End Of Treatment

message: Hi there,
I have just read your post and want you to know I know how you feel. When you are in hospital there is always a doctor or nurse there to guide you and now you feel alone. The last nine months has been hospital, hospital, hospital and now you need to adjust to outside life. But please believe me it does get easier.
My son was diagnosed with a osteosarcoma begin 2008 and our treatment ended Sept 2008 we are now 18 months post treatment, and touch wood doing great. You are now entering into the 3 monthly visits for scans and xrays the worries of every cough cold and sniffle. It really does get easier. The best advise I can give you is stay positive.
It is a very trumatic time and I felt to start with it was worse than finding out because we we alone but we got by one day at a time and one week by one week. I still get nerves every now 6 months but it is easier now, and it will be for you.

All the best
lindsell

message: Hi Daloriana
I have just read your message and everything came flooding back like it was yesterday. Our daughter (now 9 and a half years old) was diagnosed with a Wilm's tumour grade IV in 2003 just after her 3rd birthday. We also found it quite hard to adjust once the treatment had finished and were waiting for her next scans and check-ups. Suddenly you realise that you should be trying to get back to a "normal" routine and everyone around you is so pleased they have finished their treatment but for some reason you can't seem to share all their happiness because you are so worried about the unknown. We too had wonderful support from friends and family but found it hard to tell them our true feelings. I think also you suddenly (as parents) have a little more time to realise what has just happened to you all in the last 9 months or so and it hits like a tonne of bricks. We found a lot of therapy by throwing ourselves into fundraising and still do!
This year our daughter is five years clear in June and to celebrate we are all going down to London and I am running in the London Marathon for CLIC Sargent.
Our thoughts are with you and please feel free to ask any questions, we know how you feel.
Take care,
Louise and family

message: "Dear Dalorian, I'm so glad to hear that you're out the other side of
treatment. Hope the first scan goes well. My daughter has another 3
months of treatment left then 3 monthly head and neck scans. I'm quite
looking forward to being free from the hospital but don't know how to
manage the unknown of whether the cancer will return. Be glad to talk or
share experiences if it'd be helpful. My daughter is nearly 5 n has
alveolar rhabdoymosarcoma - so not the same type of cancer. Might be
worth asking your CLIC nurse for some contacts too locally as it is
difficult when your family wants you to be positive. I find sharing
worries with other Moms who have kids with cancer very helpful - we have a
shared language that others don't or can't listen to.

All the best
Suzanne"

message: Hi Suzanne, My son also had treatment for a rhabdomyosarcoma, his diagnoses was in jan 07; we alo have check up
head neck and chest , every 4mths now.so far so good.... It does get easier, it is no longer the first and last thing on our minds. Our children have been through so much we owe it to them to be positive and and not let cancer keep us living in fear, we have lived with more fear than most familys willever know. my boy is doing well, and I am grateful, also to Daloriana, my friends son has just been discharged aged 12, after having a wilms when his was two weeks old. Take care Gracie.

message: Also Suzanne, I think you have explained everthing in your one sentence " we have a shared language that others dont or cant listen to. I find I am explaining a lot less to people now, as they seem embarrassed or uncomfortable, i know they dont mean it, a lovely man i met while my son was having treatment told me "we are all members of an exclusive club we never wanted to join", his son was 12 when he had his treatment he is now 32. Take care Gracie.