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.

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.

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 Nov2008

I changed my mind

by Dutchcloggie

I’m scared.

05th Nov2008

Do you tell?

by Dutchcloggie

I have a really good relationship with my parents and sister. I tell them everything. They are fully aware of what is going on with JD and when she first had surgery, back in 2005, my parents canceled their planned holiday in Italy and came over to go camping in England instead to be near us during the surgery. (My parents live in The Netherlands, where I am from). So every time there is a minute new development with JD’s brain, my parents are usually the first to know. That is how they want it. I don’t really worry about what they do with the information I give them. With that, I mean that if they get really scared when I tell them we are due to visit the Oncologist, that is not my business. Not that I don’t care, but I mean, I do not withhold information from them just because they might get upset or take it the wrong way. They are responsible for how they deal with the information I give them. It is not up to me to judge if they are ‘fit’ to hear certain things or not.

JD however has never really been close to her parents. Her father died earlier this year and the relationship with her mother is a complicated one. In her family, the tradition is more: don’t tell unless there is an absolute need. So for example, she would be told after the event that her dad had been in hospital for a few days but that it was all OK now.

It seems JD is now taking the same approach with her mother. I had to almost twist her arm to even get her to tell her mother that the latest MRI showed growth and she has not told her mother that she will see the Oncologist this month. She just told her that she had a follow up appointment to discuss the results of the PET scan.

This is something I don’t understand. Surely it means that if JD needs chemo or radiation, this will be a major shock to her family since they have no idea what is actually going on. JD says: well, we KNOW nothing so it would just upset them to give them half a story. She may have a point there. My family know everything, even though we really know nothing. So they are just as uncertain and scared as we are. But in my mind, this means at least they are prepared if the news is going to be bad. If you don’t know how serious it is, the news that someone might need chemo or radiation will be even harder to take, right?

Sometimes we argue about this. I think communication is absolute key. JD feels she does not want to deal with her mother being upset over something we don’t know much about yet and so prefers to say as little as she can get away with. I can rationally see her point but it feels totally alien to me to keep information from my parents.

So, how do you guys handle this? Is it better to keep people informed, as some kind of running commentary, even if the news is tiny or unclear? Or is it better to just limit the information to things you know for sure so as to not upset people too much? Are we ever responsible for how our loved ones respond to the news? Or do we owe them ‘full disclosure’?

06th Nov2008

A little less scared

by Dutchcloggie

I just spoke to the ‘Cancer Nurse’ from the hospital about JD having to see the oncologist. (I lied and said I WAS JD or else they wouldn’t speak to me. I am so naughty:-) He had her file in front of him and said: “You only have to see the oncologist because the PET scan was ordered through his office. It does not indicate any kind of treatment is required. it may be but, looking at her files, the PET showed it is still a low-grade glioma with very little growth. Chances are he only wants to discuss possible treatment options for the future and check you with more frequent PET scans than has so far been the case. That is good news”

Wow. I guess that is good news indeed. Can someone please tell the hospital that just sending appointments to see Oncologists is really scary if you don’t know why you are supposed to be seeing an oncologist?????

Anyway, long live the Cancer Backup nurse! Feeling a lot less scared about the appointment now.

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.

14th Nov2008

Use it for something good

by Dutchcloggie

Today I did a naughty thing. Our boiler broke down last night. No shower, no hot water, no washing machine & no washing up. With JD at home all day with her head hurting, I really don’t want to be without hot water too long.

I rang the letting agency and said: I have a sick person at home so I would appreciate a fast solution. She sent someone around right away and he said he needed to contact the landlord to get permission to fix the circuit board in the boiler.

So of course this took ages to solve as landlords are always very reluctant to spend money. In the end, I got so pissed off that I rang the letting agency again and said: look, I have someone with a brain tumour at home, in bed. She needs to stay warm and comfortable, OK. I am not having any of this delay.

Poor lady of the letting agency was shocked, apologised many times and said she would chase up the landlord to get him to solve it as soon as possible. Bless her. She rang back real soon to explain it was not going to happen today but if JD was cold, we could borrow some of the office portable radiators? That was really nice of her. I politely declined as JD is not (yet) that cold.

Now I kind of feel bad that I ‘used’ JD’s tumour to get my boiler fixed faster. Even though every word I said to the lady was true, it does feel wrong somehow. But then again, I might as well use the f*cking thing to get a little bit of help, right?

21st Nov2008

Radiotherapy, here we go

by Dutchcloggie

So we went to see the Oncologist a few days ago. And the news wasn’t as nice as we had hoped. JD is now having prolonged episodes of double vision, headaches and some dizziness. The doctor felt it was time to start treating the tumour. They prefer waiting with this as long as possible because radiotherapy might actually make a benign low-grade tumour turn in to a malignant high-grade one. But it is a small risk. However, it is one we need to take.

And so next week, we go back to the hospital where JD will be measured and fitted with a facial mask. On that mask, they will mark the exact spots where the radiation beams will be entering her head.

The word Cancer was used properly for the first time. Brain cancer. Sounds terrible. The word ‘inoperable’ was used as well. The tumour is in a place where they cannot cut it away. Basically the tumour is not a single lump but lots of little bits of tumour in an area that controls important brain functions.

The radio therapy can not remove or shrink the tumour but it can stop the growth. That would mean the healthy brain around the tumour will no longer be swollen. That will mean no more headaches and no more double vision. It would mean a pretty normal life. People have survived for decades after having this treatment. But we also know others have died. Most low grade tumours turn in to high grade in the end. The question is: how long before that happens? Especially since we already know it is inoperable, we are really hoping this early intervention with radiation will work.

It is a 6 week course. For 6 weeks, 5 days a week, JD has to go to a hospital an hour driving away from where we live for a 30 minute treatment session. With her double vision, she won’t be able to drive herself. So that will have to be me. My boss will be happy about that. Not.

Thankfully, we have great friends and there is already an offer for JD to stay overnight with a friend who lives near the hospital. Even if we can arrange it so that she can stay over with different friends a few nights a week, then I can drive her on other days.

I am already upset when I think of JD feeling ill and being scared. Because initially, her symptoms will just get worse instead of better. She will lose hair where the beams hit her head, she’ll feel ill, dizzy, headaches, more double vision, loss of appetite, loss of memory and concentration, tired and so on. And that is apart from the additional side effects from all the medication she will be taking. Steroids, anti-seizure drugs, and so on.

This whole tumour is unacceptable. It is just not good enough. She is NOT going to die of this. Not now, not in 10 years, not in 25 years. I WILL not accept that.

Tumour, are you listening? Bring it on you bastard! We’re coming to get you.

25th Nov2008

Support in music

by Dutchcloggie

I have always liked “I Run for Life” by Melissa Etheridge. It is a song about her experiences after being diagnosed with breast cancer. The song has almost become a rallying cry for women around the world, giving them hope and a sense of community, to have a major singer singing about such an intimate experience is such an inspiring way.

As I said, I liked the song before all the brain-thing with JD. I admired Etheridge for recording it, I liked that a singer I have admired for years has managed to reach out to all women, lesbians or straight, and unite them behind a common cause. The song is about breast cancer and for that reason, I used to find it a touching song.

But these days, it makes me cry. It makes me want to sing it REALLY loud in my car on the way to and from work, with all the windows open so everyone can hear my anger. It makes me want to scream with rage, it makes me want to destroy the thing that is making JD ill. These days, it makes me very very very determined. And then I realise that there is no point in me feeling determined. Because what can I do to make it go away? Nothing. I can maybe make JD feel better about it. But there is nothing I can do to fight this. But maybe if I sing it one more time, it might go away then?

I Run for Life

(Melissa Etheridge)

It’s been years since they told her about it
The darkness her body possessed
And the scars are still there in the mirror
Everyday that she gets herself dressed
Though the pain is miles and miles behind her
And the fear is now a docile beast
If you ask her why she is still running
She’ll tell you it makes her complete

[Chorus:]
I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend:| I run for life

It’s a blur since they told me about it
How the darkness had taken it’s toll
And they cut into my skin and they cut into my body
But they will never get a piece of my soul
And now I’m still learning the lesson
To awake when I hear the call
And if you ask me why I am still running
I’ll tell you I run for us all

[Chorus:]
I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend:| I run for life

And someday if they tell you about it
If the darkness knocks on your door
Remember her remember me
We will be running as we have before
Running for answers
Running for more

I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend
I run for hope
I run to feel
I run for the truth
For all that is real
I run for your mother your sister your wife
I run for you and me my friend:| I run for life

I run for your mother your sister your daughter your wife
I run for you and me my friend:| I run for life

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.

09th Dec2008

Always alert (or scared?)

by Dutchcloggie

JD has been preparing for the radio therapy which will start on January 5th. On the 23rd of December, she’s having her final planning appointment an then we are ready to go.

She has been on quite a high dosage of Dexamethasone for a few weeks now (8mg twice a day) and she is having side effects such as indigestion, feeling weak in the muscles, having a huge appetite and so on. She is definitely getting more round in the face but I actually find it kind of cute. It is unfair that the drugs she needs to take to reduce the swelling in her head simultaneously increase appetite and reduce your strength to exercise.

JD has not had a seizure since the very first one that announced the arrival of the tumour, almost 4 years ago now. And yet, I always remain vigilant for signs. Any unexpected twitch or rolling of eyes puts me on high alert. I guess I am never completely relaxed since she got ill. Whenever she is in a different room and silent for a bit, I call out to see if she’s still OK. She always is of course but it just makes me feel better. I used to cycle to work but I don’t anymore, in case something happens to JD and I have to rush home. Small things like that just change your habits.

Last night I had a proper scare through. Or rather JD had a scare. She got up off the sofa to get the paper from the bedroom (about 6 metres away). When she had not returned after a minute, I called to see if she found the paper. No response. I called again. No response. Still too lazy to get off the sofa, I called again. Or rather, I yelled quite loudly. No response.

Now I was worried. I walked to the bedroom and found JD lying on her back on the bed with pupils so big you could hardly see any of the colour of her eyes. I asked her if she was OK but she just stared at the ceiling and did not say much. I asked her what was up and she slowly managed to form a sentence, telling me she was ‘just having a little rest’. Obviously that is rather weird as she was just going to get the paper from the bedroom and come back to the living room. I was really worried at that point and thought she was about to have a seizure. She had that weird, vacant stare and disoriented speech.
After 2 minutes, she sat up and said she was fine. The whole thing had felt like some kind of headrush to her but different. She said when she got to the bedroom, she suddenly felt really tired and decided to lie down on the bed and then it was all a bit vague for a minute or two.

Weird. A bit scary that is. It might have been a headrush, nothing more than that but combined with the suddenly massive pupils, I felt it was a bit freaky. Maybe it has nothing to do with her brain tumour. Maybe it has everything to do with it. But I hate how the thing just changes your life in small ways. How you are simply a little less relaxed every time something happens.

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.