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19 May 2016
- Bring their favourite foods
Their tastes buds will probably change throughout treatment, but favourites will probably remain favourites. I would take a favourite food of each flavour type, e.g. sweet/savoury/fruity/sour, in the hope that they would crave one of them. Also, if you’re visiting during chemo; bring mints! Certain types of chemotherapy give you an strong metallic taste out of nowhere and it’s awful. Really bad. Soft mints are the best because you can spread them around your mouth in the hope of combatting it. Even the nurses carry around mints for times of desperation.
- Hug them
As with all children, physical affection will help to calm them. A hug is the best thing to do when they are upset because it literally reduces stress levels (as oxytocin is released into our bodies, which reduces heart rate and cortisol in our blood) it’s science. The child is also around a lot of medical professionals who aren’t really allowed to give hugs etc, so they are really needed from family and friends. This will also hep to combat feelings of loneliness for you both.
- Ask them how they’re really feeling and let them explain
This is really important for children, especially when all their medical decisions are made by their parents. They need to have control over some things, because they have none a lot of the time. By asking them how they feel about it and letting them explain why they feel this way, it not only allows them to become a more emotionally developed individual, but it lets you understand how to work through problems with their view in mind (which may understandably be very difficult to hear, but at least they know you’re on their side). It will also make you feel like more of a team when fighting this disease and make them feel less isolated, especially if you relate to how they’re feeling and work out how to improve their negative feelings. Note: ask them in a safe place where you know you can talk to someone straight after, as it will be difficult for you to hear from them.
I understand that this point is very similar to the last, but it is the most important thing to do. A child’s life has just been completely disrupted and so has yours. They have to listen to you tell them what treatment they need and how their life will change from now on. And thats a really impossibly difficult thing for you to do, and most children know this. They will be able to sense how devastated you are, and this might result in them not talking to you so that they don’t upset you; and this is very emotionally damaging long term. To avoid this distant relationship forming, it’s imperative that you listen to them. Try to really take it in what they’re saying and react well to it; its the most valuable knowledge you can get. This is also true for any siblings. You must just listen, without trying to force an opinion on them or complete their sentences, just sit and absorb.
- Use charity websites for first-hand advice
The fact that this is something I can advise is amazing in itself to me. When I was diagnosed, there was little to no help out there that we could easily access. Now there is a wealth of information available, the most valuable I feel being personal stories and blogs. Online medical journals are something you should avoid at all costs, whereas personal stories of hope are a very positive resource that can really help you to feel less alone and can even open up communication lines between you and people going through the same ordeal/people who have come out the other side. Even though no two cancer journeys are the same, many elements are shared and you can always find general tips and tricks to deal with these things, especially with the same chemotherapy type. There are often support line numbers on these sites, which would be really useful in times of helplessness and emptiness.
- Adapt family days out to include them/siblings
This is something that often gets pushed to the sidelines when times get really tough and chemotherapy affects your child’s abilities/immune system/appetite. However, special day activities are really important in keeping the family unit strong; especially because of the impact on the siblings, who often get far less attention and can become redundant members. This can be inexpensive, which is such an advantage due to the financial strain cancer treatment can cause, you just have to get creative with it. I’m sure there are plenty of websites and magazines about having fun family days on a budget, and these will be starting points that can be adapted to suit your child’s capabilities. Often childlike ideas are the best, such as building a duvet fort and watching Disney films in it. Although, it’s important to try and let any siblings have their own time with parents and their own time with their sick brother/sister, as they did before. Both this ‘alone time’ and having family days will help to maintain a level of ‘normality’ in the child’s life, which is so important considering everything that’s happening to them.
- Celebrate small victories
When life is really hard, it’s important to realise how much you’ve had to fight your way through. I feel that the most positive way to do this is by celebrating a win. Whether that win is getting good blood work back or making it through a whole school day, it is important to recognise it. When the world hasn’t given you much to be thankful for, be thankful for how much work you’ve all put in to making these little things happen. It’s again important to do this for siblings/parents as well to recognise the fact that it is difficult for everyone right now, and achieving more than getting out of bed is a feat in itself. Celebrations can be so simple, like a family selfie or a ‘cheers’ at the beginning of dinner.
- Keep a diary/sketchbook
This might seem a completely ridiculous thing to take up at such a time, but it really would help everyone in the immediate family (especially siblings). Writing down feelings is a really useful tool for processing your emotions, and getting them out of your head and on to paper is a proven form of therapy. This will help to stop bursts of rage in front of others, because you will be confronting your thoughts instead of ignoring them, which is psychologically damaging (especially in the long term) and causes emotions to emerge uncontrollably. A diary would also help you to keep a timeline of this time in your life, which might allow you to keep more structure and organise your time better- as you will be able to keep track of appointments etc. Alternatively, if you are not inclined to keep a diary, a sketchbook would be a good option. You don’t have to be an artist to do this at all, just doodling little comics of something funny that happened that day would be good as a mindfulness tool. This will also be really useful to see how your moods have been and whether there are any patterns you could try to ease, e.g. organising a coffee with a close friend the day before the child’s chemo bout because you know that you feel really depressed on this particular day.
- Maintain self-care
It’s so easy to ignore your own needs when a child is facing chemotherapy, because you feel that they are much worse off and that you cannot feel bad for yourself because of what they’re going through. This attitude will only help for a very short space of time. You can’t ignore how hard this is for yourself, and getting help with this is absolutely nothing to be ashamed of- would you think another parent/friend of a child having chemotherapy would be ok? Getting help is the best thing you can do for you and your child/children. This can be talking to friends/family, going to the gym to burn off some steam, or talking to a councillor online/in person (although making another set of appointments may feel like too much hassle). I would encourage taking some time for yourself at the end of the day when you’ve put the child/children to bed to practice mindfulness, which comes in plenty of forms- you simply find one that you click with naturally. Meditation might seem pointless to you, but going for a jog might seem like something you could incorporate somewhere.
- Learn to accept the post-cancer survivorThis will be the most difficult thing to do on this list. There’s a global misconception that after treatment your child will go back to their ‘old selves’, and believing in this will be very psychologically damaging for the whole family. It is a life-changing event, and it’s awful; but you can’t pretend it hasn’t happened. You will have a lot of ‘what ifs’ and these will often turn into negative thought cycles, which is exactly what happens when you mourn someone. It took me a long time to realise that we were all in mourning of the ‘pre-cancer’ me. Everyone was, we just didn’t realise it; because of the pressure to be happy that I has survived. But a new version of me was born after cancer, how could it not? After all the treatment and emotional turmoil, everyone would change; you have to to cope. And it’s crucial to accept the new version of the child, because they will try to please you by pretending to be their old selves and eventually lose who they actually are. It’s important to remember that any child would change quite a bit during the actual duration of treatment, which for me was an entire year. So, you will have to mourn, but at least understanding this will allow you to eventually stop trying to get their/your ‘old/normal’ life back. This will be a lot better for you long term, and help you realise why you’re often feeling the opposite to how you think you should, e.g. devastated instead of appreciative.