London - There are three short words that can transform your world for ever: “You have cancer.” And when renowned portrait photographer Gemma Levine heard them, she felt poleaxed.
Diagnosed with breast cancer in July 2010, Gemma, 73, who has photographed the likes of Sir John Gielgud and Princess Diana and has more than 20 books to her credit, felt as if she’d been thrown into an unknown and frightening new world.
In particular, she worried about what would happen once her oncologist had done what he could. As Gemma, who underwent a mastectomy of her right breast, explains: “Cancer is so much more than chemotherapy and radiotherapy. You are faced with unlimited questions such as what are the side effects? Will I have trained people to turn to and discuss things with at each stage?”
In fact, Gemma encountered an extraordinary legion of specialists en route - from the dentist who gave advice on coping with a dry mouth after chemotherapy to the podiatrist who had invaluable advice for sore, cracked feet.
The worry is, of course, that not everyone has access to such experts.
That’s why Gemma has put together a book, Go With The Flow, of her experience, including advice from experts who have treated her. “I’ve been very lucky,” she says. “The trauma of cancer is nasty enough, without the additional shock of all the other unknown elements along the way.”
Here, some of those experts share their advice on how to survive the cancer journey - physically and emotionally.
BRANDY CAN BOOST YOUR APPETITE
Jane Clarke, dietitian
There are times when the last thing people can deal with is eating, particularly during chemotherapy, which can cause nausea. So it’s a good idea to have a small meal a few hours before treatment, if you can.
If you are feeling sick, tell your doctor, as there are anti-sickness pills that might help - sipping a fizzy drink (mineral water or lemonade) through a straw can reduce nausea, too. If you don’t feel sick, but just don’t want to eat, bizarrely a glass of sherry or brandy can stimulate your appetite, as long as your medical team okays it.
On the days you’re feeling well, try to cook ahead for the off days and freeze foods you can easily stomach, such as a light spinach or chicken soup - these only require reheating once defrosted. If you’re not a cook, get friends or family to help.
One of the side-effects of chemo is a sore, ulcerated mouth. Choose soft foods such as sorbet or creme caramel, soup or food with sauces or gravy. Dryness can also occur, so keep food moist and try to drink at least two litres of fluid a day. But most importantly, don’t beat yourself up about food.
Hormone treatment such as steroids can lead to weight gain, but don’t let food and eating become medicinal and worrisome. And if you feel like a glass of wine? Have one as long as your medical team are happy with this. Now is not the time to do without.
Glenn Lyons, trichologist at the Philip Kingsley clinic, London
Not everyone loses their hair through chemotherapy. However, if you do, it can occur very quickly (within a couple of days of treatment).
Women often use cold caps, which are said to reduce blood flow to the area and hence the concentration of toxic drugs reaching the hair follicles, but there’s no guarantee they will do their job.
Remind yourself hair loss is only temporary - full regrowth eventually returns in 99 percent of patients, usually within three to six months of finishing treatment.
But this doesn’t take away from the huge psychological impact of hair loss on morale. If it is likely (your oncologist will know as some chemo drugs don’t affect hair), I advise patients with long hair to get it cut short before treatment. This ensures the loss will not only look less, but emotionally it may be easier if it occurs in stages.
Always take someone with you when choosing a wig. Buy one slightly longer than the style you ultimately want and get your hairdresser to cut it to fit your face and head shape.
Wearing wigs does not inhibit hair growth, but leave them off whenever possible to minimise any damaging traction on new hair growth.
SUCK AN ICE CUBE DURING CHEMO
Dr Philip Freiberger, dentist
Because chemotherapy targets cells that reproduce quickly, this includes not just cancer cells, but also those in the lining of the mouth. This can cause soreness and ulcers, and can affect the salivary glands, giving you a dry mouth.
Make sure you see your dentist as soon as possible (at least a couple of weeks before starting chemo), and they’ll get your teeth and gums as healthy as possible.
Keep hydrated by drinking still water; if appropriate, your dentist can prescribe saliva-replacement supplements to help.
Sucking ice cubes before and after certain drugs are given can also help. If soreness does occur and you can still use a toothbrush, use a soft bristled or child’s one; toothbrushes can also be softened in hot water.
Acidic drinks such as orange and grapefruit juice and spicy foods are also worth avoiding - try warm herbal teas instead as they may be more soothing.
You can continue to use dental tape or floss every day (to prevent plaque build-up and gum disease), but you need to floss gently because chemotherapy can cause gums to bleed more than usual.
DELAY BREAST RECONSTRUCTION
June Kenton, owner of fashion and lingerie firm Rigby & Peller
I advise women to wait a good six months, even a year, for reconstruction as in my experience the normal breast increases in size slightly when everything settles down (this doesn’t apply if you’re having a double mastectomy) and the implant tends to be too small in comparison.
In the meantime, and I can’t stress it enough, go and see someone for a properly fitted bra - ideally before you have the mastectomy. Some 85 percent of women are wearing the wrong size and, as your prosthesis will be based on this, you’re starting off on the wrong foot.
While you’ll be given a prosthesis very soon after the op, I’d wait three months before using it - definitely until you’ve finished radiotherapy, giving scarring time to heal.
In the meantime, wear a “softie” -machine-washable padding inside the bra, available from any lingerie shop for less than £10 (about R130).
Don’t wear an under-wired bra during this time either as this can aggravate scarring or sore areas. When you start with the prosthesis, don’t waste time putting it in the pocket of special mastectomy bras as these often fall away from the chest wall leaving an unsightly gap.
Putting the prosthesis directly inside the bra makes it touch the chest wall and in ten to 20 minutes the warmth of your skin means the bra and prosthesis will act as one.
A BIG LAUGH HELPS PAINFUL SWELLING
Bernie Martin, remedial masseur for cancer and lymphoedema
Painful swelling in the arm and hand, called lymphoedema, affects up to 40 percent of women after breast cancer surgery. It is a plumbing problem: lymph nodes help keep fluid moving throughout the body - but when they’re affected by radiotherapy or chemotherapy or removed, there may not be enough functional pipes and drains to handle all the fluid.
Moderate exercise - such as swimming or stretching - can encourage the fluid to flow freely around the body. Don’t go crazy with exercise, though, as that can make things worse.
Compression garments (prescribed by the lymphoedema clinic or “surgical appliances department’ of the hospital) are a lifesaver.
Get at least two (to buy they’ll cost about £10) - that way one can always be in the wash. Also replace after four to six months because they lose their tension.
Sometime these roll down - particularly if you’re a little overweight, but skin glue can help (ask your lymphoedema specialist).
You can even sew the tops of them on to the arm of a vest.
And don’t be shy of a good old belly laugh: this deep lung action is thought to help promote the flow of the fluid, in the same way moderate exercise can.
YOU DON’T ALWAYS HAVE TO BE POSITIVE
Dr Sue Gessler, clinical psychologist, University College Hospital, Macmillan Cancer Centre
My patients are often terribly hard on themselves. Not only do they often blame themselves for getting cancer (perhaps for taking on too much, pushing themselves too hard), but they can impose an enormous burden on themselves to “be positive”.
Often friends and relatives will demand this, too. Even after the most difficult consultation they will emerge cheerfully focusing on only the good, or less bad, elements of what has been said.
This may seem helpful; however, the person with the cancer is then doubly trapped: they have their own fears and anxieties and they have nowhere to discuss them.
Don’t be afraid to tell friends and family you have down days - and don’t be afraid to ask for help. Seeing a psychologist or counsellor can make a huge difference.
This may be for as little as one session, but it allows people the freedom to talk and not attack themselves for feeling low or worried.
Minimise your use of the internet to research your condition. If you must look, make sure the sites are reputable - ask your medical team.
Also try to minimise your response to calls and questions from friends at this time - don’t feel you have to tell everyone all the details just because they asked. Find your own way of avoiding the question, by saying, for instance: “Let’s talk about anything other than my illness.”
People will understand. If you want to keep people in the loop, try writing a blog or a group email to family and friends.
AND WHAT ABOUT YOUR FEET?
Nigel Tewkesbury, podiatrist
Within just a few weeks of starting chemo skin can become dry, hot and tender with a tendency to crack and peel.
To help prevent this, do not massage or rub the hands or feet during treatment and up to a week afterwards - the pressure may increase the cracking or tenderness. It’s also worth taking a break from certain exercises that put extreme pressure on the feet (running, aerobics or jumping) and not using any hand tools that involve squeezing such as gardening tools, or even knives to chop food.
Apply moisturiser regularly. Try an emollient cream containing urea (or ask for a cream suitable for treating eczema). If applying before bed pop cotton gloves and socks on top to keep in the moisture. Don’t go bare foot and avoid tight socks. Keeping insoles in the fridge and even a bag of frozen peas can help - run your feet over them at the end of the day.