I realised that I haven't really given a proper update about how blobby and I are doing for a while. I felt a bit overwhelmed after the last round of specialist appointments in November. Looking back, I probably had a setback from September to November. The trip away in September really took it out of me and I had quite an increase in fatigue. So by the time I saw my neurologist at the beginning of November I was well and truly over it. It didn't help that I was so emotional, but he did bring up the option of surgery at that time. The latest MRI had shown no increase in tumour size, and the oedema had decreased, but the nausea was persistent and quite frankly I had had enough.
The idea of surgery is quite scary for so many reasons. My neurologist seemed quite keen to consider it. He did acknowledge that the dex, and the tumour itself could all be contributing to the nausea, fatigue etc. I left that visit feeling a bit flat and overwhelmed. He did however prescribe a different anti-nausea drug (motilium) and to see how that went.
The following week I saw my oncologist who pretty much ruled out surgery. His take was that it wouldn't fix anything; it could possibly make me worse. So I would still have the symptoms. And in his words - I could even DIE (which he said in an overly dramatic fashion but I'm quite aware it is one of the risks). He reminded me that the recovery process can take a long time, he is talking years, and that given I am not even one year post treatment I need to be more patient, and kinder to myself. He was very keen to see me reduce the dex though. Especially as the bone scan I had showed that I've lost up to 20% of my bone mass (which means I have osteopenia, a precursor to osteoperosis). After that I saw my neurosurgeon - who in a 5 minute appointment declared me "stable", and to come back in 12 months for a review.
In this time though I started taking the motilium and to say it has helped has been an understatement. The nausea has decreased, and on some days I don't have it at all. On a bad day I find I have to take two tablets, but otherwise one has been keeping it at bay. And because I have been feeling so much better, I took the brave step of reducing the dex. I dropped down to 1.5mg reasonably easy so after a few weeks dropped it again to 1mg. I have to admit that was hard. I spent about a week with increased nausea and fatigue, and sadly there is a level of anxiety that goes with it too (I can't shake the feeling that the swelling is returning or worse when I have a bad day).
Yesterday I saw my neurologist for the first appointment of the year. He was very happy with my progress and was happy to not consider surgery for now, although was very keen to have a "plan" just in case. He discussed that the location of the tumour is so close to vital structures that any growth could be quite significant (as we saw with just a little bit of swelling, only a few millimetres was enough to stop me in my tracks). So I gather he wants to keep monitoring my symptoms and any change means surgery has to be considered. I always get a bit emotional after these appointments. When doing the standard tests (walk in a line, touch my nose with my finger etc) he happily exlaimed how far I've come since he first saw me, which always makes me realise how sick I was. I get the impression my neurologist is pretty chuffed that I am still here and functioning well; I think he expected a worse outcome.
So for now I continue as is, and try to focus on dropping the dex again. I have been very fatigued these past few weeks but the busyness of Christmas and then Charlotte's birthday has taken it's toll. Otherwise I don't see my neurologist again until the end of April, and I will see my oncologist sometime in March. Which will be the longest I've gone without seeing a doctor for over a year! I do have to have some blood and urine tests but they are more for investigation than anything. I've always had dodgy blood pressure and my neurologist has raised that blobby may be causing that, so there are a few tests he is doing to check the functioning of my adrenal gland. It will be interesting to see if that is related.
Unfortunately, the safety net has also reset, so paying the full fee for these appointments will hurt. But I am actually hopeful that this year we won't hit it again, since that means nothing really big has happened. Here is hoping for a calm, peaceful year!
Showing posts with label brain tumour. Show all posts
Showing posts with label brain tumour. Show all posts
Sunday, January 6, 2013
Friday, November 9, 2012
Happy tumerversary to me!
Today is one year to the day that I had my MRI. One year ago today my whole life changed. When I think back to that day when I had my scan, and the days that followed it, it is all such a blur. However once I had the actual diagnosis I remember feeling just a sense of calm. I was sure that I would have surgery by Christmas. That I would be fully recovered after 6 months with maybe some small deficits. Boy was I wrong!
So how are things one year on? Physically, it has taken quite a toll. I still get so fatigued, the dizziness is always present, and the nausea is awful (although I am taking a new anti-nausea drug which is helping). My brain gets so tired that I find it hard to read and think. I have nerve damage in my face (to my trigeminal nerve). My hand shakes when I get too tired. I've put on weight. My hair is thinner where the radiation was. I'm still on 2mg of dexmethasone, and now I'm taking antacids, calcium, and vit D tablets to counteract the effect it is having on my body. But...blobby has not grown in a year. The swelling in my brain from the radiation is decreasing.
When I think back to where I was before the diagnosis I am worse off, but not really by that much (and in different ways). I can't actually believe how long I struggled through, taking care of the kids, and running around being a Mum. Because I was dizzy, nauseous, and oh so fatigued then, I just didn't know why. I have some vivid memories of coming home from Mother's group in tears because it was so exhausting; I felt like a failure that all the other Mum's could cope and I couldn't. At least now I have a reason, although I feel immense guilt that I am not the mother I wanted to be.
Emotionally I am still struggling with my sense of guilt. I have guilt about everything - my need to have a nap, my lack of housework, the fact that I have to be sick at all (and the impact it's had on our family). And also with that a bit of anger. Not really a "why me" type anger, I don't see the point in that. For whatever reason I got dealt this diagnosis, so I just have to live it. But I get angry at how much money we have had to spend on treatment, and daycare, and medical bills. And then I get angry at thinking about all the things we are missing out on (like holidays, and shiny electronic gadgets, and nice couches that don't smell of pee and vomit).
So what else has happened in a year? The kids have grown up. Angus has turned from a little baby into a toddler. Just today he used the word "me" to refer to himself. He is a delight to watch. Charlotte too has changed - she is hardly a toddler now and is entering the world of "little girls". Just recently she has become obsessed with princesses, and jewellery, and has become aware of clothes. It is a remarkable change to watch. Of course they are both doing things like asserting their independence, and we have some interesting (challenging, infuriating) behaviours, but I love them so much. Both are doing well at daycare (they are still in two days per week). Both are growing, and healthy, and thriving. So maybe I am doing something right.
I do love this time of year though. Because we now have the chance to look forward to what is to come. And that is exciting. Soon it will be Christmas, and then Charlotte's birthday, and then the New Year. Obviously I need to keep getting stronger. But I am still hopeful I can return to work next year (yes I know, I need to pace myself on that one). Charlotte will officially start kindy (she has been in the kindy room at daycare for quite a while and is loving it). Angus has quite a few big changes to come (toilet training, eeek, a big boy bed). James will be doing a bit of travelling for work with conferences and so on. We are planning a nice tropical holiday. Life goes on. Unfortunately blobby will be along for the ride so we had better start getting along a bit better!
Tonight we are going to have a lovely bottle of champagne and have a toast: To surviving one whole year with a brain tumour, and may there be many more to come. Happy tumerversary to me!
So how are things one year on? Physically, it has taken quite a toll. I still get so fatigued, the dizziness is always present, and the nausea is awful (although I am taking a new anti-nausea drug which is helping). My brain gets so tired that I find it hard to read and think. I have nerve damage in my face (to my trigeminal nerve). My hand shakes when I get too tired. I've put on weight. My hair is thinner where the radiation was. I'm still on 2mg of dexmethasone, and now I'm taking antacids, calcium, and vit D tablets to counteract the effect it is having on my body. But...blobby has not grown in a year. The swelling in my brain from the radiation is decreasing.
When I think back to where I was before the diagnosis I am worse off, but not really by that much (and in different ways). I can't actually believe how long I struggled through, taking care of the kids, and running around being a Mum. Because I was dizzy, nauseous, and oh so fatigued then, I just didn't know why. I have some vivid memories of coming home from Mother's group in tears because it was so exhausting; I felt like a failure that all the other Mum's could cope and I couldn't. At least now I have a reason, although I feel immense guilt that I am not the mother I wanted to be.
Emotionally I am still struggling with my sense of guilt. I have guilt about everything - my need to have a nap, my lack of housework, the fact that I have to be sick at all (and the impact it's had on our family). And also with that a bit of anger. Not really a "why me" type anger, I don't see the point in that. For whatever reason I got dealt this diagnosis, so I just have to live it. But I get angry at how much money we have had to spend on treatment, and daycare, and medical bills. And then I get angry at thinking about all the things we are missing out on (like holidays, and shiny electronic gadgets, and nice couches that don't smell of pee and vomit).
So what else has happened in a year? The kids have grown up. Angus has turned from a little baby into a toddler. Just today he used the word "me" to refer to himself. He is a delight to watch. Charlotte too has changed - she is hardly a toddler now and is entering the world of "little girls". Just recently she has become obsessed with princesses, and jewellery, and has become aware of clothes. It is a remarkable change to watch. Of course they are both doing things like asserting their independence, and we have some interesting (challenging, infuriating) behaviours, but I love them so much. Both are doing well at daycare (they are still in two days per week). Both are growing, and healthy, and thriving. So maybe I am doing something right.
I do love this time of year though. Because we now have the chance to look forward to what is to come. And that is exciting. Soon it will be Christmas, and then Charlotte's birthday, and then the New Year. Obviously I need to keep getting stronger. But I am still hopeful I can return to work next year (yes I know, I need to pace myself on that one). Charlotte will officially start kindy (she has been in the kindy room at daycare for quite a while and is loving it). Angus has quite a few big changes to come (toilet training, eeek, a big boy bed). James will be doing a bit of travelling for work with conferences and so on. We are planning a nice tropical holiday. Life goes on. Unfortunately blobby will be along for the ride so we had better start getting along a bit better!
Tonight we are going to have a lovely bottle of champagne and have a toast: To surviving one whole year with a brain tumour, and may there be many more to come. Happy tumerversary to me!
Saturday, October 6, 2012
The dreaded D word
I have been consumed lately with the dreaded D word. No, not Dexamethasone, but d..d..diet. There I said it. I can't stop thinking about my diet, and dieting.
I've said before that I don't believe in diets. I believe that you either eat healthy, or you don't. And if you don't, then you are likely to put on weight. I can't really think of a time where I have ever been on a strict diet. Of course I have had times where I've watched what I ate, and a short time where I saw a naturopath for my diminishing energy levels where I started going gluten free for a while, but never a strict diet.
However I have to admit that I am not the slimmest of people, and I am a good 10kg overweight. I can make many excuses for that. I am a comfort eater, so when I get stressed I like nothing more than to sit on the couch with a big bowl of pasta, and a few glasses of wine. I have had many reasons to feel stressed over the years, and probably haven't learnt good coping skills. Of course the IVF and pregnancy all played a part in my fluctuating weight. I have also realised recently that I am a comfort baker. When I am tired, or stressed, I bake. This may not make sense to people, but I find it relaxing and a lot easier than trying to focus on something. Unfortunately, once you bake something, it is there to be eaten.
After I was diagnosed though I became much more aware of being healthy. Of course that began with going to the gym regularly. My motivation for that was purely to increase my strength and stamina. I was using the calories burnt on the equipment (I only did the crosstrainer and the exercise bike) as a guide for how well I had done that day, not necessarily because I wanted to lose weight. Nevertheless, becoming aware of the effort involved in exercise does change the way you eat. I remember coming home after burning off 250 calories thinking I had done so well. As a "treat" I thought I would grab a tim tam and checked the nutritional info on the packet. One biscuit is 100 calories. ONE biscuit. Two would completely undo any good I had done.
It has taken quite some time for my head to catch up with my desire to lose weight. I put on over 5kg while I was in hospital, partly from the dex, partly from that box of chocolates that I couldn't stop eating. I know that the dex makes me put on weight (it increases my appetite and makes me store fat) however I can't blame it completely. I did eat a lot of cake when I got home. And a glass or two of wine with dinner became more than an occassional habit. I have become quite down about my appearance. My face is a bit swollen I can tell, but I have a double chin now. And a pudgy belly that makes people think I'm pregnant. It is demoralising. But I want to change that.
Over the last few weeks I started to track my calorie intake for the day. And that is eye opening as well. It is very surprising how many calories are in simple things like cheese and pasta. For some time now, James and I have been aware of our portion sizes, and counting calories has confirmed what I thought - our general diet with meals is very healthy. However - the snacks I have throughout the day add up. Combined with doing things like finishing off the kids breakfasts, lunches etc, mean I was consuming quite a high calorie load.
So, these last few weeks I have been setting myself many little goals. To try and get to the gym 3 times per week (I was aiming for 4 but that was too much for me). I am doing a resistance program now which I'm enjoying. I also am trying to cut down on wheat products (not cutting out carbs, I don't believe in eliminating one thing from your diet, but there are a scarily high number of calories in carbohydrates so I can see why people cut it out) so that means more salads. We've cut down on the wine drastically (also a good thing for my health, blobby doesn't actually like wine I've learnt) and have cut out takeaways (mainly due to our tight budget but also for our health). I'm still struggling to reduce my baking as I just love to do it, but I am much more aware now of what goes into a recipe, and I can work out how many calories are in just one slice of that cake!
I don't really know if this will shift the weight. I may have to wait until I'm off the dex to really see any changes. But I know that I'm taking a step in the right direction. My overall goal is to be as healthy as I can be. Yes, life is too short to not eat that cake, but if you have too much cake, unfortunately, that cake will shorten your life.
I've said before that I don't believe in diets. I believe that you either eat healthy, or you don't. And if you don't, then you are likely to put on weight. I can't really think of a time where I have ever been on a strict diet. Of course I have had times where I've watched what I ate, and a short time where I saw a naturopath for my diminishing energy levels where I started going gluten free for a while, but never a strict diet.
However I have to admit that I am not the slimmest of people, and I am a good 10kg overweight. I can make many excuses for that. I am a comfort eater, so when I get stressed I like nothing more than to sit on the couch with a big bowl of pasta, and a few glasses of wine. I have had many reasons to feel stressed over the years, and probably haven't learnt good coping skills. Of course the IVF and pregnancy all played a part in my fluctuating weight. I have also realised recently that I am a comfort baker. When I am tired, or stressed, I bake. This may not make sense to people, but I find it relaxing and a lot easier than trying to focus on something. Unfortunately, once you bake something, it is there to be eaten.
After I was diagnosed though I became much more aware of being healthy. Of course that began with going to the gym regularly. My motivation for that was purely to increase my strength and stamina. I was using the calories burnt on the equipment (I only did the crosstrainer and the exercise bike) as a guide for how well I had done that day, not necessarily because I wanted to lose weight. Nevertheless, becoming aware of the effort involved in exercise does change the way you eat. I remember coming home after burning off 250 calories thinking I had done so well. As a "treat" I thought I would grab a tim tam and checked the nutritional info on the packet. One biscuit is 100 calories. ONE biscuit. Two would completely undo any good I had done.
It has taken quite some time for my head to catch up with my desire to lose weight. I put on over 5kg while I was in hospital, partly from the dex, partly from that box of chocolates that I couldn't stop eating. I know that the dex makes me put on weight (it increases my appetite and makes me store fat) however I can't blame it completely. I did eat a lot of cake when I got home. And a glass or two of wine with dinner became more than an occassional habit. I have become quite down about my appearance. My face is a bit swollen I can tell, but I have a double chin now. And a pudgy belly that makes people think I'm pregnant. It is demoralising. But I want to change that.
Over the last few weeks I started to track my calorie intake for the day. And that is eye opening as well. It is very surprising how many calories are in simple things like cheese and pasta. For some time now, James and I have been aware of our portion sizes, and counting calories has confirmed what I thought - our general diet with meals is very healthy. However - the snacks I have throughout the day add up. Combined with doing things like finishing off the kids breakfasts, lunches etc, mean I was consuming quite a high calorie load.
So, these last few weeks I have been setting myself many little goals. To try and get to the gym 3 times per week (I was aiming for 4 but that was too much for me). I am doing a resistance program now which I'm enjoying. I also am trying to cut down on wheat products (not cutting out carbs, I don't believe in eliminating one thing from your diet, but there are a scarily high number of calories in carbohydrates so I can see why people cut it out) so that means more salads. We've cut down on the wine drastically (also a good thing for my health, blobby doesn't actually like wine I've learnt) and have cut out takeaways (mainly due to our tight budget but also for our health). I'm still struggling to reduce my baking as I just love to do it, but I am much more aware now of what goes into a recipe, and I can work out how many calories are in just one slice of that cake!
I don't really know if this will shift the weight. I may have to wait until I'm off the dex to really see any changes. But I know that I'm taking a step in the right direction. My overall goal is to be as healthy as I can be. Yes, life is too short to not eat that cake, but if you have too much cake, unfortunately, that cake will shorten your life.
Sunday, June 10, 2012
A good week
It has been a busy, and a good week. I can actually say that I have improved significantly this week, Over the last few weeks I haven't actually felt any major change, so to be able to really say "I feel better" is wonderful.
Tuesday morning I had a big change. I've had a strange fuzzy feeling in my forehead for a while now. I actually wondered if it was nerve damage as it was only in a small patch, but it was weird and annoying. Tuesday morning it just...went away. It made me feel so much lighter. Tuesday was also a big day as I met with Kylie, a support worker from the charity Mummy's Wish. As some of you have realised, accepting help is not part of my nature. I have mentioned this charity before - they help Mum's who have cancer. Initially I didn't see how I was part of that group. However, while I was in hospital, James and I contacted them as we realised that we did need help. They have been wonderful, and have organised a cleaner to come fortnightly for a few months. It just takes that pressure off me having to do everything. She stayed for an hour, brought a few treats for myself and the kids, and we talked about what was happening. I felt like a huge weight had been lifted to just talk through it all. She validated how I was feeling, and that I wasn't alone.
Thursday was the one bad day this week. I felt very nauseous in the morning and needed a nap both morning and afternoon. I manged to do the vacuuming but it took a couple of hours (by the time you pick up the toys, and put things away, it is just exhausting). Thankfully it was a daycare day so I also had some peace and quiet.
Friday I was feeling good again. We walked the kids to daycare and I was saying to James on the way home how good I was feeling, and then of course how guilty I was feeling about the kids being in daycare and about the house cleaning. Mind you, as I'm saying this, I'm huffing and puffing and plodding up the street, as I'm still pretty slow. He just looked at me; and reminded me that all these things are helping me get better. So yes, I need to just accept the help.
But I did sit and think about how I'm feeling. And I'm over it. I'm over being sick. From now on I don't want to be sick, so I'm not. I know, I'm not "better". I need to find a word to describe where I'm at. "Recovering" still implies being sick. I guess I'm "rehabilitating". "Impaired" maybe? "Damaged goods"? I know I'm still symptomatic. The hand shaking is bothering me. My cognitive impairments are annoying (particularly when I'm trying to talk to people. I'm sure no-one notices, but it is hard work to hold a conversation). My balance is a bit off (I fell over in the kitchen again this week). I've been getting chronic headaches. And the fatigue is still there. It creeps up on me and bam! I'm shattered.
But all that aside, I've had a good week. Today I went back to the gym. I did 40 mins of cardio work, which may have been a tiny bit too much even though it was low intensity. But I did it. I even drove there. This was the first time I drove in nearly two months, and I survived that too! Two months ago I was having vertigo attacks, vomiting, and going rapidly downhill. I have come a long way in that time. I am quite proud of myself that I made it to the gym when just 7 weeks ago I couldn't even walk, or see properly.
This week we are going to see the neurologist again for a follow up so I will be bringing up all my symptoms with him. I may need to go back on some medication. I'm also hoping he will order another MRI as I want to know what's happening inside my head. In the meantime, I am trying to go back to living life as normal as possible, and not being sick.
Tuesday morning I had a big change. I've had a strange fuzzy feeling in my forehead for a while now. I actually wondered if it was nerve damage as it was only in a small patch, but it was weird and annoying. Tuesday morning it just...went away. It made me feel so much lighter. Tuesday was also a big day as I met with Kylie, a support worker from the charity Mummy's Wish. As some of you have realised, accepting help is not part of my nature. I have mentioned this charity before - they help Mum's who have cancer. Initially I didn't see how I was part of that group. However, while I was in hospital, James and I contacted them as we realised that we did need help. They have been wonderful, and have organised a cleaner to come fortnightly for a few months. It just takes that pressure off me having to do everything. She stayed for an hour, brought a few treats for myself and the kids, and we talked about what was happening. I felt like a huge weight had been lifted to just talk through it all. She validated how I was feeling, and that I wasn't alone.
Thursday was the one bad day this week. I felt very nauseous in the morning and needed a nap both morning and afternoon. I manged to do the vacuuming but it took a couple of hours (by the time you pick up the toys, and put things away, it is just exhausting). Thankfully it was a daycare day so I also had some peace and quiet.
Friday I was feeling good again. We walked the kids to daycare and I was saying to James on the way home how good I was feeling, and then of course how guilty I was feeling about the kids being in daycare and about the house cleaning. Mind you, as I'm saying this, I'm huffing and puffing and plodding up the street, as I'm still pretty slow. He just looked at me; and reminded me that all these things are helping me get better. So yes, I need to just accept the help.
But I did sit and think about how I'm feeling. And I'm over it. I'm over being sick. From now on I don't want to be sick, so I'm not. I know, I'm not "better". I need to find a word to describe where I'm at. "Recovering" still implies being sick. I guess I'm "rehabilitating". "Impaired" maybe? "Damaged goods"? I know I'm still symptomatic. The hand shaking is bothering me. My cognitive impairments are annoying (particularly when I'm trying to talk to people. I'm sure no-one notices, but it is hard work to hold a conversation). My balance is a bit off (I fell over in the kitchen again this week). I've been getting chronic headaches. And the fatigue is still there. It creeps up on me and bam! I'm shattered.
But all that aside, I've had a good week. Today I went back to the gym. I did 40 mins of cardio work, which may have been a tiny bit too much even though it was low intensity. But I did it. I even drove there. This was the first time I drove in nearly two months, and I survived that too! Two months ago I was having vertigo attacks, vomiting, and going rapidly downhill. I have come a long way in that time. I am quite proud of myself that I made it to the gym when just 7 weeks ago I couldn't even walk, or see properly.
This week we are going to see the neurologist again for a follow up so I will be bringing up all my symptoms with him. I may need to go back on some medication. I'm also hoping he will order another MRI as I want to know what's happening inside my head. In the meantime, I am trying to go back to living life as normal as possible, and not being sick.
Saturday, May 26, 2012
An up and down week
I feel like this has been an up and down week. I actually felt like I hadn't improved at all, but after chatting with my Mum she feels I have. She has been pulling back on doing things with the kids and the house so I am doing more, and I guess I didn't really notice that. But I have had a couple of bad days where I needed an extra lie down, or I didn't feel up to going for a walk. This morning I actually felt nauseous which I haven't felt for a little while. But then we had a big outing to the shops for a few things (probably the longest I've been out and about in weeks) and I was exhausted afterwards. I did however manage to make chocolate fondants this evening. Sadly they turned out more moist chocolate cake, which is shame, as it means I obviously need to practice making them again. Such a shame.
One big milestone this week was that I stopped the epilim (the anti-convulsant). I wasn't too sure if this was helping me at all. However the day after I had some weird side effects. The ataxia (hand tremor) was incredibly bad; to the point that I couldn't hold objects properly. By the end of the day it had worn off but it was very disconcerting. It is still there a bit today. I will keep an eye on that (and the nausea) and if they continue I might need to go back on the epilim. I was originally put on that as they thought I might be having a migraine type attack, or the nerves were irritated and doing odd things, or something. Unfortunately that same day I slipped and fell down the stairs. I don't think it is related, but obviously can't be sure. It was probably quite comical to watch. I literally bumped my way down 6 steps. I now have a huge bruise on my bottom, and am very sore all over.
I have however, started taking half a valium at bedtime. The dex is really messing with my sleep, and some nights I was only getting 4-5 hours. Once I started taking the valium I found I was getting a good 4 hour chunk, and then a few hours after that which was heavenly. Although that all goes out the window if one of the kids wakes up. I hate that I'm taking something like that, but I know once I'm off the dex I can also stop taking it.
I also had a bad day this week when I finally pulled my head out of the sand and asked James how the finances were looking. I wish I was still oblivious. Ouch is a good word. A combination of medical bills, daycare fees, plus all the incidentals from my time in hospital (car parking, petrol, extra expenses etc etc) has hit the hip pocket hard. And I shed a tear about that. And then got a bit angry. We will be fine, all the bills will still get paid (we won't have any savings left though). But it means no little extras at all. I was hoping that we could take the kids away for a few days but that won't happen. I bought some new clothes last week (a total of $70 to get me through winter) and am now regretting that. Stupidly I am craving a nice restaurant meal and was hoping James and I could have a treat but that won't happen either. And then I got annoyed at myself as there are so many people for whom these things aren't even possible anyway. So I should stop complaining. I just get angry when I think how much this has cost us in real terms. But I felt that way about the IVF too.
I have to keep telling myself that I will get better; and then I can go back to work and ease the pressure financially. My goal is to be back at work by the end of the year. Now blobby just needs to co-operate and start behaving!
One big milestone this week was that I stopped the epilim (the anti-convulsant). I wasn't too sure if this was helping me at all. However the day after I had some weird side effects. The ataxia (hand tremor) was incredibly bad; to the point that I couldn't hold objects properly. By the end of the day it had worn off but it was very disconcerting. It is still there a bit today. I will keep an eye on that (and the nausea) and if they continue I might need to go back on the epilim. I was originally put on that as they thought I might be having a migraine type attack, or the nerves were irritated and doing odd things, or something. Unfortunately that same day I slipped and fell down the stairs. I don't think it is related, but obviously can't be sure. It was probably quite comical to watch. I literally bumped my way down 6 steps. I now have a huge bruise on my bottom, and am very sore all over.
I have however, started taking half a valium at bedtime. The dex is really messing with my sleep, and some nights I was only getting 4-5 hours. Once I started taking the valium I found I was getting a good 4 hour chunk, and then a few hours after that which was heavenly. Although that all goes out the window if one of the kids wakes up. I hate that I'm taking something like that, but I know once I'm off the dex I can also stop taking it.
I also had a bad day this week when I finally pulled my head out of the sand and asked James how the finances were looking. I wish I was still oblivious. Ouch is a good word. A combination of medical bills, daycare fees, plus all the incidentals from my time in hospital (car parking, petrol, extra expenses etc etc) has hit the hip pocket hard. And I shed a tear about that. And then got a bit angry. We will be fine, all the bills will still get paid (we won't have any savings left though). But it means no little extras at all. I was hoping that we could take the kids away for a few days but that won't happen. I bought some new clothes last week (a total of $70 to get me through winter) and am now regretting that. Stupidly I am craving a nice restaurant meal and was hoping James and I could have a treat but that won't happen either. And then I got annoyed at myself as there are so many people for whom these things aren't even possible anyway. So I should stop complaining. I just get angry when I think how much this has cost us in real terms. But I felt that way about the IVF too.
I have to keep telling myself that I will get better; and then I can go back to work and ease the pressure financially. My goal is to be back at work by the end of the year. Now blobby just needs to co-operate and start behaving!
Wednesday, May 23, 2012
It's all about perspective
I like to read blogs, and recently I came across a blog post by Jenny Lawson "The bloggess". She is a successful American writer, and hilariously funny. The one post that had me in stitches though, also struck a chord on a personal note.
The post "And that's why you should learn to pick your battles" is about how she was going shopping, and her husband, Victor, tells her she had better not buy more towels. So she doesn't. She buys a $100, 5 foot tall (hideously ugly) metal chicken. Victor is not impressed. But she didn't buy towels, so he really shouldn't complain.
Part of Jenny's (and her friend Laura's) justification for buying the chicken (which they called Beyonce) goes thusly:
"me (Jenny): ... And when our friends are sad we can leave him at their front door to cheer them up.
Laura: Exactly. It’ll be like, “You thought *yesterday* was bad? Well, now you have a enormous metal chicken to deal with. Perspective. Now you have it.”"
After I had wiped away the tears of laughter, I decided that I too needed a hideously ugly chicken, for those days when I needed a bit of perspective. Because I know that there is always someone worse off than me. Yes I understand, for a few days there while my brain was happily swelling away, things were pretty bad. And having a brain tumour is pretty sucky, even if it is benign. But I also had a moment when I was waiting for my MRI (I was parked in the emergency room). A family was also waiting with their little boy, and I gathered this wasn't their first MRI or trip to the ER. Perspective.
While we were up home for Easter, I remembered that Dad had received some knick knacks and ornaments as his inheritance from when Grandma passed away. Amongst this was a glass rooster. Ever since it had arrived, Mum had bemoaned this rooster, and how ugly it was. It had languished away in the back of the cupboard for years; and I was going to claim it.
I called him Albert (being a Rooster and all). He came up alright after a quick clean, was carefully transported home, and is now sitting on my buffet. I did briefly wonder if he was worth anything. Without knowing the provenance of the glass (no markings) the best I can hope for, after a quick google search, is that he is made of Murano glass, and that he might be worth about $30 on ebay. Priceless.
So when I am feeling a bit overwhelmed, I just have to look at Albert for a bit of perspective. Because there is nothing like having an ugly glass rooster staring back at you to remind you that things can only get better. Plus he makes me smile, just a little. Maybe he isn't that ugly after all.
The post "And that's why you should learn to pick your battles" is about how she was going shopping, and her husband, Victor, tells her she had better not buy more towels. So she doesn't. She buys a $100, 5 foot tall (hideously ugly) metal chicken. Victor is not impressed. But she didn't buy towels, so he really shouldn't complain.
Part of Jenny's (and her friend Laura's) justification for buying the chicken (which they called Beyonce) goes thusly:
"me (Jenny): ... And when our friends are sad we can leave him at their front door to cheer them up.
Laura: Exactly. It’ll be like, “You thought *yesterday* was bad? Well, now you have a enormous metal chicken to deal with. Perspective. Now you have it.”"
After I had wiped away the tears of laughter, I decided that I too needed a hideously ugly chicken, for those days when I needed a bit of perspective. Because I know that there is always someone worse off than me. Yes I understand, for a few days there while my brain was happily swelling away, things were pretty bad. And having a brain tumour is pretty sucky, even if it is benign. But I also had a moment when I was waiting for my MRI (I was parked in the emergency room). A family was also waiting with their little boy, and I gathered this wasn't their first MRI or trip to the ER. Perspective.
While we were up home for Easter, I remembered that Dad had received some knick knacks and ornaments as his inheritance from when Grandma passed away. Amongst this was a glass rooster. Ever since it had arrived, Mum had bemoaned this rooster, and how ugly it was. It had languished away in the back of the cupboard for years; and I was going to claim it.
I called him Albert (being a Rooster and all). He came up alright after a quick clean, was carefully transported home, and is now sitting on my buffet. I did briefly wonder if he was worth anything. Without knowing the provenance of the glass (no markings) the best I can hope for, after a quick google search, is that he is made of Murano glass, and that he might be worth about $30 on ebay. Priceless.
So when I am feeling a bit overwhelmed, I just have to look at Albert for a bit of perspective. Because there is nothing like having an ugly glass rooster staring back at you to remind you that things can only get better. Plus he makes me smile, just a little. Maybe he isn't that ugly after all.
Sunday, May 20, 2012
Not quite working right
I'm happy to report that I am still improving every day, even if the changes are small. Today I felt very fatigued so I may still be overdoing it. However, now that the crippling fatigue has lifted, I am realising that my brain isn't quite working right. I'm sure there are some of you (like my siblings) that are chuckling away thinking that it has never worked quite right, but I am aware of a few deficits.
Obviously these deficits aren't that obvious. I'm more than able to hold a conversation, write a sentence and so on. But the OT in me has been noticing a few other things.
I am having some issues dealing with too much noise. Almost like a sensory overload. Friday I had a very busy day. I went early to our local shops and had a haircut (my first one in about 8 months thanks to blobby) and then we went to medicare (yet again) and did some other shopping. So I was already tired before I got to the bigger shopping centre. I found the noise just overwhelming, and struggled to focus on too many different things at once. My hearing seemed to drop and I simply couldn't hear very well. It was very strange, and I have noticed it at other times too.
I've also noticed that my memory and recall are terrible. I was aware as I was getting sicker that recalling names was difficult. I completely forgot my nephew's names for a day, and while I was in hospital there were a few days when I couldn't remember Angus' name. I just pointed and said "the boy one". The nursing staff would start their shifts by saying "Hi I'm..." and then walk out and I wouldn't have a clue who they were.
I thought that this had improved, but my memory in general is still a bit affected. But I am also realising that my general planning skills are a bit sketchy too. On Friday, I tried a new recipe for butter chicken. (a new favourite dish; but I hadn't been able to find a recipe to my liking). It was a fairly complicated recipe with lots of ingredients. And I struggled. I had to read it many many times. And then I had to break it down into steps, get all the ingredients out lined up for each step. Read the recipe again. Double check the ingredients. It doesn't sound like much, but it isn't like me to not be able to easily put a recipe together. Of course the fact that I could compensate and do those extra steps means that my brain is working it out, it's just a bit slower than usual. And the butter chicken was delicious!
I'm not overly worried about all of this. More amused, given that the OT bit of my brain is trying to analyse what is happening. I've read about experiencing cognitive deficits alongside the fatigue that occurs so it is hardly surprising. I'm still too tired to do much reading, but I should start doing some puzzles to really get the grey matter working. In the meantime, don't ask me to read a map, put groceries away (James has re-organised the pantry and I cannot yet see the method to his madness) or any other major event planning. I could do it, but it may take a while.
Obviously these deficits aren't that obvious. I'm more than able to hold a conversation, write a sentence and so on. But the OT in me has been noticing a few other things.
I am having some issues dealing with too much noise. Almost like a sensory overload. Friday I had a very busy day. I went early to our local shops and had a haircut (my first one in about 8 months thanks to blobby) and then we went to medicare (yet again) and did some other shopping. So I was already tired before I got to the bigger shopping centre. I found the noise just overwhelming, and struggled to focus on too many different things at once. My hearing seemed to drop and I simply couldn't hear very well. It was very strange, and I have noticed it at other times too.
I've also noticed that my memory and recall are terrible. I was aware as I was getting sicker that recalling names was difficult. I completely forgot my nephew's names for a day, and while I was in hospital there were a few days when I couldn't remember Angus' name. I just pointed and said "the boy one". The nursing staff would start their shifts by saying "Hi I'm..." and then walk out and I wouldn't have a clue who they were.
I thought that this had improved, but my memory in general is still a bit affected. But I am also realising that my general planning skills are a bit sketchy too. On Friday, I tried a new recipe for butter chicken. (a new favourite dish; but I hadn't been able to find a recipe to my liking). It was a fairly complicated recipe with lots of ingredients. And I struggled. I had to read it many many times. And then I had to break it down into steps, get all the ingredients out lined up for each step. Read the recipe again. Double check the ingredients. It doesn't sound like much, but it isn't like me to not be able to easily put a recipe together. Of course the fact that I could compensate and do those extra steps means that my brain is working it out, it's just a bit slower than usual. And the butter chicken was delicious!
I'm not overly worried about all of this. More amused, given that the OT bit of my brain is trying to analyse what is happening. I've read about experiencing cognitive deficits alongside the fatigue that occurs so it is hardly surprising. I'm still too tired to do much reading, but I should start doing some puzzles to really get the grey matter working. In the meantime, don't ask me to read a map, put groceries away (James has re-organised the pantry and I cannot yet see the method to his madness) or any other major event planning. I could do it, but it may take a while.
Thursday, May 10, 2012
Baby steps
After those first few rough days at home, where I really really thought I should be back in hospital, I feel I am making baby steps forward. Today it is a month since I started going downhill. A whole month has passed, some of it in such a blur I have limited recollection of what happened.
But, yesterday I made pikelets for morning tea, and then we went for a walk to the shops (well a wobble). I managed to do some craft with Charlotte in the afternoon. Yesterday I also dropped down the dex dose so I expected today to be a bit harder. And I was dizzier this morning. But again we went to the shops, a friend popped in for a visit, and I managed to make some dessert (microwave self-saucing chocolate pudding, yumm). Charlotte helped too which was very cute.
This is such an improvement on the last few days. The fatigue is still unbelievable. I have no strength. And I am really forcing myself to do things. But baby steps. I am getting very frustrated with myself and really everyone around me so I do need to check that. It will all happen, even if I can't see when.
Also today a letter arrived from my neuro that I need to send to centrelink. We are trying to claim a special entitlement where for 13 weeks the full cost of childcare is covered due to exceptional circumstances. On the one hand I feel bad doing this. We can cover the cost, but it is an expense we wouldn't have had a month ago, and claiming this will make life so much easier and less stressful. And then I read the letter and, wow, it is very sobering. I definitely meet the requirement for "exceptional circumstance". The letter was very clear that I have a neurological impairment and need assistance, he didn't hold back. Now to finish that paperwork!
I have a goal that by next week I can easily walk to the shops without collapsing, and to get through the morning without a nap. And I can feel alot more baking coming on. The OT in me approves, but the weight loss part of me is slightly dismayed. One of the side effects of the meds is a HUGE appetite. I can eat and eat and eat and not feel full. I'm not sure baked goods are necessarily the best things to fill up on but oh well. Tomorrow I think I need some Anzac biscuits, for therapeutic purposes of course.
But, yesterday I made pikelets for morning tea, and then we went for a walk to the shops (well a wobble). I managed to do some craft with Charlotte in the afternoon. Yesterday I also dropped down the dex dose so I expected today to be a bit harder. And I was dizzier this morning. But again we went to the shops, a friend popped in for a visit, and I managed to make some dessert (microwave self-saucing chocolate pudding, yumm). Charlotte helped too which was very cute.
This is such an improvement on the last few days. The fatigue is still unbelievable. I have no strength. And I am really forcing myself to do things. But baby steps. I am getting very frustrated with myself and really everyone around me so I do need to check that. It will all happen, even if I can't see when.
Also today a letter arrived from my neuro that I need to send to centrelink. We are trying to claim a special entitlement where for 13 weeks the full cost of childcare is covered due to exceptional circumstances. On the one hand I feel bad doing this. We can cover the cost, but it is an expense we wouldn't have had a month ago, and claiming this will make life so much easier and less stressful. And then I read the letter and, wow, it is very sobering. I definitely meet the requirement for "exceptional circumstance". The letter was very clear that I have a neurological impairment and need assistance, he didn't hold back. Now to finish that paperwork!
I have a goal that by next week I can easily walk to the shops without collapsing, and to get through the morning without a nap. And I can feel alot more baking coming on. The OT in me approves, but the weight loss part of me is slightly dismayed. One of the side effects of the meds is a HUGE appetite. I can eat and eat and eat and not feel full. I'm not sure baked goods are necessarily the best things to fill up on but oh well. Tomorrow I think I need some Anzac biscuits, for therapeutic purposes of course.
Monday, May 7, 2012
So much harder than I thought
It has been a tough few days home. I naively thought that I could just get back to a normal routine, maybe be a bit tired. Nope. I'm exhausted. I am limited to lying on the couch, shuffling to the kitchen and back. I can't walk up the stairs (well I can but it takes a while). Showering is exhausting. I bent down to get something off the floor and needed help to stand. I'm shocked at how fatigued I am. The dizziness is actually manageable, but then I'm not really moving much so that is no surprise.
It didn't help that the first night home I had 2 hours sleep. Both kids are sick and snuffly and Angus was up half night. Charlotte wet the bed. Coupled with the insomnia that the dex brings, it was a particularly unpleasant night. Last night was alot better.
I know that being in hospital wasn't necessarily helping me recover quicker, but I do wonder if I came home too soon. However the deconditioning I've experienced is scary - I can actually see the divet in my calf where there used to be muscle. I also feel that I was getting a bit too "institutionalised". I was starting to get annoyed at the nurses for not bringing my meds on time. Or when the tea trolley was late (one night I didn't get my pre-bed hot chocolate and that was simply devastating!). And I am struggling a bit to get back into the routine and noise of a household. Those 4 walls were becoming a safe place; and I have craved a bit of peace and quiet these last few days.
I have to remind myself that I am still quite sick. My neuro was quite comfortable to keep me in for a while longer. His parting words were "there really was a lot of swelling, it may take a while to get back to normal". When I got home I had a good look at the MRI. It wasn't a particulary good quality scan (which is annoying as it was a very expensive one!) as they seem to have taken many larger pictures. I think they were checking for bleeds amongst other things. However, I think the doctors weren't quite as upfront with me about the extent of the swelling. They kept saying the tumour was the same, which it is. Still blobby, about 1.8-2cm. And then blobby and the "oedema" extends 2 x 2.2 x 2.2 cm into the brain cavity. eep. Thats about a 10% increase in volume. It is displacing ventricles amongst other things. My neurosurgeon initially said he wouldn't operate until that happened. A few comments were made along the way by various specialists that "surgery wasn't necessary" but maybe I got a bit closer than I realised. Which is a bit scary.
I know I just need to take one day at a time. Baby steps, and just be happy to be home and resting. Mum and James are still doing such a great job with the kids. It will get better, I know it will. Time and more drugs is what I need!
It didn't help that the first night home I had 2 hours sleep. Both kids are sick and snuffly and Angus was up half night. Charlotte wet the bed. Coupled with the insomnia that the dex brings, it was a particularly unpleasant night. Last night was alot better.
I know that being in hospital wasn't necessarily helping me recover quicker, but I do wonder if I came home too soon. However the deconditioning I've experienced is scary - I can actually see the divet in my calf where there used to be muscle. I also feel that I was getting a bit too "institutionalised". I was starting to get annoyed at the nurses for not bringing my meds on time. Or when the tea trolley was late (one night I didn't get my pre-bed hot chocolate and that was simply devastating!). And I am struggling a bit to get back into the routine and noise of a household. Those 4 walls were becoming a safe place; and I have craved a bit of peace and quiet these last few days.
I have to remind myself that I am still quite sick. My neuro was quite comfortable to keep me in for a while longer. His parting words were "there really was a lot of swelling, it may take a while to get back to normal". When I got home I had a good look at the MRI. It wasn't a particulary good quality scan (which is annoying as it was a very expensive one!) as they seem to have taken many larger pictures. I think they were checking for bleeds amongst other things. However, I think the doctors weren't quite as upfront with me about the extent of the swelling. They kept saying the tumour was the same, which it is. Still blobby, about 1.8-2cm. And then blobby and the "oedema" extends 2 x 2.2 x 2.2 cm into the brain cavity. eep. Thats about a 10% increase in volume. It is displacing ventricles amongst other things. My neurosurgeon initially said he wouldn't operate until that happened. A few comments were made along the way by various specialists that "surgery wasn't necessary" but maybe I got a bit closer than I realised. Which is a bit scary.
I know I just need to take one day at a time. Baby steps, and just be happy to be home and resting. Mum and James are still doing such a great job with the kids. It will get better, I know it will. Time and more drugs is what I need!
Friday, May 4, 2012
Some thoughts on mothering
Having the time in here has made me reflect on being a mother. Before this deterioration (I'm not quite sure how to refer to these past few weeks and I guess deterioration sounds about right) I was struggling. I had soldiered on through the radiation, and really it was a bit tough.
But I was finding being a mother tough. Charlotte's behaviour was - challenging. I know it is normal. She is asserting her independence. Trying new things, pushing boundaries. But it was wearing. Angus was also going through a tough time with wanting to be picked up. He had started squealing, chucking little tantrums (seriously anyone who thinks the terrible twos actually happen at two needs to come live at my house!). He would literally bang his head on the floor, then look at me for that reaction.
So my response was to put the TV on. Let them watch cartoons if they want. Of course I was still trying to do things with them. Charlotte was playing more games - "What's the time Mr Wolf" is a favourite at the moment, as is hide and go seek. Playdough is still fun but is draining as I have to run interference with Angus trying to eat it. Blocks are a favourite for Angus although he is so much happier playing by himself than Charlotte ever is/was.
And I felt guilty. I've needed a daily nap for months now and that guilt - especially relying on James, has eaten me up. The housework slipped. And all of this made me feel like I was the worst mother in the world. Simply because my children were watching TV, or because I wasn't engaging with them constantly. Truthfully I wasn't enjoying the days at all. This just ate me up inside. I still think it's a hangover from the IVF, but I wanted these kids so bad. Surely I should treasure every minute of every day and want to engage with them?
Then I was admitted, and I have seen them for an hour at a time, every day or two (they havent' come in every day as it gets a bit much for them).
And they are doing fine. Angus' language has exploded. Charlotte's behaviour has improved dramatically and she is suddenly doing so much for herself. Whether these things would have happened with me being around I can't say; I am trying not to think that they have thrived without me being around, but I don't think that they have been irreparably harmed.
I know when I go home I can't run around with them. It will take time before I have the strength to even go for a walk to the park, let alone really just play. But I am going to go home with a new confidence in my mothering. Because it doesn't matter if they watch TV. As long as I am there with them to guide them, to teach the little things, to offer cuddles (Angus has gotten really cuddly now) that is what important. The little things that make up a day are what matters. Being a mum is frustrating, draining, sometimes (often) unrewarding. I want to try to find that one moment in each day that makes all of those hard parts worthwhile. And if that means watching playschool together, then that is what it will take.
I need to shake off this mother guilt. I know it isn't that easy, but there are so many other things I can feel guilty about (too much red wine maybe?). I know I'm not alone in this - so what is your irrational mothers guilt?
But I was finding being a mother tough. Charlotte's behaviour was - challenging. I know it is normal. She is asserting her independence. Trying new things, pushing boundaries. But it was wearing. Angus was also going through a tough time with wanting to be picked up. He had started squealing, chucking little tantrums (seriously anyone who thinks the terrible twos actually happen at two needs to come live at my house!). He would literally bang his head on the floor, then look at me for that reaction.
So my response was to put the TV on. Let them watch cartoons if they want. Of course I was still trying to do things with them. Charlotte was playing more games - "What's the time Mr Wolf" is a favourite at the moment, as is hide and go seek. Playdough is still fun but is draining as I have to run interference with Angus trying to eat it. Blocks are a favourite for Angus although he is so much happier playing by himself than Charlotte ever is/was.
And I felt guilty. I've needed a daily nap for months now and that guilt - especially relying on James, has eaten me up. The housework slipped. And all of this made me feel like I was the worst mother in the world. Simply because my children were watching TV, or because I wasn't engaging with them constantly. Truthfully I wasn't enjoying the days at all. This just ate me up inside. I still think it's a hangover from the IVF, but I wanted these kids so bad. Surely I should treasure every minute of every day and want to engage with them?
Then I was admitted, and I have seen them for an hour at a time, every day or two (they havent' come in every day as it gets a bit much for them).
And they are doing fine. Angus' language has exploded. Charlotte's behaviour has improved dramatically and she is suddenly doing so much for herself. Whether these things would have happened with me being around I can't say; I am trying not to think that they have thrived without me being around, but I don't think that they have been irreparably harmed.
I know when I go home I can't run around with them. It will take time before I have the strength to even go for a walk to the park, let alone really just play. But I am going to go home with a new confidence in my mothering. Because it doesn't matter if they watch TV. As long as I am there with them to guide them, to teach the little things, to offer cuddles (Angus has gotten really cuddly now) that is what important. The little things that make up a day are what matters. Being a mum is frustrating, draining, sometimes (often) unrewarding. I want to try to find that one moment in each day that makes all of those hard parts worthwhile. And if that means watching playschool together, then that is what it will take.
I need to shake off this mother guilt. I know it isn't that easy, but there are so many other things I can feel guilty about (too much red wine maybe?). I know I'm not alone in this - so what is your irrational mothers guilt?
Wednesday, May 2, 2012
On coming home
So today has been a good day. I didn't need any anti-nausea meds this morning, although the shower was tiring as usual. I managed to sit up for a while this morning and feel quite good now. My thoughts are all about coming home.
My doctors have been very relaxed about this - they think it is up to me. Last night when I saw my neuro (he keeps late hours) he said "you will be unwell when you go home, so it is up to you. You can always come back". hmmm. Don't plan on coming back. Mum and James would like me to stay in until I can handle the kids. It is too hard to just sit still and tell them that Mummy can't get up.
But my mummy guilt is wracking me. I feel like I should just suck it up and get home. Just deal with it. I am still really struggling with this concept of how sick I am. You may have noticed that I've never really dealt with the whole fact that I have a brain tumour. I've preferred to think that it could be worse, that others have it worse, so I just need to get on with life. Which is fine. And I know you are all yelling at me that it is pretty bad. And I am slowly accepting that. I think soldiering on through the radiation was fine, but it has taken it's toll.
So I am still in this conundrum of coming home. It helps that today has been such a good day. Today was the first time I felt that I could actually cope. I will see how I go tomorrow and if I have another good day then I will try for Friday. I am seriously getting over the hospital routine (still ok with the food though although I would kill for a home made pizza and a glass of wine but that won't happen for a while with the drugs I'm on).
And I've received so many birthday messages today which has been lovely. We had a little "party" in the room this afternoon with some cake and some fake bubbly. Angus devoured the cake, Charlotte had some fun, it was nice. I feel very loved today.
My doctors have been very relaxed about this - they think it is up to me. Last night when I saw my neuro (he keeps late hours) he said "you will be unwell when you go home, so it is up to you. You can always come back". hmmm. Don't plan on coming back. Mum and James would like me to stay in until I can handle the kids. It is too hard to just sit still and tell them that Mummy can't get up.
But my mummy guilt is wracking me. I feel like I should just suck it up and get home. Just deal with it. I am still really struggling with this concept of how sick I am. You may have noticed that I've never really dealt with the whole fact that I have a brain tumour. I've preferred to think that it could be worse, that others have it worse, so I just need to get on with life. Which is fine. And I know you are all yelling at me that it is pretty bad. And I am slowly accepting that. I think soldiering on through the radiation was fine, but it has taken it's toll.
So I am still in this conundrum of coming home. It helps that today has been such a good day. Today was the first time I felt that I could actually cope. I will see how I go tomorrow and if I have another good day then I will try for Friday. I am seriously getting over the hospital routine (still ok with the food though although I would kill for a home made pizza and a glass of wine but that won't happen for a while with the drugs I'm on).
And I've received so many birthday messages today which has been lovely. We had a little "party" in the room this afternoon with some cake and some fake bubbly. Angus devoured the cake, Charlotte had some fun, it was nice. I feel very loved today.
Tuesday, May 1, 2012
A good reason for not posting
Sorry I haven't updated
in a while – I have a good reason. We had a lovely Easter away, and
I felt a bit better. However that week home the nausea and fatigue
increased significantly. The Sat after Easter I woke up and the room
was spinning. The next few days got gradually worse and I got to the
point where I couldn’t stop vomiting. I was pretty desperate, I
tried every drug I had and even some acupuncture (which suffice to
say didn't work). I was nauseas, dizzy, had double vision,
blurriness, and simply couldn’t move without vomiting. I also had a
bad nystagmus, where the eyeball just flicks around involuntarily
which was very unpleasant.
On the Wednesday I
managed to see my specialist who admitted me to hospital. I had a
rough night that first night. They had me on fluids but not much
else, and nothing much was happening. The next morning I was a wreck
and thankfully had a wonderful nurse who sat with me while I sobbed
away and she got things happening. She spoke to my neuro-surgeon who
ordered an MRI, my ENT, and an ophthalmologist review. They started
me on dexamethasone, a very strong steroid, as they thought that
there was swelling in the brain.
By the next day they
had started me on epilim, an anti-convulsant, and I had seen a
neurologist too. The Ophthalmologist cleared my optic nerve of damage
which was a relief, and the MRI showed no bleeds but a lot of
swelling. They all seemed a bit unsure what was happening – maybe
swelling, maybe a migraine. Nevertheless, I was sick. At that point I
was convinced I could come home once the drugs kicked in, but that
didn't happen. The neurologist said it could take a week or a month
and I was in shock. However over the weekend I deteriorated a bit
more. I would wake up around 4am and start vomiting. I couldn't walk.
I couldn't move my head.
Slowly things improved
and by Monday I was starting to see some difference. It wasn't until
the Wednesday that I could actually move without being nauseas. It
was at that point I realised how sick I was, and sadly, that I had a
long way to go.
From there it was just
gradual improvements. Mornings are terrible – I get so exhausted
just having a shower. But by evening the drugs have kicked in and I
feel better I haven't been able to read or do too much until now so
even if I had the internet I couldn't do too much. They doctors (I
have seen 7 now) are still unsure what is happening. But the
consensus is that there is swelling, probably from the radiation, or
the tumour, or something. And that it would take time (weeks to
months).
Right now I am torn
when I come home. I am still so tired. I would need to rest and rest.
I'm taking it one day at a time.
Wednesday, April 4, 2012
The lows of rehabiliation
I'm still here, I just haven't had the writing mojo lately. After being so excited to be beyond what I thought was the time frame for further radiation symptoms, these past few weeks have been hard.
Two weeks ago I went to the UQ Neurology and Balance clinic. They did all sorts of test like making me stand with my eyes closed, walk with my eyes closed, move my head back and forth and so on. All of the things I have been avoiding for the past few months. I scored well on these tests. However, I scared myself. I was working very hard to stay upright, to keep moving. Subjectively, the dizziness was severe. And I paid for it the next day - I was simply exhausted. I also felt overwhelmed, demoralised, and dejected. I don't feel like I've really recovered since then.
I am supposed to do head turning exercises and walking up to 5 times a day. I simply don't have that time with the kids around. Nor do I feel like I have the energy. After one week (which was already busy as it was Angus' birthday week and party) I couldn't see any improvement. The next physio session was just as challenging, however the next day I didn't feel quite as shattered. Since then I think I can see some improvement.
Then on the weekend I had another setback. I developed an intense pain in my ear and at the base of my skull - just where blobby is. I could feel a real pressure sensation in my ear. Sunday morning I started vomiting so of course my paranoia levels went into overdrive (given that vomiting can be a sign of increasing intracranial pressure). We found a GP to just check my ears for signs of an infection, which was negative. I was then left with the option of going up to emergency, or just waiting it out. Thankfully the pain eased. However it is still there. An offhand comment from a friend has made me wonder if it is actually musculoskeletal from the exercises, so I have decided to give them a rest and see if it improves.
I hate this paranoia. I am scared about everything. Another friend did put this into perspective though - I had some symptoms which no-one thought were serious and it turned out to be a brain tumour. Of course I'm going to be paranoid about any twinge or niggle.
Right now I feel I'm in the doldrums a bit. I can't see that my symptoms will improve. I don't know if or when I will feel comfortable with blobby being there. I know I need to work on my new "normal" but I'm not ready to do that yet. I am actually more fatigued now than a few weeks ago, so I'm not sure if the radiation is still affecting me, or whether this is just how I'm going to be. I still feel like I'm "sick", which I hate.
I'm hoping that some fun easter activities we have planned will break this cycle. One silver lining I can take from this is that my empathy as a health professional will have increased dramatically. I can now truly appreciate how hard rehabilitation is (not that I didn't realise before, but it is different from the patients side).
Two weeks ago I went to the UQ Neurology and Balance clinic. They did all sorts of test like making me stand with my eyes closed, walk with my eyes closed, move my head back and forth and so on. All of the things I have been avoiding for the past few months. I scored well on these tests. However, I scared myself. I was working very hard to stay upright, to keep moving. Subjectively, the dizziness was severe. And I paid for it the next day - I was simply exhausted. I also felt overwhelmed, demoralised, and dejected. I don't feel like I've really recovered since then.
I am supposed to do head turning exercises and walking up to 5 times a day. I simply don't have that time with the kids around. Nor do I feel like I have the energy. After one week (which was already busy as it was Angus' birthday week and party) I couldn't see any improvement. The next physio session was just as challenging, however the next day I didn't feel quite as shattered. Since then I think I can see some improvement.
Then on the weekend I had another setback. I developed an intense pain in my ear and at the base of my skull - just where blobby is. I could feel a real pressure sensation in my ear. Sunday morning I started vomiting so of course my paranoia levels went into overdrive (given that vomiting can be a sign of increasing intracranial pressure). We found a GP to just check my ears for signs of an infection, which was negative. I was then left with the option of going up to emergency, or just waiting it out. Thankfully the pain eased. However it is still there. An offhand comment from a friend has made me wonder if it is actually musculoskeletal from the exercises, so I have decided to give them a rest and see if it improves.
I hate this paranoia. I am scared about everything. Another friend did put this into perspective though - I had some symptoms which no-one thought were serious and it turned out to be a brain tumour. Of course I'm going to be paranoid about any twinge or niggle.
Right now I feel I'm in the doldrums a bit. I can't see that my symptoms will improve. I don't know if or when I will feel comfortable with blobby being there. I know I need to work on my new "normal" but I'm not ready to do that yet. I am actually more fatigued now than a few weeks ago, so I'm not sure if the radiation is still affecting me, or whether this is just how I'm going to be. I still feel like I'm "sick", which I hate.
I'm hoping that some fun easter activities we have planned will break this cycle. One silver lining I can take from this is that my empathy as a health professional will have increased dramatically. I can now truly appreciate how hard rehabilitation is (not that I didn't realise before, but it is different from the patients side).
Saturday, December 3, 2011
More things you don't want to hear...
I wrote a post ages ago about things you don't want to hear when you are going through IVF. Well I can now write one about dealing with a brain tumour. It has taken me a staggeringly short amount of time to become annoyed at peoples responses and also what people say in general.
A saying that is very common is "Two words you don't want to hear...". I've used it myself when I wrote about the threatened miscarriage. Tonight I heard it on the news. "Two words you don't want to hear is...seafood shortage". Umm really? A friend recently posted on facebook "Two words you don't want to hear is...upgrade declined". Umm wow. How about two words you don't want to hear is brain tumour! I'm really struggling with that emotion - people are entitled to their first world problems, but escalating a first world problem such as lack of seafood to the same status as blobby doesn't sit well with me.
Another thing I'm struggling with is people saying "Oh good that it's benign". Yes it is very good that it is benign. It means that it hasn't spread to other areas. But it doesn't mean harmless. It is still pressing on vital brain structures. We can't just leave it there. I will probably still need really big surgery and treatment to get rid of it. Yes I know I'm so lucky it isn't malignant but gee whiz, I don't see it as "good that it is benign". Good would be not having it in the first place.
I'm sure there will be more sayings as time goes on that push those buttons so I should learn to deal with them. Maybe that is two words I should learn - more patience.
A saying that is very common is "Two words you don't want to hear...". I've used it myself when I wrote about the threatened miscarriage. Tonight I heard it on the news. "Two words you don't want to hear is...seafood shortage". Umm really? A friend recently posted on facebook "Two words you don't want to hear is...upgrade declined". Umm wow. How about two words you don't want to hear is brain tumour! I'm really struggling with that emotion - people are entitled to their first world problems, but escalating a first world problem such as lack of seafood to the same status as blobby doesn't sit well with me.
Another thing I'm struggling with is people saying "Oh good that it's benign". Yes it is very good that it is benign. It means that it hasn't spread to other areas. But it doesn't mean harmless. It is still pressing on vital brain structures. We can't just leave it there. I will probably still need really big surgery and treatment to get rid of it. Yes I know I'm so lucky it isn't malignant but gee whiz, I don't see it as "good that it is benign". Good would be not having it in the first place.
I'm sure there will be more sayings as time goes on that push those buttons so I should learn to deal with them. Maybe that is two words I should learn - more patience.
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