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Emerging Stronger: Traversing Endometrial Cancer with Strength and Defiance

25/6/2025

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Having worked as a hospital clinician during the pandemic, I thought I had been through my quota of stress.
How wrong I was…

The back story

At a routine examination in 2021, I was diagnosed with complex endometrial hyperplasia, which is a pre-cancerous change in the cells in the lining of the uterus. This was a shock to me as I hadn’t had any symptoms that I couldn’t put down to the stress of 2020. The 12 months that followed consisted of endless biopsies, hysteroscopies, and waiting for results. These invasive, humiliating, and excruciating investigations were performed without any anaesthesia or pain management, and I was left with severe medical trauma that I couldn’t seem to get over. I assumed that there was something wrong with me to have been affected so adversely, and as time passed I became quite depressed. I spiralled down towards a kind of ‘rock-bottom’, and soon after I emerged with a strong inner calling to seek physical and emotional support. I began to have weekly therapy sessions (something I had always been curious about but never brave enough for), and at the same time I began working with a personal trainer to help me to process the trauma and build some strength and resilience (this part of the ‘calling’ was a surprise to me as I was a lifelong hater of gyms and exercise). Through implementing these changes, I felt like I had something in my life that I could focus on and have some control over. Within a very short time, the positive impact it began to have on my mental health was noticeable and, frankly, unbelievable.
After almost one year, the biopsies finally turned a corner towards improvement, and I was told in October 2022 that all the barbaric monitoring may soon come to an end.

Wrong again…

The plot twist

In November 2022, at an appointment that I thought was for a discussion with the gynaecologist about further treatment options, I received the shocking diagnosis of endometrial cancer. I don’t think I heard her words properly at first. She said that this result was totally unexpected because the penultimate biopsy had finally shown improvement and I didn’t have any of the typical risk factors. She went on to explain that she had asked for the lab to re-test the sample because she didn’t believe it, but unfortunately it was confirmed. She told me that she had known the diagnosis since the week before but had chosen not to tell me at the end of that week as she didn’t want to ruin my weekend. I thought that was such a strange thing to say at the time, but looking back, the longer you can delay leaving the ‘no cancer’ side of the fence in life, the better. It was obvious that she had been dreading giving me the news, and I remember feeling like I needed to apologise for ruining her weekend and for causing her to have to do the worst part of her job.
I was informed that I was now no longer a gynaecology patient but instead an oncology patient. I couldn’t believe what I was hearing. I was told that there was nothing for me to do and that I would be contacted over the next two weeks to arrange various scans and appointments to decide on the treatment plan. My brain was calm, but my hands began to tremble and a tear rolled down my face. She offered me a tissue and a cup of tea but I politely declined. I thanked her (I am not exactly sure why) and I calmly walked out.
Thrown into the unknown

As anyone who has received a diagnosis of cancer will know too well, the very moment that you have been on the receiving end of those words, something inside you dies. You find yourself abruptly shoved into a bleak and unfamiliar place. You are on the other side of a fence that sets you apart from everyone around you and everything you’ve ever known, and there is nobody there to look after you or to tell you what to expect. I had no idea how I should feel or what I should do. I paced around the London backstreets near the hospital, looking at the buildings, the trees, the carefree tourists, pedestrians going about their business, and people on passing buses. As strange as it sounds, it felt as if I was seeing it all for the first time. In an instant it dawned on me that I had permanently changed. I had cancer and nobody knew. How would I tell my family, my friends, my work? Could I just not tell anyone and maybe it would go away? I suddenly realised that I would never have any children. I oscillated between ‘keep calm and carry on’ and being in tears. I went to visit my sister who lived near the hospital. She gave me tea and cake, and we talked mostly about how on earth we would tell the rest of the family.
It was all such a mess, and I felt guilty for causing it.
Leaving my sister’s flat and catching the tube home was a very strange experience. I was on autopilot for a while, going through the motions of being ‘a normal person’ on the tube, but when I was one stop away from home I suddenly
felt the urge to get off and drop in on a close friend who worked in a shop. I wanted to put off getting home, closing the door, and being alone with what had just happened. I needed one more cry and hug with someone first.

By evening, I had received a lot of messages from friends asking how my appointment had gone. They, like me, thought that it was a routine discussion about further treatment. I actively avoided replying to these messages for as long as I could. I didn’t want to upset anyone. I spoke to my parents, and I remember being very vague about what exactly was going on. I couldn’t tell them that I had cancer; I just strongly hinted at it and hoped that they would understand what I meant without me having to say it. I wanted to protect them from the horror for a little bit longer. I somehow managed to sleep that night, probably because every level of my being was so overwhelmed that it just shut down to escape from reality.

I got up and went to work the next day, mostly so that I could be around friends. I was totally confused about how to get ready for work now that I had cancer. Should I dress differently? Should I wear makeup or leave it off? It took me so long to get myself sorted and out of the house that I ended up being late for work, and I was annoyed at myself because I was always on time. I didn’t see any patients that day, I just sat next to our receptionist all day, grateful not to be alone.

Preparing for battle

I had a gap of five weeks between diagnosis and surgery. During this time, I chose to work as much as I could if I felt up to it. Now and then I would need a day off to recover from scans or to get my head around the surgical plan that was going to cause me to be infertile and in instant menopause. While at work, I would be examining a patient or walking around the hospital, and whenever I randomly experienced a cramp I would be consumed by the grief of what the pain actually meant. It wasn’t just a cramp anymore: it was what uterus cancer felt like. I am not sure how, but I would somehow manage to regulate myself and just continue with whatever I was doing.

The strength training routine that I had built during the months leading up to my diagnosis now became my lifeline. My personal trainer decided that our goal was ‘preparing me for battle’, and we pushed harder than I ever imagined. Exercise became my focus, my distraction, a vital outlet for my sky-high stress levels, and a means of physically preparing myself for both surgery and the inevitable sudden onset of surgically induced menopause. I trained with intense focus and determination in the middle of the whirlwind of scans and investigations. While this was all unfolding, I opened an Instagram account dedicated to documenting my journey of training with cancer, in real time, which was a valuable tool to help me to process everything that was happening. I had never had a public account before, and was not at all comfortable about being public about this terrifying, unfolding story about a very personal form of cancer, but I intuitively felt to go with it. To my surprise, I started to receive comments and messages from women who had also just been diagnosed, offering encouragement and asking for advice, and I made some wonderful and supportive connections in the process.

The real battle begins

I underwent a total hysterectomy and bilateral oophorectomy in December 2022. The surgery itself was relatively uncomplicated, which the surgeon said was largely down to the level of cardiovascular and physical fitness I had been working so hard on that had enabled me to process the general anaesthetic so well. She also said she had noticed my abs during the surgery and was very impressed (unfortunately she then had to make numerous incisions through them so they were no more…).
I was relieved that my immediate recovery was smoother than I had feared; however, the post-operative support for managing surgical menopause was totally absent. On discharge from hospital just two days post-op, I asked one of the nurses what I should expect regarding the surgical menopause. I was met with a blank expression and was told that I should let whoever is looking after me know that if I am tearful or angry then it’s normal. I was gobsmacked. At that moment I realised that I would have to find the answers on my own.


I had numerous surgical incisions, the largest one being slightly smaller than a caesarian scar. I couldn’t bring myself to look at it let alone touch it. I found it totally revolting and my only way to cope was to give it absolutely no attention at all. Needless to say, I was not doing any form of wound massage to reduce the long-term scarring (I didn’t even know that this was a thing until many weeks later —another gap in the post-op care instructions…).

I remember not feeling any emotions for the first week after surgery (and being quite suspicious about it), but then the surgical menopause flooded in:insomnia, grief, anger, anxiety, tears, self-loathing, heart irregularities, palpitations, extreme temperature fluctuations ranging from shivering to burning up, a feeling that my bones were vibrating, tinnitus, extremely heightened sensory sensitivity, dry skin, dry eyes, cognitive difficulties, and even a stammer. Depression quickly set in, making everyday tasks, such as feeding myself, enormously difficult. Living alone made the experience particularly isolating, and in hindsight, potentially dangerous. I somehow muddled through, motivated by the hope of one day returning to the gym sessions that I had grown to love, although I feared that I might never be up to that level of activity ever again.
The downward spiral

After three months of rapid deterioration of menopause symptoms and struggling to advocate for myself with my medical team, I was finally booked an appointment at the hospital menopause clinic. I was prescribed a low dose of oestrogen and testosterone replacement. I had a theoretical risk of cancer recurrence with the medication, but we agreed that the benefits outweighed the small risk. Desperate to try anything, I agreed to give it a go. I was told it might take several months to stabilise, so I tried my best to get back to some kind of life in the meantime.

I returned to my demanding, full-time clinical role in a London teaching hospital at just four months post-surgery. Looking back, this was far too soon to get back to a patient-facing role, but I was desperate to see if I could be ‘normal’ again, and being alone all the time was taking its toll. On returning to work, it soon became evident that I could no longer function in the same way as I did ‘pre-cancer’. I was hormone deficient, traumatised, shocked, confused, grieving, and felt like the brain I was trying to use wasn’t mine. I tried my best to muddle through and carry on; however, life became more intense after around two months back at work (six months post-surgery). I began to experience intrusive and traumatic flashbacks to the cancer diagnosis and surgery, which made working in a hospital environment near impossible. Huge amounts of grief would be triggered within me whenever I encountered pregnant mothers or babies (not ideal given my paediatric-heavy clinical role). I hated myself for feeling this way. I felt as though there was something wrong with me because I was unable to feel any joy, and no matter how hard I tried I was failing miserably at ‘getting back to normal’. I did not recognise myself at all. Fortunately I was (and still am) surrounded by family and friends who went above and beyond to offer support in any ways that they could think of, but I felt so confused and ashamed about how I was feeling that I isolated myself from almost everyone. Nobody could possibly understand what I was experiencing (I couldn’t understand it myself), and while all the suggestions and solutions to my problems came from a loving place, feelings of resentment grew deep inside me. The weekly therapy sessions were invaluable during this time, giving me a safe space to access and explore the emotions that I could access, all the while being totally unaware that I was unknowingly stuffing the rest of the emotions so deeply inside me that it would take many months to even realise that they were there.

Nothing changes if nothing changes

After a total of eight months back in full-time work, I made the difficult decision to reduce my hours from full-time to part-time. This change in my work-life balance gave me the breathing space I desperately needed in order to process all of the traumatic life changes that had been thrust upon me. Unfortunately, it also led to significant financial strain that I was not always able to remain calm about. Up came another layer of resentment, this time about living alone, and how unfair it was that the so-called life-saving treatment had left me in surgical menopause, traumatised, and consequently unable to earn a full-time salary to support myself.

In the midst of all these challenges, I managed to get back to my beloved personal training sessions at four months post-surgery. This was a significant milestone for me, and I prioritised these sessions despite my poor financial situation. I was angry and determined to rebuild my strength and my confidence. I had lost over 5kg and had poor bone density, but I was adamant that I would do whatever it took to get my strength back. I had no expectations of myself; however, I did have a large amount of hope mixed with defiance, and I bounced back quite quickly and surpassed my previous strength levels within just a few months. In fact, just six weeks after getting back to my training sessions (five months post-surgery), I stumbled upon a ‘hold the longest plank’ competition in the gym and somehow managed to win with a time of just over 4 minutes! I began to believe that all was not lost and perhaps I could turn things around for myself with the right mindset.
These turbulent months illustrated to me that the medical professionals were only interested in whether I survived, but that wasn’t enough for me. After everything I had been through, I was adamant that I was going to thrive. I had no choice but to get to know, and learn how to look after, this new ‘post-cancer and surgical menopause me’ by myself. As I educated myself about healing and rebuilding, a deeper interest in holistic well-being awakened within me, and before I knew it, I had begun studying for a diploma in Health Coaching with the College of Naturopathic Medicine. To my surprise, my menopause brain was able to take in and retain new information, which I was not at all certain that it would ever be able to do again. The course was totally transformative; it taught me how to support my health from the inside out in a comprehensive yet compassionate way. My diet changed, I swapped plastics for glass, bought non-toxic pans, the list goes on. I started to become the change that I want to see. Ten months later, I was a qualified health coach.

Post-traumatic growth
Eighteen months post-surgery brought to me an opportunity to face yet another layer of healing (and, in my opinion, a significant milestone in my journey); I finally
felt curious about gently returning to salsa dancing, a cherished activity from my past that I had not yet felt healed enough to return to. The trauma left me feeling quite frozen and rigid in my body, and even the thought of salsa had made every cell in my body scream “NO”. I made the decision to work with my fears, and I committed the summer of 2024 to salsa socials. I immersed myself into the salsa community, dancing almost daily, consciously and consistently being present with each layer of trauma that bubbled up to the surface. Remaining compassionate with myself was a significant challenge during this return to dancing, as it brought up a lot of harsh self-talk, which led to another learning curve.

Fast-forward to summer 2025, and I am now two-and-a-half years post-surgery. Life is by no means perfect, and I have accepted that I oscillate between medical anxiety and totally forgetting that anything ever happened. Surgical menopause has largely burned out, largely owing to my lifestyle choices and habits, but still throws in the odd complication here and there, which is something I am still getting used to. Each time I require blood tests or talk of further investigations, another layer of lingering trauma is brought up, and I am getting better at being compassionate and patient with myself and allowing however I am feeling.

That being said…

I am stronger than I could ever imagine.
I have gained over 4kg of muscle, and to the surprise of my doctors, I have not lost any of my bone density despite the expected 10-20% loss of bone mass in the first two years of surgical menopause. I have remained consistent with my personal training sessions, and through my studies I have learned how to eat to support my body. These lifestyle commitments have been a sacred part of my story and remain a priority in my ongoing journey.

I still have weekly therapy, which has allowed me to get to know myself to a depth that I could never have conceived of in my wildest dreams. Through these sessions with my truly wonderful therapist, I have worked through many layers of trauma, and I have grieved and worked hard to come to terms with my infertility. I also seek out somatic and energy healing modalities whenever I feel the need.

I have just returned from my first two salsa festivals abroad and I already have my eyes on the third…! I have a huge amount of admiration and respect for the dance community I am in, and I have made some fabulous new friends who have no idea how important they have been in my journey.

Pay it forward

I am now a qualified health coach, currently in the process of launching my own business so I can repackage my experiences and pay them forward in service to others. My own journey is a testament to the power of proactive and informed self-care and the conscious implementation of better choices and healthier habits. I have remained unwavering in my commitment to strength training, nutrition, and holistic wellness, in addition to learning how to become my own best friend. I learned how to truly nurture myself whilst navigating change and uncertainty, and I am passionate about supporting others to build a long and enjoyable health-span.

My journey is ongoing, but I stand here stronger, wiser, happier, and continually discovering my next self on this unfolding journey.

Reflections and lessons learned
• Prioritise yourself. Not work, not your family or friends, not other causes. It hurts less to focus on them, but you are the one who needs to be supported through this frightening time.
• Surgical menopause is not well understood and can be an incredibly lonely and turbulent experience. Reach out to a charity, a support group, or a social media account for support.
• Making the best choices that you possibly can in terms of diet, exercise and self-care really can significantly improve physical, emotional and mental outcomes in surgical menopause.
• In moments of profound despair, try to notice how you talk to yourself. We tend to be really unkind to ourselves when we feel as if we are failing. Treat yourself as you would treat your best friend, then learn how to actually be your best friend.
• When healthcare systems or circumstances fail to support you, draw upon whatever inner resources—defiance, resilience, stubbornness—you can to advocate for yourself. Ask others for help if you can.
• Coaches and therapists are worth their weight in gold, so don’t be afraid to look for the right one for you.
• Infertility closes a door but provides the opening to infinite alternative paths.
• Take all the time you need to come to terms with the fact that you will not return to the life you once knew. You have changed—and that is a transformation, not a weakness.
• Trauma heals in layers which come up in waves, like aftershocks that follow an earthquake. Again, be kind to yourself as these layers can come up when you least expect them to.
• When trauma is acknowledged, understood, and worked through with the guidance of a professional, it can be a powerful force for growth and eventually supporting others.
• Above all, never give up, even when it feels impossible. Your next future self is ready and waiting for you.

https://www.instagram.com/training_through_cancer/


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My journey with womb cancer by Michele Bell

18/6/2025

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Let’s start at the beginning……

I am one of those people who love to journal every morning, I never know what I am going to scribble down but it’s part of my routine and I enjoy it. I never thought how this daily ranting would help me so much in a difficult time in my life or that I would be here today sharing my mid-life thoughts with you all, but here we are.

ME – My journey with cancer started when I was 52 years old working as a civil servant, enjoying life with my husband David and our furbaby Sookie, married almost 30 years, we love to travel had have been to many places all over Europe in our campervan. I love my family and if you know me, you will know that my little doggy Sookie, rescued at 10 weeks old, is my world, we literally go everywhere together. I took up running 9 years ago in an attempt to get fitter and loved it, joined my local running club where I was the Chairperson and also part of the coaching team. Life was good. I had plans and expectations for the year ahead no health issues and absolutely no idea that a cancer diagnosis was just around the corner for me.  

​November 2022, I was training for Lake Garda Half Marathon when I noticed a very small bleeding; it was so slight I almost dismissed it but I am post-menopausal it was very unusual.
You see, I felt great I ran parkrun every week I couldn’t be ill perhaps it was just a matter of pushing myself. However, very light spotting continued a couple of weeks, no worse but still there.
I called my doctor’s a few days in a row, failing to capture one of the much sought after appointments but that’s ok I told myself it’s not that urgent so I wasn’t too bothered. I had a niggle in my mind telling me over and over to get this checked out and thankfully over the next week I did just that.


Fast forward to March 2023, I had now had tests and scans, still running away 3 times a week training for my half marathon nothing too exciting was showing up so I was very relaxed, the spotting had even gone away all was good. As I was packing my bags for my trip, the hospital called they wanted me to have a day procedure called a Hysteroscopy, it was scheduled for 2 days after I came back. No problem I said I felt great, symptoms had vanished there would be nothing to report, I was sure of it.
Half Marathon medal collected in 
Lake Garda, off I went for the procedure and that is when I started to get an idea things were not as they seemed to me. When I came round the Gynaecologist came to see me whilst I was still in recovery and that is when she told me “You have a tumour, in your womb it may be benign but I am very suspicious of it so I have taken a biopsy”
All I could whisper was, it can’t be I have just ran a half marathon…nobody mentioned cancer but the undertone was very much there.


Monday 24th April. I attended the Ulster Hospital in Belfast where I was told I had Womb Cancer, they couldn’t confirm anything at this point as I needed an MRI to establish what stage and if it was confined. It was like an earthquake hit your whole life and shook it to its core, I didn’t even know what questions to ask, so I didn’t.
That day didn’t just change my life it changed the lives of all those who love and care for me, the worst part of this journey was having to make the call to my elderly parents and my family, telling them I had been diagnosed with cancer. Giving them all this upset and worry filled me with an incredible feeling of guilt it was overwhelming.


I am not alone with a cancer diagnosis, the stats show that 1 in 2 people will have cancer but I cannot tell you, no matter how much family and friends you have in your life the diagnosis stage was one of the loneliest times of my life.

My journal entry tells you how I felt in those early days:
“Cancer, it’s the first thing I thought about when I opened my eyes, I have cancer and then my heart sinks with realisation but it’s only the first week this is very new. Today I have reflected on this and I have decided I will meet this head on, I am not going to hide behind cancer I will embrace it and take my journey to cure it out front. I will tell people so they can talk to me and not talk about me, I will educate other women and show them how we can choose a positive mind-set no matter what situation you face”

And that is exactly what I did, I shared my diagnosis and the details of how it came about, I encouraged people to chat with me, I wanted to feel safe in work and socially, no awkward silences or looks of pity. Positivity breeds positivity I told myself and that was simply how it was for me, while I took each step of the cancer journey one day at a time.
I lived my life as normal as I could working, running and spending time with family and friends, Sookie never left my side my 24 hour support. I learned very quickly that my positive attitude was infectious to those around me and I enjoyed my life as best as I could, negative thoughts and conversations were not an option and I worked hard to dismiss these.


“My head has changed and my chat now is only focusing on my operation and how I can be cured, I am lucky in so many ways and grateful for all those people in my life offering me endless support, wow”
Initially I was told surgery would happen no later than June the MRI confirmed that my cancer was stage 1 and confined, however worryingly the local news was starting to report the backlogs in cancer waiting lists and a telephone call from the hospital confirmed that scheduling my surgery was delayed. This was a difficult time for me I had continued working but was starting to struggle:

“Monday and back to work this morning but I felt too anxious to go into the office and chose to work from home today, work feels very different for me it’s different, unstable and uneasy I don’t know how I will be able to perform my duties now that I have cancer”

“I had my weekly hospital appointment by telephone today no date for surgery, my head is not in work it’s so hard to keep focused I feel like there is all this extra stuff in my life now and I need to find room for it in all that I do. At the same time I need to work and have the routine and normality of it all, it’s tough.”


1st August 2023. I was admitted to the Ulster Hospital for an abdominal hysterectomy all went well, however pathology of the womb reported that indeed my cancer had spread into my womb muscle making it Stage 2 cancer. Internal radiotherapy called brachytherapy would be required, once I recovered and healed from surgery.

Treatment commenced at the end of September where I visited the Cancer Centre at Belfast City Hospital weekly for treatment to be administered. Treatment was very challenging but in my first week of treatment, I proudly took part in the Marie Curie Twilight 7k walk at Shaw’s Bridge with a group of 30 family and friends, we raised £960. I was delighted to give something back, even though my body was hurting, it was an emotional night for me.
Week 2 of the treatment being administered and the radio was on in the hospital and sure enough the DJ called out my fundraising team “Chel’s Squad” for raising money at the Twilight Walk it made my day as I lay there I proudly told the radiographer that’s me you know.

Throughout this cancer journey I have leaned on many people when my legs couldn’t carry me, and in particular my running club who rallied round me in making me feel valued and keeping my spirits up. Compassion and understanding for others going through difficult times in their life is priceless, whilst many cancers are treatable this does not make the journey to cure any easier it’s not only frightening but a very isolated place to be.


A cancer diagnosis changes everything in your life, it puts everything in perspective it teaches you lessons such as, how you must advocate for yourself, find the positivity every day, put yourself first and take time to heal and recover, no matter how resilient you think that you are. You simply do not return to the person you were before the diagnosis and sometimes that is the hardest part of this journey for others around you to fully appreciate or understand.
I am forever grateful to so many people in my life who travelled on this journey with me holding my hand. The amazing staff of the NHS and particularly my own Doctor who red flagged me in those very early days. I was grateful for receiving support from Cancer Focus NI and also Friends of the Cancer Centre who helped me with post cancer counselling and also the physical side of building up my strength… so I can run again.

Running any distance will challenge your mind body and soul but I won’t forget how cancer give me the biggest challenge of my life.
​


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My Womb Cancer Story by P.D.

11/6/2025

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MY NAME IS PAM DAVIES, I AM 62 AND I LIVE IN EAST YORKSHIRE. I WAS DIAGNOSED WITH A STAGE 3 HIGH GRADE SEROUS UTERINE CARCINOMA IN JANUARY THIS YEAR FOLLOWING A WHIRLWIND OF TESTS AND SCANS AFTER VISITING MY GP IN MID DECEMBER 2024.

I HADN’T, OR SO I THOUGHT, HAD ANY TELLING SYMPTOMS UNTIL I HAD AN UNEXPECTED AND FRIGHTENING BLEED IN EARLY DECEMBER WHICH MADE ME IMMEDIATELY CONTACT MY GP.
WHEN SHE EXAMINED ME, I BLED AGAIN AND SHE WAS VERY CONCERNED, REFERRING ME STRAIGHTAWAY ONTO THE SUSPECTED CANCER PATHWAY, WHICH MEANT OVER THE CHRISTMAS HOLIDAYS I WAS SEEN BY TWO GYNAECOLOGISTS AT MY LOCAL HOSPITAL AND HAD MRI AND CT SCANS.
IN EARLY JANUARY, I WAS TOLD THAT I HAD CANCER IN MY WOMB AND CERVIX, AND THAT I WOULD URGENTLY NEED A TOTAL HYSTERECTOMY.

INTERESTINGLY, I HAD BEEN REFERRED TO THE INCONTINENCE NURSE IN OCTOBER 2024, AS I HAD BEEN HAVING ISSUES WHICH HAD STARTED AROUND MAY TIME. THE GYNAECOLOGIST SAID THAT POSSIBLY THE ‘LEAKS’ I HAD BEEN HAVING MAY HAVE BEEN FLUID FROM THE TUMOUR IN MY WOMB AND NOT URINE AS I HAD THOUGHT AND SO I MAY HAVE HAD A HIDDEN SYMPTOM THAT I WAS COMPLETELY UNAWARE OF.


THE DIAGNOSIS WAS A SHOCK AND THE UNCERTAINTY THAT FOLLOWED WAS OVERWHELMING. I HAD COUNTLESS QUESTIONS—HOW WOULD THE SURGERY AFFECT ME PHYSICALLY AND EMOTIONALLY? WOULD I NEED FURTHER TREATMENT AFTER THE HYSTERECTOMY?

SO, ON 29TH JANUARY, I UNDERWENT SURGERY WHICH WENT WELL AND AFTER 5 DAYS IN HOSPITAL, I BEGAN MY RECOVERY.
IT WAS VERY HARD 
WITH MY BODY FEELING COMPLETELY BATTERED BUT AFTER ABOUT 6 WEEKS, I BEGAN TO FEEL ‘NORMAL’ AGAIN AND READY TO TACKLE MY NEXT CHALLENGE.
THE HISTOLOGY CARRIED OUT FOLLOWING MY SURGERY CONFIRMED THAT I HAD A GRADE 3 HIGH GRADE SEROUS UTERINE CARCINOMA AND THAT I WOULD REQUIRE BOTH CHEMOTHERAPY AND RADIOTHERAPY WHICH WOULD START AS SOON AS I WAS RECOVERED SUFFICIENTLY FROM MY SURGERY.
THE TUMOUR HAD GROWN OUT FROM MY WOMB, DOWN THROUGH MY CERVIX AND INTO THE VAGINAL WALL.

I HAD MY FIRST CHEMO SESSION ON 25TH MARCH AND I THINK EXPERIENCED EVERY SIDE EFFECT LISTED DURING THE TWO WEEKS AFTER…
I WAS TOLD BY MY ONCOLOGIST THAT IT WOULD BE ‘TOUGH’ AND CAN DEFINITELY VOUCH FOR THAT! CYCLE TWO HOWEVER ALTHOUGH NO STROLL IN THE PARK HAS BEEN BETTER, BUT THE FATIGUE HAS BEEN REAL I CAN TELL YOU. I HAVE LOST MY TASTE COMPLETELY AND ALL OF MY HAIR DISAPPEARED QUITE QUICKLY BUT I FEEL THAT ALL OF THE SIDE EFFECTS SHOW THAT THE DRUGS ARE WORKING AND THAT MAKES ME MORE DETERMINED TO GET THROUGH THIS AND GET LIFE BACK TO NORMAL.

I WILL HAVE SIX CYCLES OF CHEMOTHERAPY, THREE WEEKS APART WHICH WILL TAKE ME THROUGH TO THE END OF JULY. FOLLOWING THAT, I WILL START SIX WEEKS OF DAILY RADIOTHERAPY. I AM LUCKY IN THAT I LIVE WITHIN 2 MILES OF THE INCREDIBLE QUEENS CENTRE FOR ONCOLOGY AT CASTLE HILL HOSPITAL ON THE OUTSKIRTS OF HULL.
IT TRULY IS AN AMAZING PLACE, THE TREATMENT, HELP AND SUPPORT FROM THE AMAZING STAFF THERE IS SECOND TO NONE AND I COUNT MYSELF VERY LUCKY INDEED TO BE UNDER THEIR WING AT THIS TIME, I REALLY DO.

I WANTED TO CONTRIBUTE TO WOMB CANCER AWARENESS MONTH AS I FELT IT WAS IMPORTANT TO SHARE MY STORY ESPECIALLY REGARDING HIDDEN SYMPTOMS.
FOLLOWING SURGERY, I HAVE NOT HAD ANY INCONTINENCE ISSUES, WHICH SHOWS THAT WHAT I THOUGHT WAS A GROWING 
PROBLEM WITH MY BLADDER WASN’T AT ALL.
ITS EASY TO DISMISS ISSUES LIKE THIS AND BLAME THE MENOPAUSE ETC ESPECIALLY IF YOUR AROUND MY AGE BUT PLEASE GET THINGS CHECKED OUT.
​
IF IT DOESN’T FELL RIGHT TO YOU, IT PROBABLY ISNT.
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My Womb Cancer Story by K.B.

3/6/2025

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Having not been to my GP for in the region of 15 years, I succumbed and sought an appointment for an issue that had not resolved itself for about 4 weeks.  This was unrelated to the final diagnosis. 
The GP asked me to bring a water sample and also gave me an MOT while there.  The reason for the visit was easily resolved but it was thought I also had Diabetes.  This was confirmed during the night when a doctor rang asking me to come in as my blood sugars were dangerously high. 
Eventually he agreed to me staying at home as Diabetes had been discussed earlier in the day and it’s present in both sides of my family so although not an expert, I did have a little basic knowledge. 
Lots of activity followed via my local health centre and after seeing the Diabetic Nurse, she decided to put me on a blood pressure tablet.  My BP was only slightly up and exactly the same as when I had seen the GP but the Diabetic Nurse explained that a controlled BP would help to reduce my blood sugars that were so high. 
The bloods that followed a couple of weeks later identified I was anaemic.  I had never in my life spent so much time at the local health centre and I even questioned the GP as to whether he was looking at the right notes suggesting that I had anaemia.  It was explained to me that as well as being placed on iron tablets, we also needed to establish why I was anaemic and I was referred for an ultrasound.

Both an internal and external ultrasound was carried out and I had a gut feeling I would be called back and sure enough it wasn’t long before I was. 
The Gynaecologist who performed the Hysteroscopy thought it was Polyps or Fibroids and requested to complete a biopsy to help determine the best method of treatment.  I returned for the results expecting to be told the best suited treatment path only to be told I did in actual fact have Womb Cancer at 56. 
A coil was fitted at this appointment and I was passed over to the Gynae Oncology consultant.  I was very overweight at this stage although from the diabetes diagnosis in May to the cancer diagnosis on September 28th, 2021 I had lost 4.5 stones. 
I was then monitored on a regular basis until a decision was made at the beginning of March 2022 to complete the surgery.  On March 21st, 2022 I had a complete hysterectomy.by laproscopic surgery. 
My cancer was identified as being oestrogen based and ever since, I have been going through a surveillance period slightly complicated by a kidney stone that causes some occasional bleeding and doesn’t seem to want to remove itself!

In hindsight I did have symtoms but I just thought I was a woman of a certain age!  Dr Google also told me not to be concerned but knowing what I know now, I definitely had symptoms for quite some time before diagnosis. 
I consider myself extremely lucky that my cancer wasn’t more advanced and feel grateful for the Diabetes diagnosis that eventually led to the cancer diagnosis.
​
I have been encouraged to keep a positive mind ever since the day of diagnosis and now a few years later, I have to say I have turned my life around.  I have lost 9 stones in weight, swim half a mile at least 5 days a week, resumed playing Table Tennis which I played a lot as a teenager and walk at least 10,000 steps daily all of which I would probably never have done prior to my diagnosis.

 ​
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My womb cancer story by WK.

17/6/2024

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I had a difficult menopause with lots of heavy bleeding. I’d had gynaecological investigations done at the time but nothing was found. Everything seemed to settle down and I was looking forward to my retirement.

Fast forward a few years. It was January 2016. I was 62 years old. I had my first grandchild and was sharing the childcare with her grandfather so our daughter could return to work. Life was good.

I was on holiday in Tenerife. I noticed a sliver of blood on the toilet paper after I’d been to the toilet. It was like a hair width. To this day, I’m unsure how I actually managed to see it. I didn’t think much of it. The following evening, the same thing. Another sliver of blood. I still wasn’t worried but I did think I needed to keep an eye on things.

We returned home and I’d not had any more shows of blood. I’m not very good at going to see my GP. I never have been. However, I had a niggle. Something was telling me I needed to get checked out. Thank goodness for that “something”.

I rang my doctor. It was 11th February. When I told them what it was for, they offered me an appointment the following day. I wasn’t able to take that so they gave me the following Monday 15th February. My GP did an examination and said there was some inflammation so he would refer me to Women’s Health at my local hospital. It was my health authority’s policy to refer, as an emergency, any post menopausal bleeding for further investigations.

On 22nd February I attended for my appointment. I had a transvaginal ultrasound which showed an area of thickening on the lining of my womb. I went in to see the consultant who said I needed a hysteroscopy. She said it could be uncomfortable and some women preferred to have it done with sedation but if I wanted that, I would have to return at a later date. I decided to have it there and then. I won’t lie, it was extremely painful. The consultant said she had taken a couple of biopsies but she was sure there was nothing to be concerned about and she discharged me.

I received a further appointment by letter for 7th March. I wasn’t worried. I thought at worst, I would need another hysteroscopy. I went to this appointment alone. I went in the room and there was the consultant, a nurse and another staff member (I later learned this was a cancer nurse specialist). The consultant said, she was very sorry to have to tell me that the samples sent for biopsy were cancerous. She said she was very surprised as nothing at my first consultation had set any alarm bells ringing. The grade was low and that usually indicated it was slow spreading and confined to the lining of the uterus. I was allocated a Cancer Nurse Specialist who I could contact any time. I was given an appointment for an MRI on the following Monday.

14th March (Monday) had MRI. They rushed the results through to the radiologist so he could report on it for my appointment with the Consultant (following day).

15th March (Tuesday) I had appointment for results of MRI from consultant. The MRI didn't show anything as it was such an early stage. He booked me in for a total hysterectomy and both ovaries and tubes. It was my NHS trust's policy to have no longer than 4 weeks between final diagnosis results and surgery.

I had the awful job of letting my family and friends know. After I’d told my children and very close family, I composed an email and sent it out to everyone else. I found it very difficult watching the sadness on people’s faces when I told them face to face. The following two weeks are a blur. I couldn’t eat. I was in shock. I used to watch mindless tv all day, everyday.

1st April I had my pre op and 6th April had my op. My surgery went to plan. I had a follow up appointment booked for 4 weeks later but my Cancer Nurse rang me before the appointment with the results so I didn’t have to worry longer than necessary. The Cancer had been confined to the lining of the uterus only. It was very unlikely to have spread. I wouldn’t need any follow up treatment.

I had check up appointments every 3 months for the first year. Then every 4 months for the second year. Every 6 months for year three and then yearly until till 5 years clear.
I am now 8 years clear and haven’t seen anyone for over 4 years. I had a phone call during Covid just to check I had no concerns.

I nag my friends and anyone else who will listen to go to see the doctor with any concerns, no matter how small or insignificant they may seem. To date, two of my friends have sought treatment because of what happened to me. One of them had polyps that were causing the problem but the other one had to have treatment.

I had quite a lot of contact with my cancer nurse after my surgery. I struggled with my mental health when the 12 month anniversaries came up. It took me about 18 months to get over the memories and start to enjoy my life.
​

Whatever made me break with my usual “ignore it, it will be nothing”, I’ll never know. I will, however always be thankful for it.
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My womb cancer story by JD.

8/6/2024

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My story is short and a good example to get checked out with any unusual symptom. I am Jo and at 57, in November 2023 I was 4 years post-menopause and had been on HRT for hot flushes just over a year.
After a long day at work, I was horridied to see what appeared to be a 'period'. My thoughts were 'how dare they come back, been there, done that & got the T-shirt! HRT fail!' I was run down with a bad cold too and had been soldiering on at work, so I phoned in the next morning and got myself an early appointment at my GP Medical Centre.
I saw the young Nurse Practitioner who also happens to be the Women's Health Expert. She assured me it was probably nothing serious but it needed checking and we selected an appointment for about 10 days later whilst I was there.

10 days later I had internal ultrasound which picked up 'something' so I was offered a smear, hysteroscopy and biopsy there and then or I could come back. Having had birth trauma, years ealier, I wanted it over with as I would be too anxious to come back.
The staff were incredible in helping me through an unpleasant experience that was made worse by the anxiety and flashbacks to 20 years ago! After getting cleaned up and dressed, the Nurse Practitioner showed me the image from the hysterscope and said it looked very vascular. I had to agree it looked ready for 'time of the month implantation' not a shrivelled post-menopause uterus.

I said," what your telling me is the blood vessels are feeding a tumour". She said "Probably, but we won't know for certain until the biopsy comes back."
I was referred for urgent MRI. Unfortunately the MRI results were not back to my Consultant 2 weeks later, so I was given the news that I had a grade 1 cancer (slow growing) in my uterus but they couldn't stage it with certainty.

The Consultant booked me an urgent CT scan before Christmas. I had to wait over Christmas and New Year for the MDT meeting which would decide my treatment. I was called in later that day and relieved to learn I only had stage 1a which meant it was only in the endometrial lining.
I was booked in for a "bilateral salpingo-oompectomy and hysterectomy" (ovaries, tubes, uterus & cervix).

The day before I took my boxing gloves to the gym and pounded the punch bag, tears down my face saying 'F**k cancer' with every punch. I also took a picture (which my daughter said was like the baby meme) to remind me to be strong.

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Later in January I had the operation; was in hospital 3 days but ended up back in after 24 hours - basically I never do well with anaesthetic and started vomiting again!
For me the worse part was the anxiety of having yet another surgery, it was my 5th abdominal surgery & 6th in total!

Also I have an awful needle phobia from childhood, so a month of anticlotting injections was a mental health challenge too.
7 weeks after the operation I had my follow-up appointment. The post-op hystology had come back clear apart from the tumour they knew about, so I needed no further treatment. I was very relieved.
At this point I started to announce why I had been off work and had surgery. Just under 4 months later I started my phased return to work.

​I have shared that my absence was due to cancer and subsequent surgery with staff and students, now that I'm in remission, because I want people to know that if it's caught earlier there's more hope for full recovery.
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My womb cancer story by KF.

3/6/2024

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On day 2 of lockdown aged 42 I got diagnosed with stage 4b cancer of the lining of the womb which had spread!!
It felt like my whole world had fallen from beneath me!!
It was really hard to do my journey in lockdown, going to all appointments on my own whilst my husband stayed at home with the children.
One of the worst things was having to telling my parents over FaceTime that I had cancer and telling family and friends on the phone or by text.

I had an 6 hour op to remove my ovaries, womb, tubes, appendix, omentum, lymph nodes and spots from my bowel and stomach!
I recovered well in hospital for a week and then at home. Once I got the results from the biopsy they took, they were confident they had removed it all, and the cancer hadn’t spread to my lymph nodes or liver which was great news!
The mass they removed from one of my ovaries was the size of a honey dew melon !


I had 6 rounds of chemotherapy; Carboplatin and Paclitaxel.
Chemo was not nice, feeling nauseous, not sleeping and aching all over but you cope as you know it’s doing the job.
I found drinking plenty of water and eating little and often helped even If didn’t feel like it.

I lost my hair 2 weeks after my first chemo, my husband had shaved my hair short but it’s still a shock and painful when it’s coming out in big clumps and I hadn’t expected it to come out that quickly. 
The thing you notice going first is your nasal hair and lastly your lashes and brows.
I wore some great headscarf’s.
And it’s amazing how quickly it starts growing back even if it come back super curly and white !

Nearly four years on I feel grateful to still be here.
The NHS have been truly amazing I have been so well looked after and continue to be, I have age on my side and have stayed positive though out and needed to be for my 2 children and family and I’m sure this attitude has helped.

I now find coping with surgical menopause the hardest and a completely different body and of course that fear of it returning.
But you take one day at a time.
​

My peachy sisters have been amazing support and joining private groups is such a comfort and great source to find information.
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My womb cancer story by JH.

19/5/2024

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​I was diagnosed with endometrial cancer at the age of 53 in March 2021. I was post-menopausal and had been for over a year.
It all started in the October of 2020 when I noticed small amounts of blood when I went to the toilet, not every time but now and again.  As we were in the middle of the Covid pandemic, there were no face-to-face GP appointments, but I did phone them straight away and was told it sounded like a urine infection and I was prescribed an anti-biotic.
The anti-biotics did not help however, and the bleeding became more persistent.  I also started to get some pain in my pelvic area.  As the situation progressed, and I could still not get a GP to see me face to face, I started to become very anxious.  I am a firm believer that we all know our own bodies and know when something is not right, and I knew deep down that something was wrong.  I had lost my Mum in early 2020 so was aware that I was still grieving and put a lot of my anxiety at the time down to that.
After numerous phone calls with my GP surgery, asking for some help, I was eventually sent for a cystoscopy (camera procedure to look at the bladder) and x-rays of my bladder.  I didn’t feel it was a bladder issue but went along anyway and experienced what was possibly the most painful procedure I have had to date.  The cystoscopy was extremely painful for me and showed there were no issues with my bladder, yet the GP surgery still insisted I had a stubborn urinary tract infection.  I suffered with a lot of urine infections whilst menopausal and I just knew this was different.

By the end of January 2021, the bleeding was happening almost every time I went to the toilet and was getting heavier. The pelvic pain was also getting worse.  I phoned my GP one day in floods of tears and just begged them to see me.  They said I could go straight down to the surgery which I did.  A smear test was carried out and they then told me that the bleeding was, in fact, coming from my womb. 

After that I was put on the two-week cancer fast track and was seen in the hospital three weeks later for a biopsy of my womb.  Everything went scarily fast after that.  The biopsy showed a thickening of my womb lining and was sent to the labs for analysis.  Four weeks after that on 4 March 2021 I was called in to the hospital and told I had endometrial adenocarcinoma – which translated as womb cancer, grade and stage 1. 
Despite being given a cancer diagnosis, there was an element of calmness about me.  It had been such a struggle to get seen, to be believed that I knew something was not right, that finally having a diagnosis and a plan to tackle it, calmed me down and made me realise that I was not over-reacting or being dramatic. 
I DID have cancer and I think I had always known that deep down although had only ever vocalised the fear to my husband.

I was in the hospital having my full ‘hysterectomy with bilateral salpingo-oophorectomy’ on 31 March 2021, less than 4 weeks after diagnosis. It was a time of abject fear, pain and uncertainty.  I thought about dying and leaving my loved ones, I thought about my son and how telling him had been the worst bit of the whole experience even though he was a grown man of 33, and I thought about my Mum a great deal and how I wished she was here to talk to about everything.
 

My surgery went well and was carried out through laparoscopy which meant small scars and a quicker recovery time.  I was in hospital for 4 nights, the first night in Intensive Care for monitoring.  Once I got home, I recovered fairly well.  The pain was bad but well managed with tramadol, and I did have a brief 3 night stay in hospital three weeks after my surgery due to an infection.  I was ready for a return to work 3-4 months after my surgery.
The day they phoned to give me the results from the surgery has to be one of the best days of my life.  I was told the cancer was contained in less than half of the womb and they were confident they had got it all out in the organ removal.  This meant I did not need any further treatment such as chemotherapy or radiotherapy.  It was a huge relief and I felt euphoric and tearful for a few days afterwards.  It was great to tell my family and loved ones the good news as I knew they had been concerned for me.

The strange thing about a cancer diagnosis however, is that the euphoria doesn’t last forever.  It is now 3 years on from my diagnosis and surgery, and I still constantly worry about recurrence.  Cancer surgery has left me with lymphedema in my left leg which causes recurrent episodes of cellulitis. This is painful and debilitating and severely affects my mobility.  I have since also had further surgery to remove my thyroid when a lump was discovered and thought to be cancerous – luckily it wasn’t but this surgery has also left its scars and after-effects. 
Although I am still thankfully cancer free at this time, it has affected my life greatly, and I am both grateful to still be here and have come through it, as well as angry at the changes it has made to my life.  I don’t think anyone really understands all the emotions associated with a diagnosis like this until you have experienced it yourself.  It is not the death sentence it once was thanks to research and dedicated medical professionals, but it is life changing and terrifying all the same.  I have been very lucky so far and so many people are not as lucky and that is sad and heartbreaking.  We still lose too many people from this awful disease so I hope the research and good work continues.

I found the Womb Cancer Support UK group really helpful, and the Facebook page informative and also a great source of comfort as it makes you realise you are not on your own in this journey – and it is a journey. 
The best advice I could pass on to anyone going through this is to advocate for yourself until you get answers.  If you think something is wrong, shout and scream until you are heard.  I should not have had to wait 4 months to be seen by a GP.  Also, educate yourself.  I had never really heard of womb cancer and yet I always checked my breasts for breast cancer. 
There definitely needs to be more awareness of gynaelogical cancers, especially when you read the statistics of how many women are diagnosed each year. 

​Spread the word and let other women know what signs to look out for – together we can make a difference.
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It's our Birthday - again!!!

11/4/2024

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13 years ago, on 11th Aprll 2011, WCSUK was created. It's been a long 13 years of supporting those who have been diagnosed with womb cancer and raising much needed awareness of the most common gynaecological cancer, all from my laptop, sat in my kitchen in a small flat on Isle of Bute in Scotland.
If you've been with us since the beginning, thanks for staying around!! 

Honestly, WCSUK would be nothing without the many wonderful #PeachSisters who have joined us over the years.
Some leave when they no longer feel they need support or get the all clear, and others stay around, as part of our private FB support group to offer support to the newly diagnosed who find us.

WCSUK has never been about me - its about all of us. The FB support group is full of wonderful ladies, always ready to offer support and advice and a shoulder to cry on when needed.

Over the years we have raised much needed awareness as despite womb cancer being the most common gynae cancer, it gets very little media attention unlike the more well known cancers like ovarian and cervical.

I have done a few radio interviews, written several articles for our local paper, held awareness events & coffee mornings here on the island, written countless blog posts for other womens health related websites. Many of our ladies from around the UK have done similar things including giving talks, attending events on behalf of WCSUK in Westminster & Holyrood and even appearing on Stand Up 2 Cancer.

We held meet ups in Birmingham in 2013/14/15 where some of our wonderful ladies travelled from across the UK for a weekend of fun, laughter and a fair bit of awareness raising.

We have sent out over 25,000 womb cancer awareness leaflets to be displayed in GP surgeries, hospital waiting rooms, libraries, gyms, cafes, even the ladies loo in a nightclub.

It's been hard work, mainly because my health has been slowly deteriorating over the years, but over the past 3+years it has got much worse so I am thankful that we now have Peaches Womb Cancer Trust on the scene. They are a registered charity (I was unable to take WCSUK down that route due to various reasons) and it's great that Peaches is an all female team of gynae health care professionals based in Manchester who are raising awarness & doing research.

So, I can look back on 13 long years of all things peachy; raising awareness of womb cancer & supporting others who had been diagnosed with it. Having met some lovely people along the way, many only online sadly, but they have still become good friends. 

​Thank you to everyone who has helped to #GiveWombCancerAVoice over the past 13 years.


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14 years......and counting.

26/2/2024

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14 years ago today I found out that I would have to have chemo & radiation treatment after being told before my hysterectomy by my gynaecologist & Consultant that they were 99.9% certain they could remove everything and I wouldn't need further treatment.

The worst mistake I have ever made was to have the treatment that the head of the MDT deemed I had to have because they had found a few cells in the cavity wash after the hysterectomy.

The possibility (certainty) that I would be left with long term side effects was never explained to me and I felt pressured into having the treatment.

Since starting WCSUK in 2011 one of my aims has been to empower women to ask questions and keep asking until they get answers that they understand or feel comfortable with.

I talk a lot about the health issues I have as a result of my treatment to highlight how we are often gaslit into believing that we should just do as we are told and listen to the medics as "they know best".

Over the years I have been accused many times of scaring some women who might be about to start their treatment journey but if it makes them stop and think for a while and ask questions then I feel its worth it.

No-one wants cancer, and no-one wants to think that they haven't done all they could to make sure that it has gone completely but I want every cancer petient to be given full and accurate information about the possibility of long term side effects so they can make an informed decision.

I have said it many times over the past 14 years but had I known then what I know now I would not have had the treatment.
You may think thats its easy for me to say that now but my quality of life has been virtually non existent for many years.

Had I been given all the information before I had the treatment I could have made an informed decision but I wasn't.

I also wasn't strong enough to ask questions which is why I am passionate about empowering others to do what I felt unable to do.
​

#GiveWombCancerAVoice 


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When September becomes June.

29/8/2023

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If you have been with us for some time you will know that September is womb cancer awareness month.
But not any more.
Let me explain.

When we first started back in 2011, we took September as "our" awareness month here in UK, following the lead of our US #PeachSisters who had been using the month to raise much needed awareness over the water.

So every September we have used the month to make plenty of noise about womb cancer & spread the word. I have always believed that womb cancer, as the most common of the gynae cancers, needs & deserves a month of its own.
However in recent years September has been used by some as gyne cancer awareness month, even though cervical and ovarian cancer both already have their own awareness months.

Earlier this year WCSUK was asked if we would be part of a new initiative being organised by International Gynacologic Cancer Society who wanted to make June International Uterine (womb) caner awareness month.
We thought about it for a bit, unsure wether to make the change but then realised that as it was an international thing, it would raise awareness globablly about womb cancer so we got on board with it.

So in 2023, September became June and International Uterine (womb) cancer awareness month was born.
It was great success with groups, organisations & charities from around the world getting involved and social media certainly went very peachy.

So, does this mean that womb cancer awareness will no longer happen in September?
Well no, because we try to raise awareness every day of the year about womb cancer and will never stop doing so.
But its nice to know that there is now a global initiative to raise much needed awareness of this cancer and that by all talking together, we can really #GiveWombCancerAVoice.

As some of you may know, I have been forced to take a step back over the past few years since my health got considerably worse during lockdown and now with my husband having been diagnosed with Parkinsons, I am sadly unable to devote as much time to this cause as before but now that we here in UK have the wonderful Peaches Womb Cancer Trust I know I can leave you in their safe hands.
I urge you to follow them across their social media platforms if you are not already and help spread the word about womb cancer. They are as passionate about raising awareness & supporting those who have been diagnosed with womb cancer as I am.

​So there you have it, the awareness never stops really, but now we can come together in June as a global voice and say #BeWombCancerAware.


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It's our 12th Birthday today!!

11/4/2023

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 11th April 2011 seems a very long time ago now, but that was the day that Womb Cancer Support UK came into existence.
​It was the day that I set up the Facebook page and from then on we have grown into what we are today.

Originally we started out as just a FB page offering support to others who had been diagnosed with womb cancer as there was a lack of dedicated support.
Many of the orignal ladies who joined us had been members of a US FB group and although it was good to have somewhere to be able to talk to others in a similar situation, it often felt like we were on the outside looking in because of the way that our health system differs from the US model.

So, instead of saying "why doesn't someone start a UK group" - I just did it and that was that.
It soon became clear that there was a lack of awareness about womb cancer so the group quickly morphed into a support & awareness group.

The Facebook page was followed by me getting onto Twitter and then making simple Youtube videos to raise awareness. Nothing fancy mind, just simple videos to help spread the word.

Over the years, we have gathered a sizeable following across our social media platforms which now include Instagram and our own website.

The awareness raising is as important as the support we offer to those who have been diagnosed either through out main FB page or our closed private support group which currently has over 400 members and is a safe space for those who seek support, information or just a shoulder to cry on when things get tough.

Some of those who joined us in the early days are still members of the group who have stayed around to offer support to those who are newly diagnosed.

The support that everyone offers to each other is heartening and many of us have become friends, even if it is only online.

I have dedicated the past 12 years of my life to running WCSUK and its been tough at times as my own health is far from good and there have been several times when I have wanted to stop.
But I haven't; because supporting those who have been diagnosed and raising much needed awareness is important to me.
​However, I no longer need to dedicate so much time and effort to doing this as there are now others who are helping to #GiveWombCancerAVoice and I know that I can take a step or two back now in the knowledge that womb cancer is getting the attention it needs and those who have been diagnosed can get the support they need.

We have been lucky to have had the support of some other great organisations like Diane at Menopause Support, Sam at Jo Divine, Neelam at Cysters, Maureen at PCOS Vitality, and not forgetting Eve Appeal & GO Girls both of which are gynae cancer charities.
​Last but not least a big mention has to go to Peaches Womb Cancer Trust which was set up a couple of years ago and is a dedicated womb cancer charity run by an all female team of gynae experts based in Manchester.

Womb Cancer Support UK has never been about me - its about all the wonderful Peach Sisters who have been part of it over the years. Those who reached out to us for support after being diagnosed; those who stayed with us after they got the all clear to offer support to others; those who shared their stories by writing guest blog posts for the website; those who shared their story with local media and gave talks to help raise awareness.
I am forever grateful to each and every one of you for helping to #GiveWombCancerAVoice over the past 12 years.

I set up WSUK because I was scared & lonely when I was diagnosed at the very end of 2009 and I thought there might be others out there who fet the same way.
I was right, there was - lots of them.
Together we became a strong force who helped each other out.
​
#NoOneFightsAlone


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The good, the bad and the frustration: My journey so far by CB

29/5/2022

1 Comment

 
Pre-admission:
In about November 2021 whilst lying in bed one night I felt ‘very moist’ a rarity in someone who had been through the menopause over 10 years ago. A couple of days later I noticed blood, as if I was having a period. More brown than red but even so very unusual and it had never happened before. Surely this wasn’t right, so I rang the doctors, they gave me an appointment that day with a senior nurse practitioner.
I saw Liz, she was lovely, very gentle and kind. She looked internally, always hate this, agreed it shouldn’t be happening and she explained she would do a referral to the local hospital. She had a choice of two referrals. Which one she did I am not sure, but it worked.
Within a couple of weeks of seeing Liz I received a call from the hospital to go for an ultrasound. I was informed to take strong painkillers prior to going. Why?
My twin sister kindly drove me and provided necessary reassurance. An ultrasound was conducted by a nurse and a trainee, after the usual health questions and weight height etc etc. Not painful just a little uncomfortable. They found something!!! They thought it could be a fibrous polyp. I had no idea what that meant or what the next steps were.
Next off down the corridor to see a consultant who explained I could have the polyp removed then and there. Gas and air were available. Never having had children I didn’t even know how to use it. Whilst explaining the procedure one of the nurses uncovered the instruments, fight or flight. Flight. Great words of advice from my sister who fainted in pain at a similar procedure, if you can go in as a day patient, do so. Take heed Carolyn go with your twin’s recommendation. I explained my fears and they offered me the opportunity to have the procedure under general anaesthetic. Off home, no, Pre op checks, total duplication of what I had had done just an hour before. Frustrating but better safe than sorry.
Received a call from the hospital to tell me when to go in as a day patient. When in day case I explained that I am usually sick after an anastheatic, ‘you will be fine’. All went well until I was being wheeled back to the ward and yes, I was sick in the oxygen mask. Discharged home having been to the loo and eaten (two bites of a sandwich). Home and to bed, no pain just tired. Results would be 2 – 3 weeks. Next an appointment for an MRI. Never had an MRI, it was fine, although a little cool. The unit is outside at my hospital and they blow cold air on you.
Received a call at 6pm from the hospital approx. 2 weeks later, an appointment had been arranged with oncology. Eek. OK so was my understanding of oncology correct. Google here I come. Then calls to very close family.
Twin sister attended my oncology appt. We discussed prior to the appointment what I should and needed to ask. Luckily she used to be a nurse so we called on her expertise. Debbie the oncology nurse was lovely asking if I knew why I was there. I explained the call…….that shouldn’t have happened. She gave me lots of literature, a little overwhelming but well worth the read when you are in the right mindset. I still felt positive.
The results showed I had stage 3 cancer, as cancer was found in the polyp and the womb lining. I was being referred for a CT scan of my upper stomach and chest to see if the cancer had spread and for a full hysterectomy through keyhole which had already been agreed with the ????team. (the team meet weekly on a Thursday to discuss each patient, so calls are usually made later on a Thursday or Friday). Call made to car insurance – I had to notify them of my cancer diagnosis. I also suspended my gym membership.
CT scan at initial hospital first thing and then pm appointment with oncology at the second hospital. I was hoping my CT results could be seen prior to my appt. No.
Met with consultant, another oncology nurse and a registrar. They explained that I would be having a full hysterectomy through keyhole surgery, going to the doctors and being referred urgently was a good thing. After the hysterectomy apparently, I would need radiotherapy. Umm, what is that? I explained about my sickness and my fear of the catheter. Lots of reassurance from them and surprise that I was so positive. My main question, when would I be having the op. They couldn’t give me a date. . Consent paperwork signed and an agreement to take part in a trial. Later I found out through a friend that from seeing the consultant to treatment under fast stream NHS should be no more than 30/31 days. Shame they couldn’t tell me that because I felt my life was on hold just waiting for some form of communication from the hospital/s.
A while later I received a letter giving me an admission date (admission was about 28 days after seeing the consultant). I had to ring the ward the night before to ensure a bed was available. I rang at allotted time, no bed but I could go to a different ward and after op either go to gynae if there was a bed or to another ward. Umm. Now I cried. Perhaps it’s the norm but for me I felt I didn’t matter, It wasn’t important. On the plus side a friend had called round on the Sunday with a little goodie bag, essentials. Mints, wet wipes, a magazine, lip balm, hand gel, some tissues and a long lead charger for my phone.
CT results in, 3 nodules seen in lungs two look OK the other they aren’t sure about recommendation another scan in 3 months.

Admission (1st March 2022)
Day 1: The day arrived and off I trotted, alone due to covid restrictions. Went into a day ward and one of the surgeons came to see me, reviewing the paperwork and answering questions. She asked if I wanted her to ring my next of kin to tell them how it went, yes please. That really helped calmed my and their nerves.
Within an hour I was being prepped explaining once again about my fear of the catheter and my sensitivity to anaesthetics. I was assured I would be ok. Next thing I know I am awake and in gynae. Downside of not going to the ward beforehand was my bag was on the floor not unpacked and I couldn’t reach it, nor allowed to lift. Observations initially every 30 minutes and blood sugars taken frequently. I really wasn’t in pain but took the opportunity for pain killers. Not hungry or thirsty at all. But best to drink – note to self, take some cordial if ever I am admitted again. Luckily no visitors allowed and no one in the ward watched TV so it made it quieter which was really appreciated.
Day 2: More obs, catheter removed whilst talking and distracting me, didn’t feel a thing. Thank you. Told I needed to use the loo before I could be considered for discharge and that my urine would be measured, apparently you need to pass a certain amount. As my oxygen levels kept dropping it didn’t look like I would go home today.
Off to the loo, walking or should I say shuffling with the support of a nurse. Gently, gently Carolyn. Went to the loo (different feeling altogether), washed hands, opened door, held onto door jamb, felt a little funny and said I think I need some help. Next thing I heard a loud bang and there are about 6 people around me. I had fainted, never fainted in my life so hadn’t a clue. Dignity out of the window, still only had the hospital gown on. Note to self as soon as you are taken to the toilet take some knickers and your nightie with you.
Hurt my head and my wrist when I fell. (hit metal rail, bidet and floor) They examined my head and already, within a couple of minutes, had a potato size lump on my head. Back to bed, with oxygen. More obs and a visit from the doctor. Next a visit to x-ray and CT scan for my wrist and head. All OK. Took canular out of my hand as that was one of the reasons for the pain in the wrist. (beam me up scotty) Jab into stomach.
Day 3: Still difficulty with retaining oxygen and breathing, it felt like someone was sat on my chest. Oxygen levels kept dropping every time they took me off oxygen. At some point in the day they thought I could have either a blood clot or was having a heart attack. Spray under my tongue to open up my veins, an ECG and back down for a x ray and CT scan plus equivalent of 3 jabs into my stomach. I am totally bruised.
The fluid injected for the CT scan didn’t give the warm sensation it was expected to?? They found I had a lower respiratory chest infection, antibiotics prescribed. Less pain killers requested or taken. Still no appetite. Blood sugars too low. Asked nurse to check down below as it felt very sore – just bruised.
Day 4: Canular started to leak into my tissue, redness in my skin. That canular taken out. New canular inserted. Early shower and hair wash whilst wearing the lovely green compression socks. Much easier to have them peeled off when wet. Now a request to brush my wet hair as I couldn’t due to the canular in my arm (where the normally draw blood) and the large bump on my head. Felt clean, yippee. Still no appetite. But yes gone to the loo,.always a celebration. Now the new canular started to leak into my skin, taken out. Oral antibiotics given. Doctor visited and said probably home in 2 days. Stomach jab.
Day 5: Painkillers and my other meds taken, started to feel very sick, was sick. Registrar came round (8.30 am) and said I could go home today. Yippee. Text to home, should be about lunchtime. Lunchtime came and went………I waited and waited and waited for discharge papers and meds. I got irate as I just wanted to go home. If I had known meds took all day I would have walked very slowly to the pharmacy myself. Eventually they let me go agreeing I could come back tomorrow for the discharge papers and the meds. Note discharge is usually between 7 and 8pm. Felt today that I wasn’t important, if that makes sense. I was going home, nurse even questioned if she needed to do obs. Nurses kindly carried my belongings to the door as no one allowed on the ward. Stomach jab.
Results in about 3 weeks.
Lots of biscuits and sweets brought in for the staff.
Arrived home, cup of tea and bed. Started to itch. Rang ward I have a severe rash……..they will check tomorrow when I go back for discharge papers/meds.
​
Discharge
Back to the hospital for discharge papers and meds. One of the very kind nurses put us in a side room and brought a cup of tea and a doctor. Allergic reaction to the antibiotics. By this time the rash had spread from my neck to my ankles. Different antibiotics given. Husband had to take prescription to pharmacy before it closed at 1pm. Made it. Went home with papers and meds. Back to bed. Over counter antihistamine taken.
Rash not subsiding so call to my GP, photos sent. Prescription for stronger antihistamine, steroid cream and moisturizing cream. Tired but walking further and further, in fact probably too far and back to bed again. At this point the comfiest place was bed, laid down. Sleep was difficult as trying to get comfortable and sleeping on my back was something I wasn’t used to. Still no appetite.
Going to the toilet was different, different sensations altogether. No one warned me of this. A friend lent me a child’s stool so when I sat on the loo my knees were raised above my hips, gravity helps as does stool softener.
Next a trip to the GP, my skin had stuck together and then torn apart leaving it red raw. More cream. Still embarrassed about all this examination.
Not informed of any follow up, will I or will I not be seen again? Jab into stomach required daily for a total of 28 days.

Results
Husband’s birthday, letter received from hospital with follow up consultation a month hence. Call to oncology they will investigate and ring me back. Rang back someone would ring me later the same day. One of the consultants rang, Stage 3 cancer (as it had spread into womb lining from polyp), sentinel nodes clear. That is good news. A referral will be made to Christies for radio-therapy. A copy of the letter would be sent to myself and my GP. Thank you. Calls to family.
A week passed nothing a second week passed nothing received. A call to oncology, they would chase up if I hadn’t heard shortly. A call to Christies, no referral received! Calls to oncology made, going round in circles. Now getting frustrated, again feel my life is on hold. Eventually I received a copy of the letter addressed to Christies now I could ring the secretary and I did, guess what, no referral received! Christies chased this with the hospital, I was told various e-mails went back and forth. Felt like 3-4 weeks had been wasted. I know it isn’t long but when you are waiting everyday to hear something it feels like forever.
Still tired but doing more. Adhering to the rules which it difficult when you are used to doing everything. Only drove after 6 weeks, not because of any pain or feeling I couldn’t do an emergency stop but the need for concentration.
Christies rang, had I received their letter no! An appt was made, the letter being received later that day.

The Christie, known locally as Christies (May 2022)
Arrived early, found where I should be going. A questionnaire next asking for information on my bowel movements over the last 2 weeks. Apparently, it is scored? Next height and weight.
Later than expected I was seen by the consultant who was very pleasant and down to earth. She gave me some literature, explained the procedure, answered questions and gave me an internal examination. I advised her I am very embarassed about putting everything on show. I know they see many women everyday, its just me.
Treatment would be 3 sessions over a 2-week period within the next 3 weeks. Before I left, I saw another oncology nurse who talked to me about a dilator and demonstrated how to handle/use it. It is to be used daily 4 weeks after treatment, reducing its use until 12 months later. The lubricant required can be obtained through my GP……..another embarrassing call to make. And yes, if you want to use a vibrator you can.

Brachytherapy (May 2022)
First appointment in the ‘vault’. Another internal for them to access the size of the equipment required. Laid on the bed, feet at the bottom while they inserted a tube to which they attached the radiotherapy tube. I was then wheeled nearer the machine. Must admit to getting a little upset, more about the embarrassment (its me) and the thought of what was about to happen.
I laid still, everyone left the room, although I was informed to raise my hand if there were any problems, they could see me from another room. Radio 2 played and I drummed my fingers to 2-3 records. I heard some noise, a bit like a pulsing but not loud, and I couldn’t really feel anything.
Everyone then returned (3 staff), withdrew the applicator, told me where the dry wipes were, I could now get dressed and leave (needed due to the amount of lubrication). The initial procedure probably took about 20 minutes. Checking my ID twice, inputting my details into the system etc etc. After effects, just a metal taste in my mouth within minutes of the treatment which lasted about 8 hours. Next time take mints!
24 hours later, second treatment. I thought I would take the staff some goodies, these were greatfully received. (marks and spencer food on site). 2 staff today, one of whom was different than yesterday. Usual – lie on bed etc. Inserted tubing but today it hurt, not too much but enough to made me gasp. A small adjustment was made. Everyone left the room and once again I listened to music etc etc. Again, a metal taste.
Next day I had to rush to the loo…….and two days later I slept for 2.5 hours in the afternoon, decided the adrenaline had worked its way out of my system. At this point no other side effects.
Christies confirmed that once my treatment had ended, they would contact my GP in order to add a lubricant to my presecription.
Last treatment. Must admit to dreading this. Will there be pain again?
In between treatments I chased up my CT scan of my chest and attended to date awaiting results.
Worth noting a couple of things; most communication has been phone calls which can catch you off guard, having to make a note of times, dates etc especially when you could be busy/at work when you take the call. Also, they told me they wouldn’t leave a message unless any answering message provided your full name. If you don’t hear anything chase it, and chase again. If I hadn’t chased my brachytherapy and secone CT scan I still believe I would be waiting.

Luckily, I have remained positive - just frustrated as to the lack of communication on approximate timings. Family have been supportive although not all know everything after losing my brother to cancer last year, sometimes a little white lie in needed. What the future holds, who knows. Which of the three hospitals will monitor me, if they do I have no idea………communication please.

I hope my blog has provided you with an insight into my journey.
Good luck with yours x
1 Comment

My womb cancer story by KU

22/5/2022

1 Comment

 
I am 63 years old and was diagnosed with endometrial cancer in March 2014. There followed months of surgery and treatment.
I had a total hysterectomy at the end of April 2014 and started chemotherapy of two different drugs in June of that year; one drug took 5 hours to administer and one took one hour.
So for six hours every three weeks I underwent this treatment. At first I didn't tell my three children what my diagnosis was. I don't know why, I don't think I wanted to worry them but when it was evident that I was going to lose my hair I had to tell them.
It was a very emotional time and I hid a lot from them. I live in Ross-On-Wye and have done for 18 years. I worked full time as a care assistant so it was easy to hide a lot of the not so nice stuff.
My parter worked away from home so most of the time I was on my own. I had my treatment on a Monday; travelled to Wales which is where I'm originally from and where my family still are.
On a Tuesday and for the following three weeks I squirrelled myself away resting and recovering from the effects of treatment. When I went for my second treatment my oncologist informed me that on a routine ct scan there was a mass in my stomach which was causing them some concern.
My world was falling to pieces. My chemo was suspended and an endoscopy and other tests were carried out through the following week. The mass appeared to be a slow growing tumour, which had probably been there some time and it was decided to continue with my treatment to see what happened.
I had another 5 chemotherapy treatments, 29 radiotherapy and 2 brachytherapy treatments.
In November 2015 I had a total gastrectomy to remove the tumour which had by this time spread outside my stomach.
It's been a long road there have been ups and a lot of downs but I'm still here. Its still not far from my thoughts ever!
I can still enjoy my wonderful children, 12 grandchildren and my great grandaughter,
I'm not very good at putting things down into words and sorry if it's just rubbish
but hope this gives someone somewhere just a little hope.
1 Comment

The crushing womb cancer diagnosis from a family perspective by DH

15/5/2022

1 Comment

 
During lockdown and the uncertainty of the future, we tried our best to meet at distance seperated from loved ones and trying to keep as much normality as possible, My daughter celebrated her 17th birthday on the 23rd June 2020 then on the 24th of June my parents unexpectedly turned up at my house, socially distanced with the devastating news that there was a 95% chance that mam had womb cancer,
There had been some post menopausal bleeding at 74 years of age. I had absolutely no idea what womb cancer was! I thought it was related to cervical and ovarian cancer but no other information. I was on furlough, going through redundancy and spent the next four weeks either crying or researching the statistics on the internet to arm myself with anything to fight.
The oncologist called to discuss and it was confirmed that it was aggressive Stage 1B carcinoma. The cancer rollercoaster had begun, endless waiting, date for hysterectomy was August and mam was put on Provera as the cancer was estrogen sensitive to try and keep the cancer at bay. The hysterectomy went well but rather than just having radiotherapy they also said that she would need chemotherapy.

Mam was devastated she would lose her hair, so we went shopping for wigs and when her hair did start to come out she embraced it like a trooper. 6 weeks followed of chemotherapy carboplatin and paclitaxel combination followed by five weeks of 25 radiotherapy treatments. The histology report came back in January 2021 and the wonderful news that there was no trace. We could breath for a bit but it was always there looming in the back of your mind. Any little twinges would cause concern. So we carried on trying to make the most of the days.
Mams hair started growing back curly with lovely chemo curls and she really liked the style. Then October 2021 mam started to have pains in her stomach, she was diagnosed with some sort of stomach flu, given tablets and also a H Pylori test. After a few weeks of suffering with constant pain and sickness I took her to A&E to find out what was happening. Two days went by fighting for a CT scan to then finally be called into a room to be told that the cancer had returned, just utterly devastated that we had to go through it all again!

The nurses and doctors couldn’t believe she was poorly as she looked so well they said but the mood changed when the scan results had come through. It showed ascites around the pelvic area and some spots which we thought were on the liver but unclear. The walk through the hospital corridor was a long one just utter shock and disbelief. The oncologist visit was soon after and it was confirmed that it was recurrence of the lining of the stomach and could be treated not cured. Bizarrely the H Pylori test also came back positive and mam was admitted to hospital on the evening of her 75th Birthday so that they could treat the pains she was experiencing.
I had just recently started a new job and had to take time away to put the brakes on as it was all too much to comprehend and started suffering with extreme anxiety, we weren’t allowed to visit the hospital because of covid restrictions which was extremely difficult. However during this time of reflection, I researched and searched for ways to try and reverse the cancer; contacting organisations later for clinical trials, finding out how mams estrogen sensitive cancer could be managed. I contacted the oncologist and armed with all this knowledge wouldn’t take no for an answer.
Meanwhile mam was having palliative care, district nurses who were amazing coming to their home every day when she came out of hospital to change the syringe driver. A CT scan was called just before her visit to the oncologist on the 1st April this year, I couldn’t go as I had covid and after another round of chemotherapy, carboplatin was cancelled due to low magnesium levels, along with a blood transfusion and magnesium infusion we were concerned about the results.
But here’s the thing the news was really good, the bubbles of cancer that were showing in the lining of the stomach had almost disappeared, there was a slight spot on the kidneys but couldn’t attribute it to cancer and mam was put on hormone therapy Provera (which we fought for) They are now putting her forward for funding for a new drug.
​
The long term effects of all of this emotionally for mam and the family have been horrendous, the medication has been changed to tablet form to give a better quality of life but the concoction of medication has resulted in agitation and anxiety. You can’t help but feel that you should be delighted with the results but part of you knows that if you let your guard down you may not have the strength to fight on another day.
​But fight on we will and will not leave anyone else suffer the turmoil that is caused by cancer so will continue to raise awareness and shout it from the rooftops
.
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