Dutchcloggie's blog

Dutchcloggie

Although I am not at all a fan of internet self-diagnosis, I am afraid my wife is suffering from early/late delayed side effects of the radiotherapy she had for her low grade Astrocytoma. She finished 6 weeks ago and has received a radical dose for 30 treatments. She has all the symptoms...

* Early-delayed
o begin 1-12 weeks after completion of RT, peak by 8 weeks, resolve spontaneously within 4 months
o transient, self-limited neurologic deterioration, somnolence, or focal encephalopathy
o headache, lethargy, exacerbation of neurologic symptoms, decline in long-term memory

* Late-delayed
o neurobehavioral impairment
o lassitude, personality changes, urinary incontinence, gait abnormalities

Especially the lassitude is is putting a severe strain on our relationship. I have Attention Deficit Disorder and I am finding it almost impossible to find a way to deal with how she is at the moment. I am confused and angry when I don't want to be. I don't know how to help her, she is not really able to talk about it and I am just afraid I will end up just being annoyed all the time, instead of learning how to handle it. I don't understand how she can be so thoughtless & forgetful suddenly but it is, apparently, part of the symptoms. But how do you know that? How do you know she is not just a changed person?

Some kind of therapy, relationship therapy, whatever, anything to help us, me, her, to understand each other and the situation better.

The oncologist said it would take up to 6 months for her to back to full health again but I am afraid it might not get much better, especially since the changes seems to be so big. We are not seeing the oncologist again until June. Should I contact him sooner if this does not change? Or should I contact someone else? But who. Who can help?

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Dutchcloggie

The oncologist warned us that Jane wold be feeling the side effects of the radiotherapy for probably another 5 months. He said she would notice things such as tiredness, memory loss and somnolence. We nodded and pretended to understand. We thought somnolence was just related to sleeping. Well, it kind of is, but on many ways, it isn't. And I find it quite amazing that the oncologist did not explain properly what somnolence syndrome is and how devastating the effects can be if you do not know what is causing the symptoms.

Somnolence Syndrome is also the exact reason for JD being almost completely unable to remember to do stuff.

I can call her from work at 1.59pm to ask if she is going in to town (as she said she planned to do) and she'll say: I'm going after the 2pm news. Then, when I ring again at 3pm, she is still at home because she got side tracked and then forgot to go. In a single minute! I then have to stay on the phone as I tell her: if you still want to go in to town, get up now (I wait for her to get up) put your shoes on (I wait as she puts her shoes on), pack your bag (I wait as she packs her bag), take your phone and wallet and walk out the door (I wait until she has locked the door behind her). If I don't do this, she can be distracted at any stage of the process and end up doing something different altogether.

In the past few weeks this kind of behaviour has led to me being really angry at times and feeling really bad about that anger. More out of frustration as I just can not understand how you can forget something in the space of a second. It has also made JD upset. We both failed to grasp the full impact of Somnolence Syndrome. We did some research on it last night and we were both quite shocked.

The principal symptoms were those of excessive drowsiness, feeling clumsy, an inability to concentrate, lethargy, being mentally slow and fatigue. The unexplained and overwhelming nature of the symptoms was a cause of anxiety. Somnolence syndrome is a collection of symptoms consisting of drowsiness, lethargy and fatigue. Forewarning patients and planning supportive management around times of drowsiness and fatigue can help to reduce the anxiety that these symptoms cause. Source.

It explains a lot. I now feel more able to accept this behaviour. I feel more able to understand and deal with it. As long as JD does not mind me holding her hand, I will gladly guide her and help her keep her focus on simple stuff.

Dutchcloggie

I have had another good thought about my last post about jobs and tasks that JD 'has to do'. I think I have been totally unclear about things. So, here's my attempt to clarify things.

I do not set JD tasks around the house whilst I am at work. Her To Do List contains entirely of things that have nothing to do with me. They are things relating to her PhD project (small jobs to help her get started again after her time off for treatment), to her life (order medication, pay her credit card bills), to HER responsibilities she has voluntarily chosen to take on such as the fencing committee etc. They are not tasks I set her.

All these jobs are written down on Post-It notes that are stuck to the table. And every day, she just picks some of these that she will try to achieve on that day, no matter how big or small. If we do not write every little task down, she'll forget.

I love JD a lot and when I see the amount of things she has to do (some of her own choice, others simply things people have to do in life, such as financial admin etc), I am afraid she will drown in it and so I am trying to help her achieve as many of these tasks as possible by encouraging her and writing them down and going through the ones she wants to do for the day.

When I get upset about JD having so many tasks on the go, it is because I am afraid that JD feels like she is drowning in having taken on too many things. And that in turn upsets and frustrates me. I want to help JD stay on top of the things she has taken on so that she doesn't feel too overwhelmed. I am not annoyed or frustrated if she does not do stuff as such. I am upset because I am afraid she'll feel like she failed. And since I am not good at keeping emotions under control when it comes to my worries about JD, in a strange way, it then comes out in frustration directed at JD. As if she is not doing enough to make her own life easier. I can not make her own life easier for her as they are things SHE needs to do. And this kind of frustrates me because I would LOVE to take it al away from her and do all the jobs for her so she can clear her mind of responsibilities and feel relaxed and not pressured by all the things she needs to do.

I am not fussed about 'equal shares in household work'.
Yesterday for example, I cleaned the entire flat and cooked Sunday roast and JD spent the entire day doing the ironing. I was very happy at the end of the day as I felt we had achieved a lot together. House clean, ironing done, food cooked. All ready to start a new week. It doesn't matter to me that I may have done a lot more work because I know the ironing was a big effort for JD.

It is not about what is achieved, it is about the willingness to put effort in. So if all the effort yields only a small result, I am not upset and the failure to finish the task, I am happy as long as the effort has been made. Does that make sense?

I hope this sheds some light on what I actually mean. That I am not unreasonably asking JD to do lots of things and that I am not annoyed with her for not 'making my life easier. I am really quite a nice person :-)

Dutchcloggie

It is now 2 weeks since JD finished her 6 week course of radiotherapy to the Astrocytoma in her right anterial frontal lobe.
We were expecting side effects to slowly go away. Instead it seems things have just gotten worse. Maybe it is related to her being weened off the steroids at the moment? She was on a really high doses of Dexamethasons (16mg per day) and so weening her off will take until the end of May!

JD never really experienced the tiredness we were warned about at the start of the treatment. So that was a good thing. Even now, although still easily tired, it is still nothing like the tiredness we were expecting. So that is good.There are some headaches now but that can be related to the reduction in Dexamethasone.

The thing that worries us a bit though is the increased confusion, lack of concentration and inability to remember things.

JD has apparently had a rather radical dose of radiation, to make sure the tumour dies a proper death and it seems that she is now starting to suffer from late-side effects.

Doing more than one thing at the time is more difficult than before. If people tell her something that consists of multiple bits of information, she has trouble remembering all of he bits as well as with putting it all together in to a comprehensive story when asked to recount the situation.

For someone who was working on a PhD before treatment started, this is hard to take. She is trying to get back into studying again but we have to write everything down on Post-It notes or she'll forget. Now having 15 Post-It notes makes her feel so despondent that she struggles with getting going with even the simplest of the outstanding tasks.

For me personally, it is just frustrating. In more ways than one. I am not a patient person so I will frequently lose patience with JD when she has once again managed to do only 1 small task in an entire day. This upset JD but also upsets me because I feel bad for not being more patient and understanding. I mean, how much is reasonable to expect of someone? Some days I get really annoyed that she has not done things I asked her to do. Or I find out she only told me half of something important. And then I really struggle with not being angry and annoyed. Most of the time I fail and make JD feel liek she failed.

I want to help but it is hard not to be patronising or treat her like a child ("Do you think you can do 2 of your 15 tasks today? Let's try to get 2 done and if you can do more that is great. And then tomorrow maybe another 2...."). However, she does want me to help her organise things. But does that mean it is OK for me to call her at lunchtime to see how she is doing and to gently remind her that she is supposed to try and get her 2 jobs of the day done? Is that too much like a parent, rather than a wife?

How do you know someone is 'just being lazy and unmotivated' like we all can be some days when we just cannot be bothered. How do you tell the difference from smoeone who says they have really tried but they were just distracted by the TV, the radio, the internet and whatever else distracted them?

Are JD's symptoms normal? How long will they last? Will it be permanent? How long before she can really be asked to take responsibility again for putting her life back on track by returning to her studies etc?

In many ways, we thought the treatment was the hardest part and that things would get better now. But right now, it seems that this is the most difficult part of it. This is the part where communicaiton is the most important thing or else a relationship can really suffer.

Dutchcloggie

This weekend, JD finally plucked up the courage to have her hair cut off. It was a difficult decision that had been put off a few times already so I am proud she finally went. I think it looks a lot better now. Somehow, the long hair made her look more ill, in my opinion. Obviously, with half a head of hair, she still looks like she is obviously having some kind of problem but it somehow looks much better to me. And I love running my hands through short hair. There still are a few wispy bits on her head at the front but most of it is gone. She has left the hair on the back of her head, if anything because it is actually quite cold without hair! So tip from the top: don't have chemo or radiotherapy in the winter if you are going to lose your hair! It is cold!

Only 8 treatments to go. So far JD is doing great. None of the terrible tiredness we were warned about, no terrible headaches or anything. I guess it is not surprising that JD isn't too tired because she doesn't really do much during the day. That is not a bad thing! I just mean that if you have a very busy life with work and kids, you are going to notice much more that you are unable to do certain things. But if, like JD, most of your time is spent at home anyway, working on the sofa on a laptop, you are not spending a lot of energy anyway so it is not going to feel like you are using a lot more energy to do the same things you always do. I suppose in this case, that is a good thing! Yay for working on the sofa!

The only thing is perhaps that she is more forgetful and finds it hard to organise more than 1 thing at the same time. But apparently that is quite common with RT to the head and that should go away a few weeks after the end of treatment.

I am looking forward to the end of this. I am looking forward to things getting back to normal again. My bosses have been great in the past few months & weeks, giving me all the time I need to get to hospital and whatever else I need. It has made me a lot more stressed as I don't want to let my bosses down after them being supportive but I also need to be able to put JD first without feeling I then MUST go back to work in the evening to finish work off all the time. After all, my bosses knew I would need time and they offered me that time.

I am looking forward to hearing the radiotherapy has worked and the bastard tumour has stopped growing for good.

Dutchcloggie

JD has now started to lose her hair properly. Pulling it out is as addictive as popping bubble wrap plastic!

We were told it would only fall out where the radiotherapy beam hits her head and where it leaves her head again but unfortunately this seems to be almost her entire head. Hairloss was expected but not that it would most likely be permanent.

The booklet we were given did mention that hairloss might well be permanent when a high dosis of radiotherapy was given but we did not know that JD is indeed getting a 'radical dosis'. Only found this out the other day when I asked the nurses where exactly the hairloss would be. They showed me with JD on the table and he facial mask in place, just before the treatment.

Once we left the room, I casually mentioned that I had read the hair loss could be permanent in some cases. Would this be the case with JD? When all 4 of the radiotherapy-staff nodded their heads at the same time, I realised things were a bit different than we had assumed. They said JD is on a radical dosis because she is young and healthy and she can take the physical hit. Good. They told me the radical dosis is not related to how 'bad' the tumour is. Good. But they did say to expect the hairloss to be more or less permanent. They told us: If you assume it will be forever, then it can only be better if there is some growth again later on. Rather than expecting it to grow back and then not seeing any new hair!

Hmmm....that puts the Wig Question in a different perspective I reckon.

Dutchcloggie

So, after J(P)D confessed she gets a guilty pleasure from watching How Clean Is Your House because it makes her feel good about her own housekeeping skills, I am wondering what do YOU like to watch that makes you feel better?

I don't mean Sex and the City. No, I mean, what do you watch that makes you feel better about yourself just because the people featured on the shows are, well, desperate. I know this is a risky subject but I think it would be hypocritical to say: Oh, I don't do that. Millions of people watch these reality shows and The X Factor so I can not be the only one who has to admit to getting a smug feeling about watching other people's failures. Also, watching these shows to make you feel better does not always imply a judgment on the people featured.

I'll go first as I have my flame-proof pants on. I like to watch Family Fat Surgeons on Discovery. I feel sorry for some of the people featured but a lot of them are self-confessed lazy people who just want a surgeon to do all the hard work for them. It makes me feel annoyed with them. Some of the people I feel sorry for as they really seem to be struggling. However, either way, I watch that show and think: I am thin and gorgeous. And I have family and friends who would never let it get that far.

I also like to watch Bailiffs. Not for the people who are genuinely in trouble but so that I can feel smug about those who can pay but simply think they are above the law and shouldn't have to. It makes me laugh when rich people don't pay their traffic fines or council tax because they think they can wiggle out of it.

Another favourite is those traffic shows where they show road users doing the stupidest things in their cars (overtaking on a hill, turn in front of oncoming traffic, reverse on the motorway when missing a junction etc.) and then being angry when they get stopped by the police. I will happily yell at the screen that they should be banned for life.

Having cancer to deal with gives you, in my opinion, the right to sometimes be politically incorrect and think: Well, at least I am not like THESE people....

Does it say something about my self esteem that I do not in any way, shape or form (pun intended) care to watch stuff like Trinny & Suzanna or Gok Wan?

Dutchcloggie

Had a strange conversation with JD that other day.Quite an emotion one for me as I failed to feel happy with the things I said. I felt guilty and a freak at the end of it. But JD is brilliant and said she understands. What was this about? Well, a rough outline is below.

I think I am doing OK with all this. Easy for me to deal with it as it is not my brain being affected. I think that once JD will start feeling really ill from the treatment, I will become more angry and emotional. At the moment, she's not really ill from it and so the treatment is just part of a routine, not so much part of an illness. But having to see her lose her hair or be sick with headaches and nausea will be hard for me to take.

It is hard to describe but this whole thing is feeling strangely 'exciting' to me. Not in a 'cool!' kind of way though. As I have the attention span of an nat, this whole thing is never boring and always requires me to be alert and pay attention to everything going on around me. It keeps me on my toes. Is that weird? I mean, when I was young and insecure in school, I used to wish for some kind of illness or injury (nothing too serious of course, something that required a plaster and some crutches for a few weeks. Don't laugh, I KNOW I am not the only one with such thoguhts when I was young.) that would mean my peers would have to be interested and nice to me. JD says she had the same. I guess this is punishment for ever thinking like that. And yet, in a strange sad way, it is kind of 'exciting' to see so many people interested in myself and JD. I know I don't need to be reminded that I am a nice person that people care about and yet, it makes me feel good that friends and family want to know how things are going. It also makes me smile that it is sometimes a useful thing to use when we want to get somethign done a bit sooner or with a little more sympathy (see my story about getting my boiler fixed last month....)

Is that sad and selfish? I don't mean it to sound like that and obviously I do not mean that it is cool. I guess you can compare this 'excitement' with adrenaline: that flows both when you are having fun and when you are scared. I guess you can be 'excited' in anticipation of both good and bad things.

I guess I am not explaining it very well and I now sound like a freak.

Dutchcloggie

JD (or JPD as she is called here) has had 4 days of radio therapy so far and things seem to be going well. Except for this morning when they rang to say the machine is broken and there will be no treatment today. They are just going to stick one on at the end of the treatment to make sure she gets her 30 sessions.

How does that work? I mean, surely there is a 'rythm' to the treatment: 5 days on, 2 days rest and so on.

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?

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 vertainty 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.

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.

Dutchcloggie

Yesterday JD went to hospital to have her mask fitted for the Radiotherapy. Made her look a bit like Hannibal Lecter :-)

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. 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.

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

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. (Update: Since I typed this, my boss has said: whatever you need, however much time you want, just take it. Yay for small mercies!)

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 symptons 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 appatite, 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.

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. 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 help, right?

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.

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 optons 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.

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'?

Dutchcloggie

I am new to this site but the whole tumour thing has been going on since 2005 when my wife was diagnosed with some form of low grade brain tumour. They have never been able to determine what kind exactly but they debulked it as much as they could. No chemo or radiation. Since then, JD has been under regular check ups and MRI scans. In February this year, there were signs that the tumour was active again and this was confirmed in September when JD had her most recent MRI scan. They still don't know where to get a biopsy from as the tumour looks just like a vague grey blob on the scans. Apparently it is low grade and the neuro surgeon said he would normally not treat it yet but as JD is so young, he wanted to look at chemo therapy and radiation. First, he suggested doing a PET scan.

JD had a PET scan 2 weeks ago and we are still waiting for news on that. 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.

We are seeing the Clinical Oncologist on the 20th of November. The after after is this interesting event: Low-grade brain tumour information day. I feel a day out in London coming.