Hi

I currently work for a children's hospice, inLuton Bedfordshire and over the last couple of years have supported families emotionally on their child's cancer journey 

Once their treatment has finished many of these families move into a "what if it comes back" world. They find it extremely difficult to be positive and happy and in many circumstances their need for emtional support increases.

They are also informed by the hospital and even hospice, "now your child is better, we will discharge you. Don't worry there lots of support out there for you to access."

I looked for several of these families and there is nothing which would ter needs. Some are offered parenting courses, to help them manage their child and all their own thoughts and fears.

Not many professionals warn them about long term side effects such as chronic fatigue, muscles and limbs that are so painful, they cannot get out of bed, their ability to learn can be impaired, they become isolated because they can't do what there peers can do, a good chance they won't have  children.

If you have any stories or instances which h you can share pleas do so,  no names necessary just any positive or negative thoughts.  thanks for reading Steve

There is a huge gap in Survivorship support for "well" children and adult's. My reason or sharing this is to hear parents stories about life after cancer, and do they really feel normal again!