Tatto 1

so i have wanted a tattoo for as long as i could remember and had a heap of ideas but none really grabbed me that much either then the day after i was admitted to hospital and i was flicking through the cancer council info booklets (excellent little info books about all different things you need to know about cancer and treatment) i was looking at the daffodil symbol that use and suddenly thought bingo when im done with chemo im getting one on my left wrist to signified that i survived cancer/chemo and it was also perfect cos daffodils are my fav flowers
anyways i let my peeps know ( a friend was going to do it ) he said sure after chemo NOT during and last night he said im free tomorrow so up we went to get it
so its dainty and cute im going to attach a picture of the symbol and will add a pic when its healed
didnt hurt that much at all!! mum and Craig where there so they got one each too now i just need to figure out the places for the rest!! ......

Last Chemo .....for now, hopefully forever

so i had my last chemo on the 29th of july. i was very excited and looked forward to this day coming, but when it finally got here i was sad. i had brought chocolates and cards for all of nurses and almost spent the whole day crying. it was very surreal getting to the end but id be naive not to know that it may come back again at some point. i'll have to have PET scans every 3 months for 2 years then every 6 months for the next 3 years then every year and eventually every 2 years. i might feel like im always will be watching my back lol.

i had a ct scan a few days later and it all looked cleared but am yet to have a PET scan yet i need to fit it in when i can. 

adrian the bad luck chemo token

i had chemo on Tuesday and Adrian was going to come. i had actually forgotten to ask him to come until Thursday night, so he had to go to his boss on Friday and ask for Tuesday off, after the public holiday Monday. oops. so Adrian has only been to one chemo day and has met me at chemo twice before. we get there on Tuesday. my doctor is in London for two weeks so i had to go up to the step down unit to get my blood test. the head nurse looked at me and said how was i feeling i dont look to well. i had woken up with the flu on Monday morning, i had caught it off Adrian , who only had barely a cold, i wouldn't even know he was sick had he not told me. i tell sandy (the head nurse) that i had caught the flu and had only had 3 hours sleep because of this. she said hhmmm ok, we might not do chemo then. 5 minutes later she sent me home saying they didn't want to give me chemo which was only going to make me feel worse tomorrow morning and to come back next week.
this has been the 3rd time my chemo has been delayed and these 3 times have all been times Adrian has come with me. there has only been one occasion that he has been to chemo where i have actually gotten chemo! freaky!
so now im calling him but bad luck chemo charm. but dont take this as i dont want him there. i do! i just hope it dosnt get delayed again i cant afford it to be delayed as it will interfere with my holiday.
here is hoping on tuesday when he comes with me it dosnt get delayed lol

Chemo Sideaffects Sucks!

i was originally going to have this is as my status in facebook
but decided to vent here instead so i didnt get a million msgs on my wall and inbox asking what is wrong

so i woke up all crappy today which is unusual for a day after chemo i normally get a delayed reaction of nausea that hits me on Thursday or Friday.

so i was going to post it as my status but thought it would be best to do it here
anyway these are the side effects i could live without

1. nausea it sucks and i have a low tolerance for nausea lets leave it at that lol
2. the 5 tablets i have to have to get me going in the morning then tablets during the day to keep me going that dont take it completely away and i have to have food with it which is hard when ur nauseas
3. the bad taste (like metal) u get in your mouth that changes the way everything taste and turns u off some foods and makes u like others arhh!
4. the heighten sense of smell which sounds cool like a super hero or something but sucks when u put ur fav perfume on and it instantly makes you want to be sick and u really cant wash it off once its off even more irritating if u work it yesterday ( i decided against the match lipstick once i had that reaction lol)
5. the tiredness and exhaustion u have all the time, like today i fell asleep for 3 hours and when i woke up whwn adrian got home i thought it was 5.30 on thrsday morn and adrian was leaving work without saying goodbye. or two weeks ago when i slept all friday i fell asleep on my bed in the middle not even on pillow or anything. and two days before that feel asleep in front in my computer chair ( thats a bad influences i have picked up from Michael a fb friend, luckily today i new i was falling asleep and went up to bed before i did in the chair again. Lucian would of thought i had keyboard marks on my face.
6. putting on weight so im in between sizes again and have nothing to wear :( enough said !!!
7. losing my hair, makes me cold now , and leave me me with less clothing options , hair goes with everything!! actually ill only winge about the hair on my heads its cool not having to shave
8. bad memory i have shocking memory at the moment i forget days and what i did and what im doing i dont even remember the next thing that was on this list lol
9 so ill make one up (im actually not lying though) my uncontrollable thirst god and its not for water that i absolutely love and now cant drink cos of the mental taste (this has now turned into tow reasons) no i cant get enough coke, well diet coke, with ice, and the best cokes are the extra large ones form maccas i drank 3 of the the other day one after the other man which leads into my teeth feel like they are just going to fall out! god a big fear
10. now i remeber the real next on the list which was suppose to be up a bit higher so it can slip in unnoticed amongst the other gripes since ill be tagging this one
is sex now that im on chemo which is toxic chemicals beeing pumped into my body we cant risk passing these on to adrian or falling pregnant ( ohh the irony!!) and i cant go on the pill nor do i really want to so we had to use condoms. yik anyone who knows me i dont like them everything about them and they know why so i wont go into it too much information lol (however im not agisnt other ppl using them for safe sex purposes but since im married i cant hate them if i want to )
11. cos im on chemo i cant fall pregnant so its putting my life on hold! it sucks i wanted to be on maternity leave by now (with actually the 3rd baby!) but instead im on sick leave so this sucks and now im not working and in debt its going to hard to save and justify to others going back to ivf after chemo. arrhhh!

okay enough winging and im typing this in Siberia (which is actually warm tonight and i have no jukebox cos the net hates me using i tunes at the same time) so i keep getting bumped off thank god for auto save!!!

ciao (omg influences from aus chat yet there is Colombians in there again!)

jamata ( i wish i could speak fluent Japaneses

пока (ok i dont know russian i just put it in since im tagging Michael)

tchau ( Portuguese completely random )

okay enough byes im turning of the translator

its not all about the hair.....ok maybe it is

when i was first diagonsed with cancer, and chemo was on the cards, i didnt really care about loosing my hair, i asked my heam and she said i would loose it, then one of my chemo nurse, said i wouldnt, loose it and by that stage i kinda want to, for 3 reason, "to get the full cancer experience", to see what i looked like without hair (when would i have the guts to satisfy that curiosity) and i could experiment with different hairstyles as my hair was growing back.
then i began to loose it, and all the reasons to loose flew out the window and i did care it fell out. i was worried because i like my eyes and my smile and i thought they loose that with my hair gone, and i dont think i really smiled for a few days after it. ppl said i was lucky cos i have normal if not small ears. i hated how i looked a lot more like my brother now. no one tells you u dont actually stay bald, my hair grows back in patches, which looks crap. and when it was falling out i felt like a dog malting. my sister, jen, jamie and adrian cut and shaved my hair after it fell out too much. when i started going out without my hairs and wearing scarves i hated it, it wasn't that i fell insecure or anything it was just now everyone i looked at or everyone that looked at me knew i had cancer, its like a walking display bored. i know resent putting them on somedays, and somedays i forge that im wearing them at all. what i hate the most is i think i look fat without hair, which ppl are going to say is crazy talk, but i really do think it makes me look chunky. and it has nothing to do with the 15 kilos i have stacked on since chemo began, which eveyone thinks is fantastic, but i loved how my legs and but looked when i was super slim, mmmm..........

lung infection

when i went to my nan's last thursday i noticed that the air was making me feel uncomfortable when i breathed. then over the weekend i had more troubles breathing like when i was walking up the stairs at home, yawning, talking at my normal pace, being outside in the cold. and twice i had real trouble catching my breath.
when i went in to chemo on tuesday i knew i had a lung function test (i actually didn't until 6th of may but thought it was on tuesday) the test showed some difference since the last time and so my heam sent me for a xray.
then when the scans came back, she came up to me in the chemo suit and sent me for a ct scan. and called down my respiratory doctor to speak to me.
the possibilities where either i had an infection in my lungs (requiring antibiotics) or one of the chemo drugs were causing toxicity in my lungs (requiring steroids)
the radiologist couldn't decide which it was so i was put on both. two antibiotics since im allergic to penicillin. and my chemo was held off for a week to give my lungs a break, and from now on the drug that causes the lung toxicity will be left out of the chemo combo.

Nan

on thursday mum, jack and i went down to my Nan's in New Berrima to have lunch. mum and jack wanted to go on the train, so we went on the train, its soo long. it takes an hour and half to get to moss vale. a train trip i made back and forth for 4 years while i was studying in moss vale. i took jack on the train when he was 2 to hand in an assignment and he cried for a 3rd of the trip but this time he enjoyed it ( well he is 5 now!) i read him the cat in the hat. but by mittagong he was asking "is this our stop?"
anyways we get to mossie and my uncle picked us up. my nan had chemo in bowral so we waited for nan to come home.
then we went to mossie to have lucnh
man this sounds sooo excited so far!!
after we had lucnh we came home with my aunty gill and she told mum and i that my nans doctors wantb to stop her chemo and after that they will only give her a few months to live. and they plan to stop the chemo in a week or two.
stupidly i was a bit shocked becos nan has always conveyed that she is getting better, and is healthy ( apparently that is the chemo) i didnt think she would be cured but i didnt think it will happen so quikly either.

tired exhausted

i have been tired and exhausted all week this week, i hardly slept on the weekend, then all week i had normal hours of sleep, but woke up totally exhausted and tired with my body aching.
so i spent most of the week laying around wishing i could have a massage,
i got one on wednesday but by the afternoon was needing another one!
and still now i need one!

Pet scan results, Horton hears a who, and boots and costumes

i got my pet scan results back yesterday. my heam says it is all inactive except my spleen, im happy but i was expecting the good news. but i still dont know what to think about it all, it stills feel like i was just diagnosed, i WAS just diagnosed!
so hopefully i will finish off my chemo cycles 3 and half to go thats 7 treatments. then i will be able to get the all clear to fall pregnant and will!

i took jack to see Horton Hears a Who today which was a good movie, i love Dr Suess books everything about them, the linguistics, the illustrations, and the infinity of Dr Suess's imagination. i grew up with my dad and mum reading them to me in fact "The Cat and the Hat" was the first book i read

later i met up shopping with my friends and cousins we had lunch and shopped. i decided i needed long boots today i have always wanted a pair and have shopped around for 8 years trying to buy them, but have never found a decent pair that fits but now my legs are slimmer so i looked today and found some!! yay and they were cheep. im using them as part of a costume for Adrian's 21st. its a sinners and saints theme so im going as a dominatrix or sinner of some sort, i have the boots, fishnets, handcuffs, and wips ect. i looked in bras and things for some costumes tried on two, the skirts were a bit short. we later went to a adult shops and found really expensive crappy costumes. so ill probably go the ones in bras and things

anyway im in chat so ill get going

cia till next time

Petscan

i had a pet scan today to see if the chemo is working
i had a full entourage mum dad and paul

chemo day!

i had chemo again today the start of cycle 3, 5th treatment.
i cant believe im almost half way through!
its still all unreal.

i had a very busy day
up at 6 im was tired still i had 6 hours of sleep, but i only had 3 the night before.
at 6.45 a volunteer from the leukemia foundation picked me up to drive me in it was absolutely packed on all roads so i got to the hospital about 45 mins late. but i was straight into the blood sisters then straight into my drs. then i had a chest xray, i was in the radiologist for about 15mins! thats like a RPA record!! then i went over to the page pharmacy and dropped my script off so i was only there for 5mins! another record! then beth and i ( i didnt mention above my sister came today) went to have breakie at the cafe. i then rushed up to the chemo unit and met my social worker, the cancer council is paying my mobil bill for this month and im getting $230 worth Woolworth's vouchers which is almost a month worth of groceries for us.
my chemo was at 11 but i didnt get it till 3. then i got out at just after 5.30. and the same leukemia foundation guy picked us up.
now im really tired and tired and exhausted!!
i should go off to bed!

finances finances

man its been tough with no pay
i applied for centerlink payments and was rejected because they claim adrian earns too much,but we used all his pay on bills and had no pay left and still have bills, i lodge an appeal today so hopefully it gets reversed.
i also looked into getting some of my old super out.

im getting a lift on tuesday and thursday to rpa from the lift is from the leukemia foundation, i kinda feel guilty uterlising this service because i have a car i just cant afford the petrol.

our washing machine blew up too its just all happening lol

my new book is out so adrian brought it for me today yeah!, i love these books from linda fairstein its like reading svu i cant wait to get stuck into it.

Finding Lymphoma

In January i got back to work and my boss was scared how skinny i had become, i had lost more weight over christmas (i know who losses weight at christmas!)

she told me to go to the doctors to get checked out it was the 8th of jan

i went in and talked about the weight lost and the lack of appetite and the exhaustion/tiredness i was feeling, i spoke about my back pain, the doctor checked out my lymph nodes, n0 swelling, 

then i coughed he asked how long i had the cough for and i had said about 8 weeks so he sent me for a chest x ray.

on saturday i went for the chest x ray i thought they just find bronchitis or something like that. after the radiologist looked at the films they came to see me and were trying to get in touch with my gp to run a ct that day, he told me he thought it could be a typical pneumonia or another lung infection. he couldnt contact my gp so i was given the films and told to go to my gps asap on monday so he could order the ct. i read the report on my home and saw among the possibilities of pneumonia was lymphoma. a google search that night told me lymphoma is cancer and falls under blood disorders. i checked the symptoms and sore i had all the symptoms, so i was officially freaked out

on monday my gp ordered the ct. and i had it on tuesday. by tuesday afternoon my gp was saying lymphoma. (the 15th jan my grandfathers birthday)

and i was sent for a biopsy to confirm the next day. 

i had a fine needle biopsy on wednesday and my gp refereed me to a hematologist at RPA. that afternoon the results were back in saying inconclusive.

on friday i went to see my heam. she consulted with a respiratory  specialist who thought it might  be TB so the following tuesday i had a bronco-spy where they took biopsys from my lungs again inconclusive and no tb,

on wednesday i had pet scan that showed swollen lymph nodes in my neck, under arms, chest, lungs, spleen, stomach and surrounding my spine and my groin

on thursday (31st jan) i had a further ct and a biopsy on my groin

that afternoon i was admitted to hospital and lymphoma was confirmed 

hodgkins the next day.

while i was in hospital they started me on steroids, i had a bone marrow biopsy, a mri scan and a biopsy on the lymph nodes in my back. 

and i started chemo (6th feb)

i was officially diagnosed with Hodgkin's Lymphoma stage 4B

i was told ill need 6 months of chemo 6 cycles with two treatments in each cycle 2 weeks apart.

i have since had two full cycles, 4 treatments. 

Lymphoma The Begining

i decided if i was going to talk about my lymphoma (what else is happening to me these days??) i should start at the beginning.

where to start?

i dont even know!

how about when i finished TAFE in the end of 2005 i was weighing 110 kilos! i hated what i looked like and was uncomfortable in my skin, but at the same time did not realise i was THAT big.
in January 2006 i got a job at a preschool and i started pulling the weight off, i had also cut down my sugars as it was scarily high and my fertility doctor said i needed to bring it down and loose weight if i hoped to fall pregnant (we had been trying to fall pregnant unsuccessfully since July 2002 and had been refereed on to IVF Australia when i was diagnosed with Polycystic Ovary Syndrome in march 2003.) By October 2005 i weighed 89kilos and had joined the gym.

but thats not where the lymphoma started but the weight lost hid a symptoms

in January 2006 i started having back pain, i started using paracetamol to ease the pain and at first i couldn't even swallow panadol i was crushing them up on teaspoons! by march i was getting pain every day i was taking nurafen plus and using heat packs. i had had a ct scan and xray on my back all clear and we couldnt pin point an actual injury.

during 2006 i continued to loose weight it was great and my back pain got worse.

during 2007 my back got worse and worse i couldnt get off the floor properly i was sent t o a physio. i continued to loose weight i was down to 75kilos by my birthday

i had under gone 5 cycles of IUI (artificial insemination) all unsuccessful.

when Christmas came along i was 60 kilos. my appetite was smaller i thought because i was smaller it became smaller but i was finishing any meal!, i was exhausted really exhausted i spent most weekends falling asleep on the lounge and just wanted to sleep when i got home i had lost momentum at work as i was so exhausted. i just thought i was so exhausted because it was the end of the year.
i had a dry cough that was causing heavyness on my chest i went to the gps and got anti biotics for it.
every night i was waking up drench in sweat which i have never had experience before
i wasnt shaving my legs because they were soo itchy but i always had sensitive skin.

these were all symptoms of lymphoma little did i know

when did the lymphoma start?

i dont know.......

Chemo day

i had chemo on tuesday and this is how the long day goes!

6.00am wake up soo tired from lack of sleep ( i dont sleep the best anymore)
have a shower get dressed,

6.20 in the car driving to Newtown/Camperdown/Redfern where ever you like to say RPA is

8.10 arive at the carpark

8.10 check into the heamatology unit, they get my blood order ready and put me in the cue for the blood sisters. im behind 12 people. blood test have to be run before i see my doctor so she can order the right doese of chemo and check my white cells if they are too low my chemo gets delayed. they are very busy since its tuesday a popular chemo day and the receptionist and the nurses are arguing

8.20 after checking in the waiting room is filled and im starving because i have 12 people in front of me i go and have some bacon and eggs in the cafeteria sooo yum.

8.40 i finish breakfast and head back to the waiting room. i play brain trainging on my ds and listening to the young copules conversation, they are lucky if they are 20 and have just started dating.

9.15 i get called in for my blood test. exciting they use they butterfly shringe so it dosnt hurt and i let them take it out of my right arm.

9.30 peter (adrians dad) arrives

10.00ish i go see my doctor, claire my doctor is on holidays so i have registar (if you watch american medical shows our versions of residents) her name is ming hou.
she checks me out and orders my chemo and all the anti nausea drugs whiuch is confusing for both of us since she hasnt done mine before.

10.30 we head over to the page building. this is where the out patient chemist is and where i need to get some of my anti nausea drugs and my white cell injection from. the page building is a decrepit and depressing building i hate going into and im glad that the heamotologist unit has been moved to the main building now ( not that i ever went there when heam was in the page building)
the way the chemist is run is toatly maronic!
there is 3-4 chemist working at any one time.
you go up to the in conter if no one is there you take a number, then you wait to be called, you then take your script hand it in get a new number and a docket and go to the cashiers counter and pay for the drugs. you can only pay cash or credit (who dosent own a eftpost machine these days?) then you wait while the chemist gets your order ready.
okay that description doesnt sound long. but it is. the chemist are soo rude and if you dont know the procedure they yell at you. there is a sign above the in counter explaining the procedure and that the wait is 45mins. ha on a good day.
i walk in and its packed!! i take a number, yea its one and wait probably 20-30 mins to be called up. then step over to the cashier who takes about 10mins (i swear she was soooo slow!) to wright the numbers down from the credit card (they do this because lack of eftpost machine!)
i take a new number 35 and sit back down. the guy next to me has number 29, 10 mintues later they call out number 24! oh my god its 11.10 am i ever going to leave the page building?!
there is an anoying 3 yr old with his mum who keeps yelling and peter and i start joking with this lady who just came in about how long it takes in here.

11.50 i leave peter to pick up the meds and fill my other script at the normal chemist and head up to glouster house ( its now a house. its a building next to RPA and is sydney cancer clinic the chemo suit is on level 5.)
i check in at reception and make an appointment for a fornights time then go up to to check in with the chemo nurses and give them my medical chart.
there is a small problem with my med order i take Emend (anti nausea drug) an hour before chemo then two days after and ming has order the wrong dosage of emend so the nurse has to get her to fix it.
12.15 i take my emend and wait while doing mega hard sudukos and the chemo pharmacy starts making my chemo
1.00 peter arrives he finally got out of the page building! i check my drugs and realise i was only giving 4 antivan which covers 2 days and i need enough to cover me for the fornight. i call heam and page ming to come up with a new script for antivan.
now my chemo is a special chemo (its an agressive form called ABVD, its made up of 4 diffrent drugs) so i need accreditated nurses to give it to me. and there is only 2-3 nurse who work there that are accreditated to give me my chemo.
1.30 my chemo is ready and taking away to be put in line
1.45 i check on my progress , im next but i need to wait for the my nurses.
1.45-2.50 im waiting and i dont really care how long it is peter has made a complaint to the team leader nurse and has got a number for his supervisor.
2.50 glenn my chemo nurse comes and gets me. i get nice and comfortable in the chair,
glenn gives 6 anti nausea meds and checks all the chemos
i then get caneulaided, doesnt hurt glenns good. i get hooked up to saline and the first 3 chemo drugs get shringed in with sailine. this takes half an hour.
3.45 the last chemo gets hooked up to the drip and saline i msg adrian to tell him to meet us at glouster house to come home
6.00 yea my chemo is finished and we head home!