My beautiful friend Donna passed away, peacefully in her sleep, on 3 March 2010.
She was cremated and her ashes scattered on the water outside her home; the same waters she used to love watching pass her window.
Donna told me once, when she was still able to talk, about an extraordinary experience she had had when she was meditating. She said at one moment she truly was empty of all thoughts and somehow she was filled with a whiteness that was so "beautiful, but beautiful is too small a word". Donna said she thought that it was her Dad, coming to show her what death was like, to not be afraid, to know that it truly was sublimely beautiful. After that experience Donna said she wanted to die, not because she didn't want to live but because she wanted to go there again, to experience that fantastic, beautiful place again.
I know you're there darling girl. And somehow, you're here too.
I love you
Deanne
Friday, March 12, 2010
Thursday, December 10, 2009
Sex in the City (Tumour style)
”Is there a fine line between intelligence, feelings and cognitive –can we get the balance right?”.
Two weeks ago Julian and I went away for the week which meant that there was a bit of planning for me and therefore a bit more anxiety provoking - packing and those sort of things. I think, as a consequence, old habits appeared; I wanting to be in control, a traffic jam, the car play up; things were not in our favour.
As time passed I realized that I was extremely anxious which was a combination of anxiety, steroids and not knowing how I would go being away from the hospital if things got worse. From that experience I decided to take myself off the steroids. The consequence of that was that I got lots of sleep; I felt like myself; the anxiety went away and we went into a relaxed state. We were laughing more and it was evident that the steroids were the problem.
As the days went on and the effects of the steroids were less, I started not being able to talk properly and I’m still having problems with my speech and other things I can’t do as well - email, texts and all that stuff has become worse. As a consequence I became worried again as to what the meaning of all this is. Could it be things have got worse or was it because I had less steroids inside of me?
By the time Julian went back to work I was feeling a bit more hopeless and this last week feeling really sad. I noticed that it was like a downward spiral by focussing on emotions only, I was not my normal pragmatic self. Basically I stopped doing things like the meditation; I stopped the brain test; I stopped emails and was just getting into myself. I was still seeing people but not telling them I was feeling that way and in some ways I wasn’t telling myself how it was affecting me. I noticed that I was avoiding it. That’s another old habit.
I was getting more and more sad about it but really just sitting with it and not doing anything about it. When I was with people I was just being myself but really underneath I was really despondent. It’s a habit I know and people don’t know that that is happening for me.
It came to a head that weekend. We had a long drive - really in hindsight we shouldn’t have gone so far. We could have done something in the city rather than driving for 2 hours. We weren’t thinking about me; we were fitting in with other people and as a consequence it was a sporadic drive. We both tried to be helpful with one and another but it wasn’t working because really underneath we weren’t looking after ourselves. We were looking after other people’s needs – not our own.
The people that where there with us were also being affected by our mood so that didn’t help. It was a good experience but the underlying for us was we weren’t helping ourselves. Then, at the end of the day, we ended up getting a fine for being in a no standing zone; a $100 fine. That was almost a sign that we weren’t looking after ourselves. It was the piece de resistance of the whole experience.
That experience cemented my whole week. But as a consequence, we ended up talking about how it got to there and having a very meaningful talk about it and how we would do it differently. From talking about it and actually expressing my emotions of feeling depressed and experiencing crying with Julian was like halving the problems…. It didn’t feel as bad afterwards. Feeling the emotion and talking didn’t feel as hard as I it thought it was. Having expressed it I was then able to see what was there.
I think it was a combination of cognition and expressing the emotions that helped and the next day I was feeling quite happy. Nothing had changed; I still cant’ speak properly and I have problems with my right hand but emotionally I feel OK with it.
What I’m trying to say is it lifted the depression a bit. Despite not knowing what is going to happen, hence I’m not sure, there’s a line between emotion and expressing how I feel and being OK with it. There’s something about … I was able to be logical. I had expressed my emotions so I was able to look pragmatically and logically say that no one knows what is going on; sharing it and having a bit of emotion – all of that helped.
There’s a fine line between being too emotional – too much of that brings the downward spiral and I realized that afterwards that was happening. Just emotion is not enough. The whole point of this is it’s a fine line getting it all in the right place. I have noticed all week - while it’s frustrating trying to talk – I’ve picked up the weights; I’ve sent emails (even though they don’t sound quite right); the more I do it the better I’ll be. The more logical I am the better I do things. My first blog was about me wanting to be more emotional but I realised that going all that way can be damaging for me.
Hence the title – what’s the right line? She’ll (Carrie from Sex in the City) have one line. Her gossip column - what’s it all about? The tumour. That was what I wanted to talk about. My zest for being more emotional doesn’t always help – just that alone doesn’t help. It’s a combination of all of it. Emotion and logic. That works.
Two weeks ago Julian and I went away for the week which meant that there was a bit of planning for me and therefore a bit more anxiety provoking - packing and those sort of things. I think, as a consequence, old habits appeared; I wanting to be in control, a traffic jam, the car play up; things were not in our favour.
As time passed I realized that I was extremely anxious which was a combination of anxiety, steroids and not knowing how I would go being away from the hospital if things got worse. From that experience I decided to take myself off the steroids. The consequence of that was that I got lots of sleep; I felt like myself; the anxiety went away and we went into a relaxed state. We were laughing more and it was evident that the steroids were the problem.
As the days went on and the effects of the steroids were less, I started not being able to talk properly and I’m still having problems with my speech and other things I can’t do as well - email, texts and all that stuff has become worse. As a consequence I became worried again as to what the meaning of all this is. Could it be things have got worse or was it because I had less steroids inside of me?
By the time Julian went back to work I was feeling a bit more hopeless and this last week feeling really sad. I noticed that it was like a downward spiral by focussing on emotions only, I was not my normal pragmatic self. Basically I stopped doing things like the meditation; I stopped the brain test; I stopped emails and was just getting into myself. I was still seeing people but not telling them I was feeling that way and in some ways I wasn’t telling myself how it was affecting me. I noticed that I was avoiding it. That’s another old habit.
I was getting more and more sad about it but really just sitting with it and not doing anything about it. When I was with people I was just being myself but really underneath I was really despondent. It’s a habit I know and people don’t know that that is happening for me.
It came to a head that weekend. We had a long drive - really in hindsight we shouldn’t have gone so far. We could have done something in the city rather than driving for 2 hours. We weren’t thinking about me; we were fitting in with other people and as a consequence it was a sporadic drive. We both tried to be helpful with one and another but it wasn’t working because really underneath we weren’t looking after ourselves. We were looking after other people’s needs – not our own.
The people that where there with us were also being affected by our mood so that didn’t help. It was a good experience but the underlying for us was we weren’t helping ourselves. Then, at the end of the day, we ended up getting a fine for being in a no standing zone; a $100 fine. That was almost a sign that we weren’t looking after ourselves. It was the piece de resistance of the whole experience.
That experience cemented my whole week. But as a consequence, we ended up talking about how it got to there and having a very meaningful talk about it and how we would do it differently. From talking about it and actually expressing my emotions of feeling depressed and experiencing crying with Julian was like halving the problems…. It didn’t feel as bad afterwards. Feeling the emotion and talking didn’t feel as hard as I it thought it was. Having expressed it I was then able to see what was there.
I think it was a combination of cognition and expressing the emotions that helped and the next day I was feeling quite happy. Nothing had changed; I still cant’ speak properly and I have problems with my right hand but emotionally I feel OK with it.
What I’m trying to say is it lifted the depression a bit. Despite not knowing what is going to happen, hence I’m not sure, there’s a line between emotion and expressing how I feel and being OK with it. There’s something about … I was able to be logical. I had expressed my emotions so I was able to look pragmatically and logically say that no one knows what is going on; sharing it and having a bit of emotion – all of that helped.
There’s a fine line between being too emotional – too much of that brings the downward spiral and I realized that afterwards that was happening. Just emotion is not enough. The whole point of this is it’s a fine line getting it all in the right place. I have noticed all week - while it’s frustrating trying to talk – I’ve picked up the weights; I’ve sent emails (even though they don’t sound quite right); the more I do it the better I’ll be. The more logical I am the better I do things. My first blog was about me wanting to be more emotional but I realised that going all that way can be damaging for me.
Hence the title – what’s the right line? She’ll (Carrie from Sex in the City) have one line. Her gossip column - what’s it all about? The tumour. That was what I wanted to talk about. My zest for being more emotional doesn’t always help – just that alone doesn’t help. It’s a combination of all of it. Emotion and logic. That works.
Saturday, November 21, 2009
Realising I have Cancer
I was realizing I have cancer …(long pause) … I have spent the last 4 years denying that I’m unwell. And believing that some sort of miracle would make the tumour go away.
I think a lot of those thoughts go around positive thinking and the belief through literature. People like Ian Galwer, Louise Hay, the here-and-now Echart Tolle reading; those sort of things, their beliefs, and being encouraged by the possibility of a cure. My own denial; or staying in the thinking mode, and ignoring signs and symptoms as evidence that I’ll be all right.
With the recent two episodes and the fact that it’s been a long, lengthy, harrowing process, has enabled me to realize that I am, in fact, quite unwell. And I have been able to see that I am a cancer patient. Therefore I’m no longer in denial.
This revelation - or revolution - has in fact given me a break or freedom to feel something like … I feel like I have been given a break through this revelation. It feels freeing; that it has taken the pressure off me to feel well. And enabled me to slow down and take each moment by moment. To be very present to what’s happening. So I recognize that I am unwell through that.
There are times, when I feel particularly anxious, that it brings on small seizures. When I have had a seizure I really catastrophized them but now I realize it’s because of feeling anxious, fatigued, tired, and inevitably they are going to present themselves because of my physical symptoms. I realize that these symptoms are going to be symptoms that I have to live with rather than less. I’m more pragmatic about understanding what’s behind the seizures rather than thinking that it is something that it’s not.
Yesterday I went out - on the bus - and went to the shops, and with this revelation I - needless to say - I noticed people who were unwell themselves. A Gestalt awareness of seeing yourself. You start seeing things. The opening up of my eyes allowed me to see that there are other people out there who are also suffering. It was quite comforting to experience.
So gradually I am noticing a slow improvement. I can text, email, walk a bit better, improved on my memory tests and now I’m 63 years of age!! My concentration is much better therefore I bought a book yesterday to read. It feels like a slow process, which is frustrating, but describing it is another realization that the improvement is good and it’s my impatience which is making it frustrating.
I’m still taking steroids - 2 milligram in the morning, which is half a tablet, and my sleep is actually worse. My weight has increased significantly so I feel fat and ugly. I can’t do much exercise because I’m too tired though I’m still continuing with the hand weights. I no longer have those murderous thoughts. I feel that some sense of humour is almost back. And I do generally feel a bit calmer with them.
I feel that the weather hasn’t helped and the 38 degrees yesterday and whatever it was last night doesn’t help with the sleep. I do get some nauseous sensations from time to time. I’m not sure if that’s down to lack of sleep or the tablets or a combination of both. I have very bad, dried mouth which is definitely the injection. It’s been worse since I’ve had it. I’m having another 3rd treatment on 2 December and after that will have an MRI scan - possibly mid December.
Brian has been very kind… more than that… he’s been very proactive with trying to help me get some treatment and has managed, through a number of resources, to get Roche to pay for my next treatment. He is a good man.
All in told, things are looking up.
Finito.
I think a lot of those thoughts go around positive thinking and the belief through literature. People like Ian Galwer, Louise Hay, the here-and-now Echart Tolle reading; those sort of things, their beliefs, and being encouraged by the possibility of a cure. My own denial; or staying in the thinking mode, and ignoring signs and symptoms as evidence that I’ll be all right.
With the recent two episodes and the fact that it’s been a long, lengthy, harrowing process, has enabled me to realize that I am, in fact, quite unwell. And I have been able to see that I am a cancer patient. Therefore I’m no longer in denial.
This revelation - or revolution - has in fact given me a break or freedom to feel something like … I feel like I have been given a break through this revelation. It feels freeing; that it has taken the pressure off me to feel well. And enabled me to slow down and take each moment by moment. To be very present to what’s happening. So I recognize that I am unwell through that.
There are times, when I feel particularly anxious, that it brings on small seizures. When I have had a seizure I really catastrophized them but now I realize it’s because of feeling anxious, fatigued, tired, and inevitably they are going to present themselves because of my physical symptoms. I realize that these symptoms are going to be symptoms that I have to live with rather than less. I’m more pragmatic about understanding what’s behind the seizures rather than thinking that it is something that it’s not.
Yesterday I went out - on the bus - and went to the shops, and with this revelation I - needless to say - I noticed people who were unwell themselves. A Gestalt awareness of seeing yourself. You start seeing things. The opening up of my eyes allowed me to see that there are other people out there who are also suffering. It was quite comforting to experience.
So gradually I am noticing a slow improvement. I can text, email, walk a bit better, improved on my memory tests and now I’m 63 years of age!! My concentration is much better therefore I bought a book yesterday to read. It feels like a slow process, which is frustrating, but describing it is another realization that the improvement is good and it’s my impatience which is making it frustrating.
I’m still taking steroids - 2 milligram in the morning, which is half a tablet, and my sleep is actually worse. My weight has increased significantly so I feel fat and ugly. I can’t do much exercise because I’m too tired though I’m still continuing with the hand weights. I no longer have those murderous thoughts. I feel that some sense of humour is almost back. And I do generally feel a bit calmer with them.
I feel that the weather hasn’t helped and the 38 degrees yesterday and whatever it was last night doesn’t help with the sleep. I do get some nauseous sensations from time to time. I’m not sure if that’s down to lack of sleep or the tablets or a combination of both. I have very bad, dried mouth which is definitely the injection. It’s been worse since I’ve had it. I’m having another 3rd treatment on 2 December and after that will have an MRI scan - possibly mid December.
Brian has been very kind… more than that… he’s been very proactive with trying to help me get some treatment and has managed, through a number of resources, to get Roche to pay for my next treatment. He is a good man.
All in told, things are looking up.
Finito.
Thursday, November 12, 2009
Mercy Palliative Care
Basically Mercy Palliative Care is a 24 hour district nursing service to look after people who potentially end up being in day hospital from now to the tail end or when you don’t need them any more. Very confronting. Came at 10.30 this morning and I haven’t processed it yet but thought I would through this blog. It was an assessment of where I’m at but I now have my own file; which is now in front of me.
The feeling that it brings up for me is just a bit more real - that that’s the way I could go; ending up in a hospice or whatever, or not.
So today, when she was talking to me, I was thinking that she was so nice - the girl that interviewed me – as with most nurses (Note: Donna has been a Nurse for over 20 years) I appreciate that it’s a tough profession and people are matter of fact. It was a clinical interview - she was asking lots of questions. Things around “do you have constipation? Can you shower on your own?” All those basic sort of questions. What sort of medication I’m on and obviously doing a summary of what has happened since 2005.
I don’t know …something about the file that’s… having it in the house feels a bit more real. She talked about down the track I might need to have injections for nausea and being available 24/7. It feels a bit more…what’s its like?.. a very useful service but not a service that I was ever going to need. But it’s something I need to deal with and a supportive service …confrontative. Frightening. Fearful . Thinking about feelings makes me feel a bit anxious. The unknown of what’s ahead.
I’ve eaten a lot of food today - not necessary. I’ve got really bad indigestion; trying to keep it down. I keep eating. I know I don’t need to do that much so I recognize that there’s still the iceberg, There’s stuff I’m still trying to push down rather than realize. I’m sure it will come. I feel like I’m pushing those emotions down through eating and watching the telly and not really feeling what’s going on.
So I did listen to the lady - couldn’t tell you what her name was - there is a counsellor there whose been there 1.5 years and I did think about it. I thought about not looking after myself but I did get the lady to get Bridgit to give me a call. It would be good to go to someone who knows about palliative care. It pushed me over the edge - palliative care.
I still haven’t cried about this - not one tear. In order to get through it I need to do that.
I’m just thinking… so I’m pleased that the lady came and made me think about how I’m still pushing my emotions down and how unhelpful that is. They are a really good service 24/7 a day and its free. The lady seems really nice and they are going to come every week on a Thursday. So organized and even thought its only one assessment, it seems a good service.
People should be aware it’s real if it feels really real. I wouldn’t say I’ve had a wake up call but it’s made me think a bit more about what I’m doing in regards to emotion.
They have a booklet - not sure whether people do read to understand a bit about the service. As bullet points they do; nursing service; medical service; allied health service; counselling; pastoral care; music therapy; bereavement support ; volunteers and there is information around patient and carers; nutrition and diet; nausea and vomiting; mouth care; bowel care; constipation; diarrhea; just so they know it. It seems like a really impressive service.
If we did go down the road of hospice they use Sunshine Health so its Western Palliative care. So I have a file. To stare at. How does that sound? What is the file? I think it’s a visual with palliative care on it. Often people have a file but I’ve never had a file at my house. People have files but they never keep it - that’s it. I can’t avoid it. I think that’s what it is and the name. Yeah that’s what it is .
I think a way down the track I think of getting through it.. this …yeah it’s the visual thing and the possibility of not getting through it and I haven’t really thought about that as much. Big sigh. I think that’s it.
I was going to just share where the tumour is at. I call it tumour; some people call a lesion; I’m assuming it’s the same thing. It’s in my temple lobe. It’s not the front – it’s on the side on my left and it affects the right hand side. I’ve got a big scar in the middle of the left side. It moves. When it got bigger it seems to affect me having seizures and missing… loss of use of hand and now it affects all of the right hand side and still more on the hand. Not quite sure how ultimately that’s going to go because there’s still a lot of the odemar - you call it swelling - which is being.
In the past it’s not had that much affect but since this started in September it’s been a significant part of my symptoms. I find it difficult to really think about what I’m doing when I’m in the shower because I have to practice. Most times you just have a shower and don’t think about it; you just think about the day but I can’t do that. I have to think about steadying myself in the shower. And getting dressed takes ages. All of it is a very slow process, which can take up to an hour just doing all that.
I’m feeling I’m going to have to stop because I feel really tired. Things seem to have got a bit better but I’m physically drained by it all. All the others times I’ve put on that it hasn’t affected me but this has really affected me. It goes in cycles with whatever is going on in my head. So I’ll know a bit more about what is going on when I have an MRI in December.
I think I’ve put it’s a multiforme which is the highest grade of tumour. It’s one; it’s the primary; it doesn’t metastasize; it stays in the brain. The chemo I was taking was keeping it away but I’m under the impression I can’t use it anymore because it’s not working any more. That’s why we’re looking at other options. The reason why it’s really quite harmful is once it starts growing it grows really quickly. This seemed to happen this year when I went in the second time. I think having two operations that quickly has really affected me physically and emotionally. That capture it do you think??
(Donna asked me to put in that I think Donna’s iceberg is an iceberg of tears frozen in time. Once it melts, there is an iceberg of a lifetime of tears that have to flow and deep in the middle of the iceberg are Donna’s baby tears).
I’ll cry a Noah’s Ark – that’s good; that’s what I need to do.
I think it’s important to put this down. This journey of being a cancer patient. I’ve researched; read various books and I always feel that there’s a bit of constraint and it hasn’t felt real; lots of .. too much thought put into it rather than the feelings; and haven’t .. I remember when Chris O’Brien and Kylie Minogue talked about what was going on for them - I didn’t feel I got what was really going on for them from the heart. That’s the main reason for doing this. People reading this will really feel it. I don’t now how I will feel down the track disclosing this. I hope it wont change. Just as a way of explanation. There’s also that Lance Armstrong - he wrote a bit more about what happened for him but explaining the process as well hopefully it will help people.
I’ve pondered on it today… good to talk about it when it comes and the palliative care helps – it’s all good.
The feeling that it brings up for me is just a bit more real - that that’s the way I could go; ending up in a hospice or whatever, or not.
So today, when she was talking to me, I was thinking that she was so nice - the girl that interviewed me – as with most nurses (Note: Donna has been a Nurse for over 20 years) I appreciate that it’s a tough profession and people are matter of fact. It was a clinical interview - she was asking lots of questions. Things around “do you have constipation? Can you shower on your own?” All those basic sort of questions. What sort of medication I’m on and obviously doing a summary of what has happened since 2005.
I don’t know …something about the file that’s… having it in the house feels a bit more real. She talked about down the track I might need to have injections for nausea and being available 24/7. It feels a bit more…what’s its like?.. a very useful service but not a service that I was ever going to need. But it’s something I need to deal with and a supportive service …confrontative. Frightening. Fearful . Thinking about feelings makes me feel a bit anxious. The unknown of what’s ahead.
I’ve eaten a lot of food today - not necessary. I’ve got really bad indigestion; trying to keep it down. I keep eating. I know I don’t need to do that much so I recognize that there’s still the iceberg, There’s stuff I’m still trying to push down rather than realize. I’m sure it will come. I feel like I’m pushing those emotions down through eating and watching the telly and not really feeling what’s going on.
So I did listen to the lady - couldn’t tell you what her name was - there is a counsellor there whose been there 1.5 years and I did think about it. I thought about not looking after myself but I did get the lady to get Bridgit to give me a call. It would be good to go to someone who knows about palliative care. It pushed me over the edge - palliative care.
I still haven’t cried about this - not one tear. In order to get through it I need to do that.
I’m just thinking… so I’m pleased that the lady came and made me think about how I’m still pushing my emotions down and how unhelpful that is. They are a really good service 24/7 a day and its free. The lady seems really nice and they are going to come every week on a Thursday. So organized and even thought its only one assessment, it seems a good service.
People should be aware it’s real if it feels really real. I wouldn’t say I’ve had a wake up call but it’s made me think a bit more about what I’m doing in regards to emotion.
They have a booklet - not sure whether people do read to understand a bit about the service. As bullet points they do; nursing service; medical service; allied health service; counselling; pastoral care; music therapy; bereavement support ; volunteers and there is information around patient and carers; nutrition and diet; nausea and vomiting; mouth care; bowel care; constipation; diarrhea; just so they know it. It seems like a really impressive service.
If we did go down the road of hospice they use Sunshine Health so its Western Palliative care. So I have a file. To stare at. How does that sound? What is the file? I think it’s a visual with palliative care on it. Often people have a file but I’ve never had a file at my house. People have files but they never keep it - that’s it. I can’t avoid it. I think that’s what it is and the name. Yeah that’s what it is .
I think a way down the track I think of getting through it.. this …yeah it’s the visual thing and the possibility of not getting through it and I haven’t really thought about that as much. Big sigh. I think that’s it.
I was going to just share where the tumour is at. I call it tumour; some people call a lesion; I’m assuming it’s the same thing. It’s in my temple lobe. It’s not the front – it’s on the side on my left and it affects the right hand side. I’ve got a big scar in the middle of the left side. It moves. When it got bigger it seems to affect me having seizures and missing… loss of use of hand and now it affects all of the right hand side and still more on the hand. Not quite sure how ultimately that’s going to go because there’s still a lot of the odemar - you call it swelling - which is being.
In the past it’s not had that much affect but since this started in September it’s been a significant part of my symptoms. I find it difficult to really think about what I’m doing when I’m in the shower because I have to practice. Most times you just have a shower and don’t think about it; you just think about the day but I can’t do that. I have to think about steadying myself in the shower. And getting dressed takes ages. All of it is a very slow process, which can take up to an hour just doing all that.
I’m feeling I’m going to have to stop because I feel really tired. Things seem to have got a bit better but I’m physically drained by it all. All the others times I’ve put on that it hasn’t affected me but this has really affected me. It goes in cycles with whatever is going on in my head. So I’ll know a bit more about what is going on when I have an MRI in December.
I think I’ve put it’s a multiforme which is the highest grade of tumour. It’s one; it’s the primary; it doesn’t metastasize; it stays in the brain. The chemo I was taking was keeping it away but I’m under the impression I can’t use it anymore because it’s not working any more. That’s why we’re looking at other options. The reason why it’s really quite harmful is once it starts growing it grows really quickly. This seemed to happen this year when I went in the second time. I think having two operations that quickly has really affected me physically and emotionally. That capture it do you think??
(Donna asked me to put in that I think Donna’s iceberg is an iceberg of tears frozen in time. Once it melts, there is an iceberg of a lifetime of tears that have to flow and deep in the middle of the iceberg are Donna’s baby tears).
I’ll cry a Noah’s Ark – that’s good; that’s what I need to do.
I think it’s important to put this down. This journey of being a cancer patient. I’ve researched; read various books and I always feel that there’s a bit of constraint and it hasn’t felt real; lots of .. too much thought put into it rather than the feelings; and haven’t .. I remember when Chris O’Brien and Kylie Minogue talked about what was going on for them - I didn’t feel I got what was really going on for them from the heart. That’s the main reason for doing this. People reading this will really feel it. I don’t now how I will feel down the track disclosing this. I hope it wont change. Just as a way of explanation. There’s also that Lance Armstrong - he wrote a bit more about what happened for him but explaining the process as well hopefully it will help people.
I’ve pondered on it today… good to talk about it when it comes and the palliative care helps – it’s all good.
Tuesday, November 10, 2009
Avastin
So last Saturday (31 October) I began to deteriorate. I went to Geelong and suffered from a seizure, which was devastating for me. Julian and I drove home wondering what it all meant. With that we contacted the oncologist and had a meeting with him on the Monday where we talked about our options. Clearly not doing anything wasn’t an option. What treatments were on offer?
I guess what I was quite positive about… I was positive thinking, and it was devastating because I thought it would be good without treatment. It was confronting that I had to have treatment and it was still going on. Having more treatment and the never-ending saga of all that was quite difficult to work through.
But we talked about various options and the best option was an injection every 2 weeks and every injection is $5000 a go. At the moment they are talking about twice a month so a very expensive habit. Julian describes it as a heroin addict because its so expensive but it seems to be the most obvious option.
Luckily I have saved some money so I can at least have 8 treatments before I run out of money. So I’m grateful that I’ve been able to do that and there will be other options with that if it all goes to plan. If it works there will be more chemo but that’s it.
It’s about the drug itself. It is quite harmless in regards to side effects. It reduces the swelling itself so I don’t have to take steroids.
One of the things about it not working and last week was I had to increase the steroids and not sleeping very well and that had its effect. So back on that wagon – so I seem to go up and down and even it’s hard trying to be positive about it. Julian is being great and he is looking at me and saying “how are you going? Well?” and part wants to say “yes” but it’s not truthful.
Sometimes it’s really hard and other times I think “No, I’ll get through this” so it’s rollercoaster emotions.
What I’m finding now is any twitch now I’m wondering what it is - even more so - because that’s a sign of bad things obviously; so it’s exhausting. I don’t’ know what’s exhausting - steroids or I’m ill anyway.
Sometimes I think “what’s it all about and what’s it all for?” but I don’t want to go there and I want to survive and get through this. What gets me through, I’m an optimist - but where does that come from? and why do I want to stay alive? It’s not my time. There’s lots of things I still want to do.
So I’ve had one injection of the drug and when it finished it even felt that it was already being effective; straight after 1.5 hours of being injected. Eventually the treatment will only last 15 minutes (they do it slowly the first couple of times so there isn’t too much impact). This time I’m wondering “is it going to work?”
I recognize I just need to catnap all the time – if I don’t I don’t sleep at all and that doesn’t help. This morning I was up at 4am so I got up and did some relaxation and that seems to help things. Jules goes to work and I sleep for an hour and that helps and I look after my body. I still do affirmations – “I still want to live! I deserve this!” People love and care for me and are being supportive people.
Deanne has started to campaign on my behalf by lobbying the Minister of Health, (Nicola Roxon). It’s lovely to know that she’s behind me in doing that because it’s not something I would do and I know it helps her do something for me. Julian is very supportive of that as well, and Deanne’s husband, Fred, is thoughtful and there is a network of people campaigning and looking after me which is a bit of a thing to discover.
Our friendship has always been good. It is easy. The 4 of us have got to know each much better and that has grown out of this controversy and I don’t think we would have done that if this hadn’t happened. We are all relaxed with each other. If I wasn’t ill it would be hard to discover that it’s easy.
Each day I’ve started to do weights - a bit more each day; which is good. I’m also doing PSE quizzes you can do. You get a score each day and I’ve got a brain of an 80 year old but I’ve only just started doing it so hopefully doing mind games will start helping me that way. And also I’ve been watching “Sex in the City”. I’m on the 5th series so going to have to get another series when it’s finished - which keeps me distracted.
All those people being behind me; people are coming out of the woodwork wanting to help; which is all really positive so you can’t stay too negative about things. Just getting through it all and coming out the end. And perhaps appreciating life and people and those around me and how important people are in my life. I have some beautiful friends and I love them even more so that’s got to be a good thing.
I guess what I was quite positive about… I was positive thinking, and it was devastating because I thought it would be good without treatment. It was confronting that I had to have treatment and it was still going on. Having more treatment and the never-ending saga of all that was quite difficult to work through.
But we talked about various options and the best option was an injection every 2 weeks and every injection is $5000 a go. At the moment they are talking about twice a month so a very expensive habit. Julian describes it as a heroin addict because its so expensive but it seems to be the most obvious option.
Luckily I have saved some money so I can at least have 8 treatments before I run out of money. So I’m grateful that I’ve been able to do that and there will be other options with that if it all goes to plan. If it works there will be more chemo but that’s it.
It’s about the drug itself. It is quite harmless in regards to side effects. It reduces the swelling itself so I don’t have to take steroids.
One of the things about it not working and last week was I had to increase the steroids and not sleeping very well and that had its effect. So back on that wagon – so I seem to go up and down and even it’s hard trying to be positive about it. Julian is being great and he is looking at me and saying “how are you going? Well?” and part wants to say “yes” but it’s not truthful.
Sometimes it’s really hard and other times I think “No, I’ll get through this” so it’s rollercoaster emotions.
What I’m finding now is any twitch now I’m wondering what it is - even more so - because that’s a sign of bad things obviously; so it’s exhausting. I don’t’ know what’s exhausting - steroids or I’m ill anyway.
Sometimes I think “what’s it all about and what’s it all for?” but I don’t want to go there and I want to survive and get through this. What gets me through, I’m an optimist - but where does that come from? and why do I want to stay alive? It’s not my time. There’s lots of things I still want to do.
So I’ve had one injection of the drug and when it finished it even felt that it was already being effective; straight after 1.5 hours of being injected. Eventually the treatment will only last 15 minutes (they do it slowly the first couple of times so there isn’t too much impact). This time I’m wondering “is it going to work?”
I recognize I just need to catnap all the time – if I don’t I don’t sleep at all and that doesn’t help. This morning I was up at 4am so I got up and did some relaxation and that seems to help things. Jules goes to work and I sleep for an hour and that helps and I look after my body. I still do affirmations – “I still want to live! I deserve this!” People love and care for me and are being supportive people.
Deanne has started to campaign on my behalf by lobbying the Minister of Health, (Nicola Roxon). It’s lovely to know that she’s behind me in doing that because it’s not something I would do and I know it helps her do something for me. Julian is very supportive of that as well, and Deanne’s husband, Fred, is thoughtful and there is a network of people campaigning and looking after me which is a bit of a thing to discover.
Our friendship has always been good. It is easy. The 4 of us have got to know each much better and that has grown out of this controversy and I don’t think we would have done that if this hadn’t happened. We are all relaxed with each other. If I wasn’t ill it would be hard to discover that it’s easy.
Each day I’ve started to do weights - a bit more each day; which is good. I’m also doing PSE quizzes you can do. You get a score each day and I’ve got a brain of an 80 year old but I’ve only just started doing it so hopefully doing mind games will start helping me that way. And also I’ve been watching “Sex in the City”. I’m on the 5th series so going to have to get another series when it’s finished - which keeps me distracted.
All those people being behind me; people are coming out of the woodwork wanting to help; which is all really positive so you can’t stay too negative about things. Just getting through it all and coming out the end. And perhaps appreciating life and people and those around me and how important people are in my life. I have some beautiful friends and I love them even more so that’s got to be a good thing.
Friday, October 30, 2009
Beginning of being out of control
I was thinking about the seizures I’ve been having. The most prominent one was when the seizures wouldn’t stop.
There was one that lasted about 40 minutes - felt like a long time; which was really scary. I did call the neurologist and first of all he didn’t seem to grasp the concept of the fact that I was having a seizure and he just told me to just get on with it and didn’t really seem to ask the right questions. And then he went the other way and said go to the A&E.
I was slurring my words; he wasn’t believing what I was saying. My feelings were that he thought I was putting it on and I didn’t feel that I was being believed. It was like I was drunk and then suddenly he realized this was something serious.
By that stage I was really pissed off and went into the mode of “fuck you; you don’t believe me; I’ll just do it on my own; stubborn; what’s the point of a and e if he’s not going to believe me? and I’ll just ride this out”. In hindsight this was a silly thing to do.
So I’m thinking I’ve got .. there’s something about that - about not being believed, or not good enough, or I’m not important enough. Just the only person I can rely on is me. That’s effectively what I did but the seizure went on for 40 minutes but the whole process went for ages.
I had to ring Julian and get him to come home and we then spoke to Rosenthal, the oncologist, and he wouldn’t do anything because it wasn’t his area of expertise. Again thinking - although Julian came home and it was better - still that feeling of not being heard and just need to do it on my own because no one else gives a shit.
It was quite scary thinking that way, as well that it’s very familiar. Always just getting on with things and putting them behind me and not trying .. just moving on because it’s too hard to do anything else.
So the next time I had a seizure we had a similar thing but on a Sunday. But we decided to go into the emergency dept and that itself was a bad experience because I couldn’t talk well. The more I had a seizure the worse… I couldn’t speak a lot and had to rely on Julian to speak on my behalf and that was very, very confronting because I’ve always looked after myself and didn’t think Julian would be able to represent me properly. I thought he would sit back and do what they say and I kind of … there was a real panic if I didn’t speak out. I was still having a seizure and they were saying I wasn’t but I knew I was. There was a despair of what was going to happen. It was a pivotal moment.
I kept on looking at him and telling him to do something about it and I didn’t trust he was going to do anything even though he was doing everything right. He was actually very good and he kept asking and they were so busy and they fast-tracked me. He couldn’t have done anything different. They couldn’t have gone any faster but it was a really scary, fearful.
I can’t rely on myself because I can’t speak. What’s going to happen cause I can’t speak? But what was good out of that was Jules did everything he could possibly do and in a fairly calming moment he was calming throughout. I don’t know how he did it in all this controversy. He didn’t know I was freaking out.
Julian in the past has always taken a back seat because I’m so controlling but he couldn’t do that and he was able to do what I needed. He kept going on and really supported me and really it was a pivotal moment for me knowing that I’m not alone.
He believed me as well. Everyone else was saying you weren’t but he was 100% listening to what I had to say when everyone else was being dismissive. Then that was when I went into hospital when it all started with the seizures. I think I went in and was discharged the next day and that’s when I went to Professor Kaye and that’s the beginning of the whole process.
And it feels like there is so much to say but it still feels like I’m still there going through it. I think that probably says it. That feels really important. Really I thought.
Having to rely on someone that’s my first time. I couldn’t take control. It’s a major big thing; someone having to look after me. I have never, ever, ever, ever had to do that. That’s it.
There was one that lasted about 40 minutes - felt like a long time; which was really scary. I did call the neurologist and first of all he didn’t seem to grasp the concept of the fact that I was having a seizure and he just told me to just get on with it and didn’t really seem to ask the right questions. And then he went the other way and said go to the A&E.
I was slurring my words; he wasn’t believing what I was saying. My feelings were that he thought I was putting it on and I didn’t feel that I was being believed. It was like I was drunk and then suddenly he realized this was something serious.
By that stage I was really pissed off and went into the mode of “fuck you; you don’t believe me; I’ll just do it on my own; stubborn; what’s the point of a and e if he’s not going to believe me? and I’ll just ride this out”. In hindsight this was a silly thing to do.
So I’m thinking I’ve got .. there’s something about that - about not being believed, or not good enough, or I’m not important enough. Just the only person I can rely on is me. That’s effectively what I did but the seizure went on for 40 minutes but the whole process went for ages.
I had to ring Julian and get him to come home and we then spoke to Rosenthal, the oncologist, and he wouldn’t do anything because it wasn’t his area of expertise. Again thinking - although Julian came home and it was better - still that feeling of not being heard and just need to do it on my own because no one else gives a shit.
It was quite scary thinking that way, as well that it’s very familiar. Always just getting on with things and putting them behind me and not trying .. just moving on because it’s too hard to do anything else.
So the next time I had a seizure we had a similar thing but on a Sunday. But we decided to go into the emergency dept and that itself was a bad experience because I couldn’t talk well. The more I had a seizure the worse… I couldn’t speak a lot and had to rely on Julian to speak on my behalf and that was very, very confronting because I’ve always looked after myself and didn’t think Julian would be able to represent me properly. I thought he would sit back and do what they say and I kind of … there was a real panic if I didn’t speak out. I was still having a seizure and they were saying I wasn’t but I knew I was. There was a despair of what was going to happen. It was a pivotal moment.
I kept on looking at him and telling him to do something about it and I didn’t trust he was going to do anything even though he was doing everything right. He was actually very good and he kept asking and they were so busy and they fast-tracked me. He couldn’t have done anything different. They couldn’t have gone any faster but it was a really scary, fearful.
I can’t rely on myself because I can’t speak. What’s going to happen cause I can’t speak? But what was good out of that was Jules did everything he could possibly do and in a fairly calming moment he was calming throughout. I don’t know how he did it in all this controversy. He didn’t know I was freaking out.
Julian in the past has always taken a back seat because I’m so controlling but he couldn’t do that and he was able to do what I needed. He kept going on and really supported me and really it was a pivotal moment for me knowing that I’m not alone.
He believed me as well. Everyone else was saying you weren’t but he was 100% listening to what I had to say when everyone else was being dismissive. Then that was when I went into hospital when it all started with the seizures. I think I went in and was discharged the next day and that’s when I went to Professor Kaye and that’s the beginning of the whole process.
And it feels like there is so much to say but it still feels like I’m still there going through it. I think that probably says it. That feels really important. Really I thought.
Having to rely on someone that’s my first time. I couldn’t take control. It’s a major big thing; someone having to look after me. I have never, ever, ever, ever had to do that. That’s it.
Thursday, October 29, 2009
Steroids
Been on steroids since 13 September 2009 right up until I came off on 5th October and then went back on Sunday 11 October 2009 and been on them ever since.
Throughout that time (46 days) I haven’t slept a full night. So it’s been draining to say the least.
It feels like now I’m feeling like a cabbage patch doll. My face is so huge it hurts. And I feel because I have to eat; I’m not hungry – it’s almost … I must be sleep deprived but it’s there - a buzz that goes on constantly.
I can’t sleep.
My face is getting bigger and redder but there’s a need to keep doing it because each day there’s less swelling and hopefully by Tuesday - which is the end - but it’s an excruciating experience to go through.
Visually it’s awful but the emotional and physical experience of it is just as emotional.
Initially - the first 3 weeks - I had a “roid” experience where you go from calm to want to murder someone; it’s that bad. I had many of those. You want to really… (Donna exhales)… then feel really guilty because you’ve been such a bitch. And you know they know; Jules knows that it’s not my fault but he is sensitive; you want to be less but it’s still there. I’d understand how anyone would not want to take steroids because there is nothing pleasant about it.
I wanted to capture the steroids feeling. It’s the anger – I’m sure it’s more than steroids underneath. It’s the anger; the tumour is the same – it’s underneath. It’s the anger.
Throughout that time (46 days) I haven’t slept a full night. So it’s been draining to say the least.
It feels like now I’m feeling like a cabbage patch doll. My face is so huge it hurts. And I feel because I have to eat; I’m not hungry – it’s almost … I must be sleep deprived but it’s there - a buzz that goes on constantly.
I can’t sleep.
My face is getting bigger and redder but there’s a need to keep doing it because each day there’s less swelling and hopefully by Tuesday - which is the end - but it’s an excruciating experience to go through.
Visually it’s awful but the emotional and physical experience of it is just as emotional.
Initially - the first 3 weeks - I had a “roid” experience where you go from calm to want to murder someone; it’s that bad. I had many of those. You want to really… (Donna exhales)… then feel really guilty because you’ve been such a bitch. And you know they know; Jules knows that it’s not my fault but he is sensitive; you want to be less but it’s still there. I’d understand how anyone would not want to take steroids because there is nothing pleasant about it.
I wanted to capture the steroids feeling. It’s the anger – I’m sure it’s more than steroids underneath. It’s the anger; the tumour is the same – it’s underneath. It’s the anger.
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