Make time for tea!

On Tuesday 28th February, I was very privileged to attend the Eve Appeal’s launch of their March 2017 campaign: ‘Make Time for Tea.’ It was held at the House of Commons and I went along with my dad for a very special afternoon tea.

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From the moment I walked into the room, I got a sense of how important this event was going to be. The room was filled with: ovarian cancer survivors, patients who are still undergoing treatment for ovarian cancer, families who have lost loved ones to the terrible disease, and MPs and celebrities who are in support the Eve Appeal and their efforts to raise awareness of, not just ovarian cancer, but all gynaecological cancers. The focus for this event was ovarian cancer because March is ovarian cancer awareness month.

Athena Laminios, Chief Executive of the Eve Appeal,was one of the first people to speak. Her talk focused on the importance of us all talking more about gynaecological cancers to raise awareness. We as women can often end up avoiding conversations about our bodies, and especially our vaginas, because we end up feeling embarrassed about it. Athena highlighted how we must all try to not shy away from talking about these issues just because it can sometimes feel uncomfortable. It highlighted for me just how important it is to allow these conversations to happen, not just between us, but also in our wider society.

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We were also honoured to hear from some inspiring women about their personal experiences of ovarian cancer. Alison, who is an incredibly special woman and a huge inspiration to me, spoke about raising awareness of BRCA mutations and ovarian cancer. She has been, and continues to be, there for me since my diagnosis, and was one of the first people I spoke to when I was diagnosed. She immediately understood what I was feeling without me even having to say much. It was humbling to hear her talk about her personal cancer journey and determination to raise awareness about this important topic. I am so thankful to have such support, guidance and love from Alison and her family.

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I spoke with other women like Alison who have lived with ovarian cancer. One woman I met told me how for many years, she lived in fear of cancer, but now over time, feels free from this fear. It was so reassuring to hear from her; like all of the women I have met, hearing about her experience gave me hope and encouragement.

I also met a number of celebrity supporters of the charity, including Dr Christian Spencer Jessen and Lesley Joseph, as well as a number of MPs. It felt so special to talk with these people about my personal journey as well as the wider issues relevant to ovarian cancer.

I wanted to write a bit more about what Athena mentioned in her talk; the importance of us talking about our bodies and gynaecological symptoms. I identified so much with this when think back to my own experience. Back in May 2016, I got terrible tummy cramps, which seemed strange to me because I had already had my period that month. I remember noticing other new symptoms after this and initially, the only reason I kept asking my GP about whether it was to do with my ovaries was because of where the pain was, not because I suspected it was cancer. Back then, I had no idea about the symptoms of ovarian cancer. However, as the symptoms and pain continued, and I started to search the internet, I began feeling more uneasy about what the health professionals were telling me and so I kept going back. This is one of the reasons I decided to start blogging; I truly believe that knowing the symptoms means that you can be more aware of when things don’t feel right in your body. If I have learnt anything from my experience of diagnosis, it is that you know your body the best. I also feel strongly about raising awareness of ovarian cancer amongst women of all ages. I stress ‘all ages’ because although rare, ovarian cancer can still occur in younger women, like it did with me.

So the take home message for me from the event was for us all to try and be more comfortable with talking about our bodies, our vaginas and gynaecological symptoms. If we can try to have these conversations more openly, then we can continue to make it normal for women too talk about when things don’t feel quite right and subsequently get things checked. One of the most terrifying facts about ovarian cancer is that it is often diagnosed in its latter stages, and usually once the disease has spread. The symptoms are often the same as conditions such as irritable bowel syndrome or pre-menstrual syndrome. You can read more about this on the Eve Appeal website.

In aid of ovarian cancer awareness month, the Eve Appeal is asking everyone, women and men, to sit down for tea and start having these vital conversations about ovarian cancer, whilst also raising money for the cause. Have a look at the link below for more information.

So put the kettle on, slice the cake and let’s start talking!

Links and info:

  • Oliver Bonas have teamed up with the Eve Appeal and for the next two years, will be supporting The Eve Appeal through the sale of a number of products. All their profit will go to the charity, including all the in store carrier bag sales. https://www.oliverbonas.com/about-us/charity

Spreading BRCA mutation awareness

img_6204Today I had the privilege of meeting Caitlin Brodnick (@caitybrodnick), who is 31-year-old comedian living in New York. Caitlin carries the BRCA 1 gene mutation and made the life-changing decision to have a preventive double mastectomy. I am currently battling ‘Cyril’ in my ovaries, but my mind is made up that when I am back to full health next year, I too will have a preventive double mastectomy. My current situation makes me feel that my breasts are a ticking time bomb. When I watched Caitlin’s documentary; ‘Screw You Cancer,’ which documents her journey, I felt inspired by her story. Previously, the idea of removing my breasts seemed terrifying. Meeting Caitlin today, and seeing how happy she is with the surgeries, fills me with hope for when it is my turn to go through it. As Caitlin says, ‘they are DIY boobies!’ But these DIY boobies will take all my fears away, and as I discovered today, the constant need for a bra (so every cloud and all that!)

Caitlin spoke of growing up knowing that cancer was prevalent on her father’s side of the family, but it took her a long time to want to take the test. After finding out that she tested positive, it took her a while to comes to terms with it and decide on her next steps. I felt similar to Caitlin. When I heard that I had tested positive, I did not know what to think. I was so anxious about this news, and waiting for breast screening at age 30 did not sit right with me. I immediately went to have my breasts checked and a plan was put in place to have screening every six months. At the same time, I went to my gynecologist to have a pelvic scan and CA125 blood test, which would be once a year. My anxiety about the potential risks of this gene started to get better because I was being checked. However, in the back of my mind, I always wondered about what would show up on the screen. Lumps in my breasts were found, but thank God they were always benign.

Even though going for constant checks is frightening and leaves a nervous feeling in my stomach, I do not regret being tested. In fact, I am thankful that the BRCA 1 gene mutation was discovered in my family, because knowledge is power. It allowed me to make informed decisions about my body. Even though Cyril has hit me at an age that is very rare (most probably due to the gene mutation), I am comforted by the fact that I knew about the gene mutation and was getting myself checked. If you have strong family history of breast and ovarian cancer, I urge you to visit your GP and have the discussion about genetic testing. As I prove, it can hit earlier than the national statistics state in BRCA 1 and 2 positive people. It is a very challenging test to go through, but knowing allows you to make plans for the future and take steps to manage the risks. I had my test at Northwick Park Hospital and the genetic specialists support you through the whole process.img_6202

I also had the privilege of meeting Caroline Presho, who is head of the BRCA Umbrella group. Caroline works tirelessly to raise awareness for BRCA mutations and provides vital support to lots of people. We spoke today about the issue of misdiagnosis; the need to raise awareness amongst GPs and how women of all ages with BRCA gene mutations need to be vigilant of the risks these mutations cause. I look forward to doing more work with Caroline in the future and being part of a group that is bringing BRCA gene mutations to the public’s attention and making people stop and think.

To follow Caity’s story, please click this link to view her documentary.

http://video.glamour.com/series/screw-you-cancer

Please have the conversation with your loved ones about your family history regarding breast and ovarian cancer, and get to the GP to see if you are eligible for the testing. The links below will provide you with further information.

http://www.cancerresearchuk.org/about-cancer/causes-of-cancer/inherited-cancer-genes-and-increased-cancer-risk/genetic-testing-for-cancer-risk

http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

http://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/genetic-testing-and-counselling/genetic-testing.html

#FindingCyril