"O" is for Others

“It takes a village”….

There’s a reason humans need their villages – we just cannot do everything alone.  As much as sometimes that would be nice!  This was particularly true for me during pregnancy into early motherhood and it is very true when living with cancer.

I have written this piece several times over because my words don’t really convey everything I want to say.  Tears well up constantly as today I am writing this coming off the back of what has to be one of the best weekends of my life and it involved our village.

A few weeks ago our friend, Hamish, sent a text to Ryan with an extremely detailed idea of holding a surf relay…we were getting close to running out of funds but everything felt overwhelming; another fundraising mission was a daunting task. 

The level of detail which Hamish went into in that text made Ryan and I feel so good – someone cared, someone understood and someone knew we couldn’t face this alone.  Someone had put ideas down and thought them through, they had come up with a plan!

Following on from that text the idea floated about but suddenly about 2 weeks ago the idea took life – Hamish, his wife Jess, and Coastguard Sumner crew took hold and ran with it. 

Today I am reflecting on a 36 hour surf relay that saw 50 surfers, some of whom I had never met, take to our village beach day and night to surf.  Families and friends manning the shore to watch, support and keep them safe.  Over $100,000.00 has been raised – far exceeding the 1 month I hoped to gain!  Jess as it turns out is a PR, fundraising wizardess who could mobilise a whole army single handed within an hour.  She also kept me strong, cried with me, held my hand and managed to get NZ’s press onto the story with one press release.  I’m not sure she or Hamish will fully grasp what they did for one little family not just financially but mentally.

I could write a whole story about this weekend but in keeping with the theme, “others” I want to acknowledge what was truly mind blowing – all the people involved.  Surfers, friends, strangers, Coastguard, local café (shout out Scarborough Fare), media, public…. I saw men (and women) cry as we talked about my cancer, the battle to fund drugs, the hysteria when we hit enough for 1 years’ drugs (I sounded like I had been winded) - others joined in the tears of joy and disbelief.  I truly saw how much people care, they really care. 

My favourite part of the whole weekend was hanging out with some very awesome people and just chatting on the beach or in the bar to people who wanted to join us and help us.

In a world that feels crazy and full of nastiness to a point where I really worry what Ruby is growing up into, I have seen such genuine kindness and generosity.  Generosity not just financially (which has been phenomenal) but giving of time, skills, emotions and hugs. 

To keep us going was their sole objective – no thanks, fame or attention wanted.  Just to help to do their bit to keep me alive, to keep Ryan with his wife and Ruby - her mum.

I am truly humbled to see so much empathy for our situation, understanding that this situation is not of our choosing; we don’t want to be doing this and we are living with this every minute of every day.  My goodness have this group of people made it fun wherever they can – surfing all day and night, it’s like Ryan’s dream come true.

Cancer is never positive and living with it sucks but I am so grateful for the positive sides I can find– the people I have met, the kindness of humans that I have seen and the experiences I have gained.  None would have happened if it wasn’t for this illness so whilst I hate what we are going through and the why we are doing all this I am so appreciative of the things I have gained.

This weekend was not the only time we have experienced such amazing kindness but it represents what we have experienced in the last few years from so many in our community and wider area.

So, to my other, Ryan – frequently he describes his home life as being like whirling around in the wake of the hurricane that is me and the cyclone that is Ruby (me of the Northern Hemisphere and she of the South).  I think this is slightly harsh but accept that the last few years have been a roller coaster; we have been married 4.5 years and for 3.5 years we have been dealing with cancer.  Since we met in 2016 we have had a baby, got married, been in the covid lockdown generation, faced cancer, dealt with unfunded medication and we are only up to 2024….

 I am beyond grateful for Ryan – not only is he a beautiful and kind human but he made me a mum, holds my hand when I am scared, gave me a home, a place to put our roots and grow as a person but he gives me wings – he lets me be me.  I can fly as high as I can but he holds the safety rope to keep me grounded.  To be in a relationship where the boundaries are invisible yet mutually respected is very freeing. 

I knew Ryan was the one when he went away for work before we lived together and he left me asleep.  He needed to take his toothpaste but when I woke he had squeezed some on my toothbrush.  How considerate is that? – something so small and insignificant yet his thoughts for what someone else needed went right down to that.  I aim daily to be that person to think of someone else’s needs daily.  I’m sure I fail constantly but I try.  It is truly the small things that matter as they show someone’s true nature and your value to them. 

Ryan though is in an impossible situation – he has to be strong for me, the one that is unwell but he is accused of being selfish if he want to talk about his feelings.  There is also a fear of not wanting to complain or talk about his own issues when there is the perception that us (cancer people) have it so much worse.

I also know that Ryan will want to protect me from his fears, his tears and inner most thoughts for fear they will upset me.  But I know his fears, I feel them too and small worries can bubble to the top very quickly; a conversation about whether we should go to out of hours if something is wrong can become a scene of tears very quickly (Ryan’s not mine!).  It’s just that never ending fear and worry that something simple will result in a stressful stay over in hospital, more tests, more results, more news…..

Who can he talk to though?  I too find that often it is easier to say “I’m good thanks, how are you?” rather than to start to explain the truth. 

What has astounded me though is how the response of others is so important.  The lift it gives me and Ryan when someone says “I’ve got your back, let’s fight this”. Just as Jess and Hamish did, it made us feel we could fight again.

Between the cancer and the drug funding we have asked a lot of our “village” but boy, have they helped in so many ways.

I hope if you ever face a difficult situation, I hope you have people around you like we do BUT I say this with so much emphasis, you do not get good people unless you treat them well yourself.  I don’t in anyway mean that you should give to expect a return – giving for the pure joy of it is the best feeling in the world.  However, showing appreciation and kindness to others is the first step to having the help of others.

I have learned to be the 1st to put my had up to help, whether that’s a dinner for someone who is sick, a babysitter during the holidays to balance work needs, a text to check in or a shoulder to cry on.  No problem is not worth listening to – it may be different to my problems but it’s no less important.

I have to temper such a positive heart felt post with some reality – not all people are kind.  We have had our share of opinions, judgement and cruel behaviour but those few individuals are drowned out by the overwhelming kindness of those whole truly mean so much.  I don’t want to dwell on the negative behaviour and I won’t allow their misery to infect our positivity but it is important to acknowledge that reality isn’t always hearts, hugs and happiness; some people are just not nice even when we are dealing with all of this.   I have learned to accept that these are their issues and as long as we conduct ourselves in a way that we know to be kind, honest, and positive we will continue to live life the best we can.

Ruby, my other and reason for being – I will fight my hardest for you and to do all I can to give you the village to support you.  Please remember that those who are genuine will shine- be one of those people always.  Give for the sake of giving and not to receive…expect nothing and overall just be you. 

Please look after Dad, you two will carry our legacy forwards for others but he will need your strength my darling. 

In the meantime, we three will always be us and behind us there will be a village but sometimes that village will need you.  I hope one day, you are their Jess 😊

N is for Nourish

“Nourish” is defined as:-

– to provide with the food or other substances necessary for growth, health and good condition

I started to write about N for nutrition but started to struggle as a) I know nothing about nutrition from a professional point of view and b) it became more about what makes me feel good than anything else!

Nourish sounds far more of a comforting and overall wellbeing word…nourishment for the body and soul! It has an element of luxury that I am all about! This is a far more in keeping way of describing how I have approached my wellbeing since being diagnosed. I don’t always follow the rules of what I “should” or “shouldn’t” do or eat but I do eat and do what nourishes me from a physical and mental perspective. What is necessary to grow, be healthy and in good condition? In this sense “or other substances” I am taking a broad interpretation of and expanding to mean basically “or other things”!

I am a firm believer in nourishing all aspects of my health from the inside out. This is definitely a piece of writing for saying yes to all the good stuff in life 😊 In other words go fill your cup!

I have recently started to really enjoy food and cooking but I find dietary advice overwhelming and often conflicting especially for someone with cancer. There is so much online and in books for someone like me who continually worries about their body weight, appearance and physic. As a post – menopausal women with cancer the advice is endless – “high protein, low carbs”, “clean eating”, “raw eating”, “avoid sugar”, “avoid dairy”, “don’t eat too much red meat”, “don’t eat too much fish”, “take supplements”, “eat fruit but not citrus”, “ but don’t be restrictive”……..(insert mind blown emoji). I actually can’t count the number of food plans I have followed or healthy eating books I have read over the years in search of the perfect balance of healthy eating but also keep weight down.

I understand for some people that very restrictive diets work (and in some instances have lead to cancer remission) but every cancer is different and every person is different so it is very hard to find situations similar to mine. Some cancers are hormonal and can be controlled in some way by diet and restricting certain types of food that “feed” the cancers but mine is not one.

So, like everything with me, I follow my own path and basically follow the mantra of “everything in moderation”! Probably a nutrition expert’s worst nightmare but I essentially eat (and drink) what I enjoy but (mostly) on a balanced level.

I do, however, try to eat organically as much as possible…. pesticides, chemicals, hormones etc do freak me out especially with Ruby. My mum was always careful with our diet to give us the best chance possible with our food so I try to do the same for Ruby. She pretty much eats everything we give her and only draws a line at olives! I’m proud of how she will try anything and rarely turns her nose up at new things.

Food has become a hobby of mine in the last few years. I enjoy reading cookery books and coming up with a “menu” or food plan for the week based on ideas I have picked up. This started as a money saving exercise so that I planned our meals and ordered only for that plan online. Then we didn’t overspend by walking around a shop and picking up things that looked good but were of no relevance to the week’s eating. It still is about budgeting but also it has become my routine and I enjoy finding new ideas for each week and introducing new meals to Ruby as her tastes grow.

I enjoy clean, healthy food but wine and cheese are my absolute vices and I refuse to give them up! I have recently dropped drinking wine in the week – something even my oncologist noted was a big step for me! I really, really enjoy a nice red in the winter, a mulled wine after skiing or a crisp cold sauv in the summer but my sleep patterns and my bank balance have thanked me for the reduction in consumption…blurgh so sensible in my older age! It has also contributed a far less bloated tummy….god damn the hormones (or lack of them!).

Living in New Zealand is heaven for those who like wine….so many good wines made here and some awesome wineries to visit. My hen-do was a winery tour…my friends know me well! I may have cut down but it is certainly something I won’t cut out – I enjoy it and enjoyment as I see it is nourishing. I admire the sober amongst us but it is a step too far and when facing a shorter than expected life…I am going to do the things I love…wine being one of them 😊

Nourishment for me also comes from doing things that are good for the soul…in a different way to “L for Living” that reflected on doing things for enjoyment and getting the most out of life, this is things that feel good, keep me healthy and in good condition but are a little luxurious and personal to me. Facials, massage, yoga, pilates, PT, time out reading books…”me time”. That precious time (and rare alone time) that is just about me for a moment but also it is the moments with my family and friends that I cherish - like Sunday roasts, movie nights, days at the beach, Christmas, time in the spa, visits to hotpools or time away to just enjoy each other’s company. All warm my heart and give me the fuzzy feel good vibes.

I feel so good when I am surrounded by people I love just doing simple things like eating good food, enjoying a nice wine and chatting away…most of the best memories I have of my family and my friends involve that exact scenario (or Christmas – ask anyone I am obsessed with that time of year – but twinkly lights, good food, people and cheesy music fill my cup)

I have become more aware since - you know, the time is running out thing - of what makes me feel good and what doesn’t. Feeling energetic, healthy, strong and fit are so important and not all of that is physical or to battle my illness…I am a better mum if I sleep properly, I am more patient if I have a few hours to do something for myself in a week, we have a better marriage if we have time to focus on each other, we are a better family if we turn off all the distractions and sit in the spa together chatting about our day. I am a better daughter for being able to spend my drive to work every morning talking to my mum and dad. These are the things that nourish me, they make me healthier, I grow as a person from those around me and I am in good condition as a result.

Ruby, as you grow, please find the things and people that are good for you, keep you healthy and challenge you to grow physically and mentally. Do everything that keeps you in good condition in all respects and keep away from toxicity. Fill your bucket everyday and if anyone tries to drain it stay well clear, life is too short to let them. The things that nourish you are personal to you and you will find what they are but remember to eat good food, enjoy the wine (in moderation), say yes to some luxuries and make the most of the people you love. Who knows maybe one day you will love the olives too…probably once you have been back to Italy (that’s where I learned to love them) xx

A is for Attitude

Attitude is key to coping. I have said before that reaction is everything – you can rarely control what happens around you but you can always control your reaction to it. Attitude is much the same and I have very consciously tried to maintain a positive attitude at all times even when life feels just that little bit too hard.

I am very much a person of 2 halves – I am naturally quite an anxious person yet to use my mum’s words, I am also “courageous”. In other words I am scared shitless of most things, most of the time but I tend to do them anyway! Imagine a duck – calm and serene above water but paddling furiously beneath the surface…that’s me!

I’ve met people who, following their diagnosis, are bitter and angry – “it’s not fair” and “why me?”. These are valid and understandable emotions, which I imagine most people have felt at some point irrespective of the cause of the issue but they are not emotions that feel very healthy to me and I don’t want to feel sorry for myself or that it’s not fair. It’s a waste of energy and time – it won’t change anything and it is a very easy spiral downwards if those feelings take over. My cancer is no one’s fault and moping won’t make it go away.

How each cancer patient reacts to their diagnosis is unique and there is of course no right or wrong, so I can only talk about how it has affected me and how I deal with it. Also, I caveat this further by saying that I am 2.5 years into my latest diagnosis and 10 years past my initial one so I have had a lot of time to process things before writing this. I am also feeling healthy and strong at this moment….again, this may be a very different rambling if I was feeling unwell, tired and generally over the treatment process.

If I let myself dwell too much on my situation and the bigger picture I tend to feel sad and anxious but overall I do feel a great sense of gratitude. That might sound very odd but one thing cancer has given me since my original diagnosis in 2013 is perspective (see L for Living). My attitude to life or at least what is important has changed and I am grateful for that – it has definitely made me happier.

There’s a myth that happiness is a perfect life all of the time and that if life isn’t perfect then we aren’t “happy” but I don’t agree. Life is very far from perfect most of the time but it is my belief that happiness is much easier to achieve and I find it when I focus on the small things and all of the things that I do have rather than those that I don’t.

I do of course get overwhelmed with sadness at times; I’m sad that I will miss out on aspects of Ruby’s life; sad that I won’t grow old with Ryan (or drive him crazy for longer 😊), sad that I probably won’t get to take Ruby to Disneyland or that we won’t be able to choose and buy our forever home (drug costs means that we can’t now get a mortgage) but rather than focus on those things for too long I don’t allow those things to take away what we do have. We have a beautiful home, in a stunning village and our lives are full of love and laughter (most of the time!).

Being sad is valid and important to process so I do wallow sometimes and allow the tears to flow but I hate that feeling of being low so I have found ways to push that negativity away that work for me.

The same goes for fear. I am afraid, of course I am. I am afraid of suffering, afraid of the world Ruby will grow up in, afraid of what will happen for Ryan and Ruby if I am not here…as with most mums the usual day to day responsibilities fall to me so I have no idea how they will manage to coordinate school, uniforms, activities, food shop, bill paying, cooking…..the mind boggles! Hopefully one of my friends will manage Ryan and Ruby for on top of their own families! I joke….Ryan is more than hands on – he’ll be fine but the fear for them is there.

Facing mortality is weird – I’m actually not afraid of dying – I won’t know much about it I expect, but I am afraid of suffering, being unwell and not being where I want to be but most of all I have major FOMO! There’s too much to life that I want to do, see and achieve with my family and personally and I do not want to miss out! Hence trying to pack in as much as possible!

I am afraid that each scan will show up something negative and that life will change or I will become unwell or weak – “scanxiety” is very real. Around the time of each scan I can suddenly develop a range of symptoms that worry me and I convince myself of illness from chest pains, to headaches to sore underarms; I convince myself my heart is deteriorating, the cancer has spread and that I should prepare for bad news. So far this has turned out not to be the case and miraculously the symptoms disappear following the results only to reappear in a few months ready for the next scan sequence!

It is easy to let the sadness, fear and anxiety creep in but I work hard to keep them away. I feel the clouds coming and I move…I have found things to do that make the sun shine again…

I would say that I often get the compliments “you are so strong”, “I don’t know how you do it”, “you are always so positive” but believe me – you would be too and actually I don’t have a choice. Life goes on around me so I have to jump on with it! Plus I love life! To be honest, I haven’t actually met anyone who has cancer or any other illness that isn’t on the whole strong, positive and hitting it with everything they have.

Exercise for me is fundamental. I have never naturally loved exercise for the sake of excerise and I despise running wholeheartedly (but its free, easy to do anywhere and surprisingly therapeutic). I have, however, always loved sports like rowing, sailing, windsurfing etc so fitness is key but I have never really loved the gym. Now, however, I need to move everyday or I struggle mentally. I will do yoga, pilates, sailing, boxing, run, some weights with a PT and tap dancing every single week. This is a release and a distraction but also the drugs and the menopause mean that weight gain is real!.

I also imagine that the exercise is flushing my blood and therefore ,the drugs, faster around my body and zapping any mutant cells as it goes! I’m manifesting the killing of the evil f***ers every time I move and get my heart pumping!

Water is also so so important for me. It calms and revitalises me at the same time. Even in the UK if I needed time out I would drive (over 2 hours) to the beach just put my feet in the sea (yes I know I am a little odd). Suddenly I would be balanced again. Rowing, kayaking, sailing – I crave them and feel so much better when I feel and see the water. Living by the sea has really brought this home to me – just being able to walk 2 mins to the beach to stand in the waves, breathe in the sea air and take in the calming influence…I don’t know what I would do without it.

I do have a tendency to go a little manic (I can hear those who know me laughing at that). I will be very busy and fill every spare moment with something. This is part of my desire to live life to its fullest but also if I am busy I do not have time to think and therefore I don’t have time to worry. I can only be in the moment rather than worrying about what the future holds.

On the whole I try to focus on what is happening in the moment and how lucky we are. We are living a good life and I am able to work to enable us to do things that we like to do. We try to make the most the weekends, holidays and freetime but I do like to set some goals to aim for. They are achievable, relatively short term goals that aren’t too far ahead and ones that I can win. Since my diagnosis I have set milestones – Ruby starting school, getting admitted to the Bar, showing Ryan my favourite places back in Europe…… I find it hard to look too far into the future as I immediately think that I might not be there. It isn’t negative, it is just real and I want to focus on things I know I can tick off.

The attitude of others can bolster or destroy mental health so surrounding ourselves with awesome people who support us and who we can support in return is crucial. My tolerance for things that don’t make my family feel good is reduced. I won’t allow hurt, upset or stress to destroy our state of mind. Our time is too precious for unnecessary negativity or unkindness.

The majority of people have been incredible to us and beyond supportive. I have written a post (“O” for Others) that is about these wonderful humans and how I wouldn’t be able to cope without them.

Sometimes people will say “ I shouldn’t be complaining to you about….” But please do! Everyone’s problems are in context and mine might appear worse than yours but to another my situation is a dream so it is just context. I don’t want anyone to avoid telling me things just in case – I am here to support as much as I am being supported.

So, in summary - my ways of coping with the worst news possible – be like a duck – stay calm on the top, paddle away underneath and enjoy the water….sounds like a perfect recipe doesn’t it!? In all honesty I just get by each day with a smile and finding the small things to make the most out of. Focusing on the here and now and the physical world makes me feel grounded and safe. The world is crazy enough to make us all a little insane but being on my bit of sand with my feet in the water I will be ok.

Ruby – I can’t tell you how many nights I have woken up scared and upset and gone to your room and snuggled into you. Holding your hand, listening to your breathing and feeling your heart beat saves me, calms me and reminds me that your Dad and I are here for you. You ground me and I hope one day you will know just how much you saved me in so many ways.

You already have an amazing “can do” attitude and will give everything a go. You work hard and I know that you have determination and are strong willed. I am so proud of you but I want you to know it is ok to falter, to worry and to question but never give up – you can always find a solution. Enjoy what you have, look forward but don’t rush – you will miss the journey. Remember, if you are stressed or anxious just go and jump the waves – I will be right there with you.