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CANCER OF UNKNOWN PRIMARY FOUNDATION

Mutual support

 

Living with a CUP diagnosis

Any cancer diagnosis is stressful; because of its ‘unknown’ characteristic, a CUP diagnosis is particularly stressful for patients, and their loved ones. However, 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 and Meaningful.

 

Our interactive forum

Our interactive Forum is a way to gain shared understanding of CUP and gain some comfort from ‘comrades in adversity’. We believe that interacting in this way can help in a person’s journey to establish some sense of understanding, management and meaning. Most importantly, you are not alone (a feeling affecting many CUP patients because it is such a little known cancer). Whilst no CUP diagnosis is the same, other people’s experiences can be very helpful – whether they be ideas about relieving the side effects of chemo or finding out the experiences of those with similar treatment regimens. The forum is for patients, their loved ones and those concerned with CUP to interact and to share ideas, concerns and information. We encourage health professionals to join the Forum as well.

How to register

Registration should take just a few minutes. If you are not familiar with Forums this can be a bit daunting:

  • Go to Forum registration
  • Insert a ‘username’ and your email address into the respective boxes. Your username might be your first name, or your first and second names, or a nickname. We have a ‘CAPTCHA’ system in place to stop commercial spam machines registering. You will see a box where you will need to answer a very simple maths problem (like 7 minus three =……).
  • The system then activates your account and you are sent an eMail with your password.  It may take anything from 1-20 minutes for the email to be sent to you automatically.
  • Once you log back in with your details you can edit your password to make it easier to remember. It would be very helpful if you would upload a photo or image of some sort that identifies you. This makes the interaction more human!

As with all such sites, we have Terms and Conditions (T&C) and by registering you accept these T&C. Please look at the T&C before registering.

Spam

Those who are used to Forums, and those who have come from our old forum (Meeting Space), will know the problems of unauthorised people hacking into the forum and leaving irrelevant messages. We have a ‘spam’ system in place on this forum called Akismet which works by  monitoring millions of blogs and forums, watching the methods and tricks used by spammers in real time, and aims to stop them from hitting us. If we find that we do have a problem with spam we will review the options but hopefully this will be a simpler but equally effective system.

 

Your story in the Forum

If you are not familiar with forums, and don’t know where to start, it may be helpful for others accessing this site – patients, friends or carers – if you begin by telling your ‘story’. It can be really useful for others facing a difficult time and others’ can join in perhaps with helpful ideas. The sort of things you might wish to cover are: What were the symptoms, how were they identified and what happened in the referral process. How was CUP explained and what treatment routes were proposed? Was a private or Health Service route followed? How was the treatment managed; what side effects were suffered; where there particular issues with anything e.g. nutrition and how were they tackled. Was counselling offered, were complementary therapies etc. available and were they helpful? You can read stories from previous years – see quick links top right. Please note that these are placed here for people to share experiences, good and bad, and they do not all make for comfortable reading.

‘My Story’ transcripts (2013-2012) from the old Forum

‘My Story’ transcripts (2011-2010) from the old Forum

My Story’ transcripts (2009-2007) from old Forum

‘Treatment’ section transcripts (2011-2013) from the old Forum

Telephone talk

We realise that not everyone is comfortable with interacting in the electronic medium. If you would rather have a telephone discussion with us please use Contact to arrange a telephone call. Because of the problems of misuse we do not publishing a contact telephone number until contact has been made.

Please note that Jo’s friends does not offer medical advice – these interactions are for sharing information and offering support. If in the UK, it is sometimes possible to put you in touch with one of our medical advisers if you have a particular query with regard to a complex diagnosis.