The “Cancer in the family” Checklist

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Cancer in the family can be harrowing and overwhelming, as I unfortunately found out from personal experience. Although it is very common, people in Egypt rarely talk about it after, or attempt to share their knowledge or experiences, forcing every family that goes through it to start from scratch. I avoided this by calling and talking to 8 different friends who went through this, and from those conversations this framework/checklist was formulated. I personally used it during my ordeal, and it made everything easier, or at least slightly less awful. So, I am sharing it with all of you, and I hope it helps give you a handle on this situation.

This framework / Checklist has 4 main pillars, and they are the following:

Official: Regarding all the uncomfortable official things & housekeeping
Treatment: Decisions and options
Care and spirit: How to best handle this shitty situation
Personal: You need to take care of you too

1. Official:

Legal situation:
- Where are all their legal papers and contracts stored?
- Are they organized, filed, complete and safe?
- Do they have a lawyer that you should get familiar with?
- Does the lawyer have a letter of agency from them? What does this letter of agency give the lawyer the authority to do exactly?
- Do you have a letter of agency of your own?
- What legal issues do you need to tackle?
- Did they make you a co-signer at their banks (everywhere), so you can handle all financial transactions if they are incapacitated or in a coma or unable to come themselves or sign their own name?
- Is there a will?
- Is there any legal situation/ conflict You should be aware of, current or past? Especially ones regarding other family members? If there are dark secrets, it’s better that the new generation is aware of them.
- If بعد عمر طويل they passed away, where do they wish to rest?

Assets’ assessment:
- What assets do they have? And where?
- Are they liquid or is it tied to CD’s, assets, lands and/ or investments?
- In the case of lands and investments, are there any partners? What is their deal?
- Are there current liabilities you must pay off? Any that are increasing by the day?
- Which banks do they use?
- Who is their accountant?

Financial planning and decisions:
- How much will the treatment cost, including travel and living and care for the next year?
- How will it be handled?
- Will it negatively affect or wipe their current financial situation? What about yours?
- If it doesn’t affect it negatively, what are their financial wishes and desires?
- Who gets what? And How should they get them: Inheritance law? Official Will and testament? Transfer of ownership contracts? Established trusts? Or through informal family code and norms?

Post-passing planning:
- Is there an official نعي with a certain format with all the proper family names and in-laws ready?
- Which Mosque/Church do you intend to go through for the prayer?
- Where will he be buried, how will he get there and how much will it cost?
- Will you hold a public عزاء or one at your home?
- If it’s a public عزاء where do you prefer to hold it and how much will tit cost? (Tip: the closer to home the better on that day)

Living history:
- What questions did you always want to ask them regarding past events and choices but never did?
- Besides legal situations and conflicts, what other Family related old and festering drama should you be aware of?
- Anyone you should be wary of afraid of?
- Are there any secrets that they didn’t reveal yet but should have?
- Any current issues that they are integral in resolving or agitating?
- Who else can you ask besides them for corroboration and or perspective? Memory is a fuzzy thing.

2. Treatment:

Strategic decisions:
- What is our goal? Is it full recovery, or prolonging life for the short and medium terms, or ensuring that they are as comfortable as possible?
- What kinds of treatments are available?
- Who are our trusted medical advisors?
- What is the treatment plan?
- What is the timeline?
- What are the Metrics?
- What are the back-up plans (surgical or medical) in case initial treatment fails or situation deteriorates suddenly?
- Are those back-up treatments available or will you have to go elsewhere?
- What about pain management to those beyond conventional treatment?
- Do you stay honest with them all the time about their condition, or do you agree to a degree of discernment when conveying news?
- Who has the trust and authority to make decisions for them if they are incapable of making them for theirselves for any reason?

Operational decisions:
- Where will they be treated?
- Is it locally or internationally?
- If it’s internationally, is there a local hospital they can check in with for when they come back home during treatment breaks?
- If it’s locally, is it in a hospital or at home?
- If it’s a local hospital, who there do you know?
- When, medically, is the point where you know that treatment is offering diminishing returns?
- When do you stop the treatment and bring them home?
- What happens in the case of a Coma? Life Support or DNR?

3. Care and spirit:

Before we get into the questions, you should know that the experience you are about to go through can be so grueling that it psychologically crushes people for life. The sense of Helplessness fuels the desire to take care of them, which in turn means that your life is now at said Parent’s beck and call at any point of the night, for any reason (many of which not pleasant), while dealing with increasingly erratic behaviors and demands due to the pressures of the situation. This will only eat up your life and energy, completely disrupts your sleep, fill you with guilt for being miserable about it, while watching your parent wither away over time in front of you.

So, the most important rule: If you – for your sake and that of your siblings and family members- can afford to, avoid day-to-day taking care of your loved one by getting them round the clock paid care. They will get the help they needs, and you will get to save at least 20% of your sanity. I hope this explains the reasoning behind some of the questions in this section. Other tips will be available in the subsequent mental health section.

Care Location:
- When they are not getting treatment, where will they get care?
- If prolonged hospice care is needed, can it be done at home?
- If You don’t have the capacity at home, are there elderly homes that come with 24/7 medical care and facilities?
- If so, how much do they cost and where are they?

Day-to-Day Care:
- Do they have a paid live-in gender appropriate helper to stick by them and help them with their daily needs? If not, can you get them one?
- Can you also get them a frequently visiting nurse to do the medical check-ups, treatments, and cleaning?

Emotional / Psychological Care:
- Are they always surrounded by loved ones and friends?
- Can you arrange with some of them recurring visits or video calls, so they don’t feel isolated or lonely?
- Can you start recording videos or audio files with stories from them about their selves, their life, and their lessons for your kids when they grow up?
- Is there a place they wants to go see again?
- Is there any place they used to go to often to meet their friends? Can you make sure to take them there?
- Can always take them outside the house for a drive 3 or 4 times a week, since they will be sick and tired of being in rooms all the time?
- Any food they like?
- Any music they wants played?
- Any memories they love telling that you- by asking them to tell it- can bring them back mentally into this place and away from the current situation?

4. Personal:

Assign, Plan and Delegate:
- What is the care capacity/limitations of you and your family members, given that all of you are adults with lives?
- What is a support schedule you can all agree on?
- Who else in the family/friends’ circle can help and how?
- Who will take which tasks from the previous sections? Fell Free to assign to anyone who says “If there is anyway I can help..” a task. They offered. Let them help.

Take care of yourself:
- Can you get a therapist to process your feelings and trauma during and after?
- Can you do the same for your family?
- Can you find a grief specialist to help with after?
- Can you create and keep a daily routine with sports and meditation throughout?
- Can you make sure to take said family members on fun escapist outings – like the movies or a unique experience- to make sure that both of you get a mental break from any sense of gloom?
- Is there another friend or family member that went through a similar situation that you can talk to or have them share their lessons?
- Are there support groups for Cancer families for you or your siblings to go to?

Think of what You want:
- What places do you wish to take him to?
- What conversation do you wish to have with him?
- What experiences do you wish him to have with you?
- What experiences do you wish him to have with your kids?

That is all I have. I hope it helps. Also, the best of luck and wishes. My heart goes out to you <3