22nd Oct2011

Jane’s last holiday

by Dutchcloggie

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

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

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

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

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.

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.

11th Dec2008

Don’t ask, don’t tell

by Dutchcloggie

JD has, according to the Oncologist, a high likelihood of her tumour being a Grade II Astrocytoma. Inoperable because it has invaded the Corpus Callosum and there are signs of invasion of the Thalamus. This sounds really scary when they say words like ‘invaded’ and ‘inoperable’ but how bad is that really when it comes to daily life? I mean, the smallest sign of tumour is considered ‘invasion’ but that does not mean it is aggressively invading and growing, like an ivy plant growing up against the wall and eventually invading the wall of your house, pushing the bricks and mortar apart to get in.

RT starts in January and the Oncologist said: This will work. But will work for what? To stop the tumour growing further? For a while or for good? Is it a 99 certainty with these tumours that they will grow back eventually?

I kind of want to know if, in the end, this is going to be fatal. Even if it is in 10 or 15 years. I just do not want to have the idea that this can be cured completely only to then find out in a few years time that I was wrong in that belief. I know that it can be years after treatment before it comes back but none of the doctors have said anything about long term prognosis.

I wonder if long-term prognosis is a case of Don’t Ask, Don’t Tell. If we don’t ask them abut it, why should they say: “You do realise this will kill you in, on average, 15 years” for example.

Somehow I don’t want to know if this is fatal in the short term but I do want to know if, in the long term, this will be fatal.

Every time I think: if only I knew the answer to –insert question here–, I will feel better about things, more in control. And then we get the answer an a new question comes up and I think: If only I knew the answer to THIS question, I would have a better idea of how to handle this.

27th Nov2008

Doctor Lecter comes to town

by Dutchcloggie


Yesterday JD went to hospital to have her mask fitted for the Radiotherapy. I took pictures, much to the amazement of the technicians. Well, I need to be able to explain to my family what is going on right?

Anyway, JD was positioned on a table and then they quickly placed some warm plastic mesh on her face which was then shaped and molded to fit her face. After about 5 minutes, the plastic was hard and taa-daa: a perfect cast of her face.

She was then taken for a CT scan with the mask on. That way, the Oncologist can map exactly the position of the tumour in relation to the mask. (Read more information about this on the website of Cancerbackup.org). He will put all the different scans (MRI, CT, PET) on top of each other to pinpoint the exact location of the tumour and then he marks out on the mask where exactly the radiation beams will need to be aimed during the radiotherapy treatment. Next month JD will go for a trial scan to check the oncologist has measured everything correctly.

The real thing then starts on January 5th.

The appointment itself wasn’t anything much. Quite technical. The oncologist answered some more of our questions and JD was pleased to report that the increased dose of steroids seems to be working well and her double vision and headaches have been reduced greatly.

Afterwards JD said that the whole experience left her feeling ‘cancery’. I suppose it hits home that this is cancer treatment. She said she has so far not seen herself as a cancer patient at all. Neither have I. I know a brain tumour is brain cancer but somehow it feels like a separate thing. Being surrounded by leaflets and brochures from the (excellent) MacMillan cancer charity makes you realise that in fact, it is a form of cancer.

It is all a bit strange because JD is not really feeling ill at all, especially with the steroids now controlling the swelling of the brain. In fact, the radiotherapy will make her more ill than the tumour ever has so far.

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.

04th Nov2008

I changed my mind

by Dutchcloggie

I’m scared.

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!

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.

24th Jun2005

Reezult!

by Dutchcloggie

A post by JD

Yesterday could have been one of the worst days in the year. But it passed without any major problems. I got a 2.1 which is what I wanted and which is plenty to see me into my MSc.

The biopsy results were slightly useless in that they couldn’t determine the type of tumour but that they could say that it wasn’t high grade (malignant). The consultant told me after surgery that he was pretty sure it was benign but it is still nice to have that confirmed. So no further treatment for me. Except for anti-convulsants for the rest of my life as they don’t know the exact tumour type. Yay!

So life continues as normal for now. There is a possibility that it could change into a malignant tumour but there’s no point worrying about that. I’m just getting on with life.

13th Jun2005

Home

by Dutchcloggie

Post from JD

Hi everyone. I’m at home and have been since Thursday afternoon. Naturally it has taken me ages to get round to blogging but I have been even more restrained than normal as too much time at the computer would be bad.

I’m feeling really good at the moment. So much better than I thought I would. I’m still taking a raft of drugs but my dosage is reduced all the time.

Thank you for all of your kind words of support for myself and Marieke. I’ll write more after I have the staples out today. Wuhoo!

08th Jun2005

Tumour diary – Day 3 Going home tomorrow!

by Dutchcloggie

Today was a good day. In fact, today was a perfect day. JD was feeling much better and walked around. Her face is a little bit bloated from the bruising but nothing major. We went for a walk around the hospital and when I arrived for visiting hour this evening, she was all happy because the doctor has told her she can go home tomorrow!!

Can you believe it? they hack a piece out of her brain on Monday afternoon and she gets sent home on Thursday? Of course we are totally and utterly happy that everything has gone so extremely well. I don’t know if they made it all sound horrible at the start so that it would all look much better and easier once it was all actually happening. Or maybe JD is indeed recovering extremely quickly.

Either way, the next step is waiting for the results of the biopsy. But tomorrow is a nice day for the two of us. I got champagne, roses, a clean bed, tidy house, croissants for in the morning….did I forget anything?

07th Jun2005

Tumour diary – Day 2 Afternoon

by Dutchcloggie

I am home for a short while to get some laundry done, have some food and get JD some clean clothes.

Nothing has changed since this morning so it is all still very good. Nothing has changed. Apart from me having read the letter she left under our bed in case something would go wrong during the operation.

Nothing has changed since this morning. Apart from me having gone from a composed partner to a teary mess, sitting at home with a letter in my hand, crying my eyes out.

In the envelope was a letter and another envelope. I have not opened that yet. And I don’t think I will. I will ask JD to open it for me this afternoon. If she does not want me to open it, she can throw it away. Or keep it safe for when it is needed. She told me I could read the letter so I did. If she had told me I couldn’t I wouldn’t have read it.

Just the thought of her not surviving. “Perhaps you can hear my voice or see me standing next to you when you read this…”. I pictured myself reading the letter after her death or after something really wrong had happened. And I just cried and cried and cried. Like I am when I am typing this now.

I would be absolutely destroyed if something ever happened to her. I am nothing without her.

Can we please never have to do this again. Please. Pretty please.

Thank you.

07th Jun2005

Tumour diary – Day 2 Good morning

by Dutchcloggie

JD has had a nice and quiet night sleep. That is according to the night nurse. According to JD herself she had a reasonable night sleep with headache and interruptions. She seems quiet this morning but fully awake and talking. She had breakfast and some bananas. She asked her mother for a digital camera so she can see what she looks like in hospital.

I am feeling ok but of course i am anxious about any possible changes in her personality or behaviour that may have come from the tumor or the surgery. I have to learn to ignore it every time i think: would she have been like this before the surgery as well or is this different? We will be ok i am sure. I love her to bits even with her newly acquired comb-over.

06th Jun2005

Tumour diary – Day 1 She’s fine

by Dutchcloggie

A quick mobile blog to let you all know jane has had the surgery. It all went fine and she is looking really good. No bruises in her face yet and they did not have to shave her entire head either.

06th Jun2005

Tumour diary – Day 1 She’s in

by Dutchcloggie

Getting ready for surgery

Do I care if anyone reads this? Not really. Just makes me feel better to write something, no matter how short.
I took JD to the hospital yesterday afternoon. We were reasonably cheerful until JD was appointed her bed. Right opposite a little old lady with her head in a full-on metal frame. Obviously she had some kind of spinal reconstruction done on her. Just not a cheerful sight. JD’s mood changed instantly. It obviously started to dawn on her this was all really happening. My heart just melted when she sat there in that chair that seemed to grow bigger every second.

The nurses seem nice so that is good. We just waited around and did a Sudoku. We found even the easy one to be excruciatingly hard on a day like yesterday. Surgery is today (Monday) at 1pm so remember to send your positive thoughts. You can pray if you like. it is nice to know that even though we are not religious, people take the time to pray for us and ask their God, who they feel is all powerful, for help in JD’s name. Thanks guys.

JD on the morning of her surgery

JD on the morning of her surgery

I am about to go to the hospital to say good morning (If the nurses will tolerate me outside visiting hours of course) and then during surgery, I am not sure yet what I will do. Wait in the hospital for 4 hours? Or go for lunch with my parents who have set up camp on a campsite near the hospital? Don’t know yet.

Risks of the surgery include seizures, aneurisms, hemorrhages etc. Nice thought. They can not remove the tumour completely so they will try as much as they can and the rest will have to be treated by monitoring it and operating again if it grows again in a year’s time or so. Or they give her radiation. But that can turn benign cells into malignant cells so they are not too keen on that unless it is the only option.

I love her so much. It is unfair.

Pages:12»