I am on 0.25mg. I am so close to being off the dex. After feeling so sick earlier in the month, I decided to just drop my dose even though I wasn't feeling great. I just want to be done with this drug. Usually it takes a few days after I drop the dose for me to begin feeling better, although some drop downs have been easier than others. I managed quite well going from .75 to 0.5mg. This drop down to 0.25mg has been a bit harder.
It was probably made a bit harder because of all the anxiety surrounding the last few days. The wild weather and flooding we have experienced has been a worry. I kept looking at the holes where our skylights should be and hoping that the tarps would hold. Fortunately, they did and we survived unscathed. However all this extra stress does screw around with my adrenaline levels and so once again I crashed hard. Monday I slept for much of the day and I've been extremely fatigued since. I've read that it may take up to a year for my body to be able to respond appropriately to stressful events, so I just need to be mindful of how these things affect me.
So I am determined to get off the dex. I will give myself at least another week before stopping it altogether. In just over a week it will be one year since I had my radiation. I would like to be off the dex then but I will see how I feel. This last step is scary. I am anxious that the swelling will return. I am anxious that I will continue to be tired and nauseous. But until I get to that point I just won't know.
Wednesday, January 30, 2013
Wednesday, January 16, 2013
A bit of a bad week
I don't often share all the bad times. I tend to have a bad day at least once every week or so. In the last few months that has improved tremendously, and I might just have a bad morning that an afternoon nap fixes, or just one day that is bad but some really good ones after that. Unfortunately I seem to have had a bad week. I'm not quite sure what set me off. I have probably overdone it. We had all the excitement of Charlotte's birthday and her birthday party. I felt like I was running on adrenaline for a couple of days. This isn't as good as it sounds as the dex. can play havoc with my normal cortisol/adrenaline levels so feeling a bit overstressed can really muck it up further. I also decided last week to increase my exercise and tried to do some running.
By Thursday I was a wreck. Thankfully it was a daycare day so once they were packed off I slept, then lay on the couch, then slept some more, more couch time - you get the picture. I also decided to drop a dose of the dex which may have been a bit silly. Friday I dragged myself to the gym for a light workout but I was still feeling awful. Nothing obvious, just more fatigued than usual, more nauseous, dizzier. I also had an earache which probably sounds like a small thing. However, just before I was admitted in April, I had an earache from the swelling so I now associate that with tumour swelling.
We managed to do some things on the weekend - shopping, catching up with friends, some swims in the pool (I find being in the pool very therapeutic), but I wasn't feeling any better. On Monday I tried to tackle some housework which had drastically taken a backseat. I bent down and popped a muscle in my thigh. Which was odd, and extremely painful. A few hours later I did it again in my calf which was excruciating. I then spent the next few hours getting myself very anxious about why I was suddenly having muscle spasms/cramps. Dr Google got a workout. My paranoia was in overdrive. Did I have low potassium? Was it low because I had cushings syndrome? Did I have a muscle myopathy? Was it a DVT? And around I went. And yes, I then sat and cried. It is times like this that I realise that I am sick; that other people don't have to worry about these things. It took a phone call to my Mum for a sanity check to calm me down a bit, otherwise I was all keen to go up to the hospital. I more than likely had low potassium or sodium but due to the heat, and not anything sinister. So James cooked up a delicious meal packed with things that contained potassium (sundried tomatoes are remarkably high in potassium and very yummy in a pasta dish too), and I had an early night as I was simply exhausted.
Today I am feeling so much better. This has been the longest time I've felt so unwell for quite some time. I have to keep reminding myself that I am a squillion times better than I was 7 months ago when I was admitted, however it is scary feeling this sick. And it is overwhelming when you are trying to take care of the kids, do housework and so on. I had wanted to take the kids out today, but we had another quiet day at home. Quiet if you don't count making muffins, cleaning out cupboards, playing games, making a rocket ship picture, doing some washing, separating screaming/fighting children, and having a swim. But I do intend to have a quiet one tomorrow. And after a terrible week, I am still on the lower dose of dex too - 0.75mg and on the way down, although I might just wait a bit before trying that again.
By Thursday I was a wreck. Thankfully it was a daycare day so once they were packed off I slept, then lay on the couch, then slept some more, more couch time - you get the picture. I also decided to drop a dose of the dex which may have been a bit silly. Friday I dragged myself to the gym for a light workout but I was still feeling awful. Nothing obvious, just more fatigued than usual, more nauseous, dizzier. I also had an earache which probably sounds like a small thing. However, just before I was admitted in April, I had an earache from the swelling so I now associate that with tumour swelling.
We managed to do some things on the weekend - shopping, catching up with friends, some swims in the pool (I find being in the pool very therapeutic), but I wasn't feeling any better. On Monday I tried to tackle some housework which had drastically taken a backseat. I bent down and popped a muscle in my thigh. Which was odd, and extremely painful. A few hours later I did it again in my calf which was excruciating. I then spent the next few hours getting myself very anxious about why I was suddenly having muscle spasms/cramps. Dr Google got a workout. My paranoia was in overdrive. Did I have low potassium? Was it low because I had cushings syndrome? Did I have a muscle myopathy? Was it a DVT? And around I went. And yes, I then sat and cried. It is times like this that I realise that I am sick; that other people don't have to worry about these things. It took a phone call to my Mum for a sanity check to calm me down a bit, otherwise I was all keen to go up to the hospital. I more than likely had low potassium or sodium but due to the heat, and not anything sinister. So James cooked up a delicious meal packed with things that contained potassium (sundried tomatoes are remarkably high in potassium and very yummy in a pasta dish too), and I had an early night as I was simply exhausted.
Today I am feeling so much better. This has been the longest time I've felt so unwell for quite some time. I have to keep reminding myself that I am a squillion times better than I was 7 months ago when I was admitted, however it is scary feeling this sick. And it is overwhelming when you are trying to take care of the kids, do housework and so on. I had wanted to take the kids out today, but we had another quiet day at home. Quiet if you don't count making muffins, cleaning out cupboards, playing games, making a rocket ship picture, doing some washing, separating screaming/fighting children, and having a swim. But I do intend to have a quiet one tomorrow. And after a terrible week, I am still on the lower dose of dex too - 0.75mg and on the way down, although I might just wait a bit before trying that again.
Sunday, January 6, 2013
A blobby update
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!
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!
Sunday, December 30, 2012
Not quite a resolution
It is the end of another year. One that I can say has been quite tough. I have found myself, like many others, wishing for a better 2013. Which really is a strange thing to do. Tomorrow the sun will come up, and another day will start, that won't be too much different to today. Just because a new calender year has begun it doesn't mean that the hurts, trials and tribulations of the previous year go away or stop being an issue.
Nevertheless, I do wish for an easier 2013. I say most years that I don't do New Years Resolutions. However, the start of a new calender year does make a convenient time to revisit goals, and make plans for the months ahead. So here are my not quite resolutions for the coming year:
So whatever may have happened in 2012, I hope that you can look forward to what may come in the New Year!
Nevertheless, I do wish for an easier 2013. I say most years that I don't do New Years Resolutions. However, the start of a new calender year does make a convenient time to revisit goals, and make plans for the months ahead. So here are my not quite resolutions for the coming year:
- Get off the dex: Over the last month, I have managed to drop my dex dose down to 1mg. I am really happy about this, but it has been tough. The nausea, fatigue and dizzy spells have been very taxing. But I managed, and at a time when we have been particularly busy too. The dex has been a bit of a mental crutch for me (I feel that without it my brain will swell, that I can't cope and so on) but now that I feel more stable I need to do without it. The side effects are terrible. I feel like the old woman who swallowed a fly in that I am taking medication after medication to combat the side effects. Also I need to discover what I am like without the dex as I don't know what my symptoms are following the radiation. In the first week of January I will drop down another dose, with the hope that I will be completely off it by the end of February.
- Lose some weight: 10 kg to be specific. Which is alot. I have been blaming the dex for this weight gain, and it has played a large part. However I can't blame the dex for what I put in my mouth. I've still been managing to go to the gym once or twice a week so I need to increase that slightly. Strangely, I am having urges to start running. In the past I have only ever run to catch transport, or to chase children. However last week I hopped onto the treadmill and spent 5 minutes running (ok, ambulating along at a slightly higher speed than walking is a more accurate description) and I felt ok. Until I stopped, then blobby went a bit spacko and let me know he didn't like it. So I might not do the treadmill again, but I might consider going for a jog. I think I like that I can set a clear goal (eg. run 5km) and work towards that. Irrespective, I need to focus on eating healthy and moving more.
- Go back to work: I have been talking about this for such a long time. Being an OT is so important to me, it is part of my identity. As much as I have enjoyed not being at work, I need that mental stimulation as well as that sense of satisfaction that being part of the workforce gives one. Not to mention the finances desperately need a boost! However returning to work scares me. I don't want to do it until I am off the dex. And I am still so tired at the moment that I worry I wouldn't cope. And then there is the daunting part of actually finding a new job. But I hope that by March I will be medication free, feeling stronger, and looking for work.
- Be more present for friends: I feel that I have let a lot of our friends down this year. I have spent so long worrying about myself that I haven't been there for others. And for this I am sorry. So next year there will be more playdates, more catchups and messages sent!
So whatever may have happened in 2012, I hope that you can look forward to what may come in the New Year!
Monday, December 3, 2012
Best not to taunt the universe
I haven't posted for quite a while, for a number of reasons. One is I've been giving my brain a bit of a break and a rest from some things (like thinking), another is that we have been so busy. So time for a catch up.
About 3 weeks ago James went overseas for business. I actually coped quite well on my own. I managed without a nap, the kids got fed, the house stayed clean. I even managed to dispose of a dead fruitbat I discovered in our garden and no less than 3 spiders! The saturday before James came home I was feeling pretty exhausted. That day began a series of storm cells that rolled across Queensland. I was quite anxious about these as we have a large gumtree next to our house and I am just terrified it will fall down in a storm. I survived that night (thanks to a friend who chatted to me online just about stuff, she kept me from losing it entirely!) and so I may have posted a status on facebook along the lines of "Come on universe, what else can you throw at me?!". Perhaps I should not have taunted the universe so boldly.
Sunday morning arrived and another storm rolled through, but it was all ok as James came home not long afterwards. That evening we were preparing a yummy dinner of homemade pizza (I've probably said it before but James really makes the best homemade pizza's) and I was watching the weather radar. A severe thunderstorm was coming directly towards us, but we didn't expect too much. Maybe some wind, and a bit of rain. I went up to close the windows upstairs and stood at our back window to watch for a few minutes. I heard a roar like a train, and realised that that was the storm coming. After another few seconds of watching, a few choice expletives were issued, and I grabbed the kids and ran downstairs. The hail hit a few seconds later but I was huddling with the kids in our front entrance way (I had thoughts of standing under doorways, away from windows etc). Which was a good thing as a few seconds later our skylights broke. Glass, hail, rain and debris started flying around. To say I was terrified was an understatement. Within 15 minutes it was all over although it felt like so much longer.
We popped outside to see the damage, as did all the neighbours. Our wonderful neighbours across the road called out if we were ok, which we weren't really, so they came over to help. Sadly I have to admit being in a bit of shock, but they were wonderful. They looked after the kids while James and I cleaned up the glass and water. We had debris everywhere. all over the kitchen bench (and sadly dinner. Pizza which you have to pull glass out of is not much fun), and I was worried about water damage as we had water everywhere.
Thankfully the rain stopped that night, as we were left with huge gaping holes in our roof. Even though we called the SES immediately (such a wonderful organisation) they didn't arrive until 11pm the next day to tarp our roof. Unfortunately they couldn't remove the remaining shards of glass so we had to get the insurers "make safe" team to do that the next day. That was an incredibly stressful time, knowing that shards of glass were dangling above our heads.
In terms of other damage, it was extensive. Roof tiles cracked, pergola roof damaged, rainwater pipes shattered, gutters bent out of shape, air conditioning units shattered, bathroom window broken. And then there were all of the kids toys outside as well as so many little things like my pegs and peg bucket. Not to mention the damage inside the house as water flooded the kitchen and a lightning strike just up the road shorted out a few things. It was almost like someone had taken a machine gun and peppered the house. The garden was a sight, and all up and down the street the damage was the same. We were lucky in that only one window had broken - many houses in our street have had several windows broken. And yet, one street back, there are houses with no damage at all. All of our damage was caused by hail and rain. Our big imposing gum tree is still standing. We didn't even lose one branch!
Two weeks on and I have no idea when all this will be repaired. We finally had the bathroom window fixed today. We have had two insurance assessors already as the damage is so extensive. In the meantime, I dread any the onset of more rain on our tarped roof. And without proper insulation the house is so hot. We finally turned on the ducted air conditioning yesterday as we couldn't stand the heat (it was nearly 30 degrees inside the kitchen) and so far it hasn't exploded! I know we aren't alone in having to deal with this, but I do wish that we didn't have to. I am constantly looking at the house wondering if there is more damage we have missed. I am grateful for insurance, and so far, they have been good (we have had the contents approved which is good, we can now replace the kids toys and things like the toaster which got water all through it).
I do however promise to not taunt the universe again. I'm not saying that you win mind you, but let's just call a bit of a truce.
About 3 weeks ago James went overseas for business. I actually coped quite well on my own. I managed without a nap, the kids got fed, the house stayed clean. I even managed to dispose of a dead fruitbat I discovered in our garden and no less than 3 spiders! The saturday before James came home I was feeling pretty exhausted. That day began a series of storm cells that rolled across Queensland. I was quite anxious about these as we have a large gumtree next to our house and I am just terrified it will fall down in a storm. I survived that night (thanks to a friend who chatted to me online just about stuff, she kept me from losing it entirely!) and so I may have posted a status on facebook along the lines of "Come on universe, what else can you throw at me?!". Perhaps I should not have taunted the universe so boldly.
Sunday morning arrived and another storm rolled through, but it was all ok as James came home not long afterwards. That evening we were preparing a yummy dinner of homemade pizza (I've probably said it before but James really makes the best homemade pizza's) and I was watching the weather radar. A severe thunderstorm was coming directly towards us, but we didn't expect too much. Maybe some wind, and a bit of rain. I went up to close the windows upstairs and stood at our back window to watch for a few minutes. I heard a roar like a train, and realised that that was the storm coming. After another few seconds of watching, a few choice expletives were issued, and I grabbed the kids and ran downstairs. The hail hit a few seconds later but I was huddling with the kids in our front entrance way (I had thoughts of standing under doorways, away from windows etc). Which was a good thing as a few seconds later our skylights broke. Glass, hail, rain and debris started flying around. To say I was terrified was an understatement. Within 15 minutes it was all over although it felt like so much longer.
We popped outside to see the damage, as did all the neighbours. Our wonderful neighbours across the road called out if we were ok, which we weren't really, so they came over to help. Sadly I have to admit being in a bit of shock, but they were wonderful. They looked after the kids while James and I cleaned up the glass and water. We had debris everywhere. all over the kitchen bench (and sadly dinner. Pizza which you have to pull glass out of is not much fun), and I was worried about water damage as we had water everywhere.
Thankfully the rain stopped that night, as we were left with huge gaping holes in our roof. Even though we called the SES immediately (such a wonderful organisation) they didn't arrive until 11pm the next day to tarp our roof. Unfortunately they couldn't remove the remaining shards of glass so we had to get the insurers "make safe" team to do that the next day. That was an incredibly stressful time, knowing that shards of glass were dangling above our heads.
In terms of other damage, it was extensive. Roof tiles cracked, pergola roof damaged, rainwater pipes shattered, gutters bent out of shape, air conditioning units shattered, bathroom window broken. And then there were all of the kids toys outside as well as so many little things like my pegs and peg bucket. Not to mention the damage inside the house as water flooded the kitchen and a lightning strike just up the road shorted out a few things. It was almost like someone had taken a machine gun and peppered the house. The garden was a sight, and all up and down the street the damage was the same. We were lucky in that only one window had broken - many houses in our street have had several windows broken. And yet, one street back, there are houses with no damage at all. All of our damage was caused by hail and rain. Our big imposing gum tree is still standing. We didn't even lose one branch!
Two weeks on and I have no idea when all this will be repaired. We finally had the bathroom window fixed today. We have had two insurance assessors already as the damage is so extensive. In the meantime, I dread any the onset of more rain on our tarped roof. And without proper insulation the house is so hot. We finally turned on the ducted air conditioning yesterday as we couldn't stand the heat (it was nearly 30 degrees inside the kitchen) and so far it hasn't exploded! I know we aren't alone in having to deal with this, but I do wish that we didn't have to. I am constantly looking at the house wondering if there is more damage we have missed. I am grateful for insurance, and so far, they have been good (we have had the contents approved which is good, we can now replace the kids toys and things like the toaster which got water all through it).
I do however promise to not taunt the universe again. I'm not saying that you win mind you, but let's just call a bit of a truce.
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| The storm in progress |
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| We really shouldn't be able to see the sky |
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| The aftermath out the front. Hail and shredded plants |
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| Skylights tarped but still rather unsafe |
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!
Monday, October 15, 2012
Lowering my expectations
It has been a busy few weeks filled with lots of things. Mum and Dad came down for a few days, James and I went to a dear friends wedding (and had a luxurious night out at a hotel in the city), James did his 100km (and a bit more) bike ride, the kids went back to swimming, just general life stuff.
And the last few weeks have been tough. Really tough. And then good for a few days, and then tough again. I have been doing an awful lot of thinking about where I am at now, and have realised that I need to lower my expectations. I tried going to the gym 4 days a week, and was shattered. We have gone out to social events and I feel fine there, until I come home and my brain shuts down and I need to sleep. I still can't hold a normal conversation with people - I ramble, it takes me longer to process what was said just a few seconds ago, I forget words, it is hard work.
I have realised that I am about 75-80% back to "normal" and that I am simply not improving. I have plateaued. However I don't know if I am ever going to get better. The trouble is I simply don't know what to expect. I did quite a bit of research leading up to my treatment, and about the dex and so on, but not what to expect 9 months later. I simply expected that I would be living life as normal. And I am far from that. So I have begun to look for people's stories and experiences and research (limited as it is) etc that can give me some guidance. What I have learnt is that everyone's brain tumour journey is different. Some people have surgery and bounce back straight away, others, like me, are still struggling months on. And I have finally learnt to shed the stigma I've attached to the word "benign" as my disease progress now is pretty similar to any other type of tumour (except I don't need chemo).
So I have lowered my expectations. I am still going to the gym 3 days a week which I am enjoying. After talking with James I have to accept that returning to work anytime soon just isn't going to happen. I am learning to like the dex. From what I have read, it appears that my type of tumour can swell on and off quite a bit so trying to manage that is going to be an ongoing thing. Today I increased my dosage again as I have had a terrible few days (I nearly went up to the hospital yesterday as something just felt wrong, I was as nauseous and dizzy as just before I was last admitted, but today I feel good). I have a lot to discuss with my neuro when I see him next about how we manage this. And I've accepted that I need help to work through these emotions so I have scheduled a session with a counsellor at the Cancer Council (they offer free sessions).
It has been quite an emotional few days coming to this point. I am still being optimistic, I know I am so much better than I was a few months ago. But hitting this plateau is very frustrating. It doesn't help that I am coming up to my next MRI (next week) and this is playing on my mind.
In the meantime, I am continuing to fill up our days with life stuff. Cleaning, baking, swimming lessons, birthday parties, kids getting sick, doing projects around the house, just life stuff.
And the last few weeks have been tough. Really tough. And then good for a few days, and then tough again. I have been doing an awful lot of thinking about where I am at now, and have realised that I need to lower my expectations. I tried going to the gym 4 days a week, and was shattered. We have gone out to social events and I feel fine there, until I come home and my brain shuts down and I need to sleep. I still can't hold a normal conversation with people - I ramble, it takes me longer to process what was said just a few seconds ago, I forget words, it is hard work.
I have realised that I am about 75-80% back to "normal" and that I am simply not improving. I have plateaued. However I don't know if I am ever going to get better. The trouble is I simply don't know what to expect. I did quite a bit of research leading up to my treatment, and about the dex and so on, but not what to expect 9 months later. I simply expected that I would be living life as normal. And I am far from that. So I have begun to look for people's stories and experiences and research (limited as it is) etc that can give me some guidance. What I have learnt is that everyone's brain tumour journey is different. Some people have surgery and bounce back straight away, others, like me, are still struggling months on. And I have finally learnt to shed the stigma I've attached to the word "benign" as my disease progress now is pretty similar to any other type of tumour (except I don't need chemo).
So I have lowered my expectations. I am still going to the gym 3 days a week which I am enjoying. After talking with James I have to accept that returning to work anytime soon just isn't going to happen. I am learning to like the dex. From what I have read, it appears that my type of tumour can swell on and off quite a bit so trying to manage that is going to be an ongoing thing. Today I increased my dosage again as I have had a terrible few days (I nearly went up to the hospital yesterday as something just felt wrong, I was as nauseous and dizzy as just before I was last admitted, but today I feel good). I have a lot to discuss with my neuro when I see him next about how we manage this. And I've accepted that I need help to work through these emotions so I have scheduled a session with a counsellor at the Cancer Council (they offer free sessions).
It has been quite an emotional few days coming to this point. I am still being optimistic, I know I am so much better than I was a few months ago. But hitting this plateau is very frustrating. It doesn't help that I am coming up to my next MRI (next week) and this is playing on my mind.
In the meantime, I am continuing to fill up our days with life stuff. Cleaning, baking, swimming lessons, birthday parties, kids getting sick, doing projects around the house, just life stuff.
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