Should the support groups be opened up to help the majority of patients?

The support groups are for the minority of patients who can have the operation. To quote the web site:

Support Near You

These meetings are held for patients who have had, or are about to have, major surgery for the removal of part (or all) of their oesophagus and stomach.

According to the Cancer Research UK only between 20 and 30 out of 100 people are able to have treatment to try to cure their cancer (20 to 30%). Why is there no support offered to the other 70% to 80%, i.e. the majority of us? It is only people who have the operation that get invited to the meetings and no effort is made for the rest of us.

I know that the OPA will not allow any mention dying of cancer in front of people who are about to have or have had the operation so they exclude those of us to whom this is a major concern.

My question is should the OPA be an inclusive organisation for all patients or should it continue to exclude the majority so as not to upset the minority who may be cured?

In the meantime I will continue with my self help group of one but at times I wish it was larger.

John

15 Replies

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  • Hi John,

    I was unaware if this is indeed the case and will await an OPA comment with interest. I can understand your frustration if this is indeed the situation. There does seems to be 3 main groups of us on here so I take your point, those having surgery, those who are recovering or have recovered and those who have had a reoccurrence. Charlie's Circle was hopefully going to be used for the latter group so that their issues could be blogged in a smaller and more specialised section but there has been little uptake on CC to date so I assume there's not a need for it? Personally I would value interaction with others in the same situation as myself as we all learn different ways of managing living with this rotten disease. If you are not a candidate for surgery then I assume those people are in the same boat as those of us with a reoccurrence and having much the same sort of problems to cope with? So I do wonder if there's a common ground there with the CC section? Anyone with a computer can google the figures on OC and even those who have surgery are still in a very risky position but their 5 year survival chances are still somewhat higher than for those who don't have surgery. I guess we are all aware of how tough this op is and don't want to worry those about to undergo surgery with negatives which is a very natural protective stance but I really do emphasise with your comments. You have provided me with food for thought though and I'm sure I won't be alone in that.

    PS now there's 2 of us:-)

    Best wishes,

    Charlie.

  • count me in so thats 3 !

  • Charlie,

    It is indeed the case, just look at the OPA web site from which I just quoted the first sentence.

    opa.org.uk/support-near-you...

    John

  • Hi John and Charlie,

    I am not sure where you are in the country, however, there is a group in Oxfordshire which welcomes patients at all stages of the disease and you can contact us on 07711 160 766.

    Kind regards.

    Jackie and Phil

  • Thank you Jackie and Phil but I do live in Kent.

    I was having a bad day. I am due a scan next week. The last one showed progressive disease and I came off the single agent treatment of Herceptin so I am not expecting good news. Also the Clinical Commissioning Group (CCG) of GPs which take over from the PCT have said they will no longer permit the prescribing of the cancer treatment I am currently getting so that is also another worry. I am discussion with them but there must be more like me. I thought a group might be more effective that an individual but the local support group would not be able to offer any help so hence the little rant.

    I have got over it now.

    Thanks again.

    John

  • It is quite true that the majority of OPA local support groups are geared around people who have had the surgery, but it is not completely true of all groups by any means, and some groups mix people up and it works quite happily. I think I am right that the group in Maidstone worked that way for instance when I visited a year or two ago. For quite a few people it is unclear in the early stages whether they will be having the surgery or not. Some of these folk do get put off with the thought of after-effects after surgery; others do not. Some people like to come to a group before the surgery; others do not. The principle we try and adopt is that people should know broadly what kind of group it is in advance. So the quote on the website tries to make the point that if most of the group have had surgery, we should also bear in mind that there may be people in the room who have not had it yet.

    I think that the size of the groups tends to dictate how things go. The larger ones where we invite speakers are not so intimate as the ones where people get together and simply talk about what is on their mind.

    Our helpline is geared towards helping people regardless of their situation and prognosis

    It probably is generally true that we do not talk about dying. Nor about cancer itself very much either. That tends to be because of the predominance of digestion-type problems. But it is quite true that the idea of recurrence does sit on many people's shoulders. The OPA committee had a discussion about this recently and thought that our priority ought to be on the specific problems of getting over the surgery - because nobody else would do this - whereas there usually are other groups that deal with patients in palliative care for other sorts of illness as well, and those type of groups, often run from hospitals, hospices or by Macmillan do cater for people's needs better than we do, are likely to be more local.

    We would like to think that people will find the best place and support for them.

    The other thing to say is that people generally do find the appropriate means of supporting each other regardless of how they are mixed together, and that they do appreciate that there are different outcomes and prognoses for others.

    I hope that this is helpful

    Alan

  • Hi Alan,

    Where I live there are no support groups unless you are fit enough to drive 15 miles to the nearest hospital. Also of course as your condition worsens, it's even more difficult to get out. The Internet is invaluable for people who are restricted by circumstances. I personally have only ever met one other person with OC (with the exception of the OPA meeting I went to 3 years ago) and I am only the 2nd patient in my GPs practice who has had this condition in 20 years.

    Best wishes,

    Charlie.

  • Some good points raised Alan

  • Hi John

    You are so right. Surely the site should be for ALL sufferers of OC no matter what treatment they are going to have or have had. It seems you are written of if surgery is not envisaged either by choice or necessity. I feel a lot more people could be helped by being able to exchange experiences on treatment, symptoms, remedies etc. I have tried to find sufferers who have had no surgery with little success.

    At least there are now three of us

    Magie

    Ps have a good rant any time, it does you good.

  • Yes, Maggie,

    We have had the exact same experience and also see the same gap in support. Alan has said they concentrate on digestion problems because there would be no one else to do this but as you and I have found there is also no one to give advice based on their experience of treatment, symptoms and remedies for our cancer if you are not having the operation.

    Specifically 3 years ago coming near the end of my first series of chemo I was worried about what happens next. The consultant was vague. I now know why but at the time it upset me. It turns out they simply do not know how much longer you will live so they are unable to plan further treatment. I went to a meeting at the Maidstone group, I put my name and address on the list of attendees but as it was specifically for pre and post operative patients they did not send me any further details. Now I will be coming up to a third line of treatment and it would be nice to talk the options over with people who have gone through this. I have specific questions about treatment for our cancer which will have different answers from other cancers so general support groups are no use. Answers such as leave it up your consultant are maddening. How can you have a meaningful discussion with them if you have not got any knowledge of what has and has not worked for others? Also our cancer is not that common and quite deadly they don't have that much experience of stage 4 survivors so you need to be able to discuss your treatment with them.

    John

  • John,

    I have messaged Alan with my comments and a few ideas for possibly using CC as a forum for those facing either a terminal diagnosis, reoccurrence or inoperable OC. as an alternative. I had never really thought about the reluctance to voice the concerns we have as apposed to those facing surgery probably as I struggle just to get through the day sometimes:-) Im glad you have bought this subject into the light. I wish you well with your scan, I have mine in May. Short fingernails! If you want to message me please do so.

    Best wishes,

    Charlie

  • Charlie,

    As I said I have had my little rant and got over it. If the majority of sufferers are to be pushed somewhere out of sight I am not too bothered. It is just a shame that as we tend to die off so quickly our needs seem not be as important.

    John

  • I would hate people to be considered "pushed off out of sight" John and personally would be happy to have open discussion on this site but I am just a general user and have no ties with the OPA other than I contacted them 3 years ago after my op and they sent me info and booklets. I admire the support the OPA offers patients but agree that everyone should receive support. I hadn't looked at their website for ages and in fact its a completely new one to 3 years ago. This whole venture seems to be run under the umbrella of Health Unlocked and if you click on the green menu bar you can see all the other communities that operate under their banner. Some people with more than one condition belong to more than one community. CC was envisaged as simply another community under the Health Unlocked banner as per the others as far as I understand.

    Best wishes

    Charlie

  • Just joining the blog and adding my 3pennyworth. Yes I support the view that support groups should cater for all. For the individual joining it is their decision if they can accept and fit in with people with a different prognosis, for those in the group they usually are happy to offer what advice they can, although there is aways the problem of dealing with outlook. However usually things are better when brought out in the open.

    The ideas around using Charlies Circle as a viehicle for palative etc seems very sensible and a good way of extending it.

    Good to see this site so helpful

    Phil & Pat

  • Just a few personal thoughts and background to this.

    The OPA was set up to plug the gap in knowledge of post operative side effects, with patients helping professionals understand the problems we encounter. It has been careful not to conflict with existing roles such as Macmillan and Marie Curie.

    Following a working life in community nursing dealing with terminal cancer and oesophageal cancer. I was confronted with the words " You have oesophageal cancer". Treatment radium the only option to delay the inevitable

    The oncologist said we would like you to consider an operation. Who had ever heard of an operation? Nobody.

    GP's,nurses, colleagues opened and shut their mouths, silently said goodbye and outwardly said we are all here to support you, watched and waited. I went back to work, how could this be achieved?

    A surgeon was prepared to operate it would mean eating small meals more often that was all that was known then, how wrong was that to be. Many years later he said he had hoped to give me 3 more years.

    It was1994 no centres of excellence, no stageing ,no specialist nurses, no chemotherapy available, no knowledge of side effects.I was on my own.

    It was 2 years later before I heard and spoke to David Kirby. David set up the opa in his own home after his operation specifically to highlight post operative problems, something he has worked for ever since.Over the years surgeons, healthcare professionals have listened to discussions and gained knowledge about our new altered lifestyles. Most of the work is done on a voluntary basis with just 2 people employed in what is a very intense,sensitive, and busy job.

    Sometime ago I was asked to visit a lady having palliative care,her request was to come with me to london to meet other cancer patients. At her funeral her mother told me how much that visit had meant to her. No one is excluded.

    The journey we are all on is not an easy one and everbody is welcome at the meetings. Support is not only about patients but also for the carers who have a very difficult road to travel

    I apologise if this is mostly about me but hopefully more people will, be encouraged into Charlies Circle. As she says distance,travelling and circumstances make meetings difficult,so with the help of technology support may grow.

    Best wishes to all

    Sally

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