Amy Dixon shares answers to our burning questions about how to navigate the cancer journey with  loved ones. We want to know - what to say, what not to say, how to help, when to keep knocking on the door, when to give space, and whether is it ok to laugh and cry...

She also tells us about the little (and big) things that made a difference during her journey (therapies, community and how kindness counts):

I think it's important to say here that with a cancer diagnosis obviously what people say and do is with all the right intentions however when you are going through it sometimes you can feel frustrated, let down, annoyed, and angry at some people's comments and reactions. Everyone is trying to navigate the situation as best they can - whether you are the person with the diagnosis, a family friend, a best friend and so on. I hope the following helps:

What not to say … 

There are a couple of things to try not to say or do — things that I found particularly irksome:

1. The head tilt. Just don’t do it. You might not realise you are doing it but just don't. It’s maddening. It comes across as if the head tilter thinks this is your last outing before you die.
2. “I know how it feels my great aunt had it when she was 85”  I really feel for your great aunt who also had to go through it but her challenges are slightly different to one of a 40-year woman with two small children and very much pre-menopausal and with a damn good head of hair and boobs that are still acceptable to put in a skimpy bikini.
3. “That’s the good type of cancer! Or the best cancer to have.”
4. “You’ll be fine!”

5. Always acknowledge any diagnosis when you’re speaking to someone with cancer. It’s a very strange feeling when you are speaking to someone you know and they are skirting around the issue when they know. It can be as simple as, ‘I’m so sorry to hear what a shitty time you’re having’ and then move on. But acknowledgement really meant the world to me, makes you feel just a little less lonely and that people are rooting for you. 

If the person doesn't want to talk about it they’ll say thank you and move on but it might be they really do want to chat about it. Ask questions if you want to. Again if it's not appropriate then they’ll change the subject. But it's really nice to be asked how you are doing. 

What to say and ask… 

If you would like to ask questions and find out more these are safe ones to ask:

1. How are you getting on?
2. Have you finished your treatment? Where are you at in your treatment?
3. Are you feeling ok?
4. I'm here if you need…
And then just some good old  - 'WOW, good for you', 'you’re amazing' etc. I always rather enjoyed the 'so and so has told me how incredible you are being’ and ‘I’m getting my updates from so and so’. Works every time and shows you care. We’re all human at the end of the day!

How kindness counts

I am still bowled over to this day by how thoughtful people were. People I had only met a handful of times went out of their way to send a message or card/gifts.   I had amazing WhatsApp groups where they sent me incredibly encouraging messages. And pressies …. Goodness those pressies… people were unbelievable and believe you me that really, really helps! 

One friend kindly arranged for a ‘little coffee kitty’ for me. When we all lived in London (I now live in Oxfordshire) she arranged for a handful of girls to put what we would have spent on coffee seeing each other into a kitty and then at the end of my treatment she sent me that money to spend on something for myself. Just amazing. 

Another friend who had literally been through the exact same treatment six months prior arranged it so that whenever I got home from chemo on a Thursday there would be a card and then a little pressie…. It actually made me look forward to chemo sometimes!

The importance of a positive mindset

I decided at the outset to remain as positive as I could be. I think it helps I’m wired that way but I had a very strong word with myself about how I can't make this more difficult than it already is. By that I mean I wasn’t going to waste any energy on being angry or fighting it. I had to accept what was happening and take each day as it came. I'm not saying there weren’t days where I hated everyone and everything and had my moments but I was able to get myself out of those holes and carry on and focus on the positives.  

Other therapies that helped

I started seeing an acupuncturist weekly who was wise and brilliant and not only was he brilliant at acupuncture he also was hugely knowledgeable on cancer so I was able to look to him for reassurance or any questions that cropped up between my doctors appointments. Poor guy- I was like a repetitive parrot - asking him “Are you sure I’m going to be ok?!” He would clutch my hand and look me in the eye and say YES! That’s what I needed to hear weekly! He was wonderful to me. 

I went to see a healer, again I can’t describe in words how she helped me so much but she made me see my diagnosis in a way that I could accept it.  This is quite far out there (pretty sure my brother and husband rolled their eyes when I told them my theory) but it worked for me! I looked at it that my tumours were my bubbles of grief. My mother died of breast cancer, as I mentioned earlier, and also my father had died the year before nearly to the day I got diagnosed. So we worked through that together and it really helped me. She also introduced me to EFT. It’s called the Emotional Freedom Technique. I'm evangelical about it, I’ll preach to anyone that will listen to me about it. It works for everyone and everything.  In a nutshell, it shifts trauma/grief etc out of the body by tapping into your parasympathetic nervous system. I will let Nick Ortner explain it a bit better: The Tapping Solution by Nick Ortner.

So now whenever I feel a fear rising within me about recurrence or anything for that matter I just TAP, TAP, TAP! 

Support within the cancer community 

It’s been really helpful to connect with other women in my situation, those who’ve trodden the path before me and have been kind enough to pass on invaluable words and advice.  I have a group of three friends, all on the same hormone treatment and we have a WhatsApp group where we can rant about our situation which unless you’re in it it's difficult to explain to anyone else. It’s so helpful and we all really support each other and try and meet up when we can. And I know we will be friends for life.

I had tools and I am very lucky I had access to people to help me. There are amazing charities which can help support and guide you if you are a little lost and don't know where to start. It was a bit trickier for me to access these due to Covid but I have friends who have found them really helpful - Maggie’s and Future Dreams.  

Playing the cancer card 

Cancer did have its upsides…I used the cancer card for queue jumping, when I didn't want to use my Covid mask, and when late for anything which is quite a regular occurrence. I'm not going to lie I used it wherever I could. In fact, I still do…. Although annoyingly my husband and friends have wised up to this now.

The little things

You would think my appetite for shopping would have been parked at this time. Oh no! Loungewear took on a whole new meaning! I took the ‘being kind to yourself ‘to a whole new level.

One day I was laughing with my oncologist about how my spending had gotten a bit out of control and how the steroids had taken effect in more ways than he intended.  One day I came back with a brand new car. I called it the chemo car! I told my husband that I needed it as I needed to be comfortable with heated seats to and from chemo every week. Apparently overspending ‘willy nilly’ is actually a thing and a proper steroid side effect. Needless to say, he reduced my steroid dose!

I then obviously had to get quite a lot of ‘chemo cashmere’ and then anything else with a C in it that I could whack chemo or cancer in!

I brought a new handbag for chemo, obviously.