Helen Williams

Helen's The Wales Swim page

Fundraising for St Mark's Hospital Foundation
£2,195
raised of £2,500 target
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The Wales Swim, 13 July 2018
Participants: Michael Edwards and Peter Stevens
Raise vital funds for the Polyposis Registry to help prevent Bowel Cancer, and to help fund research and education at St Mark's Hospital, a world-leading specialist bowel disease hospital

Story

Thanks for taking the time to visit my JustGiving page. On Friday 13 July I will be swimming 1.2 miles in the sea off the North Beach in Tenby to raise funds for the Polyposis Registry of St. Mark's Hospital. I will be accompanied by my friend Michael and my brother Peter, both of who have signed-up to join me in the challenge. 

To sum up why I've taken on this swim challenge:

  • Past - in memory of my mum (who would most likely be alive today if she had been under the care of St. Mark's)
  • Present - a celebration of my life (because thanks to St. Mark's I'm alive and kicking and intend to stay that way)
  • Future - for my son's future (who has a 50% chance of having inherited FAP from me and if he does then St. Mark's will also be key in giving him the chance of a normal life span) 

FAP (Familial Adenomatous Polyposis) is a rare hereditary condition normally resulting in a 100% chance of bowel cancer unless having major bowel surgery and a life-long screening programme. The Polyposis Registry of St. Mark's Hospital relies on private funding to maintain a database of families with polyposis conditions - enabling them to support the patients and their relatives through their life journey of whatever their polyposis condition throws at them. 

Over the last 10 years I have had two very major bowel operations and my life has changed dramatically as a result, but I have been determined never to let my health or FAP rule my life; this swim is so important for me to celebrate this – I am a previvor and intend to stay that way!

When I started this challenge, although a strong breaststroke swimmer, I could not even swim 1 short length of front crawl without half drowning, swallowing half the swimming pool and being totally exhausted. I have had to learn how to swim front crawl and also build up my stamina – no mean feat given the surgery I’ve had!

I would be very grateful if you would please support my fund raising for the Polyposis Registry of St. Mark's Hospital by making a donation and also "liking" our Facebook page so you can support us on the rest of our journey. Thank you so much for your amazing and valuable support!

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If you are interested to know my full story, then please read on... 

In 1989 my mum first had bowel cancer, but it was 14 years later when she had recurrent symptoms before she was diagnosed with FAP. In the hope of preventing her from getting cancer again, mum had her large bowel removed ("total colectomy") in 2004.

My brother and I were immediately given bowel cancer screening and after the genetic team had identified the gene which had resulted in mum's FAP they offered us testing for FAP gene. In 2005 my brother was able to take a deep breath of relief when he tested negative, whereas my life changed forever after I tested positive. I remember the horror I felt in my first meeting with the genetic counsellor when, without me knowing much at all about FAP then, she turned to me after she'd given me the results and said "so how do you feel about knowing that you're going to have to have your bowel removed now?" I left in a daze, discharged to the care of a local consultant. 

After my consultant had told me not to worry about surgery until I was in my early 40s (which was when my mum had her first bowel cancer), I decided to get on the internet and really see what I could find out about FAP. Knowing a little bit about the risks I didn't feel safe in his hands and the thought of major surgery was incredibly scary. It was then that I found St. Mark's Hospital. In November 2007 I attended a Polyposis Information Day there and have not looked back since.

After meeting the team there and understanding a lot more about FAP, I was able to get myself referred to Professor Sue Clark. My first bowel surgery (a "total colectomy" to remove all of my large bowel) was carried out early 2008 and from on I have been on a 6 monthly screening programme with them. 

Sadly my mum was not so lucky. Her consultant (many miles away from St. Mark's) didn't understand FAP at all and was unable to interpret that the results of the screening that he'd given her 12 months previously meant that she was at a very high risk of developing duodenal cancer. She died later in 2008, only two weeks after having been diagnosed with duodenal cancer that had spread to her liver. This highlights the important role that St. Mark's plays too in educating health professionals - if mum's consultant had properly understood FAP, and a proper screening programme had been put in place, then it is highly likely that she would be alive today. 

When I have my screening any polyps that grow in the bit that's left down below ("tail") they remove and biopsy. Every couple of years they pop a camera down my throat ("top") and have a look to see what my stomach and duodenum look like. They use the results of both to determine a risk rating which acts as a guide for how they carry out future screening. This is also combined with regular CT scans so that they can monitor other little growths I’ve got. They are so thorough and, whilst I am aware that I carry so much risk of cancer, I am in good hands and trust them to pick up on any significant changes. 

In 2015 Dr. Latchford (who had carried out my screening) told me that he was referring me to another upper GI specialist as he was a little concerned at what he was seeing, especially when he considered a visit to A&E I'd had earlier that year with gall bladder pain and my family history. 

We went away on our family holiday to Tenby, trying to put what he'd said to the back of our minds and forget about it for a couple of weeks. Whilst there we watched The Long Course Weekend Wales Swim from our holiday home and I had an idea that I would like to participate the following year, but then returned to a flurry of speedily-arranged hospital appointments. We will never forget the feeling when we walked out of the consultant's office after he said words to the effect of "I think that you've got duodenal cancer, but I won't know for sure until after you've had Whipple surgery. Duodenal cancer is very aggressive in FAP patients, so we need to get it arranged urgently...It is very major surgery, so you need to plan to be off work for up to 6 months". What a bombshell!

On Sunday 27 September 2015 my life changed forever and I had Whipple surgery, which involved the total removal of my duodenum and gall bladder, the loss of half of my pancreas and a bit of my stomach. The remaining half of my pancreas is now attached to my stomach. I broke every target for recovery: 1 day in intensive care (instead of 2), discharge on day 11 (when it was expected that I’d be in for at least 14 days), returning to work after 4 months (rather than 6 months). 

The following year, on Saturday 9 July 2016, feeling much stronger, I was in the same holiday home in Tenby looking out the window with my friend Michael, when we made a pact to enter the 2018 Long Course Weekend Wales Swim. 

Since then, both Michael and I have been on our own personal journeys working towards the swim challenge this July. Mine’s been hampered by a knee injury resulting in knee surgery in January 2017 (that will teach me to race my son on space hoppers!) and recurrent periods of abdominal pain, but overall I’ve made steady progress and will be ready to take on the challenge – bring on Friday 13 July!



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About the campaign

Raise vital funds for the Polyposis Registry to help prevent Bowel Cancer, and to help fund research and education at St Mark's Hospital, a world-leading specialist bowel disease hospital

About the charity

Our charity supports research, education & innovation at St Mark’s, the UK’s national bowel hospital. The projects we support have driven clinical improvements for patients living with complex bowel diseases, and enhanced disease understanding.

Donation summary

Total raised
£2,194.51
+ £261.25 Gift Aid
Online donations
£2,194.51
Offline donations
£0.00

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