can anyone help?

[Stace]

Hi there I have just finished a year of chemotherapy, radiotherapy, a major bowel operation to remove a tumour & lymph nodes, had a stoma for nine months, went through another six months of chemo then an operation to reverse the stoma. I am yet to have my first checkup which will be a CT Scan & colonoscopy. What i would like to know is does this ever get any easier i am feeling very anxious about the first lot of scans, how will i cope if they do find something, even though i am usually very positive and i have a fairly good feeling there is nothing there, is it more scary for the first lot of tests or each time you go through this. Also i feel like i dont know alot about my diagnosis, is this normal. Im not sure if i am not asking enough questions, it all happened very quickly, im from the country and went to have a colonoscopy on a thursday was told they found a tumour that day, saw the colorectal surgeon the next day and it all went from there, six weeks later i was starting chemotherapy. I have had a few people ask me what type of tumour it was, whats my CEA level etc? These sort of things i have no idea about, do other oncologists tell their patients or do you have to ask? Also when are you in remission? I get that asked alot and i dont know if i am currently in remission or do i have to wait the five years? Just wouild like to hear your thoughts and would also like to hear from other people who have been through the same thing.

[harker]

Hi Stace I have decided that what the doctors say to me does not make any difference. Three years ago when I was told I was in remission it did not make any difference to my body as my body already knew that. So what the doctor said was just words. I had earlier decided that I was living with cancer and that did not change because I entered a stage called remission. Not a jot. I am still living with cancer, in remission or not. Some months ago I was told that my myeloma condition has returned. That is what the doctor said to me. I thought 'So what? I am still living with cancer'. The doctor's words were not a big deal for me at all. Any implications re new treatment, appointments, hospital visits, etc are just the practical day to day things that follow on. I still think 'so what?'. My identity is not about the medical condition. It is something way beyond that...just like I hope it is for the people who do not have cancer and have no idea that we are blogging away like this. Hope this helps. H

[pimbok]

Hi Stace, I found it handy to jot down questions as I think about them ready for my oncologist. If I sit down and try to think of all the questions in one go, I just can't think of them, so I have a list which I keep in my bag and can jot down questions as they pop into my head. Ask as many questions as you want. My only problem the first time I saw my oncologist was that I was so nervous I forgot to get my list out. Good luck with it all and let us know how you get on. Kim

[Stace]

Thanks everyone! Kim i have taken your fantastic advice and written down all the questions, very good idea as i will get in there and freak out and completely forget about what i wanted to know! I will be sure to let you know how i get on. Thanks once again, its lovely to beable to chat to others who have been or are going through the same thing. Take care Stace

[CJF]

Hi Stace, I too found it hard to remember what I wanted to know and ask. My husband came with me to most appointments for the first year or so which helped as he remembered much more than I did. When he wasn't there, I wrote my list but in the end I asked my lovely doctor," What should I be asking? What do I need to know? ". He then chatted to me to find out what I wanted to know and more importantly, what I didn't want to talk about right then. Maybe I was lucky, but I felt that I had all of the information I needed, wanted and could handle. I am coming up to 4 1/2 years in since my last cancer was removed. 4 years since treatment ceased. I am still anxious before every visit - never really aware of just how anxious until it's over and the weight is lifted. For some of us I'm sure that feeling doesn't ever go away completely but over time, it is diminishing for me. I hope it does for you too.

[etacarinae]

hey Stace I had stage 3 rectal cancer (how embarrassing!) surgery 1 year ago and a stoma. Then chemo and radio treatments that finished in Feb this year. Stoma reversed in Jan this year. So I think my story might be similiar to yours. I know what you mean about everything happening so fast - wow what a ride. How are you coping these days? Cheers Eta

[survivormom]

Hello there. This is Norway calling 🙂 Well I didnt have the same cancer, but I understand your question, and I dont think it is a correct answer about how much you have to ask and how much doctors tell. I think that is various there as here. Some tell alot, and other dont tell anything. Some speak over the patients head, and some speak a language we dont understand. I did a thing I regret today. I recearched everything I could find about my lymphoma on the internet, so I could ask questions I actually didnt like to know the answer on. Sometimes my doctor who was a spesialist for lymphoma said to me, "you know more than me sometimes". I had no Idea, that some websites I was visiting was meant for oncologist, and not for us, so I got to know how little chanse I had to survive. I got to know that the illness I had was known to get back, so instead of enjoying the last 8 years, I have in fear been waiting for the cancer to come back. They sstill say I am in remission, but it is 8 years since I was ill, so I like to know that I am a survivor. But prommise me. Dont ask them for answers you dont think you dont want to know. I have alot of sideeffects, and they have affected my life, but I am sure that I would have had a better last 8 years If I didnt knew what I knew. I have been so afraid every check up. Every time I have been sure about that this is the time they gonna tell me that it has come back. My doctor told me that I shouldnt worry before it is a reason for it...well that is easier said than done... I am a person who worries alot. I didnt think I got to see my girls grow up. They was below 5 and 11 when I got ill, and now they are 13 and 19 🙂 Still I am some in the hospital, because of sideeffects from treatment. I had Highdose chemo with autologus stemcell support, and that means I was myn own donor. They didnt think it would work, but they didnt have another option, because with the treatment they used to give, they knew for sure that it would come back...just a question about time...so they tried to trick the cancercells by giving it more intensive. They didnt think it would be such a good Idea, but here I am. They call it remission, so you see that is something who wil be different for each illness. Because as soon as you are showing sign of beeing better, you are in remission. I am a survivor. Wish you the very best on your check ups. And remember, it is not more normal to know alot than little or nothing. Evrything is normal. Hugs from Norway 🙂 ps! because of High grade of Fatigue syndrome from treatment, I have problems with consentrateing, so hope you forgive me3 for writing so long message.