woops, so my update from my visit with the stoma nurse wasn't quite "tomorrow".... 2 nights overdue isn't too long to wait for an update... my excuse....I'm on "cancer time" ;-) hey having cancer has to have some good points right...
anyway.... so I met with my stoma nurse on Tuesday (a Stoma nurse specialises in all things stoma... a stoma is the name of the "outlet"/ opening that redirects all your waste etc into the bag). She was a wealth of knowledge (and yes I asked her 101 questions), and made things feel kind of "normal" if you can ever call having your small intestine re-plumbed so it sticks out of your stomach.
during my meeting we looked at its placement (within reason you can have a bit of say as to where it will sit), so that I can ride my bike comfortably and that it "fits" ok with my body shape. The big test will be this weekend when I attach a sample bag to my skin and have a test ride of my bike and have a play with my clothes to see if its comfortable.
As I write this, time feels like it is very quickly ticking away... it is now only 5 more sleeps until I have to go into hospital... my first night in hospital will involve prepping for surgery, this will mean I will have to stop eating on Monday night... my last meal for what may be quite some time....It feels rather weird knowing that I have some knowledge about what is going to happen to me.... 4.5 hours in surgery, recovery, getting crammed filled with tubes and drips (everything going both in and out is carefully measured for several days), nill by mouth until my gut starts showing signs of working, and a swimming pool of water being IV'ed into me to make sure I don't dehydrate. For someone who's never had more than a local anaesthetic and a few stitches the whole concept of what is about to happen is more than daunting.
I guess what I take come comfort in is that this time next week it will be all over... I'll be into the next stage of my journey... hopefully fully cancer free.... after all that has happened in the last few months, I seriously can't wait for this to happen.... fuck off cancer, I have shit to do.
oh, before I sign off for the night.... I thought I'd give you an update from the side effects of the chemo... yep, 5 weeks post chemo and I'm still having side affects.... remember the red feet? well they are not sore anymore (yay), but they are weirdly shiny... picture Tom Cruise sliding across the floor with white socks and a shirt on.... except I don't need the socks and I can do this on carpet without trying! new party trick! adding to this my hands are still shiny at times as well... Chemo does weird shit to your body.
So I checked my feet today, and as well as being shiny, I now have large strips of skin coming off... stupid feet! I feel like some creature that sheds its skin.... crap I'm turning into a lizard! hmmm attractive ;-)
Right enough of crusty feet.... I'm off to brew a pot of greentea.
till next time... take care
RAG x
Thursday 30 October 2014
Monday 27 October 2014
A touch of normal
It's been a busy but good week.... Tuesday was my Birthday, boy have I been spoilt... am I feeling the love by those around me (both near and far)? YES. If I can name one positive thing that has come about since I discovered I have cancer, is that I have really discovered who my real friends and Whanau are. These are the people who make you laugh, hug you when you need, include you in their life events such as involving you in their sporting events as I'm pretty much relegated to the bench at the moment, take you out shopping, spend time facebooking me, and most of all... just treat me like I'm me.
My Birthday sadly did involve me having to work during the day, but I did get to eat my Fish and Chips and although I may have peaked to early on the food front, I did manage a few teaspoons of ice cream and chocolate sauce at the end (better than nothing eh!).
My amazing other half went all out, and to top my day he brought me a new camera so that I have a new hobby to do over Summer that's a little more slow paced that trying to ride my bike everyday. I have to confess... I must be getting old.... it took me forever to work out how to set the time and date on the thing!!! I am very thankful to my sister-in-law who sat down and explained some of the bells and whistles on it!
Fast forward a few days... this weekend has been a long holiday weekend, so we decided to drive up the Island to New Plymouth to visit family. Its been a great weekend... busy but really nice and relaxing (although I have to admit I'm pretty tired) , from watching Miss 7 play with her cousins (especially watching the bond between her and her 2 and half year old cousin....talk about two peas in a pod!!! hmmm this could be trouble in a few years!), to sitting down and spending time with Miss 7's Grandparents and then spending the mornings and evenings with my Brother and Sister-in law its been a great weekend. So good that I even started to forget that in just over a week the next part of this journey begins.
This only really started to dawn on my during our rather slow drive back (Labour weekend traffic driving back to Wellington is horrible!).... tomorrow I meet with the stoma nurse to talk over what's going to happen and to find out the finer details of my Ileostomy... which I have a strong feeling will have a huge impact on my life for a while.... lets start writing my list of questions.....
I guess on a positive note, it does mean that I am one step closer to finally kicking this cancer in the butt once and for all.... I'm not really looking forward to tomorrow.... I know wisdom make you stronger, but it also gives me more "food for thought" to add to my ever increasing bank of stuff going through my head!
I guess I should start getting my big girl undies out... I think I'm going to be needing to put them on....
I'll report back tomorrow.....
Until then... I'm off to get some catch up sleep and to reflect on how cool this weekend has been.
take care
RAG x
My Birthday sadly did involve me having to work during the day, but I did get to eat my Fish and Chips and although I may have peaked to early on the food front, I did manage a few teaspoons of ice cream and chocolate sauce at the end (better than nothing eh!).
My amazing other half went all out, and to top my day he brought me a new camera so that I have a new hobby to do over Summer that's a little more slow paced that trying to ride my bike everyday. I have to confess... I must be getting old.... it took me forever to work out how to set the time and date on the thing!!! I am very thankful to my sister-in-law who sat down and explained some of the bells and whistles on it!
Fast forward a few days... this weekend has been a long holiday weekend, so we decided to drive up the Island to New Plymouth to visit family. Its been a great weekend... busy but really nice and relaxing (although I have to admit I'm pretty tired) , from watching Miss 7 play with her cousins (especially watching the bond between her and her 2 and half year old cousin....talk about two peas in a pod!!! hmmm this could be trouble in a few years!), to sitting down and spending time with Miss 7's Grandparents and then spending the mornings and evenings with my Brother and Sister-in law its been a great weekend. So good that I even started to forget that in just over a week the next part of this journey begins.
This only really started to dawn on my during our rather slow drive back (Labour weekend traffic driving back to Wellington is horrible!).... tomorrow I meet with the stoma nurse to talk over what's going to happen and to find out the finer details of my Ileostomy... which I have a strong feeling will have a huge impact on my life for a while.... lets start writing my list of questions.....
I guess on a positive note, it does mean that I am one step closer to finally kicking this cancer in the butt once and for all.... I'm not really looking forward to tomorrow.... I know wisdom make you stronger, but it also gives me more "food for thought" to add to my ever increasing bank of stuff going through my head!
I guess I should start getting my big girl undies out... I think I'm going to be needing to put them on....
I'll report back tomorrow.....
Until then... I'm off to get some catch up sleep and to reflect on how cool this weekend has been.
take care
RAG x
Monday 20 October 2014
Monday update
Well, today we met my Surgeon... and I now have a bit more of a plan.... well kinda.
The info so far.....
Things are moving, and I'm hoping I'm nearing the end of this by killing and getting rid of the cancer once and for all.
On a side note... tomorrows my birthday... 37 has always been my favourite number so lets hope its a good omen that things are on the up!!! Am also hoping I'm able to enjoy tomorrow by eating ice-cream.... fingers crossed for a nausea free day!
right time to sign off and clock in my last few hours left of being a young 36 ;-)
RAG x x x
The info so far.....
- The tumour has now shrunk (yay!... apparently its nearly half its original size... the radiotherapy did its job well... oh and its still shrinking!).
- My operation day is looking very much like the 5th of November.
- I will end up with a temporary Ileostomy (basically they are going to re plumb my intestines, with my small intestine being rerouted to the outside of my stomach... which means for a few months I will have a bag... sadly not Gucci, but its way better than the other option).
- I may or may not need another dose of Chemo... this will depend on the pathology results after the op.
- I will be the house guest of Hutt Hospital for about a week (give or take).
- Surgery will be open rather than laparoscopic (scars are cool eh!), and will take about 4 hours (sweet all I have to do is have a sleep).
Things are moving, and I'm hoping I'm nearing the end of this by killing and getting rid of the cancer once and for all.
On a side note... tomorrows my birthday... 37 has always been my favourite number so lets hope its a good omen that things are on the up!!! Am also hoping I'm able to enjoy tomorrow by eating ice-cream.... fingers crossed for a nausea free day!
right time to sign off and clock in my last few hours left of being a young 36 ;-)
RAG x x x
Saturday 18 October 2014
Slow but steady (ish)
I rode my bike today for the first time since getting banned when I was getting my chemo and Radiotherapy treatment.... bikes really are the best therapy.
5.7km to be exact (on the flat!) .... usually this it a very small number of km's in terms of me being out on a bike... today I felt like I was riding a 50km+ ride... it was hard work.... my body was really struggling and to be honest I nearly turned around at the 2km mark.
Its amazing how much my body has been hammered, despite being in the healing stage, I realised today I'm still along way from being at 100%.. I guess this will come (apparently with radiotherapy, the fatigue side affects can last for months after treatment stops). Until then I'm currently curled up on the sofa felling rather shattered and a little beaten up, but I'm smiling!!
I'm rather stoked at getting back on the bike... it feels normal! normal is good!
On another quick update.... I meet with the surgeon on Monday morning.....
signing off.....tired but content
RAG x
5.7km to be exact (on the flat!) .... usually this it a very small number of km's in terms of me being out on a bike... today I felt like I was riding a 50km+ ride... it was hard work.... my body was really struggling and to be honest I nearly turned around at the 2km mark.
Its amazing how much my body has been hammered, despite being in the healing stage, I realised today I'm still along way from being at 100%.. I guess this will come (apparently with radiotherapy, the fatigue side affects can last for months after treatment stops). Until then I'm currently curled up on the sofa felling rather shattered and a little beaten up, but I'm smiling!!
I'm rather stoked at getting back on the bike... it feels normal! normal is good!
On another quick update.... I meet with the surgeon on Monday morning.....
signing off.....tired but content
RAG x
Tuesday 14 October 2014
long time no hear.....
Its been a few days since my last post, which means I owe you a bit of a run down as to what's been happening since my last post....
A fair bit has happened since then and I've also rediscovered being in limbo again.
So since my last post I've been ticking along, the healing is going well, still not quite at 100% but I'm getting there.
I'm still really tired (one of the drags of having radiotherapy.... this could last for quite some time so I'm lead to believe)... nana naps rock.
I'm also starting to struggle with food, I'm actually feeling more uninterested in food now then when I was on the drugs and zapping... weird..... this treatment stuff does random stuff to your body. Mind you, I do realise its not just fluffy kittens, manis and pedis and chocolate treatment.... this stuff is brutal.
One of the other side affects of the radiotherapy has also started to kick in... unfortunately since the microwaving has occurred in my pelvic region it causes a thing called medically induced menopause by way of zapping all my hormones... yay for hot flushes! cancer sucks! Its kinda a weird situation to be in when you cant control what's happening to your body... one minute I'm normal temperature, the next its like a badly timed strip show with layers being flung off in all directions, shortly followed by me frantically running around trying to layer up again as I'm getting cold. ass some bad "Benny Hill" music (I'm showing my age now) and you have a great video clip... more comically sad than classy...
*** apologies for anyone that now has the Benny Hill song in their heads but here's a little top up....
Well I guess this is where I'm up to.... moving forward.... so onwards and upwards.....
RAG x
A fair bit has happened since then and I've also rediscovered being in limbo again.
So since my last post I've been ticking along, the healing is going well, still not quite at 100% but I'm getting there.
I'm still really tired (one of the drags of having radiotherapy.... this could last for quite some time so I'm lead to believe)... nana naps rock.
I'm also starting to struggle with food, I'm actually feeling more uninterested in food now then when I was on the drugs and zapping... weird..... this treatment stuff does random stuff to your body. Mind you, I do realise its not just fluffy kittens, manis and pedis and chocolate treatment.... this stuff is brutal.
One of the other side affects of the radiotherapy has also started to kick in... unfortunately since the microwaving has occurred in my pelvic region it causes a thing called medically induced menopause by way of zapping all my hormones... yay for hot flushes! cancer sucks! Its kinda a weird situation to be in when you cant control what's happening to your body... one minute I'm normal temperature, the next its like a badly timed strip show with layers being flung off in all directions, shortly followed by me frantically running around trying to layer up again as I'm getting cold. ass some bad "Benny Hill" music (I'm showing my age now) and you have a great video clip... more comically sad than classy...
*** apologies for anyone that now has the Benny Hill song in their heads but here's a little top up....
I'm also back to being in limbo again, as I am now waiting to hear when I get my operation to remove what is left of the cancerous mass.... for best results it is scheduled to be removed 6 weeks after radio and chemo stops... this works out some time in the next few weeks (I will have finished chemo/ radio a month ago on the 24th of this month).
Me being me, and needing to have some control and knowledge meant that I have spent the last few days frantically trying to find out when my op will be held... so far I have two pencilled in dates... October the 29th or November the 5th (think the only fireworks happening that night may be drug induced!)... I have discovered I have an appointment to meet my surgeon on the 20th of this month, so I should have a confirmed date then..... tick tick tick..... 5 days seems alive forever!
NB... Its about now I should confess that in my 36 years I have never spent a night in hospital (other than when I was born which doesn't count), or have had any surgery that has involved more that a local.... this is going to test my fear factor
Well I guess this is where I'm up to.... moving forward.... so onwards and upwards.....
RAG x
Friday 3 October 2014
Spice Girls, perms and wee drinking
I've been asked by a lot of people why I don't have my name on this blog or why I haven't announced it on Facebook (if its not in FB its not true.. isn't that the story).
people have aske is it because I'm embarrassed, or is it behacues I don't want people to find out.
To make things clear I'm not embarrassed, I've done a lot of embarrassing things in my life time... a perm, a replica spice girls metallic silver party dress (silver platform heels to match), several (hell I was a student in Dunedin) incidents involving alcohol fuelled awesomeness..... shit the list could go on. But one of these thngs is not identifying that I have cancer. I am not embarrassed I have cancer. Rectal cancer does not mean I have done anything wrong to get it... you cant catch cancer by doing something some "genius" has preached about, such as oral sex causes mouth cancer, underarm deodorant causes breast cancer or eating meat or unwashed non organic fruit will give you cancer.... with a high statistical rate you have a chance of getting cancer no matter what you do... so saying this I have to get it of my chest... I have not ever smoked cigarettes from my bum (well wouldn't that be the cause of rectal cancer? ;-)
I'm not ashamed I have cancer, I'm in a pretty big club of people..... I confess I am ashamed of admitting to have once had a perm and owned a spice girl dress!
I have a couple of reason for not making this public just yet.. I will in time.
Firstly I find telling people (and how they react) really stressful. Not everyone has been user friendly, I have told a few people and they have not replied to emails (I have a lot of friends who live overseas), or I've told people and the first thing out of their mouths is "when are you going to die?" or they burst into tears and I spend the next half an hour trying to make them feel better.... all of which is not helpful.
My second reason for not making this public is that I know that everyone has a cancer story, whether its your cousins gardeners dog walkers second wife's hairdresser, or its a close family member. Everyone's cancer and ways of managing it are different.
I'm happy for people to do what they need to do for them to get through but just like religion, I feel it is really important that people keep their thoughts and beliefs to themselves. I'm more than happy to talk about my decisions about treatment, but I don't what to hear that I'm making bad decisions from someone who doesn't have a health qualification. I'm doing what is right for me and my situation.
I don't want to offend anyone by telling them to fuck off, but being told that I should be humming Beetles songs whilst naked in the garden with a tinfoil cap on while drinking some random concoction of my own wee and fresh juices and ground dirt, is not helpful to my stress levels. Hence my lack of publically disclosing my current "health status".
I'm respectful to what everyone else's beliefs and values are that are right for them, so i'f like to receive the same respect for my choices.
Saying this I do plan of disclosing this blog to the wider world, and I will take the mask off RAG, but until I know what's happening and I have my next plan (surgery), I think my comfort levels are right where they are now.
so until next time, keep smiling at my embarrassment of impulse buying during the height of the Spice Girls...
RAG x
people have aske is it because I'm embarrassed, or is it behacues I don't want people to find out.
To make things clear I'm not embarrassed, I've done a lot of embarrassing things in my life time... a perm, a replica spice girls metallic silver party dress (silver platform heels to match), several (hell I was a student in Dunedin) incidents involving alcohol fuelled awesomeness..... shit the list could go on. But one of these thngs is not identifying that I have cancer. I am not embarrassed I have cancer. Rectal cancer does not mean I have done anything wrong to get it... you cant catch cancer by doing something some "genius" has preached about, such as oral sex causes mouth cancer, underarm deodorant causes breast cancer or eating meat or unwashed non organic fruit will give you cancer.... with a high statistical rate you have a chance of getting cancer no matter what you do... so saying this I have to get it of my chest... I have not ever smoked cigarettes from my bum (well wouldn't that be the cause of rectal cancer? ;-)
I'm not ashamed I have cancer, I'm in a pretty big club of people..... I confess I am ashamed of admitting to have once had a perm and owned a spice girl dress!
I have a couple of reason for not making this public just yet.. I will in time.
Firstly I find telling people (and how they react) really stressful. Not everyone has been user friendly, I have told a few people and they have not replied to emails (I have a lot of friends who live overseas), or I've told people and the first thing out of their mouths is "when are you going to die?" or they burst into tears and I spend the next half an hour trying to make them feel better.... all of which is not helpful.
My second reason for not making this public is that I know that everyone has a cancer story, whether its your cousins gardeners dog walkers second wife's hairdresser, or its a close family member. Everyone's cancer and ways of managing it are different.
I'm happy for people to do what they need to do for them to get through but just like religion, I feel it is really important that people keep their thoughts and beliefs to themselves. I'm more than happy to talk about my decisions about treatment, but I don't what to hear that I'm making bad decisions from someone who doesn't have a health qualification. I'm doing what is right for me and my situation.
I don't want to offend anyone by telling them to fuck off, but being told that I should be humming Beetles songs whilst naked in the garden with a tinfoil cap on while drinking some random concoction of my own wee and fresh juices and ground dirt, is not helpful to my stress levels. Hence my lack of publically disclosing my current "health status".
I'm respectful to what everyone else's beliefs and values are that are right for them, so i'f like to receive the same respect for my choices.
Saying this I do plan of disclosing this blog to the wider world, and I will take the mask off RAG, but until I know what's happening and I have my next plan (surgery), I think my comfort levels are right where they are now.
so until next time, keep smiling at my embarrassment of impulse buying during the height of the Spice Girls...
RAG x
Thursday 2 October 2014
Healing!
So as quickly as things started turning pear shaped, things have started to be on the up. YAY!!!!!!!!
From being at the stage 3 days ago that the hospital was looking at needing to do a blood transfusion due to the decreased "goodies" in my blood and an increase in losing the goodies due to the wounds I have, through to today where the skin looks 110% better (yep, maths is my strong point!) and I'm going to start decreasing my pain management tomorrow.
Don't get me wrong I'm still not 100% (far from it... I have some "interesting" internal burns and the cells are still stripping and dying off... this is called sloughing - FYI not as cute as the name sounds), but this is a biggie and its making all the difference to my mind set!
Its finally healing!!!!!
*happy dance (if a bit gingerly)
RAG x
From being at the stage 3 days ago that the hospital was looking at needing to do a blood transfusion due to the decreased "goodies" in my blood and an increase in losing the goodies due to the wounds I have, through to today where the skin looks 110% better (yep, maths is my strong point!) and I'm going to start decreasing my pain management tomorrow.
Don't get me wrong I'm still not 100% (far from it... I have some "interesting" internal burns and the cells are still stripping and dying off... this is called sloughing - FYI not as cute as the name sounds), but this is a biggie and its making all the difference to my mind set!
Its finally healing!!!!!
*happy dance (if a bit gingerly)
RAG x
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