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Ciaran Devane

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The Loneliness of Cancer Patients Is a Sad Indictment of Society

Posted: 11/02/2013 23:00

If you have ever cared for a loved one toward the end of their fight against cancer, you may find it hard to understand why someone would choose to die from the disease if they had any other option. Yet in the UK, more than half of medical staff who care for those with cancer have known patients who reject treatment altogether because they lack support at home from family and friends.

Having cancer is a life-changing experience, and how people choose to deal with the disease is a deeply personal decision. Some may stand to gain only a few extra weeks from treatment and so decide not to go down that route. For others, it could offer the chance of a much longer life or even a cure. We should all be troubled to hear that some patients are accepting a potentially avoidable death from cancer simply because they have no-one in their personal lives to help them through treatment.

Cancer patients by no means have a monopoly on feeling isolated and alone. Far too many people in our society, many of them elderly, lack the practical and emotional support of family and friends that the rest of us often take for granted. In fact the government is currently trying to measure loneliness amid concerns it is having severe consequences on people's health. Cancer and its treatment, however, can inflict a particularly debilitating toll on the body and mind - one made worse by isolation.

Imagine only having your colon cancer diagnosed after you collapse in the street because no-one has nagged you to see the doctor about your recent weight loss and tiredness. You'd noticed some blood in your stools, but didn't feel close enough to anyone to confide your worries.

Now imagine you've been told that you've a decent chance of surviving the cancer but you'll need to have a major operation that will leave you with a colostomy bag, and several rounds of chemotherapy that will make you feel sick and exhausted. There are no family or friends at home or nearby to help you wash, cook, clean or shop, give you a lift home from your chemotherapy appointments, or raise your spirits when you're feeling down.

Sadly, and understandably it is possible to understand why some isolated cancer patients choose not to go through with it all. But does that mean we should simply shrug our shoulders and leave them to what is effectively a slow suicide? What if they would have chosen differently with just a bit more support at home?

Rejecting treatment is, of course, an extreme example of the effects of isolation on cancer patients. The wider picture, although less dramatic, is equally distressing. One in four people newly diagnosed with cancer in the UK will lack support from family or friends during their treatment and recovery - that's more than an estimated 70,000 people every year not getting help at a time when they need it more than ever. Of those, around a third - an estimated 20,000 people each year - will receive no support whatsoever, facing cancer completely alone.

More than half of those who are isolated have skipped meals or not eaten properly because of a lack of support at home. More than one in six have not been able to collect a prescription for their medication, and more than one in 10 have missed a hospital or GP appointment. The numbers, revealed by Macmillan's new Facing the Fight Alone report, show that isolation affects a significant proportion of cancer patients and has a real and negative impact on their lives.

Most people who lack support say it's because their family and friends are too busy to help or live too far away. More than two-thirds say they would have benefited from more support from their loved ones, which means that right now there could be as many as 50,000 people recently diagnosed with cancer across the UK who could do with help from someone close to them. Does someone you know have cancer? You might want to have a word, or offer a hand.

At Macmillan, we believe no-one should face cancer alone. Both healthcare professionals and society as a whole must recognise how serious isolation can be for cancer patients. We must make every effort possible to mitigate the effects. The government's plan to measure isolation nationally will keep momentum going on this issue, but we need them to do more than just measure for those with cancer. All patients must be given a care plan to capture their problems and highlight any extra support they may need during and after treatment.

The lives of those who are isolated are just as valuable as those with close family and friends, and we must give them just as much of a fighting chance. People may or may not choose to accept treatment for cancer for many reasons, but if someone who chooses not to would they have changed their mind if they simply had a bit more support, is that really a choice at all?

 
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If you have ever cared for a loved one toward the end of their fight against cancer, you may find it hard to understand why someone would choose to die from the disease if they had any other option. Y...
If you have ever cared for a loved one toward the end of their fight against cancer, you may find it hard to understand why someone would choose to die from the disease if they had any other option. Y...
 
 
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01:17 PM on 02/14/2013
My mother in law's best friend was recently diagnosed with cancer. It has been so difficult for her and her family was not going to treatments with her. Thus, my mother in law has sat with her through every single 3 hour treatment and recently, the surgery. I wish there was some way to find lonely people and pair them with a friend. This article is quite sad, and I wonder what a solution may be.
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08:09 PM on 02/12/2013
Having watched two people go through the NHS cancer system, my father about 16 years ago, and my 85 year old mother presently, all I can see is, it's a shambles.

There are highly trained and I'm sure, dedicated, people in the system. But there is a system that says do this this and this, and tick those boxes. And it's overseen by a regulatory system that's just a sick joke.

Even worse. The NHS is one of those institutions, like education, that politicians can't bear not to tinker with, for the sake of headlines/soundbites.
07:25 PM on 02/12/2013
I disagree cancer patients being nuisances. Having recently gone through my own battle with breast cancer (plus I had tons of support), I honestly believe that most are scared to be with someone with cancer. It reminds them of their own mortality and most don't like to have to think about that. I add validity to my thought even by the mere fact of how "society" feels that if we lose our hair to chemo, then we should cover our heads either with a cute little beanie or even better yet, a wig that makes "us" look "normal". I will admit that I did buy into that line of thinking. How dare "I" offend someone by letting them see my bald head, right? Well, I think the coin needs to be flipped people. Breast cancer is the leading cancer of all women then why the hell is it always being swept under some "pink" carpet or cause? My cancer wasn't pink. My spirits certainly weren't pink and rosey. I've been cut, scarred and poisoned but the majority of people don't want to know or worse yet, see the truth. It's their fear, not that they think we are (were) a nuisance. Work on the fear and acceptance, then more people will be willing to step up and help. Oh and by the way, I've been wearing my bald head with peach fuzz proudly. If you don't like it, don't want to see it, then screw you - look the other
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Scholastica8
RINOS & Bull-Mooses UNITE! People Matter!
05:34 PM on 02/12/2013
Sadly, people who are ill or injured are often regarded as nuisences by their families. I had a friend who fought cancer for 5 years. On family occasions she'd often over-estimate her strength... and so would get sick at the family gathering. Rather than making things easier for her, members of her family would accuse her of grand-standing... trying to be the center of attention because of her cancer.... and basically ruining the event for everyone else. Some asked her not to attend.

The author above mentions a person collapsing on the street due to colon cancer because nobody was around to notice weight loss or harass them about getting a colonoscopy. Where I live, by state law, following any general anesthesia, one must be signed out and driven home by a friend or family member. One cannot take public transit, hire a cab, or use a medical transit van. This has made it extremely hard for me to get a colonscopy. The doctor is available only on certain days. Scheduling must be done 6 weeks ahead. I have no remaining family, and no friends are willing to take a day off from work to shuttle me... even if I pay them their daily wage. They are afraid to sacrifice a personal day.
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HUFFPOST COMMUNITY MODERATOR
MelRoy
I think, therefore...here I am
11:35 PM on 02/12/2013
Gosh, that's terrible. I had a friend with terminal cancer who lived alone in a flat. Not only did my husband and I take turns seeing him every day to make sure he had everything he needed and that he was eating something (not much of an appetite), I would prepare the food so he could have people over, while he was still well enough. He got progressively worse, but we took him out to do things he could still manage.

A couple of times we had him stay with us, but he wanted to be at home.

He should have had a full-time carer (he had a spare room), but the council was terribly slow off the mark - they didn't approve the benefit until he was in the hospital for the last time.

The problem is, there aren't enough carers, they are poorly paid and therefore many lack adequate training and motivation, and especially hard to find someone who can commit to round-the-clock.
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Scholastica8
RINOS & Bull-Mooses UNITE! People Matter!
01:31 AM on 02/13/2013
Compassionate people are worth their weight in gold. Thank you for caring for your friend.
10:10 AM on 02/13/2013
As a general rule any one who has to have treatment on the N.H.S is asked before procedures if they have any one to accompany them home. My mother has had cancer treatment 3 different times and has always been asked this.
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Scholastica8
RINOS & Bull-Mooses UNITE! People Matter!
05:22 PM on 02/13/2013
It's the same in the US... However, it's a Catch-22. If you have no one you either end up in nursing care (and if you are alone, have pets, or a rental contract that lets a landlord terminate your lease for non-occupancy, it can be a nightmare) or you do without.... or you find a way to lie.... They may try to put people together with charity organizations, but that's not always possible. In fact, here in the US people, particularly single women with breast cancer, often end up homeless, living in their car or on the streets... because they get fired for absences (often to get them off the company's insurance)... and from there it's down hill. I've met 3 women this happened to... and my range of acquaintances is not that broad... so if I've met 3, I shudder to think how many there are.
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jgamble28
ya never know.
05:10 PM on 02/12/2013
How sad to be all alone and have cancer. I feel so sorry for them.
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hattie54
05:42 PM on 02/12/2013
I do too!!Why can't we all just go real quick in our sleep.Why do good people and children have to suffer and die with cancer when the evil people still walk this earth?
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Kristin Maeder Shamhart
04:09 PM on 02/12/2013
This article rings true. I attended a support group where one woman told the group she would not continue treatment. She had a six year old child and had no help during treatment. Most of us were also going through treatment or just out. I do not know what became of her but my heart hurt for her.
04:01 PM on 02/12/2013
Fairweather friends - always there when you don't need them.
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Kristin Maeder Shamhart
04:09 PM on 02/12/2013
But a person in treatment for cancer does need someone.....
12:27 PM on 02/12/2013
Ciarane,
As usual a measured and thought provoking piece.
As a Cancer Survivor myself, i have had all of those thoughts and have also been blessed with close family and friends who helped me get through it.
As i have said many, many times, there is no rule book with Cancer: you do what you think is right at that time. It is at times very hard to be logical or neutral in your thoughts you are clouded by confusion and at times extreme terror.
There are many conflicting issues: 1, The NHS have what they call Key Workers. These specialists are there to help and guide you through every facet of your journey - which includes emotional support. Trouble is, as every one is seeing, the NHS is in termoil and these specialists are either not there or are 'just a badge'. In principle, it should help this issue and i for one have been campaigning hard for these to be more effecive. 2, organisations such as Macmillan do do an incredible amount of work to help combat these issues, but sometimes 'at the coalface' no one is ever informing you or guideing you on these matters.
Cancer is incredibly complex as a disease and yet perhaps more so, is incredibly complex to deal with. each person has to be made aware of what help there is out there, where to get it and what it can do for you.
Its all a very tough call !
05:06 PM on 02/12/2013
Do you know if there is anything like the "Key Workers" in the US? I could volunteer to support a cancer patient in this way.
05:24 PM on 02/12/2013
Hi Mickey,

Not really sure, but am very much aware of Livestrong - in Austin and they do have some great care programs that you could link up with. They like many charities are always looking for advocates or helpers in many areas

Hope that helps and good luck - the Cancer World always needs people like you!

Peter
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10:20 AM on 02/12/2013
a chap called alan taylor was told he had terminal cancer last year.......

he devised a diet that was designed to cure cancer with special foods............

his latest scans show he is now clear of cancer.....although his oncologist told him there was nothing
that could be done to save him..........................

NOW YOU WOULD THINK THAT GROUPS LIKE MACMILLAN AND CANCER RESEARCH U.K.
WOULD ADVISE EVERY CANCER PATIENT TO TRY THIS DIET AS IT JUST MIGHT CURE
THEM......

MR ALAN TAYLORS DIET CONSISTED OF..................

organic apricot kernals
curcummin tablets
barley grass powder
selenium tablets
vitamin c tablets 24 per day
vitamin d3

you can google ALAN TAYLOR CANCER DIET FOR FULL DETAILS FOR HIS CURE FOR CANCER

NOW IT MIGHT NOT CURE EVERYONE BUT IF IT CURES 50% OF ALL CANCER PATIENTS
AROUND THE WORLD THEN THAT WOULD BE A GOOD THING...........

ITS HARD TO IMAGINE WHY ONCOLOGISTS AROUND THE WORLD ARE NOT INSISTING ALL
THIER CANCER PATIENTS TRY THIS DIET AS ITS NON TOXIC FOOD.

OH YES ITS A LOT CHEAPER THQAN THE EXTORTIONATE PRICES CHARGED FOR CANCER DRUGS BY BIG PHARMA.........
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hattie54
02:35 PM on 02/12/2013
Interesting!! I have heard of this thru the years,changing what one eats etc.I saw a post last year of a woman saying her family doctor told her in the 1950's that the gov't had a cure for cancer but it would remind quiet coz it would put all the Dr's out of business.
10:48 PM on 02/17/2013
A healthy diet is a good idea for everyone, but it's not a good idea to abandon conventional treatment in favour of unproven supplements without discussing this with your doctor/oncologist.

CRUK and Macmillan are guided by good clinical practice, EU regulations and HR conventions, and rightly so. All treatments should prove themselves safe and effective in controlled and repeatable clinical studies before being used on the general population.

If this man's scans show complete response, what other treatment did he have before opting to use supplements?
A cure is not the same as having a scan showing no tumours currently. Perhaps in 5 years if he is still clear, a cautious claim could be made.
That does not, however, mean that this will be effective for anyone else, let alone the 50% mentioned above.

Nor is there a conspiracy by drug companies to rip off and defraud. Pharmas are not the only institutions driving the development of new and existing treatments, and treatments don't consist exclusively of licensed on-patent drugs.

I would also suggest researching the effects of these supplements, especially large amounts of vitamin C. Don't assume they are benign just because they are not classified as drugs. There should also be caution due to the possibility of interactions with medications that cancer patients may be taking.

I wish anyone suffering with cancer and the effects of treatment the very best of luck and love.
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09:56 AM on 02/12/2013
"Now imagine you've been told that you've a decent chance of surviving the cancer but you'll need to have a major operation [my note: after which you may get a major infection, simply from having been in the hospital] that will leave you with a colostomy bag and after several rounds of chemotherapy that will make you feel sick and exhausted." And the odds are pretty good that once it is 'cured', it will come back again, in 1-5 years (or 10). And you REALLY think that people reject treatment because they are alone and have no support? I'm 64. If you said that to me, I'd say, "Thanks, but no thanks." If I had children still at home, I would probably think differently. But I doubt it (as long as my children would be in the hands of their father or a loving relative after I died). I think we should start accepting that death is inevitable and stop clinging so hard to life. Why are there never any articles in the news about how to prepare for death, which is not The Enemy and which is going to get us all sooner or later?
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Kristin Maeder Shamhart
04:15 PM on 02/12/2013
I did all I could FOR my children. Even though its been 15 year, it could come back. I have side effect too that will probably shorten my life but all in all, the treatment was worth it. I have seen my grandchildren born, my daughter graduate from college and also get her Phd, I have gotten the chance to travel some, meet new people....in other words, live. So yes, I would definitely do it again since without it I am almost sure it would have been back in a couple years. But as I age, I do see where if it were only going to give me a few more weeks, I would pass.
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Walter Scotten
03:23 AM on 02/12/2013
I look at all the lonely people. Beatles
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fit4ufor3rd
i can want peace and the death penalty too
12:44 PM on 02/12/2013
AHH look at all the lonely people
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Scholastica8
RINOS & Bull-Mooses UNITE! People Matter!
06:34 PM on 02/12/2013
Loneliness is an emotional thing. One can be completely alone... and not be lonely. One can be in the midst of family and friends or a vast crowd... and yet be lonely. This article is about abandonment.... by society... by friends... by family.... and the rejection of both responsibility and compassion.... and what makes cancer, or any significant illness or injury worse, is often the realization that while the condition may not be a permanent part of one's future.... the condition of being a person that no one needs.... and that no one really helps.... or cares about.... is the whole of one's future..... because family and friends have died or moved far away.... Those who are local may have their own health problems... their own family problems.... I've heard people tell others, "Sorry, but I just have no room left in my life for you." When it reaches this point ... people chose slow suicide by cancer ... rather than having to make the decision to take pills or use a rope or plastic bag or a bullet.