Living with a CUP diagnosis
Because of its “unknown” characteristic, a CUP diagnosis is particularly stressful for patients, and their loved ones. We have to find a way to continue to function effectively and be as resilient as possible to the stresses of CUP.
In his 1979 book, Health, Stress and Coping, followed by his 1987 work, Unravelling the Mystery of Health the Israeli- US sociologist Aaron Antonovsky (1923 – 1994) wrote about the relationship between stress and health.
A key concept in Antonovsky's theory concerns how specific personal dispositions serve to make individuals more resilient to the stressors they encounter in daily life. Researching survivors of Nazi concentration camps, Antonovsky identified the characteristics which he claimed helped a person cope better (and remain healthy), by providing that person with a "sense of coherence" about life and its challenges.
Antonovsky argues that to avoid chronic stress we need to try and create a social and physical environment that is:
- Comprehensible
- Manageable
- Meaningful
Our interactive Forum which we call Meeting Space is a way to gain shared understanding of CUP as it affects different people and gain some comfort from “comrades in adversity”. We believe that this can help in a person’s journey to establish some sense of understanding, management and meaning.
Registering for Meeting Space
For patients, their loved ones and those concerned with CUP this space offers an opportunity to interact with “comrades in adversity” to share ideas, concerns and information.
We would ask you to register so that only those with a genuine concern for CUP are able to access Meeting Space. This should take just a few minutes and is required the first time you do it only. The system then activates your account and you are sent an eMail with your details.
In the process of registering you will be asked to put in certain letters which require a bit of concentration. The purpose of this is to stop the spamming machines, which companies use to send out multiple messages, from being able to get into our site. If you are having difficulty with the word or words, note the buttons on the right hand side which allow you to find a "new challenge". If you experience problems registering please e-Mail us.
As with all such sites, we need you also to agree to the Terms and Conditions (T&C) for this part of the website as part of your registration. Please look at the T&C before registering:
Register to access the interactive area called Meeting Space.
It would be helpful for others in a similar position in the future if some of those accessing this site - patients, friends or carers- would consider telling their “story” and submitting it to be displayed here. Details are shown in “Your story”. It can be really useful for others facing a difficult time.
Message board
We do not offer medical advice. We offer information & support which is intended to help patients, their carers, families and friends.
If you have any medical queries you should direct them at a qualified medical practitioner.
Meeting Space
Join others affected by
CUP to share information
& gain support in a moderated forum
Your website and John were my life line when I was diagnosed with CUP in 2009. They have helped inspire my advocacy work for CUP in Australia.
We want to thank John and all of the users of this forum for the support and hope you gave mum.
Thank God for this forum! I cried when I found it!
The immense relief that I have obtained so far from just reading everyone’s stories on this site is incredible. Up to this point I have felt so very alone as no one could give me any advice, nothing to read, nothing to comfort me as I flounder..
At first I was tired of answering the questions about CUP to friends and some doctors but this website has helped me realize that the world needs to know about us.
Dianne (CUP patient, Cana