Use it for something good

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. Eventhough 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 hellp, right?

More pain in the head

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.

Blow Wind Blow

Earlier this week, a big storm was raging over Northampton. Normally I love storms but not this time. You see, this time, it turns out one of the windows wasn't closed properly and when the wind yanked it open at 1.34am, I thought the wind had actually blown the window off completely! The noise it made was terrible! The blinds wee blowing, stuff fell off the windowsill (but luckily not the vase with roses!). I jumped out of bed, thinking a disaster had happened!

That'll teach JD to close windows properly next time!

A little less scared

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.

Do you tell?

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'?

I changed my mind

I am scared.

To the Clinical Oncologist

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.

Welsh road sign used as Out of office notice.

This sign is easily the funniest thing I have seen in a long time. JD & I laughed our heads off when we read the following story on the BBC website.

All official road signs in Wales are bilingual, so the local authority e-mailed its in-house translation service for the Welsh version of: "No entry for heavy goods vehicles. Residential site only".

The reply duly came back and officials set the wheels in motion to create the large sign in both languages.

Unfortunately, the e-mail response to Swansea council said in Welsh: "I am not in the office at the moment. Please send any work to be translated".

So that was what went up under the English version which barred lorries from a road near a supermarket.

The whole story is here.

If Wales is bilingual, why was the email out of office not in English and Welsh?

Yodeling

For a reason I do not yet understand, I yodeled on the bus home from a rugby match last Sunday. That sounds weirder than it is but they were singing 'The Lonely Goat Herd' from The Sound of Music and it has a little yodel in it.

"High on a hill was a lonely goatherd
Lay ee odl lay ee odl lay hee hoo
Loud was the voice of the lonely goatherd
Lay ee odl lay ee odl-oo"


And when they got to that part, I yodeled it. Much to the enjoyment of the rest of the team. They made me yodel some more (I only knew one song, thank God).

I thought everyone could make sounds like that but apparently not. they have now mentioned they will do The Sound of Music at the Christmas panto, just so that I can yodel in it. I think not.

However, I have been looking for another song I could learn to yodel, just so I don't have to sing the same silly song all the time. And then I came across Margo Smith, the Queen of Country yodeling. My lord, she's good. And strangely addictive to listen to.




But wait, it gets better. They yodel in Korea too! In full Austrian costume.



I have a LOT of practice to do before I am that good at it.

It is back...

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 shellshocked. 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!