Category: Patient Stories

Everyone at OPA Cancer Charity was delighted to receive a wonderful email from Johanna Smith sharing some very special news — her father, Bill Smith, will be celebrating a remarkable milestone birthday on 13th May… his 90th birthday! 

Johanna shared these heartfelt words with us:

“My father Mr Bill Smith from Alresford in Hampshire has a milestone birthday soon on 13th May. He will be 90 years old. Dad was first introduced to The OPA in 2003 by his CNS Donna at Southampton Hospital and he continues to support the organisation.

He underwent pre operative chemotherapy and an oesophago-gastrectomy 23 years ago. At that time nobody in the family could have envisaged having Dad here to celebrate his 90th birthday. We are grateful and thankful for the skill and care received from the team of NHS doctors and nurses whom we owe everything to.

We hope the OPA will continue for many years to come helping patients and their families navigate through major surgery and living beyond cancer.

This picture makes me smile of my father taken in his garden at home.”

Stories like Bill’s are a powerful reminder of hope, resilience and the life-changing impact of expert care, support and community. We are incredibly grateful to Johanna for sharing this special moment with us and for allowing us to celebrate alongside the family.

From all of us at OPA Cancer Charity, happy 90th birthday, Bill! What an extraordinary milestone, we hope your day is filled with love, laughter and happiness.

We would like to sincerely thank Harvi Mehat for supporting OPA Cancer Charity and raising awareness of oesophageal cancer in memory of Uncle Bal. We send our very best wishes for the marathon.

Harvi’s Story

“This year, I’m running the Vienna Marathon in memory of my uncle Bal, who we sadly lost to oesophageal cancer. He was a kind, down to earth, and much-loved person, and his loss has had a lasting impact on our family. Taking on this challenge is my way of honouring him and turning that loss into something positive.

I’m raising money for the OPA Cancer Charity, a charity that supports patients and families while raising awareness of this often-overlooked disease. Every mile I run is for Bal, and any support would mean a great deal.”

Harvi’s Just Giving page can be found here: https://www.justgiving.com/page/harvi-mehat-1

Carolyn Harrison – Patient & OPA Ambassador

Listen to Carolyn’s inspiring journey with oesophageal cancer, and her ongoing dedication in supporting others as an OPA Ambassador.

My name is Leila; I am a 44-year-old female. I don’t drink, don’t smoke, eat healthily, love spin classes, swimming, and dancing. In November 2024, I was diagnosed with oesophageal cancer.

I was enjoying time with my fiancé and planning a wedding when it all started. My heart started feeling tight in my chest, and it hurt to eat. I’d had reflux before- around 10 years prior, but this was different. It started being painful to swallow food down, and I would cough sporadically too- with no other signs of a cold.

I thought it was my diet, cut down on high fat foods, spicy foods, dairy, meat, tough foods- you name it, I’d probably already cut it out. Each reduction helped at first, but then the heartburn and cough would start all over again.

I went to the doctor who gave me medications for heartburn and reflux, and eventually nausea when that started. I had to keep missing work, I tried Chinese medicine, a herbalist, nothing worked. I knew there was something wrong- but I never thought of Cancer!

My doctor referred me for an endoscopy. I lay down, the surgeon went silent, there was an atmosphere in the room.

When they told me I had Cancer, all I could think of was the way it would affect the wedding, shock turning my emotions off, until I heard ‘chemotherapy,’ then my world turned upside down.

We went away like zombies. I returned to work, trying to live my life as before, but everything and nothing had changed. I felt like I was in a bubble, peoples muted conversations floating round me. I sporadically broke down in tears, in the supermarket, at the pool, in the garden pegging out clothes. I felt so alone and wanted to scream often.

They did more scans and said it hadn’t spread.

I started choking on food and had to stop eating, at the hospital they fitted a nasal feeding tube. It was a big shock, and we were scared, but finally after months of pain eating, I was so grateful for the nutrition. No one likes using a feeding tube, but to this day, I know that tube saved my life.

Soon after, I started chemotherapy. It was hard, but I was glad to make a start at fighting this cancer. I was nauseous, I lost all my hair, including eyebrows and lashes. At times I felt desperate and scared it wouldn’t work. But my family, friends and husband got me through. I never lost hope.

I found OPA online because there is no esophageal support here in Wellington, NZ. I was so grateful! I am English, having moved here at 25. I tapped into the forums to ask questions about cancer. There were always others who’d been through it. What’s more- they cared because they had been through it too.

After my chemotherapy, I got bad gut issues and was so worried about our wedding! But the team got the meds right just in time, my nasal tube removed, and I was able to eat enough to enjoy it. It was a miracle. My family and friends helped, and we had a beautiful day in my mums garden, I wore a fantastic real-hair wig, got eyelash extensions and a dress with a long train. After the darkness, I felt like a princess!

We honeymooned in Northern New Zealand, 4 days after our return, and 4 days after our return, I was taken in for surgery.

The surgery was laparoscopic, so it had less impact, but it took 17-hours! A tricky one as it was so close to my heart and lungs.

I recovered well, but the neck incision got infected, so I endured three more surgeries, many different techniques including vacuum dressing before it healed 5.5 months after surgery.

My feeding tube (inserted during the operation) is out, I am eating soft foods and back to my physical job as a university librarian.

I started moving as soon as I could, even trying to walk with all my tubes and chest box in after surgery! It was slow at first, a few steps up from the house and I needed to rest. But I built strength gradually, my scars are healing, and I am now swimming, doing gym classes and dancing.

Sometimes it was so hard, but I never gave up. My mum made big copies of our wedding photos and posted them on my hospital wall after surgery. Getting married in the middle of Cancer was such an achievement and took a lot of courage- and craziness! That made me feel strong enough to fight this thing.

My demographic, as a young female with no other health issues made me a very unlikely candidate for this cancer. But I am proof it happens- and I have lived through this, because I didn’t stop pushing to get the tests I needed.

I am just so happy to be alive today because I know many don’t have that privilege. That my surgeon was so diligent, a hard worker and always held hope for my survival.

I live each day with gratitude and hope. My body will be different forever inside, but I can eat, sleep, dream and be in the world. I am alive and breathing, a survivor of cancer.

Leila Collier 

Listen to David’s inspiring journey with oesophageal cancer.

Can you remember what you were doing 10 years ago in January 2007? Well I certainly can; I was organising my own funeral!

In the previous September, aged 39, I was diagnosed with oesophageal cancer, after having difficulties with swallowing and was given the 3 possible outcomes: do nothing and I would have 9 months to live; if chemotherapy was the only other option, then I could have 18 months; if I were to be a suitable case for surgery….then who knows!!

I ended up having chemotherapy and then lifesaving surgery at Colchester General Hospital. I thank God, I’m still alive albeit with certain limitations regarding energy levels. I’ve also had to make some quirky little lifestyle adjustments but, in the grand scheme of things, that’s nothing compared to what the outcome could have been!

I always knew I’d do a fundraising event to celebrate 10 years post-surgery and came up with the idea of holding an afternoon tea. On the 21st Jan 2017, 100 friends joined us to mark this fantastic occasion. There was a glass of fizz to welcome all our paying guests then I did a little talk about my diagnosis and treatment. My husband spoke about the support we received from the OPA and St Helena’s hospice based in Colchester. Our local hospice offers therapeutic intervention which is what I benefitted from. The hospice is also a place for the living as well as ensuring a ‘good death’. Attending the hospice empowered me and gave me the confidence to start building a future for myself and my husband, albeit on my long road to recovery.

We also attended the OPA meetings at Guys Hospital where it was beneficial to meet other people in my situation and exchange coping strategies etc. My fundraiser was a way to raise the profile of both these charities because without fundraisers and other forms of giving these charities may well struggle in the future.

Our guests were served a selection of different filled sandwiches accompanied by endless cups of tea using lovely bone china. Numerous homemade cakes were followed by scones with clotted cream and jam accompanied by live background music and lots of chatting and laughter. After an hour or so, the remainder of the afternoon was rounded off with an extensive raffle and an auction.

None of us know what’s around the corner health wise and even if you believe you’re fit and healthy sometimes a curve ball is thrown and you’re trajectory in life changes. As a Christian, I had a lot of prayer and support which got us through a lot of tough times plus I feel my positivity and having had a good wholesome lifestyle helped me come through.

 

Listen to Carolyn’s inspiring journey with oesophageal cancer, and her ongoing dedication in supporting others as an OPA Ambassador.

 

In early 2023 I started to experience what I presumed was heartburn although I had never really suffered with it previously, then swallowing bread became a problem and eventually in March a piece of bread got stuck in my throat and I had to cough it up. This alarmed me so much that I went to the GP who fortunately put me on a fast track 2 week referral for an endoscopy despite my protests as I was terrified of the procedure! 

I had the endoscopy and the consultant told me right away. I will never forget his words. They asked my husband to come and sit with me so I had a suspicion it was bad news and a nurse was holding my hand. The consultant said “Its serious. What do you think it is?” Immediately I said “cancer?”  and he said yes. 

To say we were shocked was an understatement. I was 53 years old, fit, healthy weight, non smoker, even the nurse in the room couldn’t believe it. A few days prior we were cycling 40 miles over the Lincolnshire Wolds on our tandem and now I was being told I had cancer. My husband was a huge support to me. He has a very positive attitude and took time off work to take me to all the appointments etc. 

After that I had a CT scan the next day to see if it had spread then a PET scan a couple of weeks later. It was stage three adenocarcinoma but there was no evidence of further spread to my lymph nodes so following a staging laparoscopy I underwent 4 rounds of pre operative chemotherapy. After just 2 rounds I found swallowing was easier and after I completed the course I was able to eat normally again.

I then had to prepare mentally and physically for the Oesophagectomy. I was an ideal candidate for the robotic assisted operation and I had that on September 5th 2023 at Nottingham City Hospital.

After a week in hospital I returned home and gradually was able to eat little and often. On October 2nd 2023 I was told the amazing news that no trace of cancer was found in my post operative test results, however they still recommended I had a further 4 rounds of chemo just to make sure.

The post operative chemo was really hard going and they had to reduce the dose but I persevered and got through all 4 rounds. It was probably the toughest part of the journey but at least I knew I could look forward to better days. 

Things that helped me throughout the whole daunting journey were the love and support of my husband and my supportive friends from near and far, we are avid travellers and the hope of getting our lives back to doing what we love was a major part of my recovery. I also had an amazing mental health counsellor on the NHS who was invaluable in helping me try and deal with the psychological side of things. 

Since then we have been on 3 cruises, many weekend breaks and have lots more travel adventures planned . I can eat out in restaurants without issue. I usually go for sharing platters or tapas . I do occasionally have IBS type symptoms but these are manageable . I feel very fortunate that I can enjoy life once more . At times I felt like I was the only woman in my 50s with this condition but thanks to organisations such as the OPA I know,  sadly there are others and it helps to be able to connect with people in a similar situation.” – Lisa Hubball 

“In December 2021 I had a phone call from an old boss who had become a long-time friend. He announced to me that he had developed oesophageal cancer. Like a lot of people when it comes to the ‘C’ word unless you are directly affected by the disease you tend to shy away from the subject or bury your head in the sand like the proverbial ostrich. I remember at the time thinking “oh my god, how do you treat that! Can you treat that?”

In May the following year I was on holiday in Greece when I received a phone call from his wife informing me of his demise. Obviously shocked and saddened I continued to recall the good times we had and memories as you do in those times.

You can imagine my absolute shock in October 2023 when I was diagnosed with the exact same thing! It was picked up on a routing annual blood test for diabetes and the only symptoms I had was feeling giddy when exerting myself, which had been ongoing for about 6 months. I put this down to dehydration and didn’t think much else of it. I subsequently had problems swallowing food but never linked the 2 things, I know different now of course. I had always suffered from heartburn to a lesser degree, but no more than what I considered fairly normal as it was easily maintained with off the shelf remedies.

Even until I was diagnosed I never thought it would turn out the way it did. I wasn’t particularly overweight, not smoked for 20 years and still reasonably active. Quite simply I never felt unwell or sick. In fact I often got comments on how well I looked, which I put down to hypertension of which I had been a subscriber for about 10 years.

On Monday the 8th April 2024 I underwent my robotic Oesophagostomy which was a daunting thought. After a few days in ICU and a couple on the ward all wires and tubes removed; off home I went to start to long process of recovery.

I would imagine everyone deals with it in their own way, being single I predominantly needed to lean on my kids and a few close friends. I have to say a half hour call with Graham really helped as well (thank you Graham). A second round of chemo followed and finally 5 weeks of radiotherapy with the ultimate outcome of beating this unwanted guest once and for all. 2024 was a challenging year.

My way of dealing with this unfortunate situation personally was and is to take it one step at a time and try not to become overwhelmed, bite sized chunks worked for me, from PICC line installation to chemotherapy to radiotherapy. There is so much information and learning to do it is easy to become swamped and that just makes the anxiety worse. Another important thing is to take someone with you to the more important meetings as you are bombarded with information. I recall a meeting in the early days where a statement was made and I completely missed it. Luckily my daughter and son were with me and they confirmed what was actually said.

They will tell you “don’t google it” which is one of the best pieces of advice offered. We all know google can be really useful sometimes, but remember there is so much commercial rubbish and nutters out there on the web and socials that it will only worry and frustrate you unnecessarily. If you need to ask a question head for McMillan’s web site or your nominated nurse, and remember no question is too trivial or silly.

Staying positive is so important for you mental wellbeing and make sure you get the support you feel you need as an individual; be that family, friends or the professionals.

Updating this 16 months later (February 2025) I completed 5 weeks of radiotherapy by the end of October and had to wait for the body to recover before having a CT scan at the end of January. I was originally told I would not get the results until the end of March due to staff shortages, but was told to check towards the end of February which I did.

On Monday 17th I got the news “no measurable disease” and after questioning what that actually meant was told there is no trace of cancer now. A bonus of the weight loss following surgery is that my type 2 diabetes and hypertension are gone as well. The new emotion is currently denial, but I am sure that will pass along with the outbursts of difficult to contain tears. I share this not to gloat but to hopefully help explain one person’s journey and what you might expect wherever on the path you are. I wish you well and send loving thoughts.

Finally a shout out for the wonderful staff of the Royal Surrey and the cancer centre that are both absolutely amazing, I don’t have words adequate enough to describe how good they are.”

Andy Eeles
February 2025

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My name is James, and I’ve consistently led an active and busy lifestyle. I worked in construction for years, enjoyed the outdoors, and never thought much about my health until one day, I started having trouble swallowing. At first, it seemed like just a minor irritation—food would occasionally get stuck in my throat, and I’d experience some heartburn after meals. But soon, the problem became more persistent, and I found myself losing weight without trying. That’s when I decided to go to the doctor.

After a few tests, I was told that I had oesophageal cancer. The news hit me like a punch to the gut. I was in my mid-50s, and the last thing I ever expected was to face something so serious. I wasn’t a smoker, didn’t drink much, and had always been healthy. My doctor explained that my cancer was in the early stages.

My Diagnosis

When I first heard the diagnosis, it was hard to wrap my head around it. I kept asking myself how this could have happened to me. My family was in shock, too, but they immediately rallied around me. My wife, Katy, especially, became my rock. She made sure I had all the information I needed. She contacted the OPA Cancer Charity, and they provided tremendous support. At the time, I wasn’t sure how I’d get through it, but the support from my family and this charity kept me grounded.

My Treatment Plan

My treatment plan involved a combination of surgery and chemotherapy. The goal was to remove the tumour and ensure that any remaining cancer cells were eradicated with chemotherapy.

The surgery was scheduled first, and I was nervous about what it would entail. I knew it was my best chance for recovery, but that didn’t make it any less intimidating. The surgery went well, but the recovery afterward was tough. I was in a lot of pain, and swallowing became a huge challenge. I couldn’t eat solid food for a while and had to rely on liquid nutrition to get by. It was a difficult adjustment, but I kept telling myself it was temporary—just a step on the path to healing.

Chemotherapy and Radiotherapy

Once I’d healed enough from the surgery, it was time to start chemotherapy and radiotherapy. To be honest, I wasn’t sure what to expect. I’d heard the horror stories of how difficult it could be, and I was nervous about the side effects. The treatments were exhausting—nausea, fatigue, and the feeling that I was constantly drained. There were days when I didn’t know how I was going to make it through the next round, but I kept pushing myself. The helpline at the OPA was a true lifeline for me. I was able to connect with a patient buddy who had been through a similar experience, and it made all the difference.

Post Treatment

I remember the day I got that news that my cancer was in remission – it felt like a weight had been lifted off my shoulders. But as relieved as I was, I knew the real work was just beginning. I had to regain my appetite and adjust to life after treatment.

Swallowing was still difficult, and I had to learn to be patient with my body. Eating small, frequent meals became my new normal. My doctors worked with me to adjust my diet, and slowly, I started feeling more like myself again. I found the OPA literature beneficial.

Looking Ahead

As the months went by, I started to appreciate life in a whole new way. I took nothing for granted anymore. Every day was a gift, and I was determined to make the most of it. My family and I made plans—small things, like walks in the park, little trips away, and cooking meals together. Things I used to do without thinking now felt like a celebration.

I’m still here, still fighting, and still grateful for every moment I have, and this experience has taught me the true power of strength and the importance of never giving up.