We are Macmillan. Cancer Support
This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
Last week Clinical Nurse Specialist Kate Goldie was in our chat room answering your questions about palliative care. Thanks to all of you who came along with your questions, the transcript is below for those of you who were unable to join us. If you have any questions about palliative care or anything else, then please contact our Support Line.
Q: What should expect from my local health authority in terms of palliative care?A: When someone is at home, the G.P. should be responsible for coordinating care and support. This can be from district nurses, Macmillan nurses or local hospice. Personal care usually comes from the social work department. In some areas additional support is available through voluntary agencies charities e.g. crossroadsQ: Can you tell me the definition of ‘palliative care’?A: It sometimes differs a bit. Broadly though, it is the management of disease & symptoms when a cancer can’t be cured. The emphasis should be on quality of life.Q: Who gives palliative care?A: Palliative care can be given by a hospital, a G.P. or at a hospice as an inpatient or at home. You can get palliative treatment to control your disease, and there are palliative care teams attached to all hospitals/GPs.Q: Who defines quality of life? I ask because after two doses of chemo our first oncologist decided that my husband had no quality of life, and suggested that the 2nd line of chemo was "probably not worth it". We insisted and he is still here doing well with his liver mets gone.A: It can differ from person to person. I suppose it depends who gives the information, and for some people, knowing that there are options available to improve their quality of life is more important than continuing with any treatment.Q: I’m nowhere near needing palliative care yet (I hope!), but having been in the chat room for 18 months for now, I have seen many cases of it talked about. One thing that really bothers me is the number of people who, here in the 21st century, still have inadequate pain control. We see carers desperate to find ways to help their loved ones. Yet others seem to have wonderful pain control from “pain specialists”. I understand that this is a totally separate department in some hospitals, and these specialist doctors and nurses know ways to alleviate pain much better than the average doctor and nurse. Is this true – and if so how can we find them, as well as spreading the word that they exist?A: From people we speak to, this can sometimes be the case. It may be that knowing where to find these services could be clearer. We certainly do this on the helpline 0808 808 0000 and hopefully with better promotion of palliative care this will get better. The provision is different in different areas, and can be hard to find at times, information is available on our website.Q: When is it decided that palliative care is the only option left?A: When treatment is no longer controlling cancer the treatment becomes palliative.Q: What is involved in palliative care?A: Palliative care can involve treatments at hospital, chemotherapy, symptom management, and in many cases the use of complementary therapies to help people manage their disease.Q: I have a friend who is on tablet chemo, with a secondary tumour and cancer cells in the tissue in her left armpit. They say they won't be operating - does this sound like palliative treatment?A: At present your friend is having active treatment.Q: My mum is in palliative care, and is taking something called oxycodone. Is there anything else she could be taking, because this is making her sleep all the time, and miss out on her last few days/weeks of life?A: Sometimes it is necessary to give medication that makes someone sleepy to help control their symptoms. This can unfortunately be distressing for relatives/carers.Q: We have a Macmillan nurse coming round on Thursday. What help will they be able to offer the family?A: Macmillan nurses offer symptom control, emotional support, and can help make sure that necessary support is arrangedQ: How do you know when someone is in their final days?A: Like many aspects of palliative care, it differs from patient to patient. There is information on our website, or you could call and speak to one of the nurses on 0808 808 0000. It is difficult to predict how it will be for each person.Q: What can be done to help young children when their mother is poorly?A: There's some information here about talking to children about cancer which might be useful. Macmillan nurses can support the families as well depending on their needs.Q: I work for a palliative care support team as a Healthcare Assistant. We look after people who want to die in their own home. It's a very sad job, but I love it, as it's very rewarding and I meet some great families. We are with them as long as most people would like to die at home, with family and friends.A: In many cases people do want to die at home, but sometimes as their condition changes they may decide to go to a hospice. In many areas there is good support, but unfortunately this differs greatly throughout the UK. I worked in a hospice and the most important thing is that someone’s wishes are known so as much as possible they can die where they choose. With the appropriate help and support.Q: What about bereavement counseling? Some of us spent so much time looking after the extended family during the illness and passing, we are now feeling somewhat abandoned.A: There are many different ways to access bereavement support, sometimes formally or as part of a group. Again, this is different depending on where you live and what you are looking for. There is some information here.Q: I hope it is many years before I need it, but being single and having no family within 400 miles, I will need a hospice if the time comes. I'd much rather be in a hospice than at home with nurses coming in.A: It is important that people can die where they choose, it’s important that this is documented especially when you have no family. Please see this information about putting your affairs in order which includes a section on making choices.We have a campaign for 24/7 community nursing, please sign up if you would like to.The campaign is to ensure that everyone has the choice to die at home should they wish to, so please think about signing up. It doesn't take long and is free.
The way that the welfare system works is changing. This could mean that many people with cancer , like you and your family will be forced into poverty.
Please sign our petition to help us lobby MP's and Lords before they make important decisions about this matter.
To remind you, our calls are:
You can find out more about the campaign here.
If you're having financial difficulties at the moment, you may find our financial information helpful, alternatively please call our Support Line on 0808 808 0000 where a benefits adviser will be able to help you work out waht support is available to you.
Tell as many people about this petition as you can, we really need your support.
Last week nurses Jane and Heidi were available live in our chat room to answer your questions about lung cancer. Thank you to those of you who came along and asked questions, for those who didn't the transcript is available here. Please send this to anyone who you think might find it useful, and remember that we have lots of information about lung cancer on our site.
Tomorrow at 1pm we will be asking Rosemary Frazer questions about how to create a stir in your local area live in the chat room. I hope to see you there.
How often is lung cancer
only detected after it has spread and therefore symptoms from spread cause
difficult to say how frequently lung cancer is only detected after it has
spread - sometimes this can be the case.
kind of symptoms from the spread of lung cancer could cause detection?
would all depend on what part of the body the cancer had spread. Lung cancers
can spread to a number of different organs such as the bones, brain or liver. Symptoms
would be according to which of these organs are affected. It may include pain,
confusion or jaundice for example.
that only 6% of UK women can identify the symptoms of
lung cancer, could you tell us what they are please? Since I count myself
amongst that 6%!
common symptoms include a continuing cough, repeated chest infection, coughing
up blood, increased breathlessness - although these symptoms can also be caused
by other things. Less common symptoms may include hoarse voice, sharp pain when
breathing in, difficulty swallowing, weight loss and excessive tiredness
website explores symptoms
in more detail.
interesting is that although lung cancer remains more common in men, the number
of men diagnosed is falling and the number of women diagnosed is going up, so it’s
important for everyone to be aware of possible symptoms.
Do we have any idea
about why the number of women diagnosed might be going up?
women have started smoking which we know is the cause of most lung cancers.
I think part of the
problem is that everyone assumed that if you don't smoke you won't get lung
10-15 % of the people diagnosed with lung cancer will never have smoked.
My father has been
diagnosed a few days ago. He is 75 and has a tumour of 7.5cm. What should we
expect and what is the treatment for someone his age?
sorry to hear your father has been diagnosed. Treatment very much depends on
the type of lung cancer (there are different types), the stage of the cancer, stage
meaning the size of the cancer and the location as well as his general health.
You might like to give us a call on 0808 808 0000 and
ask to speak with one of the nurses, we are available 9am -8pm Monday to Friday.
Thanks Jane, apologies
if this has already been asked but what are the risk factors for lung cancer
aside from smoking?
risk factors apart from smoking are age, environmental or occupational exposure
(such as asbestos,) cannabis and passive smoking. For a small number of
people there may be a genetic link and we also know that past cancer treatment i.e.
radiotherapy to the chest area can be a risk.
a more information on the causes of lung cancer
Other than not smoking,
is there anything people can do to reduce their chances of getting lung cancer?
most important thing is to stop or not to start smoking. This includes pipes,
cigars and cannabis. General lifestyle factors to help reduce the risk of
cancer apart from stopping smoking are regular exercise, maintaining a healthy
weight, a balanced diet and limiting alcohol intake. Here is a helpful
link about the causes of cancer and how to avoid them.
What’s the risk with passive
now appears that passive smoking slightly increases risk of lung disease and
cancer but the risk is still much less that if you smoke yourself. It’s difficult
to say exactly whether the 10-15 % figure applies to passive smoking.
I'm constantly trying to
persuade my mum and brother to quit smoking for this very reason, but my
brother is going through a bit of a hard time, and sadly quitting smoking is
not the top of his priority list - though I know that it should be!
up smoking can be hard especially during times of stress. Its important that
someone gets as much support as possible. The national charity Quit can
offer more support around stopping smoking as can someone's GP http//www.quit.org.uk/
Jane, if you have smoked
for some time and then give up, will that make it less likely to get lung
cancer? Or is there a point when you've smoked for so long that it won't make a
risk of developing lung cancer falls quite quickly if someone stops smoking.
After about 15 years their chance of developing the disease
is similar to that of a non smoker so it’s never too late.
I have given up many
times I found hypnosis the most helpful even though I was very skeptical of it
having any value at the time but have always gone back to the dreaded nicotine.
some information about giving
up smoking on our website.
My father has lung cancer but never
smoked, is it genetic and more likely to be passed on?
about your dad, it can be really hard to try and make sense of what has
happened to someone and try to establish what has caused cancer. It’s not
always possible to do this. Some people with a close relative who has had lung cancer
may be at an increased risk themselves although the increase in risk is very small. The risk is slightly greater if the patient
was a non smoker and they developed lung cancer at a younger age or there is
more that one relative on the same side of the family who developed lung cancer
As radiotherapy can
cause lung cancer - could the increased diagnosis be down to people having more
scans following their normal cancer treatment?
risk of developing lung cancer from previous chest radiotherapy is very small and
far outweighed by the benefits of the initial treatment. There are strict
criteria in place to ensure people are not over exposed to radiation through
My half brother has been diagnosed
with lung cancer secondary to the brain, my father passed away from stomach
cancer a few years ago should I be worried myself?
few cancers are caused by inherited faulty genes. Our information 'are you
worried about cancer might help' which can be found within our information about
My brother has ceased his treatment
now and his doctor in the States said that the tumours have not shrunk and
timescales as far as they can say is 6 months. Is this a realistic timeframe?
much easier to answer specific, detailed enquiries through our helpline you might find it helpful to call us on the helpline where we
can help further if you call 0808 808 0000 and
ask to speak with one of the nurses, we are available 9am -8pm Monday to Friday.
Macmillan will be releasing a new exercise DVD in partnership with
Boots, and we’re looking for guest bloggers to test them out for us and let the
Community know what they think.
with Boots to spread the word that physical activity can be great for people
living with cancer. It’s not about spending hours in the gym, but keeping
active at an appropriate level during and after cancer treatment can boost energy
and help to reduce the impact of side effects.
Get Active, Feel Good is specifically developed for people
living with or after cancer. There are two to three different levels for each
activity, so you can find a level to suit you. The activities are set to music and led by cancer
fitness expert Dr Anna Campbell.
It will be
available for free in store, from Boots Macmillan Information Pharmacists who
have undergone training about physical activity and cancer, or online from
for Online Community members willing to try out a sneak preview of the DVDs
before they are released, and then write a blog post to let us know how you
you’ll be someone who isn’t very active at the moment, and you’d be willing to
try out the DVD for four weeks. After that, you’d just need to email me the
text of your blog and I’d publish it as a guest blog right here on the
Community News Blog.
interested in taking part, please email me on email@example.com, with a few details about where you
are on your cancer journey.
start using the DVD, please read the safety booklet that comes with it, and check with your doctor, nurse or physiotherapist if you are
unsure what activities are safe for you.
We asked Jacqui Graves, Macmillan's Treatment and Healthcare Workforce Programme Manager to tell us a little bit about Macmillan nurses, dispell some of the myths and give us a fuller picture of what they do. If you'd like to find out more about Macmillan Nurses, please see our information or call our helpline on 0808 808 0000.
Can you tell me a
little bit about the history of Macmillan nurses?
One of Douglas Macmillan's main reasons for setting up the
Cancer Relief charity back in 1911 was to provide good palliative and end of
life care for people with cancer, after his own father died of cancer. Much of the early work of the charity was
around trying to get access to hospices particularly to enable good end of life
In the 1970s, a trustee on the board of Macmillan named
Henry Garnett set up the first ever national fundraising appeal to pay for a number
of specialist palliative care nurses.
The first of these nurses was funded in 1975 and since then we've grown
the number, and also the type, of nurses we have.
What do Macmillan
Well, there are all sorts of Macmillan nurses. I think in the past we've always been known
for the Macmillan nurses that work in palliative and end of life care but the
reality is that cancer nurse specialists are clinical experts in nursing
practice within a specialty area - this can be focused on a population, such as young people; the type of care, such
as palliative care (which is really around relieving symptoms); the type of
problem, such as lymphoedema, or a particular type of cancer, such as lung or
One of the misconceptions about Macmillan nurses is that
patients expect them to provide all their 'hands on' care. Quite often they don't give direct 'hands on'
care to patients, but what they do is assess people with complex care needs and
plan that specialist care. What they're
doing when they go in to a patient's home or see them on a ward is assessing
their needs, assessing the needs of their carers and the family around them and
then coming up with a plan of how and who can best meet those needs. Though
they may not directly give that care, they will coordinate a team of people who
will and will provide cancer expertise and guidance to help them provide the
most appropriate care.
How are Macmillan
Traditionally Macmillan has used what we call a 'pump
priming' model where we fund the nurse's salary and some of their training
costs for the first 3 years. Before we
put a nurse in post, we make sure that the organisation that's employing them
has agreed to continue that funding once the three year Macmillan grant is
completed. So that at the end of that
time the Macmillan nurse doesn't just disappear, they continue to be a member of
the NHS or the hospice where they're working and it's the NHS or the hospice
that pays their salary.
Who is entitled to a
Macmillan nurse? How is this decided?
It isn't so much about who is entitled to a Macmillan nurse,
because Macmillan nurses are specialists.
The reality is that everyone who has specialist needs should be seen and
assessed by a Macmillan nurse in order to identify their specialist needs and
to develop an action plan or a 'care plan' in order to meet those needs. So there's not an automatic 'right' to a Macmillan
nurse, what happens is that through the course of the cancer journey, patients
are automatically referred if they have specialist needs and that's why most
people will get a Macmillan nurse.
At any point the patient can ask whether or not they can
have a Macmillan nurse and the team that are looking after the patient can have
a discussion as to whether that's appropriate for them. Or the patient can ask their GP who will have
that same conversation as to whether they need specialist input or whether the
needs could be equally well met by a ward nurse, GP or a district nurse for
How can I find out if
I'm entitled to a Macmillan nurse?
If you haven't yet had Macmillan involvement in your care,
it is perfectly ok for you or your family to say 'Can I/should I have a Macmillan
nurse?' This will then be discussed by
the people that are providing your care, to see if that's appropriate and
beneficial. Often you would be looked
after by specialist nurses that are not funded by Macmillan and don't carry the
Macmillan title, but they are specialist nurses in their own right and it
doesn't mean that the expertise or the care that they're offering is of a
lesser standard than any Macmillan nurse.
Is there anything
else you'd like to say about Macmillan nurses?
Macmillan has worked very hard to move away from the concept
that Macmillan nurses only look after people in their last days of life, and so
I think it's important that people understand that we provide Macmillan nurses
throughout someone's care, right from diagnosis
all the way through to end of life.
If you are not entitled to a Macmillan nurse and you are not
getting support from any other specialist nurse, district nurse or GP or if you
just want to talk, you can access support through the Macmillan helpline on
0808 808 00 00 and access cancer information online for free from be.macmillan or our website.
If you have any questions about our organisation our Macmillan team would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2010
what are these?