https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/651#M165 Hi Butterfly, yes my life is good now, but remember I am 6 years this Australia day since my diagnosis and you are barely 2 years!!! I had the common childhood form of luekaemia called Acute Lymphoblastic Luekaemia (ALL). this type of luek is much rarer in kids over the age of 16. it also subtypes in various complicated and understucied forms. with my sub type, there were only 10 other recorded cases in the world. i have some stuff to hare with you as your posting brings back memories for me... memories of the tough times i had after my treatment finished.... when my emotions caught up with me. its a wierd phase of cancer.... that part of finishing my treatment and fitting back into society BUT i was a different person with new values and a new way of looking at life - ie life is precious! basically during this time i drove my family and friends crazy, as i often felt angry, lonlely, misunderstood, nervous and depressed. i searched for a some sort of counselling health professional to talk to about my emotions, but could not find one on regional NSW who had a background and knowledge of cancer issues. this difficult time seemed to drag on and on and i was so worried that my bad state of mind would bring back my cancer. But i got through it and i am now amazingly happy to the point that my family and i can look back at this time and laugh at how nuts I was. I think it was my greiving period of loosing the life i had and having the confidence to grow  into my new life ahead. it must be hard for you also being a mum and going through the recovery phase of cancer. enough sleep is so very important... especially for us patients who have had chemo/radio/surgery etc. this is when your body heals and your fragment mind gets put back together to face another day in a more positive mind set. try to get enough sleep, whether that is taking nana naps during the day or speaking to your hubby to support you with the weekends to have a sleep in until your body is ready to awaken you, not the kids etc. if these are not an option, mini meditiation sessions are an awesome way to clear the mind and re-energise. i used mediation alot, and still do. have you dabbled in it? i also had 2 male friends with ALL at the RMH hospital i was being treated at. i loved their company. they were my mentors. one was 18 and admitted 3 days before me and the other 40+ and was 3 months ahead of me in treatment. our treatment protocol was 54 weeks of intensive chemo administerd in hospital. we would get o go home for a day here and their but spent alot of time fighting various infections in varoius wards in hosptial. unfortunatley both men died about 9 months into my treatment and i was alone and very scared. but i had my amazing family and a female haematologist who was so compasionate. at the time that my mates passed away i was also extremeley sick with menengitis caused from the chemo, and was on massive doses of morphine. i was basiaclly in and out of a dreamy conciousness for 4 months. my treatment was stopped and i was sent home 1 and a half years after my initial diagnosis. I remained on morphine for another 9 months. when ever i think about these 2 men i feel so sad. sad that they had to go through such a horrible treatment and did not make it. but it is also these men who give me my strength to find better ways to help the young adult age group - like us.   ...you are so right in saying that its hard to move on, even when your family want to forget about it because yout treatment has finished and you look better- BUT they need to realise that our cancer is going to be a part of us for the rest of our lives, and our family and us - combined must deal with it and not push it aside. they/we need to realise that our emotions - post cancer (not just the physical effects) are also a part of the journey! so keep your head held up high and communicate as much as you can about the way you feel. I found this to be the best way forward for me. i hope this helps best,nikki   Wed, 11 Mar 2009 01:37:37 GMT Nikki_YAC 2009-03-11T01:37:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/616#M130 Hello,I'm new to this forum, my (our) life has been turned upside down over the past four weeks.I have been diagnosed with Bowel Cancer which I did not know I had until four weeks ago.I'm married and have 3 children and one on the way so I'm hoping that I can find some answers here to what is ahead for us.Oldman Wed, 11 Mar 2009 01:02:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/616#M130 Oldman 2009-03-11T01:02:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/617#M131 Hi Oldman,Welcome to the forum. There's some good information available on the Cancer Council website which should give you a broad overview of what to expect.http://www.cancercouncil.com.au/html/patientsfamiliesfriends/typesofcancer/bowelcancer/downloads/und_bowelcancer.pdfThere's also a forum on this website specifically for people with bowel cancer. Hopefully we'll have some people who can share their experiences and give you a better idea of what might be ahead for you.Good luck! Wed, 11 Mar 2009 01:03:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/617#M131 mikey 2009-03-11T01:03:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/618#M132 Thank you for the welcome. I have added some info to my home page I'm not sure how it works for you to have a look at?Oldman Wed, 11 Mar 2009 01:04:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/618#M132 Oldman 2009-03-11T01:04:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/619#M133 Yes indeed, I can have a look. In fact I had a look at your homepage just before I replied to you. Your homepage is shared with everyone who has registered and logged in. Basically I just clicked on your name from one of your posts. You can try the same with me as long as you're logged in. Wed, 11 Mar 2009 01:05:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/619#M133 mikey 2009-03-11T01:05:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/620#M134 Boy do I understand how you feel.  In October I was diagnosed with breast cancer. I am 42 and have three children (20, 18 & 17).  The worst is the lack of control, one minute you have plans the next thing someone is telling you that will be spending a lot of time at a hospital and that your life is taking a new path. I too had just returned to work after a 6 month break and was looking forward to the extra cash and mental stimulation. Now I have chemo and radiation to contemplate.  Funny how your world flips in one word - cancer. I hope both our futures hold - little or no 'side effects', good news and long lives. Wed, 11 Mar 2009 01:06:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/620#M134 cmarti15 2009-03-11T01:06:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/621#M135 Dear cmarti15,Thanks for posting I think that fear has been biggest side effect for me.I know that the treatment itself does not hurt but I still worry about going in there everyday.How are you children coping with this change and the new daily routine that awaits you?I'm starting to see a councilor tomorrow (Monday) for the first time because of my lack of motivation to fight this thing.Best Wishes for the futureoldman (kevin) Wed, 11 Mar 2009 01:07:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/621#M135 Oldman 2009-03-11T01:07:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/622#M136 Hi Kevin, I am 32, married with 2 young sons and was ( and still am ) really concerned about how this would affect them and what would happen if something happened to me, I think these feelings are all natural. After my surgery to remove the cancer the pathology results showed that the tumor was grade 3, larger than expected, was growing through lymph channels and also vascular invasion (growing through veins) I finished my treatment 12 months ago. I also had major surgery with a 2 week stay in hospital. I found that after the surgery I was really keen to get going with the chemo and radiotherapy and felt really positive, but after a week or two I started to feel fed up and at times felt like giving up. I think it is really common to have these feelings, the treatments really take it out of you.  I spoke to the social worker a couple of times which did help me to get some things off my chest which is really important. I think that there are a lot of things that I would not want to discuss with family as it may upset them. I dont know the status of your illness but try to keep up the fight you will come through. Just think every time you have a treatment that it is one more down count them off one by one. There is light at the end of the tunnel, you may feel terrible right now but it is amazing how we tend to recover and heal from these things and become accepting of any side effects and check ups. It does take time and the emotional side is something that stays with me & worst case scenarios sneak into my mind every now and then but I try to push them aside and just think of my family and live each day as it comes. After reading your last post I really felt for you. I hope hearing my story will help somehow. People do survive bad cancers and go on to live happy lives. Best wishes butterfly Wed, 11 Mar 2009 01:08:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/622#M136 2009-03-11T01:08:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/623#M137 Dear Butterfly,what a cool name sure beats my oldman username. Well really I'm not that old I'm only43.On the 18th of September this year I found out that I had a T3 tumor in my bowel, this came totally out of the blue and as you said turned our family life upside down.We were on such a high as the month before we found out that baby number 4 happening (due in late march)I find it hard to get the word cancer out of my head it tends to be there all the time when my mind is idle, I tried to see the social worker today but she was busy.I think that I'm getting better with the treatment I think that the biggest side effect from it all is fear I think I have said that you know that there is no real pain from the radiation and the drugs but each day I dread going in there.Reading your post did help me have a much better day so thank you for taking the time to share with me your story.Best Wishes,Kevin (oldman) Wed, 11 Mar 2009 01:09:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/623#M137 Oldman 2009-03-11T01:09:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/624#M138 Hi Kevin My kids are coping too well. I have always been the disciplinarian, the person who solves problems and helps everyone deal with things, so I think they just assume I will cope and get on with it. This is good I know but occasionally a bit of tlc would be nice. I have 6 months of chemo starting 11 Dec 07 then 6 weeks of radiation along with Herceptin and Tamoxifen, which for a person who doesn't even take panadol, is a bit hard to contemplate.  I think the worst is not being in control and having your life taken over by treatments and appointments. The other thing is all of a sudden everywhere you look there is someone wearing a turban or talking of cancer - its seems there's no escape. Sometimes I wish we hadn't even told our families, as now I have to detail every appointment etc to them all.  Sometimes it would be nice to just forget about it and go back to precancer days. Anyway enough whining.  Chow Chris. Wed, 11 Mar 2009 01:10:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/624#M138 cmarti15 2009-03-11T01:10:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/625#M139 Hi Kevin & Chris, How are you managing Kevin? I know what you mean about the fear thing. I find it ironic that you can have cancer, feel well and not know about it, then you go through all the treatments which actually make you sick! and all of a sudden you feel like you have cancer. It absolutely affects the whole family, older family members think about their own mortality and of course the fears they have for you, but I think kids can be the resilient ones, they bounce back really easily. It is quite a burden for them to have to live with though when they see their parent who looks otherwise pretty healthy all of a sudden feel ill and lose their hair. I used to say to my eldest son that the treatments have to make me sick so I can get better, he didnt really understand that but seemed to be happier with some explanation. Im sorry to hear about your diagnosis Chris. The treatments these days are coming along in leaps and bounds so the one thing we can all be sure of is receiving the best care. My mother is a breast cancer survivor and just reached the 10 year mark, said something really simple to me which has stuck in my head. "Dont forget that what you are thinking about you are becoming"   All the best Butterfly   Wed, 11 Mar 2009 01:11:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/625#M139 2009-03-11T01:11:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/626#M140 Hi all, I'm a new carer..... brain tumour.... bit stressful, but hey, finding this site was great, now we need more people to join in, I'm telling everyone at the hospital to have a look... Wed, 11 Mar 2009 01:12:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/626#M140 Annie 2009-03-11T01:12:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/627#M141 Hi Butterfly  Your mum is very smart, we are what we think and do.  Survivor 10 years on is very encouraging. Kevin You have a new baby coming - you have to be there to make this baby and your other kids into brilliant people - no-one else can do that except for their dad - that has got to be the best motivation to fight the C word.  Chow 4 Now Chris   Wed, 11 Mar 2009 01:13:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/627#M141 cmarti15 2009-03-11T01:13:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/628#M142 Hey Chris,Yer a new baby on the way, Donna is now at 22weeks we had our scan on Thursday (which is very late) and I did not want to know the sex but i saw....that should give you a clue???The new diet I'm on seems to be working which is good.Have a nice week end.Kevin Wed, 11 Mar 2009 01:14:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/628#M142 Oldman 2009-03-11T01:14:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/629#M143 Hello Annie,I'm fairly new here too but have found this forum to be very helpful to my state of mind.I hope you find it the same.Kevin Wed, 11 Mar 2009 01:15:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/629#M143 Oldman 2009-03-11T01:15:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/630#M144 Hi Kevin, I just think that if I get on here at times, it might just help my sanity!!! Wed, 11 Mar 2009 01:16:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/630#M144 Annie 2009-03-11T01:16:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/631#M145 Hi All, Kevin you sound much more positive today which is great, congratulations on bubs, that first scan is always pretty exciting. How are you finding the chemo? I agree with Chris about staying positive for your kids try and keep your mind on the end result, which is you being well. I know its easier said than done! people often say things to me like. just dont think about it, go for a walk or something, I just smile and say,Oh thanks what a great idea Chris my mum has had a few false alarms over the past 10 years but she just keeps on top of things, I think now that she has reached the 10 year mark she only needs to have mamagrams every 2years now which she is very happy about.  She did have surgery, radiotherapy and was taking tamoxifan, which I think they were just trialing back then. I think she took the tamoxifan for 5 years. Did you say you had kids Chris? Are they coping okay with the news. I have to say enjoy the special treatment while it lasts, soon they will be back to their normal cheeky selves, (mine were anyway)..  Is anyone having treatments at RNS in Sydney? & hello Annie, Im sorry to hear about your husband. I am not a carer but I can understand it would be extremely difficult. I think it is important to try and look after yourself as much as possible, sleep when you can and lots of fresh air is always good. I am suffering a bit of lymphoedema today in my left ankle which is a bit annoying. I had all of my pelvic L-nodes removed I think about 50 in total so the swelling in my legs is just a side effect from that I think. a bit annoying though. Healing thoughts are going everyones way. butterfly Wed, 11 Mar 2009 01:17:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/631#M145 2009-03-11T01:17:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/632#M146 I just realised my posts are always really long.. sorry my husband always says Im a have a chat! Wed, 11 Mar 2009 01:18:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/632#M146 2009-03-11T01:18:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/633#M147 hope you feeling better butterfly.  Thanks for the words of encouragement..... it does get hard, but hey gotta hang in there eh!! Wed, 11 Mar 2009 01:19:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/633#M147 Annie 2009-03-11T01:19:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/634#M148 Hi everyone, this is my first time having a look on this site and just thought I'd give my support. Don't worry about the posts being too long - they can be as long as you like!! all the best Wed, 11 Mar 2009 01:20:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/634#M148 2009-03-11T01:20:37Z https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/635#M149 Hi Shayne, welcome aboard Wed, 11 Mar 2009 01:20:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/I-ve-just-been-diagnosed/New-Here/m-p/635#M149 mikey 2009-03-11T01:20:37Z