30 July 2011

A sad tally...

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

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

Nuff said...

I'm out of here. Good night.

29 July 2011

Two months since you died

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

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

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

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

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

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

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

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

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

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

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

I love you.


27 July 2011

Hable con ella

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

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

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

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

And finally I feel rather stupid.

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


A sad reminder

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

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

24 July 2011

A day in mourning

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

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

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

When I finally drag myself out of bed, in to the shower, I see your toothbrush is no longer there. I miss you. In the shower, I see the shampoo you always used. Can't wash myself with the Dove showercream because it is what I used to wash you in the last few weeks and the smell brings back too many painful memories. So the bottle just sits there as I can't throw it away either.
Getting dressed, I see your clothes that I kept. We used to joke as lesbians of similar size, our wardrobes conveniently doubled when we moved in together. Most of your clothes are in boxes but it seems like a waste to throw away perfectly useable clothes so I wear the same t-shirts I wore before you died. Some of them are mine, some of them are yours. None of your clothes smell of you anymore and believe me, I have inhaled the smell to try and smell you.

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

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

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

Bored with watching tv, I start thinking about dinner. I am not hungry. I remember the food you liked to eat. In the freezer are still your favourite burgers. You will never eat those. Because you are dead.
I am not hungry. Cooking for one is no fun. And we will never again cook together. Because you are dead and I need to cook only for one person.

After a night of watching tv, I turn off all the lights. The silence is deafening, the darkness falls like a black cloud. The bedroom is silent. As I walk in, I quickly turn on the light and the tv because the silence is devastating. I see the t-shirt you wore when you died. And Bear, which has been with us for the entire 6 years of your illness.
As I brush my teeth, I notice your toothbrush is no longer there. Again. That's right. You are dead.

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

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

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

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

Learn to fly: Nice for a funeral

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

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

Let's listen to some of it.

Janis Ian's "Ride me like a wave"
Beautiful South's "Don't marry her, fuck me"
Nine Inch Nails' "I want to fuck you like an animal"

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

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

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

23 July 2011

6 Feet Under and a life lost

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

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

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

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

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

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

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

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

19 July 2011

As time goes by...

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

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

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

The first time I washed our sheets after she died.

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

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

The hairgel I bought 3 months ago is now finished.

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

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

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

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

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

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

17 July 2011

Race for life

So for some strange reason, only last week, I decided to run the Race for Life in aid of Cancer Research UK. I hate running, Jane hated running. So it seems like the perfect thing to do in Jane's memory. It does not matter at all that I have never run further than the corner shop and even that was a corner shop I could see from my window.  But 5km surely is a piece of cake, right?

I had some nice t-shirts made with Jane's picture on it and her famous Salmony Goodness on the front. For those of you who don't know what I am talking about, here is the origin of Salmony Goodness.

I was running with Jane's friend Kate. The day started of well with the rain absolutely hammering down. Great. As if Jane was saying: You are INSANE for doing this.

I won't bore you with the details but I ran/walked/ran/walked/ran the 5km in 40 minutes. Faster than I have ever ran 5km before. In fact, I have never run 5km before so I claim that as a personal best.  The weather cleared up a little and although 5km is nothing in the grand scheme of things, I *might* have felt a little lump in my throat when I crossed the finish line together with Kate. Her fiancĂ©e failed to take a picture of us crossing the line so here is one from right afterwards.

I never thought I would do anything like this. I hate running (I may have mentioned this already). But also, I used to see all these woman on the TV, wearing t-shirts that said they were running in memory of a particular person. I just never imagined I would one day be one of them. Especially not at 35. In the end, I raised around £300. Not bad I think.

Future fundraising

Now for future fundraising efforts, I have decided to focus mainly on raising funds for the Cynthia Spencer Hospice in Northampton. They were absolutely fantastic not once but twice when they cared for Jane in October 2010 and again at the end of her life in May 2011.  Although the hospice is NHS funded, they need a lot of help from their charity to fund additional nurses to make sure patients get as much time and attention from trained staff as they need.  The fundraising will be a mixture of things I will be doing in the future. Not sure what the things will be but even if you just want to donate without me having to do something ridiculous, I would be very grateful. You can find my fundraising page for the Cynthia Spencer Hospice Charitable Trust at http://www.justgiving.com/Bouncybean.

14 July 2011

The Dash by Linda Ellis

At Jane's funeral, two of her school friends wanted to read the following poem, The Dash by Linda Ellis. Unfortunately it was too long to be read as the service only was 30 minutes and the ladies also had a personal tribute to read. So instead, I printed it in the Order of Service.
I think it is a lovely poem with a nice sentiment. Much nicer than what is normally read at funerals, about how we should not cry for the dead as they live in our hearts blah blah blah. If I want to cry, I won't let a stupid poet tell me that is wrong!


UPDATE ON 7/3/2012
I had, like many, many websites, put the text of the poem here. The poem is available in many different places on the web. For example here, here, here, here, here and here. However, as you can see in the comments, the author of the poem was unhappy about the fact that I love her poem but find the commercialisation of the poem offputting. And just to show that even authors of deeply moving poems can be petty and over sensitive to criticism, I was served with a copyright infringement notice to remove the poem from this blog.

No problem. The poem is available in so many places on the internet, it really does not matter to me.

All she had to do was ask. I am all in favour of copyright laws. All she had to do was ask.


Now I like this poem. But it surely is not a lifestyle? Well, in true American style, of course it is. The Dash is now a book, a follow-up book, "an inspirational film" and various merchandise. The author's website is just awful. It manages to turn a nice poem into something that is clearly trying to extract money from people on the basis of a poem. (Ed: it appears that website is no longer under her control.... It is now a link dump for all kinds of ads. I doubt it is related to her)

Somehow I would rather not have known how a lovely poem is being turned into something garish.

A good start

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

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

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

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

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

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

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

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

I miss you, liefie.

12 July 2011

Poignant song

One word - Anouk

I close my eyes
And imagine you're here
Did it all seem so hopeless
Given the chance
I would ask
Forgive me
I didn't do a thing to make you stay
I didn't say a word to make you stay
If I would have known
Could I have tried to make it easier
But I didn't do a thing
Or say a word
One word

And I don't know why you're gone, now you're gone
No beautiful goodbye
You will never leave my mind
And it turns out to be so much different than our dreams
Now you're, you're a star in heaven

My thoughts unsaid
Stuck in my head
And it all feels so useless
Never forget to give all I have
Forgive me
I couldn't do a thing to make you stay
And I couldn't say a word to make you stay
If I could have known
Could I have tried to make it easier
But I couldn't do a thing
Or say a word
One word

And I don't know why you're gone, now you're gone
No beautiful goodbye
You will never leave my mind
And it turns out to be so much different than our dreams
Now you're, yeah you're a star in heaven

Still I don't know why you're gone, now you're gone
No beautiful goodbye
You will never leave my mind
And it turns out to be so much different than our dreams
Now you're, you're a star in heaven
You're a star in heaven now
You're a star in heaven
Yeah you're my star

It is a lovely song that reflects the guilt I feel for not having been able to 'save' Jane. I like it. Just a shame about the reference to heaven.

10 July 2011

Sponsor me in Jane's memory please!

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

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


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

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

Testing myself

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

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

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

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

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

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

How do you guys feel about that?

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

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

07 July 2011


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

Apparently not. 

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

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

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

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

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

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

November 2008: Jane is still referred to the Oncologist. He feels that based on the results of the PET scan, it is time for a course of radiotherapy. Tumour is inoperable due to location as it has infiltrated the Corpus Callosum and the Thalmus. Size is not discussed but how did it go from minimal change in January 2008, via 'no increase in size' in October to having invaded other parts of the brain? This suggest the tumour had already invaded these parts of the brain when they did surgery in 2005. But we were not told this then.
In the letter to the GP, the oncologist speaks of a diagnosis of a Malignant neoplasm. Malignant? He did not tell us that back then. The letter states that the tumour, albeit extensive, was still metabolically of low grade character. Huh? Is it malignant or low grade? And how did it suddenly become extensive?

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

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

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

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

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

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

No mention anymore of possible neurosurgery.

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

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

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


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

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

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

05 July 2011

More than a person

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

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

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

It won't work.

And so it is yet another thing you have lost.

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

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

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

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

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

04 July 2011

Today I wept


I finally broke down and wept uncontrollably today. 

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

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

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

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

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

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

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

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

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

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

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

I love you.

"No one ever told me grief felt so like fear" - C.S. Lewis

Without You

Without you

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

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

Empty, without you

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

Zonder jou

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

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

03 July 2011

A trip to Scotland

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

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

02 July 2011

Salmony Goodness - The Movie

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

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

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

Am I doing too well?

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

But still.

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

I feel SAD but not upset.

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

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

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

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

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

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

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

Perhaps I need some councelling to sort this out.