contact - cclg...‘chemo brain’ does exist (pg 4) and this issue offers some practical tips on...

Contact A helping hand for families of children and young people with cancer

Children’s Cancer and Leukaemia Group - www.cclg.org.uk

Before my now 7-year-old son Ben was diagnosed, I always thought chemotherapy was just IV fluids.

I never thought it could be medicine or tablets too. But then again, I never in a million years thought that a child of mine would ever get cancer. When I heard those life-changing words, my first thought was “Will he lose his hair?”. Looking back, that was the least of our worries!

We followed the UKALL2003 protocol and his treatment began with five days in hospital to flush out and hydrate his system followed by daily chemotherapy drugs. Luckily for us, Ben loved the taste of the medicines so took them quite willingly. The only one he hated was the ‘yukky green one’ (methotrexate) so he had fizzy pop to help wash it down. As he

got older, he changed to tablets, and this was so much better.

Ben had his central line fitted, which he called ‘Wilbur’, within four weeks of diagnosis. I explained that Wilbur would help put special medicine inside him but that he wasn’t to fiddle with Wilbur. A few days later, I went into the bathroom and to my horror, noticed blood all over the floor. Ben said he had taken Wilbur’s hat off to see what was inside! We ended up in hospital that day with our first line infection.

The initial steroids were the hardest part of his treatment. They changed Ben

into an emotional, angry, indecisive, and sometimes violent, depressed and chunky boy. I struggled to get clothes to fit him. He lost the use of his legs and would shuffle along on his bum. We would spend hours going through all the food we had in cupboards, fridge and freezer as he just didn’t know what he wanted to eat. Midnight mushy pea sandwiches, 22 boiled eggs with toast soldiers, endless bowls of pasta and hot dog sausages became the norm for us. However, after the initial induction phase, his personality did return slowly and he only became a ‘Dex Monster’ for about a week out of four from then on.

Midnight munchiesMelanie Allen, mother of Ben who was diagnosed with acute lymphoblastic leukaemia (ALL) in 2011, talks about her family’s experience of chemotherapy.

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Che

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Bra

in

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Cai

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Ann

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Enjoying a family Holiday

Continued on page 2

Winter 2014 Issue 65: Chemotherapy

Midnight munchies…” Continued from page 1

Contact Issue 65: Chemotherapy

2

Contact is a free, quarterly magazine for families of children and young people with cancer. Contact aims to reduce the sense of isolation many families feel following a diagnosis of childhood cancer.

Contact is produced by the CCLG in collaboration with CCPA.

The Children’s Cancer and Leukaemia Group aims to improve the management of children with cancer and advance the knowledge and study of childhood malignancy.

The Childhood Cancer Parents Alliance is a parent-run organisation with the common aim of working together to support children and young adults with cancer and their families.

Editorial Board:

Managing Editor – Ashley Gamble Editor – Claire Shinfield Medical Adviser – Dr Martin English Medical Adviser – Dr Bob Phillips Jenny Baston – Nurse, Leeds Jane Cope – Nurse, Cardiff Mike Francis – Parent, York Katherine Greenshields – Survivor, London Rachel Hollis – Nurse, Leeds Anthea Martin – Survivor, London Rachael Olley – Parent, CCPA Gayle Routledge – Parent, Stafford Patricia Smith – Parent, Ireland Gill Thaxter – Parent, Coulsdon Paul Twocock – CLIC Sargent, London

Contact magazine was founded in 1998 by The Lisa Thaxter Trust and CCLG.

Contact address:CCLG, 3rd Floor Bosworth House, 9 Princess Road West, Leicester LE1 6TH.Tel: 0116 249 4460 Fax: 0116 249 4470 Email: [email protected] Charity number: 286669The contents of Contact are the copyright of the publishers. Articles may be reprinted without charge provided that credit is given to Contact magazine.A copy of any reprinted article should be sent to the editor at the address above. Please let us know your thoughts and feedback about Contact by emailing [email protected]

www.cclg.org.uk

@CCLG_UK

Editor’s note... Can you imagine a world without chemotherapy? It doesn’t bear thinking about. For most children and adults diagnosed with cancer, chemotherapy forms an essential part of their treatment

plan and it is easy to forget how lucky we are to have these life-saving anti-cancer drugs so readily available.

Ongoing research into new ways of using chemotherapy making it even more effective is an exciting area of development. Personalised therapy and injecting drugs directly onto the tumour are just some examples of progress. This is all happening now through clinical trials and research studies (see pgs 6, 7 and 10).

However, chemotherapy can also damage healthy cells causing a range of side effects. It is now recognised that ‘chemo brain’ does exist (pg 4) and this issue offers some practical tips on coping with side effects from treatment (pg 10).

The reality is that families are coping with these side effects every day and Ben’s story highlights the difficulties faced by many. Complementary therapies can be effective way of helping both you and your child cope during treatment by helping to relax, de-stress and sleep better (pgs 8-9).

To be able to kill cancer cells by using chemotherapy drugs is nothing short of a miracle!

Claire Shinfield Email: [email protected]

his personality did return slowly and he only became a ‘Dex Monster’ for about one week out of four from then on.

Ben didn’t lose his hair until about 18 weeks into treatment but he wasn’t bothered at all. When people asked where his hair had gone, he said it had gone on holiday but would be back in time for Christmas. His dad affectionately nicknamed him ‘Baldy Bob’ and to this day still calls him that.

Chemotherapy side effects meant that his mobility was impaired, he was sick quite a lot and the vincristine gave him really aching limbs and joints as well as stomach cramps and diarrhoea. At first, I just wanted to keep him in a bubble at home, but then I realised that we had three more years of living with this hellish disease, and decided that we had to carry on our lives as normally as we possibly could, without putting him at

risk. Our family and friends were really supportive and would do anything to help out, from making meals for us to looking after Chloe, Ben’s older sister.

Ben returned to school within a few months of diagnosis and I was kept informed of any illnesses or disease going around. Even with little or no neutrophils he still went, and I feel it was important for him to be just like the other kids. He had some fantastic friends who always looked after him, and the teachers allowed him to take packed lunches and have school dinners when he was on steroids, and also let him sleep in class if he was tired. He managed to get the highest marks in all of his Year 2 SATS and he had two ‘Goodbye Wilbur’ parties at the end of treatment.

We are now six months off treatment, and although his diagnosis feels like a lifetime ago, when we go back to clinic

for 6-weekly check-ups, it’s like being transported back to the beginning of treatment. The fear never leaves you. Due to excess weight, he is not as fit or mobile as his peers but we are working on that, and hopefully as he is still young, he won’t remember too much about the harshness of chemotherapy.

It’s not been all bad though as we have met so many wonderful people during our cancer journey, and have had some lovely family experiences that have helped us to grin and bear the side effects of daily, weekly and monthly chemotherapy. We are so grateful to the medical staff at Alder Hey, as we know he wouldn’t be here today without them.”

Splashing about in the sunshine

3

Preventing cancer

Contact’s Medical Adviser, Dr Martin English writes...

September was Childhood Cancer Awareness month, and it has been very prominent in the

news. At the beginning of October, I was excited to hear that the first baby has been born after a successful uterus transplant. Early steps, but it may allow some young women whose wombs were damaged by disease or treatment for cancer in childhood to have children themselves.

Unfortunately, the situation where a little boy’s parents disagreed with the doctors treating him for medulloblastoma (a malignant brain tumour) escalated to something nobody wanted and ended up with them being arrested in Spain and kept in custody away from him. Sometimes everybody tries to do the right thing but they don’t reach the outcome they want. This did raise the profile of proton beam therapy as a possible treatment for childhood cancer. UK children have got access to this where it is most likely to be of benefit and about 100 children a year are sent abroad with their families by the NHS for this treatment. We are very much looking forward to 2018 when proton beam therapy will be available in the UK. In the meantime, CCLG has produced a very helpful guide on treatment for medulloblastoma on the news section of the CCLG website.

Further information aimed at children with brain tumours has been produced in cartoon format by the Brain Tumour Charity. ‘Jake’ is an 8-year-old boy with a brain tumour who explains about tumours and treatment to other children. It was launched by Mark Silk, the voice of Scooby Doo, at Birmingham Children’s Hospital on 2 October.

Researcher Professor Mel Greaves also

caused some controversy when he

was reported as saying the focus for

cancer should be on prevention, rather

than treatment. However, when you

read everything he was suggesting, it

is perfectly sensible to stop something

from happening in the first place, rather

than spending more money and effort

treating it after it does. This makes sense

for adult cancers, however, most cancer

affecting children and young people

can’t be prevented by public health

measures such as stopping smoking.

Or can it? We have already seen the

introduction of the HPV vaccine for

schoolgirls that should dramatically drop

death and disability from cervical cancer

over the next 20 years.

Professor Greaves’ work has included

characterising the origin of the

commonest form of leukaemia in

children and identifying that the genetic

abnormality happens more commonly

than we think when we look at blood

spots from newborn babies. Something

goes wrong later. Can we identify what

it is and stop it with an immunisation or

something else? There’s a challenge for

future scientists! In the meantime, if you

want to know more about Prof Greaves’

work, Anthea Martin from CRUK has

written a fascinating blog about it which

is available on the CRUK website.

Dr Martin English is a Consultant

Paediatric Oncologist at Birmingham

Children’s Hospital and is a

CCLG member.

News in briefCCLG plays part in European children’s cancer planAt a recent professional conference in Brussels, 31 countries including the UK committed to a strategic undertaking for a long-term European Paediatric Cancer Plan for better care and research for children and adolescents with cancer. It will help to increase the cure rate in poor prognosis cancers, to remove inequalities in childhood cancer care across Europe and to improve the quality of life of childhood cancer survivors.

UK proton beam centres Proton beam therapy to treat children with brain cancer will be available in the UK by 2018, NHS experts say. Each case would be considered on individual merit as factors determining whether proton beam therapy offers advantages over traditional radiotherapy are complex.

New imaging technique for neuroblastomaA new trial launched at The Royal Marsden and University College London could revolutionise how children with neuroblastoma are diagnosed using a new type of scan which gives a more accurate picture of where the neuroblastoma has grown or spread.

Take part in a research study!Dr Carmen Soto, a researcher at University of Leicester, is interested in finding out how families look after a central line or portacath, and the difficulties of keeping it clean and avoiding infections. If you are interested in taking part, then please contact Dr Soto by e-mail ([email protected]) or telephone 0116 252 5431.


We know that some treatments to the brain can potentially cause long-term damage,

but what about ‘normal’ chemotherapy given for diseases which are nothing to do with the brain? Very little research has been done in this area, although people who have been treated for cancer can complain of ‘chemo brain’ in later years – a feeling of mental fog, or not being able to think as clearly as before.

Our study focused on people, aged 16-50 who were treated with standard dose chemotherapy for different tumour types that didn’t affect the brain. We compared their memory, attention and other cognitive functions with participants from the general public who were matched on age, gender, and education. We found that young people treated for cancer (on

average 2.5 years off treatment) did less well in tests of long-term memory and spatial awareness, and were less good at switching between tasks than the general population.

Former patients who had been treated for germ cell tumours and Hodgkin’s lymphoma had a slightly lower performance compared to other chemotherapy-treated groups. Depression, anxiety, and fatigue were measured and although they were generally higher in former patients than in matched controls, they had very little effect on the test results. In a smaller group of patients, we also carried out specific memory tests before and 24 hours after the first dose of chemotherapy. We found that patients were similar to non-patients before treatment, but were less able to store new information after receiving chemotherapy. In other words, chemotherapy had a significant effect on memory very soon after it was given.

We don’t yet know how generalizable the results from this small pilot study will be, or if what we found in young adults will also be true for children who have chemotherapy. Some of the differences we found may

have been due to things other than chemotherapy, such as time away

from school or college during treatment. Our results suggest

that more research needs to be done to understand how chemotherapy, on its own, affects

memory and learning. Ultimately, the goal of our research is to work out whether targeted memory

training, educational and social interventions, or drug treatments can reduce the effects of any treatment-related cognitive

damage.”


Oana Lindner, a researcher at the University of Manchester has been addressing the question of whether standard chemotherapy has any effect on young brains and discusses her latest findings.

‘Chemo brain’ does exist

4

Lily’s storyLily Anderson, 17, from Suffolk, was diagnosed with Hodgkin’s lymphoma when she was 14 years old. She underwent chemotherapy, radiotherapy and a stem cell transplant and is now in remission.

“I finished treatment a few months after my 16th birthday and tried to go back to sixth form. I definitely noticed a difference. It felt like my brain had become exhausted and more difficult to use. My head was always fuzzy, and my memory and concentration were awful. I couldn’t focus on anything for more than half an hour and trying to learn new things was very difficult. It made it almost impossible for me to continue with my school work.

“When I was younger, pre-cancer, I was an A/A* student, and picked up things very easily. I breezed through SATS and loved challenging myself. It’s difficult going from having such a bright, alive mind to having one that’s sluggish and disconnected.”

Nigel Revell, Director of Education and Advocacy at Teenage Cancer Trust said: “These findings confirm what we have long suspected - that chemotherapy can impact young people who have gone through the treatment process and have returned back to their studies but are finding it harder to adapt, due to memory loss and lack of concentration span.”

“

5

Helping your child to eatEvelyn Ward, Senior Specialist Paediatric Oncology/Haematology Dietitian at Leeds Children’s Hospital and CCLG member, suggests practical ways in which parents can help their child to eat.

During your child’s treatment there will often be times when their appetite is not so good.

This will most likely be due to the side effects of their treatment but it may also be due to anxiety about their treatment or hospital stay. They may well have experienced a poor appetite and weight loss prior to their diagnosis.

Nutrition is important as the better nourished your child is, the better they will be able to fight infections, tolerate their therapy and their body will be able to rebuild and repair healthy tissues that have been damaged by chemotherapy. It is also important for them to grow and develop during their treatment.

Ideally, your child should be encouraged to eat a variety of foods to ensure a good balanced diet but this is not always possible. If your child is struggling to achieve an adequate nutritional intake, your dietitian may recommend some nutritional support with supplements, tube feeding or in some cases intravenous feeding.

It is natural for families to worry about their child’s eating before, during and after treatment. For some families, food can become a great cause of stress and anxiety. The following are a few tips on

how to help you and your child reduce some of the stress around mealtimes and improve their nutritional intake.

General advice

• Try small meals and snacks rather than three big meals a day

• Take advantage of when your child says they are hungry even if it is not at a set mealtime

• Watch the timing of drinks - do not offer them a large drink just before meals as this may fill them up and reduce their appetite for food

• If their appetite is poor, use energy-dense foods such as sauces and cheese and avoid filling them up on low energy, bulky foods

• Keep a supply of quick ready meals which are easy to make for times when your child says they are hungry

Mealtime tips

• Try not to make mealtimes a battleground by limiting them to 20 minutes as it is unlikely your child will eat any more after this time

• Give lots of praise on what they have managed to eat and do not make a big issue on what they haven’t managed to eat

• Try to eat at the same time as your child

• Do not put too much food on their plate

• Encourage them to be involved with choosing and preparing food

Making food fun!

• Involve your child in helping to make simple meals/snacks e.g. pizza, milkshakes, smoothies, cakes, biscuits

• Encourage playing with food and messy food play for toddlers

• Picnic both indoor and outdoor

• Invite a friend or soft toy to tea

• Pretend to have a restaurant/café at home

• Let them eat with their peer group whenever possible e.g. nursery, school lunch, friends

• Think about a reward scheme - sticker chart, special treat or visit

If your child has a poor appetite …

The following tips can help to increase their protein and calorie intake:

• Use full-fat milk and dairy products

• Add extra butter or margarine to food e.g. bread, toast, teacakes, crumpets and try spreading on flatbreads or chapatti

• Add extra cheeses to pizza, pasta, sauces, baked beans, tinned spaghetti and soups

• Spread butter or cheese on plain biscuits and crackers

• Add cream or ice cream to desserts or serve with custard

• Add cream to porridge, soups and puddings

• Add mayonnaise to sandwiches, jacket potato fillings and salads

Watch Evelyn’s film from the CCLG Family Day on our YouTube channel.

5Contact Issue 65: Chemotherapy

For further information on helping your child to eat and specific nutrition-related side effects of treatment, you can order our free ‘Helping your child to eat’ booklet or download from the CCLG website.


What is chemotherapy?

We use the word chemotherapy to describe the drugs used to kill cancer cells. These can be taken as tablets, liquid, or given by injections into the blood, spinal fluid or muscle. The drugs are carried in the blood and can reach cancer cells all over the body.

How does it work?

Chemotherapy damages any cell it enters and this is why we see side effects which are common. Tumour cells are usually more sensitive to this damage than the rest of the cells in the body, because they are actively dividing (making copies of themselves).

We use this difference to gradually reduce the number of tumour cells with each block, or ‘cycle’ of chemotherapy, while allowing the person’s normal cells to recover fully.

Some cells in the body are particularly sensitive to chemotherapy, because they are also dividing rapidly. Generally, these are cells of the following:

• the immune system – which fight infection from bacteria and viruses

• the lining cells of the mouth and gut - these cells have to constantly be replaced when food rubs the surface of the gut away.

• Hair follicles (roots) - which is why hair very often falls out with chemotherapy.

Some cells such as those that make up the heart muscle are particularly sensitive to certain types of chemotherapy, and this may cause specific problems later. It is important to monitor heart function closely whenever

these drugs are used to avoid these

problems in later life.

How is it given?

Children usually have a combination of

chemotherapy drugs. The number they

have will depend on the type of cancer

or leukaemia they have. It has to be

planned carefully and is usually given

as a series of sessions of treatment. A

session of chemotherapy and the rest

period is known as a cycle of treatment.

A series of cycles make up a course of

treatment. Sometimes, high doses of the

drugs are given intensively over a short

period of time, or they may be given as

lower doses over a longer period.

Intravenously (through the vein) is

the most common way of giving

chemotherapy, either through a central

line, implantable port or PICC line. The

drugs are usually diluted into a bag of

liquid such as salt water (saline) and

given as a drip (infusion) through the

line.

Are there any side effects?

Chemotherapy drugs can cause

unpleasant side effects. However, these

are mostly temporary and there are

often ways of controlling or reducing

them. Some common short-term

side effects are tiredness, bruising or

bleeding, feeling sick, not wanting to

eat, diarrhoea or constipation, sore

mouth, taste changes, hair loss and

some children may experience some

behaviour changes such as anxiety or

mood swings.

Different children will be affected by

chemotherapy in different ways and

your child may not have all of the side

effects listed here.

Where did chemotherapy come from?

Many chemotherapy drugs were

originally extracted from plants. They

were probably made by the plants to

discourage animals from eating them,

and it is not surprising that

many chemotherapy drugs

cause sickness and vomiting.

These side effects can be

effectively treated using

anti-emetic (anti-sickness)

medications.

So, what’s new?

Newer chemotherapy drugs are

aimed at more precise targets,

and some will act on a single

protein or enzyme in the body,

with fewer side effects. It is

6

Dr Steve Lowis, Consultant Paediatric Oncologist at Bristol Children’s Hospital and CCLG member, explains what chemotherapy is and talks about a new way of giving chemotherapy to treat brain tumours.

Back to Basics

What is chemotherapy?

Chemotherapy pump


hoped that, as we characterise different cancers more precisely, we can begin to use these drugs more effectively, to get rid of the cancer cells without damaging normal ones.

New ways of delivering chemotherapy

One way of making chemotherapy more effective is to make sure it reaches the tumour effectively. There are several ways that this can be done, and in recent years, technological advances have made this much more practical.

New versions of old drugs

Pharmaceutical companies have managed to change the structure of some of their medications and make the drug more effective, or to make it target the tumour more effectively. Examples are the drug PEG-asparaginase, used in leukaemia treatment, and liposomal daunorubicin and doxorubicin. Other drugs used in oncology have also benefited from changes such as this – for example, G-CSF and amphotericin, used to encourage recovery after chemotherapy or to treat fungal infection.

New ways to deliver old drugs

Giving chemotherapy straight into the tumour may increase the effectiveness of some drugs. Drugs have been given straight into the artery supplying blood to some tumours, such as osteosarcoma and retinoblastoma. Although this may improve the effect of chemotherapy, it is quite hazardous, and usually reserved

Ground-breaking treatment for brain tumoursThe neuro-oncology team in Bristol have been developing Convection Enhanced Delivery (CED) for more than ten years, building on treatments for Parkinson’s disease and other movement disorders.

Using very precise imaging systems, a map of the whole brain, the tumour, and the blood vessels of the brain, is linked to a surgical robot. Very fine catheters, less than the thickness of a hair, are inserted from the surface of the skull directly into the brain tumour. A robot is used because it allows the pathway to be extremely precise, avoiding blood vessels, and places the tip of the catheter into position with less than 1mm of error.

Up to eight catheters can be positioned for each patient. Each is connected to special filters, to prevent infection, and then to a ‘port’ which is used to deliver treatment.

When it is time to begin treatment, the chemotherapy is connected directly to the port and infused slowly, until the tumour fluid is completely replaced by chemotherapy. This may take several days, although the patient is awake, and usually shows little sign of any change. Once the infusion is complete, the port is

disconnected, and after a period of time, the patient can be discharged. Repeated cycles of treatment can be given without additional operations using this technique.

It is difficult to measure precisely how much more treatment reaches the tumour using this technique, but probably between 5-10 times greater than would be seen with high-dose chemotherapy. So far, side effects have been very few.

Representation of the CED system, showing four separate catheters, in-line filters, the port and four separate delivery lines

Representation of the CED system, showing four separate catheters, in-line filters, the port and

four separate delivery lines

only for those cases where no other treatment can be given.

Direct delivery of chemotherapy into the cerebro-spinal fluid, which covers the whole brain and spinal cord, has been used for many years. Recent work in several hospitals is exploring new drugs given in this way, and new ways to deliver the drugs more effectively.

Chemotherapy is sometimes placed in the space after a brain tumour has been removed to

treat any cells which might be left behind. A more effective way of doing this is to infuse chemotherapy directly into tumours, or into the tissue around tumours, using a technique called Convection Enhanced Delivery. This requires very high-technology facilities to deliver safely, but has considerable potential, especially for delivering new drugs which may not work when given by the normal routes.

8

Research shows that 40% of cancer patients use complementary therapies. Many

find them helpful in reducing anxiety and pain and increasing emotional and physical wellbeing. They can also help people to sleep better. Some patients and carers decide to use complementary therapies to help them feel in control and give them an active and positive role in their treatment and recovery.

Complementary therapies are non-invasive, safe and gentle, and are used alongside, or integrated with, conventional medical treatment. They do not treat or prevent cancer, but can help to manage the side effects and symptoms associated with the disease and its treatment.

Complementary therapists aim to take what is called a ‘holistic approach’ to treatment. This means they consider the person as a whole, taking into account their physical, emotional, spiritual and social wellbeing.

Complementary therapies are effective because they trigger the release of feel-good hormones in the body including oxytocin. This release is the reason why a therapy session, such as a massage, will lift the mood and promote a feeling of calmness and contentment. As levels of these feel-good hormones increase, so levels of the stress hormone cortisol are reduced.

Reflexology

This works on the premise that the whole body is mapped out on the reflex areas of the hands and feet. The therapist applies gentle pressure to these reflex points. This is believed

to release congestion, increase

energy flow and promote homeostasis: a constant and stable internal

environment.

Massage

This is the use of gentle, relaxing and rhythmic therapeutic touch techniques to manipulate the soft tissues of all or part of the body. It is usually performed using a medium such as a vegetable oil or cream. Massage can help to reduce anxiety and pain intensity, assist relaxation and promote a feeling of

overall wellbeing.

Aromatherapy

This is the therapeutic use of essential oils derived from plants. These oils can be blended with a vegetable oil and used for massage, or for inhalation in a vapouriser or personal inhaler. Appropriate oils can be selected to help with a range of symptoms including nausea, loss of appetite, insomnia and anxiety.

Assuming the practitioner is qualified and experienced, and the medical

team is in full support, cancer patients and their carers may experience many positive benefits from using complementary therapies to enhance and support their cancer treatment.

Relaxation

Mind-body therapies are based on the idea that what we think and feel affects our bodies and sense of wellbeing. Simple breathing exercises can help reduce stress and anxiety and relaxation techniques can be learned from books, CDs or through online apps. Visualisation is a technique where we can create images in our mind during relaxation such as lying on a sunny beach or lying somewhere peaceful. Using your imagination in this way can help to reduce stress and some side effects of treatment. These therapies are particularly easy to use with children. For family members, meditation is a form of deeper relaxation and concentration which can help to reduce anxiety and stress levels.

8

Caroline Davies, Complementary Therapies Coordinator at Shooting Star Chase Children’s Hospice Care in Surrey, explores the wide range of potential benefits of using complementary therapies while undergoing treatment for cancer.

Can complementary therapies help you and your child?



Hypnotherapy Joanne Evans talks about how hypnotherapy helped her 8-year-old son Cai to overcome a phobia of needles while undergoing chemotherapy for a brain tumour.

After spending three weeks in hospital following the removal of a brain tumour

(medulloblastoma), Cai needed a portacath inserted ready for chemotherapy. Cai decided he’d had enough of needles. Having his port accessed, finger pricks and cannulas became a stressful battle, with Cai usually having to be restrained to have the procedures. We struggled with Cai for several weeks, with him becoming increasingly distressed and often waking in tears, dreading his next chemo session or blood test.

After one such session, it was suggested that hypnotherapy might help with Cai’s anxiety. I discussed hypnotherapy with a paediatric psychologist who sent me examples of relaxation scripts to help Cai to relax before and during procedures. I adapted the scripts for Cai and he soon began to ask me to do ‘relaxy place’ with him, usually at bedtime. We created a

special imaginary place for Cai – a magic garden where he can go to feel happy, calm, relaxed and safe, and where he can switch off from the real world.

I then searched online for local hypnotherapists and chose one that had experience of dealing with anxiety in children. Cai began to have weekly sessions at home – the first session involved Cai creating his own safe place in a sand tray with various toys and props to imagine when he needs to relax.

The hypnotherapist asked Cai to imagine himself at the hospital playing and having fun, and created an imaginary friend with Cai who is brave and able to help him to conquer his fears and talk him through procedures. She encourages Cai to draw and create characters and scenes which she then uses in the hypnotherapy sessions and relaxation scenarios.

Within a couple of weeks, Cai’s attitude towards needles began to change. He became more willing to have his port accessed and no longer required his dad to come home from work to help restrain him. The anxiety prior to procedures also lessened.

Cai’s fear of needles hasn’t disappeared but the anxiety has definitely decreased. He now also realises that the anticipation is far worse than the actual procedure and tries to relax rather than let the anxiety build up. Cai still sees the hypnotherapist every fortnight to help keep on top of the anxiety and to give him ‘time out’ just to relax and to escape from reality for an hour.

Energy healing Kate Beddow, Energy Teacher and Family Healer, explains the benefits of Reiki.

Energy healing, (the most widely known form of which is Reiki) is gentle enough to treat everyone from babies to the elderly and the advantage is that it benefits not only our physical pain but it can also help to heal emotional pain.

Energy healing is an ancient technique which involves the therapist placing their hands gently on, or over, the patient and channeling energy through their own body and into that of the person being treated. It is a sort of natural recharging of our batteries and consequently our body then has all the energy it needs to heal itself and deal with any upsets that are depleting it, or

have depleted it in the past. In addition to the physical and emotional benefits, energy healing is also incredibly relaxing and helps many people sleep if they have been struggling. For many people, relaxation and help sleeping are the most precious gifts during times of anxiety and worry.

Perhaps the most valuable benefit of this treatment though is that it is calming. When a child is upset or distressed the ability to placate them and reassure them that everything is ok is priceless. As a parent myself, I know how important it is to feel like you are able do something practical to help your child, and when another injection

is imminent or the dreaded lumbar puncture draws near simply hugging your child or holding their hand with the addition of a little healing energy is pure magic!

Everyone can learn energy healing. Whether you choose to train in Reiki or another energy healing technique you will then have the ability to treat your child whenever they need you. I encourage you to find out more about this ancient, natural, incredibly gentle healing technique, it will change your life.

www.katebeddow.co.uk

Watch Kate’s film from the CCLG Family Day on our YouTube channel.

Cai

1010


Dawn Forbes, Education Sister in Oncology/Haematology at Birmingham Children’s Hospital and CCLG member, explains how some of the best tips on coping with the side effects of chemo can come from other parents in the same situation.

Coping with side effects

Wake-up call

Life changes when a child is diagnosed with cancer and family routine is turned upside

down. Parents and children are faced with putting their lives in the hands of professionals and, not surprisingly, find the whole experience daunting. Hospital staff provide parents with as much written and verbal information as possible throughout this journey, as well as comfort and reassurance. But it can be difficult to retain so much information at such a stressful time in life.

Sometimes, the best advice comes from fellow parents who truly know and understand the difficulties associated with cancer treatment. Some of the following tips have kindly come from current parents who are being treated at Birmingham Children’s Hospital and might be useful for you when you have a child undergoing chemotherapy.

Fatigue

Ensure a bedtime routine for everyone in the family. This will help maximise sleep and much needed rest. If possible, sleep when your child sleeps. Make sure that you eat well. Being adequately nourished will give you the much needed energy to cope with the day’s events.

Home life

Having a routine is key (eg. bed times, meal times, bath times). Keep a diary and take the positives from every day. This will prove to be a good point of reference during the low times. Try to keep a positive outlook on hospital life as a happy parent makes a happy child.

Don’t use hospital staff as a threat to your child as this can have a future negative impact on your child. Ask for help (from friends/family/neighbours), don’t suffer in silence. You will find that many people want to help you, but won’t know what to do or how to ask. Make time for other siblings. Have a bag packed with essentials for a 48-hour hospital stay as this will help to avoid panic when you need to leave quickly for a visit to A&E.

Side effects

Skin care

Use regular sun cream and wear hats/sun glasses/long-sleeved clothing as skin can be very sensitive to sunlight as a result of some medications. Use a moisturiser on dry skin and massage really helps to relax your child. Use contiwipes on sore bottoms rather than toilet paper.

Mouth

Brush your child’s teeth at least twice a day, after meals and before bedtime. Use mouthwashes if there are signs of mouth sores. Difflam spray can be good to use before eating.

Hair loss

Parents tend to be worse than children about this side effect, but don’t worry as your child is beautiful!

Loss of appetite

Nasogastric tubes (feeding tubes) are scary but can actually be a relief. The

tubes help with not just food, but fluids and medications. Cooled boiled water through a nasogastric tube can help with hydration.

Joint weakness

Source a wheel chair or pushchair (ask the local authority, mobility centres or a community nurse).

Avoiding infection

Try to avoid people who are ill and busy places. Ensure that your child’s central line dressing is changed as directed and look for signs of infection. Wear slippers/socks at home and in hospital. Have hand washes by the bathroom and front door and educate your visitors! Communicate with schools regarding peer illnesses.

Isolation in hospital

Pack lots of things to do such as crafts, books, magazines. Invest in an IPad! Pack for longer than you anticipate being in hospital. Utilise the volunteers, play specialists and facilitators to give you a break.

I am always in awe of parents and children who quickly adapt to their diagnosis and how they come to accept and appreciate the help and care we are privileged to be able to provide at what is a very unpleasant time in their lives. Hopefully, this article will provide some tips that benefit both you and your child during their treatment.

Washing hands


Contact archive

www.cclg.org.uk/contact/archive 11

We talk to Gareth who is a senior lecturer at the Northern Institute of Cancer Research in Newcastle and is Chair of the CCLG Pharmacology Group. His team runs trials to learn more about how chemotherapy drugs work on patients.

One reason to research drugsAlthough survival rates for childhood cancer have improved, there are relatively few new ‘targeted’ drugs available for use in paediatrics. We still rely on older drugs, which are relatively non-selective for tumour cells and can have serious side effects. Personalised therapy is an active area of research which can help lessen side effects while maintaining response rates. There are some exciting developments in this area. As cancer can vary between patients, it makes perfect sense that treatment should be tailored specifically to the individual needs.

One message to familiesHaving worked in cancer clinical trials for over 15 years, I know that studies are unlikely to be successful without commitment from patients and families. As many trials aim to improve the way that we dose drugs in the future, there will often be no direct benefit in agreeing

to participate so the level of altruism shown by families is something that I find incredibly heartening and inspiring. My message would simply be to say a big thank you to all children and families who have participated in clinical trials which are essential to the improvement of future response rates and outcome.

One proud moment In 2004, our current research laboratories in Newcastle were opened by Sir Bobby Robson at Newcastle University. I talked about our group’s research with Sir Bobby, one of the most genuine and inspiring people that I have ever met. Not only a legend in the world of football, but somebody who was passionate about supporting cancer research in the North East.

One favourite filmCinema Paradiso - a beautiful film about growing up and a nostalgic look at the effect of the cinema on a young Italian boy, at a time when going to the

movies meant more than giant buckets of popcorn and 10-screen multiplex theatres. A true classic!

One final thoughtA basic philosophy in life is to accept new challenges and give everything your all. Better to fail at something having given it your best shot than to not have tried at all. Research is certainly not always a bed of roses and there are frustrations and failures that go hand in hand with the successes, but we have to strive to make further advances.

I was recently contacted by an ex-patient from one of our clinical trials over 10 years ago. She is now taking her A Levels and thinking about a career in scientific research so she spent a day with us in the labs. It really brought home to me why I do the job that I do and the importance of working hard to improve the way that we treat children with cancer.

The wide variety of articles published during the year in Contact adds up to a valuable and informative reference archive. If you would like any back issues, please contact the Editor (address page 2).

Details of key articles in previous editions are listed on the web at www.cclg.org.uk

Previous themes:

Achievement Issue no: 57 / December 2012

Awareness Issue no: 64 / September 2014

Best of Contact March 2011

Blood Issue no: 63 / June 2014

Body Image Issue no: 31 / June 2006

Celebration Issue no: 50 / March 2011

Coping Strategies Issue no: 37 / December 2007

Diagnosis Issue no: 47 / June 2010

Emotions Issue no: 43 / June 2009

Employment Issue no: 42 / March 2009

Empowerment Issue no: 53 / December 2011

Family and Friends Issue no: 46 / March 2010

Good Ideas Issue no: 48 / September 2010

Identity Issue no: 52 / September 2011

Isolation Issue no: 51 / June 2011

Media and Communication Issue no: 58 / March 2013

Moving on Issue no: 62 / March 2014

Moving on and Changes Issue no: 41 / December 2008

Normality Issue no: 55 / June 2012

Networking Issue no: 38 / March 2008

Nutrition Issue no: 39 / June 2008

Overcoming Challenges Issue no: 61 / Winter 2013

Parents and Carers Issue no: 59 / June 2013

Play/Enjoyment Issue no: 35 / June 2007

Progress Issue no: 60 / September 2013

Radiotherapy Issue no: 40 / September 2008

Rehabilitation Issue no: 45 / December 2009

Relapse and Remission Issue no: 36 / September 2007

Support Networks Issue no: 56 / September 2012

Supportive Care Issue no: 33 / December 2006

Surgery Issue no: 44 / September 2009

Survivors Issue no: 34 / March 2007

Transition Issue no: 49 / December 2010

Transplantation Issue no: 32 / September 2006

Treatment Issue no: 54 / March 2012

One on One......with Dr Gareth Veal

Dr Gareth Veal

12Children’s Cancer and Leukaemia Group - www.childcancer.org.uk/contact

Sometimes when I tell people I am a pharmacist, their response is “so you count tablets and stick

labels on bottles”. But we no longer spend all our time in a dispensary as our in-depth knowledge of medicines has meant our role has expanded and changed over the years. When working in the dispensary, I do count out tablets and stick labels on bottles but this is only one small aspect of my varied role.

I work within a team of pharmacists and day to day our roles vary so no two days are ever the same. Some days I work in the pharmacy aseptic unit where we prepare the chemotherapy, parenteral nutrition and some other medicines that are given intravenously (into a vein). Some mornings, I can be found on the wards checking that each medicine is prescribed correctly, at the correct dose, by the correct route and ensuring that a supply is available on the ward for that patient.

It is really important that I get an accurate list of medicines from each new patient admitted to the ward. This involves documenting each medicine a patient is currently taking or has recently stopped and includes not just oral medicines but patches, inhalers, creams, ointments, ear/eye drops, injections, supplements, herbal and complementary medicines, plus any other medicine that may have been bought over the counter at a community pharmacy. This information may come from a parent/patient/GP, may involve checking the patients’ own drugs that they have brought in to hospital, from the list of medicines they have been discharged with, or combination of all these sources.

This is one of the reasons why patients are asked to bring their own medicines into hospital with them at each visit. It also means that the patient’s medicines

are available instantly and that their discharge time is reduced. This helps to reduce the amount of medicines wasted. A recent study has estimated that around £300 million per year of medicines are wasted, so it is really important that we are all involved in reducing the amount of medicines we throw away.

For two days a week, I am responsible for coordinating the leukaemia outpatient day clinic. This involves ensuring all the chemotherapy is ordered for each patient. I know that it can be really stressful and frustrating for families waiting for their medicines and we have been working really hard to try and reduce prescription waiting times at Leeds resulting in some really positive feedback from families.

I spend a lot of time on the ward and clinic providing information to families and patients about their medicines. Feedback from parents has been really helpful in producing information leaflets for families on different oral chemotherapy medicines. One of the most rewarding aspects of my job is seeing that the information I have provided to the family/patient has made a difference and hopefully made it somewhat easier for them to manage their medicines at home safely and effectively.

There have been so many times when a parent, caregiver or patient has said “this might be a stupid question but…” when in fact the question was a very sensible and valid one. Please don’t be afraid to ask your pharmacist questions about your medicines. You might not even have a specific question and just need some help, support or advice on managing a certain aspect of the medicine at home, so don’t be afraid to approach us. Pharmacists are here to help you get the most from your medicines.

Winter 2014 Issue 65: Chemotherapy

12

Anna Kinsella, Specialist Paediatric & Adolescent Oncology Pharmacist at Leeds Children’s Hospital and CCLG member, explains what her varied role covers and suggests key questions to ask your child’s pharmacist.

Counting tablets

What questions do you ask?

• What does this medicine do?

• Why is it important that I take this medicine?

• When and how should I take it?

• How long should I take it for?

• How do I get a repeat supply of my medicines?

• What should I be aware of when taking this medicine?

side effects

taking medicines with certain foods or drinks

does the medicine require safe handling with gloves

• How should the medicine be stored?

• Where can I go for more information/ask a question?

Anna Kinsella

Next issue of Contact

Due: 1 December 2015Theme: Living with Cancer

contact - cclg...‘chemo brain’ does exist (pg 4) and this issue offers some practical tips on...

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