I can’t say I am all that sure about sitting in front of my phone and videoing myself! Who is? But, I wanted to do a series of vlogs, face to face, explaining what SPACE means to me and why it has been such an important concept for me during cancer treatment and survivorship and the background to why I set up Samspaces and A Daily Space.
Talking to anyone affected by cancer is a personal and sometimes uncomfortable experience but it is something I feel passionately about. I want this community to know who I am, what I have been through and why I am doing what I am doing.
Check out the overview of the five vlogs I published on my You Tube channel in May 2017 where I discuss the analogy of the word and look at what each letter means to me.
“I’m sorry to say Mr Blair, but you have a brain tumour. It’s the size of a large egg, and we are going to aim to operate, perhaps some radiotherapy, chemotherapy, but if theres nothing else we can do, we will just keep you comfortable.”
As my husband was given those words I felt myself sinking into the floor. The world seemed to go slowly as I looked up at his Mum, perhaps expecting to catch her, but she just looked white. I looked to Ross, he seemed shocked, but calm.
That’s Ross though and there really wasn’t anything more to say.
That was the beginning.
He had been having headaches for a few weeks, had been going through depression and mood swings, but we had a new baby and we put it down to that.
Ross’ Mum, Dionne and I drove home without him and the car was eerily silent. No words could express what we were feeling.
Pure shock and fear. Deep, deep fear.
Getting back to my house we were met with Matty, Ross’s younger brother (who had been babysitting my two girls, while we had gone into hospital) he asked if everything was OK and his Mum told him the news. We just hugged and cried. Terrified.
Matty and Dionne left to go and see his sister and for a short time I was alone.
I phoned my parents and sister and delivering the news to others made me sob. What was happening? He had gone in with headaches!
The truth is, I new it was going to be bad, I never for one second thought it would be this, but I knew something was going on, something bigger.
I phoned my agent and left her a voice message. As a TV actress I had just finished filming BBC Casualty and had booked a film. I wanted to let her know that couldn’t happen, I just wanted to tie up loose ends, be present in what was happening.
I looked around at my house and I wondered what it all meant.
What would happen with us? The girls? How would I cope with this?
Nothing seemed to make sense and there was no answers.
I am an extremely positive person and I just knew I had to focus on one foot in front of the other, one step at a time. Clear everything, seek help from those around us and be there for Ross emotionally.
We have an extremely good bunch of people around us and over the coming weeks (with Ross’ instruction) a schedule was put together and everyone took turns having the girls. We wanted to make sure they didn’t get embroiled in any of it.
Brooke was about 3 years and Texas 1, so they couldn’t really understand, but I knew they would sense something if they were around us.
Everyone chipped in, they took so much pressure off us and those that did that will always have a place in my heart. The girls nursery, lead by the owner Steph, took the girls for months, free of charge. That is the good in the world, that is humanity.
Someone from America contacted me in the early days and we spoke online. This lady had grade 3 brain cancer and she was very pragmatic about it all. She gave me the advice “This can still be your life, it will be brain cancer life now, but it doesn’t have to define you”
This stuck with me and as an advanced practitioner of The Law of Attraction and someone who knows that what you focus your mind on, you bring into your reality, I practiced what I preached.
When people tried to tell me how horrendous chemo was going to be for Ross, I said “He will be fine, we will focus on that when it’s here”
People mean well, but they often impart their own fears onto you and that just wasn’t how this was going to run. Some may see that as naive, but you’re wrong. Ross hasn’t read a single thing online, or otherwise into brain cancer, chemo, radiotherapy, brain surgery and because of this he doesn’t know what he is supposed to feel, he just feels it if it’s there.
He has been remarkable. Two brains surgeries, chemo, radio, seizures, doctors poking and prodding, having his driving licence taken off him. He has defied what people said.
He has left intense chemotherapy to go and play football, or ride his bike. He would go into chemo and say, “shall I breeze this one?” and I would, of course, tell him “yeah, do it! Why not?”
You will never hear Ross say “This is a nightmare” or “why me?”
Quite the opposite, you will hear him say “Why not me? None of us are immune, it’s just science” or “I’m bored if it now, it’s gone anyway” “They keep telling me I’ve got cancer, but I can’t feel it!”
He is never a victim, WE are not victims.
As the partner of someone going through stuff it can sometimes feel like you are watching a movie you cannot do anything about. You feel frustrated for them, want to take away any pain, but yet you are left to watch. I had to learn to let go of trying to control Ross. I wanted to tell him what to eat, what he could and couldn’t do.
I was scared, there is so much information out there (often conflicting) and I just wanted him to be OK. You have to let your loved one make decisions or you will find your relationship will shift.
It does shift naturally anyway, as the partner, or carer you take on roles you didn’t have before. Believe me, I was not chief driver in our house and I don’t relish in it now. At the beginning everything was down to me and although we have tremendous support, it felt alien.
Nearly 3 years into his diagnosis and he is currently having chemo again, you wouldn’t know there was anything going on in his body. It’s hard to imagine what we have been told is reality, so we live like it’s not.
It’s not our reality right now and we live with hope. We are very realistic people, we know its not an easy one, but we try to live in an authentic way and mix practical (doing a will and power of attorney etc) with living our normal life and hoping for the best.
It’s the letting go and the fear that stops most, but the reality is that MANY people LIVE with cancer. It isn’t free of cancer, or death. It’s upkeep, its appointments, but in-between you live.
The advice I could give to others going through this is to block out negativity, focus on your loved ones and being as normal as possible, don’t try and force new ideas onto them and find time for you.
You are useless if you go down. You have to have time out and it’s a good idea to let people know you don’t want to talk about cancer all of the time (or people REALLY will)
Remember cancer isn’t personal, it doesn’t ‘only happen to the good ones’, you don’t have to be defined by this, in fact there can be positives to come out of it.
Strengthening your bond with your loved one
Seeing the wonderful side of humanity in the nurses, doctors and others around you that offer help.
The strength that you can find within you will stay with you forever. You learn compassion and empathy for others and a deeper understanding of whats important.
I had no experience of cancer before Ross and no real understanding of the impact it has, now I know that people’s lives get shook up and rung out and I want to help.
My approach isn’t for everyone though, I’m pretty straight talking, no bullshit and will not have negative chitter chatter. Say to yourself everyday “I will work this out” and get on with you day.
I have been thoroughly changed by Ross’s cancer diagnosis and I am not the person I was 3 years ago. I have seen and learnt things that will stay with me now forever and I am very strong.
As a carer, or someone close to someone with cancer, I am on your side, I am holding your hand, I alright there with you, I know, I KNOW and you are not alone.
Sending strength and love to all.
Please come and say hello via Twitter; @hollymatthews, Instagram; @hollymatthews84, My Facebook page; I am Holly Matthews, or my YouTube; HollyMatthewsonline
Anxiety is something that touches the lives of all of us who go through a cancer journey. It begins with getting your head round a diagnosis and the anxious feelings that accompany coming to terms with impending treatment you don’t want to be having. It continues with the stress of waiting for the results of scans that show how successful your treatment has been. To me this was nothing compared to the anxiety produced by feelings emerging after I had gone into remission. Feelings that I had bottled up in order to face the situation I found myself in and to be strong for my husband, child and family. Feelings that would rise up unexpectedly when life didn’t quite go to plan.
Yet, throughout this challenging time there was one thing that was guaranteed to lift me out of this, even if only for a short time: art. Ever since I can remember there is nothing I have enjoyed more than sitting down with a pencil and a piece of paper and capturing whatever is in my head. As a child I would sit and draw what I had seen in nature. I drew so much that I became quite skilled at it. As a teenager, my love of doodling got me through some tricky years when I needed to escape from the world. I carried on as an adult, not always being able to find the time to put paintbrush or pencil to paper but enjoying every moment when I did.
And of course most recently, I used art to get me through some very tricky moments after being diagnosed with non Hodgkin lymphoma last year. I sat in my hospital bed wondering how on earth I would get my head round having to have chemotherapy in a few days’ time. A friend had thoughtfully brought me in a sketch pad and pencils and I spent many hours drawing pictures of my baby son, who I only saw at evening visiting time. It didn’t take away the difficulty of the situation, but it took me away to another place, and my anxiety lifted.
Once at home, undergoing treatment and then moving into remission, I didn’t find it so easy to make time to create artworks. Apart from looking after my own health, my son was my priority and the only real time I had for myself was when he napped. The only way round this I could find was giving myself fifteen minutes each day to draw. This was enough and slowly, as each day passed, ideas in my head for paintings came to life. At this time of day, apart from needing to sleep myself, I felt a real need to switch my mind off and art helped me to do this. To me, it has always felt like a kind of meditation. By focussing on representing what I am drawing on a page, it is almost as if I am switching off a part of my brain. Objects become shapes and curves and worries become distant memories.The act of being creative not only reduces anxiety but also makes me feel that I am moving on to a new place in my life, something so necessary after what I have been through.
Art therapy can be valuable in dealing with difficult thoughts and feelings that need to emerge. I recently attended an art therapy taster session organised by the charity Victoria’s Promise for our women’s cancer network. We were encouraged to create a picture showing what the group meant to us. Mine depicted rays of sunshine surrounded by flowers. I felt this was representative of the way the group was supporting me and the other ladies in moving forward in life positively. After looking more closely at a swirl I had drawn in the centre of the picture, I realised that it represented a cancer cell, present as a reminder of the anxiety that I was still going through as I moved forward in life. I had not expected this exercise to be so revealing in such a simple way.
I do not believe that there are people who are incapable of being creative. We all have our own ways of expressing ourselves. It is possible to learn how to draw through various techniques which involve seeing what you are drawing as a collection of lines or shapes rather than familiar objects. Many people are told when they are young that they cannot draw or produce a good piece of artwork, which leads to a feeling of inadequacy. Adult colouring books have made art accessible to everyone, however, and are especially popular, perhaps because focusing on details in a picture and choosing colours to fill in the shapes can be so relaxing and therapeutic.
In the spirit of art and creativity helping to overcome anxiety, I am planning a charity art exhibition together with SamSpaces. This will not only raise money but also awareness of the journey that cancer can take us on, whether that be during or post treatment. We are planning to exhibit work by artists whose lives have been touched by cancer, whether as a patient or as a supporter, friend or relative. A section of the exhibition will be devoted to work by those who do not consider themselves to be artists, but have expressed through art what they are going through. If you are interested in participating, please email Sam or comment here……. Watch this space for more information!
‘Mindfulness is an integrative, mind body based approach that helps people to manage their thoughts and feelings.’
Mental Health Foundation
In an effort to stay ‘mindful’ of the influx of information out there about this very topic, I have decided to get straight to the point and perhaps be a little more pro active with this particular blog!
On looking online at the mountains of research there is on mindfulness as a recovery tool, I felt totally overwhelmed, I literally didn’t know where to start, so in an effort to save you guys the same (ever so mild!) panic attack, which of course would completely defeat the point, I thought I would blog a list of the mindful apps/books and courses that one can dip in and out of but that can also genuinely aid healing and recovery, especially after cancer treatment, without requiring a trip to a monastery in deepest darkest Tibet!
I’m going to dive in with the mobile option! I have to admit that when it comes to mindfulness apps, there are a lot out there! I could write a list an arms length but the one that has totally rocked it for me and actually has me practicing for three minutes at least, every night, is Calm: Meditation techniques for stress reduction.
I love the choice of scenes that fill your screen and their matching soothing sound affects. I have been known to simply have that playing in the background while working – this lot have ‘calm’ down!
The choice of meditations are inspiring and very practical, such as nine seven day programmes on topics such as managing stress or seven days of gratitude as well as a selection of times for various individual meditations on themes including loving kindness or deep sleep. There is also a kids option too (which my nearly six year old loves, though I cant promise that she keeps still through them!) Some are guided while others are not, but I have found this app to be the most affective in keeping me in a mindful routine.
Mindfulness is a way of learning to relate directly to whatever is happening in your life, a way of taking charge of your life, of doing something for yourself
I did this eight week course four years ago and loved it. I had to commute from Surrey to Fulham but it was worth the journey, even while undergoing seven weeks of radiotherapy! It is a very thorough course, exploring all the different forms of mindful practice and the theory and study behind it all. I loved finishing every two hour class with a mindful exercise, mostly lying down under blankets and listening to Caroline Hoffman, the leader of the course, guide us through body scans.
The homework is the key to the effectiveness of the course. They say it takes thirty two days to form a new habit so you are encouraged to practice every day and are given the appropriate CD’s and reading to help you. I found the homework a real distraction while waiting for my daily radiotherapy and it helped me feel less anxious and give the exercises a really realistic framework to practice them in.
We explored mindful eating, mindful walking, sitting and even speaking. From a post cancer point of view, it was the perfect course for me at that time, as everyone there had been affected by cancer so making for a very bonding and sharing environment.
My only negative feedback of a mindful course like this was that it merely felt I had scratched the surface of mindfulness and I felt like I needed to do another course to explore some of the themes more fully.
‘I love my clients and the process of teaching mindfulness – although, in reality, there is no ‘teacher’ and we discover the ‘learning’ together.’
– Gill Johnson, Mindful Elephant
For those based more around the Surrey area, there is a fantastic mindfulness course based in Godalming called Mindful Elephant (chosen because the name was quirky and memorable!)
Gill Johnson is a mindfulness teacher and facilitator for MBSR/MBCT group courses for the general public, schools, hospitals and workplaces. After a chronic pain condition Gill found herself attracted to the work of the famous Jon Kabat-Zinn and discovered links that helped her deal with her own physical pain. She started to share them with hospital patients as a volunteer and she found the improvements so dramatic that she enrolled on a training course.
Making mindfulness accessible to everybody is something Gill feels very passionately about and she is involved in a number of other initiatives though as she admits, it is difficult to keep up with the ever evolving research that is coming out of the rapidly growing area.
NEWS FLASH! Gill is offering a •• discount •• to any Samspace readers who might like to enrol on her course starting OCTOBER 12th so if you are interested please feel free to contact Gill; www.mindfulelephant.com
Tel: 07785 921 950
‘It is a real honour to hold a safe space and offer guidance for people to explore mindfulness’
I came across Shelila and her amazing Lollipop Wellbeing a few years ago, through social media. Sheila has a huge presence on twitter and runs courses in the Manchester area and occasionally Brighton. Her tips and posts on social media are a brilliant way of continuing a mindful approach to life while not on a course or afterwards.
Sheila set up Lollipop to provide accessible support for people who want to reduce stress and improve their wellbeing when it saved her life after approaching burnout from work related stress. For those who are not local she provides as many free resources as possible via her website including audio meditations and a monthly practice plan combining ideas for mindful living.
Shelia’s main focus within her mindful teaching is around self kindness, which of course, is something we are all in a little need of! Her recent blog ‘Everyday Mindfulness’ will resonate with a lot of us; http://www.everyday-mindfulness.org/growing-fearless-mindfulness-public-speaking-and-performance-anxiety/
Sheila discovered the self kindness area of mindfulness by accident. The more she deepened her practice the more it helped her with things like anxiety, grief and self criticism. When she attended a Breathworks Mindfulness for Stress course after experiencing a lot of stress at work and in her personal life, she realised she wanted to teach because it felt like paying it forward. She is now a Breathwork associate as well as a Mindfulness teacher and as well as being a qualified personal coach working one to one with clients too, she is incredible active.
Believe it not, I was given this book my (very mindful) mum in law! I love the title!
Written by the man himself, Jon Kabat-Zinn, this explores all the ways we can include mindfulness in our lives, whether we be a beginner or professional! It maps out the ways of cultivating a more personal mindful frame of mind where we can appreciate each moment at a time and help make moments for rich and full.
Jon Kabat-Zinn is also the founding director of the renowned Stress Reduction Clinic and Professor of Medicine at the University of Massachusetts Medical School. He teaches mindfulness and Mindfulness-Based Stress Reduction (MBSR) in various venues around the world and has written a zillion books on it all (but this one, in my opinion, is one of the easiest reads!)
BOOK – Mindfulness; A Practical Guide to Finding Peace in A Frantic World
‘This is precisely focused to help ordinary people boost their happiness and confidence levels whilst also reducing anxiety, stress and irritability.’
Another good read, this book gives a fantastic background to all things Mindful with a focus on more mindful based Cognitive Therapy (MBCT) This means that the practice is more about doing a little every day for there to be any sort of effect and they help you out with a little CD in the back of the book to guide you through setting out a new mindful routine. It is a great one to have to hand if doing any mindfulness courses.
It is specifically for people who just want to include mindful practice in their daily life for their own wellbeing rather than for depression or a specific problem and it is recommended by the UK’s very own National Institute of Clinical Excellence – in other words, it works!!
A mindfulness course may not be your thing but if getting creative is, have a go at this. Easy to find, easy to do and perfect at helping you tune into that tiny, undiscovered space that might be waiting for liberation (and a little clarity!)
There are umpteen colouring books on the market at the moment. I have seen a huge selection at supermarkets as well as bookshops such as Waterstones but whether you sit down and do it for five minutes or an hour, alone or with your child, it is a very easy and effective way of getting some space and mindful time into your day.
There is so much out there on this topic but I hope these ideas may be useful. I have to admit that I do not always find it easy to come back to my breathe and focus on the now but I have also learnt that the practice of mindfulness is exactly that, practice. It doesn’t need to be hours and hours every day but whether you prefer to find encouragement alone with an app or with a group in a class, it is definitely having a positive impact on many of us on many levels and if we can connect with that breathe on a regular basis and oxygenate our bodies and minds, healing has no limits.
“Mindfulness is about being fully awake in our lives. It is about perceiving the exquisite vividness of each moment. We also gain immediate access to our own powerful inner resources for insight, transformation, and healing.”
– Jon Kabat-Zinn
A blog on my experience speaking at the 3rd Breast Cancer forum for Breast Cancer in the young, the pregnant and those with a family history.
Teamwork is the ability to work together toward a common vision.
It wasn’t the most ideal time for my consultant to call me to ask a huge favour! With my five year old blowing a new whistle and, in-between breaths, explaining how to use a new compass while having no direction at all herself and squirming in her car seat, due to soaking wet trousers after dancing in a rain storm, I couldn’t have been more caught off guard!
Since it wasn’t Mum or Best Friend and he was either calling because there was something amiss on my last blood test (gosh am I due another one?!) or he needed someone to buddy a new patient, I shot a death stare to the squirming five year old in the back seat and put my finger sharply to the lips, letting my curiosity get the better of me.
Dr Brown Bear (our family nickname for my consultant, based on the character from the legend that is Peppa Pig!) has been my consultant for the last ten years but if you count my family history, you could probably add another ten! If anyone had my total and utter medical trust, it was him and as a patient, I had always felt very lucky to have him head up my own CT (cancer team)
He had been asked to speak at a forum in London the following Friday, on the topic of breast cancer in the young, pregnant or those with a family history and since I ticked all three boxes (lucky me!) he was calling to ask if I would be able to co present with him! Put on the spot, I usually willingly volunteer for anything (I am working on this!) but as I uttered the word Yes, my tummy flipped more than a cement mixer and I began to seriously wonder how far out of my comfort zone one could actually push themselves!
Since the subject matter of the conference at The Royal Society of Medicine was so relevant to the last ten years of my life, Dr BB thought it would be a novel and effective idea to include a patient as a walking talking case study and apparently I was the patient who had sprung to mind! Doh!
He wanted to put together a presentation that would be a shift from the norm and help the audience see things from the patients point of view. I loved this, and it was something I felt passionately about and had always wanted to do. This was an opportunity to give younger patients a voice and demonstrate how we might interpret all things clinical whilst ‘falling down the rabbit hole’.
We met to go through the presentation and there, stripped back to twenty five slides, were the last ten years of my life, broken down into roughly thirteen six monthly appointments. It was bizarre.
All that had happened to little old me?
As we talked through each slide, I literally couldn’t believe all the things that had happened. I had forgotten (or blanked from my mind!) so many details. As we talked, Dr BB would make suggestions of areas to consider discussing and questions he may ask me at certain points. Once again I felt pleased that I had kept all my diaries to remind me of the emotions, feelings and observations that I could draw on again to give an accurate picture of a patients experience.
Before I left, we looked at the schedule for the day and as I glanced down the list of names and titles (and my stomach flipped again!) I saw a familiar name as the key note speaker. Jo Taylor was due to talk at the end of the day and I was thrilled to see her name! I had been in contact with Jo for a couple of years, following her amazing work on Twitter for her brilliant ABC Diagnosis. Jo’s story was incredible and she had written a guest blog for me a few months ago. I was thrilled that there would be another ‘patient’ there and someone who I had been hoping to meet.
On arriving home that evening, I retrieved my diaries to take a few notes and prepare. I found myself face to face with the girl who had actually lived through all that uncertainty and fear, who had run head first down the rabbit hole three times and survived each fall with as much courage as she could muster. I read the first few pages word for word and felt a huge wave of emotion as I read how those first few days had affected me.
As I read, I relived a little, laughed a little and cried a little. I wanted to write my twenty six year old self a letter and tell her all this would mean something one day! Instead, I put her in my pocket and continued to scroll through the slides, hoping that she would help prompt me on the day.
As I arrived at the Royal Society of Medicine on Friday, I felt quite excited! It was as if this was something I had been preparing for a lot longer than a week! Dr BB met me at reception and showed me into the auditorium. It wasn’t as big as I had feared and there were two seats on the stage ready for us to sit.
No sooner had I grabbed a cup of tea (to steady the nerves!) we were being asked to take our seats. Dr BB and I sat at the front while Dr Kathleen Thompson introduced the days schedule. Then it was our turn.
Sitting on the stage with the man who had technically saved my life three times, was a total honour.
Talking through those huge events of one persons life, in black and white bullet points on a sterile screen, was my chance to splash some colour and meaning onto the page, so that the audience could appreciate the real personal impact of this disease. This was raw, this was real. I had been worrying that I would be tongue tied, that I wouldn’t know what to say, but as I sat there and listened to Dr BB and took my queue from him, I realised that all I had to tell them, was the truth. It was my reality, my experience that they wanted to hear. I hadn’t needed to memorise anything, remember any facts. This was my story, plain and simple and I was the professional now. It was totally empowering.
Being asked about the benefits of counselling, the importance of the holistic care available to me, what access there was to nutritional advice and how effective I thought certain treatments had been was wonderful. Add to this what the most important issues were to me at each point of diagnosis, as well as discussing the effects on my family and our history, it was a chance to lay out a reality that so many people are experiencing outside of the clinical environment. This was what happened under the surface and while the doctors tick boxes and follow guidelines, we, as the patients, are living with blurred or no guidelines at all and boxes we often can’t tick.
Having the opportunity to talk about my reasons for setting up Samspaces was wonderful and having the chance to rally more awareness for the issues we, as younger patients, face post treatment, was something that meant a great deal.
Next up was a fantastic plastic surgeon, Mr Ash Mosahebi, who discussed reconstruction and all the different areas on the body a flap could be taken from and what the results could be like. Following Mr Mosahebi, oncologist Dr Anna Kirby from The Royal Marsden discussed the Breath Hold technique and how it is helping the effectiveness of radiotherapy by getting the heart out of the way of the treatment. As the day went on, the presentations continued to be just as fascinating. Dr Alison Jones talked extensively about the issues of pregnancy during and after cancer and her colleague Dr Madhurima Rajkhowa talked us through the possible fertility options available should younger patients be in this situation. I felt so privileged to have been able to listen to these talented and highly respected doctors as they talked about their research and professions.
Watching Jo give her key note speech was very special. This lady, who only six weeks ago had extensive surgery to her sternum and who is still under going chemotherapy for a secondary cancer, blew me away. Her bravery, courage and unwavering battle to lobby the government and medical profession for more funding into secondary breast cancer prevention and research, is astounding. It was a hugely powerful speech and she totally rocked it!
From the feedback and conversations I had throughout the day, I learnt quickly that hearing a patients first hand experience meant a great deal to those attending this forum. The risk of including a patient had paid off and starting the day with our presentation and ending with Jo’s had highlighted to those listening, the importance of the patients wellbeing and the value of their indivudual experiences. It was so encouraging to hear how the structure of a younger patients clinical team needs to be reviewed including on tap holistic support, counsellors, orthopaedic doctors, a gynaecologist, rhematologist and nutritionists among others. I was delighted that our presentation had been received so well and left on a high, hoping that perhaps I had made just a tiny contribution in helping to understand how to better support the younger patient and how they are affected by the far reaching effects a cancer diagnosis can have. Maybe, somewhere down the line there will be new boxes to tick and more holistic guidelines to follow, during and after treatment, for the patient and the doctor. After all, if there is one thing I have learnt over the last ten years, it is a team effort.