I am writing a post today based around a meeting I had at the cancer agency this week about a new initiative to make a "survivorship" program through the hospital system. This is more meant to be a discussion and not me "telling" people what a cancer survivor needs. I can only speak for myself in that regards! I was really excited to be a part of this and even more excited to hear others input! I will have the opportunity again to discuss this further so any input is welcome!
Finishing cancer treatment means a lot of things to a lot of people. No two people are the same. Depending on what combinations of chemo/radiation/surgery/other things someone gets it can leave you in a variety of places. As such, the agency is attempting to make something that will work for everyone. As such, a variety of topics are needed, for experiences and age groups.
Some of the main topics that we discussed were:
1. Prevention of secondary cancers (not recurring, but preventing new cancers)
2. Checkups, and all the tests that go along with it (GP vs oncologist)
3. What lifestyle changes can we make to help the cancer not coming back.
4. Rejoining the work force.
5. Long term emotional support and counselling
6. Community resources
7. "Other" was the last topic.
(All of these had sub sections of course)
One thing I thought might be important was to divide it into two main sections of "immediate needs" and "long term" needs. I know from when I finished treatment my immediate concern was to get back into a workable body shape. I had lost basically all my muscle, had no energy and was generally in a really bad state. I wanted to be useful again. A topic that wasn't really covered in too much detail. Long term, a lot of my concerns were emotional after I had gotten used to the physical, it was more dealing with things less scan anxiety, concerns over whether or not cancer would come back. It was more in my mind as opposed to my body.
Another important thing I thought could be helpful would be something like "caregiver survivorship". Cancer certainly takes its toll on the person directly effected, but it can really wear out those who are caregivers as well. I know care givers can be forgotten about in this whole ordeal because they are not sick, but I have seen just how exhausted they get as well. It really does take a physical and mental toll and them as well, and we can't forget about them. The deserve to "feel better" too when it is all done.
I felt rejoining the workforce was really important, and tried to get a section for "employers" and maybe some helpful things to discuss with them. I know when I went back to work, it was the standard "great to have you back, everything is normal again", which we all know now really isn't the case. Having tips for return to work strategies would be great.
We also discussed greater awareness of community resources. It wasn't until after my treatment had completed and a year had gone by that I found out about a young adult support group....three blocks from my house. It would have been great to know about this during everything!
It is hard to sum up everything survivors need, but any input is greatly appreciated. In reality, every hospital has limited resources and only so many things can realistically be covered. It was great to hear that there are more people working towards this goal. So any thoughts or input would be great for my next meeting and I can let you all know how this project moves forward!
Thanks!
Eamonn
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