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.

14th Aug2011

Helping the Hospice

by Dutchcloggie

Text BEAN83 £5 to 70070 Grieving is tedious. It has been a little more than 2 months since Jane died and it is getting harder every day. The first few weeks I was numb. Now I am beginning to feel again and what I am feeling is not fun.

It is extremely cruel that someone as smart as Jane found her ability to think and study affected by a brain tumour. Because of its location in the brain, it mainly affected her memory, personality, ability to process information and give feedback on things she was asked. Still, between her diagnosis in 2005 and her death, aged 27, in 2011, Jane got herself a BSc, an MSc and nearly a PhD from Warwick University.

I get huge comfort from doing things that are related to Jane. Be it writing a blog about her or looking through pictures. I want to use this in a positive way. So I am raising money for the Cynthia Spencer Hospice.

The Cynthia Spencer Hospice cared for Jane twice. In October 2010, whilst I moved us into a new flat that enabled Jane to stay at home until the end, the Hospice looked after Jane and sorted out symptom control. After she came home, we had 7 wonderful months together in which we made a few final trips. 
 
Then, when the end was close, Jane returned to Cynthia Spencer Hospice for her final 10 days. The staff are fantastic and made me feel so much better in the circumstances.

I have decided to back to university next year so that I can become a palliative care nurse and make sure others get the same fantastic care when they need it most.

You don’t have to do something so drastic. You can just give money!
 
The Cynthia Spencer Hospice is NHS-funded but they need additional money from charity to pay for extra nurses and other things the NHS does not pay for.
 
I am hoping to do a number of things to raise money for the hospice. Every penny helps so even if you just donate your small change to this, it would be brilliant.

Please visit my fundraising page at http://justgiving.com/Bouncybean.

Alternatively, get your mobile phone and text BEAN83 £5 to 70070 to donate £5. You can obviously change the amount to anything up to £10. To donate more than £10, or if you are donating from abroad, go to the JustGiving page.

17th Jun2011

Ashes to ashes

by Dutchcloggie

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

SJ scatters Jane's ashes at Warwick University

SJ scatters the first bit of Jane. Notice the M&S tea flask being used for this purpose.Unfortunately the ashes sank straight to the bottom of the lake so we decided on trying it again a little bit further out.

 

I transferred some of Jane’s ashes into a flask last night, ready to for today’s scattering. I created a rather large ash cloud of very fine bone ash. I think I may well have inhaled a substantial part of Jane in the process!

I scatter some of Jane's ashes

Graceful scattering of about half of Jane's ashes. We were interrupted by a guy who, even after we told him what we were doing, wanted to tell us about an orphaned goose that lives in the lake.

Walking across campus, I was suddenly struck by an immense sadness. This whole part of my life, Warwick University, is a part that only matters to me because of Jane. We had no shared ‘business’ there, although of course we have plenty of shared memories. I found it really difficult to explain to SJ that I really felt Warwick University would never again be part of making new memories with Jane. She said that I could talk about those memories with Jane’s friends so they would remain part of my life. But that is not what I meant.

I can not really explain it well but maybe it is something like this: In Leamington and Northampton, I was my own person, with my own things to do. And on top of that, we did things together. At Warwick University, I was always and ONLY Jane’s partner. I would only be there when Jane had some business at uni. When I picked her up. When I dropped her off. When I was meeting her for lunch. When I first met her there in 2003. When I came to see her friends.

So without Jane, there I felt completely lost. I felt rudderless. There was no reason for me to be there. And there will never again be a Jane-reason to be there, other than a reason related to her death (e.g. seeing her old friends, her old tutor, scattering her ashes etc). There will be no more new memories to make with Jane.

Even writing this now, I am crying. I don’t quite know why but it really upsets me that the thing that was such a massive part of Jane’s life, is somehow empty and meaningless to me without her there. It feels like another loss. Maybe because if I ever meet someone else, I might go camping with her. I might live together with her. I might do some of the things I used to do with Jane.
But I will never again walk along Warwick University campus with someone and feel that feeling of pride and belonging to someone who spent her entire academic life at a place she loved so deeply.

I guess it makes me feel incredibly sad that when I think about it, the thing that meant most to Jane in her life is something that now means precious little to me, since I have nothing to do with it anymore.

Jane Daniel's ashes in the lake at Warwick University

Jane's remains consist of very fine, dusty bone ash that floats on the water, and course, dense bone grit that sinks straight to the bottom. If you can find it, you'll find a little pile of Jane at the bottom of The Lake at Warwick University.

16th Jun2011

What is left

by Dutchcloggie

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

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

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

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

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

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

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

05th Jun2011

Goodbye

by Dutchcloggie

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

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

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

03rd Jun2011

One last look

by Dutchcloggie
Jane flying a kite in Cornwall

Jane flying our kite in Cornwall in July 2007

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

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

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

02nd Jun2011

In the end…

by Dutchcloggie

…it was peaceful. On Sunday morning, JD had trouble breathing and her skin turned a strange shade of blue, nearly purple. The nurses said this was a sign death was a mere hours away. JD’s mother came and went. And the waiting continued. Every once so often, JD’s breathing changed, became more shallow, more like snoring, then less like snoring. Her face returned to the normal pink colour, perhaps a little more grey than normal.

Our friends R&K arrived in the afternoon, all set up for the long wait. Ipads, beer, food, crisps. The hospice staff were fantastic in leaving us alone as much as possible whilst still checking JD was ok. As the day turned in to night, JD’s breathing changed a number of times. Looking back, I think she died a little every time that happened.

Around 10.30, I lifted JD’s left eyelid and saw her pupil had blown. And half an hour later, so did her right one. I knew she was no longer with us then. We held her hand, I crawled onto the bed and held her. And waited.

At 2am, R&K went home to sleep as JD’s breathing seemed very regular. I slept on the camping bed next to JD. The silence woke me up at 7. No sound of breathing. As I put my head on JD’s chest, I just caught her last few heartbeats. I got the nurses who confirmed JD was gone. Then they left me alone for a while and I cried. Relief. Pain. Anger. Sadness. Loss. Emptiness. Numbness. All of that.

They asked if I wanted to help wash JD but I felt unable to do that. I called JD’s mother, my parents and R&K came back to support me through the morning. It was all very calm & peaceful. I cried a bit more and we cleared out the room. After saying a final goodbye to JD, we went for a massive breakfast.

And so began my life as a widow.

Now what?

30th May2011

It’s done

by Dutchcloggie

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

29th May2011

Waiting for death

by Dutchcloggie

This morning, around 9.30, JD stopped breathing and turned purple. So I thought the end had come and I called the nurse. We sat with JD for 10 minutes, I cried. Then her breathing became regular again. And has been ever since.

Jane asleep in the hospice

Jane asleep in the hospice

It is now 3.50 in the afternoon. So a warning shot. Needless to say I have not left JD’s bedside since. Her mother came and left, having said her goodbyes and made her peace with anything that might still need peacemaking (sorry for crappy grammar). Then our friends K&R came along with ample supplies for the rest of the day, stating they were ready to stay as long as I want them.

And so we wait. I know there is not much time left. But how much or how little is a complete mystery. So it is a strange thing sitting here with friends, food for the evening, Ipads, books and crisps, waiting for death. Knowing JD, she will make us wait. And wait. And wait. Just because she can.

Just go, my angel. Just let go.

28th May2011

Waiting game

by Dutchcloggie

JD is no longer opening her eyes. Don’t know if she is asleep all the time or unconscious. This is the cruelest of waiting games.

I have lived in the hospice for more than a week now, unable to go home at night, just in case something happens. And of course, nothing happens. I put the folding bed next to JD every night. In the morning, I go home for a quick shower and breakfast. I am concerned the hospice staff will by now think I am weird and in their way. They say they don’t of course.

I have a sneaking suspicion JD will die as soon as I go away. Maybe I should leave for a night. That might encourage her to let go.

27th May2011

What’s in a name

by Dutchcloggie

JD is the Chief Warlock of the WizengamotToday JD is Chief Warlock of the Wizengamot. Yesterday she was Queen of the Borg. Before that, she was Minister for Magic and The Last of the Timelords.

At least it means people smile when they walk past or when they open the door. And a smile is always good.

26th May2011

As the end approaches

by Dutchcloggie

JD is now virtually unconscious/asleep all day. Her breathing is extremely shallow. It breaks my heart that we are basically waiting for her to die from dehydration. I asked the nurse about giving Jane extra morphine to speed up the process but because JD does not appear to be in much pain (or she is and can’t show in any way), they can not give her much as there needs to be a reason for giving her morphine, i.e. a nurse needs to verify JD needs it. Here is one situation where I wish there was a law on euthanasia (and no, I am not looking to start a discussion on that here, just saying that I personally just don’t see the point in having to watch Jane die of starvation & dehydration over a period of weeks when she could just go to sleep peacefully).

Anyway, I have really come to know our friends over the past few weeks. Having so many visitors is quite stressful as everyone wants some time alone with JD to say their goodbyes. Planning all that is not easy. However, it is absolutely wonderful to see how many people care deeply for JD. Some friendships have really grown stronger and although not everyone has been to visit, there isn’t anyone of JD’s friends who has faded away or not been in touch. Some of them needed some encouragement after my blog post of a few weeks ago, but they still came through in the end.

Yesterday, two of our friends, who are in a band together, sat at Jane’s bedside and, with a guitar, played a couple of Jane’s favourite songs for her. She blinked twice so I assume she heard it. It was wonderful. I had tears in my eyes. I recorded a video of it which I will treasure forever.

A friend sent me an extremely insightful article about hospice care versus keeping treatment going at all costs. It is a long article and American and also not specifically brain tumour related but it resonated with me in many ways. Especially when it comes to doctors almost actively avoiding raising the issue of perhaps ending treatment and just enjoying the last few months.

19th May2011

Deciding on the impossible

by Dutchcloggie

JD is in the hospice. After agonising over it for a few days, I decided I wanted to see if re-hydrating would make JD more comfortable. So she wemt to the hospice and spent yesterday on a drip. After a night of seizures, vomiting and bed wetting, I think the answer is clearly NO. Her body is strongly objecting to the fluids. By doing this, I have probably prolonged JD’s life by a few days (the fluids did make her more alert, even if also more uncomfortable) but also prolonged her suffering.

I sat down with the consultant (and a host of medical students) to discuss options. He understood how hard I found it to make decisions when everyone keeps saying that it needs to be good for both JD and for me. Since these two things are not always the same, that makes deciding almost impossible. The doctor was lovely and he asked me if I would prefer him to make the decisions in my place or would I like his opinion and decide myself? In the end, he gave his opinion on what he felt should happen and I said: then that is what we’ll do. And then I cried. Not just for JD, but because finally I made a decision with clear input and opinions,based on facts and experience, not just on emotions, hopes and wishes. This has been so lacking in the past few weeks where the responsibility was all mine. I made decisions based on gut feelings, rather than on experience or medical knowledge. This has meant I never felt sure about having done the right or wrong thing, something which has proved extremely stressful.

Decision was to stop all treatment, other than pain relief. So no fluids, no food etc. This is effectively the same as it was at home. But this time, I also decided to keep JD in the hospice. I know this is probably better for JD and me as I would most likely panic every time JD vomits or moans in the night. But I still feel like I failed her at the last minute.

So the waiting begins. Or rather, it continues. For as long as someone can live without fluids. This time, it really does feel like I can cross off the days.

Is it wrong to already be wondering which one of her friends would like to speak at the service?

18th May2011

Hospice

by Dutchcloggie

JD is in the hospice. Initially to try and give her some fluids but if I’m honest, I think we are already too late with that. Am already regretting the decision to take her there but after changing my mind a million times a day, I just could not face making yet another different decision.

21st Sep2010

Not so good

by Dutchcloggie

I have not posted here in a long while. But with good reason. Things are not going well with JD. Tumour is back and chemo no longer works. Doctor says it’s ‘a matter of months’ so God knows how long or short that is going to be.

After the appointment, I went to my boss and handed in my notice on the spot. I told him I would not come back. From now on, I will be JD’s full time carer.