Chemo

AC
was the first chemo drug i was put on. I had to have this every 3 weeks for 4 sessions.
This one took 3 months

I found this one to be really tough.
I ended up spending 5 days in hospital in isolation after 2 weeks due to infection that i caught from somewhere.

Things i learned

You go in to the day stay unit where everyone is in a big room it is quite scary but everyone is really friendly. the nurse comes over to talk you through everything and go over all the drugs you have to do they check your name and birth date. then they hook you up with your iv line which goes in your hand. this first chemo takes around 3-4 hours because they want to keep an eye on you and talk you through everything Before this happens you have had your meeting with your oncology Doctor  I recommend that you go check out where chemo is held because the first one is scary you have no idea what to expect.
this one you have 2 types of chemo together and then you have lots of fluid to flush it through.

Your immune system and white blood cells go up and down they go down after chemo then they go up but what they didn't tell me was they go back down again around the second week.
I found smells and sounds over powering they were over exaggerated that i couldn't stand perfume or the smell of food cooking.
I just slept for the first few days after chemo.
by the third week i was feeling OK again only to have to go back in and do it all over again.
I thought i was going to work while doing chemo but after being in isolation and getting delayed for a week i decided that my health was worth more and that i didn't want to delay any more that i had to i just wanted to get on with it so i stopped work.
I started to lose my hair around the 2nd week. Make sure you have a hat to wear to bed as your head will get cold.
I wanted foods with lots of salt so lots of potato and gravy. or i would put salt on everything just so i could have some kind of taste of something.
drink as much as you can i had so many bottles of different juices, water, fizzy because i would open one it would be good then i would go to get it again and not want to drink it. But you need to keep your fluids up no mater what to flush out the chemicals.
Everything tasted the same and you get a nice thick coating of something in your mouth that doesn't go away.
I made a batch of half baking soda and salt in a jar and just added a teaspoon to hot water and rinsed my mouth a few times a day. staying away from any mouth wash that had alcohol in it as it drys out your mouth more.
The steroids getting used to them and then coming off them is fun you can get quite moody and emotional but this is OK.
Its OK to spend days in bed.
I found that my veins like to run away so before chemo, so drink water and i always head up with a hot water bottle on my hand to warm it up and get the veins out.
Don't be afraid to talk to people at chemo, other people are going through the same feelings as you,  you ll find that they are more that willing to help and are more than willing to talk to you i was quite lucky i made some good friends at chemo and it was never boring we tried to make chemo fun, well as fun as it can be.
As i was going through all this lot of chemo i found the side effects lasted longer each time i had it and I started to get anxious before i would go up. I got some Lorazepam which helped to calm me down.
Always ask and talk about things nothing is stupid.
And i always had anti- bacterial hand sanitiser in my bag and car and by my bed and i used it constantly you ll be amazed how many people sneeze and cough when out and then touch everything.
you just have to do what you can to keep your self healthy.
I stayed away from sick people as much as i could Even if someone had just a runny nose.
you get used to what you can and cant do pretty fast.

Paclitaxel

my 2nd lot of chemo
This one i have every week for 12 weeks

I found this lot to be allot easier apart from again the first 2 lots because with this one there is a high chance of having an allergic reaction so the first 2 times you have this you have to sit on a bed and be monitored.

The side effects for this lot were muscle ache and numbness of hands and feet along with other things.
I found That hot baths and wheat packs were amazing and a electric blanket.
For the numbness in my hands and feet i was lucky to only have this very mild but i kept my hands moving by doing crochet most nights. but i found i was allot more clumsier with my hands burning and cutting them allot more than usual.
one of the weird things that happened to me was that i had this mechanical thing going on i had no warning if i was going to throw up it just happened if my feet were going to go numb i would stand up and nearly fall over quite funny but weird. thankfully his didn't happen very often.
Also the taste thing the thick coating went away but there was a taste in your mouth that was always there some foods set it off more than others but it was always there no mater what you ate or drank eventually it all tasted the same.  Everything taste wise was really dull and some of my favorite foods like hummus i couldn't eat because it just tasted wrong.
I found that some times i wanted to stay in bed other days i wanted to get out and do stuff.
My hair started to slowly grow back throughout this chemo but i decided to shave it off again as it was growing back patchy in the hope that it would grow back more even.


so after 6 months of treatment one to go 16 lots of chemo it is quiet weird how fast it becomes apart of your routine. especially the once a week one. It has gone really fast but it has gone really slow.
I have had some great times and some shit times. but you just gotta pick yourself up and keep going. get through it any way you can. try to smile but if you feel like crying or yelling do that as well. turn the music on loud and dance around the house.
But all in all you can listen to what other people went through but everyone is different and everyone reacts differently. my advice to you is do what is right for you take it day by day and don't be afraid to say No. put yourself first and if you don't feel like doing anything don't.
I chose to not have a lot of my family around me as much as i love them it would of been to much to have them here worrying.
take any help that anyone is willing to offer. Do what is right for you and if it doesn't work change it. stay in your pj's all day and watch good movies.
Do things that make you laugh.
don't be afraid to ring your nurse for any questions.
I found the steroids to be the hardest part the fluid build up some mornings i would wake up and my face would be so puffy and tight but over the day it would slowly go down a bit. Along with the 3 nights where i was lucky to get 3-4 hours sleep due to having to have the steroids. i found its amazing what you can get done in 24hours when you only sleep a few. but also on the other hand because i was awake for hours and at home and then at home sometimes during the day i found i felt quite stuck In a rut and needed to get out of the house even if just for a drive just to do something different.
Ema :)

surgery

 I got some multi vitamins from the local health shop body wise in nelson Omnium which are really good multi  before my surgery and before i started chemo to build up my immune system. these worked really well.

tips that may help
Ask your surgeon what and how big your scar will be, for me i didn't ask and i got quite a shock when i saw my scar for the first time.
Having someone staying with you at the hospital. After your surgery
I learnt really fast after my op that it was a good idea to sit in the shower because i would over heat and nearly pass out.
I also learned that with having drains in that its not a good idea to get them hooked on anything.
I  learned that when you lie down or sit up the fluid by your scar moves around it is not a bad thing unless it get really tight.
Also massaging your scar helps to soften it and this is good for if you were going to have reconstruction. not straight away but once it is heeled.
Make sure you have a spare drain at your house and have someone show you how to change it so you don't have to go up to A & E to get it changed if it stops working.
( although a trip to  A & E can be a bit exciting)
Treat it as a holiday it as a holiday recover slowly it is OK to ask and accept help.
make sure you do your exercises from the physio.
Use your district nurse who comes to your house and don't be afraid to ask questions.
Also since surgery i always have disinfectant with me at all times one in my bag one in my car just to make sure if i cut my hand or arm that i had surgery on i was always going to be safe from infection.
It has been nearly 7 months since my surgery i know that if i have a really busy day or if i lift to much i still get a bit sore. using a hot water bottle or wheat bag  or having a soak in the bath can help with the aces and pains.

When getting a fitting for your permanent prosthesis(or chicken fillet)
take a few tops some tight some lose so you can try them on to see how they look
take someone with you if you can.
try to go for the lighter one so that you have the same weight on both sides you don't want to be straining.
When getting used to wearing your new bra and chicken fillet i wore mine for a few hours at at time to start with and built it up to where i could where it for a full day.
sometimes it got a bit irritated wearing a singlet or Cammie under your bra helped a lot with this.

Ema :)

find something that makes you laugh

even if it doesnt work each time  make a dork of yourself.

One to go!

Well, one more to go, we both should be ecstatic, inside I'm sure we are, it is very hard to explain but right now one more could be 10 more, its still exhausting, and the thought of pushing yourself to head back up next week and the tiredness and just been fed up with everything is just abit too real. Em came home and after a drink headed to the couch and slept. She hasn't done that for awhile. The bland food taste, feeling like changing or doing something energetic is just out of the question, I guess its enough now, shes had enough of been a cancer person.  The toll that this crap disease has taken on my sweet girl is so so much, which brings me to my next worry, and that is when she heads up north.  They have no idea as they haven't been down here ( and I know that they would of been here if Em and I said we want you here, I wasn't been mean} with her, about the day to day struggle, the effects of the treatment both on body and soul, and I know that some will try to understand and others will tell her to get over it and move on, there will be many months if not years of getting over it, and each amazing cancer survivor will do it in their own time and way and what is best for them without been told otherwise. So to all you people out there that think by saying  your over your treatment move on get on with your life and get over it. Don't ! These wonderful people will do that ,just be there with an encouragement give love, hugs, and remind them of how fantastic they are.
Dee xx

A better week.

My carrot and raisin and cream cheese cup cakes for craft night tonight (we are having  craft night tonight instead of Tuesday as Tommy had to get ready for his outdoor ed camp up in the snow last night)

they look really cool but i like mum am having problems with the cream cheese icing it keeps melting?

This week has been a better week. I won a family pass to the play at the Theater Royal to see the Twits (Yay) The ECO Fest is this weekend and after tomorrow i only have one more chemo to go oh yea!!! about time!!!!! 

But one thing i did have to do was have a few blood tests done on  Monday and waited to here results on Tuesday and didn't here anything so i rang only to be told that everything was fine. But then i get a call on Wednesday by the nurse telling me that they want me to have another blood test next week due to the fact that my potassium levels are .2 higher and i said well what does that mean and she wouldn't really tell me saying it could be lots of different things so she didn't want to say anything until i had my next blood test but to stay away from banana's and that was that .  So i get of the phone going what the??????????

i sat there for a while and then thought ill just ring the oncology nurses and ask someone cause me and mum were like what does this mean?

after speaking to a nurse she said you need potassium to make sure the cells are pumping blah blah( i stopped listening after that) but it could mean i am not drinking enough water to flush out the potassium i am getting or I'm eating something with to much in so just drink lots of water and it's only a wee bit high so should be OK . So i relaxed a bit after that and looked up on the Internet what i should stay away from well practically everything i eat has potassium in it. So i will stop the things that are high in potassium for the week drink lots of water and go from there. On one hand i am really happy that my Doctor is being thorougher which is great on the other hand she could of told the nurse to give me a bit more information before ringing me? So i wouldn't panic. I know having high potassium is not a good thing but it was only up by .2 so hmmmm.

The cancer society put on a seminar today with Bogda Koczwara who spoke on care after cancer. Was very interesting, about how when you are having treatment for cancer you have appointments you have doctors you can contact your told where to go what to see basically what to do. Then when you finish treatment chemo or whatever your told OK you've done great you'll have your next appointment in 3 months and you don't really get passed on to any follow up care. You could go to your GP but most of the time they don't have the information you need to help you with any questions about where to next.
I guess i am really lucky that i have a great support system and my GP has been kept up to date with everything so i can go to here and we have a great Cancer society in Nelson. But wake up N.Z follow up care is needed.
Ema :)

http://www.stuff.co.nz/nelson-mail/news/5408088/Quality-of-life-major-issue#share

Time to chill

http://www.harlequin.co.nz/menu/Restaurants/Yaza.asp

This has become our favourite coffee cafe to go to, not to be mistaken for our favourite takeaway and coffee beans place sublime. Often while in town we will just chill out on the couches, chat or just watch the world go by. The food is wonderful and there cheese scones are amazing , although on this day they were really disappointing, maybe different cook. So if you haven't been there pop on in , its right in town in the car park where they hold the weekend markets.

Love Dee xx

family day out

We went out for a family day out today headed to Mot to the market then drove around a bit and ended up having lunch by this cute settlers cottage in Upper Moutere. Mums would quite like to live in the wee cottage. As we were having lunch the temperature started to drop as this cold snap settles in. So we packed up and did some driving around and saw some really cool cloud formations tried to get some pictures but the photos didn't come out as good as wanted but ill still put some up. I'm sitting at home now hoping that we get a good storm soon thunder and lightning yay. Was nice to get out of Nelson today when you get stuck in a rut you forget how good it is just to go for a drive and just look out the window. New Zealand is beautiful.
For around 3months i have been hanging out for a rhubarb sponge came home yesterday and mum found some rhubarb so were having rhubarb sponge and custard for dessert yummy!!!!!!!!

then after a day out my mum comes home and baked 2 different biscuits and the rhubarb sponge and dinner man my mums a star

Ema :)

my nana my insperation

                                                  My Nana Posa And My Sister Danielle

Just look at my Nana's face the beautiful smile says it all this is my Nana down to a t she's always smiling.
My Nana got breast cancer a month before i was diagnosed.
when she rang to tell me i was so upset and worried this was the first time someone in my family that i knew had breast cancer. My Nana chose not to have chemo as it wasn't really going to do much for her and the side effects were not worth it.
My Nana has smiled the whole way through apart from a few bad days but you get that at any time.
The hardest thing for me to do was to ring her and tell her when i had been diagnosed ex specially because around that time my poppa got diagnosed with bowl cancer (we had our op around the same time) I think we all burst into tears and they said that hearing that i had cancer was worse for them.
It has been hard because Nana and poppa live in Dargaville and i live in Nelson and so we talk and txt on the phone a lot. but i haven't seen them for over a year i cant wait till i get to go up and see them in around 5 weeks. this I'm sure will also be very tough and emotional. But throughout this my Nana keeps smiling  and laughing and has the great Posa positivity. love you Nana xxx
Ema :)

nelson woman who inspire me.

                                                                          
                                                                        Mel

Sarah

The lovely Lady's Mel and Sarah who i had the pleasure to meet at a not so nice place chemo. but meeting these two strong Lady's who are always smiling has made our chemo journey fun

(well as fun as chemo could be)

both of these 2 special people are amazing and beautiful, kind and caring and i am so blessed and lucky to of been able to meet them and spend time with them.

Even when shit was bad or if they get bad news they still put a smile on there faces and get on with it. xx

 

My Mum (Dee)

well what do i say this woman has given up her job her social life to be by my side for coming up to 8 months now and i am not an easy person to be around at the best of times but I'm twice as bad when on on all the drugs they pump through me. My mum gave up a job she loved so she could be with me 24/7 throughout this journey she doesnt moan (much) but on top of all that she runs a house cooks all meals has ea teenage son and an 11yr old son at home a 18 yr old son who doesn't live at home but she is still his taxi and still washes his clothes. she is a councilor, a cook, a taxi, a cleaner, a fixer, a mum, a wife, a friend, sometimes she does to much and we don't tell her how amazing she is enough and how we would all fall apart if she wasn't around.

she always puts her family first and would do anything for anyone of us.

I have said it many times before mum you are amazing and stunning and i love you so much. thank you for being you. thank you for being non judgemental. thank you for your support.  xx

Talia

I wish there was something i could call you we have tried many times to come up with some thing my brothers baby's mother just doesn't seem right for someone who i consider to be my family.

so i will call you Talia my family.

You have blown us all away with how amazing you are with Amieka how great and smart she is. It shows the amount of time you spend with her. and the way her face lights up when she sees you.

You are amazing and kind and caring. and such an amazing mum.

we are so proud of you and so proud that you are apart of our family.

and we love you both big time xx

Bee

well Bee what can i say the more time i spend with you the more i like you. your attitude to life after all that you have been through is something i would love to have you are so clever and talented. and i love that you never do anything you don't want to do. You always make me laugh and i learn something from you every time i see you.

looking forward to spending more time with you.

you are one of kind xx

Ema :)