A new Forum here?

[WifeampMum]

Hi all

I thought I would stick my neck out here and suggest that PCUK provide another forum on this site, to be called “Worried about possible pancreatic cancer”.

The reason for my suggestion is that it would be easier for such worriers to find relevant information and mutual support. Also I don’t feel that the forums that these folk normally use (“General chat” and “Patient experience”) are particularly appropriate.

I don’t mind owning up to the fact that I cribbed this idea from the US site Cancerforums.net https://www.cancerforums.net

- which has its own “Worried About Cancer Forum” as well as a “Pancreatic Cancer Forum”

This is its Welcome Page, which I think is spot on:

****************************

“Welcome to the Worried About Cancer Forum.

This is the forum to post in if you may be worried that you have cancer. If you have posted elsewhere and find that your post is moved here it is because you can only post in a specific cancer forum if you or a loved one have a diagnosis.

First a word about Cancer forums. Our mission is to provide support to people with cancer and their loved ones. We do this through our shared experiences in our journeys following cancer diagnosis. Most of us came here after our diagnosis, very few have stayed after posting to this forum. That is a ray of hope for all of you.

We do not diagnose cancer as we simply cannot do that. Therefore the only advice you will get is to follow up with your doctor. You can ask a few questions regarding the diagnostic process as we have all been through that, but you must avoid posting continually asking questions we cannot answer. If that happens your thread will be closed.

Having your thread closed does not mean you are being punished. It also does not mean we are angry with you. It only means that we have done all we can for you and we are simply trying to help you from being overwhelmed with anxiety. If at a future date you do end up with a cancer diagnosis then you can start a new thread in the specific forum for your cancer.

The other thing to avoid is googling your symptoms on the 'net. Doing so will only increase your anxiety as google always points to the worst possible outcomes. Never mistake your random readings on the internet with the doctors medical degree for that is the way to anxiety and can alienate your doctor. Have faith that the doctor knows what he or she is doing and if that faith is lacking then seek a second opinion.

We understand that you are worried about your future. We have all been there and know how this feels but please be patient and let the doctors do the diagnosing and try to distract yourself as best you can while testing is ongoing. Very few cancers are a medical emergency so you do have time, in other words do not panic!”

*********************************

Feel free to reply below if you support this suggestion (or, of course, don’t support it).

W&M xx

[Justamo]

Brilliant, W&M. I'm all in favour.

Regular forum members will remember somebody who hadn't even been diagnosed with PC posting under the 'Advanced PC' thread. A person using the same pseudonym also posted on the Lung Cancer forum because he/she had a headache so thought it was brain mets. Incidentally, he/she used the same symptoms to qualify themself for both PC and lung cancer.

If somebody does have worrying symptoms then it essential that they seek medical advice immediately and insist that relevant tests be carried out . Time is of the essence when it comes to PC .

But sadly, more and more people are turning to Dr Google and not sticking to legitimate websites. Even our local TV news carried a story last week about a woman who had 'cured' herself from PC using an eccentric diet. Mostly green tea, from memory - it may also have involved some shellfish, I didn't really listen.

Our forum is a sanity-saver. Unfortunately it can also be used to feed and inspire health anxiety sufferers. This is a horrible affliction and requires a lot of professional help, which, in these days of austerity, is not always available. I am not belittling this condition, because I knew somebody who suffered from it, and it's a dreadful thing to live with. It has consumed at least ten years of her life, and she is still convinced that she has got breast cancer. The same person buys thyroxine from an Indian web site because she thinks she has a thyroid problem.

It would be interesting to hear other's views on this.

Mo

[Didge]

I don’t think that would work here as the display of the most recent posts doesn’t show which forum the post is in. I do think it would work better if a reason had to be given for joining so that the admins can gently direct people away from here if it’s not a suitable place for them to be posting.

[Marmalade]

I think it's a great idea but Didge has a point too. I'm for anything that gets the prediagnosed support to tackle their GP's and a fast route to diagnosis and to get those with acute anxiety or IBS to the forums and groups which can best support them. We all understand that anxiety can cause real problems and that this in itself is an illness. Sadly some of those posting have little or no regards for the feelings of those who have PC or who are caring for patients, again this can often be a symptom of certain mental health issues.

We do all have a choice and do not have to read posts from those affected, in many ways deciding not to engage is the best thing for those who are refusing to take any responsibility for their lifestyle and seeking reinforcement from others that it is something "someone else" has to do something about. My policy is now to ignore but I do think the nurses might intervene and post to say that they have contacted the poster and referred them to a more appropriate site, otherwise it just looks like they are not doing anything to redirect this behaviour.

Good Post W&M

Marmalade

Edited December 11, 2017 by Marmalade

[Veema]

My 'recent posts' section shows which forum the post is in. I think it's a good idea. I also think it's important that new people whether diagnosed or not are able to post, but I also think there should be some intervention when things get clearly out of hand and someone is just posting for the attention or because they have some sort of mental/anxiety illness (we all know who that person was).

[Justamo]

There is no doubt that health anxiety us a truly awful condition, and I feel very sorry for those who suffer from it.

However, forums of our kind can enable sufferers to make themselves worse. When I first began to be concerned about Peter's symptoms I did lots of searches on the net. I was astonished at how often the same names - or pseudonyms - popped up on a whole host of different sites. On a few sites some people had had their posting privileges removed, with a brief explanation as to why.

I worked alongside somebody who tortured herself by reading every possible 'health' blog. When somebody's baby son got meningitis, she got a headache. When I got cervical cancer she went for smear tests almost weekly, and paid for them. Looking in the mirror at ten minute intervals she became convinced that her eyes were bulging and bought some thyroxine from an Asian web site. (Why ?) She pestered the life out of a young man who had been diagnosed with rheumatoid arthritis and developed a limp almost immediately. And there is no doubt that she really did suffer all these symptoms. She was wretched, and I felt desperately sorry for her. It's an awful affliction.

But she thrived on forums for various groups of illnesses and it was easy for her to fixate on a disease and then amend her symptoms to match. In the current climate of openness and discussion about mental health it may be easier for these sufferers to get the help that they really need. But test after test and denial of negative results simply prolongs the delusion and postpones appropriate treatment.

Yes, there have been some spectacular oversights by GPs. But we all know how quickly this disease snowballs and sooner or later an accurate diagnosis will be made. Ultimately we are all responsible for our own health and it is up to us to seek advice and a second opinion if we are not satisfied.

Sorry to get on my soapbox but I speak from compassion for those who suffer from health anxiety, not scorn.

Mo

[WifeampMum]

Thanks lovely ladies, for your comments.

I think we’re all agreed that, for the unfortunate folk who suffer from serious health anxiety (which is a horrible horrible condition), this site isn’t the best place to hang out.

Like Veema, I feel that people should be able to post before they get a diagnosis, but also that the moderator should intervene if it becomes clear that their continued posting isn’t in anyone’s best interests.

Didge - when I view ‘Recent Topics’ on my iPad and computer, I can see the forum name in the short display. But on my phone I can’t (presumably not enough screen room).

Marmalade, I also avoid engaging, but others don’t (which I completely understand and respect), and so the extreme worriers continue posting.

As this* seems to be an increasing presence in forum posts, it would be good to get a response from PCUK as to whether anything can and/or should be done about it.

*cyber-chondria

See http://www.bbc.co.uk/news/health-41176729

P.S Proud Wife can’t post here at the moment but has messaged to say that she also strongly supports my suggestion for a new forum on this site.

Best Christmassy wishes to all

W&M xx

[Dandygal76]

I think you all know this hits a nerve with me especially around dealing with actual PC on this forum and away from here. I am fine with people posting their concerns but when they really have exhausted every avenue and talk about a tiny cyst etc and the doctors are clear it is nothing then I get frustrated on the repeat posts. I also should not post frustrations because it may prevent other people posting and I would not want to miss one that we could genuinely help.

On reading what Marmalade and Didge have said I would still prefer a separate forum area. My reasoning is that it does make people with concerns have easier access to info as they can just go through the posts on that forum. If we then responded a few time on that forum then we could hence forth refer everyone to said answers already there. x

[PCUK Nurse Dianne]

Thank you Wife and Mum for the research and excellent link, and also other ladies for your thoughts and suggestions.

We have received similar feedback to what is being discussed on this thread and have responded to these individuals and thank you for raising your concerns. We will be reviewing how the forum is being used in the new year, and this is one of several agendas we hope to take forward.

As I am sure most of you know being regular users of the forum, if nurses do have contact with anyone outside of the forum then this is via the Support Line which is a confidential service. It wouldn’t be appropriate to share with anyone in the forum if the nurses are providing support in another way, and I am sure you all appreciate this yourselves.

I hope this does reassure you that we are aware of the regular discussion on the forum and may be approaching some of the issues in a not so public manner. We do thank you for your understanding and continued support of all forum users.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[WifeampMum]

Dear Dianne

Many thanks for your response on the forum and your email to me.

It’s good to know that there’s a review planned in the new year and I’m sure that PCUK will come up with solutions that sensibly and sympathetically address issues raised in this thread.

I also appreciate that time spent moderating the Forum takes you away from your Support Line work and none of us would want the latter compromised in any way.

Dianne and Jeni, you are complete stars. Thank you so much for all you do for the residents of Planet PC. You’ve certainly made my (and hubby’s) life here brighter and easier to cope with.

W&M xx

[Marmalade]

I take a breath before making this comment as none of us would want Dianne or Jeni to feel we were not 100% supportive of them, which we are, they are indeed very special people for whom we would walk on hot coals but surely it is possible to say that PCUK has contributed without revealing any confidential information?

Marmalade x

[fifi]

First let me say how truly sorry I am to have upset so many people. I never realised my posts would cause this amount of trouble. Please forgive me. I do continue to be very concerned about my physical symptoms which are getting worse and remain as yet undiagnosed. I can understand how strange it seems to you that I am not reassured by the tests and reassurances. Anyway, although I will continue to read posts here I will refrain from posting in the future unless I get a definite diagnosis. Sending you all my very best wishes,

Fiona

[WifeampMum]

Dear Fiona

Rest assured, at the very worst you’ve caused minor upset to less than a handful of people here. I suspect most of us who post here regularly have unintentionally caused offence from time to time, I know I have.

W&M xx

[Dandygal76]

Firstly hun, I hope you never get a diagnosis like this - I am really routing for you on that one!

Secondly, at times we are very stressed over various issues around fighting this illness or supporting people and it not so much as causing offence (minor as W&M states) but there really is nothing else we can say or do to support you as you have exhausted everything we know to solve your issues that everyone else is seeing as not PC related and which has been eliminated. It is so so difficult trying to help people with the impossibilities and horribleness of having actual PC or people who have a clear risk they will be imminently diagnosed. There is nothing else in my armoury I know of that can help you.

I do wish you all the best and I hope you do find the solutions to your health because I am not diminishing at all how awful you must feel, just how we can help.

xxx

[BlacJAC]

Having been guilty of this in the past myself, I can appreciate where both sides are coming from. Being in the undiagnosed part of any illness can and is very stressful, and can and is very debilitating at times. It's also true that having no answers can be every bit as bad as being faced with a certain disease when you seem to be wasting away to nothing or suffering badly with no answers as to why. Even though medical science has moved on tremendously, there are still a lot of things they can't do and will be times when some individuals aren't going to get answers.

As I've said many times in the past, there are people here who helped me through a very, very dark and awful period of my life when I had my own grave dug before I had even had a proper hospital appointment. I needed a firm boot up the backside and i got it. I never felt slighted, I'm actually eternally grateful to those who did it.

The stuff being banded about regarding health anxiety/cyber hypochondria is so very true. I was reading stuff daily, so much so my partner even said it was like I was getting a kick out of scaring myself half to death. I'd calm down, read many articles all over again etc and be back to square one. I knew what the end result was going to be, yet I still continued.

A very bad habit we probably all have is to band every symptom we have together and come up with a single illness, the picking the only canary out from a nest of crows if that makes sense. The reality is, the human body is made up of numerous parts and it's common for people to have 2, 3 or more ailments unrelated to one another at the same time. Yet because we're unwell or not feeling 100% we assume it's all related. It wasn't in my case.

It's silly when you think about it. We come to a place to seek reassurance from people who are going to see PC symptoms in everything as it's a PC dedicated forum and being told "yes,I/my partner had that symptom" is going to be a fairly normal response. We also believe medical unqualified people more than we do people who have dedicated years to dealing with certain illnesses/conditions. Like i said, it's silly and borders on stupidity. I mean, go onto an IBS site and you'll get people telling you that's their symptoms of IBS so it works for every imaginable GI condition out there.

I like to return to these forums from time to time to return the favour others afforded me and put those who remain undiagnosed at ease that it really is more likely to be something less sinister or treatable.