29: Do Something!

The inspirational Amy Mattingly died this week. I don’t want to write passed away or went to sleep, she didn’t, the cold reality is that she died. At 32.

As I celebrate Oliver’s 5th birthday, Amy’s death weighs on my mind. This is because her last message to us all was to do something. Amy did not want our pity or sympathy, she wanted change. We need change, as on the day Amy died, she was not the only one to loose her life to Bowel Cancer. In England alone she was depressingly 1 of 36 who lost their lives to this cancer.

One of the things that stands out for me about Amy’s story is how problematic her journey to diagnosis was. It took far too long for anyone to take her many, worrying, symptoms seriously. During Bowel Cancer Awareness Month we are all trying to communicate the symptoms to help people get diagnosed earlier. While this is, without doubt, a vital part in getting this disease detected earlier, especially in those under 50, I feel that we also must communicate the importance of making sure GPs don’t just treat the symptoms, they dig deeper to find the cause.

Over the past year I have heard many stories where women with bowel cancer had anaemia. That their doctors gave them iron tablets to fix this, Amy being one of them. Then did nothing else until they got more ill. While anaemia in women is common, and most of the times there is a simple explanation, for example heavy periods, further investigation to make sure it is for something simple, should be done.

When I first went to my gastroenterologist, I went after having my blood tested by my GP. The results came back clear. There was absolutely nothing wrong with them. I was told, very clearly, by the specialist, to come back to see her in 6 months time and earlier if any symptoms worsened. I did not do this, and I can’t even explain to you why I didn’t. Instead I went back to my GP, who looked at the previous bloods, and said all was fine, that I just needed to be patient and that the Giardia effects would get better with time. 6 months after that, and after my sister, to be frank, had a massive go at me for not taking care of my health, not following the medical advice I had been given, and reminding me very clearly it had now been nearly a year since that initial meeting and I was clearly much more ill, I went back (Thanks Vicky). The specialist booked me in for a colonoscopy straight away and bloods where taken. She called me when the results of my bloods came back, saying I was anaemic and it was very important I turned up to the colonoscopy appointment. I did, and that was the day I was diagnosed.

When I told my sister my bloods had said I was anaemic and the specialist had called to make sure I was attending, I could see concern in her face. I was surprised, anaemia is quite normal isn’t it? No she said, you shouldn’t be anaemic, you need that colonoscopy.

So my first attempt of ‘Doing Something’ Is to encourage people to do more than just know the symptoms, I want to make sure you know what to do if you have them.

Make sure your 10mins with the GP is done right. You don’t have long, so go prepared, write down everything even if you think it is not important. For example, I had noticed my poo was skinny (!). I wasn’t going to mention it, as so what? But that was a sign I had a blockage. It was a massively important piece of information that I didn’t mention for a whole year! You don’t know what is important for the medical staff, so mention everything. Then, if you have these symptoms, ask for a blood test. Our blood tells us a lot of information (I didn’t know this). If it comes back ok, but you still feel ill, ask for another one. A lot can change and quickly. If your bloods flag something, a vitamin deficiency or anaemia for example, don’t accept just being treated for those issues, ask to find out WHY you would have theses issues. It may very well be something simple, and that is great. But always ask to find out the cause.

The second thing I want to DO is highlight that while all cancers are caused by genetic changes in certain cells that have mutated, up to 30% of bowel cancers are caused by inherited gene mutations. Around 1 in 20 cases occur in people who have other family members with bowel cancer. There are currently 3 genetic conditions that people could have that lead to a much higher chance of getting bowel cancer, and at a younger age.

  1. Lynch Syndrome
  2. Familial adenomatous polyposis (FAP)
  3. MUTYH Associated Polyposis (MAP)

Amy had Familial adenomatous polyposis (FAP), but sadly she was only diagnosed with this once she had cancer. Too late then for Amy. We need to increase awareness of the genetic conditions that can cause bowel cancer, and the amazing departments we have to help people with theses conditions, like the Polyposis Registry at St Marks Hospital. So that their skills in prevention can help people like Amy. If anyone in your family has a history of bowel cancer, or ‘dodgy guts’, find out from family members as much as you can about what happened to them, and take this detail to your GP and ask to be referred to your local genetics centre.

I hope the above is helpful in someway, and that the post inspires you to want to do something. Amy asked people to give blood. Blood is needed by so many for a multitude of reasons, so the blood bank always needs more. So if you want to do something, this is quick, easy, and amazingly important. https://www.blood.co.uk

If giving blood isn’t your thing, then how about raising some money to do something. How about for the Polyposis Registry?

If you want to read Amy’s journey, here it is in her own words http://www.catslovepeanutbutter.com

If you need any further information about the issues mentioned in today’s blog see the links below

http://www.stmarkshospital.nhs.uk

https://www.polyposisregistry.org.uk

#never2young

#BCAM

https://www.bowelcanceruk.org.uk

https://www.nhs.uk/conditions/iron-deficiency-anaemia/

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