Support networks and cancer.

How to help your friends and family support you through cancer and how to support a mate with cancer.

Let's start at the beginning. Navigating social spheres when diagnosed with cancer is a tricky one. You may be asking: should I tell my mates and family? Should I post it on social media? Will they treat me any differently?

The simple answer to all of this is that you should only do what you feel comfortable with. On the day that I was diagnosed, I told my boyfriend and the girls that I lived with first and then I rang key family members and my best mates the next day when the tears had settled down. After that I didn't tell anyone else and let the word spread itself.

I am a strong believer in 'a problem shared is a problem halved' and I think that by telling people and talking about it is a really good way to come to terms with the problem. In my experience, ignoring it and hiding it will just cause a future breakdown making the problem bigger than it actually is. However, you must deal with it in your own way.

I didn't post my diagnosis on instagram until I got a new haircut 3 months after I was diagnosed and then I didn't make the @baldmover page until 4 months after the diagnosis. I think I did this because at first I wanted to keep some normality but then I felt that it was such a big thing to not be honest about so generally kept it light and made the separate account for close friends and family to keep them updated. I also recognised that I could give back to people on social media by sharing my experience, research and advice to others in my situation.

Receiving encouraging messages from my friends on facebook and instagram after I posted a 'f*** you cancer' picture did make me feel good even from people I barely knew so don't ever think that your message won't be appreciated. Kind messages are always welcome. I will discuss more about how to reach out to a friend with cancer further down.

How to deal with people that don't react well when you tell them.

DISCLAIMER Firstly, I want to say that I have been so so lucky to have such an amazing support network around me from friends and family and any negative comments are not about you!

Humans can be strange and you don't know what that friend/family member has been through themselves. Here are some of the strange reactions that you hopefully won't experience but it may help to be aware of:

• 'Ghosting'/ignoring you

• Over doing it and treating you like a hurt child

• Using it for their own emotional needs to get publicity/attention

• Pretending that everything's OK when it's clearly not

GHOSTING/IGNORING THEM

I found that some of my closest relations backed away completely as they just couldn't cope with it and whilst it seems like they don't care the truth is that they do care just as much as the others, they just don't know how to express it. If you have been 'ghosted' by someone then the best thing that you can do for yourself is to forgive them and let them keep their distance as the last thing you need is someone who can't cope saying the wrong thing. If you feel particularly hurt by this person, then it is probably a good idea to have an open and honest conversation about it saying that you don't need them to be any more than they were before, just to continue to be a friend.

EXCESIVE OR PATRONISING CARE

You really don't want to discourage these people because it is coming from the right place BUT I can understand the moments when you just want to say "can you please f*** off for one second, I'm on the bloody loo!!".

When you've already lost control of your life to cancer, having someone tell you what you should eat, think, do or when you should take your pills can be extremely irritating. You should probably tell them sooner rather than later that you really appreciate their constant messaging or overbearing characteristics but that you need a bit of space. Try to direct their care into practical things like driving you to the hospital or making a meal to stick in your freezer for a down day. Don't be afraid to tell them to back off if it's too much because you already have enough to deal with.

USING IT FOR THEIR OWN NEEDS

In my experience, there's not much you can do about this. Yes, it is irritating but if it's their way of dealing with it then let them. It's not harming you.

PRETENDING EVERYTHING IS OK

Some people deal with it by fluffing things up and pretending that everything is peachy. You don't want to pop their bubble too fast as it may cause a little explosion but it is good again to have an open and honest conversation if it is bothering you. Explain that that doesn't make you feel supported. Don't be afraid to tell them that your not feeling OK because for christ's sake you're going through CANCER!!

GIVE YOUR MATES A BIT OF A BREAK

At the end of the day, they all care about you, they are just showing it in an odd way. You have to remember that maybe they are struggling with their own mortality or they are mourning the death of a friend or family member from cancer. A lot of people just don't know how to deal with the stigma of cancer and so don't say anything in fear of saying something wrong.

I know it's sh*t because you are the one going through it but it is hard for them to watch their beloved sister or best mate go through something so huge and not knowing how to help.

Don't put too much pressure on your friends and expect too much so then you won't get offended when they don't react the way you want them too. How would you have reacted if it wasn't you and your best mate had been diagnosed? you shouldn't judge too harshly.

However, do watch out for yourself, you have a vile journey to go through so build up the best support network around you that you possibly can by helping them to help you.

A message to the friends and family ... How to support someone who's been diagnosed.

I think that the best advice I can give you is to just keep things normal with an extra bit of care and sensitivity. Your mate hasn't suddenly turned into this sickly being like Voldemort at platform 9 and 3/4 (the weird foetus thing).

They're still your friend that tagged you in that hilarious video from 'The Office' where Micheal is doing parkour and they want this to continue.

The main thing is to listen, be aware of how they are feeling and be respectful if they don't want to talk about it.

Here are some Dos and Don'ts that may help you to think of something to do to support a mate/family member:

DO

• Tag them in memes that they may find funny

• Pop up even if you haven't spoken to them in a while, I have reconnected with primary school friends through this and I'm so grateful for that.

• Message them every now and then asking how they are or simply saying "thinking of you". This is really important if you know they have a big day e.g. first chemo or PET scan.

• Ask if you can ring for a chat - be mindful that they may not be up for it.

• Send them a handwritten letter. Can be emotive/motivational/chatty

• Send them a small gift (gift ideas at the bottom)

• Organise fun trips together e.g. High tea in a fancy café - avoids alcohol, going to a gallery, cinema or theatre to see a show - be mindful of busy infectious places though.

• Suggest a small walk with a picnic you have brought.

• Organise a visit to their house, chilled cup of coffee just to listen or have a good laugh. But don't stay too long.

• Be yourself, relax and have a giggle. You were their friend for a reason before!!

• If they are crying a hand squeeze or a hug can go a long way. Physical touch can say more than words, try this even if they are not crying but look like they need support.

• Be a human pillow when they're sleepy

• Get your mates together to create a 'care box' with lots of gifts that they can dip into on their worst days. My sister did this for me and it made a world of difference on bad days. - Thanks Hannah!!

• Support them when/if they get a hair cut or shave their head by being there- Thanks Frankie!!

• Get their carer a gift

• Sit with them during chemo but don't expect them to talk the whole time, it gets very tiring so bring a book and some snacks.

• Offer to help out with practical things like 1. Drive them to appointments/chemo/ PET scans 2. Make them a meal that they can stick in freezer 3. Doing an hour of gardening or helping around the house 4. Offer to help with their kids if they have any

• Go along with their mad ideas like a 10mile walk after they start their new harsher chemo... thank god that went well aha.

DON'T

• Turn up unexpected - they may be feeling rough and in bed

• Message them consistently, quite difficult as there is a fine line of it being too much

• Be offended if they pie you off last minute. cancer is a rollercoaster of health and one minute you could be laughing doing the downward dog and the next you could be in hospital with a high temperature. plans change constantly and so do energy levels, just respect it if they don't feel up to it.

• Go anywhere near them if you are ill. they're neutrophils are probably quite low and they do not want your germs.

• Nag them for news maybe ask someone who is close to them for updates.

• Bail on them. For once, double standards should be applied.

What should I say to someone who's got cancer?

Try to prepare yourself and process your thoughts and feelings in your head before you meet up with your friend. This way you can focus on supporting them. At the end of the day these are just rough guidelines just try to relax and be yourself. They're not going to cut you off for saying the wrong thing but here are some suggestions to avoid:

DON'T

• Say generic thoughtless phrases like "Don't worry, you'll feel better soon", "I'm sure you'll be fine".

• Say nothing and avoid them

• Don't scare them "I know someone who had that and it was really horrible, they died."

• Offer any medical advice or tell them about the amazing benefits of some random turmeric powder or the latest health bullshit that can cure their cancer because they've probably already looked into it and it's rubbish.

• Tell them what they should be doing, eating, thinking, drinking etc.

• Tell them about your exciting life and how successful you are - unless they have asked about it

• Tell them about your summer holiday plans as its very hard to get travel insurance with cancer and can be very costly - again, unless they have asked

• Tell them about how much fun you had on a wild night out drinking, smoking and taking drugs

• Tell them how good you looked with long hair - yes it happened.

• only talk about cancer- it's SO boring

DO

• Say "I want you to know that I'm thinking about you and I hope you are doing OK, let me know if there is anything I can do."

• "I'm sorry that this has happened to you but I will be there whenever you need me".

• Share a joke and try to make them laugh - don't laugh at their expense if they haven't already or you don't know them that well

• Talk to them like you normally would, ask what they are up to today

• Give honest compliments: "love that Bald Move headscarf"

• Tell them it's OK to feel down and let them be down. Give them a hug.

• Laugh along if they crack a cancer joke

• "If you ever feel like talking I'm here to listen"

I hope this has helped some people know how to support a mate or family member and helped someone understand why their friends/ family seem unsupportive.

would love to hear your feed back

all my love

sophia xxx

Gift ideas

may be a good idea to spend time with them and see what they are struggling with and get them a really thoughtful gift. Food is always a winner and small pampering treats too.

Blanket, chocolates, donuts, cheese basket, Treatment bag (great charity https://www.treatmentbag.co.uk/), a hat, a BALD MOVE HEADSCARF (https://baldmoveinfo.wixsite.com/baldmove?fbclid=IwAR2a_mXEBDJGB3104CONeq0MKfSCFEgbZ3vFSERq_3oxtxlb3L5nPUbRvqw), a nice tea e.g. Pukka mint tea, moisturiser, face mask, comfy pyjamas, sketch book, a good book, paints and canvas, nail varnish, colouring in book for adults, dressing gown, slippers, PICC line cover, a water bottle, a funny wig (be careful not to offend).