Wednesday, 28 September 2011
Mini breaks!
28/9/11
Well I've been lucky enough to have had a couple of short breaks away in the last few weeks.I had a couple of days at a unit with my lovely friend Joh,I'm not exactly a bundle of laughs at the moment,but it was good to just sit on the beach and chat,thanks Joh you always get that smile back on my face!then the boys,girlfriends and myself have just spent 3 days at Noosa,although I am still very weak and weepy,it's been great just being around them all.I'm so proud to be there mum.
I'm hoping to take it easy the next few days although back at the coast in the morning for some more iv Vit C, I could do without the trip,but was hoping I would feel so much better than I do by now,so if it gives me a pick up,I need it.Steroids are not working!
Sara and I leave for NZ on Monday,looking forward to it just hoped I had felt a little stronger by now.I know we will enjoy it no matter what.I'm looking forward to standing at the top of Queenstown after the cable car up,and looking at that most beautiful view.
Enjoy the lovely days chat soon .......
Well I've been lucky enough to have had a couple of short breaks away in the last few weeks.I had a couple of days at a unit with my lovely friend Joh,I'm not exactly a bundle of laughs at the moment,but it was good to just sit on the beach and chat,thanks Joh you always get that smile back on my face!then the boys,girlfriends and myself have just spent 3 days at Noosa,although I am still very weak and weepy,it's been great just being around them all.I'm so proud to be there mum.
I'm hoping to take it easy the next few days although back at the coast in the morning for some more iv Vit C, I could do without the trip,but was hoping I would feel so much better than I do by now,so if it gives me a pick up,I need it.Steroids are not working!
Sara and I leave for NZ on Monday,looking forward to it just hoped I had felt a little stronger by now.I know we will enjoy it no matter what.I'm looking forward to standing at the top of Queenstown after the cable car up,and looking at that most beautiful view.
Enjoy the lovely days chat soon .......
Wednesday, 21 September 2011
Update
21/9/11
I just feel it's been a while since I wrote.Not a lot has happened I'm still in pain,however not that I'm keen on doing this but I am going to go on steroids today for 2 weeks,this should help with the inflammation and give me an appetite.11kg lighter and not looking good for it at all,it's like I've been on the biggest loser and have ended up with a lot of loose skin yuk! I have an appreciation for people that have no bum now,as it's so uncomfortable sitting on uncomfy chairs and feeling the two bones!! I get good and bad days,some days are just so sad,that I just cry most of it,while others I feel almost excited to think just how good I will feel when this has passed.
It's been very tuff on David and I'm only just beginning to realise all that he has been doing,and emotionally how draining this all is.I'm really looking forward to taking over again,and making some meals etc,especially starting with my raw food recipes.
With the help of the steroids I should be ready for my next trip that I've just booked!!Sara and I are off to NZ on the 3rd Oct for a week, I love NZ and so want to be the person to show Sara how beautiful it is. We will do a similar journey I did with the lovelies in 09,it's a shame I have no hair as its pretty chilly over there but I'm sure I'll find a warm beenie or two!
I'm still looking into alternative clinics and when I get back from NZ David and I may have decided on giving one of them a go. Otherwise I sit and wait for my tumor markers to rise,and give the chemo another go. I believe that when one is fighting for your life you will try all the options you believe to be of some benefit to you.It's a minefield out there though,it's like deciding on some accomodation that your happy with then going on trip advisor only to hear it's a dump!
I'm also off to Noosa for a few days next week with the boys,as both are on holidays then.It's great that they just get on with normal life,but I miss them and want to mother them a bit!
The weather has been great the last few weeks and being in the sun always makes me feel happier.
Talk soon ..........
I just feel it's been a while since I wrote.Not a lot has happened I'm still in pain,however not that I'm keen on doing this but I am going to go on steroids today for 2 weeks,this should help with the inflammation and give me an appetite.11kg lighter and not looking good for it at all,it's like I've been on the biggest loser and have ended up with a lot of loose skin yuk! I have an appreciation for people that have no bum now,as it's so uncomfortable sitting on uncomfy chairs and feeling the two bones!! I get good and bad days,some days are just so sad,that I just cry most of it,while others I feel almost excited to think just how good I will feel when this has passed.
It's been very tuff on David and I'm only just beginning to realise all that he has been doing,and emotionally how draining this all is.I'm really looking forward to taking over again,and making some meals etc,especially starting with my raw food recipes.
With the help of the steroids I should be ready for my next trip that I've just booked!!Sara and I are off to NZ on the 3rd Oct for a week, I love NZ and so want to be the person to show Sara how beautiful it is. We will do a similar journey I did with the lovelies in 09,it's a shame I have no hair as its pretty chilly over there but I'm sure I'll find a warm beenie or two!
I'm still looking into alternative clinics and when I get back from NZ David and I may have decided on giving one of them a go. Otherwise I sit and wait for my tumor markers to rise,and give the chemo another go. I believe that when one is fighting for your life you will try all the options you believe to be of some benefit to you.It's a minefield out there though,it's like deciding on some accomodation that your happy with then going on trip advisor only to hear it's a dump!
I'm also off to Noosa for a few days next week with the boys,as both are on holidays then.It's great that they just get on with normal life,but I miss them and want to mother them a bit!
The weather has been great the last few weeks and being in the sun always makes me feel happier.
Talk soon ..........
Friday, 16 September 2011
Sea Sun and Sand all good for the Soul!
17/9/11
I'd had an invite from a lovely friend Bernie to come and stay with her while she is house sitting at Alexandra Headlands. I did feel at first that I was not only too miserable to plonk myself on anyone else (sorry save that for family!!) but I wasn't sure I was up for the journey as I hadn't driven for a few weeks.However get me in that mini with the roof down and what ever music I feel like listening too and it picks my spirit up straight away.
I stopped at the 'happy garage' for a tea and arrived to this most beautiful home,three stories of modern architecture with two decks facing down to the beach.Bernie I know has given me the best bedroom in the house so at night I sleep with the blind open the lights are lovely and at sunrise everything looks pink.I can also here the surf in the distance.
Bernie's sister Jo is up from Victoria to spend a few days here,so I have been so spoilt,I am blown away with their kindness to me they both are the sort of people that make you feel special and enjoy doing things for others,thank you to you both,although it seems to be such a long climb back up this time,the cloud is lifting and I appreciate all you have done to help with this.
Yesterday we sat on the beach at cotton trees,and the first day I was here we went down there for sunset,it's such a beautiful spot,and they brought a flask of tea for me!
This morning we had a few hours on the beach then a lovely lunch and now will spend the afternoon doing very little! I think it's fish and chips on the beach later on.
Home in the morning,how beautiful is Queensland hey? We are all so lucky to live in such a beautiful part of the world I think.I must be feeling better as I am thinking just how happy I will be when I get over this and have a period of time of just good old happy life,I wait with bated breath for it to come.
I'd had an invite from a lovely friend Bernie to come and stay with her while she is house sitting at Alexandra Headlands. I did feel at first that I was not only too miserable to plonk myself on anyone else (sorry save that for family!!) but I wasn't sure I was up for the journey as I hadn't driven for a few weeks.However get me in that mini with the roof down and what ever music I feel like listening too and it picks my spirit up straight away.
I stopped at the 'happy garage' for a tea and arrived to this most beautiful home,three stories of modern architecture with two decks facing down to the beach.Bernie I know has given me the best bedroom in the house so at night I sleep with the blind open the lights are lovely and at sunrise everything looks pink.I can also here the surf in the distance.
Bernie's sister Jo is up from Victoria to spend a few days here,so I have been so spoilt,I am blown away with their kindness to me they both are the sort of people that make you feel special and enjoy doing things for others,thank you to you both,although it seems to be such a long climb back up this time,the cloud is lifting and I appreciate all you have done to help with this.
Yesterday we sat on the beach at cotton trees,and the first day I was here we went down there for sunset,it's such a beautiful spot,and they brought a flask of tea for me!
This morning we had a few hours on the beach then a lovely lunch and now will spend the afternoon doing very little! I think it's fish and chips on the beach later on.
Home in the morning,how beautiful is Queensland hey? We are all so lucky to live in such a beautiful part of the world I think.I must be feeling better as I am thinking just how happy I will be when I get over this and have a period of time of just good old happy life,I wait with bated breath for it to come.
Saturday, 10 September 2011
Another Loss!
The last few days I have had that familiar feeling of my head tingling and woke up to little strands of hair falling out. S...t is all I can say,we were told it was a slight possibility but unusual,is anything on my side right now! Actually I don't mean that,the tumors have gone for the time being so that's a win.
Yesterday Sara Jen and I went off to see the Russian Ballet the matinee one as I'm no good at night time.It was really lovely,they did like a medley of different famous ballets so each scene was different.David had a lovely roast ready and the fire on when we got home. I am so cold all the time for some reason,so we've had to go out and get more wood,I thought winter was over.
Although I am still in pain I am hoping that from now on I will pick up and pull myself out of my misery,I joked with a friend this morning that while I was in Bali and I started to get this pain under my ribs,I am too stupid too think that is was cancer related and put it down to a yoga injury!Its almost like when I am well I am so totally convinced I am going to live for a very long time,then bang it shocks me when this sort of thing happens and I fall back down,this time I really have had to face the fact that I am not going to live a long time,and as you can imagine comes so much grief and sadness it's suffocating.I imagine I'm on a pond sometimes and there are these huge stepping stones and after this last lot of treatment I just jumped a few more of them,there's quite a few left and luckily I can't see the last one but certainly feel I'm standing somewhere in the middle of that pond right now!
I'm going to go and enjoy my day bed so catch you later,have a lovely Sunday.......
Yesterday Sara Jen and I went off to see the Russian Ballet the matinee one as I'm no good at night time.It was really lovely,they did like a medley of different famous ballets so each scene was different.David had a lovely roast ready and the fire on when we got home. I am so cold all the time for some reason,so we've had to go out and get more wood,I thought winter was over.
Although I am still in pain I am hoping that from now on I will pick up and pull myself out of my misery,I joked with a friend this morning that while I was in Bali and I started to get this pain under my ribs,I am too stupid too think that is was cancer related and put it down to a yoga injury!Its almost like when I am well I am so totally convinced I am going to live for a very long time,then bang it shocks me when this sort of thing happens and I fall back down,this time I really have had to face the fact that I am not going to live a long time,and as you can imagine comes so much grief and sadness it's suffocating.I imagine I'm on a pond sometimes and there are these huge stepping stones and after this last lot of treatment I just jumped a few more of them,there's quite a few left and luckily I can't see the last one but certainly feel I'm standing somewhere in the middle of that pond right now!
I'm going to go and enjoy my day bed so catch you later,have a lovely Sunday.......
Thursday, 8 September 2011
Good News!
9/9/11
Sorry I really have been feeling so bad that I had nothing to say and who wants to listen to another whinger!? Anyway yesterday I felt that the pain I was in all the time perhaps was not normal,after speaking with the surgeon he agreed that I should have a scan to see what's going on. Well the good news is that the pain is that bloody huge tumour still there but is now a solid dead mass,(that sounds horrible doesn't it!)plus all the other tumors in the liver are now dead. My body is working very hard to get rid of all of this that is why I have lost a lot of weight,and my job now is to just try and put it back on and build my strength.My family are very happy and so am I,however although I know it's a win,it's not of course the cure.For those that used to play the space invader game I feel like I managed to get all the little bastards that drop down on the screen this time,but give it a period of time and the screen fills back up with another whole load of them.
Perhaps if I was feeling better then I would appreciate the win a little more.I think my next move is rather than wait till I feel pain or discomfort like this time,I will look into some more alternative treatments that are going on overseas. Germany seem to be doing some good things like combining chemo with hyperthermia treatments,I spoke to someone who had had three rounds of chemo with no awful side effects,bring that on I say,at this moment I just can't imagine doing any more chemo it's just plain bloody horrible!
I'm off on Saturday lunch time to see the Russian Ballet so I'll be resting up for that outing,and hoping next week I'll be picking up even more.........
Sorry I really have been feeling so bad that I had nothing to say and who wants to listen to another whinger!? Anyway yesterday I felt that the pain I was in all the time perhaps was not normal,after speaking with the surgeon he agreed that I should have a scan to see what's going on. Well the good news is that the pain is that bloody huge tumour still there but is now a solid dead mass,(that sounds horrible doesn't it!)plus all the other tumors in the liver are now dead. My body is working very hard to get rid of all of this that is why I have lost a lot of weight,and my job now is to just try and put it back on and build my strength.My family are very happy and so am I,however although I know it's a win,it's not of course the cure.For those that used to play the space invader game I feel like I managed to get all the little bastards that drop down on the screen this time,but give it a period of time and the screen fills back up with another whole load of them.
Perhaps if I was feeling better then I would appreciate the win a little more.I think my next move is rather than wait till I feel pain or discomfort like this time,I will look into some more alternative treatments that are going on overseas. Germany seem to be doing some good things like combining chemo with hyperthermia treatments,I spoke to someone who had had three rounds of chemo with no awful side effects,bring that on I say,at this moment I just can't imagine doing any more chemo it's just plain bloody horrible!
I'm off on Saturday lunch time to see the Russian Ballet so I'll be resting up for that outing,and hoping next week I'll be picking up even more.........
Saturday, 3 September 2011
Friday, 2 September 2011
Lost it!
Yes I've lost it in more ways than one, but I really wrote that title because I had almost finished the blog and got a phone call and now can't find where it is! So sorry let's do a more condensed version! It's been 10days post treatment and I'd have to be improving because I'm bloody grumpy, I feel so weak and still in pain to breath in it's getting to me now,I'm just the best patient when I'm well ha ha!now I just want to be like normal and not have to rely on anyone to help me,that's pretty ungrateful I know but I'm sure many of you would feel the same or frustrated. Sara and I have just got back from the coast,we went down Thursday to have my Vit C boost and stayed at the lovely Carols unit,I am so lucky to be offered this as even though I wasn't driving I just want to lay down when I'm done not sit in a car for over an hour.
Yesterday I have also been lucky enough to be in touch with a coulpe who have just arrived home from spending time at a German Clinic. Even though our cancer is totally different I like what they are doing over there,and he was able to tolerate the treatment very well. The next plan for me is to gather some more information on a few others then make a plan for when I am felling better, there are options here one is to have this done again in a few weeks with radiation like last time or maybe even the chemo again,but there just has to be something out there better than this,I'm sorry but chemo feels like I'm dying slowly and I am still in the head space that says people are being cured or at least have a lot longer quality of life to live I choose that option please!
We did have a laugh yesterday as I wanted to see the shops but new I couldn't walk around so we picked up a wheel chair on the way in at pacific fair and it was great, I did feel like Andy off Little Britian as if Sara wondered off then I would get up,look around a rack then sit back down,I got a few odd stares when we parked it outside the long corridor of the toilets and walked down with all the shopping bags then got back in it!My arms wern't a lot of help but if you kick the foot rest away you feet can move you pretty fast around Myers!
We then stayed and watched a movie and although home by 7ish it was obviously too much for me as I felt pretty awful last night and I'm extra tired today,you see how annoying all this is looking at clothes ( I was good only brought $13 track pants!)is all part of my healing process don't you think!??
On the way home we stopped again at the Raw Food Cafe I told you about in Burleigh Heads,food was lovely,but today as I said I'm not good so eneded up bringing mine home for later.
I think I would like a fire tonight it's a bit chilly........
Yesterday I have also been lucky enough to be in touch with a coulpe who have just arrived home from spending time at a German Clinic. Even though our cancer is totally different I like what they are doing over there,and he was able to tolerate the treatment very well. The next plan for me is to gather some more information on a few others then make a plan for when I am felling better, there are options here one is to have this done again in a few weeks with radiation like last time or maybe even the chemo again,but there just has to be something out there better than this,I'm sorry but chemo feels like I'm dying slowly and I am still in the head space that says people are being cured or at least have a lot longer quality of life to live I choose that option please!
We did have a laugh yesterday as I wanted to see the shops but new I couldn't walk around so we picked up a wheel chair on the way in at pacific fair and it was great, I did feel like Andy off Little Britian as if Sara wondered off then I would get up,look around a rack then sit back down,I got a few odd stares when we parked it outside the long corridor of the toilets and walked down with all the shopping bags then got back in it!My arms wern't a lot of help but if you kick the foot rest away you feet can move you pretty fast around Myers!
We then stayed and watched a movie and although home by 7ish it was obviously too much for me as I felt pretty awful last night and I'm extra tired today,you see how annoying all this is looking at clothes ( I was good only brought $13 track pants!)is all part of my healing process don't you think!??
On the way home we stopped again at the Raw Food Cafe I told you about in Burleigh Heads,food was lovely,but today as I said I'm not good so eneded up bringing mine home for later.
I think I would like a fire tonight it's a bit chilly........
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