Living with a non-curable disease

The experiences of others

People who have already walked this path have left recommendations for others in a similar situation:

• Focus on what is important to you and what makes life meaningful despite the illness.
• Communicate your wishes, goals and priorities to the treatment team and your loved ones.
• Speaking out what moves you in your heart, sharing your suffering and not being afraid of strong feelings.
• Always create space for beautiful things and happy thoughts.
• Tackle the things you still want to put right in your life.
• Get help, support and comfort.
• Gradually making peace with the losses that the disease brings with it.
• Hope for the best and prepare for the worst at the same time.

The last point is the most difficult for many. After all, very few people like to deal with the questions that could arise shortly before the end of their lives. Some even shy away from “painting the devil on the wall” out of concern, thereby virtually invoking misfortune. However, it is important to realize that open communication about death and dying does not speed up the dying process. And it has nothing to do with giving up.

The opposite is the case: in the long term, openly expressing feelings, thoughts and even wishes about approaching death has a relieving effect – even if this initially means confronting existential issues.

Sharing suffering with one another

Sometimes families form an “alliance of silence”. This means that some things are not addressed in order to spare each other, even though everyone knows about them. The approaching death is then permanently in the room – and yet everyone remains alone with the suffering and also the unsaid. However, children in particular should be given the opportunity to prepare for the death of a parent. Psycho-oncological and palliative medical support, discussions with other affected persons, the family doctor or spiritual guidance can be a support for everyone involved in such situations.

In addition to this existential content, practical everyday topics may also become important in the course of the project: Do I need aids such as a shower wheelchair or a care bed? Is there financial support available and where can I apply for it? How do I draw up a will? The Cancer League and social workers often know what to do in such matters.

Planning ahead and looking back

Palliative care specialists recommend planning ahead on three levels: general planning for the future, disease-specific planning and a “Plan B” in the event that you are no longer able to express yourself.

In addition to this “looking ahead”, “looking back” also has an important place at the end of life: what achievements in your life so far were you proud of? When did you feel most alive? What hopes do you have for your loved ones? What has life taught you that you would like to pass on? These are four out of ten questions that can be discussed during “dignity therapy”. This brief talk therapy can help you to say goodbye with dignity and leave a lasting memory for the bereaved.

What you can do

• Ask your doctors or other members of the treatment team anything that is important to you. It is best to make a list of questions you would like to ask in advance.
• Ask questions if you don’t understand something and persevere where necessary to get clear answers.
• Don’t ask about things you don’t want to know at this moment. Let your treatment team know what you do not want to know and what you do not want to talk about at this time. You can do this at a later date – or not. There is also a right not to know.
• If you want to obtain information on the Internet, choose trustworthy websites. Even reputable-looking websites with seemingly high traffic figures or good ratings from other users can provide false information.
• State your complaints as comprehensively as possible. Body and soul are an inseparable unit. The best possible control of pain, nausea, fatigue, sleep disorders or other symptoms prevents unnecessary suffering and improves your quality of life. In addition to medication, non-drug measures are also used.
• Let your treatment team and your loved ones know what is most important to you in your situation. Do not hesitate to express your needs.
• Don’t be afraid to ask others for help. Accept help that is offered to you if you feel like it.
• Think about who or what can give you comfort. This could be, for example, a pastor, religious texts, spending time in a favorite place, a pet …
• Involve a trusted person in discussions with experts or for important decisions if this support is good for you.
• Some sufferers report a feeling of isolation from other people due to their knowledge of approaching death, which is not shared by others. Perhaps you would simply like to hear how others deal with such a situation and/or offer support to others yourself. All self-help groups in Switzerland are listed on the SelbsthilfeSchweiz website. The Cantonal Cancer League, your psycho-oncologist or cancer specialist will also be happy to help you.
• For many people, it is reassuring to put their wishes in writing (and as precisely as possible for their situation). This ensures that your relatives and the treatment team act in your best interests even if you are no longer able to express yourself. Advanced care planningis recommended. Among other things, it contains a detailed living will that addresses various individual emergency situations. This is worked out in approximately one to three intensive discussions with you and your relatives. Further information and addresses.

There are various short talking therapies specifically for people with advanced cancer (for example CALM – Managing Cancer And Living Meaningfully; Dignity Therapy). They help us not to lose the meaning of life and to face the approaching end of life.