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.
... View more
I am so sorry to read about your story. I just want you to know that I wish you the very best during everything you have in front of you. And dont keep any emotions inside, let them come out. It can be to much to carry sometimes. I also have to beautiful girls. they was below 5 and 11 when I got ill, and now they are 13 and 19, and I had an agressive Lymphoma and not so good prognoses, but here I am 8 years later, and hope that will give you faith and hope to come through what you are headed against. You gonna fight this !! I gonna pray for you and your family. Hugs from another mom from Norway(Please tell me if there is something you didnt understand, because my english isnt the best, but I try:) Hugs from me to you 🙂
... View more
Hello there. First I will say that I am Norwegian, so I am sorry if my Norwegian is not perfect, and please ask if it is something you dont understand.When I read your words, the first i felt was that it was very familiar. My treatment in 2003 was also like hell, even though I managed it well mentally during treatment, I felt completly flat some months after treatment. I really felt more ill, than when I was diagnosed. But a normal condition is fatigue, there is acute and chronic fatigue syndrome,so the first come and dont stay so long, and chronic it is in words. it is for 6 months or longer and in the fatigue syndrome it is not only the tiredness. You can feel scared, lonely, and have many other symphtoms. Search it up and rad about it if you have not heard about it. Sometimes Fatigue is the first sign of the cancer itself, but, it can come during treatment or just short time after. But they have also seen Fatigue as a sideeffect on longterm-survivors too. People who survived many years, and then started to get "mystic" symphtoms long time after. I will suggest that you ask your doctor about Fatigue. One of the reason people get scared and lonely is that you had all the doctors and nurses around you when you went through treatment, and now you have to trust that everything is ok. I know I felt sometimes...What if they have missed something, and developed an eating disorder because of problems with my intestines. I became a Swing door patient, who was more in the hospital, than home with my family. Actually I was more in the hospital after treatment, then during treatment. But even though I missed my family It felt so safe to know that I was a plase were they could help me if something happend. I dont mean that your and my story is the same. For among 100 persons with cancer, it is 100 different stories, and all of them are uniq stories, and will let you know that it is normal to get reactions after treatment, even though it went so fine during the chemo-hell. People expect you to be further into the rehab than you are, and maybe you too also wished you were further. But allow yourself to hurry SLOWLY, if you understand what I mean. It is now 8 years sinse I got ill and have been in remission since, and I never thought I would get were I am today, but this year I started on a education for cancer care and palliative care. I never thought I could reach this far.NEVER. It is a challenge, but I gonna try. I Want it so badly. But for me it took 8 years to get so far. I still have alot of fatigue and other sideeffects. But I have learned to live with them, but the sideeffects is not me...just something I have to carry with me....and then it is important to carry it in the right bag. I have been talking alot with a psyciatric nurse until 2 years ago, and that was very helpful for me. She understood me more than other. I wish you the very best. And I wish you the very best. It will not take you 8 years, if you get to know about Fatigue syndrome early. I didnt know about it so early, so it became very stressfull. Normally you cope with it easier. But this was me, and you are you 🙂 Just ask if you like. I am here if you like a new friend from Norway 🙂 Hugs
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.