Hi guys,
I haven’t posted for aggees but have been on blogger if you read that.
but since i finished chemo and radiation i have been having some problems and am beginning to have some more tests to find out whats going on. My troubles are:
chest hurts/feels like its going to explode if i panic or get a fright
get really breathless really easily-can’t run for more than a few mins now, whereas before i could run for about 20.
my skin is really sore, my body feels burnt, particurly around my arms and sides. This is the one that im most bothered about coz it hurts all the time.
Just wondering if anyone has any clues? Im guessing treatment has messed with my heart and lungs but just wondering if anyones experienced anything similar?
Thanks and wishing you all well and happy :-)
My wee rant.
I know your advice is well meaning but please don’t tell me what to do.
I know you’re trying to be helpful, but it’s not. It makes me feel like you don’t trust me, like you think I don’t know myself, like I can’t judge for myself or make my own decisions.
I’m not a child and I’ve had plenty of experience In making mistakes and doing too much. But I know me. I know what is important to me and I know what’s going to help me through.
Yes I do need to look after myself and if you know me well you will know I am trying. Yes I do need to take time for me and my family, if you know me well you will know I am. I am not you, I am me. and what may be good for you is not the same for me.
That’s my wee rant and there are plenty of people I want, need and like advice from. Hopefully you know you are.
Thank you for caring.
Normality is important for my recovery. Graduating is important for my recovery. Exercise and work are important for my recovery. And my fight against this cancer.
Saturday mornings in bed watching tv on demand, and my early finishing times for placement, the times I just sit on the couch with Mathew or the times me and Rhi go shopping give me rest.
So there’s this amazing website called Gives me Hope and i just wanted to write some things that give me hope.
Hariata- you have no idea xx Theres actually no words, and i think you probably think you don’t do that much but you do without you knowing.
Hannah and your beauty and vintage-ness and texts and prayers and understanding and i am glad i have known you since forever. You are now officially one of my longest friendships and i love how its grown.
And the rest of your family who i feel are going through something way bigger but still manage to send me a lovely card and and messages and prayers.
The Fishers-thank you for your encouragement and prayers and texts and hugs.
The Dodges- you are amazing and always have been.I love your texts Esther and just how amazing and strong you are. Ms Jenna, you also amaze me. I know this hard for you and that’s ok. I don’t think it should be easy. I guess there’s no point if it’s easy, because there has to be a point to it. You might not feel strong and its ok to not talk about it all the time with me. I know you love me and i love you millions. I have your hearts by my bed and they make me smile everytime i see them.
Jayden and Aimee you guys are also amazing and i want to come visit your cat. :-)
Ema- you are just awesome and so encouraging and supportive and i can’t wait to eat some of your dinners.
My wonderful amazing husband-you are understanding and supportive and do so much for me. I know this is just as hard for you but you are so strong and inspirational. You help me get through everything and i am so glad i have you by my side.
Jo and Daryl and the rest of the Voisin and Reilly and Crow family. Thank you so much for your support and encouragement. It means so much like a million times so much.
The texts and Facey messages and cards and gifts and flowers and cakes and brownies give me hope. They make me smile and feel remembered and supported.
Lisa and Sabrina- you guys were amazingly supportive and encouraging.Thank you for teaching me so much and your belief that i could still finish placement.
PS Lisa your cupcakes were a-mazing.
So many of the youth i work with give me hope. Life is not easy but each time you smile or laugh and reach out for help and talk about how you feel makes me so proud of you. This gives me hope.
I felt not very happy last week and three of my wonderful youth pulled me aside at just the perfect time to show me a song they had learnt. This give me hope and still makes me smile now.
Bev-you give me hope
Tonto-you can’t cut me hair, but you give me hope
Blair and Emily and Carla and Aaron and Jess and Tafua and a whole bunch of other people.
I know i’m missing people out, there are so many people that support me and encourage me and pray for me. You give me hope.
I had my third chemo on Friday. I was so stressed all week about getting a picc line (which stays in my arm for the duration of my chemo). I don’t like getting needles all the time and guess i do get scared about the potential pain. I didn’t know how it would affect me and if i could exercise (which was probably my main concern) and if i would hurt, what i would feel and how big it was going to be.
No health professional told me anything before i went to get it. And i sat there saying lets go i don’t want it. Lucky i had a nice nurse with an awesome South African accent.
Melly and Jess were very helpful and did reassure me during the week.
The local anaesthetic really freaking hurt (freaking is actually an understatement. The picc line goes in my vein from my upper arm all the way to my heart. I felt it go up under my arm in my vein which felt so gross.
Mathew watched, but i didn’t. He said they put a metal stick in my vein and then a straw type thing and then the picc line. It was over very quickly. And then i saw a very cool xray of my chest and heart and the picc line.
Coz i had been so stressed about the picc line when i went to chemo i was so relieved,it was a totally different experience. I felt so relieved that i wasn’t stressed about the chemo.
Hopefully next time i won’t be stressed wither coz it won’t involve any needles.
I talked to another chemo patient, which i haven’t done before and lovely Maddie and Lilly came up. And Jo and Daryl too. Your visits make me happy. You are good family.
I didn’t feel so tired straight away and i didn’t get a bad stomach ache either.
Hata’s visit made me night and your cake is flipping delicious!
Hehe Hannie and C, you guys also made my night. PS hannie, you looked beautiful.
KylieandRobbie,thank you so much for your gift,the flowers are beautiful.
I’m really excited for next weekend and going to beautiful Tekapo with Hamish, Luke and Lis. I miss you guys!
And then in three weeks i’m up to Aucks to stay with Hata.
I finished placement. You guys taught meso much and supported and encouraged me. Thank you so much.
My oncologist is happy with my progress and said the tumour in my neck has gotten smaller. Even though i could give him a whole page of symptoms i have experienced, they are all manageable and he said that was what was to be expected and i was managing well.
And now i really need to do the washing.
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Hey Carissa, I’ve had some of the side effects but you should talk to your doctors about them to make sure they aren’t serious. For the me, the tight lungs came from a mixture of radiation damage and gvhd (which comes from transplant). The running could be a mixture of the lungs and the fact that the treatments destroy one’s level of fitness. You can fix the breathlessness by eating blueberries (they oxidize your blood; and doing stationary cycling). It’s been over a year for me, and I can barely walk over two miles on a good day. As for the burned body feeling, it’s either your body recovering and replacing all those dead burned cells OR if there are brown streaks, stretch marks (I’ve got them, your skin gets tight and can’t stretch like it used to). Hope this helps, that’s what I get from my docs. Hope those are the only possibilities and you have nothing going on. God bless! :O)