it off.

Finally, I have decisions to make about what to do for Christmas. Needless to say, I would prefer to hibernate for the entire month of December, thus skipping what would have been Jane’s 28th birthday, Christmas and related festivities, and wake up on the other side on new year’s eve. I will write more about that in a few days.

28th Oct2011

Christmas

by Dutchcloggie

Christmas…Christmas…Christmas.

That dreaded time of year for everyone who has lost a loved one. So, before I do anything else, let’s have a listen to Australian Tim Minchin’s White Wine in the Sun. It is a beautiful song that, apart from the bit about his daughter, sums up how I feel about the whole thing. Or rather, how I used to feel about it.


The first Christmas without Jane.

Of course my family invited me, or perhaps even assumed, to spend Christmas with them. My parents and my sister and her family. And for some reason that I could not understand, I really realy did not want that. In fact, I could think of nothing worse.

But why? Not because of the company. I love being with my family. They are caring, lovely and have been wonderful throughout all this. And they loved Jane. So what could be better than spending Christmas with people who love me, care for me and know how much I loved Jane. If I cry, they will cry with me. If I laugh, they will understand that joy is likely to be short lived.

And yet…

It took me a couple of weeks to understand the problem. And even then, I might not be able to fully explain it.

Jane did not have many friends before we met. We were both socially a bit lazy, finding each other’s company enough most of the time. So all the people I know in the UK are friends I made whilst we were together. Only a couple of people knew Jane before they knew me.

I have little or no real contact with Jane’s family. I have met her mother twice since the funeral and her sister has vanished to Oxford. We were never really close. So I basically very very rarely have any contact with people from Jane’s past. People who “represent” Jane. People who knew and loved Jane before I did. People with stories I don’t know. People who were part of her life before I was. People who can “represent” her.

My friends will ask me how I am. And I tell them. Sometimes I even cry when I tell them. But there is very little Jane in my life because most people around me have been in my life at most 6 years and I have no connection with Jane and her past through them.

Apart from a couple of Jane’s friends from school.

They are the closest thing to Jane I still have. Even if they were not my closest friends (one of them I only really met last year), they were important to Jane and so they are important to me. They are my link to a part of Jane that is forever lost to me. They have memories that I will now only be able to get from them because Jane can’t tell me anymore. Oh, and the fact that I actually really like them…

And one of them invited me over for Christmas. In the USA where she now lives. And I am going.

Not so I can spend the entire Christmas talking about Jane. But for some reason the unspoken connection really matters to me.

But all this had to sort itself out in my head before I could tell my family I was going to spend Christmas not with the people who love me most but with a friend I have only recently come to know. Otherwise it would sound like I was simply saying: I just don’t want to spend Christmas with you.

So there it is. My first Christmas without Jane. It will be horrible. Excruciating. With hopefully some enjoyable bits. But surviving it is the best I can aim for right now.

03rd Nov2011

Am I healing?

by Dutchcloggie

It is now 5 months since Jane died. How am I doing? Am I healing? Are things easier now?

When Elisabeth Kubler-Ross introduced her 5 stages of grief (Denial, Anger, Bargaining, Depression and Acceptance), she meant well but in a way did a lot of damage. Those who have not experienced grief more or less expect us to go through these stages in a linear fashion, one after the other. That means that after a while, we should have reached stage 5: Acceptance.

Well let me tell you: the 5 stages are bullshit. I was never in denial or angry. Nor did I ever bargain with death. I never felt guilty. I feel regret about things I said or stuff we did not do. But not guilt. I accepted Jane’s death from the moment she died.

So the only ‘stage’ left is depression. Well yes. The love of my life, my past, present and future has been taken away. Nothing left but darkness, loss and sadness. So I am depressed. Not suffering from depression. But I am depressed at the moment.

I have good times with people. I have no good times on my own. Ever. But why is it harder now than it was 3 months ago?

Healing happens when you encounter situations in life that you would have faced with your partner and suddenly you are alone facing them. And then you find you CAN live through those situations. And the second time that situation comes around, you will find you can cope better.

I believe this is why I, like so many widows, I found the first few months after Jane’s death ‘easier’. Those first few weeks and months, I was so engrossed in my loss that I did not really experience life. So I could not heal. Once I started to get back to life suddenly I was shopping and cooking for one, out with friends for whom life has more or less gone on as normal whilst my entire life and future lies in ruins before me. Bit by bit, I came across bits of life that used to include Jane but no longer do.

So instead of an all-covering grey blanket of loss and depression, it has now changed in to a daily parade of sharp moments of shock and loss. In the early days, I expected, and was expected, to cry all the time. These days, I can be ‘perfectly fine’, actually feeling ok and enjoying something when suddenly, out of the blue, something triggers a memory or emotion. And then I just crumble. And then it passes and I get up again. Until the next moment.

My pain has nothing to do with how long it has been since I last spoke to Jane or how long since I last touched her. Grief is about that one moment, no matter how long after her death, that one moment when I really need her and she’s not there.

It is like walking around town, knowing there is a sniper waiting for you. You KNOW he will shoot but you don’t know where he is or when he will strike. So you don’t know what to avoid, where is safe.

This gives me two choices: I hide from my Grief Sniper by curling up in a ball in my house and never participate in life. This will mean more prolonged but more shallow grief. Or, I go on as normal as possible, knowing I will get hit and that there will be moments of very intense pain.

I choose life.

But please don’t expect me to enjoy it yet.

08th Nov2011

What it is really like to be a widow

by Dutchcloggie

With Jane’s death, I grieve the loss of so much more than someone I merely loved or was close to. I grieve instead the loss of the one I loved most deeply, cherished and felt the very closest to. The one I swore commitment to when we married. The one I shared the ultimate partnership with to live as one.

The one who embodied my true sense of home. The one who was my best friend and who was to be my companion for life. The one I confided in, depended on and trusted most. The one who really knew, understood and accepted me as I am. The one I felt safe and protected with. The one I shared private moments and intimate feelings with. The one I mated souls with.

But it is not just that this most precious person has been torn from my life, as unbearably heartbreaking as that alone is. With Jane’s death came other losses I am grieving for:

The loss of who I was when I was with her.
The loss of the couple I was once half of.
The loss of the life partnership we once formed.
The loss of the ‘wife’ role I once embraced.
The loss of the life I once lived.
The loss of the plans we once made.
The loss of the dreams we once shared.
The loss of the future I once envisioned.

Amidst all this, I am also suddenly confronted with many hardships I never expected to face at this point in my life. Additional challenges less apparent to others but all too real and terrifying to me. I must now find it within myself:

To create a new identity.
To redefine my role in life.
To establish a new connection to the world.
To build a new network of social relationships.
To discover a new sense of purpose.
To formulate a new set of goals.
To decide on a new direction for my future.

And I have to do this without dishonouring my former life, but while suppressing bittersweet memories of that life, so that they not hold me back. Memories of happier times mostly, but also those of Jane’s illness and death. I have to deal with the feelings of guilt and disloyalty as I attempt to forget and move forward, but with my heart still tied so tightly to the past.

And I have to do all these things at the lowest possible point of my life in the worst state imaginable. When I am the weakest, most vulnerable, most insecure, most isolated, most heartbroken and most emotionally exhausted I have ever been. Without that one person I am so used to relying on to help get me through life’s greatest challenges. The one who, just by being there, would have provided me emotional comfort and support to draw upon, as well as the strength and confidence I need to complete those tasks and so much more.

But now I face all this alone.

12th Nov2011

Jane’s post: What radiotherapy is really like

by Dutchcloggie

Going through files on Jane’s laptop, I found this unfinished blogpost she wrote about her radiotherapy. It dates back to 19th March 2009. The radiotherapy had finished a month earlier and Jane was suffering with severe side effects from the treatment.

=========

I am going to try to convey what it is like to have finished radiotherapy and the side effects that go along with it. Whilst it hasn’t all been plain sailing, the side effects to report at present (my treatment lasted for six weeks from 05/01/09 to 18/03/09) are tiredness, forgetfulness, stupidity and generally feeling like my brain is wrapped in cling film. I feel like I am totally unable to function.

Also, I am still on the steroids (tapering them off slowly) which means that I am quite hungry and need food. I try to eat fruit and healthy cereal. Thank the lord for cornflakes with raisins.

The tiredness is a direct effect of the treatment but it is not really known why this happens. If you are taking steroids these can also cause tiredness – particularly when you stop taking them. Travelling to the hospital for treatment can also be a cause of tiredness. Unfortunately, the tiredness does not go away immediately when the treatment ends, but usually carries on for at least six weeks. Getting better is a slow process. The steroids cause havoc with my appetite. I feel hungry all the time so I EAT EAT EAT. It’s difficult to have any control but I must otherwise i’ll just get bigger and bigger.

I don’t fit into any of my jeans anymore so my wardrobe is limited to tracky Bs and PJ trousers. Both very comfy but not suitable for leaving the house. And i’m developing some shocking stretch marks which is probably the most upsetting part. I am losing weight slowly (too slowly) by eating sensible things – bleugh – and limiting portion sizes and going to the gym regularly. UGH. I have a scan in a couple of months to see what effect the radiotherapy has had. There’s no point in doing it sooner because it will all look abnormal and will worry the radiographers. I will keep everyone updated with the results. I spoke to my consultant the other day who said I was looking well, which was nice. Made me feel less blimp-like.

16th Nov2011

How grieving changes

by Dutchcloggie

I miss Jane. But when I think of Jane, I think of Jane the way she was the last 10 months of her life. When I see pictures or watch footage of the last 10 months, I get a lot more emotional than when thinking of the Jane I married years ago. That Jane seems so far away. Almost a different person that needs to be mourned separately.

Why? I don’t really know. The last year we had together was so incredibly intense. It was filed with nothing but love. My love for her reached a depth I never thought possible. The feeling of being responsible for her, that it was up to me to make her as happy as possible and to keep her safe was rewarding. Yes, in a selfish way, it gave me a purpose. The feeling of being needed by someone you love so much is a very powerful stimulant. It keeps you going when you would otherwise have given up.

And frankly, Jane was just very endearing and cute when she was ill. Yes, it was sad to see her mental capacity decline but on the other hand, she also became more ‘cute’: she wanted to cuddle all the time, wanted to hold my hand whenever we stepped outside, told me she loved me all the time, trusted me, smiled at me. All the things we sometimes forget to do when we are living busy lives.

This Jane was only Here and Now.
She was not our past and not our future.

I miss caring for Jane. I miss my hand being held. I miss the smile she gave me when we were watching Doc Martin. I miss her. But……

That Jane was ill. I miss that Jane immensely. But to a certain extend, I can accept that she died. That Jane was a different version of my Jane. That Jane was ill. That Jane was dying. The outcome was inevitable. That Jane was always going to be temporary. That Jane was suffering and is no longer suffering now. So I can more or less accept that without anger. Just sadness.

Recently, when thinking of Jane, I have started to think of the healthy, happy Jane I knew for so many years. The vibrant, beautiful, witty, funny and fiercely intelligent woman who stole my heart. And I think of the good times we had. Of the future we had planned. Of all she had to offer to the world. Of what we had together.

This Jane had a future and a past. With me.
This Jane was my life. My future.

Of what we will never have.

And I cry. And cry. And cry.

And the feeling of incredulity has arrived. I constantly wonder: How the FUCK did this happen to her. To me. To us? What happened?

But mostly: I miss her so much. The future looks so empty. I am not saying I will never meet anyone else. I probably will. But the idea of never having Jane in my future is beyond words.

And I cry. And cry. Last week was absolutely terrible. I was unable to function. I just cried and cried. Did not go to college. I just cried.

I have massive pictures of Jane on my wall. They gave me comfort when I was mourning the ill Jane. Because they reminded me of what she used to look like. They helped me remember the happy, healthy Jane. Now these same pictures make me cry. Because they are not just pictures of Jane anymore. They have become knives of memories that cut so deep. Like they are actively trying to say: LOOK AT THE LIFE YOU ARE MISSING! The pictures are rubbing in the fact that I will never have that again with Jane.

I am worried that this phase of mourning will be much harder to overcome. Much harder to live with. It is easier to accept a sick woman has died than a healthy one.

I am so incredibly lost. So incredibly sad. So incredibly empty.

21st Nov2011

The Widow Clique

by Dutchcloggie

Warning: Long self-indulgent post. Written more to get stuff off my chest than to inform the world… If you can be bothered to read until the end, you are impressive.

Losing your partner is like nothing else. It is not like losing your child, parent or dear pet. And it is certainly nothing like divorce. It is unique. Not worse. Different.

Since I don’t know any other widows, I went online to look for support and understanding from those who experienced the same kind of pain of losing your spouse at a young age. My first impression of the messageboard was that many people were just so….angry.

I have had a lot of emotions about Jane’s death but anger is not really one of them. Nobody is to blame for her death. The doctors did the best they could. There is no God so nobody to blame. So who am I supposed to be angry at?

Much of the anger of the people on the messageboard seems to be directed at those people they refer to as a DGI: Don’t Get It. Cruel remarks, ignorant invitations and evil utterances from people that are supposed to be friends.

Things such as: Now he is dead, it enables you to travel. Are you not a little glad he is gone?
Or: She’s been gone for 3 months and you are still not ready to date again?
Or: I know exactly how you feel because my cat died last month and I am very sad about that.

People really say that? What kind of friends and family do these people have? No wonder they are angry. No wonder they flock to a messageboard to vent. However, there was also a lot of anger that I did not understand. Anger about totally innocent remarks that I just could not interpret they way they did. Quite apart from the fact that I don’t like the idea of dividing the world in to Good People (Widows) and Bad People (DGIs who have to prove they are wiling to try and understand before they are allowed in to the Understands category, although they will never really be accepted there).

Like the woman who was angry at her friends for inviting her to a dinner party. How dare these people think she would enjoy spending the evening with a married couple, having to watch them be happy together and pretend all was fine when she had just lost her future. How insensitive of these friends. Very DGI.

Or the woman who felt incredibly annoyed when her neighbour invited her to the neighbourhood BBQ. How dare this woman think she would just be able to enjoy herself? Spend the afternoon with happy families around her, talking to people who really don’t give a toss about how devastated she is feeling and most certainly don’t want to hear about her grief. How insensitive! Typical DGI.

Pardon? I might be missing something but how did these people even make that leap? How can an invitation, probably extended by people who care and wish to give you a chance to be amongst other people be turned around into something that is apparently deliberately nasty? What is wrong with thinking: They mean well but I am not ready for that. Why is it their fault for even asking?

At times I would point out that these people most likely had good intentions and that I was at a loss as to understand why this was an example of ‘DGI behaviour’. Surely by thinking like this, these people (mostly women) would push away people who might be able to offer support, thus prolonging their loneliness and increasing their anger? Wasn’t gentle education the better way, instead of dismissive anger? I was told a few times that I was wrong.

I then committed a cardinal sin. I wrote a long post about seeking common ground with those who have not lost their spouses but may be able to understand parts of our pain.

The woman whose husband left her suddenly might understand the darkness and loneliness of spending Friday nights on her own with no company to look forward to at the weekend. She might understand how her future has been destroyed in the space of a few minutes. How all her hopes and dreams have to be re-evaluated. If she said: I understand how you feel because I am divorced, I would punch her on the nose. However, if she said: “I can imagine what those empty, cold evenings are like because I too feel like that some times.” then we can talk about our shared pain and find understanding.

Or the guy who lost his dog. He should not say he understands my loss because he lost his dog. I will slap him. But he might say he understands how the house is suddenly so empty, so devoid of life, no joy.

I explained how this felt like a good way to get support from people you may initially think have ‘nothing to offer’. And by actually mentioning this to your friends, it might break down their barriers. Because they might think: I have ‘only’ lost my grandmother so I should probably not talk about my loss to her. By doing this, you might open up a whole new avenue of support and dialogue with your friends.

It did not take long for the backlash to start. A few people wrote to say they agreed with me. Then a few people started telling me I should not tell other people how to grieve. That I was wrong. That I was being a DGI myself. They said that I was asking them to smile at people who compared their loss to the loss of a pet. That I was saying their spouse was worth no more than a dog. Or a goldfish.

One widow wrote a long message explaining how she was extremely worried about me and my grieving. That it was obvious that I was not doing it right. That I was clearly consumed by anger and jealousy and that I was lashing out at the other widows on this board by telling them they were doing it wrong. She even sent me her phone number and urged me to contact her when I got to the USA. When I kindly rebutted her, others came out of the dark, telling me I was entitled to my opinion, even if I was clearly wrong. That I was deliberately hurting and attacking people. That I should realise that my posts can be hurtful for people who are only recently widowed and that I should give people time to come to this kind of rationalisation on their own. Clearly the fact that I realised all this after only being a widow for 6 months made no difference.

For a couple of posts, I tried to explain they were misinterpreting my words. This was followed only by more accusations of ‘not being open to other people’s opinions’. My anger and pain were clearly hidden under a blanket of detached rationalisation…..

I gave up. I told people I no longer wished to be part of the messageboard if the only ‘correct’ way of grieving was to be angry at people and demand the world revolves around you at all times, no matter what other people around you might have gone through or have to offer. Apparently, this too was a sign of my thinly veiled anger and jealousy (at who was not quite clear, but they were all convinced I was angry). My departure was greeted with: Don’t let the door hit your ass on the way out…

Wow….I mean…. really?

Needless to say none of these people has ever read my blog or they would have known I am a lot of things but not angry or close-minded. It does not bother me really. No really. It does not anger me. It has just completely confused me. I can not for the life of me understand why I have offended people so much. I hate offending people and if I did say something offensive, I would like to know what it is exactly so that maybe I can adjust my words for next time. But my repeated asking for the exact offending words was greeted by: I am not even going to bother because you are clearly not willing to listen….

I find human emotions often very confusing. I like people to explain why something upsets them so I can learn and understand them better. It is just incredibly sad that even in a place that is supposed to offer support to people in a similar situation, there is a strict rule on how you are supposed to behave and disagreeing is not allowed.

I guess I will just stick to me real life friends. Because although none of them have lost their partners, most of them understand me perfectly fine.

22nd Nov2011

Weird ways of missing Jane: Excel spreadsheets

by Dutchcloggie

Jane was a wizard with Microsoft Excel. If you were a friend of Jane, it is VERY likely that at some point you asked her for advise on a spreadhseet related matter.

Complicated formulas? Ask Jane.
Making a budget spreadhseet with automated formulas that automatically calculates stuff? Ask Jane.
A Gantt chart that automatically updates itself when you change a detail? Ask Jane.

She did not know this because she knew Excel in detail. She knew this because her mathematical brain realised that there must be a way to capture your requirement in a formula. She would think of that formula and then seek a way to implement that formula in to Excel.

Many times I would ring her from work with a quick question about a problem I was having. She would usually solve the problem for me whilst I was still on the phone. In exceptional circumstances, she would call me back a few minutes later with the answer.

This evening, I am trying to put together a cleaning rota for my shared house. There are 5 tasks and 5 rooms/occupants. Easy enough I hear you say.

However, there are 2 bathrooms. Bathroom 1 is only used by rooms 1 and 2. Bathroom 2 is only used by rooms 3, 4 and 5. So those cleaning tasks are fixed. Leaving the other 3 jobs to be allocated fairly. Obviously the problem is that bathroom 1 only has 2 people cleaning it and bathroom 3 is on a 3-person cycle.

Jane would know how to do this. She would first think of a formula that would fit this pattern. Then she would look at how to implement this formula in Excel. She would have scoffed at my method of doing it by hand.

Never thought a spreadsheet would break my heart…..

28th Nov2011

Dignity in dying?

by Dutchcloggie

In a couple of days it will be 6 months since Jane died. In those six months I have come to terms with many of the things that have happened before and after her death. Now that I work in the home care sector myself, I am acutely aware of some things people (including myself) did wrong when caring for Jane. I don’t blame myself for any of it because I did the best I could. But some things make me very sad when thinking about how awfully exposed and vulnerable Jane must have felt. And she was not able to tell me. Not able to tell me that perhaps she wanted people to knock before they entered the bedroom etc. Just because I did not mind, did not mean she did not mind. But I never asked. And she could never tell.

Once, Jane had a male carer coming in and her face changed. I asked her if she felt uncomfortable with him washing her. She managed to indicate that she was and so I sorted it so that she would no longer have male carers. Maybe that is being picky or unfair to those carers that want to help but no man had ever seen Jane’s private parts and a few weeks before her death did not strike me as a good time to change that habit.

In my recent training, a lot of time was spent on how to preserve the dignity of the patients by doing really simple things. For example, sometimes Jane would be on the commode in the bedroom and I would be making the bed. Since we were so close, it never occurred to me that it would be nice of me to leave Jane alone for a few moments, even if I just hovered outside the bedroom door. Instead of being around when she was doing her private business. The fact that Jane had lost some of her inhibitions due to the tumour did not mean I should not observe them. But I didn’t. I just did not think about it. I did nothing to embarrass her or anything like that. But when you are together for so long, you get quite comfortable around each other and stuff we used to do kind of got pushed to the side for the sake of practicality. We never used to share the bathroom. So why did the fact that Jane could no longer go on her own mean that I had to stay in there with her?

I don’t know, but I did.

I did not once consider that hoisting her in and out of the bed might be making her feel very undignified and upset. I was thinking in such a practical way that all I could see was how useful the hoist was in getting her in and out of bed, enabling Jane to be in the living room with me and her visitors. I did not think to consider that even if Jane would appreciate the practical use of the hoist, it might still be extremely upsetting for her to have to even need one in the first place. Why did this not occur to me?

I don’t know, but it didn’t.

When I think about this, it makes me cry. (I am crying as I type this). It just makes me so incredibly sad to think she must have felt like an object, rather than a person at times. People talking about her, (including me and the carers) over her head, at her bedside as if she wasn’t there. Nothing delicate, nasty or gossipy as such, but just stuff like: what does Jane want for breakfast, does she need the toilet, etc. Just because we already knew Jane was unable to answer does not mean we should not have addressed her FIRST with those questions and then only come to a decision if she was unable to answer. That would at least have given Jane the feeling of having some say in what was happening to her.

Mind you, it wasn’t always like that. Just that we all slipped up sometimes and we should all have spent a little more time on making sure Jane’s dignity, both in choices and in personal care, was the highest priority.

Two examples stand out that are very upsetting for me when I think about it. So I can only imagine how upsetting it must have been for Jane. In both cases, in retrospect, I failed to put Jane’s feelings and well-being first.

The first one is related to the use of the hoist to put Jane in a chair in the living room. I posted about the nightmare we had when we first tried to use it in this blog post. My current training emphasises over and over again that all staff must be trained to use equipment and if you are not trained, you must not use it, no matter how much the patient/family would like you to. The carers did not know how to use the sling Jane was given when they delivered the hoist. They should have said: sorry, we can’t do it.

But they didn’t. Because they knew how much I liked for Jane to be in the living room. And because they thought: How hard can this be?

This was a big mistake. They had no idea of what to do. We all faffed around the bed, rolling Jane around to get the sling around her body, lifting her, putting her back down again when we weren’t sure. Finally we decided to try it and hoisted Jane off the bed. Immediately she began to slip out of the sling and it was obvious she was going to fall out of it, on to the floor. I panicked and thought I noticed Jane had wet herself as well. So we quickly put her back on the bed and decided to leave her in bed for the day since we clearly did not know how to use the hoist.

I cried. I apologised to Jane. But the tears in her eyes broke my heart. She must have felt like a piece of meat on a butcher’s hook. Suffer the indignity of being a Guinea pig.

The next day, the carers tried again. This time it almost went right but when putting Jane back in to bed, she once again slipped out of the sling and we had to grab her by the arms and legs and throw her on the bed to avoid a fall. Once again I cried. Once again, Jane had tears in her eyes.

It turned out that the sling we used was only suitable for people with good upper body strength. Something which Jane obviously did not have. Secondly, the carers were not trained to use that sling, even if it had been the correct one. And thirdly, I was so keen to get Jane in the chair that I did not realise the benefits of being in the chair might not weigh up against the terrible indignity Jane suffered by being in the sling.

Someone should have said: we can not do this. I know that person wasn’t me since I was not a professional carer then. I know the carers were at fault. But if I wasn’t looking out for Jane, then who was going to? Why did I not stop them? Why was it so important for me to do this hoisting? The carers should have said: Sorry but you will have to wait until Monday when our supervisor can give us training or come to Jane and give her the correct sling.

Or what about the two district nurses who came in one night to put in a catheter? They took the duvet covers off, propped Jane’s legs up and proceeded to spend half an hour prodding the catheter in to different holes, talking to each other about how difficult it was to see, shining a torch on Jane’s private parts. I held Jane’s hand as she winced in pain a couple of times. A tear rolled down her cheek. It never occurred to me to cover her up with the duvet as much as possible. After all, she had a t-shirt on. It never occurred to the nurses to talk to Jane about what they were doing to her. After all, she was unable to understand. So they talked to me, I talked to them and other than me soothing Jane, nobody made her feel part of what they were doing to her body.

I know better now. And that is what makes this so upsetting. I *know* I did what I could. I *know* the carers should have done a better job at times. But even so. Some of this seems so obvious to me now. Why did I not think about it back then. Just a small things I could have done to make things a little more dignified for Jane.

I cry when I think about this. I am determined to make sure the people I care for will never have to feel like their dignity is just an afterthought.

30th Nov2011

Six months as a widow

by Dutchcloggie

I don’t know where you are, or even IF you are. Probably not. I am still here 6 months on. Sometimes barely living. Other times I think I am ok. But I will never again be as OK as I was with you. I miss you.

19th Dec2011

Christmas without Jane

by Dutchcloggie

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

Jane in the snow

Christmas 2010. Jane in the snow.

Wrong.

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

First Christmas without Jane.

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

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

14th Feb2012

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

by Dutchcloggie

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

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

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

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

Corinne Lucy

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

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

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

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

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

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

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

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

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

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

Xx
Marieke

Venue:

The Romany
Trinity Avenue
Northampton
NN2 6JN

09th Jun2012

Well that was cool

by Dutchcloggie

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

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

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

Corinne Lucy

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

Life of Pie

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

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

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

02nd Dec2012

29

by Dutchcloggie

Dear Jane,

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

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

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

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

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

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

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

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

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

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

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

X
m

01st May2013

Nearly two years

by Dutchcloggie

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

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

Sleepy JD on ski trip in 2006

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

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

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

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

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

At home a month before her death

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

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

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


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

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

28th May2013

Coming up to two years

by Dutchcloggie

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

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

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

Two years.

Jane in her fencing gear in 2008.

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

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

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

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

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

Never is a long time.

Jane with Bear asleep in the hospice.

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

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

09th Aug2013

Honfleur: In your FACE!

by Dutchcloggie

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

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

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

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

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

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

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

Jane wrote of that day in our Holiday Diary:

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

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

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

And it slapped me in the face.

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

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

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

04th Sep2013

Pastures new…

by Dutchcloggie

Dear Jane,

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

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

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

Bear lives on the bookshelf

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

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

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

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

Fig tree in Italy in 2007

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

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

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

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

20th Nov2014

You should write a book!

by Dutchcloggie

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

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

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

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

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

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

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

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

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

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