Tips on Coping
Here are some practical handy hints and ideas that might help you when caring for a child with cancer. We would love to receive your suggestions so please email us so that we can add to the list.
Sharon Dempsey, mother of Owen who had an Ependymona brain tumour
- Use computer and video games as a distraction from pain and nausea.It also helps your child play with their peers without being impeded by their illness.
- Hold activity days with your ward by hiring out a hall with soft play, bouncy castle etc. and invite only children on treatment and their siblings to lower the risk of infection. This allows fun play away from the ward and a chance to do something different with the family.
- Ask all visitors to wash their hands with antibacterial hand wash before entering the home. This really helps prevent the spread of infection.
If your child's school has special visitors such as animal welfare people, writers, artists, etc., request a home visit so that your child can also participate. We had visits from bat specialists, hedgehogs and owl owners who happily gave our son Owen some of their time and even brought along their wildlife.
Rachael Olley, mother of Connor who was diagnosed with Leukaemia
- To cope with overeating whilst on steroids, give food in smaller portions. They may still be hungry but will prevent some of the weight gain.
Have a 'Telephone Tree' so that when you need to inform family and friends of information, it can be passed from one person to the next without having to waste time informing each individual person. This will also save money on phone bills. Social networking sites are also very good for sharing information.
Gill Thaxter, mother of Lisa who was diagnosed with Osteosarcoma
- Our main problem was nausea and weight loss. Lisa threw up at the smell of toothpaste, aftershave, perfume, coffee and Macdonalds! Sounds expensive but Lisa loved smoked salmon and Chinese duck pancakes.
We bribed Lisa to eat. For every pound she gained we gave her £5. Believe me it worked!
Fiona Adams, mother of Katie who was diagnosed with Wilms tumour
- Friends cooked lots of home-made meals that were frozen and we could microwave as and when necessary, while Katie was on treatment.
- Katie was diagnosed just before Christmas and one of her friends gave her a present to open on each of the 12 days of Christmas.
- Carys was born a month early when Katie was 3 months into treatment. I appreciated a friend who was a childminder looking after Katie one day a week so I could have some time with Carys.
When Katie had her surgery I appreciated a nurse friend taking us out for lunch as she knew that this is one of the worst times ... not knowing what is happening to your little one in the operating theatre.
Danielle, whose son was diagnosed with Leukaemia
- We used little cotton-patterned fabric 'wiggly bags' when he was accessed and had a line dangling (he was only 18 months when diagnosed) and he chose which wiggly bag he wanted that day eg. Batman, astronaut, Harry Potter.
- Keep a small 'bag of tricks' ready for episodes of febrile neutropaenia, with favourite DVDs and pjs (and essentials for mum), so if you have to dash off in the middle of the night with a fever, you have something ready.
- When he was on steroids, he found watching the same films reassuring/soothing and he also liked to listen to audio books.
- Try making arts and craft things when in isolation, such as tiny puppets out of hospital gloves, swords from shiny paper and bead bracelets.
- Have a small notebook to keep all essential phone numbers etc. I also kept a record of bloods in there.
- Coping with an allergy to the numbing cream made weekly bloods difficult. We introduced choices such as 'which one of mummy's knees would you like to sit on' and also temporary tattoos. He would choose a tattoo and we'd apply it as the needle went in, distracting him.
- We also used to tell him when he had sore legs etc. from the chemo, that it was good as it was a sign that the chemo was working.
Anne Wawczczyk, mother of Ruth who was diagnosed with Lymphoma
Don't spend hours scouring the internet, there's the danger you'll fall apart! Focus on your child as a 'statistic of one' - listen to your consultant more than you surf the net.
Sue Ablett, CCLG Executive Director
- For children who are short-sighted or have lost their sight, decorated cakes can be a source of great pleasure. Simply make sure that the message or design is done in relief so that it can be felt with the fingers.
- Buy a brightly-coloured notebook and pen to match for your child which is small enough to be carried around. This is designated as the 'Happy notebook'. Encourage them to jot down something everyday that makes them laugh/smile or a joke they liked. However dark the days there is always something. It is great to look back on and can lift spirits, but it can also become a legacy for others.
- Give someone (child or adult) newly diagnosed with cancer something to look forward to. Pack up a bag of goodies with strict instructions that they are to be opened just before or after each course of chemo, or on a particularly bad day etc. They don't have to be expensive but should be beautifully wrapped, chosen specifically with the person in mind, and have a real treat factor. For older patients they are usually smellies of some sort, all designed to pamper: glittery nail polish, nice moisturiser, foot balm, or something to make bath time special.