I keep saying that 'hopefully today or this week I will have some answers' - I still don't.
There's an old proverb that says 'a watched kettle never boils'. Waiting for a diagnosis is a bit like watching the kettle to boil. I have been getting on with everyday things but the not knowing is always in the back of my mind.
Last week I went out for dinner with some of the ladies from the research project. It was great catching up with everyone and having some time to talk and get to know each other. I'm looking forward to getting together again some time. On Saturday night I had dinner with the people in my dinner group. I really love these nights - lots of good food, great company and so much fun. We only have one meal left together as a group and I have my name down for the next round of dinner groups. It's a great way to get out and meet people and I'm looking forward to meeting more people.
Last week I also had my second MRI to check for a tumour. It have now finally been cleared of having a tumour which is great but the good news is totally offset by the news that I have a degenerative eye disease. The week has been pretty tough with having to come to terms with the news that I don't have a tumour and that I have a degenerative eye disease, the attitude of a doctor and the still not having a definite diagnosis.
I have been given an appointment at the hospital but an 'urgent' appointment is six weeks away. Six weeks is a long time to wait when I still don't have a diagnosis and there are so many questions that I want answered. Rather than wait another six weeks I am seeing the Neuro - Opthomologist in his private rooms this afternoon. I am really hoping that I will get some answers this afternoon but am aware that maybe I wont.
On Tuesday I also had another bone and CT scans on my foot to see if the bone is healing at all. I have been in the CAM boot now for over 12 weeks and while my foot does feel better than it did at the start I am still having a lot of pain where the fracture is. I should get the results of the scans today as well so will know if I will have to keep wearing the CAM boot or if I will need any further treatment.
My appointment with the Neuro - Opthomologist is at 2.45pm this afternoon. I am feeling really nervous about the possibility of not being given a diagnosis again but I'm also feeling nervous about actually getting a diagnosis that I really don't want to hear.
To help keep my mind off the appointment this afternoon I am going in to work for a few hours. My friend Andrea is going to come with me today so it will be good to have some support as I think that whatever the news it's going to be hard.
So it's with a deep breathe in and lots of prayers that I face another day of wondering if I will finally be given a diagnosis.
Thursday, July 30, 2009
Wednesday, July 15, 2009
One more week of waiting......
Hopefully this week will be a week of answers.
On Sunday I will officially be allowed to go out again. My week of quarantine will have finished just in time for me to go back to work.
The fracture in my foot hadn't fully healed so I have had to continue to wearing the CAM boot. On Wednesday I see the doctor again so I will find out if I can take it off or if I have to keep wearing it for another few weeks. It's been 12 weeks now so I am hoping that it wont be too much longer until I can take it off.
On Tuesday I have my second MRI to see if I have a pituitary tumour. Hopefully I will have some answers a few days after the scan so that I know what I am dealing with. I'm probably the only person in the world praying that I have a tumour as the thought of going blind scares me more. In addition to the problems with my peripheral vision I have also been having trouble with my short term memory.
Apparently short term memory loss can also be a symptom of a pituitary tumour. I had a neurological assessment last week which has shown that I have 'significant problems' with taking in new information. I've had trouble reading and haven't read a book in over a year. I'm always forgetting that I have to do something or ring someone. I've really struggled with studying and while I passed the subject I found it hard to remember anything said in class. At work I often forget to do something that my boss has asked me to. The worst thing though has been burning things on the stove. So many times I've put something on to cook, totally forgotten about it only to find a very burnt saucepan when the smoke alarm goes off. I tried lots of things to help me remember that I have something cooking on the stove. I set timers and then when the timer goes off I forget why I have set the timer!
I've been told there is nothing I can do to help improve my memory (another reason to hope I have a tumour) but I have been given some strategies to help me remember things. I now keep a book with me and write down anything I have to do. I also keep a book at work in which I write everything I am asked to do or need to follow-up. I have also been advised to postpone my studies as I struggled a lot last semester. I only have two subjects to go until I complete my Advanced Diploma of Accounting so I found it hard to accept that I needed to withdraw from the course this semester. The question remains however, 'what happens if it is not a tumour?'
As I start to count down the days until I have my MRI (3 days to go) the 'waiting' then begins all over again. Waiting to get the MRI results. If I have a tumour I'll be waiting to see the neurosurgeons and then waiting for whatever treatment will be required. If I don't have a tumour then another long wait begins for an appointment to see a Neuro-opthomologist at the Eye and Ear Hospital to find out if I will loose my sight.
How are you meant to feel while you wait for tests and appointments? How are you meant to feel when your told that you might have a brain tumour? How are you meant to feel when your told you might go blind? How are you meant to feel when your told you might have permanent short term memory loss?
Are you allowed to feel angry with God, with yourself, with your body or with the world? Are you allowed to feel angry that your life has changed? Are you allowed to feel frustrated waiting for appointments? Are you allowed to feel as though you can't cope with anymore things? Are you allowed to feel sorry for yourself? Are you allowed to have bad days? Are you allowed to cry?
On Sunday I will officially be allowed to go out again. My week of quarantine will have finished just in time for me to go back to work.
The fracture in my foot hadn't fully healed so I have had to continue to wearing the CAM boot. On Wednesday I see the doctor again so I will find out if I can take it off or if I have to keep wearing it for another few weeks. It's been 12 weeks now so I am hoping that it wont be too much longer until I can take it off.
On Tuesday I have my second MRI to see if I have a pituitary tumour. Hopefully I will have some answers a few days after the scan so that I know what I am dealing with. I'm probably the only person in the world praying that I have a tumour as the thought of going blind scares me more. In addition to the problems with my peripheral vision I have also been having trouble with my short term memory.
Apparently short term memory loss can also be a symptom of a pituitary tumour. I had a neurological assessment last week which has shown that I have 'significant problems' with taking in new information. I've had trouble reading and haven't read a book in over a year. I'm always forgetting that I have to do something or ring someone. I've really struggled with studying and while I passed the subject I found it hard to remember anything said in class. At work I often forget to do something that my boss has asked me to. The worst thing though has been burning things on the stove. So many times I've put something on to cook, totally forgotten about it only to find a very burnt saucepan when the smoke alarm goes off. I tried lots of things to help me remember that I have something cooking on the stove. I set timers and then when the timer goes off I forget why I have set the timer!
I've been told there is nothing I can do to help improve my memory (another reason to hope I have a tumour) but I have been given some strategies to help me remember things. I now keep a book with me and write down anything I have to do. I also keep a book at work in which I write everything I am asked to do or need to follow-up. I have also been advised to postpone my studies as I struggled a lot last semester. I only have two subjects to go until I complete my Advanced Diploma of Accounting so I found it hard to accept that I needed to withdraw from the course this semester. The question remains however, 'what happens if it is not a tumour?'
As I start to count down the days until I have my MRI (3 days to go) the 'waiting' then begins all over again. Waiting to get the MRI results. If I have a tumour I'll be waiting to see the neurosurgeons and then waiting for whatever treatment will be required. If I don't have a tumour then another long wait begins for an appointment to see a Neuro-opthomologist at the Eye and Ear Hospital to find out if I will loose my sight.
How are you meant to feel while you wait for tests and appointments? How are you meant to feel when your told that you might have a brain tumour? How are you meant to feel when your told you might go blind? How are you meant to feel when your told you might have permanent short term memory loss?
No one tells you.
Are you allowed to feel angry with God, with yourself, with your body or with the world? Are you allowed to feel angry that your life has changed? Are you allowed to feel frustrated waiting for appointments? Are you allowed to feel as though you can't cope with anymore things? Are you allowed to feel sorry for yourself? Are you allowed to have bad days? Are you allowed to cry?
No one tells you.
In quarantine for a week.
I am in quarantine for seven days!
I can't believe that on top of everything else I am now being treated for a suspected case of the swine flu. When I get sick Sue, my sister always says I must have killed a china man. I'm not sure where that saying came from but I think I must have killed a whole village of china men!
One good thing is that I have plenty of time to work on my quilts. I only have two more blocks to do on Jacob's quilt and then the hard work of laying it out and hand quilting it begins. I have a lot more to do on Hannah's quilt as the blocks are smaller. I have been sewing the material onto the cards so that I can sew some more blocks together.
Rhonda, (my other sister) has chosen a design for her quilt. I am going to make it an 'Asian' theme in black and white cotton prints and black and red silk. I have been buying pieces of material off EBay and found a beautiful piece of silk like material in black with a red 'Asian' design over it.
The quilt will be a fairly simple design with a larger centre block of black and white geisha women surrounded by a border of red satin. This will then be surrounded by smaller squares of black and white fabrics then a larger border of the black with red print satin. It will be a challenge sewing the satin material by hand but one I'm keen to try.
I've decided to
make a different quilt for Sarah. I saw a pattern in a quilting magazine that I loved more than the quilt I had first chosen to make. Like with Hannah's quilt I had to have the material sent to me, this time from Adelaide. Quite by accident the material f
or both Sarah and Hannah quilt's is from the 'Max New' range of fabrics. I hope that Sarah (and Ruth) like this pattern and the material. I guess if they don't I'll just have to keep it for myself.
I can't believe that on top of everything else I am now being treated for a suspected case of the swine flu. When I get sick Sue, my sister always says I must have killed a china man. I'm not sure where that saying came from but I think I must have killed a whole village of china men!
One good thing is that I have plenty of time to work on my quilts. I only have two more blocks to do on Jacob's quilt and then the hard work of laying it out and hand quilting it begins. I have a lot more to do on Hannah's quilt as the blocks are smaller. I have been sewing the material onto the cards so that I can sew some more blocks together.
Rhonda, (my other sister) has chosen a design for her quilt. I am going to make it an 'Asian' theme in black and white cotton prints and black and red silk. I have been buying pieces of material off EBay and found a beautiful piece of silk like material in black with a red 'Asian' design over it.
The quilt will be a fairly simple design with a larger centre block of black and white geisha women surrounded by a border of red satin. This will then be surrounded by smaller squares of black and white fabrics then a larger border of the black with red print satin. It will be a challenge sewing the satin material by hand but one I'm keen to try.
I've decided to
make a different quilt for Sarah. I saw a pattern in a quilting magazine that I loved more than the quilt I had first chosen to make. Like with Hannah's quilt I had to have the material sent to me, this time from Adelaide. Quite by accident the material f
or both Sarah and Hannah quilt's is from the 'Max New' range of fabrics. I hope that Sarah (and Ruth) like this pattern and the material. I guess if they don't I'll just have to keep it for myself.
Subscribe to:
Posts (Atom)