Checklist for cancer patients

General

This checklist is for those who have been diagnosed with one of PALEMA’s cancer diagnoses; pancreatic cancer, liver cancer, bile duct cancer, stomach cancer or esophageal cancer. The checklist is also available as a downloadable PDF that you can print out if you wish.

1. information about your diagnosis

Read everything on the PALEMA website about your diagnosis, don’t miss reading the stories. Feel free to watch previous webinars or read previous articles regarding your diagnosis.
https://palema.org/en/types-of-cancer/

2. your rights

Read all about your rights as a cancer patient – or family member of a cancer patient.
https://palema.org/en/support-hope/your-rights/

3. Become a member

Join PALEMA as a member or monthly contributor (monthly contributors get the membership for free)
https://palema.org/en/support-us/private/become-a-member/
https://palema.org/stod-oss/privatpersoner/bli-manadsgivare-palemavan/  (in swedish)

4. PALEMA Facebook groups

Join the PALEMA closed Facebook groups, there is a group for your specific diagnosis. There you can discuss with other sufferers and get advice and tips. Many speak english. Be active in your group and you will receive a lot of useful information (member benefit)
https://palema.org/en/support-hope/#discuss-fb

5. Second opinion

Always ask for a second opinion, which the doctor is obliged to write. Search for tips on the best hospital/doctor for your prognosis through PALEMA’s Facebook groups.

6. read on 1177

Read your medical records if they are available on 1177 or similar systems. However, be aware that there may be “scary” things written in medical terms that may not be so serious in reality.
https://www.1177.se/en/Gavleborg/other-languages/other-languages/

7. Bring support to doctor’s appointments

Remember to always have a family member or friend with you when you visit the doctor. You have the right to an interpreter if you need one.

8. Written care plan

Ask for a written care plan and try to get a telephone number or an e-mail address for the doctor in charge. The contact nurse will always give you a telephone number and sometimes an e-mail. Ask if there is an emergency number you can call in the evenings/weekends for someone who knows your diagnosis (in addition to 1177)

9. MDK or nMDK

Ask if your case has been or will be discussed at an MDK or an nMDK, (i.e. a multidisciplinary conference or a national multidisciplinary conference)

10. Become your own project manager

Take control of your disease journey. Keep a ‘diary’ of everything you do, such as doctor’s appointments, medication, treatments, phone calls, how you feel, etc. Always take notes at appointments and always take your medical records with you when visiting different care centers, nursing homes and hospitals. “Hire” a family member or friend if you cannot do it yourself.

11. support group meetings

Feel free to attend one of our support group meetings, these are available for both directly affected and relatives. Most are digital so you can participate from home.  Meetings are normally in swedish, but most likely some in the meetings also speak english. Check our calendar to see when the next one is scheduled (member benefit)
https://palema.org/kalender/

12. telephone support

If you feel the need to talk privately to someone who is or has been affected by one of our cancer diagnoses, PALEMA’s telephone support is available (member benefit). Make a note in the form that you speak english.
https://palema.org/stod-hopp/#telefonstod

13. Bereavement allowance

If necessary, apply for an allowance for a relative/next of kin. The doctor issues a certificate to Försäkringskassan.
https://www.forsakringskassan.se/privatperson/sjuk/anstalld/narstaendepenning-for-anstallda (in swedish)

14. Aftercare

After a “finished” treatment, require a plan for aftercare, the health center is not up to that task.

15. IMPORTANT

✓ Exercise, take walks, do gymnastics
✓ Talk to friends and acquaintances about your illness.
✓ Ignore the statistics – think positive