Why is it that all of a sudden your body clock decides to set a new time when it feels it should wake you up so much that your day really believes it has begun? You guessed it mine is 2.30am I'm on the couch where after sleeping here last night and coming back here now it is so much better on my back and other organs that I can get almost comfy!!
The lounge has just been cleaned so it's even more appealing!Trouble with my brain now is it wants to go off on all these little journeys,now would be a great time to get all the tears out I often feel are lying just under the service,however the weird thing is,I haven't cried all week,now I'm thinking I'm either in too much pain or I'm becoming this very hard cow void of emotion!!!I've gone for the thought that I'm more pi.....d off than sad,this just stopping me in my tracks annoys me more than anything as I get frustrated laying around looking at the things that need doing and hoping that someone else will eventually see them too and bother them enough for them to clean/ tidy up.The thing is where your just sat there all day what else does ones brain see other than mess!!. I'm hoping a book will appeal soon but as I have really been in too much pain to focus, im a few days away from that.
Thursday I will go down to Robina to get my high dose Vit c this I believe is working on boosting my immune system , it's expensive and there is talk of me doing it twice a week but it's $160-220 a go with no rebate, that's another question you ask yourself everyday, how much do I keep spending on my health,and why does a certain amount of guilt come into those thoughts. I think it's like if you add it all up the supplements,diet,doctors,alternative doctors,lifestyle,travel expenses,etc there is a s...t load going out a week and when you have worked all your life what's coming in just doesn't balance.Of course that's what insurance is for,but it's just a question for those of you out there,when is enough enough to spend on health.I try to look at it this way if I believe it is helping with my physical and mental body then stick with it,but why did life have to get so complicated,all I ever used to stress about was whether I really should go and buy those new black shoes I was in love with,not are two types of minerals being a bit extreme!
It's a week today of the procedure so considering I haven't had the thoughts of wanting to die since last Wednesday I am improving,the biggest step will be perhaps when I can sleep in my bed or do a food shop,the food shop can defiantly wait,even the thought of Indro right now scares me,taking in the towels before the storm yesterday had me collapsed back on the lounge for a while!
Well it's 3.08am and unless I could write a classic song it's probably worth me trying to go back to sleep for a bit, talk soon.......
Tuesday 30 August 2011
Saturday 27 August 2011
Down hill turn!
28/8/11
Well here we are day 4 post TACE therapy and feeling terrible,I feel a bit like one minute I'm bumbling along quite happy in say a tea cup at the amusement park only to be whipped up and placed on the fastest roller coaster,not giving my mind or body time to catch up.The nausea is dreadful and so is not being able to keep a lot down!My liver is clearly not happy having been blasted with chemo,now I know that's what we want but I feel there isn't anything left inside that isn't swollen.
There are some positives as there usually are in bad situations..... David and I,well ok I just laid there,started to put the day bed together with all my little treasures I bought back from Bali,Nick and Sara turned up and it was one of those times when hey I'm just happy to be here with my family.
Nick has gone back to Singapore today but plans on coming back in a week,hopefully I will have picked up a bit by then.
Better go as my head is a little fuzzy and can't think of anything to say,I must be sick!!!!
Well here we are day 4 post TACE therapy and feeling terrible,I feel a bit like one minute I'm bumbling along quite happy in say a tea cup at the amusement park only to be whipped up and placed on the fastest roller coaster,not giving my mind or body time to catch up.The nausea is dreadful and so is not being able to keep a lot down!My liver is clearly not happy having been blasted with chemo,now I know that's what we want but I feel there isn't anything left inside that isn't swollen.
There are some positives as there usually are in bad situations..... David and I,well ok I just laid there,started to put the day bed together with all my little treasures I bought back from Bali,Nick and Sara turned up and it was one of those times when hey I'm just happy to be here with my family.
Nick has gone back to Singapore today but plans on coming back in a week,hopefully I will have picked up a bit by then.
Better go as my head is a little fuzzy and can't think of anything to say,I must be sick!!!!
Monday 22 August 2011
The Ride To Conquer Cancer 2011
What a great weekend it's been. Although I thought it was going to be very sad seeing my team mates ride off, I was just so happy to still be part of it,and so proud of them all, they rode over 230km in two days,camping out over night was interesting!a bit cold and not very comfortable. The ride was difficult in parts lots of big hills and to top it off a few heavy downpours.David Sara Erin and I enjoyed being part of the crew especially when all the riders came into our pit stop soaking wet but most still smiling!I felt pretty emotional at the finish line and yes it really would have been amazing to ride in with them,however I still felt part of the team,thanks guys.I believe we raised between us over $25,000 not bad eh!let's hope the $4.7 million that was the total raised helps goes towards QIMR one day finding a cure for cancer,someone's got to one day!
What to do?
Sorry it's been a few days since I wrote on this...... I've not been feeling the best due to the fact that I think my organs are being all squished up,it's a bit like when your pregnant but I suppose without the joy at the end! I have decided that on Wednesday this week I will go in for the TACE therapy this is chemo through my groin up the artery directly into the liver,similar to the SIRT treatment I had last October but not radiotherapy this time. I am hoping that the recovery will be better than last time and have been told this should be the case. My only other option is chemotherapy but for a longer period of time and I'm just not open to this. I have been talking to people and looking at different treatment options for me and Germany and perhaps the States are worth looking into some more. To be honest it's all so mind boggling as of course no one is offering a cure,but I firmly believe these countries are pushing the boundaries and looking at treating the whole thing. It's expensive of course but what choice do I have? I can't just sit back and give in now,I have so much to live for,and I think all I can do now is listen to people gather information and make the choices that feel right for me.Where's that bloody crystal ball when you need it!
I just hope that if this treatment works then the tumor that is causing me the grief will shrink and just bide me some time to explore the options.As you can imagine the waiting is horrible but I'm one of those people that feel,ok made the choice let's just get on with it,I clearly can't carry on like I am.
You remember how excited I was when I had set up the two Raw food chefs to train me starting the end of this month,well I had to email them today to pull out,I'm not an angry person but today I have to say the words f......g cancer,it robs you of your dreams sometimes!in just a few weeks food is now the last thing on my mind,I eat because I have too but the excitement has gone! Ok had my whinge, better go as I'm in the bath and im worried I may drop the iPad any minute!
Will write after Wednesday all being well...... Thank you for everyone's support x
I just hope that if this treatment works then the tumor that is causing me the grief will shrink and just bide me some time to explore the options.As you can imagine the waiting is horrible but I'm one of those people that feel,ok made the choice let's just get on with it,I clearly can't carry on like I am.
You remember how excited I was when I had set up the two Raw food chefs to train me starting the end of this month,well I had to email them today to pull out,I'm not an angry person but today I have to say the words f......g cancer,it robs you of your dreams sometimes!in just a few weeks food is now the last thing on my mind,I eat because I have too but the excitement has gone! Ok had my whinge, better go as I'm in the bath and im worried I may drop the iPad any minute!
Will write after Wednesday all being well...... Thank you for everyone's support x
Sunday 14 August 2011
Great Weekend
Sara and I drove back from the coast via some second hand shops where we managed to squeeze a coffee table into Sara's tiny car, great table good price and perfect for the new day bed.We then called in at the Robina town shopping centre which was probably a mistake as it's such a big place and I still haven't got my head around the fact that I can't shop like I used to! I spent the rest of the evening on the couch not feeling so great. Sunday was a lovely day as it was my beautiful friend Marie's 50th birthday,where I think about 46 of her friends had lunch at 'The Jetty' restaurant at Bulimba. Lovely venue and food. Again the evening was spent doing very little,I really seem to go down hill at night.
Today I'm up making broccoli soup and hoping to go and get some stuffing for the cushions Sara's making for the bed.I'm feeling that horrible nervous feeling in the pit of my stomach as today David and I are off to talk to the TACE dr about wether we go for the chemo in the liver option or not. It's still all a little unbelievable really,Bali now fading away so quickly.Will let you know what the doc says later......
Today I'm up making broccoli soup and hoping to go and get some stuffing for the cushions Sara's making for the bed.I'm feeling that horrible nervous feeling in the pit of my stomach as today David and I are off to talk to the TACE dr about wether we go for the chemo in the liver option or not. It's still all a little unbelievable really,Bali now fading away so quickly.Will let you know what the doc says later......
Thursday 11 August 2011
Sea Air
I had an appointment with a Naturopath on Thursday afternoon,as I'm open to listening to different points of views at this stage concerning my treatment path.My lovely friend offered us the unit at Broadbeach. It's been great just seeing and hearing the ocean,and although I didn't join David for a walk on the beach as felt a little tired,looking at it is still lovely.This morning the sun was quite warm on the balcony and I soaked up my vitamin D for the day! we then drove to Burleigh Heads where we were told of a Raw food restaurant,From Earth and Water it's called and the food was beautiful. Without feeling anger as what's the point! I'm sad to think that maybe this won't be my path to follow, if I do this TACE treatment.On the other hand it's far better for me to say to myself,ok the raw food chef idea is just on hold,they'll be no stopping me if I feel well enough!
After lunch we walked down to the beach the winter sun on your face is perfect.It's been a beautiful day( apart from Jack's school ringing me to say Jack's lip has split open mucking about with friends,and he needed 3 stitches!!) oh well he's ok and when as parents do we stop saying 'it will end with someone getting hurt or in tears" you see we're always right!!
Home tomorrow,still unclear in my head as to what to do,just a couple more doctors to talk too.I choose LIFE so what ever it takes eh??
After lunch we walked down to the beach the winter sun on your face is perfect.It's been a beautiful day( apart from Jack's school ringing me to say Jack's lip has split open mucking about with friends,and he needed 3 stitches!!) oh well he's ok and when as parents do we stop saying 'it will end with someone getting hurt or in tears" you see we're always right!!
Home tomorrow,still unclear in my head as to what to do,just a couple more doctors to talk too.I choose LIFE so what ever it takes eh??
Wednesday 10 August 2011
Cruel
I'm getting this deja vu feeling all the time now,two years a go I would wake up in the night with a feeling of sometimes panic,saddness or just dread,and here it is again.I can't believe how life can change so quickly. In Bali I would wake up go and open the sliding door and hop back into bed and look at the beautiful trees and sky and breathe in that 'bali' smell which I love! Now I wake up, every door is shut, there's no air and it's bloody freezing and my heart is pounding with fear!! It's only been a week so I'm sure I'll get used to it!
Cancer is just so cruel,it causes pain to everyone,and shatters dreams in a second. There's also a strong feeling of guilt,now I've worked through a lot of what guilt means,but in the case of cancer I'm not sure the same rule applies!! It's more a sense of responsibility I suppose,I feel responsible for my families pain and my fiends too.Yes I'm fully aware its not my fault but it screws with everything.I think you must end up becoming an expert on grief too, as while your still alive,things seem to happen on a daily basis that you feel a loss for,there comes a period that your grieving that loss,lucky for me I don't like to dwell on these things for too long as I seriously don't enjoy being miserable so will move on pretty quick,but it's good to recognize how you feel rather than dismiss it.I try to follow the same route with all my feelings,anxiety,fear,panic the list goes on!!
We have spoken to the Oncologist and there are a few options if you want to call them that! Chemo the normal way,or TACE treatment which is chemo going directly into the liver up through the main vein in my groin,I did this once before but they used radiotherapy that time,which has already damaged my liver! Although the chemo does pass through the body via blood it can be less of an impact I think than intravenously . After reading about this I'm a little worried as it says that less than 50% of tumors shrink,and if the liver is too damaged liver failure can accour, I'm thinking that he wouldn't attempt it if he thought that was going to happen right?? It's so hard to get your head around that this is a 'palliative' treatment( I hate that word) I feel as though they have written me off and this is just something to try to give me that little bit longer,which of course is the reality,but I'm somewhere on the page in front thinking that just maybe I will be one of those people that survive a terminal illness! I can even see me on a podium talking to others on how it is possible and never give up believing that!Monday David and I will go and talk with the TACE doctor and we'll go from there. My thoughts so far are ok let's do this have a shitty 2 months then build myself back up and look into other treatments that doctors are doing in Germany or America,but maybe right now it's important for me to shrink this big bugger as I can feel my body going downhill already. I'll keep you posted...... If you pray then perhaps could you say one for my family right now,thank you x.....
Cancer is just so cruel,it causes pain to everyone,and shatters dreams in a second. There's also a strong feeling of guilt,now I've worked through a lot of what guilt means,but in the case of cancer I'm not sure the same rule applies!! It's more a sense of responsibility I suppose,I feel responsible for my families pain and my fiends too.Yes I'm fully aware its not my fault but it screws with everything.I think you must end up becoming an expert on grief too, as while your still alive,things seem to happen on a daily basis that you feel a loss for,there comes a period that your grieving that loss,lucky for me I don't like to dwell on these things for too long as I seriously don't enjoy being miserable so will move on pretty quick,but it's good to recognize how you feel rather than dismiss it.I try to follow the same route with all my feelings,anxiety,fear,panic the list goes on!!
We have spoken to the Oncologist and there are a few options if you want to call them that! Chemo the normal way,or TACE treatment which is chemo going directly into the liver up through the main vein in my groin,I did this once before but they used radiotherapy that time,which has already damaged my liver! Although the chemo does pass through the body via blood it can be less of an impact I think than intravenously . After reading about this I'm a little worried as it says that less than 50% of tumors shrink,and if the liver is too damaged liver failure can accour, I'm thinking that he wouldn't attempt it if he thought that was going to happen right?? It's so hard to get your head around that this is a 'palliative' treatment( I hate that word) I feel as though they have written me off and this is just something to try to give me that little bit longer,which of course is the reality,but I'm somewhere on the page in front thinking that just maybe I will be one of those people that survive a terminal illness! I can even see me on a podium talking to others on how it is possible and never give up believing that!Monday David and I will go and talk with the TACE doctor and we'll go from there. My thoughts so far are ok let's do this have a shitty 2 months then build myself back up and look into other treatments that doctors are doing in Germany or America,but maybe right now it's important for me to shrink this big bugger as I can feel my body going downhill already. I'll keep you posted...... If you pray then perhaps could you say one for my family right now,thank you x.....
Sunday 7 August 2011
A Good Day
7/8/11
Thank you to everyone who came up to The Hundred Acre Bar yesterday afternoon and evening.One of my favorite spots to enjoy a drink and watch the sun go down.
Today was a beautiful day,going for a bike ride would have been great,however not really up to it at the moment,so I spent most of the day at my beautiful sisters house. We made a batch of bliss balls to last us both the week,I won't buy biscuits now so lucky the boys like them too!Sara then started making my cushions for this huge day bed David is making on the deck downstairs.I think at some stage I had a little snooze on the sofa outside(sewings not my thing!!)After all the tears that came yesterday it's been such a lovely day and I've hardly cried at all,maybe it takes a day or two for them to replenish the supply!!Today I'm feeling that it's all not happening but also that if I'm about to start a whole lot of horrible treatment then don't spoil the few days I have left!
Wednesday will be when I'll need to start to think of a plan so until then let's just enjoy these sunny days hey?? Chat soon ........
Thank you to everyone who came up to The Hundred Acre Bar yesterday afternoon and evening.One of my favorite spots to enjoy a drink and watch the sun go down.
Today was a beautiful day,going for a bike ride would have been great,however not really up to it at the moment,so I spent most of the day at my beautiful sisters house. We made a batch of bliss balls to last us both the week,I won't buy biscuits now so lucky the boys like them too!Sara then started making my cushions for this huge day bed David is making on the deck downstairs.I think at some stage I had a little snooze on the sofa outside(sewings not my thing!!)After all the tears that came yesterday it's been such a lovely day and I've hardly cried at all,maybe it takes a day or two for them to replenish the supply!!Today I'm feeling that it's all not happening but also that if I'm about to start a whole lot of horrible treatment then don't spoil the few days I have left!
Wednesday will be when I'll need to start to think of a plan so until then let's just enjoy these sunny days hey?? Chat soon ........
Saturday 6 August 2011
Sadness :(
I'm sure it was only a week ago I wrote that I felt the luckiest person alive,well I'm glad I enjoyed that moment as it's all turned to s...t now!!On the up side the cancer has not spread to any other organs,the major down side is I have a 4.2cm tumour in my liver among multiple other ones that don't seem to have grown since 09,however this beast is causing me pain and discomfort so something has to be done pretty quick.It's not looking like they can just cut it out,so im thinking it will be poison( chemo).I'm not a huge fan of this stuff,and to be honest right this minute it's still not a definate choice of mine.I will be back at the Wesley on wednsday to talk with my oncologist with regards to options! I'm still interested in looking at some different ways of doing this,but I am aware that time perhaps isn't on my side right now.
My feelings at this moment are one of disbelief added with a huge amount of sadness,perhaps not the mind set I need to go into battle! I will however never give up.
Thank you to everyone's kindness and support,the most difficult thing right now is as a Mum I don't want any of this to be going on in the boys lives,I'm not a big fan when I am told it will make them stronger better people.I'm sorry but my boys are bloody amazing in my eyes,and they just need a normal Mum waiting in the wings as they go through life, there for when ever they need me.( ok so maybe I'm not normal!!)
I'm off to make the most of this beautiful Sunday talk soon.......
My feelings at this moment are one of disbelief added with a huge amount of sadness,perhaps not the mind set I need to go into battle! I will however never give up.
Thank you to everyone's kindness and support,the most difficult thing right now is as a Mum I don't want any of this to be going on in the boys lives,I'm not a big fan when I am told it will make them stronger better people.I'm sorry but my boys are bloody amazing in my eyes,and they just need a normal Mum waiting in the wings as they go through life, there for when ever they need me.( ok so maybe I'm not normal!!)
I'm off to make the most of this beautiful Sunday talk soon.......
Thursday 4 August 2011
Holding One's Breath!
I've been doing this most of the day in more ways than one! For those that have had the experience of an MRI will know what I mean,your shoved in a tunnel,trying to keep your over active mind from freaking out,it doesn't help when the nurse says here is a little buzzer to press if you need to get out in a hurry! All of a sudden you then feel claustrophobic!!The next 30minutes you are holding your breath every few minutes,normally this wouldn't worry me but I am finding it a little difficult to take full deep breaths so it was starting to upset me a bit,next this fluid is pumped into your arm,I'm thinking it's radio active but I could be getting that mixed up with the next scan!Anyway can't really complain.... Next was a bone scan this I also find to be a little confronting, but am ok once the machine gets passed your eyes I feel like I'm in a toasted sandwich maker,it's so close to your nose you go cross eyed if you look up! By this stage the harsh reality of what was happening again hit me and the tears just flowed. I got it together by thinking about what groceries I'd need to pick up in Coles on the way home!
Tomorrow at two I find out the verdict! I know it won't be good news but also feel that with some knowledge that I have gained over the last two years I have choices.Perhaps now is the time I write the book I'd thought of a while back, "How do you talk to a Terminally ill person" I can joke about it now sitting here in my lovely home, fire on and not feeling too bad,however it's tuff,the one thing I do know is I have been asked many times 'how do you come to terms knowing you are going to die' the answer is, you never do! Why would I waste my precious time trying to understand what can only be described as a nightmare. I believe you keep living until the end. Don't get me wrong I have put in place some things I would like to happen if I'm not around ,but I really haven't ever felt why me?? It's happened and all I can do is everything possible to stay here.
Well lovelies pretty tired now talk soon..........one more thing,the comments I say are my own
opinion so sorry if I offend anyone.
Tomorrow at two I find out the verdict! I know it won't be good news but also feel that with some knowledge that I have gained over the last two years I have choices.Perhaps now is the time I write the book I'd thought of a while back, "How do you talk to a Terminally ill person" I can joke about it now sitting here in my lovely home, fire on and not feeling too bad,however it's tuff,the one thing I do know is I have been asked many times 'how do you come to terms knowing you are going to die' the answer is, you never do! Why would I waste my precious time trying to understand what can only be described as a nightmare. I believe you keep living until the end. Don't get me wrong I have put in place some things I would like to happen if I'm not around ,but I really haven't ever felt why me?? It's happened and all I can do is everything possible to stay here.
Well lovelies pretty tired now talk soon..........one more thing,the comments I say are my own
opinion so sorry if I offend anyone.
Wednesday 3 August 2011
Seen better days's!!!
Hello,well I didn't plan on continuing this blog as I'm sure 'normal' life is not something that will interest anyone,however to be truthful,life has suddenly just taken a turn for the worse and as I find it hard to write in a diary,I thought perhaps I'll give this a go.The pain under my ribs in the last day or two of the trip did become a little worse and if I'm honest I did feel a tad dizzy and nauseous,and maybe the 7kg I lost perhaps wasn't all that great healthy food I was having! After a visit to my lovely GP who I haven't seen for ages,as I never seem to be sick with normal stuff! I ended up at the Wesley for scans,praying I had gall stones. Unfortunalty I do have a few but nothing that would cause the discomfort. I then had an ultra sound still inconclusive so went for an MRI, they put in the needle ready for the dye but then they said something was blocking the picture, at first I thought oh god is the tumour that big,turned out it was my belly button ring! I have had it in for 11 years and don't give it a lot of thought although every time I touch it I feel all weird. Anyhow it also had the same effect on the two nurses that tried to get it out,a male nurse came in and he to couldn't budge it. I had to come home so David could cut it with a pair of pliers!That's my youth all gone now!
I'm back in the Wes in the morning so probably another long day ahead.I'm feeling right now that it's all not possible,however I'm thinking I'll gather all this information talk to a few other people I have some faith in and make my decision over the next few days, I'm so afraid of being the sad sap back on the couch on chemo not participating in life,but maybe in a few days I'll be thinking how lucky I have been to be able to get a good year or so and what a fantastic time it's been!
I'll keep you posted ......perhaps
I'm back in the Wes in the morning so probably another long day ahead.I'm feeling right now that it's all not possible,however I'm thinking I'll gather all this information talk to a few other people I have some faith in and make my decision over the next few days, I'm so afraid of being the sad sap back on the couch on chemo not participating in life,but maybe in a few days I'll be thinking how lucky I have been to be able to get a good year or so and what a fantastic time it's been!
I'll keep you posted ......perhaps
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