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?

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

Prolonging life

by Dutchcloggie

For months and months, JD has been on a high dose of steroids. These steroids reduce the swelling of healthy brain tissue around the tumour. The healthy brain gets irritated by the tumour and swells up, causing more pressure inside JD’s head.

Keeping the swelling down obviously reduces the chance of headaches. It also reduces the chance of the swelling putting pressure on vital parts of the brain, thereby preserving brain function as much as possible.

Ironically, the same steroids that made her life bearable are now making her death hard. Without the steroids, the pressure in the brain would be greater, thus more vital functions would be affected, possibly resulting in a quicker, more peaceful death.

So this morning the doctor and I agreed they were now probably prolonging JD’s life and thus doing more harm than good. So the dose has now been drastically reduced. If this results in severe headaches etc, we can simply increase the pain relief. Perhaps by letting nature run its course, we can limit JD’s suffering.

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.

14th Nov2008

More pain in the head

by Dutchcloggie

Aarrggghhh! I know it is JD’s pain and not mine and that I shouldn’t complain but my God how annoying is this tumour!! I feel so powerless and unable to do anything useful.

On Wednesday, JD had yet another headache. In fact, she had a headache for a few days (ever since her course of Dexamethasone, a steroid that helps to reduce swelling of the brain) was finished. On Wednesday, it turned in to a proper headache that left her rolling around the bed in pain. By the time I went to bed, she had been like that for hours. We had tried Paracetamol, Ibuprofen and Codeine tablets but nothing really helped against the pain. She was throwing up and it was just heartbreaking to see.

In the end, I picked up the phone and called NHS Direct, a telephone service where nurses and doctors from the National Health Service give people medical advice 24/7. The idea is that if people call that for minor cases, then they don’t need to go to the ER or doctor, saving money and time.

I rang them to find out if there was anything stronger I could get JD for the headache. We live 2 minutes away from the hospital so if the answer had been yes, I would have taken her to Accident & Emergency to get he medication but I did not want to take her there and then be told there was nothing they could do for her. After all, it really was just a headache.

The nurse on the phone was fantastic. She was friendly, helpful, caring and understood that I was anxious to get SOMETHING, anything, to help JD feel better. She decided it would be best for a doctor to call me back to discuss it. And so I gave my phone number and within 15 minutes, a doctor called me back. He said he would like to see JD at the hospital. So I bundled her in the car for the 2 minute ride and off we went.

The doctor was friendly and managed to make me feel smug too! He said it was rare to meet a patient with a partner who knew every single detail of the treatment (I know all dates, medications, dosages and whatever else you can know about JD’s condition). This surprised me because I would have thought everyone wold know all details about your partner’s illness.

Anyway, he looked at her and offered her to be admitted overnight (it was already 1.30am by then) so that they could give her stronger pain killers. The other alternative was to give her a new course of Dexamethasone right away as that would immediately start reducing the swelling of her brain and thus take away some of the pressure inside her head. JD chose to go home instead with the tablets.

They seemed to help because she finally managed to fall asleep around 3am. In the morning, we went to the GP who gave her a new course of Dexamethasone for the next 25 days.

It is now Friday and the headaches are still there. On a scale of 1 to 10, she rates it as 7 or 8 today. That sucks. That really sucks. I hate the fucking tumour. It may not even be related to that bloody thing. She might just have developed migraines. Now that would be really shitty.

JD was supposed to go to Germany with the fencing team for a tournament. She’s at home now, deciding the headaches were too severe.

Oh, and to top it off, the boiler is broken and we have no heating & no hot water.

23rd Oct2008

It’s back

by Dutchcloggie

I realise I have not posted anything interesting here in..well….weeks (months?). Not that things have been really busy. Just that I haven’t been bothered posting.

However, I suppose things have changed now and I might get back to some more regular posting here.

As you may remember, in February this year, JD and I were told that her brain tumour is active again. The specialist said there was an absolute minute change in the size of the tumour. Nothing to worry about and the scan would be repeated in 12 months time, no need to worry. Sure. Of course you worry; even when the doctor says you shouldn’t.

Most people imagine a tumour as a well defined lump (See the picture on the right as random example) but Jane’s tumour isn’t like that. It is more like little bits of tumour tissue, growing in between healthy brain tissue in a small area of her brain. The healthy tissue gets irritated by the tumour tissue and it starts to swell up, putting pressure on the brain since there is no space in the skull for tissue to swell up. So on the MRI scan, you don’t see a nice clear lump, but a vague grey area where there is tumour tissue in the brain (see the picture on the left as a random example). This makes it really hard to remove as you don’t really know which bits are tumour and which bits are healthy tissue that is swollen. It all looks the same. When they originally removed the tumour, in 2005, they were unable to determine exactly what kind of tumour it was. They were also not able to remove all of it as the ‘edges’ were not very well defined.

In the months that followed February, JD kept having headaches. There were periods where she had them every day for weeks. In September JD had a migraine attack, something she had never had before. It was really scary as we had no idea what was going on. Vomiting, excruciating headaches for about 8 hours. Combined with her hearing problems that had recently surfaced, we decided that we would really like an MRI scan done earlier than February 2009. We went to her GP and luckily he agreed that she should be seen by a Neurosurgeon.

The Neuro bloke was really nice and ordered an emergency MRI scan for the next week. When the results came back, they were not really what we were hoping for. The tumour was indeed growing and active, more so than they anticipated back in February. JD was put on steroid tablets to reduce the swelling of healthy brain tissue around the tumour that was irritated by the presence of the tumour. This helped reduce the headaches.

The last MRI scan showed that the grey area on the picture had grown larger and that there was now also a second area that showed up grey. Does that mean the tumour is spreading? Or that there is simply more brain swelling going on? They can’t tell from the MRI. So they wanted to do a PET scan and based on the outcome of that, do a biopsy to see if they can finally decide what kind of tumour it is. And then he said the words Chemotherapy and Radiation. Excuse me? Can you repeat that for me? Chemotherapy? Radiation? That is for people with CANCER! The doctor said there was no real need to treat the tumour but because JD is so young, he preferred to treat it now, before it might start to grow faster or even change in to a malignant tumour.

We left the hospital shell-shocked. From having a migraine to being told your tumour is indeed growing and you might need Chemo and Radiation…. Geeeeez.

And so JD had her PET scan last week; she had another blazing migraine that same day so she was ill all the way to the hospital and back. Poor sweetie. A PET scan looks are brain function. The contrast fluid lights up differently depending on the activity in the brain. Hopefully that will enable them to see the difference in brain activity in tumour tissue and normal brain tissue. That way they might be able to get a clearer picture of where to take biopsy samples from.

It is wait and see what the results of the PET scan say.

It is a small difference in emotions but somehow I feel things have shifted for JD. From ‘having a brain tumour’ to ‘living with a brain tumour’. If you have no symptoms, then the tumour might as well not be there. Now she has headaches and ‘proper’ symptoms, it just feels different.

Yegh. I am not liking it. I prefer to know exactly what tumour it is, what the prognosis for it is and how much this is going to affect the rest of her life. All this uncertainty is no fun. Very stressful!

04th Oct2008

To the Clinical Oncologist

by Dutchcloggie

There are moments when I just don’t know what to think. JD had her PET scan 2 weeks ago to learn more about her tumour. We have not heard anything about a report or result of the scan. However, yesterday we got a letter saying an appointment has been made with the Clinical Oncologist in 2 weeks’ time.

What does that mean in relation to the PET scan? That they have decided treatment is the way forward? A Clinical Oncologist treats cancer with chemotherapy and radiation so I assume JD is not just going for a nice chat but to actually discuss some form of treatment. It would be nice to have had a call or letter from the doctor, explaining the result of the PET scan and what the next steps are going to be. Now we are just assuming we know what will happen.

I am angry as I want to know what to feel. JD seems to be afraid of the whole brain, cancer, tumour, dying thing. I am not (yet?) too scared about the tumour itself as I trust the doctor when he said it is still quite small but that he simply likes to get rid of it before it can maybe cause trouble in the future. Me, I am just scared about the treatment JD will get. Radiation? Chemotherapy? It just brings up pictures of really sick people. I don’t want JD to feel like a piece of crap. I don’t want to have to see my wife in pain and discomfort. I feel bad enough when she has a headache.

It is important that we keep talking to each other. JD has a tendency to try and make things go away by ignoring them for a while. I on the other hand feel a need to know as much as possible about what is going on so that I can ‘decide’ on how I feel. That sounds calculated but I mean that for me it is important to be able to put things in some kind of perspective. Is this tumour one of those that kills people in a few years? Is it one that is just a nuisance but which can be ‘controlled’ with treatment or surgery, even if it can not be removed completely? How scared should I be, how life shattering is this tumour? I feel like I am dangling in space with nothing to hold on to for security. There is no frame of reference to use as a yardstick.

Maybe it has to do with a need to be in control. I am sure a psychologist will have a theory about it.

27th Feb2008

I feel the earth move

by Dutchcloggie

Funny how things take on a different meaning sometimes. Last night, England was shaking with an earthquake that measured 5.3 on the Richter scale. I have never felt an earthquake before and I was out of bed in a flash (I am talking within 2 seconds, upright, out of bed and wide awake). I don’t like quakes when living on the top floor in a flat.

Anyway, in a week of earth shattering events, the quake last night seemed somehow appropriate.

JD’s father died on Saturday night after having been ill on and off for the past few months.

Yesterday, we were told by the neurosurgeon that JD’s brain scan has thrown up some questions about the tumour perhaps, slightly, maybe, changing size. He said it was almost negligible and nothing to worry about but in an already emotional week, we just wanted to hear him say: “We looked at your MRI scan and there is nothing to see. See you for another check up in a year. Goodbye.” We did not want to hear him say that he will discuss the scan with his colleagues and see if they need to do a biopsy. Basically, one of the doctors says he has noticed a tiny difference between the latest scans and the ones done last year. JD’s own neurosurgeon says he can not see any difference hence it will need to be discussed with other doctors. It may not be much, but it is still not the same as “No change”.

Damn. It breaks my heart to see JD so sad. I would prefer it if she just cried all day or something. A clear emotion. But she is just quiet and sad. I wish I could make it all go away.

27th Apr2005

It’s a brain tumour

by Dutchcloggie

“Yes it is a tumour and I think it is best to remove it as soon as possible. How about 19th of May?”

JD’s best argument against that was that she will be in the middle of her final exams by then and I can understand that if you need brain surgery at the end of your university career, you want it after the exams so your obituary can say: “J.D. Bsc. Maths & Business”

So it is now the first Monday after the last exam. Great. I am sure that will enhance her concentration. Not.

We had come prepared. Over the weekend we had drawn up a list of questions, ranging from “Am I going to die?” to “Can I still go on the rides at Alton Towers?” You know, the important things in life. (Mind you, for the moment the answer is no to both questions). The doctor threw around some words we did not understand but the nurse was nice enough to translate for us. It is a tumour. It is at the front of the brain. It is in a very accessible spot. We don’t know if it is malignant but probably not. We might as well remove it as soon as we can even though it is slow growing one from what we can see on the scans.

OK. So as far as tumours go, this is not a bad one to have? Not sure. No matter how accessible it is, it is still brain surgery and it is still a brain tumour.

“You will get a letter home with a definite date. Here is a phone number you can call if you have more questions and here is the number for CancerBACKUP. They can help people with cancer with loads of information.”

Hang on, hang on. Cancer? Nobody mentioned that word before. Cancer=bad=death. Brain tumour=bad=death. So cancer+brain tumour=certain death? Apparently it is not that simple but brain tumours fall under the Cancer Banner. Hmm…right.

So what now? JD needs a will. And a Living will. I need to be recognised as Next of Kin (I really do not want to get into a fight with her parents over this if the moment we all fear arrives. I rather have it sorted out now and be clear on it). We need to organise a big BBQ the Saturday before the surgery for all her friends. We need to see if we can get married in England somehow. We were going to get married in The Netherlands at some stage but since JD has been advised not to travel in case of seizures, we are looking at maybe getting married at the Dutch Embassy if that is possible. It wouldn’t have any legal status here in the UK but it is still something we want to look at.

And in the mean time, JD is trying to study for her finals. As if that is going to happen. At least the people at University are being really good to her. Offering support and all sorts of things (Allowing her to do the exams in a separate room to help her concentrate etc.).
We have to be careful to not make it worse than it is. Because the tumour itself is apparently not dangerous (yet) as it is most likely benign, slow growing and in a very easy spot to remove. But it is still brain surgery. It still involves removing the skin from her forehead, cutting a hole in her skull, removing brain tissue and putting it all back again. It still involves the risk of taking out too much, which means damage to her emotional functions. It is still major surgery under complete anaesthetics. She may need radiotherapy afterwards, depending on how much tumour they were able to remove and if it is malignant or not.

And she will need MRI scans every 6 months for the rest of her life to check the tumour is not growing back.

It is unfair. I am angry and sad. For her. She is only 21. She shouldn’t have to be worrying about these things.

Looking back, getting concussion during a rugby match was a blessing in disguise. Because after that she had a scan and it showed the tumour. We might not have known for a long time if she had not had that scan. So I guess in a way it was all a good thing.

I am scared. I know it is OK to be scared. JD is scared too. My parents are scared. I am sure her parents are scared although their emotional communication leaves something to be desired.

This post is too long. Prepare for a lot more long posts. Anyone who wants to come to JD’s BBQ, you are welcome if you bring your own beer!

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