Thanks to those of you that gave me advise on stoma, cyst surgery and pacitaxel. It has been incredibly helpful.. A pity I didn't know about you sooner..
Now related to that when I saw the registrar last Wednesday and when he told me that they would put me on pacitaxel I had to sign a form again. It actually made me very angry as the registrar pointed it out.
So The patient agreement to chemotherapy at the top states. The intended benefits:
[ ] To prevent recurrence and/or give the best possible chance of being cured
[ ] to control or palliate the disease. To keep you as well as possible, for as long as possible.
In my case the second one was ticked. And in hindsight, only with your first chemo the first one was ticked.
Of course the poor registrar can't do anything about this, but I told him it is very demoralising to being told you have no hope in hell and are just given up ... With my first cancer, multiple myeloma, they don't talk about that. Not really the right attitude for a medical team. Would they do the utmost to get you the best chemo or treatment? When I was diagnosed with multiple myeloma the prognosis was 3 years, that was in 2008. I am still alive and stable - albeit keeping the myeloma at bay with curcumin.
It seems that many of you ladies have been diagnosed quite a few years ago and are still alive and fighting your illness as good as you can.
Now the oncology teams should change their attitude. I have found that a lot of patients are very distraught at being told there is no hope. I am now down to my third chemo in a very short time (a bit more than a year) , but nothing new as the same happened with multiple myeloma. Others might be so distraught that it affects their chances of controlling the illness and just give up. That is not right!
Sorry ladies, I don't often explode but I was/and still am absolutely furious to say the least... and letting off steam helps and of course we should change the attitude of the medical profession. Or show hospitals where teams are better and exemplary..
Dieneke
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dieneke
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Oh dear... yes I have come across the use of that word palliative before and freaked out.
In general I think the medical terminology hasn’t kept up with the way cancer is treated and patients live with it. I suppose that’s good for us because we do expect/ hope to live longer with cancer now. Perhaps we should talk about treatment for ‘chronic cancer’ rather than palliative chemo. It’s great that we patients get to read our notes and make informed choices but the medical profession need to get with the program! Love to you xx
Hi lovely I like you am on 3rd line chemo in 18months and my team at the Christie told me they can’t cure my cancer but they can manage it well and to look at it as a chronic illness and even though I’m on 3rd line they have said there is still a lot more they can throw at it . Not once have I been told there’s no hope.
I think the word palliative evokes feelings of hopelessness but if you actually look at the definition, that is far from the truth and maybe patients need educating regarding palliative care so it’s not such a frightening concept.
This is quite a good explanation of palliative care today if you want to take a look
It seems like you have a good hospital. That is how it should be. Also good to read the definition of palliative care - absolutely true and yes it makes it normal and not frightening any more.
Thanks for sharing that
Dieneke x
I also freaked out at my last checkup when a palliative care nurse joined my meeting with my oncologist..........you know what its like when you have a check up looming you worry your self sick about a recurrence, her appearance did not help to calm me! I spoke to my CNS nurse later that week and voiced my displeasure, she said "palliative care" doesn't mean end of life the way it used to, apparently she was there as a "symptoms" nurse. I suggested that a different job title would resolve confusion issues and relieve patients anxiety.
I can understand how you feel, Dieneke. When my first recurrence was confirmed I received a copy of the clinic letter to my GP and it stated that my cancer was now 'incurable.' I felt so miserable and depressed for a long time afterwards.
I think more could to be done to help patients understand that 'palliative' care is about managing symptoms and keep us living our lives for as long as possible. My hospital actually calls the "Palliative Care Team" the "Symptom Control Team" - makes them seem far less scary, doesn't it?!
Different name is a good idea, still would need to get use to the term symptom control team!
There is a fantastic pod cast from You Me and the Big C about Palliative care and it really does change your perspective on the word which is in itself very scary.
♥
I agree that the form is not helpful but for me I needed something written down that said ‘you can not be cured’.
It allowed me to say the words to my family and friends and to rebuff the ‘well you never know’, ‘your so positive’ chat which I just find so unhelpful and wastes time and actually is for their comfort not mine.
♥
That’s just my view, 3 years down the line i don’t feel that I’m going anywhere any time soon, I hope to blast 💥 the stats out of the water! 😀
Hello, with a chronic illness you are still ill, you will never get rid of the disease or be cured but the disease may be controlled with medication, chemo for example.
The reason they talk about Ovarian Cancer in those terms is we can live with the disease for years controlled with drugs.
I'd just like to say I agree with you completely about rebuffing all the 'no, surely not, you look far too well' and 'oh, you'll be fine I'm sure' and 'don't be morbid' if I dare to mention the word terminal... its bad enough having it, never mind having to cope with other people's feelings of denial... quite useful to have it in black and white on a bit of paper...!
It is not just the oncologists with this attitude: I was sent to see a lung specialist because of suspected pneumonitis due to the cancer drug that I am on and her report said “ it is incongruous that she is worried about long term steroid use when she is realistic about her prognosis”. I am still fuming.
When I started my first chemo in November 2013, the oncologist overseeing it asked me to sign a form to say I understood all treatment for me was palliative not curative. He explained it didn't mean I was dying, but treatment wouldn't cure me, though they naturally hoped the chemo would shrink the beast. Five and a half years later, I've had more chemo, another op, & hormone blockers, but I'm still here, taking Letrozole to keep the aliens currently inside stable for as long as possible, & feeling quite well. Like Lias 66, I don't feel I'm going anywhere any time soon.
Another dr on the oncology team suggested at one appointment that they were treating my cancer as a chronic illness, which I suppose it is. I was first diagnosed over 11 years ago, & it's felt rather like a roller coaster at times, but I'm still here!!! Di
Good point Dieneke. Maybe if there is a suggestion box of sorts (!) you can drop in a strongly worded one how discouraging that sounds (the "ticked" box). The day I walked into my oncologist's office for the first time she said they treat OC like they d type 1 diabetes. If it comes back, they try something else. Of course I thought I would be the cured one...but that has proven to be wrong...I still have plenty of hope while dealing with my 2nd recurrence. Here's to you! oxox Judy
Dear Dieneke, yes of course you would be furious ! I agree its cruel and unnecessary to give out opinions like that stripping the patient of the hope and positive beliefs which keep us all at the front line...
Without the hope that we can do our utmost to promote the life we love , even if its at risk a lot of the time, Im sure we would not be doing as well as we are...
Im going to talk to a friend who is in charge of psychology at a local hospital and ask what
is being done about this sort of ethos, of stating what they assume is correct (but of course may not be !) . Im delighted to read you are taking cucurmin (sp) which I also take daily
along with Vit D, Biotin, Vit C, calcium , as I believe its helping me as well as having a healthy diet. (After chemo Im now on Letrozole with several side effects but not the
death defying ones I had on FEC and Taxol..!!)
Currently I have a little project going to keep my brain from seizing up : Ive had some sweat shirts and t shirts printed with catching assertive messages to cancer , (E G "FEC off Cancer") . and Im going to see if anyone locally will buy them to raise money for cancer research on which our lives ultimately will depend, and those of our daughters.
I had some good news yesterday that my MRI scan on neck and head did not show any tumours , which have been causing headaches, so t least in that area I have one less
worry.
Have as good a day as you possibly can , Dieneke , where ever in UK you are..
Hello Denise, thanks for your thoughts. Good idea to see what your friend says. Terminology should be reviewed at times - like the terminology for the less able, or those with disability,,,
Congratulations on your MRI good news. That is what we need, we should feel good about ourselves and what we achieve..
Good you are taking curcumin with other supplements... I am still trying to find out what is best.
IN the book by Jane McLelland called How to Starve Cancer she talks about the Care Oncology clinic in Harley Street which looks at complementary approaches including diet and supplements. It is worth reading the book and the clinic uses the same protocols. I am already using the low dose aspirin which attacks cancer cells with my NHS oncologist's approval.
I feel somewhat differently about this I'm afraid. The word 'palliative' scares many people, but 'palliative' does not necessarily mean your demise is imminent, it simply means they know they can't cure you, so any treatments they offer will be to try to extend your life as far as possible and hold the cancer back. The truth is, with ovarian cancer particularly, other than very early stage ones, the likelihood is that any treatments offered will be technically palliative, as I've defined its meaning above. Also true with pancreatic and often esophogeal cancers...
My particular hospital never mentioned 'palliative' to me until I mentioned it; to be fair, at Stage 4b, it seemed glaringly obvious to me that any treatment offered would be merely palliative. But a year ago, I was really cross to find out that my fears about receiving heavy duty chemo for 4 and a half months and the fear of how I would manage the more serious side effects living alone could have been allayed if they had only been prepared to use that word, because it turns out the local Palliative Care Service will support you and come out to you if you have problems while receiving treatment. I can only conclude they didn't mention that to me because of that word 'palliative', because when I quizzed the Macmillan nurse and the oncologist as to why they didn't mention it, they slid away from the question and didn't really answer. Given the way the word is currently perceived (palliative equals dead) I do understand that many people with cancer prefer to be convinced that they will beat their cancer. Some do, many don't, but the facts are, we are all technically dying from the moment we are born, the risk is always there and always has been - life itself is a terminal condition and we've all known that all our lives; its the price of human conscious awareness and being alive.
I would prefer the term 'palliative' to be more commonly used and viewed differently; it does not mean you're about to die, it simply means that what you've got they can't cure, and you may carry on living with your ultimately terminal disease for many years to come. In other words, let's start looking at some forms of cancer as chronic, ongoing disease that can be managed, rather than an acute, emergency situation that can be solved by the medics, in the same way that people do with MS, Alzheimer's, Parkinson's, Motor Neurone, and a host of other conditions.
yes indeed chronic cancer is much better, There is still then the question of what is a cure! With multiple myeloma I am stable since about 2011, so 8 years, but not cured?
The term 'cure' is surely something not often said by a doctor in relation to cancer - mostly the max you'll get is NED - no evidence of disease. I find it interesting that the word 'cure' is never used by oncologists when talking about ovarian cancer treatments, possibly/probably never used in some other cancers either. There are one or two cancers which can be cured with chemotherapy, but OC is not one of them, other than maybe early stage ones. And generally, I'm guessing they know, as well as I do, that cancer cells are constantly forming in our bodies down the years - if they ever anchor themselves somewhere and grow is the only time they see a patient with cancer - and how can they say anyone is ever really 'cured', in light of that... But there are people who survive and their cancer has disappeared, with or without conventional treatment, commonly known as 'radical remission', though I'm willing to bet the medics still don't say 'cured'...
I think they know they don't really know everything about cancer - my senior oncologist told me they had people who left the hospital with a poor prognosis who were still alive and kicking ten years later, and others who left with a good prognosis who didn't last longer than six months - and they have no idea why. So are they ever going to say 'cured'? .. I think not,unless and until someone comes up with a definitive cure.
Well, we're all different - I prefer the bluntness of the form for your OC treatment - at least its clear! And I still think 'palliative' should have a broader definition than just easing your path out of the world, because that's not the only thing it means these days ... but perhaps 'management' or 'managed' might be easier to hear...
Personally, I would prefer it if the term Symptom Control was used, if only to stop my family freaking out when hearing I am going to see the Palliative Care team at my local hospice. It's probably easier to change the name of the teams then re-educate the public.
I love this definition of Palliative Care: A Cloak of Comfort. ''Palliative” is from the Latin word pallium, which means cloak. When patients receive palliative care, they are cloaked with care and comfort as they receive highly focused pain and symptom management.
I agree that it would be easier to change the name rather than educate the public but this definitiion really took the fear out of the word for me.
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