Chemo top tips for patients by patients

Chemo top tips for patients by patients

You don’t know what you don’t know until you experience it.

Everyone is different and you may not experience the same things as us but these are things we have learned through having treatment. We wanted to share with you in the hope that this may help you.

• Always know who to contact, carry your emergency contact card or have the numbers in your phone.
• Always ask your nurse if anything is worrying you or something doesn’t feel right. Nothing is “silly”.
• Consider being taken to your chemo appointments as you may feel tired or unwell afterwards.
• Get an “in the ear digital thermometer” or one that goes on your forehead. 
• Anti-sickness medication is given to you, it can be better to take rather than waiting for symptoms to present themselves. Try ginger to help with sickness.
• Be aware that you may form associations with chemo. 
  • For example, after treatment, you may find you associate the clothing you were wearing with your treatment, so you may not want to wear clothing you are particularly fond of. Other associations can be to sounds and smells.  Don’t be afraid to talk about how you feel.  
• Wear comfy clothing that gives easy access to PICC lines and ports such as button-down fronts. Layers are good as you can also get cold. Don’t wear anything precious or your favourite perfume due to the association.

Keep a diary 

• You may find it helpful to keep a diary; this will be useful when you have your pre-chemo appointments:
  • know what is your normal, for example, what is your normal temperature at different times of the day, morning, afternoon and evening.  
  • how you are feeling every day. This will help you know if you have good or bad days, so you can plan ahead.
  • how you feel emotionally – anxious, worried, depressed, frightened, or overwhelmed. This can be common experiences. Your nurse will happily advise on this.
  • what medication you are taking and when. 
  • write down any side effects or anything you notice that isn’t normal for you. You may experience unfamiliar sensations, such as shivering, tingling or feelings of 'pins and needles' in fingers and toes after treatment. You need to let your nurse know if you do have any side effects.

• Your chair in the chemo unit should recline, ask staff how to do this if you haven’t been shown. This can be helpful especially if you feel drowsy.
• You may find it helpful to suck boiled sweets or peppermints during chemo, this can help with sickness and taste (lemon or ginger flavour are good ones).
• Eating a light breakfast or snack before chemotherapy and drinking plenty of water after will help.
• Take some snacks and something to drink with you as you may be in the unit for some time.
• Have a list of appointments to tick off as you have them.
• Chemo brain is not a myth, you may forget things, or struggle with the words that you want to say.
• Keep your medication and diary together, in a bag or box, ready to take, just in case you need to go to hospital or doctors.
• Consider having a silk pillowcase or cap. Hair follicles can become painful with or without hair loss.
• If you are given a pack of injections to do at home, ask how to use them if you aren’t told. Get them out of the fridge half an hour before giving them and do them just before you go to bed as they can make you ache. Using numbing cream before can also help.
• Keep your nails cut short as they may become fragile. Use cuticle oil every day (men as well).
• If your gums or mouth become sore you may want to use a softer bristled toothbrush and eating pineapple can help keep your mouth feeling fresh.
• Look at the charity websites for your cancer type, they are great for advice and information and the NHS, try not to use Google.
• Look after your skin, your nurse can advise you on what would be best for you.
• If you lose your hair, don’t forget to moisturise your scalp.
• Check with your team before you take anything else other than your prescribed medication as it may interfere with your prescription.