Sharing Stories with Matt Eamer - Diagnosed with stage 4 cancer at just 39 years

In September of 2020 Matt Eamer was diagnosed with stage 4 cancer at just 39 years, Matt will join us to share how he managed to find that strength along with a positive mindset to shift his perspective in life and prioritise what really matters in life 💛

In September 2020, after having escalating abdmonial pain and a call with the GP , Matt had been recommended getting an ultrasound done. However, the pain had become so bad that he went straight to A&E.

“I had no thoughts at all that my symptoms could be caused by cancer. At that stage I had very limited knowledge of bowel cancer and it simply felt like something ‘had got stuck’. I’d just celebrated my son’s second birthday and we’d had a barbecue. I joked that I’d probably eaten a bad sausage and was suffering the consequences of overeating!

An scan showed an obstruction in my large intestine. My surgeon explained the need for an emergency operation, and a Macmillan nurse was present during this conversation. They discussed that the obstruction could be cancerous but was not necessarily so.

They took me in for the operation which is where they found and removed my primary tumour. It was probably a week after the emergency operation when I was told that I had cancer. They explained the initial tests had confirmed that what was removed was cancerous and that once I’m out of hospital some form of ‘mop-up’ chemotherapy would likely occur. At that point they were hopeful they’d got everything and the chemotherapy would just be precautionary.”

A week or so after I returned home, I had a CT scan and MRI of my liver. Then some time passed, probably a couple of weeks, before I had an appointment. Despite lockdown having returned at this point, I had a face to face with my oncologist’s registrar. I’m glad it was a face to face as the news shared wasn’t positive. The scans showed the cancer had spread to me liver. I was now stage four. At this point in my diagnosis I didn’t know what a lot of these terms meant - so having some face to face time I was able to find the strength to ask the hard questions”

Wilbur the super baby!

Having cancer throws you into a world of unknown, something you learn to navigate over time. For me one of the largest unknowns was the effect the cancer treatment would have on my fertility. For the first time in my life I found myself sitting in a fertility clinic discussing my options, prior to my treatment. It all happened so quickly but something that myself and my partner had made clear was of importance to us from the beginning. We shared this desire with my healthcare team who at times weren’t always understanding.

It is in such places that you discover there are many options and fertility specialists who are experienced with cancer. However some decisions need to be made prior to cancer treatment so oncologists do need to be made aware early on of any decisions you may wish to make about the future of your family. At a time when it feels so much has already being taken from you the added upset of your fertility potentially being lost is incredibly hard. 

I am extremely passionate about self advocation and empowering yourself with knowledge of your body and the journey you are on with it. Therefore the predict study was powerful for me when navigating the negotiations of fertility treatment/ cancer treatment breaks with my team. Understandably oncologists are nervous when discussing pregnancy after cancer, partly due to lack of up to date knowledge with studies such as predict. After all despite living in a ‘risk’ bubble for the previous two years the balance of life had become really important to me after diagnosis. 

Thankfully my fertility was completely unaffected by cancer treatment, something which I do not take for granted as I am very aware this is not the case for all individuals. Pregnancy was a little more eventful, it enhanced some existing side effects and introduced some new friends for good measure! Some aspects gave midwives some cause for concern but also meant we were monitored closer which bought reassurance. My life is nothing if not eventful.

In July we welcomed our beautiful super baby Wilbur! He fits in like the missing puzzle piece into our lives, motherhood is a gift I will never take for granted. Pregnancy has restored confidence and appreciation for my body, a body that for some time I felt had malfunctioned and failed me. Wilbur is living proof that I can still do amazing things, I am grateful today and always that he is here and has been such a huge part of the healing process. 

Fertility and pregnancy after cancer is not something that is a concern for all, having children is a very personal decision. For those who wish to start and/ or extend their families I urge you to ask the questions, challenge the assumptions and always hold on to hope after cancer. 

Sharing Stories with Kevin Webber - Dead Man Running

Kevin has been a friend of WOLO for a few years now, he has been kind enough to write about WOLO in the Sunday Mirror and we are honoured that he is joining us to talk about his challenges both in health and the fundraisers he has taken on such as ultra-marathons and how he is making the most of what he has.....

Kevin has written a book, Dead Man Running: One Man's Story of Running to Stay Alive is inspirational. Diagnosed with terminal prostate cancer in 2014 and given just two years to live, Kevin started a brutal regime of chemotherapy and radiotherapy.

He also started running and refused to stop. Across the deserts of the Sahara, the snow and ice of the Arctic and the jungles of Cambodia, Kevin's journey has taken him from the depths of despair to achieving the impossible.

Sharing Stories with Kevin Donaghy - Stories Of Cancer And Hope

Stories Of Cancer And Hope is a collection of stories brought together by Kevin Donaghy from people affected by cancer. Here’s Wolo’s zoom chat with Kev.

Each story is a lived experience of the impact of the disease and by sharing our stories, we hope to help people affected by cancer to feel that you are not alone.

A little about us and how we came to be under the loving care of WOLO

What can I say about the team?

What can I say about the team?

Let’s start with how amazingly friendly, welcoming and kind they are!A little about us and how we came to be under the loving care of Wolo:

My name is Catherine, my husband Duncan was involved in a bad motorcycle accident on his way home from work in July 2020. Following the accident, he was hospitalised, he now has metalwork in his leg and ankle and uses a wheelchair or a stick to get around. Duncan has had four different operations over the past three years. Duncan was struggling with increasing pain levels and at the time we were unaware of the true underlying additional reasons for this. In 2021, we contacted Duncan’s GP who put him on more medication as he was struggling to even lift himself out of bed due to the pain in his back and ribs. Duncan’s symptoms continued. Fast forward to May 2022. Duncan’s GP gave him a specific blood test after hearing his list of symptoms, which then within the space of two weeks led to a full body MRI, a bone marrow biopsy and a diagnosis of Multiple Myeloma, which is an incurable blood cancer. We were told that Duncan has cancer lesions in his neck, spine and pelvis. We were told that he would have to start chemotherapy immediately. Duncan had 16 gruelling rounds of chemotherapy, halfway through he was struggling greatly with all the horrible effects that chemotherapy has on your body and he just wanted it all to end. We were told if he stopped the treatment that he would only have months to live. Duncan pushed through to continue the chemotherapy and all of the accompanying medications. 

During this time period, I was looking for any charities that could help us with information and support during what felt like the loneliest, hardest battle. Duncan had already lost his full-time job on medical grounds due to his previous injuries and really needed some hope. I had also been made medically redundant from my full-time job due to needing a couple of operations myself over this period. We have a son Thomas who is now five years old. At the time of Duncan’s cancer diagnosis, he was three years old and had just been diagnosed with autism. 

It was at this point that we then came across Fler and Wolo through a friend of mine who had previously raised money for them and sent me a link to their website. 

I phoned Fler and explained a little about our situation. Fler and Justin then came to our home to hear our story and from that day onwards Wolo have been such a huge comfort and support to us! 

When Duncan had to go to King’s Hospital in London for his stem cells to be harvested, Wolo put us in touch with a family who had already been through this to help answer questions we had. On the way home from the hospital in London having just had his stem cells harvested, we were involved in a car accident where someone drove into the side of us, writing off the car we were in and putting me in hospital in London for a week with my injuries. Wolo stepped in to arrange meals on wheels for Duncan while I couldn’t be there to care for him. Wolo also have arranged for me to receive care from an amazing Chiropractor, Becky, who is also a member of the Wolo family. She has assisted me with ongoing pain management of the physical symptoms I’m still battling so that I can continue to support Duncan who had to go on to have a stem cell transplant, at one point it was touch and go if he would even make it home. Then after a small break to allow his body to get some strength back, he had to go on to endure another 8 rounds of chemotherapy. Duncan has fought so hard to stay with us! 

Duncan’s health had taken such a battering, this along with his lack of mobility or ability to really leave the house, Wolo recently funded a Nutritionalist to help us work a plan to help Duncan. This has been such a blessing as Duncan was recently diagnosed with steroid-induced type 2 diabetes and they have been able to help him find the best diet to try and make sure that this doesn’t lead to more complications. 

Wolo have also provided psychological support through one of the kindest ladies you could meet named Jane, who is another member of the Wolo family. Jane has got me through some really dark days! Just knowing that through Wolo I get to see her each week to discuss everything that we are coping with as a family is such a valuable resource! Jane has helped me to stay positive and has kept me sane and able to focus on supporting our young son Thomas in all he needs and Duncan through his exhausting, painful and emotional cancer journey. 

We have also received practical support from Marcos, who is such an inspiring member of Wolo Foundation. Marcos came and waterproofed our garage wall for us when it was leaking. 

Wolo have also been a support to our son Thomas in so many ways. They gifted him a teddy polar bear when they first met him and he carries it everywhere he goes and hugs it every night. He has been able to attend events put on by WOLO to be able to run around and play with other children who have been impacted by cancer. Due to Thomas being autistic and struggling with being easily overwhelmed along with injuries I have, we needed to find a way to be able to get out as a family but to keep Thomas safe and for Duncan to be able to not worry about us. Wolo stepped in and bought us a wagon. This wagon meant we could go on our first family day out in so long. Thomas was safe in his wagon, allowing me to not have to carry anything which meant I could concentrate on helping him and Duncan who could just focus on his wheelchair manoeuvring and not worry about Tom or me hurting ourselves. 

All we can do is sing Wolo's praises and say thank you from the bottom of our hearts for how much they have supported us as a family. We will forever be grateful for all the things that kind donations have made possible. Wolo have achieved something absolutely amazing, for families like ours to be able to get through what cancer throws at us with support, positivity and hope! Without all that Wolo have done for us, this cancer journey would have been unbearable! 

Please don’t hesitate to donate to support more families battling cancer! Everything I have told you comes from my heart and personal experience of the Wolo Foundation. They as a whole are amazing rays of sunshine at a time when hope and a smile is so precious! They have so many families to look after, but they always make you feel like they have time for you. None of us know how long we have left as a family before cancer takes our loved ones, but your donations really can make such a difference! Wolo really live by their motto of “we only live once,” so we all need to make the most of the time we have and what we do really count! 

My mental health was suffering and I felt disconnected from the world

When I had cancer at age 29 in 2010 wolo didn't exist yet, so when I was diagnosed a second time this year I didn't make contact straight away. However once my surgery had been done I realised all the trauma of both cancers caught up with me and I felt like I had been hit by a train of emotions. My mental health was suffering and I felt disconnected from the world.

I reached out to wolo initially to ask for funding towards some talking therapies. I was so pleasantly surprised by what came back! I was immediately sent a £100 shopping voucher which was such a blessing and a treat. I was also very quickly invited on the wolo wellbeing retreat. I jumped at this as it sounded like exactly what I needed to help me process and recover from everything that had happened.

The retreat itself absolutely blew me away. The location, food, and hospitality of the wolo team was so nurturing and loving from the moment we arrived. Within a short space of time connections were formed within our group- something about our shared experience meant so much was already known without us having to explain it to eachother. The retreat taught me lessons that will forever change me. We learned how to trust our bodies again (so hard after cancer as it feels like your body is your enemy) and use our breath to help connect our minds and bodies.

We worked on releasing trauma and building resilience in the kindest most accepting and gentle way. It truly was utterly restorative for body and mind. As I was so new to wolo I asked what else there was (!!) And was told about the alfriston cabins. We jumped at the chance to go and it was a wonderful opportunity to escape normal life and make time to be together as a family. We were very lucky with the weather on one of our days and were able to spend most of the day walking and enjoying the gorgeous natural landscape together. We honestly feel like we have been given such a treat from wolo. It absolutely blows me away.

Cancer is devastating and changes you forever. But there are lessons and perspectives you only gain from an experience like it, when the floor falls away from under you. It felf after treatment like I had been cut into a thousand pieces. I am grateful to wolo for helping me learn how to put myself back together again.

Thinking About Our Departure From This Life!

We know it’s not everyone’s cuppa tea, talking about when our time is coming to end on this earth, but for some there’s lots of questions, feelings and things we want others to know about what we want and how to do them when we are gone! Katie Costello is joining us to talk about, and guide us though some of the feelings and thoughts we might have around death.

I got my diagnosis of stage 4 prostate cancer almost 2 years ago

Cancer impacts on the whole family; learn how we have been working with Rich and his lovely family.

"I got my diagnosis of stage 4 prostate cancer almost 2 years ago after a very difficult period of physical pain and emotional stress.

We had a lot of sympathy and fantastic help from various charities and friends but soon after the diagnosis my wife and I were introduced to WOLO Foundation.

Their approach was completely different, it felt like community. We met and talked over lunch about life with cancer and how they might be able to help our young family. It felt more like making a friend than joining a charity.

Since then Wolo has helped us with various wellness courses and activities for families as well as little breaks and support when we need it. They understand that sometimes you just need to have a break, a good time or feel supported, at community level, at family level, without it feeling medical.

But most of all I appreciate the little things, the random messages and the out-of-the blue phone calls to check in. Sometimes all you need is that someone out there is thinking of you.

The funds you help to raise will help many families in Sussex on their cancer journeys - thank you all so much for your continued support

Without you we wouldn’t be able to grow and help so many families. So from all of us at Wolo and all of the families we have helped and continue to help everyday - thank you!"

#weonlyliveonce

You can learn more about Wolo Foundation using the link below

www.wolofoundation.org

#weonlyliveonce #wolo #cancer #sussex #lovelife #charity #cancer #inspire #lifeisforliving #localbusiness

'Working with the chefs was ‘the best night of my life' - Tris

Tris was diagnosed with acute lymphoblastic leukaemia in July 2021 when he was ten. It is the most treatable and curable form of childhood cancer but the treatment is absolutely brutal, lasting 3.5 years. Tris is now just about half way through.

When you have a child who has cancer it affects every part of your life and each member of your family in different ways. It has a deep impact emotionally, financially, practically, physically and spiritually.

Wolo’s practical, compassionate, responsive and straightforward approach has meant that we have had access to some much needed practical and emotional help quickly, without having to jump through hoops and according to our needs. This has meant that more of our time can be focussed on caring for and being with Tris and our daughter.

Team Wolo, who are an absolute inspiration, understand just what it means to be affected by cancer and they know you need happy family time, community, practical and emotional support and inspiration.

We have loved coming along to their festival and they offered us an amazing minibreak when Tris was in the middle of the toughest part of his treatment. Every day was beyond tough at that point so to be able to have fun together and reconnect as a family away from the hospital seemed like a miracle.

When Tris was going through a particularly difficult part of his treatment, we reached out to Wolo to see if they could arrange something cooking related to give him something to look forward to and encourage his budding talent. Before we knew it, they had collaborated with another charity to offer him a Michelin experience of a lifetime. We were also linked up with another amazing chef who had just launched a brilliant cookery book.

'Working with the chefs was ‘the best night of my life' - Tris

On top of that one of the trustees family’s fundraised for a woodfired pizza oven for Tris and he has now spent hours perfecting his pizza which is a great distraction for him! These experiences have inspired him and given him more of a focus to create the life he wants post treatment. It has helped him to have the drive to make the most of his talent whilst he is having treatment.

Being supported by Wolo is like being given a big family hug at the time when we most need it. They get the balance between being of great practical help with being positive and inspirational so right.

We understand just how precious life is and WOLO Foundation has helped us in making the most of it, for which we are incredibly grateful.

Statistics show that 1 in 2 people in the UK born after 1960 will be diagnosed with cancer in their lifetime. Life is precious - we need to make the most of it - we only live once - Wolo!

To read more about the work Wolo do and their upcoming events (including the life-enhancing Wolo Africa 100 trek challenge), please visit their website: www.wolofoundation.org

#community #inspiration #help #charity #grateful #talent #cancer #weonlyliveonce #wolo #sussex

October is breast cancer awareness month

I was honoured to be part of this Flat Friends UK - Registered Charity 1168730 photo shoot. All of these women have chosen to remain flat after surgery. It’s a very personal decision, and one that I feel comfortable with. The thought of bearing all was very ‘eeky’, but knowing we’ve all been through a similar journey was empowering, and it felt good (even in the )! Just from looking at the photo, you can see cancer affects people of all ages, shapes snd sizes. I used to have a large chest, and it actually feels liberating to jump around like I just don’t care and not have to worry about them anymore Boobs are overrated anyway - mine tried to kill me, please check yours!

My first thoughts were that posting these photos is the bravest thing I’ve ever done, but actually, I don’t give a toss what anyone thinks. I am surviving and thriving and that’s the bravest thing I’ve ever done. We are all warriors

Thank you to Sam Dade S A M D A D E Creative Culture for capturing me at my finest

As Storm Eunice passes today

We must accept that we can’t change the direction of the wind, but we can adjust our sails to always reach our destination.

We are passionate about our message, passionate about raising awareness. Helping families through cancer.

We are grateful for the endless support... please keep posting, tagging & sharing - it is helping @wolofoundation all corners of the world. Well (Sussex)

www.wolofoundation.org

#mentalhealth #healing #positivity #gratitude #recovery #cancerawareness #mentalhealth #mentalhealthawareness #sussex #weonlyliveonce

Say YES to things

"Life is a blessing and we need to enjoy it doing the things we love, with the ones we love..."

I´m so grateful to be able to share the experiences of Justin Wright , who's family was struck by cancer. They found out the hard way that there wasn’t much help out there for families like them. "We were on our own, and our lives had changed forever" Knowing they didn’t want others to go through a diagnosis and treatment without appropriate support, ignited a little flame inside their hearts - and that’s how the it all began. Wolo stands for ‘we only live once’ and is the perfect way to describe our ethos - to make the most of each day.

Have a listen...

Justin and Fler Wright discuss the moment they received Fler's cancer diagnosis and how they became inspired to achieve incredible things including creating a charity

Justin and Fler Wright discuss the moment they received Fler's cancer diagnosis and how they became inspired to achieve incredible things including creating a charity that has become a lifeline for so many families in Sussex.

Wolo Foundation help families living in Sussex through their cancer journeys. They support them by offering practical help and support to make their day-to-day lives easier. They work with local businesses and communities to offer families a wealth of services to support them through their diagnosis, treatment and beyond.

Having recently battled cancer herself, founder Fler Wright and her husband Justin want to be able to help families going through similar experiences. There was a distinct lack of support available to them due to their circumstances, so they created Wolo to help fill this gap. Wolo currently supports families living in Sussex with children under the age of 18 years. The name WOLO came about as Fler & Justin loved the acronym YOLO (you only live once) and enjoy living their lives with their young family to the full - so they adapted it, and created WOLO - which stands for we only live once.

To date, Wolo have helped families with a huge variety of services. They work closely with their local community to offer families a wealth of services to support them at what is, a very stressful time. Services such as; child care, cleaning, gardening, health and wellbeing therapy sessions (for both adults and children), legal services such as will writing, complimentary therapies to ease the side effects of treatment, and have offered opportunities for relaxation/pampering, memory making by supplying annual passes to local attractions/pantomimes/events, purchased medical aids - plus much more.

During Covid-19 Wolo have adapted their services inline with government restrictions, and have been working with local businesses to deliver isolation packages containing essential food items, fresh food, toys and activity packs to help keep children amused during the shielding/isolation process.

To read more about Wolo, their story and the ways in which you can help, please visit www.wolofoundation.org

Statistics show that 1 in 2 people in the UK born after 1960 will be diagnosed with cancer in their lifetime. Life is precious - we need to make the most of it - we only live once. Wolo!

Enjoy the normal!

This video is very interesting and I could relate to the talk in so many ways. It really made me think about my life post cancer and how things have changed. It’s those little bits in between that make up life - we need to enjoy the normal! Listen/watch it here: TED Talk featuring writer, teacher, activist and cancer survivor Suleika Jaouad "The hardest part of my cancer experience began once the cancer was gone,” says Jaouad.

She has a fantastic attitude to life.

#wolomoments #cancersurvivor #cancerawareness #cancerresearch #cancersupport #chemotherapy #radiotherapy #weonlyliveonce #wolo #cancersupport #healing #mentalhealth #liveyourlife #covid19 #bekind #lifeisforliving #sussexfamily #covid_19 #cancer #charity

All we need is nature

I didn’t know how to open up and talk about how I was feeling, especially when you have children as you encourage them to talk openly about how they are feeling on a day-to-day bases. I wanted to be a role model to them. A rock they can always rely on (unbreakable). Today we made a den with a campfire. We laughed and cried and created some magical memories. We both chatted about school, friends, monsters, mummy, sweets, cancer and cheese. Sometimes it’s the most simple things that can bring joy to our lives. Life is for living. #weonlyliveonce

Every day is equally good and bad, it just comes down to our ability to see it.

Whenever I am faced with something tough I always think about a reason big enough to get me through the day. Most of the time what I think about is my family and good times.

You are healing.

We are passionate about our message, passionate about raising awareness. Helping families through cancer.