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Lynda Bellingham is dying.

Discussion in 'Serious' started by Kronos, 28 Sep 2014.

  1. Kronos

    Kronos Well-Known Member

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    Lynda, of Oxo advert ad a few years ago though of course she has done other stuff. She has made the decision to stop treatment for colon cancer and spend one last Christmas at home.

    http://www.dailymail.co.uk/news/art...ham-reveals-story-14-month-cancer-battle.html

    As a person that has been treated for cancer and suffered horrendous side effects I can sympathise with her decision to choose death rather than prolong the unpleasantness. I will not be treated again and judging by a discussion on a group Facebook page I am a member of. My decision is not uncommon.

    We hear a lot of bulls*** spoken about battling cancer, you don't battle cancer you survive the treatment which can be prolonged, painful and certainly unpleasant and if you are unfortunate to live in a health board area where targets are more important than a patients quality of life then you are in deep do do.

    So good luck Linda and may your last few months be as comfortable as possible and thanks for sharing your story.
     
  2. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    Depending on diagnosis, cancer treatment can be effective, but it is also brutal, and there are always huge losses and sacrifices. Health professionals and the public alike often forget that. And there are never guarantees that it won't come back.

    People are scared of cancer, so they want to believe that something can be done --and sometimes they want to believe that the magic cure already exists, whether in prayer, homeopathy or natural foods; or in common and safe medicines that Big Pharma suppresses knowledge of so it can continue exploiting desperate cancer patients (because those who work for Big Pharma and their families of course never get cancer themselves).

    For the same reason people need to cast those who get cancer in the role of 'cancer heroes' --people who bravely battle their disease-- or 'cancer victims' --tragic sufferers who need to be helped. Because they need inspiring examples in case they ever get cancer themselves, and they need to feel that if it ever happens to them, others will help them in turn. It's how we work: when we save others, we also save ourselves.

    Occasionally they become 'cancer villains': accused of having done something to invite this curse upon themselves (lung cancer patients get this a lot). Again: we don't want to feel that cancer is something that can just happen to anyone, at any time for no reason at all, and that we have no control over it whatsoever.

    Of course people with cancer are just people who happen to have the misfortune to have cancer. The best way to support them is to recognise that. Cancer steals everything: your health, your body, your future, your independence and control, your dignity, your life as you knew it, and also, your identity. To remain true to yourself in life and in death is the hardest thing to do.

    Here's to Lynda Bellingham; may she remain true to herself.
     
  3. 13eightyfour

    13eightyfour Formerly Titanium Angel

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    Having recently had my Father diagnosed with lung cancer, and going through all the meetings/consultations with him, I completely understand and admire her decision.

    The Doctors can't do anything for my Dad except palliative chemotherapy, nobody really has any idea how long he has, or if the chemo will help in anyway, but I felt before he decided whether take it or not, he should know that whatever he decided should be his decision.
    The family was split into 2 camps, those that said he had to take it and would be stupid if he didn't (his brothers/sisters) and my sister and I who were firmly in the 'If you do or don't take it we'll still be there' camp.

    The way I see it? Make the most of the time you have!
     
  4. adidan

    adidan Guesswork is still work

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    The truth is much more could be done but doctors have their hands tied, we're still employing very outdated practices purely for the fact that if anything else is tried then doctors can face litigation.

    I know if nothing worked for me then I'd be more than happy to try something innovative, even if it just meant adding to the overall knowledge of the subject for others to benefit from.

    It's not nice to see someone die of cancer, thankfully my dad didn't suffer for too long.

    Edit: 13eightyfour, I feel for you mate - my dad had a similar diagnosis but was around quite a long while after initial diagnosis and was only in a really bad way for a short time. Make the most of it, I guess we all should anyway. Strength to you and yours fellow yellow belly.
     
  5. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    Not so in the UK, where many cancer patients are on some experimental trial or another. But it is complicated. First, you have to weigh the known treatment with some probability of effectiveness against the experimental treatment with unknown probability of effectiveness --which means that you only enlist patients for who there is absolutely no other hope.

    This is a problem in itself. An experimental treatment that might potentially be a huge improvement on existing treatments in terms of effectiveness and reduced side-effects may not appear very effective at all when trialled solely on patients that are in terminal stages of untreatable disease, while it could have offered significant improvements for patients at earlier, more treatable stages of the disease. It's effectiveness may be hidden by the severity of the experimental patient group, and therefore be overlooked.

    Then, in order to make valid comparisons with existing treatments, you need to pick your trial patients carefully --exclude those who are so unwell that any treatment is likely to just kill them outright, for instance. Then you need to weigh up the probability of the experimental treatment hastening a patient's demise rather than preventing it, or slowing it down.

    Then you need to find clinical staff prepared to experiment on the patient. No clinician likes to be complicit in killing a patient --whether accidentally or while knowlingly taking such risks. I see how it affects them when a patient dies as a consequence of a treatment that they administered (e.g. as a result of anaphylactic shock, which is a known risk but you can never predict) --it is pretty traumatising for them.

    Basically, you cannot just throw horrendously unpleasant and highly dangerous treatments at patients and see what sticks, just because they are dying anyway. Ethics apply even to patients who are dying. I would say especially to those who are dying.
     
  6. faugusztin

    faugusztin I *am* the guy with two left hands

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    For now we don't have anything better than chemotherapy. I guess for you using penicillin is "outdated practice" too.

    If it wasn't for many rounds of tests and then approval, then i guess we would have bunch of people with hypertension treated with Sildenafil walking around with their manhood standing (Sildenafil=Viagra). Same testing and approval is needed for cancer treatment too, you can't just invent and instantly use any drug you come up with. What if the side effects includes death ? How effective is then the drug ? "Oh, we cured your cancer, but you will die due the drug shutting down your lungs. But cancer is cured!".
     
  7. Kronos

    Kronos Well-Known Member

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    Do not want to harp on about my experiences but that is pretty much what they do to cancer patients. The chemo drug, Cisplatin, which I had was/is an incredibly dangerous drug with some very unpleasant side effects, OK not all side effects are a given but in my case very few, in fact none, were actually mentioned to me. http://www.drugs.com/sfx/cisplatin-side-effects.html
    It was only because I have a very good GP practice that I became aware of what I was suffering from some time after treatment had ceased that these were in fact side effects.

    I think we are all aware of the dangerous effects of radiation which makes no distinction between good cells and cancerous ones.

    It is or at least should be, be about quality of life, but in our target driven health service this is sadly overlooked, at least it is in my health area. I must admit I have experienced far better attitudes in two other areas, one in England and the other in another part of Scotland.

    We really need to stop the target driven service so beloved by politicians and get back to the idea that the patient should always come first.
     
  8. adidan

    adidan Guesswork is still work

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    I don't disagree but I believe it is the patient's choice. I know from watching my dad that chemo is hardly a walk in the park either and yet that was a choice he made.

    We don't have anything better as nobody can tell me that since its inception there hasn't been a stifling, to a lesser or greater extent, of other possible treatments.

    I'm sorry, I thought better of you, that really is strolling into trolling territory when you make baseless, ridiculous, assumptions.
     
  9. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    ^^^ Exactly. Some cancer treatments turn out to have severe side-effects or adverse consequences that may only be revealed decades down the line --which turns out to be a real issue in the treatment of cancer in children and young people. A few can increase cancer risk.

    Take Tamoxifen --it's a bit of a miracle drug that reduces the recurrence of breast cancer by 50% --if taken for 5 years post breast cancer treatment. However it comes with a range of unpleasant side-effects, including bringing the menopause forward --which increases risk of osteoporosis and a bunch of other health problems besides-- and sometimes crippling joint pains and fatigue. Take it for more than 5 years and it turns out to increase the risk of womb and ovarian cancer. We did not know this until some unlucky women fell victim to this.

    Another one: BRCA-1 and BRCA-2 are breast cancer genes that increase lifetime risk of breast cancer from 11% to 60% - 90%, and risk of ovarian cancer to 40% - 60%. Treatment is usually a risk-reducing (because you can never eliminate risk, natch) mastectomy and oophorectomy. You can see how this is a problem especially for younger women. What we didn't know until recently, is that it also increases the risk of pancreatic cancer. We didn't know this before because breast or ovarian cancer usually took those women first. Now we can prevent that, this other risk raises its ugly head...
     
  10. Corky42

    Corky42 Where's walle?

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    Not sure how you want to define better, but there are other treatments than just chemotherapy.
    There is immunotherapy, surgery, radiation therapy, HCT, cryotherapy, thermotherapy.
     
  11. faugusztin

    faugusztin I *am* the guy with two left hands

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    You can have your opinion, but it has nothing to do with reality. We are still only ~40 years in the real cancer cure research, and considering the "speed" of the medical tests and approvals, you usually look at least 5-10 years when the cure is in pre-approval medical trial phase.

    Look at HIV/AIDS, do you seriously believe the pharma companies wouldn't have started selling a anti-HIV pill if they would actually have invented it ?

    But i guess it is easier to say "bad pharmas want to get as much money as they can get instead of giving us that magic pill" than to face the reality.
     
  12. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    No they don't, but I can certainly understand that it can appear that way.

    Informing patients of all side-effects is tricky. First, research shows that patients retain only 20% of any consultation (and that is in low-emotional distress, casual GP consultations). In cancer consultations patients are under significant emotional stress and have to make a lot of life-changing decisions about a very complex disease and its treatment in a very short time. People will do anything to survive; for themselves, for their children, their loved ones. They may be told what to expect, but until you go through it, you really have no idea at all.

    Meanwhile the clinician has to assess how much information patients want (some people are active copers, others are avoiders), what they can understand and what they can take on board in their distress. Give them too much information about side-effects, and patients may feel overwhelmed and freak out. Give them too little, and they are ill-prepared and freak out.

    It is not fun to tell a patient that they have cancer and see their world fall apart, and then to tell them that they will need to be tortured to get better, and that there are no guarantees it will work, or won't kill them first. It's not what doctors and nurses signed up for. It is not the vision they had when they entered training. Research shows that when entering training, medical and nursing students are highly idealistic and compassionate (I also know this from talking to them). By the time that they finish training, that has dropped significantly. Medical/nursing training is harsh, and what they get exposed to brutal and vicariously traumatising. For most of us, hospital will be an unpleasant, sometimes traumatic, but hopefully relatively brief brush with a world of suffering and death that these people have to work in every day, for the next 40 years of their career. And they're expected to do something about it. Until recently clinicians were not trained in coping with any of this. I know, because I am part of the bunch of people who train them.

    It's what we've got. We are trying to develop better (e.g. the cyberknife).

    Depends on what the objective is. Do we want to cure cancer patients, or do we want to keep them as comfortable as possible while they are dying? I think that we should attempt to cure them if possible, whilst acknowledging that the cure is often almost as bad as the disease. When it becomes worse than the disease, it's time to call it a day and move to palliative care (i.e. give patients a good death). That decision making is emotionally hard for the patient and their family (especially when you have already invested so much suffering and sacrifice into trying to survive), and for the medical clinicians who have been trained for many years to save lives and cure people. That's their job. That's their reason for being.

    Yes and no. A patient cannot demand a clinician to do something that the clinician believes will harm the patient. Patients cannot demand euthanasia, for instance.

    Sorry, but that sounds stupid. You are basically suggesting that researchers and clinicians alike are complicit in suppressing cancer treatment that they believe would be (more) effective. Like they don't fear cancer, or their loved ones don't get cancer, and this is not a problem that they have a personal or moral investment in.

    When people sound stupid, it is usually because emotion gets in the way of reason. This is grief talking: we can't be powerless. There must be some way to beat this. It must be possible to do something. It's an understandable feeling; been there, done that, many times. But it doesn't change the fact that cancer is a complex collection of horrible diseases, and scientists and clinicians are doing the best that they can.
     
    Last edited: 28 Sep 2014
  13. Yadda

    Yadda Well-Known Member

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    It's terribly sad that these days it seems very few people are unaffected by cancer in one way or another. For me it was my Father. I was with him when he was given "the news" and when he was told there was nothing they could do for him. I was lucky enough to be able to put work on hold and provide the palliative care he needed at home before he died some 5 months later.

    It is encouraging that diagnosis and treatment continues to improve though, and more and more people are surviving this horrible disease.
     
  14. Kronos

    Kronos Well-Known Member

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    Whereas I agree in principle to what you say surely it is not difficult to ascertain right away what effect telling a patient that they have cancer has had. In my case I replied "**** happens" I was fully aware ,given my lifestyle and unhealthy habits that at some point I would reap the rewards so to speak. But it was the arrogance I met on asking questions that really annoyed me. I got the impression that I should without question do what the consultant oncologist said as he was the eminently trained and experienced participant in the situation and I was merely the patient. Foolishly I did not pursue my questions and the more ill I became with the treatment the less energy I had to question. Big mistake as due to errors and delays by my consultants I have been left permanently disabled, for want of a better word. Now I will not take an aspirin prescribed by a hospital doctor unless I know why and if there are any likely side effects.

    On the subject of side effects you should,without exception, be told of the common ones bot with the particular chemo and radiation this did not happen. I was left unaware that following my first chemo severe chest pains were extremely likely but were reasonably short lived, (a couple of hours), I was rushed to A&E when it happened to me as I though I was dying. I spent three months shivering until I learnt via a FB group that thyroid damage from radiation to the tonsil area can cause permanent damage. I could go on.

    Following my formal complaint and pressure from a small group I set up information in a booklet form is now available and whereas it cannot cover every possible side effect it does try to list the most common. People as you say may well prefer to avoid knowing to much about their condition and it's treatment preferring to rely on the consultants but the information is now there for those that do want it.
     
  15. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    It is a rule of thumb in clinical psychology usually not to see a patient right after they have been broken the bad news, because it is too early for us --and for the patient-- to know how this will really affect them. Usually it takes a couple of weeks for things to sink in before we really know.

    The consultant often does not have that luxury. Treatment needs to start now. He is also anxious to save the patient: "Look, just do what I say, and you'll be OK(-ish)", who is one of may patients he has seen and will see in an overbooked clinic that day, and is one of many complex medical responsibilities that he is trying to juggle. And some patients actually like someone to take charge, who appears to know what he is doing. Because they certainly don't.

    Not an excuse, but an explanation.

    I would agree that your situation was very badly handled. Unfortunately many hospitals do not have a cancer psychology department to consult and guide them, and those that do can be spectacularly unwilling to listen.
     
  16. Kronos

    Kronos Well-Known Member

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    I did not see a clinical psychologist at all, one was not part of the multi discipline medical team in charge of my treatment. Though I did meet one a couple of years later when one on my oncologists suggested that I might be in need of psychiatric following my instigation of a formal complaint where he figured high on the list of those making incorrect decisions when things began to go wrong with my treatment.

    When I learnt of his accusation I insisted that I should have an assessment and was referred to a psychologist who's report I later read. She concluded that I was indeed angry at the way my treatment and when things began to go wrong had been handled but overall I was as sane as the next man using very simplistic term. She felt that perhaps certain matters could have been handled in a less confrontational manner as had been.

    Unfortunately the whole experience has left me very wary of hospital consultants and I know I am now considered a 'difficult' patient as I tend to question everything and more importantly take physical notes and record all consultations
     
    Last edited: 28 Sep 2014
  17. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    Yeah, sounds like a cluster**** alright. They happen even when psychologists try to help because we're having to manage the same anxiety-induced insecure arrogance of professionals that patients have to face. At least we're trained to, and we're not the ones who are ill...

    I challenge patient 'reputations' all the time. There are no difficult patients, only difficult emotions. Illness, suffering and death are difficult situations after all. But being a professional means taking ownership of your difficult emotions and containing them, not projecting them onto your patient.
     
    Last edited: 28 Sep 2014
  18. adidan

    adidan Guesswork is still work

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    I was actually implying more that bureaucracy and red tape have stifled the devlopment of treatments not that 'researchers and clinicians alike are complicit in suppressing cancer treatment'. People with greater knowledge of the field than I also share this opinion.

    However, you are correct, 'When people sound stupid, it is usually because emotion gets in the way of reason' - that is true but it can also be because the listener is allowing emotion to get in the way of listening and hear what their emotions lead them to hear.

    Either that or I am seriously guilty of badly conveying my thoughts, which is also possible, and if that is the case I apologise for not fully explaining where I was coming from. :thumb:
     
  19. Nexxo

    Nexxo * Prefab Sprout – The King of Rock 'n' Roll

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    I agree that Department of Health and NHS bureaucracy can be a real pain. Usually that is a matter of limited funds and many competing priorities; change means upheaval and added resources while it is implemented, and services are often running at breaking point as it is. People entrench under pressure; management is scared to break things that are already under strain. Add to this that every ****wit Health Minister feels compelled to change the NHS yet again when he gets put in charge, like a dog pissing over us to mark his territory (and this happens often, as Health is a poisoned chalice in the world of Westminster. No minister lasts for very long, which means frequent changes at the helm, frequent changes in direction, and the NHS lurching across the seas like a rudderless ship covered in piss).

    Take my job: it is split between three (count 'em) services in five different locations, because none of them can afford a psychologist full-time. I cover little bits of everything. This not only means that I'm stretched very thin and part-time unavailable to different services at different times of the week; it also means that I cannot develop any of these services in what I fully well know they could be if I could dedicate my time and energy to a single service full-time. So in practice, I just keep things going; I don't get around to improving them much.

    It also means that neither of these services is inclined to dedicate many resources to a guy who is only there a few days a week. So I don't get my own office, my own clinic space, or local admin support; in most places I don't even get my own desk. Covering three different specialties also means that I have to be an expert in all three. Although there is an overlap to an extent, it is again pretty difficult to split my own development three ways.

    Needless to say that in the long term, all this is unworkable, and I'm looking for a single full-time job. At my advanced grade? Good luck with that. Everybody likes having all that experience and expertise on tap (and I have a lot of it by now), but nobody likes to pay extra for it because, as I said, they have many competing priorities. They'd rather hire me for a day a week, and then ask me to just see this urgent case, do this one thing on days that they aren't paying for and are not allocated to them. Of course they don't stop to realise that all three services/five locations are asking this so it is never just the one thing extra I'm having to juggle. And when I say no, I risk being seem as being inflexible and lacking in goodwill, or uncaring about the patients.

    Every clinician is struggling with scenarios like this. And managers? They conceivably have it even worse.
     
    Last edited: 28 Sep 2014
  20. G0UDG

    G0UDG helping others costs nothing

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    As someone who was recently treated for and survived Colon cancer I sympathise with Lynda my thoughts and prayers are with her and her family
     

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