Last weekend, I was literally on top of the world! By climbing to the top of one mountain, I achieved so much more than just reaching the summit. Being fortunate to have a birds eye view over that little corner of the world, gave me perspective. It was a realisation of how far each of us can go, physically and mentally, despite all the dips in the road, boulders and U turns we have to face, not just in every day life but in business and in ourselves.
After speaking at a wellbeing day with The Lewis Foundation last year, I had been talking to the amazing Lucie Joels, who climbed Snowdon with one of our Samspace bracelets and agreed that to actually take on the real deal myself, would be a fantastic experience and something worth doing.
Climbing an actual real mountain, four months post hysterectomy, seemed a little punchy but six weeks after my operation in February, I met up with Sarah, one of my Safespace women, who said she was going to climb Snowdon with two mutual friends from our yoga group, for the Pituitary Foundation.
Sarah is an ambassador for The Pituitary Foundation, after being diagnosed with this more rarer cancer a few years ago, in the form of a tumour. She lives with the physical and physiological effects every day; on her hormone system and body temperature, which, in turn, affect hair loss, bone health degeneration and an increased sensitivity to stress, among other things. In Sarah’s case it cannot be operated on. After radiotherapy and chemo and a consistent ongoing maintenance treatment, alongside holistic approaches, she has continued as active a lifestyle as she can. As well as working for herself, she comes to yoga three times a week and her positivity shines. She says Samspaces has totally changed her outlook as a person and given her confidence and the unique type of support post treatment, that she was looking for.
So as the sun rose last Saturday, 23rd June, a large army of orange ants wound its way up this ‘little’ Welsh mountain, like something out of the Noahs Ark, all marching in two’s, side by side, carrying their climbing essentials in their backpacks, like little tortoise with their shells, waving the flag for Pituitary Cancer. The charity is only twenty-five years old with no official funding except all the efforts of local and national fundraising. Jay does an incredible job organising it all and trying to keep momentum going. No easy task! Yet, for this event, the sky had never looked so blue, the grass so green. Nature in all of her splendour. The path snaked away in front of us and all I wanted to do was follow it to the top.
It was beautiful. I won’t waffle on about every view and photo opportunity. Suffice to say, there were a lot of them, but as we began the ascent and followed the uneven and often rocky pathway to each meeting point, I was amazed at the magnificence of nature. I revelled in feeling so small and insignificant. A mere ant. The vastness of the sky and the expanse of the land around me, was space optimised. There was a sense of surrender and the rawness of the surroundings gave me a greater connection with what was happening right at that moment.
Reaching the top, conquering that last steep incline, was a phenomenal feeling. Heidi had nothing on me, marching up those practically vertical paths! Thankfully I saved the public my rendition of ‘Climb Every Mountain’ but only because i was out of breath!! I felt so energised and happy. Maybe there is something in that mountain air after all? I remember thinking, everyone up here is smiling. Not one person looked sad or unhappy. It was pretty crowded but there was such a sense of achievement. The sense of space was empowering and exhilarating and never before has my Sutra quote on my home page been so apt!!
What made it even better was that Sarah’s train arrived at the same time we had. Due to a knee injury, she was sadly unable to walk and her metaphorical mountain had definitely been a huge climb emotionally in the lead up. It is never easy being told we cant do something when we had our hearts so set on it and were so determined. However, the body is a fragile and precious thing, and it was clear that the far reaching side effects of her pituitary condition were still prevalent and this needed to be respected.
It was important for Sarah to be there though, not just for the foundation, but for us and for herself. It was still a journey for every individual there; a challenge for mind and body, strength and resilience. Meeting her at the top was wonderful. It didn’t matter if you had walked, run, cycled (yup, no, I’m not kidding!) flew (see glider picture below!) or taken the train to the top. You were there, breathing in the clean air, staring at the incredible scenery, standing on a flipping mountain top, 3,560ft above sea level! Trying to stand on the summit for a photo was a separate challenge in itself! Everyone jostling for position, both for feet and selfie sticks! Oh to have had that summit to ourselves.
After a hasty cup of hot steaming tea, the best egg mayo sarnie I think I have ever tasted and a change of socks (fantastic advice from a dear friend!) the descent beckoned. It had been much cooler at the top. The sun had disappeared while we fought for photo space on the edge of precarious vistas, but as we started downward and became more sheltered again, it became warmer and the on/off fleece, stayed off!
I spoke to some amazing people that day. It was one of the most inspiring experiences I have had. I can stay true to my talks and presentations with the knowledge that walking down a mountain IS harder than walking up! Yet, walking together, listening to such courage and learning about other peoples conditions, illustrated to me that those faced with adversity can always find a way to rise again, bigger, better, stronger and even more determined and having a hand to hold helps ease that journey. Having a focus, a goal, can make a fundamental difference and generate a much greater sense of positivity. There was only equality and integrity on that mountain, every orange ant helping the other; caring, sharing and coming together to celebrate life. Not so insignificant after all.
Arriving back on tarmac was a slight shock to the lower back! I was getting strangely used to the rocks and cobbles! Thanks to Lou and a fabulous chap from our group, I didn’t have to carry my backpack for the last ten minutes as my tum was sore but boy, did it feel amazing turning to look back up to where we had just climbed. Our group raised a fabulous £4,000 for The Pituitary Foundation that day and I am so grateful to everyone who sponsored us. This money will help quicker diagnosis, more support and better treatment as well as raising much needed awareness. After a quick drink and thank you with the guides and some of the other climbers, we drifted back to our little cabin to rest, eat and nurse our aching legs.
One large bowl of macaroni cheese, chilli and Bridesmaids on Netflix viewing later, as I was wondering how to navigate the ‘child friendly’ ladder of the bunk beds I was sleeping on the top of, I moved my phone and saw I had a message.
The gorgeous Gemma, who I met last year but feel I have known forever, had gone to the MPower award ceremony in London as she had been nominated for her incredible Ways Gone By products. Due to my commitment to climb, I had been unable to go. I had been so incredibly honoured to have been a finalist and the love and support for us all had been so amazing, but as the phone beckoned with its ‘LOOK AT ME! LOOK AT ME NOW light’ I saw the message, ‘I won and so did you!!!’
I double and triple looked and let out some weird scream. The girls thought perhaps some kind of man eating spider had gate crashed my top bunk manoeuvring routine but I flew into the sitting area and suddenly the aching thighs, sore feet and throbbing groin miraculously disappeared and I was jumping up and down, punching the air, laughing, crying (or was that the pain and sheer fatigue?!) like a mad woman. The pride was overwhelming and thrilling.
Needless to say the eyes were wide, the mind was buzzing and the heart was thumping (not just from finally managing to heave myself into my top bunk!) and since those are such perfect conditions for deep sleep, not, there was a longer wait than I had anticipated for some rest and recuperation to wash over me that night, but as I lay there, on my cosy top bunk, I felt so grateful.
Samspaces started as my handwritten journal and scrap book, marking every metaphorical climb, descent and pot hole. Then it morphed into a blog to offer some solidarity to younger patients. Then a website to provide inspiration and practical tips for empowering our recovery. It grew from there into a support group, then came the idea of meeting for practical wellbeing workshops. A network developed and now an active community with a growing doula extension. We have come so far.
I wrote in my last blog about power and passion, why the nomination had meant so much in the first place, but to win is not just recognition, it is an acknowledgment of the awareness society need for those adjusting to life after cancer and the complexities of this, with an appreciation of the bigger picture. Sarah’s knee, my hysterectomy, these are just prime examples of the far reaching effects. Cancer doesn’t always end when the treatment does.
As I listened to those awe inspiring people, climbing that mountain after facing a life threatening diagnosis, some as recently as a couple of months ago, and fully appreciating every fear and hope they may have had, I felt so proud. Proud of them, proud of the friends I have made through Safespace and proud of who we all are after facing any adversity. Breathing that air, looking at such beauty in a view that cost nothing, I felt unbelievably respectful of human strength, nature and all its wonders.
Human nature is awesome. The kindness, support, solidarity and care that I saw that weekend warmed my heart so much and gave me faith. Winning the award gave me faith too. Faith in women, empowerment, recovery and healing and belief in a new genre of business and in myself. Cancer gave me a reason, writing gave me a purpose, climbing gave me a goal and winning gave me a dream come true.
There just aint no mountain high enough to climb up, and maybe more importantly, down, now!
If you haven’t had a chance to donate yet but would still like to, click here for our Just Giving page.
Thank you to everyone for your generosity and support.xx
Just before I heard that I had been nominated as a finalist for an MPower award, I had made a decision. No more seeing the Big C as the enemy. As I have entered another decade, I have felt a huge shift in myself. I still get stressed, I still yell at my daughter to hurry up, I still worry about my hubby when he is travelling and battle with that negative chorus in my head that always wants me to doubt myself and think the worst, but I genuinely feel that I have a greater sense of who I am. Maybe it’s just an age thing and this is ‘being forty’ (so there are a few good things aside from wrinkles!!) but given the last twelve years, I wanted to express why this nomination means so much.
I literally can’t believe I have been nominated for this award. As I found myself reading the email on Thursday night, by myself, it felt like a giant thumb poking out of the sky with a neon light saying ‘Its You!’ However, what truly astounds me are all the other women out there who are doing truly amazing things. I am honoured to know two other finalists in other categories whose help, support and friendship is invaluable. MPower is shining the spotlight (big thumb!) on Women In Business all over the UK and they just turned on a very bright light!!!
Adversity just makes us stronger and more determined. We have a heightened sense of what needs to be done, because of what we experienced first hand. We are living through the gaps, we are challenged by the lack and putting something back. It is so incredible to watch and I feel humble to be a part of that. We are focused, we are fuelled by passion and we are driven by our precious feminine emotions. If it were not for them, half of the things we are doing, would not be being done! It is our sensitivity, our awareness and our core caring nature that I think builds the foundations of a women in business.
If it were not for cancer, I would not be doing what I am doing. It sounds mad, but the Big C gave me a P – Purpose! Recognising a lack of support for survivors and those adjusting to life after the hospital environment and routine of treatment and appointments, as well as experiencing the anxiety and confusion that came as part of life after cancer, gave me the focus of finding a way to help myself. Common threads of vulnerability, frustration and loss of direction encouraged me reach out and build the Safespace support group. The hardest challenge, of secondary infertility, helped me recognise the lack of support for mums affected directly or indirectly by cancer and chronic illness during pregnancy and post labour and I am currently in the process of launching my Post Natal Doula business specialising in these amazing mums who need that deeper level of support and nurturing.
Being welcomed into a community who always have each others backs, who cheer and yell from the side lines for every little milestone, is precious. Networking groups like How Does She Do It remind us how women, in any culture, have always supported each other and how vital all our friendships are. I have to thank Jo Ferrone for putting myself and three others forward, without our knowing! She believed in us. That is power in itself. We all met through each other and this particular networking community is so much more than an outlet to push a business. In this day and age, with careers, financial pressures, children and the fast-paced-highly-dependent-on-technology-life we lead, we are giving each other the opportunity and solidarity to think outside the box and embracing it! The sky is literally the limit. No idea is too small.
I really needed support post cancer so I had to make it. I started an adventure which has been a journey of healing and recovery. That loud voice I mentioned earlier has its fair share of rants and self doubt plagues me every day, but, after falling down the rabbit hole (that was each diagnosis) it is as if I stayed in wonderland and made it my home. In doing so, I gained an incredible group of friends, a network of warriors and I am always learning so much about self care and wellbeing. I have pushed myself out of the confines of my comfort zone (and from someone who loves a throw and a cosy pair of pjs, thats saying something!) with talks, workshops, radio interviews, podcasts, new hobbies, like writing, and I have been empowered to make huge decisions, that a few years ago, I would never have done.
One of the challenges of doing our own thing, in my view, is getting our voices heard. Social media can be a great vehicle but it can also get noisy and sometimes we can feel drowned out. I have often written about my love hate relationship with Facebook but when I got the email, I felt as if someone was giving me a loud speaker and saying, join the celebration and shout it out loud. I feel very honoured to be among these incredible businesses and strong and inspiring women. Having this space to raise more awareness of life after cancer, as well as shine a light on mums who have faced adversity and challenges that can make motherhood even more precious, is a huge privilege and I can honestly say, hand on heart, that I love what I do and I can’t wait for more adventures to come.
Sadly, I can not attend the awards ceremony. I made a commitment to climb Snowdon with a special member of the Safespace group, to raise money for The Pituitary Foundation. She had pituitary cancer and came to the Safespace community a totally different lady. She is now full of hope, confidence and positivity and getting to know her over the last year or so has been such a pleasure. There are a group of four of us climbing and we have been training with every steep incline in the Surrey and Hampshire area I think!
The irony of this clash is the other reason I am climbing. I have given a few talks about the complexities of life for a survivor and I often liken it to the climb down a mountain. Getting up the mountain is hard but once we get to the top, the support can fall away and while navigating our way down, we have to manage boulders and pot holes such as mental health, fatigue and physical side effects, that perhaps are not as obvious as those on the way up. Being able to physically walk up and down this mountain is a literal challenge that I feel passionately about. I may have experienced cancer and the fall out three times but if I say its like a mountain, I think I should live the metaphor too! I am disappointed I can not do both but I guess there is a reason for everything.
Getting this far is a huge milestone for Samspaces. Being able to celebrate everything that has happened and all it has taught me is a huge positive that has been a foundation to build on. I have been led from one amazing person to another, survivor and therapist. In all our collective spaces, we give ourselves a safe space to connect and support each other, just like women in business.
People have asked me over the years, ‘Don’t you ever wonder why me?’ I always answer, ‘Why Not me?’
Look at this way, if it hadn’t been me, I may be a totally different person to the one I am now but I rather like me, thank you; not just as an MPower award finalist, but a survivor, a mother, a wife, a sister, a daughter, a friend and a woman in business!
‘Life is a journey that must be traveled no matter how bad the roads and accommodations’ – Brainyqoute
1st March 2018
As storm Emma and the beast from the East collide on this freezing March (for heavens sakes!) evening, I pull the duvet up a little higher and snuggle down a little deeper. I am hibernating in the aftermath of hurricane hysterectomy!!
Two weeks post op and my abdomen throbs, a little reminder that it is still settling, still snuggling down itself, healing, finding new space. I wriggle to find a comfortable position as I move onto my right side and use a pillow to bolster my left leg to support myself. The last time I had to support myself in bed like this was when I was pregnant and then after my c section. How on earth did I manage with a new born baby too?!
Getting to this point has been a journey! Actually more of a long winded eleven year around the world challenge, but hey, its been an experience! The process of making this decision and pro actively taking this action has been challenging but has taught me that it doesn’t matter how long it takes us to get somewhere, its the journey that counts.
Two years ago I never thought I would have been strong or brave enough to put myself through more surgery, no matter how much risk it eliminated. Throughout many of my Samspace blogs and vlogs I have likened the far reaching side effects of cancer treatment to climbing down a mountain. Finishing treatment might be the summit but you still have to get down and that climb has its own set of challenges. When making big decisions, just like that descent, it can’t be rushed. It is an organic process! Life and all of its twists and turns are all part of an intricate pattern of pathways, roads and milestones, thats why its called a journey. The speed at which we travel this course is a natural process and timing is everything.
Let’s leave the mountain for a moment though and think about volcano’s! Like Vesuvius about to erupt, the side effects of one of my maintenance drugs, Zoladex, had been rumbling for a while, but I had always thought it was normal. For anyone not familiar with this drug, it is a small slow releasing pellet injected into the tummy area, in my case, every three months on alternating sides, and works by down regulating oestrogen production for hormonally receptive cancers.
I imagined it as a little bubble around my ovaries, protecting them but by doing that it forced me into a medically induced menopause, more so than the drug tamoxifen. What I didn’t appreciate was how the surge of oestrogen that I was having as the zoladex wore off, and this dramatic change in hormone levels was causing a chemical in balance too. Last autumn, that volcano erupted and the lava of anxiety, insomnia, lack of energy, disconnection with those close to me and emotional overwhelm poured out and the fiery flow engulfed me.
After realising this just wasn’t normal, I met with my breast care nurse and then my GP. It was gently suggested that some anti depressants may be a short term method of managing the anxiety as no one could give me a definitive answer as to how long I would need to stay on these maintenance drugs. The frustration was just an added factor, manifesting in this constant hum of anxiety. I was four years into my remission, approaching the big 40 and being the control freak I am (and only human!) I wanted a clearer picture of my future, but I couldn’t take any chances. I had such mixed feelings about more drugs. All I wanted was for this fog to lift but the idea of taking more drugs to help the side effects of other drugs seemed absolutely ridiculous! I felt a mix of relief and dread, shame and pride! Discombobulated was my middle name!
I saw my consultant for a routine check up in December. I recounted the last couple of months and he agreed, this was not ok! His view was that since I had had breast cancer at a younger age than most and more than once, I had more air miles left (sadly not to cash in for the Caribbean!) and therefore the treatment plan was less text book, but my quality of life was paramount. I felt like some kind of rare species!
As we talked through the options, of which there were few, we appreciated that the concoction I was on, was clearly working, but to what detriment?! My consultant didn’t want to make any hasty decisions but thought it best for me to see a hormonal specialist in London. As we talked, the words ‘maybe I should just have my ovaries out!’ spilled out of my mouth and all at once, the needle scratched to a halt and the words were left hanging between us, like music notes falling off a page. ‘What about your fertility?’ he asked,
I sighed, ’There aren’t going to be any more babies are there.’ This time I wasn’t asking the question.
On arriving to see Dr Alison Jones, I was reassured by her knowledge of my case, her professional relationship with my consultant and her experience with hormonal cancers. She was amazing. On talking through the situation as it stood, she confirmed that having my ovaries removed was a ‘no brainer’, ultimately meaning I would no longer need to have zoladex as part of my drug regime! She also told me that most pre menopausal women taking three monthly rounds of zoladex are also on the same medication I had been put on, to manage the side effects and that, given my history, another pregnancy was out of the question. With an almighty thump, I landed on Planet Acceptance, the fog cleared, I could see the path ahead clearly and the release that came with that, was immense. The journey had taken long enough!
After seeing my gynaecologist, it was suggested that in addition to removing my ovaries, a full hysterectomy would be advised too. There had been recent abnormalities and after considering my background, she advised it would be better to do the whole lot in one go. It would save any further surgery further down the line as well as reduce any further cancer risk. The recovery would be longer but I was young, fit and otherwise well.
It had been a long time coming, but the wheels were in motion and there was a sense of relief; facing up to the fact that I was getting no younger, that there would be no more more babies, that it was totally irreversible, that I would be post menopausal at a younger age than most, but that my risk of not only ovarian, but uterine and cervical cancers would be non existent and I would only have to take Tamoxifen going forward, far out weighed the concerns. It had been such a huge shadow that had hovered so heavy for so long but now I could breathe. I felt empowered that with the best advice, after going down every road I could, I had been pro active and actively considered all the options and come to a definitive answer for myself and if it hadn’t been for Mount Zoladex erupting a few months before, i might never have got to that point!
The day arrived. We had decided to return to the hospital where I had had my mastectomy and reconstruction, my lumpectomy and all other surgeries, as well as being born there! I was nervous but there was a huge sense of the final piece of the jigsaw being laid, the end of a rather long chapter brought to a close! As we arrived, all my surgery fears were put to rest by the incredible doctors. The amount of spontaneous trust we have, as we willingly hand over our lives to a medical team an hour before surgery, is always slightly unnerving!!
I was given a spinal but I couldn’t have key hole or tolerate heavy duty pain killers (more is the shame!) More needles, more poking and prodding for veins, which always seem to vanish at just the right time, and suddenly, I was coming around. Goodness only knows what I was jabbering on about before I conked out! Its funny to think how ‘with it’ we think we are as we come around from a general too. I thought I was totally coherent and was absolutely delighted that I wasn’t feeling sick. So delighted in fact, that I would tell any nurse or doctor who came over. My gynae said it was sheer entertainment! Oh dear (head in hands, shaking my head in embarrassment!!) That’s a Friday night Ill want to forget in a hurry and I didn’t drink a drop!
During my four day stay, there were emotional moments, there was sickness and there was also surrender. We forget so easily how to let ourselves heal, emotionally and physically. We have to re learn how to let it wash over us and just rest. The first week was tough, I guess it always is. Aneasthetic is a bitch! I defy anyone who disagrees! Each step was a little mountain; getting out of bed, eating a meal, having a shower, going to the loo, walking down the corridor, having the catheter out, getting dressed myself, having the staples removed. All huge, massive achievements. The little things become huge things; necessary hurdles you have to jump during the recovery process. The mind pounces on each accomplishment, savouring every inch, buoyed up, celebrating, until the fatigue descends again and sleep erases it, leaving the slate clean for the next day.
18th March 2018
Now four weeks on, on the one hand, recovery feels as if it has been slow and frustrating but after my check ups, I know I have been rocking it! After being attacked by what looked like a Rymans stapler, (staples in photo below!) the scars on the outside are healing brilliantly. I swear Rosehip oil is the creme de la creme of oils and I was thrilled to hear that the histology of everything that had been sent off for further testing had come back clear of anything sinister! Interestingly, it appeared I had had endometriosis as well as PCOS and my ovaries were the size of shrivelled grapes (god love ‘em) but hearing this was just another wave of reassurance that I had totally done the right thing. It illustrated the power of the mind body connection again, and psychologically I had known this part of me was so suppressed and inactive, it needed to come out! Like some kind of snake, I felt like I had shed a skin.
Emotionally, I didn’t realise how much I would relive my double mastectomy, exactly, almost to the day, four years ago. Everything had been a mirror image, except the area of surgery! I had compared every feeling, every sensation, every little hurdle, to my experience before. I had been in the room next door to the one I had been in before, some of the nurses were the same, it was the exact same time of year as my last visit, I had the same side effects of the drugs. My brain was not switching off either and sleep was interrupted and full to bursting with vivid dreams. I was exhausted but clearly by brain needed to process everythingl too.
Escaping from hospital was like a prison break! I had to get home! My mother in law came to stay and though amazing to have her, she had moved in for a week four years ago too. The similarities continued, heck, Death In Paradise was even on again while MIL massaged my feet (I told you she was amazing!) and to add insult to injury, I even had to wear the same blinking green blood clotting socks!!!! Love that look with floral pjs! Yet, there has been an acceptance in me that has appreciated the importance of this part of the healing process. My house became my sanctuary and the feelings of deja vu gradually passed.
It is all part of the process. The effects of any surgery stay with a patient for a while and we so quickly under estimate the effects. Not only is the process of the toxins from the drugs, working their way through our bodies, slow and debilitating, but the process of pain management and then the reflection, adjustment and acceptance are all physically and mentally challenging. Our bodies are more vulnerable, our minds are more sensitive. To heal, is to hide in a safe and nurturing space. To heal, is to surrender to the help and love of friends and family. To heal, is to let a natural process of repair and regeneration proceed, in its own time, in its own way. All we can do is succumb and trust our ability to do this. It’s not easy and being here again, has highlighted this so much, but with Spring around the corner (albeit a little late, as I look out at a snow covered garden!) and with my big birthday around the corner, this marks a new start, a new chapter, a time to celebrate, and boy am I looking forward to that part of the process!!
When you first hold that little bundle of wrinkled skin and shrivelled gorgeousness, in your arms, your life changes in the blink of an eye. Your carefree days of only having to worry about yourself are gone, your time is no longer your own. You are a mum. You are responsible for another life and the kisses of love and adoration that you pepper incessantly over that tiny head, are full of promises and dreams.
Eighteen months after I gave birth to our daughter, I sat in my doctors waiting room, wishing someone would take me in their arms, swaddle me in a blanket and kiss my head with promises while my dreams whirled around me like some kind of tornado.
I had been diagnosed with a hormonally receptive breast cancer for a second time. Not only did I have a husband this time around but I had a daughter, and the thought process that went with that minor detail made for a completely different thought process than it had before, seven years previously, in my twenties, when the most important thing to worry about had been whether to have white wine or red wine with dinner!
The plates we spin as mums are many; kids, routine, family, lifestyle, work, relationships, but when we are given the almighty serving dish of a cancer diagnosis to spin alongside, it takes so much of our attention to keep it spinning, that we can often find ourselves watching on while the other plates wobble to a lazy end and then crash to the ground.
A mothers love is a powerful thing but when I saw her toddling towards me on my return from that awful appointment, I felt totally helpless. What did this mean for her? How would we explain this to her? Who would look after her while I went to all my appointments? How much of her life would I be around for now? How was I going to cope with her energy? Does this mean she might be at risk?
As we processed everything, I put her to the top of my list. I wanted to protect her and I didn’t want her to notice anything different, but as details began to emerge of the treatment plan, I realised that her routine would be affected and we needed to manage that. Communication was key, but how do you tell a nearly two year old? How do you tell any child you, or a member of your family, have Cancer?
In this case, we kept it simple and related it to the global pink phenomenon that was then Peppa Pig. In all his glory Doctor Brown Bear stepped up to the mark and we told her that Mummy had an ‘ouch’ and would have to have daily visits with Doctor Brown Bear to make it better (though she looked understandably put out as to why she wasn’t invited too!)
But when, another eighteen months later, I had a third diagnosis, words failed me, never mind finding more to explain to a three year old. A child’s world is only as big as they are, their scale of reference is relative to their age, so the complexities of explaining to them something that is so often associated with death, becomes one huge scary issue!
My daughter was very young on both occasions, so we could just about manage the language and wave of questions that were fired at us like bullets, as we muddled through treatment and surgeries, but I was aware that she became clingy, a bit tearful and though generally happy and her normal outgoing self around others, the mothers guilt feasted and leapt upon these minor fluctuations, and self doubt and vulnerability caused my confidence as a mother to crash.
The hardest part for me was the huge black cloud that is the ongoing state of my fertility. A four year old’s radar for different family structures asserts itself considerably and when the question i feared the most was suddenly vocalised, it felt like a bomb exploding. The pain and the gut wrenching twist of my stomach, totally floored me, ‘Mummy, when will I have a baby sister or brother?’
Trying to keep language simple and not dissolve into a puddle is hard. We can’t predict their questions, we can’t guess what they will say next. So how do we manage issues such as the change in our appearance and hair loss, with older children? How do we tackle the sometimes debilitating fatigue and side effects of radiotherapy and chemotherapy? Or, as in my case, how do we start a dialogue with children post cancer, and discuss the far reaching side effects on ourselves and our families? After my own experiences and talking to so many other patients and survivors who are also, first and foremost, Mums, I realised that the support for us, as a group, is not as accessible as it should be. When the darker and more intense issues surface and we are still spinning all those plates, who do we go to? We push the panic deeper down inside us. Oh for that darned instruction manual!
Our children are individuals too. They may open up and confide in us or another member of the family, but they may also turn inwards and become guarded and defensive. If we focus on Cancer as a thing are we overwhelming them with issues of mortality? If we don’t, how can we control what their friends and outside influences tell them? Our mummy minds are a hot house of contradictions and once again we feel helpless to the things we can not control! The unknown is a scary place and as mothers, we will always claim that responsibility to protect them from anything that may jeopardise their innocence.
Parenting Support and Samspaces recognise all of these concerns and complexities and are collaborating to offer a series of workshops to support and nurture these feelings and concerns. With tools, tips and models that have worked effectively in other tough parenting areas (divorce, separation and siblings with special needs) our aim is to provide a safe and honest space for mums affected by cancer, directly or indirectly (it could be another close member of the family,male or female) to discuss what it is we need to feel calmer and more productive, what we can do to support ourselves and our children in a more positive way as well as discussing how we can move forward while creating a new family normal. Perhaps, together, we can implement small changes and take slow, baby steps; like taking ten minutes each day to allow ourselves to separate from that intensity and play, interact and engage with our children, creating a more positive environment for them, while offering a safe space where things are familiar again.
In light of everything, I am so proud of the girl my daughter is becoming. She may push us to the edge with her insanely early wake up calls, but she is her own amazing person. Recently, when I tried to explain to her, what Cancer was, now she is older, she told me, quite adamantly, that Alzheimer’s is way worse than Cancer because Great Granny has that! I realised that in her world, Cancer can’t be that bad because I look fine, however Great Granny is slightly less fine! Kids are clever, they pick up on everything but whether two or eight, I am proud she has seen that a mother can be strong, brave and honest and if she grows up knowing nothing else, I want her to know,
‘A mothers love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path’ – Agatha Christie.
And that, my darling, includes Cancer! x
To reserve your spot on the first FREE workshop on June 6th 2017 click here;
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.
Thank you to Pink Ribbon, RSM Professionals and Breast Cancer Care
After being told that three out of the four machines were down that day and the delay was two hours long, one look at my horrified face (after interrupting me in full flow of IT demo with Doris and Pete) it was quickly decided that I should return the next day and start afresh. I left feeling totally drained and practically wheel spinned out of the car park much to the disapproval of Mr Car Park Attendant who was still loitering around.
The next day I didn’t take any chances. Luckily, I had had some reflexology booked in and after tearfully recounting the day to my counsellor of a reflexologist, and having a fantastic calming session, I was packed off armed (and dangerous), with a holster of aromatherapy oils to sniff on various tissues, books to read, iPads to write on and headphones to drown out the voices, while listening to calming meditations I had spent hours downloading the night before.
Unlike the day before, I swung freely into my ‘special’ parking space after making sure Mr Car Park Attendant wasn’t around and skipped confidently into the ward and literally stopped dead in my tracks. There was no one there. Not a soul. It may as well have been a completely different hospital. A lovely Sister promptly came over and invited me into a private room to chat and go over my treatment plan and x rays, apologising profusely and explaining that the day before barely ever happens! It was like I was in a parallel universe.
This was only exaggerated by the general feeling of surrendering to aliens as I climbed aboard the radiotherapy machine a mere few minutes later. After undressing and putting on the all too familiar blue dotted hospital gown and waiting briefly back in the same chair as previously, I was called into my assigned treatment room. The machine’s formal name is a Linear Accelerator (doesn’t it even sound sci fi?!) and it’s similarity to some sort of spaceship was ironic. With a long tongue that is actually the treatment bed you lie on, I felt like ET about to hover off to some other planet somewhere.
The LINAC uses electricity to form a stream of fast-moving subatomic particles. This creates high-energy radiation that may be used to treat cancer.
Lying on my back with my arms above my head (and prepared for another dose of pins and needles!) I would stare above me, feeling as if I was lying beneath some space ship, looking up at this huge machine that was about to spit out radioactive light right at me and beam me up! The radiation therapist would make all the checks, lining me up accurately. I had to keep absolutely still for the entire time, so itchy noses were a definite no no! The area measured on my body was reflected in the pattern on the lens above me which covered a large area of my sternum, chest and throat. I had also been warned that it may cause burning to my back too as the rays go straight through to the other side. Well, what do you know, I get a lovely brown left shoulder blade too, better get out the after sun!!
The whole procedure reminds me of launching a space rocket, or indeed a UFO! Once all the checks match and are so bang on there is no room for error, the machine turns on and the unit above is lowered down towards me. 5,4,3,2,1! Houston we have lift off! I’m not claustrophobic but its a strange thing, feeling as if you are about to be sandwiched between two pieces of rather heavy medical equipment. Talk about personal space! Once this is at the exact height necessary, the alarm starts buzzing and a red warning light flashes on the wall and the therapists leave the room. It’s like a mini evacuation process, except you are the only one left behind while the radioactive light is beamed through you. I always found this bit tricky as I always felt rather alone and isolated. With eyes shut tight, I would breathe deeply and surrender to the medicine, letting it do its work.
During treatment the radiation therapist continuously watches the patient through a closed-circuit television monitor. There is also a microphone in the treatment room so that the patient can speak to the therapist if needed. Port films (x-rays taken with the treatment beam) or other imaging tools are checked regularly to make sure that the beam position doesn’t vary from the original plan.
Information I was given for my radiotherapy treatment from Parkside
The buzzing sound that resonates from the machine as it radiates through the skin is loud and bloody annoying! As I would lie there feeling like some kind of cardboard cut out, I would do some visualisation. I learnt a lot about the use of this during my periods of treatment. It was so important for me to take myself out of the clinical environment and imagine fluffy and positive things! I would visualize the rays successfully burning any rogue cells away some days and others I would like to imagine lying on a beach while the light would be the sun shining down on me and filling me with glorious white light, while ignoring the harsh buzzing that I would pretend was an aeroplane flying over or something equally as irritating!!! The imagination ran wild!
The high-energy radiation used during radiotherapy permanently damages the DNA of cancer cells, causing them to die.
Nearby healthy tissues also suffer temporary cell damage from radiation but these cells are usually able to repair the DNA damage and continue growing normally.
This time around my side effects were a lot more obvious. As the treatment affected the sternum and bottom of the throat area, I did find it hard to eat after a couple of weeks. I wrote in my diary two weeks after starting;
‘My chest is feeling dry today and Ive noticed when Im busy or tired, like often in the early afternoon, my throat and chest feel sensitive, sore and dry. The skin is a little red and sore and Im much more aware of it…… I feel a bit frayed around the edges’
– Diary 18th September 2012
I remember that eating a chicken curry took an hour and not because it was spicy! It felt like I was swallowing rocks. I had embarked on a mindfulness course at The Haven and we had to do an exercise about eating mindfully. This, for me, was not a problem while undergoing radio on this area and I could use the time chewing relentlessly to ponder all things mindful before swallowing and wondering why I hadn’t just made soup!!! I was quite sunburnt on my chest and shoulder bone behind and a small cold turned into a painful chest infection since it went straight to the weakest area of me, but with doctors on hand and nurses checking up on me every day, I could take medication to help more affectively than normal and advice was simply to just take it easy. Always easier said than done! It was tiring, trying to have as normal a routine as possible with a new home, village and small child, while the anxiety and side effects bubbled under the surface, literally!
Despite all this, I met some amazing people while waiting in that corridor. I realized that there is so little written about radiotherapy from a patients point of view, and what it involves. I wanted to share that with others because even though it is part of a cancer treatment, it is an incredibly clever, complex treatment that is so much less invasive and though more clinical than chemo it tends to be more straight forward and less time consuming on a daily basis then one may imagine. Bizarrely, there was another young girl who it turned out I had been to sixth form college with and we would reminiss about our media trip to Paris and often comment on how we felt so young in that corridor. It was wonderful having her around and she gave me great strength being there to either welcome me out of the session or wave me goodbye as I went in. I felt very lucky to have had a hand to hold during that time.
Any cancer treatment is challenging. Its putting you and your life under a microscope and monitoring you from day to day, in a zone totally out of the comfortable! It can be tedious and the side effects can be taxing but it is there to help your body fight a disease that it cant necessarily do alone. Being in the hospital every day, with all those different patients, taught me that medicine is a wonderland itself. It is constantly changing, improving and saving lives. There is so much going on behind the scenes and I have witnessed this now a few times! It is amazing what it can do and our own individual experiences of it can only prove to us how inspiring it is. As traumatic, frustrating, scary and alien it can be at times, these experiences have enriched my life and made me think so differently. As I write this now and reflect, I only hope that those other patients my path briefly crossed with in that corridor over those seven weeks, are well and happy and that dear Pete finally got his ipad! X