Reality Vs Reality

After spending the whole of last year regularly writing and sharing my experiences I found myself in a place were I could no longer write.  I didn’t want to share any more.  I couldn’t cope with the responsibility that I had bestowed on myself to keep telling my story.  I felt suffocated by it.

I have suffered from overwhelm, denial, feelings of inadequacy and worry, all the worry about everything and anything you could possibly worry about.  There, I said it.

For someone who is openly and loudly ‘positive’ and ‘optimistic’, I’ve felt totally flat & convinced it was all about to go wrong.  I have continued to seek opportunities to pull myself out of the pit but with each new opportunity I have just added in to the worry bucket.

It might be hard to believe from the outside. If you’ve bumped in to me in real-life I would have proudly told you that everything is fine, that things are pressing on well with Jack’s treatment (they are!) and that I am excitedly working on my ‘not-for-profit’ project.  And that is all true but underneath the busyness, I have not ‘been myself’.  I’m pretty good at dressing myself up to match the persona, as you can see below.

I shared my life warts & all through last year, via this blog and on my social media channels, I don’t think I truly connected to what was happening around me.  At first writing and sharing everything was cathartic.  But as more people read and engaged with it I feel like I lost connection with my reason for writing to begin with.  I felt I was writing to entertain people.  I was screenwriting a soap opera.

Self-care is something I actively promote and encourage other people to do but I am not always putting it in to practice myself.

A friend sent me a quote that said ‘don’t forget to check on your strong friend’ and she is one of only a small handful who actually has. I have told her when I am not OK and she has guided and encouraged me out of the hole.  She has given me right royal bollockings over my need to practice what I preach too.

The thing with being described by others as ‘positive’ and ‘strong’ is that it creates an expectation internally that you must always behave that way.  I have learnt that it’s alright to tell people that actually, I’m not feeling that strong at the minute, I feel a bit exhausted. I could do with a break.

So over the last couple of weeks I have been participating in a daily meditation challenge.  Admittedly I have missed a couple and done two at once, but taking that 15 minutes (nearly) EVERY day to just breathe has helped to clear some of the fog.  I had reiki from an amazing healer who knew I was holding something that needed to be shared, thank you Zarra for helping me to release that energy.  I have also been training for a 10K charity race; running about 3 times a week has not only improved how I have felt in my body but also in my mind.  The combination of these things has been a source of therapy, and has helped me work through these feelings and thoughts.

I’ve realised as a result of the last few weeks working on myself that I need to have a conversation with a professional about how I’ve been feeling. Although I can see through the fog a bit better in this moment, there may well be a patch ahead that I’m not prepared for. I’m completely OK with this, I don’t need to pretend that I can manage if I feel like I can’t.  Nobody is going to think anything less of me nor is it going to impact my ability to help and inspire others.

Self-care is a priority and a necessity.

It’s OK to not feel OK and to tell others.

 

 

 

 

 

 

The Positivitree

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This is The Positivitree.

4 years ago our friend & Jack’s childminder Dawn, along with some friends at the playgroup put it together instead of the usual ‘get well soon’ card for Jack.

On the New Year’s Eve of that year we spent a full and stressful day at Royal Manchester Children’s Hospital and due to a sequence of errors the MRI scan that was supposed to tell us how Jack’s treatment was going was cancelled. I remember feeling so flat and fed up.

A couple of weeks prior Lee and I had been talking about the painting and what it meant. We decided to call it ‘The Positivitree’ because applying a mindset of hope & growth, using some basic skills in self care, had helped us as a family to cope with the challenges the previous few months had brought to our door. A lot of friends and family commented on this ‘positivity’ and we felt the painting put together by Jack’s pre-school friends, really represented that.

A tree starts by a seed being planted in fertile ground.  Trees need food to grow. Trees make their own food from sunlight, water, carbon dioxide and nutrients from the soil. Trees don’t grow beyond their ability to support themselves. During periods of stress they shed leaves, flowers, fruit and branches.

The similarities between the life of a tree and how we as humans grow really connects with me.

On this day 4 years ago I put it ‘out there’ that I would be planting the seeds of my Positivitree for the following year and wishing growth, happiness, health and wealth to all. I’ve done this every year since, today is a bit different though.

Today the seed that was first planted 4 years ago is about to break through the ground for the first time, a little green shoot has appeared and the idea, the story of The Positivitree is close to manifesting in to something much bigger than a social media post can achieve.

Thanks to the conditions being right, the soil being fertile, the roots now being 4 years old and deep in the ground. We are ready to bring the philosophy of The Positivitree to life.

Tomorrow we will submit  some paperwork that will incorporate the idea in to a real life social enterprise. This next year is going to be all about growth.

The Positivitree as a social enterprise,  is a mental wellbeing business which will help the families & friends of children who have been diagnosed with life limiting or life-threatening illnesses.

We are going to do this by empowering parents, carers and children with a ‘self-care tool-kit’ that will enable them to flourish and grow together through their challenging journey.  This will come in the form of group workshops, online content, guided meditations, one to one work with specialist practitioners in holistic therapies and some old fashioned connection with other people who know exactly what you are experiencing.

We are hosting our first groups in Manchester and Liverpool at the end of January and welcome anyone who lives local to these cities (and has a child with any long term health condition) to get in touch.

Thanks to help from a special friend I made this year we have a website up and running, you can contact us through http://www.thepositivitree.com or by emailing rachel@thepositivitree.com to register your interest in participating.  The social media sites will all be live in the coming days.

“Like branches of a tree, we all grow in different directions, yet our roots remain as one”.

The look of relief.

The look of relief.

“Life is different when we discover what is deeply important to us” (Stephen Covey).

Yesterday was Jack’s 12th time in the MRI machine and god knows how many times under the X-ray machine. His last MRI was 6 months ago and so the team at Alder Hey had a good timeframe to review changes in the images and to see how well the treatment had been working.  We are all completely relieved to report that there has been marked improvements on the skull and hip lesions he presented with back in February this year marking the start of his relapse.  This doesn’t change the course of treatment, he will continue to take oral chemotherapy until Spring 2020 when we are hopeful he will ‘ring the bell’ and close door on this chapter of his life.

Unfortunately, one of the drugs he has been taking orally (methotrexate) has made his liver work extra hard and his bilirubin levels are at the point that the team advise to stop treatment to give his body time to recover.  I noticed the whites of his eyes were ever so slightly yellow a few weeks ago and raised it with the team who have been monitoring it since.  He will have bloods again in 2 weeks time which will determine whether they can start administering it again.

A few weeks back in clinic, you might remember me saying he had walked clean in to a door (while walking the corridor with his headphones on and iPad in his hands!) and he banged his face and the area on his chest with his port-a-cath.  Since then it hasn’t ‘bled back’ properly, this is a test the nurses do before administering any drugs in to a port or central line.  We had to go for x-ray to check it was in the right position.  Jack’s consultant had suggested that we could maybe remove his port during maintenance treatment as it’s not needed.  I had asked to wait until the results of the scans yesterday before we agreed.  Jack’s favourite nurse Tash (and the only one who could successfully access his port without him screaming the ward down) had the pleasure of doing the last flush and we told him he could have it out.  As you can see by his face, this meant more than anything to him.  I’d be lieing if I didn’t say I am a little apprehensive about it but seeing his little relieved face made me realise it was the right move.

I’ve just got back from meeting his teacher for parents evening, I honestly couldn’t be prouder.  He is achieving more than many children at his age who don’t have half the perceived challenges he has had since starting school.  He’s excelling in all areas, is popular and caring and has a great attitude to work and school.

Hearing Mr Roberts’ words was a perfectly timed boost for me personally as tomorrow I too am enrolling back at school.  A few years ago Lee and I started to explore the possibility of creating an organisation that would provide support to families and children in a similar position to us.  It’s no secret that we have always approached Jack’s treatment with an air of optimism and positivity.  We felt that this had not only helped us to cope with what our bay was going through but also helped Jack’s ability to cope with the treatment and reciover so well from the bad days.  We agreed that we could show others how self-development and self-care in the form of mindfulness, meditation and other holistic practices could help their families too. We discussed offering one to one coaching, peer to peer support and a safe place to explore feelings and methods of overcoming the psychological barriers that arise when parenting a sick kid.  The aim is that the project will improve the mental well-being of families and patients who are involved in a long term treatment protocol for a variety of conditions.

In April this year I quit my job and applied for a place on The Lloyds Bank Social Entrepreneurs Start Up Programme, in partnership with the School for Social Entrepreneurs and partly funded by Big Lottery Fund.  There were 150 applications; a group interview, panel interview and Dragon’s Den style pitch and I was delighted to be one of the final 20 ‘Social Entrepreneurs’ with a place on this years’ programme.  I have a lot of learning to do but I have the most inspiring mentor in my 7 year old hero, and darling son.  If he can approach life with such vigour and determination (after all the shit its thrown at him so far) then Mummy can buckle up, get her head down and create an amazing social enterprise that will help other families to grow out of their challenges like a beautiful big Positivitree.

Day 30, Childhood Cancer Awareness Month. The Mums.

I had absolutely no idea how this month was going to pan out. I’ve never participated so actively in an awareness raising campaign before. I had totally underestimated the time, the emotion and the energy of would take to do.

I am sat here as an emotionally and physically tired and weak woman. The commitment was a lot greater than I anticipated and I am suffering as a result.

This isn’t a pity party though, i’d go through the suffering a million times over if I knew that the project was guaranteed to make a difference. In fact I WILL go through it again, and again because I am DETERMINED to make a bloody difference.

We have shared 34 unique stories this month of children who have gone through some of the absolute worst that life has to offer. 34 stories exclusively shared by their Mum’s. It wasn’t that I only asked mum’s to share. I asked some private groups which have a mixed membership but it just so happened that it was all women that came forward.

I felt it was only right to honour them in the last post of the month. Their unique experiences in the club nobody asked to join have been seen close to 100,000 times across two social platforms. 35 ordinary women, joining forces in order to share their story and raise awareness and the profile of paediatric cancer. It worked too, we have had interest from the media, we have had people coming out and sharing their experiences too and we have educated other people and each other on the broad spectrum of diseases that falls under the ‘Childhood Cancer’ banner.

I am humbled, grateful and in awe of what we have achieved together and I want to thank every one of you from the bottom of my heart, for helping me to do this.

Some of you had never written or shared your story before and you all did it beautifully.

Some of you have set up charities in memory of your babies, you inspire me to create an organisation that will help parents like you.

I read a quote the other day that summarises this project really nicely “turn your wounds in to wisdom”…..And I think you’ll agree, we absolutely have.

Day 29 Childhood Cancer Awareness Month. Emma’s story; Rhabdomyosarcoma.

As this is the last story I’m sharing for CCAM 2018 there was only one it could be. If you know ANYONE who has been through treatment for cancer in the last few years, regardless of their age, the chances are they had a unified goal. That goal is to ring the end of treatment bell.

I have always admired the Payton’s and we sponsored Bell Number 50 a couple of years ago in memory of my Grandad Terry.

Here is the incredible story of how they used their experience as childhood cancers parents to start one of the best known cancer-related charities in the country today.

Tracey Payton shares today’s story;

“Hearing the words, “Your child has cancer” is unimaginable for any parent. To then be told that they face months, or even years, of agonising treatment is beyond belief. In September 2013, we were told that our beautiful, happy 8-year-old daughter had a rare form of cancer called Rhabdomyosarcoma, which had wrapped itself around her cheekbone. Following this, she endured months of chemo, an 8-hour operation and NHS funded Proton Beam Therapy at ProCure in Oklahoma. At the time of diagnosis, the end of her treatment seemed like a pipe-dream.

Flying to Oklahoma and being so far away from our support network of friends, family and Ward 84 at Royal Manchester Children’s Hospital was a daunting prospect, but we decided to make the most of our time there and started to look on the internet at ‘things to do’ while we were there. It was while we were online that we came across the ProCure ‘End of Treatment Bell’. It was a brass bell which had been placed by a family who were treated there, and everybody got to ring it at the end of their treatment. We couldn’t wait. This was our target; this was our hope; this was our goal.

Emma had 23 rounds of PBT and rang the bell on March 5th, 2014.

When we returned to RMCH for Emma’s penultimate chemotherapy session, we showed Emma’s video to Helen Jackson, the ward manager. She loved the symbolism of the bell and agreed to use it if we had one made. Emma was the first ringer of the bell on April 9th, 2014 when her last chemo ended. We had another made for the Day Case Unit so that children who weren’t having treatment as an in-patient could also celebrate the end of their treatment.

Two months later, we attended a fundraiser and met Diane, who runs the Beads of Courage programme in the UK. We introduced ourselves and told her how much we loved Emma’s beads and how grateful we were for them. Afterwards, we showed her the video of Emma ringing the bell and she offered to help us to place them into children’s hospitals via The Maria Watt Foundation.

In September 2014, we were ready to send out our first bell. Initially, we offered the bells to children’s oncology units, but it soon became apparent that adults wanted to ring them too and so we extended our offer to all cancer wards.

Four years on, we have sent out 175 bells to wards all over the UK, Australia, New Zealand, USA and Dubai. We have raised around £40,000 which has been used to fund further bells. We receive thousands of photos and videos to share on our Facebook page, with such wonderful messages about how the bell gave families something to aim for. We are thrilled that our little idea gives hope to families every day and that it gives them something to aim for. We are forever grateful for the support we received and continue to receive.

Thank you

Day 28, Childhood Cancer Awareness Month. Jack Rogan; Ewing Sarcoma

Jack Rogan

Jack was diagnosed with Ewing sarcoma when he was just 11 years old. Jack’s Auntie, Claire, has shared their story with us to help raise awareness of primary bone cancer.

Jack had pain in his arm since November 2016, which we initially thought to be a rugby strain injury but it became gradually worse.

He would suffer with frequent pain, which was significantly worse at night and at times felt like he had a fever.

Jack’s life has altered completely since he was diagnosed with Ewing sarcoma in 2017. He started high school in September and did all of a couple of days. He has constant hospital admissions and appointments. Jack is currently having treatment and has completed his preoperative chemo, which made him very poorly. In March, he underwent limb sparing surgery at the Royal Orthopaedic Hospital in Birmingham and had his arm bone removed. Following the surgery, he is now currently having further chemo.

Jack’s chemotherapy has made him very ill. He has ended up back in hospital due to infections and neutropenia (Low levels of white blood cells). The limb sparing surgery was a big challenge for Jack as well as the rehabilitation he is currently going through.

Jack has received amazing support from people around him, even strangers, their kindness goes a long way.

I worried about how he would cope with the treatment as even to get blood was an ordeal. Now, he just takes it in his stride, he is so brave and courageous. It is still early days for Jack and he is still battling so his life is changing every day.

When days are dark and incredibly tough Jack gets through it, his strength and determination is amazing! Even when things are incredibly tough he keeps going.

Sometimes it feels like it is ten steps back, but then a little bit of good news comes your way and this keeps you going!

Awareness is so important! Jack had pain in his arm for nearly ten months. He had numerous visits to the GP and Hospital. He had symptoms yet no one picked up on them. My sister, his mum never gave up and kept going….She trusted her instinct and knew something was wrong.

If his cancer had been diagnosed earlier he would have been out of the end of this battle now – instead of still tackling it!

Day 27, Childhood Cancer Awareness Month. Ruan’s story; Malignant Rhabdoid Tumour (MRT)

Ruan James Shaker was born just a few days before Christmas 2016, four days shy of his due date. He came into the world after a straightforward water birth weighing a healthy 9lbs 6oz. Once home he continued to thrive and we felt unbelievably lucky to have him in our lives. His laid-back nature provided an overwhelming sense of calm. He brought a new dimension to our family, which we all (including his sister, Isla) benefited from. While I was pregnant we often talked about how much more chaotic our lives were bound to become with two children, but strangely the opposite was true. Ru centred us. He was a healthy, happy baby and a joy to be around. I know this might seem like mother’s love talking or rose-tinted glasses, but I often commented to Sasha (my husband) how much more relaxed and content I felt. Ru had brought something very special to our family. His big brown eyes seemed so much wiser than their age, and it was somehow reassuring to gaze into them.

Just six short months later came a date that will forever be etched in our families history. Friday 16th June, after three weeks of GP visits, health visitor appointments, out-of-hours doctor visits and trips to our local A&E, we were now in the Intensive Care Unit (PICU) at Great Ormond Street Hospital (GOSH). In the three short days we had been there Ru had already been intubated, had an MRI scan, had a PIC line inserted (for chemo drugs to be administered through) and had his biopsy operation. Already in his short cancer journey we had heard the words ‘this operation is extremely high-risk, we have only had 25 of this type in the history of GOSH’. The biopsy stage is usually relatively straightforward, but because of the location and size of Ru’s tumour the intubation and biopsy were going to bring their own set of problems. The anaesthetists and consultants could not predict how Ru’s airways would cope with intubation. However, there was no decision to be made – as without a biopsy there would be no diagnosis, and without diagnosis we wouldn’t know which beast we were facing. The operation went ahead and Ru surprised everyone by coping remarkably well with it all. At 7pm the following day we were taken into a meeting room to hear the results. Nothing could have prepared us for what we were about to hear. Not only did our beautiful Ru have a malignant tumour in his chest, but an extremely rare type of paediatric cancer with very little information available and a ‘dismal prognosis’. Cases of survival were in the vast minority.

The next few hours went by in a blur of disbelief, anger and tears. Early the following morning we woke after a couple of hours of broken sleep and headed back to the hospital, knowing that our son needed us and we needed to fight for his chance of a future, no matter how slim that chance might have been. In the two months that followed – we armed ourselves with research, schooled ourselves in medical terminology and threw ourselves into a world of consultant meetings, intensive care and chemotherapy treatment. We spent only a few short weeks on the oncology ward, as most of our 10 weeks in GOSH were spent in PICU with Ru fighting the secondary problems that the tumour was causing. He had an emergency operation with the hope of resecting the full tumour, but it wasn’t possible and it fell to chemotherapy to try and get rid of the remaining bulk.

The tumour was stabilised with chemotherapy but our consultant believed that the deterioration in Ru’s lungs was a clear sign of disease progression. His breathing was getting much more laboured and he was needing more and more oxygen to keep his lungs inflated. Devastatingly in the early hours of Wednesday 16th August, his little body had been struggling for too long and he could not carry on. Ru’s oxygen saturation crashed, and though the medical team tried to revive him there was nothing more that could be done. Our beautiful son took his last breath in our arms, in a hospital room surrounded by love, in the same way he had come into the world just eight short months before. I will forever remember the deep sadness that moment brought, from that day on our lives have changed and our son had been robbed of his future.

Ruan was a complete gift to us and his future should have been laid out in front of him for him to explore and for us to enjoy. Although he was just a few days shy of 8 months when he passed away, I know that our beautiful boy was thoughtful, kind and the most loving son I could ever have wished for. I will forever cherish every kiss, every cuddle and every minute of his short life. I will remember how he would look up at us, his eyes filled with love, holding your gaze for as long as you would let him.

The months have passed by in a blur of grief and attempts at readjustment to life. These months have taught me that like Ru, our grief will always be part of our family now, present in the happy times as well as the sad. Emotions may come and go and some days are harder than others but I also know that we owe it to Ru to try and help fight this battle, for him and all the children still fighting this cruel and indiscriminate disease.

Our lives have fallen into three categories, before cancer, during cancer and after cancer. Every day brings its own challenges but we are determined to remember Ru in all that we do and to give his sister the best possible childhood. My hope is that in setting up a fund in Ru’s name we might help families like us who get thrown into a battle with a paediatric cancer. We do this to support the great work that Grace Kelly Ladybird Trust are already doing and in the hope that other families will have some light to aim for and a chance of a future with their children and free from cancer.”