This week I have made a decision that this is not going to bother me, after a fabulous weekend off from all treatment, as I only have to do it on week days, I made the decision that the nausea is not going to be a problem, and to be honest I haven't felt sick since last Friday . I do however feel a little tired due to the radiation but that's nothing new than being a parent. I just rest when I can and power on through when I can't ..
So the regime of the treatment remains the same three chemo tablets morning and night and then daily radiation. Which I have down to a fine art now and can be out of the hospital in about half an hour, or so, depending on bloods that need to be taken or dietician reviews. The staff are Amazing and I really enjoy the jigsaw puzzles out the front to keep us patients from thinking about what's really happening to our body's . Andrew commented last night how he loves that I go to radiation smiling and come out smiling then he knows I still ok. I haven't lost Any weight,,which is a big deal to the planning of the radiation, in fact I put on a kilo, thanks to Andy's home cooked meals, of a weird variety, due to dietary needs.
last night I actually went out for a hour to spend some time with my beloved students as they have finished their studying and become fully fledged nurses next week. It was so nice to see them all relaxing and enjoying themselves, although some were enjoying themselves too much. Little disappointed Symone didn't sing but next time. Hahahah. Hopefully they didn't mind me crashing their party, but they invited me.
Mum and Graeme are overseas in Israel at the moment and hope that they are being careful, but still having a wonderful time.
And this weekend is Andrews party and can't wait to see everyone start arriving tomorrow , it'll be so nice to see everyone and can also let them see for real that I'm doing just fine. Love that a huge amount of people are coming especially my nan and pop, all the way from gosford, on the train, that's really special .
So until next time please keep me in your prayers, please know I am ok, and am fighting the good fight every second, but it's amazing what you mind can tell your body when you try.
Luv you all Emma .
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Some bright spark ( that would be me) thought that it might be nice for us to go whale watching together with our neighbors, nine people got in the boat and five had their heads in the buckets the whole time, four due to motion sickness and one apparently from self inflicted measures from a busy Saturday night. And it wasn't Andrew. Later that day I became very ill due to my mini bowel obstructions, which cause an awful lot of pain for about five hours and many a request from andrew to take me to the hospital, but me refusing as I didn't want for this to be a reason to cancel the chemo and radiation starting on the Monday.
So not a good way to go into the start of everything on Monday morning.
Well the treatment started yesterday with me taking the oral chemo at home in the morning and having radiation at the hospital at half ten. The only problems that arose was nausea and a unbelievable heat down the front of my face ( just between my eyes and down to my mouth). Very strange indeed.
Our problem we face now is that because my tumor blocks 95%of my out passage I can not afford to become blocked at all during the next seven to ten days, which presents a problem when the radiation is going to make the tumor swell in size. So we are praying that the chemo does its job and helps to reduce this swelling so the 95% doesnt get smaller.
So we met with a dietician ( who was sssooo lovely ) today who told us what I can and can't eat for the next two weeks, and probably for the next six months until all this is gone. This adds to poor Andy's stress level as he try's to figure out what I can and can not eat. People that know me well will understand when I tell you I can not eat pineapple, mango, cucumbers, peas, passion fruit, strawberries, blue berries, that this truly is going to be the tough part. But the good news is I can eat as many bananas and chocolate as I like hahahahahahaah.
Today being Tuesday, found myself to be having problems with the anti nausea meds as it actually made me feel unwell. so today I went without it and felt a little better. This evening though I had some maxolon, another type of anti nausea tablets, which usually makes me fall asleep but so far so zzzzzzzzzzzzzzzzzzzzzz.
So I need prayers that my new diet is going to work and we complete the radiation in 4.3 weeks.
My new motto this week is.
" I can do all this, through him that gives me strength" phillipians 3:14
Talk soon luv Emma
P.s really appreciate all well wishes on Facebook, luv you all.
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Every now and again someone touches a chord,
With a warm open smile one can only but laud,
So to hear such a persons in need of some luck,
Makes me glad that she also is blessed with great pluck,
Having known her not long has not hindered my view,
That this lady's a diamond and a friend oh so true,
So I offer these words as a token of hope,
That her ordeal will prove just a kink in the rope.
From Chris , our crossing guard.
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I have found this to be a very hard week at present, as I find it hard to remain patient and not lose my temper, full well knowing that the doctors are doing their very best to plan my attack for me. The best thing about this week is the realization that I am well loved.
I know that my family and Andrews family love me dearly, but it's those that surround us on a daily basis that I never thought would think about me let alone care so much.
The first thing that happened this week was that at the medical centre where I used to work where many dear friends are, they learnt that I had chosen the oral chemo version of treatment as it would be less invasive, less noticeable - especially for the girls, (no Picu line), smaller risk of infection, little affect on my heart ifnany, but it costs a lot as not yet approved by the powers that be. deb and Trudy and a few others have taken it upon themselves to help us pay for it. Now I no longer work there but I must have made an impression as they care deeply about me, and are going to all lengths to help us. For this I will be forever thankful.
Secondly a man at the girls school ( he is the crossing guard at the school), he and I have been chatting every day now for this year and have a friendly banter going usually about the bulldogs flogging some other team, or other stuff. Now Chris must have noticed that I must have looked a little down and probably not so bubbly as usual. So one day he asked me what was wrong. I told him about everything to which he started to get a little teary. He gave me a lovely hug and hoped that all will be ok in time. Two days later Chris wrote me a poem , entitled " A friend's wishful sigh", this completely broke me down as I starting sobbing at the school crossing. Such a wonderful poem. I will share it with you soon.
Our wonderful neighbors organized a fan to be out into our home to help dry out from under the house, so that the moisture spores don't hurt me once treatment starts.
Then other people whom I have never met, start sending us gift vouchers that will help us a we go along this journey. My thanks goes out to those people whom I only know as Sue from Baringa Private Hospital and a special lady at Mum and Graeme's church.
A dear friend of Andrew's from Sydney has come up for the week to spend time encouraging and cheering us up. Love you lots Macca.
Then today I receive a phone call from a special couple in my life, the parents of my beloved late brother in law Nathan, whom I love dearly. They cheered me up no end, and it's so nice to know they are thinking of me too.
Then today my old boss, from Tamworth, Copperart, where I started work as a fourteen year old comes to visit us at home on his way back through from Queensland to Dungog.
Then receive a lovely card and gift from Step sister, my lovely Michelle that tells me not to forget that she loves me very much.
Keeley's teacher sent me a wonderful little book titled " be strong" ( two little words that mean a lot to me as they were the last words Nathan said to his children, my nieces and nephew) filled with many encouraging words to help me along.
A student of mine brought me veges from her own garden to help us , such a wonderful blessing to have her as a friend.
In between all this Andrew and i have received many an encouraging call, text and emails and many a neighborly visit seeing if theres anything that they can do to help and wishing us all the best and to continue to fight hard.
If anyone doubts the state in which this world is in , let them come to me and I will tell them that I am surrounded by love and nurturing and that there is lots of good things in this world.
I will leave you with two pieces from Louise's book ,
Surround yourself with people who believe you can
Lend me your hope for a while. A time will come when I will heal and I will lend my renewed hope to others.
Love to you all
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Had the most wonderful weekend - Bec and the kids , Mum and Grandpa Graeme, came up from the Blue Mountains and Newcastle to see us all before we start challenges ahead. Was a wonderful distraction for the weekend to have the kids doing normal stuff and the weather was perfect so that they could go swimming with their wonderful cousins. We went to the koala park where they rehabilitate sick koalas, and had all the seafood I could eat at the buffet at bowling club.
Was very sad to leave them as I know they we are that little bit closer to starting chemo and radiation now. I promise that I will do everything in my power, Abbey, to beat this. I know you are scared but I am ok. Can't wait to see them all again in Sept.
No news from cancer institute so they must be still working hard at planning their destruction of this horrible tumor
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Today we had meeting with chemo doctors who have brightened my spirit just a little. They believe I can have the chemo orally so that I don't have to have a Picu line or portacath inserted as this would be too distressing for my girls to see me with for six weeks straight. Plus it also decreases my risk of infection along the way.
The funny part of the meeting was when he was asking me about lifestyle he asked me whether I smoked or drank and to both I could reply "no", and he says really? And I replied well the last time I got drunk (which was 16years ago now) I met andrew and well I ended up with him last time so why would I do that again. To which he then laughed and laughed and said that's the funniest thing he has heard all day. Prior to that I thought he was a little scary but, was able to break the ice.
Had ct scan again yesterday and now have three tattoos on my hips and tummy, so that they are able to properly MAP this horrible thing and zap the living daylights out of it.
The doctors seem to think this a rare little mutant thing my body has developed, as there is no family history of it anywhere. Now I have watched X MEN and wonder why I don't have some kind of cool mutant thing , like storm or laser dude eyes, but instead I have this. But I guess that as long as it never affects my daughters I am happy to be the mutant.
And so now we wait so they MAP it properly and start the long road to recovery.
But I'm ready to kick its butt now.
Luv to you all Emma
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Just a quick addit, my mind not working particularly normal at present, my tumor is classified as a t3 to t4 bowel cancer, sorry for confusion
Today we are heading out to cancer institute for round two of ct and MRI and further tests that will help doctors to MAP exactly the size and content of tumor,
Wish me luck
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On the 14th August, we were told the worst news that we really did not expect. I had been feeling a few discomforts over the past fours months, with a few incidents ( which I thought was food poisoning), but really thought this was only going to simple haemorrhoids to be honest. Thankfully we have a fabulous doctor, who was obviously in shock as much as we were, as no family history exists of this anywhere, who plans to look after the best way possible. Since then, over the past week I have subjected to a number of tests, from CT's,MRI's and blood tests coming out the wahoo. My arms are full of bruises but I am doing ok. From here it looks like we have an intense year in front of us, the plan so far is as follows;
Continue test for further two to three weeks
Then commence both radiation and chemotherapy at the same time. The radiation will be daily mon through fri, and the chemo will be through Picu line (or technical cannula that is much longer than a normal cannula),the chemo will be continuous 24/7 through a mini pump in a little bum bag like device as it will permanently attached for the whole six weeks.
During this time I will become increasingly tired and may or may not lose my hair etc. I have been planning Andrews 40th party over the last couple of months and plan to continue with this, as I may be three weeks into treatment and hopefully I will be coping well at this stage.
After these six weeks then we wait an additional six weeks to let the radiation continue its thing.
At this time I will be heading into the hospital to have a bowel resection, which will hopefully remove the whole tumor , I will be left to heal for further four weeks, before commencing an intense 24weeks of chemotherapy, with possible surgery at the end to fix any problems that may come up during this whole period.
I plan to attack this situation by looking at it six week intervals and get each one done before thinking or worrying about the next one. while we didn't find this at an early stage the doctor' s are fairly confident that , due to my age and the fact that I generally live a healthy life that all will be ok in the end. ( Thank God for my diligent designated driver lifestyle, I knew there was a reason that I didn't drink or smoke).
I am very lucky at this time that Andrew's work is incredibly supportive and have given him all his sick leave as carer's leave so he will be with me through out this first six weeks and after the surgery to help out at home, as all I plan doing is fighting this nasty disease and recovering completely. Also Andrew's father has taken the first five weeks off as annual leave so that he can help to look after Lacey during my treatment and appointments.
The two older girls know about most of what's happening but we only just found today about plan so we will let them know in due course. Lacey just knows that the doctors are "fixing mummy's sore bum".
I realized after losing my beloved brother-in-law a couple of years ago how important it is to have a blog so that others will know what's going on and know at what times your prayers will be most needed.
I have four main reasons to survive this thing
They are my beloved husband and my three adorable daughters whom I love beyond all measure. Please have them in your prayers too as they travel through this with me.
Love to you all Emma.
Thank you to everyone for your support
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.