‘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!!
Who are we?
Our names are Dympna and Helen and we are professional organisers and declutterers (I know sharp intake of breath!). We set up Your Space Sorted and working together, we help people who are overwhelmed, clear their spaces. It could be their business space, in their homes or just the under-stair cupboard. We help people get organised, we love doing it and here’s why…
Why did we start?
Door one: Introducing Helen
I was living in Edinburgh with my husband and my daughter age 5 and my son aged two. We had moved four times since my daughter was born, taking with us the same boxes from house to house! The reason I knew this was that each time we sealed a box, we wrote the date on the box. The oldest unopened boxes dated back to November 2009!
My son had finally been given a place at a lovely nursery a few mornings a week and a good friend who lived up the road gave us a lift to drop my son off while her own son was at nursery. We would often sneak off for a cuppa but inevitably had chores to do at home as well. Before dashing through our separate doors, we would check each other’s plans for those precious few hours. My friends reply was usually a bit of house work and putting her feet up to watch a film, my reply would often be I’m going to sort through a few things and tidy up. One day after our usual check in with each other and clearly my too often reply, my friend retorted “I really don’t know what you have to sort all the time!” more or less chuckling to herself!
That was the trigger – that was it-why was I spending so much time on “stuff “! I started reading books about decluttering dipping my toe into minimalism and began to purge our belongings-I wasn’t going to waste a moment more of my “me ” time tidying away and sorting through things and I felt passionately anything we didn’t need some else would use and appreciate. I had no desire for the cream coloured perfect show room – I just wanted a simpler life where my belongings didn’t own me! The more things we let go of as a family the happier I felt – I could feel the strong connection between freeing my physical space and my mental space almost immediately.
I met Dympna shortly after one of our many moves and even after, we moved away again, we kept in contact and spoke often. Time and time again our conversation would turn to best way of organising things. How could we manage our homes better? It was so clear Dympna was on the same road as me ………
Behind door two: Dympna
First, I wanted to say I’m no neat freak, I’m not OCD about cleanliness or even that naturally tidy, but I have always been organised. In my city job I set up offices, systems, managed people and things.
However, I had a wakeup call when I found it hard to leave my house with a tiny baby in tow, feeling blocked in. I couldn’t go out without tripping over or things falling on me. I became frustrated with no energy, incapable of thinking straight, couldn’t remember the word for ….. and unable to do basic tasks. Still recovering and being exhausted from no sleep and all the new challenges of being a mum, I was shocked at how difficult things had become.
In the beginning, I couldn’t understand why it was so hard, I never had problems with sorting things out and achieving in my job. Then I realised I had never spent so much time in my home as I was always out early and back late. If I needed something quick and on the run, I would just get it. I had never devoted any time to setting up our home to work well for us. It was just a place to store our things not a place to live in. I found being more confined to home and with so many new items inevitably coming in, I began to feel overwhelmed. It was hard to do all the activities I needed to do on a daily basis because either there was no system or routine or too much stuff to manage. For example, the old me would: if I hadn’t made lunch that day, just buy it, on the way out, or if someone was coming over I would shove things in cupboards and pray the door would stay shut or if I hadn’t got around to laundry, get a new top on way home from work, not a sustainable or viable option for me now. My home had been neglected I had never reviewed the things in it, as I would have done at work – I started to ask myself questions. Is this working for us? do we use it? what is it? do I even like it? I met Helen shortly after having my second daughter and we instantly got on. Even miles apart we would still talk about organising! On a visit back from Edinburgh, Helen told me all about her attempts at reducing down their possessions and I was hooked too. I made a throw away comment about what I would really love to do, would be to help people organise their houses now as we had our own. The seed was sown.
What we now offer?
We simply offer sessions to help you do what we did! We have fun while we do it and help review and reduce your belongings to make your space, your home, completely yours how you want it and it work more simply for you. We help you make room for life.
We hope to join you in the new year for a fun packed work shop, and if you want to get in touch before then please give us a call or drop us a message.
More info and tips can be found on our Facebook page.
You can contact Helen and Dympna at
by Rebecca Deller
So why do I run laughter sessions? I’d love to have a big story behind this but I really don’t.
The fact is I just love having new experiences and meeting new people, I guess in a way it gives me a self esteem boost. Well apart from the disastrous time I learnt to ski but I won’t go into that now, that’s for another time and another blog. So back to laughter. I happened to stumble upon ‘Laughter yoga’ about seven years ago, I immediately felt curious and knew I had to give it a go. I don’t tend to mention the yoga bit as it might put some people off, I’ll come back to this point later.
Right, so here I am heading to my first laughter session, feeling quite nervous and a bit silly. Why am I paying to laugh with a bunch of people I don’t know? I walk in, do the session, have the best laugh ever and walk out again without really talking to anyone – how ridiculous is that? The best way to describe the benefits is that you feel you have made best friends, no communication is required, you just laugh and breathe with each other (the yoga bit) and you feel this wonderful sense of connection that stays with you for hours perhaps days. It’s one of the best feelings in the world. It allows you to be creative and productive, the endorphins rushing around your body make you feel great as though you’ve participated in a high impact physical sport. The health benefits are important to mention too, you sleep better, you reduce stress and anxiety which allows you to deal with life’s challenges more effectively and did I mention it even boosts the immune system!
Photo courtesy of Caroline Hernandez, Unsplash.com
So how does it work I hear you asking? Is someone telling jokes to make the group laugh? I am pleased to say it’s not that at all, as I’m sure not everyone would get my warped sense of humour. Let’s say ‘you fake it till you make it’ – that’s all I’m going to say for now.
I’m really hoping to see you early next year as Sam has suggested running a laughter session for the group. I can’t wait to laugh with all you lovely people, it will be so much fun. And remember if the lead up to Christmas gets stressful remember laughter is a wonderful tool that we have access to anytime, anywhere. It’s absolutely free and diffuses lots of situations, after all ‘Seriousness is bad for your health’
Rebecca is a Life Coach, Laughter Facilitator and Consultant with a passion for anything wellbeing related.
Her website is www.l1febalance.com
Twitter – @l1febalance
Blog – rebeccalifecoach.wordpress.com
Facing chemotherapy hair loss? Read on…
At Suburban Turban we‘ve been designing hats for women coping with chemo hair loss for over 11 years. Our studio started small back in 2006, (my spare room!) I’d been an ‘Ascot’ milliner for 10 years and had never considered designing hats for women at time when they had a real need for elegance and soft headwear. I responded to a friend’s request, a surgeon at Royal Surrey Hospital, to organise a GRACE (http://www.grace-charity.org.uk/) fashion show fundraiser and the rest as they say is history.
We’re now a team of 5 milliners, designing and producing 2 collections a year. The studio moved to just outside Guildford, in Surrey. Here we can create hats right from processing and pre-shrinking fabrics, all the way through to trimming and finishing. As a small artisan company I love the fact that we’re able to bring uniqueness to our designs, selecting beautiful fabrics and hand-finishing trim details. Suburban Turban has become known over the years for our dressy daywear and eveningwear styles, many of which incorporate draping fabric to create shape and volume. We also love developing head wear solutions for specific needs – the non-slip exercise hat (https://www.suburbanturban.com/rachel-sports-chemo-hat.html ) and the realistic hair fringe wig (https://www.suburbanturban.com/hair-fringe-wig-for-hair-loss.html) were created from clients’ requests. If you’re facing chemo hair loss, or know of someone who is about to start chemo treatment, here are a few milliner’s tips to help make the transition with minimal stress.
We regularly hear ‘I don’t like hats. I have no idea how to wear a hat, or what suits me?’ Many of us only wear a hat for practical reasons – warmth in the winter, or shade in the summer. Not enough of us regularly wear a ‘Trilby’ because it’s part of our ‘style look, or a cocktail hat because we want to make an entrance when we walk into a room! Hats for hair loss will need to be worn for much longer periods of time – both indoors and outdoors.
Tip no. 1 – Lightweight fabrics in soft hat styles help make that indoor/outdoor transition easy and avoid overheating. Think trying to wear your bobble hat or ski hat indoors whilst meeting the girls for a coffee – it would look suitably casual, but it would be rather warm to wear indoors. Feel the hat and remember fabrics that feel soft and lightweight in your hand will feel the same on your head. Try to avoid scratchier wool mixes, synthetic fleece materials and linings, felted wool on a sensitive scalp needs a liner, (more of this later).
What’s your style tribe? Are you a casual dresser – a busy stay at home mum with children; an office worker requiring a smarter approach; or somewhere in-between the 2?
Tip no. 2 – Look at hat styles that will easily fit with what you currently have in your wardrobe – caps for casual days – school pick-up, dog walks and supermarket trips. Beanies and turbans for casual to smart or indeed smart office days. Think about colour too – this will make the everyday ‘getting ready to go’ quicker and less stressy. You’ll feel much more confident and in your ‘comfort zone’, if the style and colour feel right.
If I buy one black chemo hat that will work with everything – right? It is understandable to think that black goes with everything, but treatment can change your skin tone. You can look paler and more tired – black only tends to accentuate these characteristics.
Tip no. 3 – Think about deep jewel colours for your hats – they add colour to your skin tone and even on a ‘tired’ day help you to look well. You are going to need more than 1 hat over what could be a 6 month period of hair loss. They won’t get particularly dirty – they may collect a little make-up / perspiration but they will need a freshen up and a re-shape. If at all possible buy 2-3 and ring the changes – your hats will last longer with a rest.
So all hats are the same I just need to pick one up and I’m good to go. Another key difference with hats for hair loss wear is that they need to be cut and made deeper at the back of the head. Sounds obvious I know (!) I know but not all hats cover the back of your head. Winter knit hats will but you may not wish to wear wool knit (or synthetic knit) next to a bare scalp and they’ll be too warm.
Tip no.4 – Look at fuller styles like Baker Boy cap, bucket hats, beanies in lighter fabrics, berets – any style that is made fuller so that when you pull it down on to your head it doesn’t ruin the overall shape of the hat and you get enough coverage. Cloches are another good style that sit deep on the head.
Many women (not all) tell us that at the point of total hair loss (sometime around chemo treatment no. 2) the hair follicle is super sensitive and a wig/ headwear can be a real struggle. This seems to last for a week or so and then settle down. We would strongly recommend you plan ahead and have a soft beanie ready for this time. This way you have something to put on and you can wait till this phase passes. You can of course plan ahead – cut your hair shorter, purchase your wig whilst your own hair colour is there for reference, purchase hats for those times you don’t wish to wear a wig. This is all very much down to personal preference and how you wish to manage your hair loss.
We’re here on the end of the phone if you need style help and advice, or indeed if you’re local enough to come and try them on at the studio. Hair loss is one of the hardest knocks of cancer treatment, but there are now plenty of solutions available – realistic textured wigs and stylish headwear. You can take control of your hair loss, reclaim your confidence and feel gorgeous again.
Tel: 01306 640 123
Turban Towers, Masters Yard, Guildford Road, Westcott, Surrey RH4 3NG
© Nicky Zip – October 2017
Breast cancer changed my life in the most positive way!
I was diagnosed aged 35 with no family history of cancer of any kind. It was an instant steep learning curve but one I embraced from the start. I had always been very sporty, ate well and lived very healthy or so I thought at the time. I had always been into health and healing through non conventional ways so it was a hard decision deciding to do Chemo, getting my eggs frozen and doing Radiotherapy. I decision I would no longer personally have taken.
The doctors told me I had no time to decide and I must start treatment instantly. I now regret putting my body through the overdose of toxic chemicals as I believe like a growing number of other people that I could have healed through non conventional western ways. But in going through chemotherapy etc I can now relate to others that go through the same and help educate them in my mission that is dedicated to NonToxic Practice(TM) and prevention of Cancer.
Five years on I run Hello Love. The Home, Studio and Dojo at 62-64 Southampton Row in Holborn London. I set up with Kevin, my Cancer Wingman and partner in crime. It is also the spiritual home of my breast cancer charity the Hello Beautiful Foundation.
Prevention is key! Prevention of a re-occurrence is also so important. At Hello Love the basis of this practice takes place on 3 levels:
Mindfulness and positive emotional awareness as a means to living freely without stress and anxiety.
Organic plant-based diets that are free from animal proteins, processed sugars and genetic modifications. This extends into natural cosmetics
and finding products that have not been laced with parabens, pesticides and other chemical compounds.
Qi Gong, Sound Massage, Meditation and other holistic forms to realign the spiritual center and unify our purpose.
Over the last 5 years I followed this practice and dramatically changed my lifestyle. Its not a quick win it takes time, dedication and commitment but the rewards are immense. The way my body feels and the energy I now have is greater than I have ever experienced.
I started by throwing away all of my cosmetics. I had hundreds of pounds worth of everyday brands like Clinique and Mac make up. So many cosmetics from shampoo, toothpaste, hair dyes and nail vanish contain harmful chemicals including Parabens, Sodium Laureth Sulphate and many harmful detergents. Sadly my hospital prescribed a lot of these to me during Radiotherapy. Instead of helping to release the radiation they suggested rubbing my breasts in Petrolatum laced cream that would not allow my skin to breathe. Luckily my constant research helped me to be knowledgeable not to use what they were prescribing. I’m now starting to make my own cosmetics as nothing is as pure and healthy than knowing 100% what is going into what you use. We even use NonToxic paint at Hello Love so we are not breathing in so many chemicals on a day to day basic.
My food regime has changed gradually over the last 5 years. 3 years ago I would say I was eating super healthy and I am sure in another 3 I will think what I am eating right now isn’t that great. It’s about constant learning and growing and not stressing over anything! If one day you are dying for a cake then have it.
I only buy organic food. I make my own organic muesli on a morning and add some berries. I cut out diary due to the estrogen levels in animal products and I make my own nut milks. Bought nut milks often contain cancer causing emulsifiers and everything you make yourself is better than buying as you know 100% what is going into it. I eat a plant based diet. My plate is always full of colour. There is so much choice, variety and my taste buds are so intense after getting rid of processed foods, preservatives, sugar and meat from my diet. I also love juicing. We have an organic juice bar, tea house and vegan cafe at Hello Love and follow Gerson therapy of cold pressed juices which are full of nutrients and healing qualities.
Finally I focus on my soul. These days I work more than ever but I make sure im never stressed about it. If the train is jammed full I will wait and get on the next one or wait for the next 6 to come before I stress to squeeze on. In other words I go around as stress free as possible.
Being in the moment is key. Not worrying about the past or the future but only concentrating on the exact moment you are in. At Hello Love we offer a range of holistic practices that I practice myself. Meditation, Qi Gong, Sound massage, Gong Baths, Reflexology, Aromatherapy, yoga etc. The more I practice the more I lead a healthy lifestyle to help not only prevent a re-occurrence but help prevent so many illnesses.
I can now say I love every minute of life, the good and the bad and I love all I am learning from my cancer experience.
To contact Jane at Hello Beautiful go to: http://www.hellolovestudio.com/The-Hello-Beautiful-Foundation
The SafeSpace gang will be visiting the Hello Love Studio in Holborn later this year so stay tuned and if you are interested in joining the fun click here: http://samspaces.co.uk/a-safe-space/