When such unimaginable misfortune comes to the home of a loved one or just someone we know, we are lost and often don’t know how to behave, what to do, how to help and how not to add to the grief. This list, compiled by parents of children with cancer, will help to say the right words and give the right support.
Communication:
1. Talking about ‘normal’ life without cancer. It can be domestic chitchat or a discussion about politics or the high road, it doesn’t matter what. “That’s how I felt there was a normal life,” writes one mum.
2. Just showing up and not saying anything.
3. To say, “I’m here for you, you can count on me.”
4. Remember important dates in treatment, call the day before, wish you good luck.
5. Record a video to congratulate you.
6. If you or your child is a classmate/colleague, congratulate them, say hello.
7. If you are a teacher, say hello, organize classmates to support you. It is not always possible to meet in person during treatment, but the internet provides many opportunities to create a sense of community.
8. Send parcels with cute little things and postcards.
At the hospital
9. Bringing something you need to the hospital.
10. Substitute in the hospital at least for a couple of hours.
11. Prepare and bring home cooked food to the hospital.
12. Buy and bring medicine.
13. Pick up biomaterial for puncture or other tests and take it to the laboratory.
14. bring the patient to the hospital by car.
15. If your roommate has a problem that has a beginning and an end (e.g., vomiting), help to cope (clean up) and offer something good (watch a movie, taste some jam) right after. In general, to make it clear that the problem is solved, and that it is possible to live normally.
Search for and process information
16. Help with finding information and contacts.
17. Make a list of questions for the discussion with the doctor. Doctors usually give an introductory talk, but when they offer to ask questions, often parents are unable to formulate them due to stress.
18. Borrow a tape recorder/ put a sound recording app on the parent’s phone to talk to the doctor, remind them to turn it on on the day of the talk. This is where stress comes in, the doctor’s story is often quite clear during the conversation, but the information is not retained in the mind.
19. help to create a clear algorithm of action. Cognitive abilities are failing even in the most structured people. Natalia Ledneva: “I have a red diploma in mathematics, and I couldn’t calculate the stitches when I was knitting my husband a jumper at the hospital. I re-knitted it 4 times: then it was 6 sizes too big, then the sleeves went to the floor…”.
20. Find families where children have had the same illness and have recovered, organize a call or letter.
21. find published stories of children who have recovered. 22. Help sort out disability and benefits. 23. Suggest Books to Help, download, print or order paper copies and take them to the hospital.
Children
24. Sit with other children, take them out.
25. To come and visit, to play with the child as a normal son of friends, without being frightened by scars, catheters, bald head.
26. To calmly accept a child wearing a mask into the playground.
27. To think of an attractive menu for the child. During chemotherapy and hormonal treatment the appetite changes, sometimes everything makes you nauseous, sometimes you want to eat all the time.
28. Shaving the baby when the hair starts to come out.
Day today life
29. Help to clean the flat. In some cases it is necessary to wipe all surfaces with a disinfectant solution daily during chemotherapy. All-all surfaces. Every day.
30. Help iron laundry. And put on clean ironed underwear every day.
31. To buy food to take home. A break from hospital life
32. To let go on a shopping trip. 33. Letting the couple go somewhere alone without the children.
34. Give something for handicrafts.
35. Take the couple for a walk or to the country house.
Finance
36. Organize fundraising for treatment or rehabilitation.
37. Help yourself financially.
38. If you are a manager, say: “Go, treat the child and don’t worry about anything”.
Organise
39. Create and administer a social networking group. Most of all, parents are short of time during the treatment period. Telling everyone the same thing about their child’s condition, answering typical questions – it’s all very exhausting and literally “eats up” time. And sometimes I don’t even have the energy to post news. At the same time, the support of a group of friends is much needed, and friends need information.
40. Organize special transport arrangements for the medication, a ferry from another city.
Miscellaneous
41. Pray
42. Arrange for registration in one’s flat.
43. To take up houseplants. The recommendation to get rid of houseplants is due to the opinion that fungal colonies form in the ground. Fungal infections are difficult to treat and delay necessary chemotherapy courses because of them.
46. Shelter a pet, keep the child informed of how it is doing, say hello. Recommendations about keeping pets during cancer treatment are not unequivocal, but oncologists in the former CIS often forbid keeping pets. The need to part with a pet becomes an additional stressor, helping to reduce it.
What not to do because it takes strength away, it makes you despondent, it makes you angry:
1. Saying “Hang on!” and “Call me if anything happens” and go “into the doldrums”.
2. Oohing and aahing, wailing “Oh, what sorrow!”, “For what sins?!”, crying in response to a story about the diagnosis or worsened tests. The family of a sick child has no resources to comfort you. If it is unbearable, say goodbye and only cry afterwards.
3. Saying “Everything will be fine!”, forbidding the child’s mum or dad from crying because “you have to be positive”. Everything will be as the statistics and individual characteristics of the child’s body will allow. And pulling a smile specifically for you also takes strength, which is better spent on something else.
4. Talking about relatives and acquaintances who have died of cancer. However, you can also talk about survivors. There are many types of cancer, different treatment protocols may be used within the same type, and different children may have different reactions within the same protocol. Abstract stories, let alone stories about other types of cancer or patients of a different age, do not help, but take up time, the most important resource. We wrote above that published stories of children who have recovered and getting to know their families are suitable. Published stories can be quickly filtered by “their” type of cancer and family members of a recovered child can answer questions more expertly.
5. Advice on other people’s blogs without being asked. You don’t have time to read and your head is already puffed up and not absorbing the information coming from doctors. If you think a certain blog has the answer to a specific question from parents, send them a direct link to that post.
