June 2011
Well Kirsten my daughter has decided to have surgery but she still has to let her doctors know this. ...one step closer this will hopefully give her some life to live outside of her bedroom. Big opp though.
... View more
May 2011
i dont know she hasnt said much she wants my aunts oppinion so hopefullly can see her sugeon tomorrow as my aunt wants some questions answered yeah they just upped hers to 50mg patches too. My daughters legs look like they are going to collapse from underneath her they shake and she had to climb up a bunck bed few weeks ago and her legs just wouldnt help her up just shaking. How is your appetite? she only eats 1 meal a day at night and is still loosing weight 52kgs now. Do you have any muccas discharge? She had a test to check for infection but she just wouldnt make the time to get it done. How do you spend your days if your not working, im going to apply for carers payment to stay home more to help her and hope to get more food into her, i think it the right thing to do its just to hard to do everything and she is the one suffering but not having me at my best.
Rachael
... View more
May 2011
Ive talked to my daughter about our conversation and she was wondering if you suffer from any bladder problems as this is a new thing she is experiencing she too is on 3 day patches duragesic i think its called with oxycontin as when needed this has all just been increased as it was no longer helping and they wanted to admit her Monday to get it back in control She has copped realy well with the colostomy i think beause it all happened so fast diagnosed on 17 jan 11 colostomy on the 1 feb 11 and then finding it had spread on that day for her its like the cancer is more to worry about then the bag.talk soon
... View more
May 2011
Im sorry you have to wait so long for everything it is so hard the waiting every step is an emotional experience, which is so exhausting. Are you in any pain?
She was so worried this morning about what they would say she didnt want to know anymore bad news.
We were told she needs to build her strength as she has lost so much weight and her head needs to be in the right place as its a big job and they will remove everything, she already has the colosomy so that bits done. She just has to decide if she wants it she said today when the surgen was asking her if she wants to go ahead with it, she says "i dont know im still a kid, mum should i get it" this must be so overwhelming for her shes still a teenager.
Let me know how you go and good luck
... View more
May 2011
Hi and thanks for all your thoughts, Things had settled down for a few weeks but short lived of cause. My daughter just went through retesting in the last 2 weeks and that itself was hard, so the results today, chemo and radiation didnt help to reduce her cancer but it hasnt spread anywhere else either it just wants to hang around and make life hard for her. They think major surgery will help with the quality of her life but at this point she doesnt want to do it. Her back pain has been so bad that they wanted to admit her to get that under control but she blaintently said NO!!! its so hard sometimes i feel so down today im emotionally exhausted. Does anyone feel like nobody REALLY understands. I cant seem to articulate what im feeling just heavy, lonely,helpless and lost.
Rachael
... View more
April 2011
I understand how hard this is for you just to hear the words cancer in relaion to your child you know i think the waiting is the hardest because you are just sitting feeling like you are doing nothing at least when there is treatment, surgery it feels like you are fighting we have just done 6 weeks chemo and radiation and now we have the wait of 3-4 weeks before more tests and find out if it helped at all. Im sure it must be extremly difficult for your son as i understand that on a young childs body where this cancer is its not easy to be showing as i know my own daughters discomfort.
I hope for the best for your son.
Rachael
... View more
April 2011
I have an 18 year old with rectal cancer they say stage 4 pallitive care, we found out in january 2011 after 9 months of her complaining of stomach pains not going to the toilet tests saying your constipated, drink this and that take this enima... off to the emergency 3 enimas there and litres of some concoxsion no tests... this will move it, but nope still nothing so we decide to leave with no hope and our bag of sabosatries in hand and the hope that our colonosopy wont be to much longer ( 3 months wait) finally our appointment the doctor had to use a pediactric scope as he found a growth (tumor). We were called into he's office the next day as the biopsy came back cancer, advanced. They say shes had it 2-3 years extemely rare they say 1 in a million this is a 50 plus disease suppose to be some comfort in that, so within a week they do a colostomy, great while they are in doing this procedure they find it has spread spots around her stomach, bowel its taken up her perenium and now we have palitive care and no more talk of surgery as its spread a time frame on her life. Watching my outgoing daughter turn into a young woman who has no energy and pushes her friends away and has become very relient on me like a 3 year old emotionally, she cant bring herself to go anywhere im still working but the guilt of needing to work and needing to be at home with her plays on me what if the doctors are right and she doesnt survive this, have i done the right things. I have 3 other younger kids that struggle to get any time with me as my eldest (sick child) wants and needs so much of my time she lays in her bed all day and night as its most comfy for her so thats where she wants me too next to her but when the others come in she has no tolerance to them when all they want is there mum aswel, I'M TORN. She is so emotional she calls me at work sobbing not knowing why she is so upset but knows she just wants me, she doesnt eat, she wont take any medication other then her pain relief she tells me she wants to give up "i only want her around because shes my friend and ill have no one else to talk to" she is right in the fact she is my best friend but she is also my daughter and i cant even imagine life without her....
... View more
April 2011
Hi there my daughter 18, has stage 4 rectal cancer and i was just relating to your attempt at herbal remedies, we too tried this and have experiened the weight loss due to the lack of variety and such bland foods its not easy to find dairy, wheat, gluten, sugarless, fatless, saltless foods, coming from a girl who loved her food sometimes found comfort in food, im lucky to even get 1 meal into her. What do you do when doctors seem to have no hope and herbal makes you physically sick (she started vomitting when she took her herbals) and you just stop eating and bed is your best friend. I didint know about this TYPHONIUM FLAGELLIFORME but after loooking it up if thats what your mum wants to try give it ago you have nothing to loose.
Rachael
... View more
