GOING THROUGH CANCER treatment can be bewildering and stressful. It can be hard to know where to turn to get the information and support that you need, and some of the information you find may do more harm than good. We want to show you where you can get the help you need. Many of the resources described in this chapter are Internet-based. If you’ve never used the Internet, you may need to ask a friend or family member to show you how. Alternatively, you could use a library or ask a friend to print things out for you.
Cancer centres, or drop-in centres, are usually run by a voluntary sector organisation and are based in or near large hospitals. They have been designed to meet the different needs of patients and families going through cancer treatment. They are open to anyone affected by cancer and their family, at any time during treatment or even years later. No appointment is needed.
In the UK, the leading chain of hospital-based drop-in centres are Maggie’s Centres – their website tells you which hospitals have them: www.maggiescentres.org. Macmillan have a drop-in centre in most hospitals, although these are normally small information hubs. There are also the UK-wide Jewish Chai Cancer Care centres and local Christian cancer centres. Breast Cancer Haven has centres across the UK offering specific support for people affected by breast cancer. Finally, there are Penny’s centres and the Big C centres. (See the resources list here for more details.) There may be others local to you.
Drop-in centres are a welcoming friendly place in what can otherwise feel like a hostile hospital environment. They have free tea, coffee and biscuits, and there is always someone to talk to, whether you are a patient or a relative. They understand what it’s like to live with cancer and know how hard it can feel. People will be nice to you there – and sometimes that can mean a lot in itself. They can be a better place than a hospital café for your relative or friend to wait while you are having tests or treatments.
In addition, most drop-in centres offer complementary therapies, one-to-one and group support, counselling, gentle exercise and mindfulness classes, and beauty classes for patients, and most of these are free. If there is a drop-in centre near you, we strongly encourage you to pop in for a cup of tea before you go home, and take advantage of everything they offer. If you don’t have one near you, like us, your cancer nurse should be able to tell you if similar courses, classes and therapies are run locally, and give you information so you can attend them.
Here are some of the courses offered in drop-in centres:
This is a two- to three-hour class for cancer patients designed to improve your well-being and help you feel more confident about your appearance. Trained beauty consultants sit with a small number of you and go through skincare and make-up products, and show you how to apply them. If you have lost your eyebrows and eyelashes due to chemo, they will show you how to draw them on, which can be challenging when there is no hair to guide you. You are sent home with a large bag of skincare products, perfume and make-up, which is an added bonus.
In group support sessions, you meet regularly (typically once a week) with other patients in a similar situation to you. Your partner may be invited to join too. You talk about whatever you like – it doesn’t have to be cancer-related – and a facilitator sits in the session to help lead and support the group. Research shows that group support can reduce psychological distress and improve quality of life in people with cancer, especially if you don’t have a close supportive relationship in your personal life.
Here you are paired with someone who has been through the same diagnosis or a similar set of treatments to you. Whereas the doctors and nurses can tell you what will happen to you, your peer supporter (sometimes referred to as your ‘cancer buddy’) will tell you what it’s really like to have each treatment. They will give you tips for weathering the storm, and this can be invaluable.
This is one-on-one support with a psychologist or trained counsellor. Most cancer units have access to a psychologist who is used to treating cancer patients and their unique set of needs and concerns. Some people find this kind of professional support extremely helpful in dealing with cancer-related stress.
Mindfulness and meditation encourage you to focus on the present moment and your five senses (sight, sound, touch, taste and smell) while you concentrate on your breathing. This means you naturally ‘zone out’ from distractions, fears, negative thoughts and things not immediately present. If negative thoughts do enter your mind, you learn to acknowledge them and let them go, instead of dwelling on them. It only takes a few minutes every day, and can help you feel calm and in control again. There is now strong research evidence that mindfulness can reduce symptoms of stress in women with breast cancer.
Most drop-in centres run mindfulness and meditation classes. Alternatively, you could do it yourself at home. Liz used the app ‘Headspace’, which guides you through a short daily meditation. We also liked the book Mindfulness: A Kindly Approach to Being with Cancer by Dr Trish Bartley (Wiley-Blackwell, 2016).
These are therapies intended to complement, not replace, your conventional medical treatment for breast cancer. They can make your cancer experience easier by reducing your stress and improving your well-being. It’s also lovely to let someone pamper you occasionally.
There is no good scientific evidence that complementary therapies improve your chance of surviving cancer. If you do choose to use them instead of normal breast cancer treatments, this could seriously reduce your chances of long-term survival and lead to an early death.
Massage can make you feel better generally and is said to improve the lymphatic circulation. If you were used to having firm massage treatments before you got breast cancer, we suggest you have a light, relaxing massage the first time. There are many different kinds of massage:
● Swedish massage: a medium-intensity full-body massage.
● Chinese massage: includes deep-tissue massage focusing on channels or ‘energy points’ similar to acupuncture points.
● Shiatsu: a Japanese massage technique that can be high-intensity.
● Deep tissue massage: works on removing ‘knots’ and relieving long-standing tension.
● Aromatherapy massage: a massage therapy with nice-smelling oils (see here).
● Reflexology: specialised foot massage using ‘energy points’.
Most cancer centres offer massage treatments without question, but the experience may be different to a massage salon on the high street. For insurance purposes, most salon therapists need you to get a letter from your doctor saying that it is safe for you to have a massage. This can be very annoying (Liz was turned away in tears during chemotherapy because she didn’t realise she needed a letter). You should probably wait for several weeks after your surgery or radiotherapy before you have a massage, and make sure your therapist knows which treatment you have had so they can tailor your massage accordingly.
Acupuncture is an ancient Chinese therapy in which a practitioner inserts very fine needles into the skin at key points on the body. The needles stimulate nerves beneath the skin, causing the body to produce natural chemicals called endorphins that give you a feeling of well-being and work as a natural painkiller.
Some research studies have shown that acupuncture can help reduce chemotherapy-related side effects (such as nausea, aches and pains, and insomnia) and help with severe hot flushes, but these studies aren’t particularly high-quality. Acupuncture won’t do you any harm, as long as it is carried out by a skilled practitioner who uses sterile, clean needles and knows to avoid the arm on the side of any lymph node surgery.
Trish once tried acupuncture for migraine; the acupuncturist was charming and the experience was not unpleasant, but it didn’t cure the migraine.
Aromatherapy uses plant-derived fragrant oils to stimulate your sense of smell, which aromatherapists believe helps healing, although there is very little scientific evidence to prove this. It is often combined with massage, and can be a great way to relax if you like the scents used.
These include Reiki, therapeutic touch and spiritual healing. They are meant to restore your well-being by unblocking energy channels and letting healing energy flow through you. Neither of us has tried these, and we are both a little sceptical. However, if you want to try them to help you heal, there is no harm in having them during your cancer treatment.
There are three main UK cancer charities that can help anyone with breast cancer. The most well-known resource for patients with any type of cancer (and their relatives) is Macmillan Cancer Support, a large UK-based charity whose motto is ‘no one facing cancer should walk alone’. Their extensive range of resources (both online materials and printed booklets), the much-valued Macmillan helpline (human support on the end of the phone) and face-to-face support where needed, are free. Macmillan know that cancer affects every aspect of your life – from the way you look to the impact on your family finances – and, as they say, they’re there to help. You will find their free leaflets in the waiting room of your cancer centre, which you can also download to send to family and friends.
The charity Breast Cancer Care is a similar resource aimed at patients with primary or secondary breast cancer, and their families. They also have many information leaflets about breast cancer treatments and coping with cancer that you may be given by your breast care nurse. You can also download these online. They offer a fantastic free service called ‘Someone Like Me’ where you can email or talk to a trained volunteer who has also had breast cancer and knows exactly what you are going through.
The charity Breast Cancer Now is the UK’s leading breast cancer research charity, and they also offer information about breast cancer treatment and help you understand what is happening to you. See here for contact details for these charities.
In the UK, both Macmillan and Breast Cancer Care have online forums where you can talk to other cancer patients about topics that matter to you. You don’t have to use your own name, and the forums are moderated. This means that someone checks the postings and gives the discussion a steer when needed, for example, suggesting that the content or tone of a thread is inappropriate. Trish used a forum on the American charity website BreastCancer.org. All the forums have groups for patients starting treatment in a specific month, whether that is surgery or radiotherapy, so you can talk to people having treatment at the same time as you and support each other through it. Trish felt a huge sense of relief as her group ticked off the early milestones (that first chemo visit was horrible, but it didn’t kill us) and the forum brought pragmatism and a sense of humour to the daily grind of cancer treatment.
There are many other websites with online forums (see for example Inspire: www.inspire.com). Feel free to explore and find one that works for you. However, some forums may not be moderated, which means that people can post misinformation or potentially hurtful comments without being checked. Because of this, we’d recommend sticking to the forums listed above. If you do use a different forum, do a bit of exploring on the site first to make sure that it feels right for you.
‘Social media’ means using the Internet or applications such as Twitter, Facebook, Snapchat and WhatsApp to stay in touch and reach out to people. If you don’t use any of these sites, please don’t worry. If you do, you may want to use them as a means of gaining information and support.
We are both active twitter users. Liz (@Liz_ORiordan) ‘came out’ on Twitter the day after she was diagnosed and found a whole new world of friendly breast cancer patients who shared their tips and tricks to cope with treatment, in effect creating her own public forum. Trish (@trishgreenhalgh) didn’t tell people. Instead, she used Twitter to get information and support about breast cancer by following people and organisations who tweeted about the condition. To get you started, we recommend following Macmillan (@macmillancancer), Breast Cancer Care (@bccare), Breast Cancer Now (@breastcancernow), Breast Cancer Chat Worldwide (@bccww) and After Breast Cancer Diagnosis (@abcdiagnosis). For men, we suggest the Male Breast Cancer Coalition (@MBCC_MHBT).
To get a head start at finding people who tweet a lot about breast cancer, you could join a ‘tweetchat’. This is an hour-long discussion every week led by patients that focuses on a different topic each time. The hashtags to follow are #bccww in the UK (9pm, Tuesdays) and #bcsm in America (9pm Eastern time, Mondays). You can also get information about the latest developments in breast cancer treatment, since many doctors and patients now live-tweet from scientific conferences and share the key points.
If you use Facebook, you could join Breast Cancer Care’s online Facebook community (breastcancercare). There is a private community called ‘YBCN’ for young women with breast cancer, and one called ‘Flat Friends’ for women who have had a double mastectomy. Spend some time searching for groups that you like the look of.
We can’t stress enough how important our online support was in helping us get through breast cancer and chemotherapy. Being able to swear, laugh and cry about everything that is happening to you, with someone who understands exactly what you are going through, can be lifesaving.
One thing that we have learned is that having cancer can be lonely. You may not meet another breast cancer patient during your treatment, and it can be very hard to know whether the physical symptoms and emotions you are feeling are normal. Getting support from people who understand what you’re going through, whether it’s from a cancer centre, a therapist or other patients, can make a huge difference to your well-being.