A Sense of Despair

[Sailor]

Right now I am sitting here feeling a sense of despair. Not about myself, I’m upbeat about that, but about the system that we as patients suffer from. My sense of despair comes from a lot of what I read in these pages, and it is not the individual stories of tremendously brave and resourceful people. No it comes from what they are not being told, the information they are not getting. Yet there has been a huge amount of effort put in at all levels from government, cancer prganisations, medical groups and consumer groups to correct this. The Cancer Councils do a great job - they publish all these resources for patients; they collect and hand on resources from other organizations; they run the cancer helpine 13 11 02; they manage all those wonderful volunteers who agree to counsel newly diagnosed people through Cancer Connect; and they maintain this site. There are the medical organizations like the Clinical Oncology Society of Australia, there are the specific patient groups like the Prostate Cancer Foundation, or the Breast Cancer Network, all providing superb information and resources to help those affected by this dreadful disease. Yet it is obvious from so many of your stories that no-one in the medical system is telling patients and their families about these resources, services available, information about your cancer, side effects of treatment or what is available to help you to have a good quality life. Instead we get people being told that pain is in their mind, not real, we get the stories of the rush to surgery that may be inappropriate, the lack of support from the system, the lack of awareness of what is best practice treatment. People affected by cancer should not have to hunt this information out, they should be told it, it should be presented to them in a form that they can take away and think about, they should receive best practice treatment from the start and that includes all the necessary information. Do you wonder that sometimes I despair? How much longer do we have to put up with this? Sailor 23/6/10 The consequences of poor cartography could be dire. During the Napoleonic Wars, British losses by shipwreck, caused by bad charts as well as bad weather, were eight times as great as those inflicted by the enemy. Wilford

[Jules2]

Hi Sailor Funny you should write this as i have been talking to people about this for a while now. I think in some cases we arent told adequate information and at other times we are given a virtual overload of information in the written form. I remember returning from perth with a miriad of booklets that i was supposed to read. All the while being on heavvy doses of morphine aswell as chemo. Often at a time when we are less able to absorb the information due to drugs or in shock from diagnosis. I think the solution is to have one person who is assigned to the cancer patient right from diagnosis and through treatment and beyond. Of course the person would have to be trained in all facets involved with dealing with cancer patients. For example depression, if that was picked up earlier and monitored it would save a heck of a lot of people a lot of sadness and incredibly difficult times. In some cases early detection or monitoring would also enable some people to continue their treatment uninterrupted. There is a lot of support and information out there but boy is it fragmented and difficult to track down. Of course i am just speaking from my experience and those i have spoken to. Plus i am sure things are different (goodness knows why) in different states. Something really needs to be done about this issue and hopefully that wont be in the distant future. Julie

[#3]

I agree wholeheartedly, Sailor. A cancer diagnosis launches many of us into a world of the unknown. Questions abound in a confused mind still wrestling with the concept of cancer, that combined with fear make it difficult to research information. You ask yourself …Am I making the right decision about surgery and treatment? In my case, I was referred to a specialist I had never heard of before. My life was in their hands, I wanted to know about this person… their surgical capabilities for one, before I made my decision. I told my doctor this, she became impatient with me! I believe I had every right to ask questions before deciding about something so important. I did my research on the specialist, asked questions and then made my decision. More information about the pitfalls encountered after treatment finishes, needs to be provided. Until I joined this website I didn’t realise that others struggled after treatment ended. It was reassuring to know that others had similar responses. If I had been aware of this beforehand it would have saved me from many months of feeling isolated. So..yes Sailor, information is the answer! Reindeer

[samex]

I couldn't agree more. My physical treatment was beyond reproach. My onc answered all questions and is a very patient and understanding man. My GP was also understanding and considerate during and has been after treatment. The nurses were great at the oncology clinic BUT I never knew about little things like "Look well feel better' days. I was well informed of the physical effects but the psychological effects were NEVER mentioned. I just thought that I was a wuss for so long and that if I could survive chemo then what was feeling a little bit sad all about? My post treatment struggle has been enormous and I didn't know where to even start until I found the support here. And I only found this site by chance - googling out of desperation. The nurses are so stretched for time and physical and emotional energy that it is no wonder that they have difficulty dealing with the issues other than our physical weel being. Is it the perennial funding issue that there aren't enough bodies to go around to inform people of what is available? The experience can be such a lonely one. S

[Jules2]

Hey S My experience was the same in that my clinical care was exceptional and yet nothing provided for the social / emotional side of things. It is my belief that cancer nurses are trained very well in the clinical side of things and i wonder if it would be appropriate for them to be trained in depression. Depression is very misunderstood in society in general, neverlone combined with a cancer diagnosis. I am not sure it is down to the dollar or whether someone just hasnt spoken up about it, which i find astonishing really. Cancer and depression often go hand in hand, its not abnormal and i would say we all go through it in varying degrees. As sailor has said there is help out there but its a matter of "knowing" before we can access it. It is my belief that cancer treatment and provision of services is just way too fragmented and absolutle huge gaps in service provision. I think the gaps exist due to lack of money but also who gets to see the whole picture? Cos i am sure that cancer patients do not. At our new local cancer centre i have been able to be a small voice in what is going to be provided. I am pushing for them to provide counselling to country patients who will be staying away from home. This would encompass offering the person a shoulder to lean on if needed and also helping with shopping, chemists, banking, internet assistance or anything else the patient needs. Bit mind blank at the mmoment, wrong end of the day for me as i get tired still. I am hoping they will take it on board even if it starts out in a small way and builds from there. One can only hope!! Julie

[harker]

One thing we can do is write about it, like Sailor has done. We know the stories are powerful and if we direct our writing abilities to the task I think we can make a difference to how the health industry views many aspects of the cancer experience. It just needs someone to take it on as a project, I reckon. There are many 'telling the story' publications, but not many (to my knowledge) with a focus on highlighting how the system can be improved. It's advocacy, yes, but coming from a very focused narrative direction. What do others think? H

[Jules2]

H I think that a voice via any means is great! If everyone speaks out a little it will all add up to a lot and we can make the road a little bit smoother and easier for someone else. I think it needs all the powers to be that deal with cancer to get together and listen to what patients and caregivers have to say and then try and bridge the gaps. I think they first need to ask the question "what would have made your journey easier?". This needs to be asked of many and then pull out what they can and work towards making this experience easier. I say many because country cancer patients have a different set of difficulties as opposed to city ones. That was just off the top of my head! I guess you get my drift though. :) Julie

[samex]

Harker, I think that is a wonderful idea but where would we start? I know that the writing has helped me enormously to tangibly reconstruct the confusion of thoughts and ideas and allowed me to organise them in some way. Do you envisage that the writing would be along the lines of the expressive writers' group or more of a collection of narratives outlining our own peculiar experiences and the difficulties we as individuals experience/d? This could be a powerful form of advocacy. SAmex

[harker]

I think that "a collection of narratives outlining our own peculiar experiences and the difficulties we as individuals experience/d" is putting it rather well, Samex. We're chatted before about the importance of 'show, don't tell' and I think there is a very goood case for that principle being applied to a set of stories that will show the health indistry how a lot of this looks from our side. I don't want to read a book of whinges (we should get that out of our systems here - as often as we want to) and I imagine health professionals won't want to read all about that. But it's not all about having a whinge, is it? I'd like to see some of the depth of experience communicated to the health industry in an honest but constructed manner. What do others think? H

[samex]

Narrative is an extremely powerful tool. I agree Harker, that a bunch of whingers would get nowhere but a series of stories may enlighten people to the "unseen" problems that cancer patients face. This would perhaps open up the enormous range of issues that are faced by individuals. Each of us has a different focus but there is such a similarity in our stories in that at some point the system has let us down to some degree. Perhaps that is too strong, but to take Kate's words from another discussion, to some extent we have all had a time when we have felt "set adrift". I feel that there is potential in this but wouldn't know where to start. S PS Sailor, have you started something here?

[Sailor]

Hi Everybody Brilliant suggestion Harker. Our stories are the most powerful thing that we have. The best way to use them is to illustrate what we see as the necessary improvements to the system. How about we use them to illustrate an aspect that we think needs improving, but do it in a powerful way. For example, Harker has already used the difficulties of coping with all those bills in his award winning "A spiral Staircase Going Nowhere" - now why couldn't those bills have gone straight to the health insurance company rather than via Harker? Or Jules, some of your experience of being treated at a distance. Cheers Sailor No literature is richer than that of the sea. no story is more enthralling, no tradition is more secure. Felix Riesenberg

[Jules2]

I am in it ... maybe i could just type up what i have said in the video i did in conjunction with the hospital. hehe Cheating i guess! @ Samex ... i dont see it as whinging even if we do mention things that we found difficult or that we feel can be changed. If we do speak out then just think how much easier it will be for the people that follow in our footsteps. It is a hard enough road and as someone said to me recently it is akin to living on death row once you get diagnosed with cancer. I have had some input into the new cancer centre that is opening next year, which is great as they are things that the 'powers to be' had not thought of. @ H ... this is going to have a double bonus here. It will be cathartic to us and also if something happens to fix the system then it kind of puts a purpose to what we have been through. Least that is how it seems to me. Also if it helps fix the system, then thats going to be way yayyyy indeed! Next thing is how? When and where? 😄 Julie

[samex]

Julie, How were you involved in the cancer centre?(You've probably mentioned it before and I've forgotten) Which one is it? Re - narratives. I just read a collection of essays that were published by amateur writers based on the theme of "Flags" (not related to Harker's idea at all but just an example). I really have no idea how it was published or how the stories were submitted, but I may be able to find out. I think that this idea has an enormous amount of merit but I really have no idea where to go from here. We actually have so many narratives already written that just need editing and tweeking. I know thay do an awful lot already but could the CAncer Council have some role in this? Some more thoughts. S

[Jules2]

@S It is the new cancer centre near me that is opening next year i think. I just had a meeting with one of the organisers, so nothing formal really. He did take on board quite a few points that i made though ... so here's hoping they incorporate them. One thing that wasnt received terribly well is to provide some sort of counselling or pastoral care to the people from the country who will stay at the centre. I havent given up on that one though and will mention it again. :) I am sure we do have a lot on site to use. I guess you would need permission to use it? Or would we need to write something specifically for this purpose? Not sure re the cc's involvement ... am sure sailor could answer this one. It's great to see you writing so differently these days, S!!! Well done you! Julie

[#15]

It’s great the new centre is open to ideas, Jules. Disappointing that your suggestion about counselling or pastoral care was not received well. I believe a healthy mind is just as important as a healthy body. Treatment should incorporate both mind and body. How many of us went through depression as a result of a cancer diagnosis, a very high number I suspect. A combined writing piece is a wonderful idea . Our experiences are in many ways similar but also varied in the area of treatments. Combined knowledge and ideas could highlight areas that require a “re-think”. Reindeer

[Sailor]

Hi everyone All of you have made some suggestions as to what we could do - the how is a bit more difficult. Could I suggest that as everyone who has responded is a member of the Expressive Writing Group, that we use the Forum pages of that group to post out thoughts. The Forum associated with that group was discovered by Harker and my understanding is that a Forum has a thread of conversation, not just posts and replies. Those who have been following the dialogue - ( should that be polylogue?) and who want to be part of the writing can apply to join the group. Cheers Sailor No literature is richer than that of the sea. no story is more enthralling, no tradition is more secure. Felix Riesenberg

[Jules2]

Hi Reindeer I think the new centre will undertake counselling. They werent totally anti it per se, however, they wanted to leave that up to the manager when they were appointed. I asked that they didnt leave it up to a manager and that i guess they would mandate it as just part of the service. I think they will take it on board as there are others that know the benefits of pastoral care and counselling. 🙂 Will certainly be interesting ... fingers crossed for a great outcome. I agree that a lot of people and i would actually think everyone that is diagnosed goes through a depressed state at some stage. Always exceptions to the rule though. Problem is for country patients is that they are away from their networks and there currently doesnt seem to be anything in place to help them fill the gap. Now i have to join the expressive writing group it seems. Pretty lol for me cos i am soooooooooo hopeless at expressive writing. 😄 Good to hear from you, Reindeer Julie xo

[Jules2]

My application to join has been registered. 🙂

[deejjay]

Jules the idea of someone being assigned to the patient is the way to go. Some breast cancer patients have a breast care nurse who plays that role. That person is like a case manager and makes sure that everything is discussed and explained, information given about support groups and events such as look good feel better and generally acts as someone to go to for anything and can act as a referral to other services ie psychologist, social worker etc. Thus I think that's what all cancer patients should have is a care nurse or case manager who is knowledgable about the type of cancer and treatment.

[#20]

It sounds like a plan, Stan, I mean Sailor. Good information, plus a clear mind, plus a sense of purpose, gives you the gut feeling that your decisions are the best you can make. All the ingredients must be there, especially the knowledge that you have all the information, the best available information. As you say Sailor “it comes from what they are not being told, the information they are not getting”. It’s the they that I have a problem with. There is no ‘steering committee’, nor will there ever be one while human nature is in charge. It’s all about empires. But the information is there, no-one is hoarding it, it’s just spread all over the place. Every newly ‘diagnosed’ soul has to randomly piece together his particular picture puzzle, and assemble his/her resources as best he/she can. This takes time, and time is generally against us, and bad decisions can be, and are made. It’s not a great time to have to learn by your mistakes. This important conversation started on June 23 and last commented on July 3. Pull me up if this conversation was moved somewhere that I haven’t yet come across, but I’m going to say we have the perfect opportunity, ‘write’ here, on this web site to become a clearing house for useful information. Felix has given us all the tools. Private Groups, to hatch our plans, a you-beaut Search Engine to use to search out all this information scattered through this web-site, Forums, topics, you name it’s all here. Within an hour of me first entering this website, I chanced on a thread that just in conversation had commented on free Dental treatment. I new nothing of this, and as it happened it coincided with emergency treatment I had booked of which I was not looking forward to the bill. I paid for the emergency, but I had the follow up treatment on Medicare. Thank you Sailor. Try our Search Engine for dental and it comes up with 8 listings one of them mine, which I attached a link to the medicare website via my Blog. It also gives you in an insight into just how many of us have dental problems and questions about it, with only one specific answer. They just sit there until you search for them. What do you do with them when you find these answers? You make a Forum Topic called “Frequently Asked Questions”. Once it starts we each add to the growing list. Ideally not a place for chit-chat, but likely to drift off as they seem to do. But it becomes a one-stop resource that can be tidied up from time to time, to remove the verbiage and stick to the facts, and make it more succinct. Like a mini-wikipedia, only without the ability to edit each addition. That is maybe where Felix could help, where some volunteers could act as cleaner-uppers with facilitated editing rights. Could work? Would need Felix. Even if that’s too hard, a sort of meandering, personalized, one-stop FAQ would still be better than nothing. As well as emoticons  , we would all have to learn how to use links 😎 to take us to authored information sites on the web. They are what make information useful rather than just time wasting hearsay. The difference between “….I heard you can get dental treatment somewhere…..” and thanks to Sailor on the 26/3/2010 http://www.medicareaustralia.gov.au/provider/medicare/initiatives/teen-dental.jsp and my contribution on 3/9/2010 on my Blog to the same site: http://www.cancerconnections.com.au/blog/my-bad-hair-day, just in case someone was listening that had missed Sailor’s contribution. The Dental link was appropriately placed under Home>Forum>Lounge>General Discussion>DENTAL. A FAQ could be located Home>Forum>Cancer Journey>FAQ, slotted in between Complementary Therapies and Practical Issues. Practical Issues might be a good home except the wording “Share your experiences” http://www.cancerconnections.com.au/forum would be more in line with FAQ if it was ‘share you facts with links’. That might do it. Perhaps that is what Felix had in mind with Practical Issues. Maybe I should ask him, should I get a few comments from you folks, that this suggestion might be a good way to get our INFORMATION published in one place. Whaddyathink? The system works, we just have to make it work for us, and our quest for information. While I’m on the subject I found a great Website this afternoon on Cancer the insidious explained, for the intelligent layman. Here it is, completely useless tucked away here on Sailors Blog under A Sense of Despair. What cancer is. Try it. http://www.cancerhelp.org.uk/about-cancer/what-is-cancer/index.htm Oh, and check out my posting on diet at In quest of a more natural diet http://www.cancerconnections.com.au/content/quest-more-natural-diet