“I’m Sorry But You Have Womb Cancer”

I have been to another meeting this week, held by individuals working together to support people after a cancer diagnosis. There was so much passion in the room as people shared their personal experiences and expertise, and explained how they planned to expand their work. There was a Q+A after the presentation and a Health Professional asked where the money to support the project was coming from as the N.H.S was in severe financial straits.

Personally I am fed up with that being wheeled out time after time, as an excuse not to change things. It has become an easy answer to everything. Debra 1 Actually the facts are that there are some incredible resources for people affected by cancer outside the system. However, despite the financial issues, the N.H.S etc have no desire to even signpost their patients to them. Of course many will actually charge for the service, but isn’t that up to the patient to decide if they want to pay? At least give them all the options!

So many of these services are created by people who see all the gaps when they are experiencing their own treatment, and there are few better examples than the work I am sharing today. Tu to Debra, who very kindly shares her own cancer experiences and what stimulated her to do all the incredible work that her and her colleagues do to promote awareness of Womb Cancer.

“I received the diagnosis in June 2010 at the age of 50. I’d never heard of womb cancer so, puzzled, it took a few seconds before I replied, “Not cervical cancer?” It was definitely womb cancer, otherwise known as uterine or endometrial cancer. Deb 4It turned out to be oestrogen driven and was declared random because I didn’t fit what are considered to be the main risk factors – sixties or older, post-menopausal, inactive and overweight or obese. Since diagnosis it has become clearer that womb cancer can hit women of all ages, shapes and sizes, regardless of diet and activity levels, and that not all cases are oestrogen fed. With womb cancer killing around 2000 women each year in the UK, awareness and early diagnosis are key in helping to reverse the rising numbers of women being affected.

Since 2011 I’ve been supporting other women who’ve either been through, or are going through, their own personal brush with womb cancer. In 2014 I set up online advice and support service Womb Cancer Info  while, most recently, I’ve been closely involved in co-founding UK charity Action on Womb Cancer. Fast forward to 2017 where, at 57, I’m fit and well enough to be pushing through Annie Deadman’s intensive 21 day BLAST training programme. I’m aiming for a six pack rather than an economy pack so wish me luck!

Action on Womb Cancer is the brainchild of Dr Nic Orsi, a Senior Research Fellow and Academic Pathologist at Leeds University. Dr Orsi believed that patients and researchers could collaborate to form a charity, and so it is that our team comprises not only Dr Orsi but Leeds University Post-Doctoral Researcher Dr Michele Cummings and St James Hospital’s Gynae-Oncology Consultant / Surgeon Mr Richard Hutson alongside those of us who have been through womb cancer.

Our charity is a member of Cancer52 a network of charities and non-charities collaborating to give rare and less common cancers a voice. Action on Womb Cancer also collaborates outside of Cancer52, having joined forces with Womb Cancer Info and Womb Cancer (Scotland) to raise awareness, give support to patients and raise funds for womb cancer research. Action on Womb Cancer: Awareness Support Research.

Action on Womb Cancer’s most recent collaboration is with pelvic floor and core health and fitness specialist Sarahjane West-Watson, founder of Fit Fanny Adams. As a physiotherapist and integrative health and fitness professional, Sarahjane is passionate about empowering women to reconnect with, and strengthen, their pelvic floor and core at every life stage, but particularly post hysterectomy; with or without having been through cancer. She gives gratefully received advice and guidance to our Action on Womb Cancer private support group members for whom she produced the following introductory video.

In response to the lack of awareness and support to this incredible yet vulnerable group, Sarahjane is planning a variety of courses for patients and professionals in collaboration with Action on Womb Cancer, plus other experts in this field.

Most importantly and imminently, Sarahjane is running a unique women’s health restoration weekend, dedicated to helping those who have suffered pelvic organ oncology or are affected by other forms of pelvic floor dysfunction or pain. Deb 3The retreat, Soul Strength, which is sponsored by Action on Womb Cancer, is running across the weekend of May 13th and 14th in the Cottons Hotel & Spa, Knutsford.

The philosophy behind the retreat is to combine movement and mindset for women to reconnect and restore core strength through a truly integrative approach. Guest speakers with specialisms in meditation and EFT (Emotional Freedom Technique) will be joining Sarahjane to offer an empowering ‘hands on’ approach. Places are strictly limited, so please either enquire direct at www.soulstrength.co.uk or contact Sarahjane via email at sarahjane@fitfannyadams.com.

In closing, my sincere thanks go to Chris Lewis of Chris’s Cancer Community who believes wholeheartedly – as do I –  that collaboration is the way forward to bring about positive developments in the cancer sector. It has been a pleasure to accept Chris’s invitation to throw a spotlight on Action on Womb Cancer and our partners for our work helping women and all the good things we achieve by working together.”

I want to thank Deb for sharing her work with us, and encourage anyone out there helping people affected by cancer, who feel they are struggling to break through, to get in touch. We need to at least tell people you are there and let them choose. Otherwise you will be lost somewhere in the cancer cartels!!



    • It is a real pleasure to be able to share your story Deb, and thanks so much for writing the piece. We have so many readers interested in stories like yours and it is fantastic what you are now doing with your life, helping so many people by sharing your experience.
      Always happy to share experiences and this site is a platform for that. Thanks so much for all you do in the cancer community. Chris xx

      • Your site is phenomenal, Chris, and a hugely important space for sharing stories, experiences and support. I look forward to reading your Sunday blogs each week, so to be able to contribute was an amazing opportunity for me and one I wouldn’t have missed. Thank you again and best wishes to you and your family for a lovely Easter. Deb xx

        • Thx so much Deb, that is what we are all about. Experience is of no value unless it is shared. Wishing you and yours a fab Easter xxx

  1. A great article,Debra and everyone at action on womb cancer, womb cancer info and womb cancer Scotland, do a fabulous job of raising awareness and helping ladies such as myself, who were hit by a diagnosis of a disease we knew nothing of, the knowledge, support and friendship I’ve gained has been amazing, to now have a dedicated charity for womb cancer is phenomenal. Having opertunities brough to us by people and organisation getting involved with the charity is fantastic.

    • Thanks Jo, these things wouldn’t be possible without all of the wonderful women like you who go out of your way to help make things happen! Deb xx

  2. Hi Jo! I agree totally with everything you have said and that is why it is so important to share experiences and awareness, which seems to be very difficult in this sector at times. Being able to give something back is an amazing feeling, which I’m sure you will know. It is always lovely to hear comments like yours, and thank you so much! Chris

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