London Marathon 2011

Posted on 17/04/2011 by AnnaGoAnna

Not sure I’ll ever be fit enough to run the London Marathon but that doesn’t stop me from heading up there to support ~~idiots~~ heros that do!

Today my new friend, Phil Wilson, is running to raise money for Breakthrough Breast Cancer. He’s been training hard and given up the rock and roll lifestyle to put his heart and soul into running the race.
Various ‘team Phil’ were at different spots along the route to cheer him on. I was at mile 25… not far from the end and we were cheering pretty loudly. When Phil made it this far he looked to be in pain but rallied by the support.

He then grabbed a flag from Sarah and ran on, leaving many of us (including me), in tears. Phil was running it for all diagnosed by cancer… a few of us had the honour of being named on the flag. I didn’t know about it beforehand so ‘thank you’ Phil. An honour to share it with so many other amazing people… some of whom I have the pleasure to call my friends.

Phil did amazingly well. He finished the race. He raised a lot of money for Breakthrough Breast Cancer. He also did a great deal of media talking about why he was racing and, of course, his blog and social media. Worth a read… and watch out for his next adventure once his Tiger Feet have recovered…

Cyberknife at Barts, London

Posted on 29/03/2011 by AnnaGoAnna

Very excited to have been invited to St James’ Palace this evening by Barts and the London Charity.

The Charity have pledged to raise funds so that Cyberknife can be installed and offered to patients at Barts Hospital, London. Cyberknife technology is proving a real advancement for patients who require radiotherapy treatment in difficult to reach places or perhaps where a tumour is located near a vital organ. Historically radiotherapy targets an area of tissue but the radiation area is larger than the target area, thereby radiating tissue that isn’t affected by a tumour. Since radiotherapy was developed for its use with cancer patients, the treatment has evolved to become more specifically targeted but also with more knowledge about the strength of radiation needed.

Cyberknife is a much further advance and is hailed as being able to tackle many previously ‘untreatable’ tumours. However the equipment doesn’t come cheap. It also requires a location that is specifically refurbished to ensure no leaks of radiation. All staff require lengthy training of the equipment. Even the installation period and ‘balancing’ time required can be time-consuming. But each stage is incredibly vital to ensuring the technology is used in the best and most effective way, targeting very minute areas of tissue and reaching those previously untreatable areas.

We saw an incredibly impressive video demonstrating the Cyberknife and it’s capabilities. We heard from the charity about the fundraising efforts (including the London Freemason’s invaluable input). Amazingly the £2.5m has been raised and works are underway to complete all the necessary changes, training and balancing of the machine so it can be used as soon as possible.

I’m quite sure there will still be a huge wait for patients to be treated with Cyberknife however the benefits it offers to patients is enormous. Not only do they have more targeted therapy but, as I understand it, often the quantity of radiotherapy appointments is less as the targeting is providing better outcomes.

Barts Health – Cyberknife
YouTube – tour of Cyberknife at Barts
Accuray’s Patient guide to Cyberknife
Freemasons fundraising

YSC Conference in Orlando

Posted on 27/02/2011 by AnnaGoAnna

Very excited to have received a bursary place to attend this year’s Young Survival Coalition conference in Orlando, Florida. I know how much last year’s conference helped me come to terms with my diagnosis. The workshops were well planned. The plenary sessions informative. Most of all was simply the camaraderie between attendees and knowing you’re not alone.

I’m also super excited to be able to meet up with some of my Phyllodes friends. Some were in Atlanta but more that I know online from the support group and particularly, Andi. Andi is someone I’ve mentioned before who was pivotal in my managing my diagnosis. Sadly Jolene is no longer with us ‘physically’ but we have a plan!

I need to remember that attending the conference is for me. Me personally. About me. I know I will be tempted to be looking at it as opportunities for the UK conference for Living Beyond Diagnosis and I’m sure there will be lots of ideas but sometimes I need to put my own health and mental health first.

I’m grateful for the long flight today. I can sleep. I worked through the night before leaving the UK to get everything up to date and ahead of myself so that I could put an ‘out of office’ message on and leave.

Once again Jenny is coming to the conference and will be sharing my room at the Park Plaza. Always great to catch up and particularly at the conference when it’s so easy to share concerns and worries with someone you’ve known for 20 years but who ‘understands’.

Create a Life you Love Challenge

Posted on 04/02/2011 by AnnaGoAnna

Join in the Create a life you love Challenge…. Doing something you love… Something that makes you want to bounce out of bed in the morning… something that makes you smile and feel alive…

All challenge entry fees are being donated to Living Beyond Diagnosis – an organisation hosting events for anyone affected by cancer. The first 3-day event is in November 2011 in London for anyone affected by breast cancer.

National Cancer Information Pathways

Posted on 24/11/2010 by AnnaGoAnna

I was extremely excited to hear about this new initiative – National Cancer Information Pathways. The premise is that there will be an online system that is accessible on the internet and contains information, documents and reference sheets for the entire pathway relating to each cancer. It’s no small job but I know first hand that if I could have accessed a reliable resource that provided me with bitesize pieces of information at different times during my journey, life would have been so much easier. Imagine being able to download information and email it to friends or family that enquire ‘what now’.

The idea is that your Cancer Nurse Specialist spends 10 minutes with each person to find out what what they need to know, set up an account an print out the relevant information that they need at that time. The patient can then go in to their account and look at other additional information when they wish and then to discuss these with the CNS.

How brilliant will this be? So when I was asked if I would consider becoming a Patient Reviewer for this system and National Cancer Action Team (NCAT) (who are coordinating the system), I jumped at the chance.

Today the ‘Patient Reviewers’ met up for an event to understand the nuts and bolts of the system. How it will work. What needs to be done. Understand that each and every document needs to be reviewed by patients to ensure that it is in a format that is easy to understand. Lay people’s language (with medical terms added). Not to much information and not too little. We discussed the quantity of documents that would be needed and attempted to break down a pathway and think of other aspects that we, as patients, may think necessary whereas clinicians may not have thought about it.

The system can be accessed here. (**UPDATE – now here). By entering your cancer type and postcode you will then be presented with the applicable information.

Our jobs as Patient Reviewers is to be on standby (using an online system) to review everything. We will receive an email notification when information needs reviewing to login. Once there, we will comment/change each document (via the system) and upload these for the central administrator to decipher. If the changes are big changes they then need to go back to the author to rewrite/edit. For each document there will be quorum of so many reviewers required so that we can ensure that it has different perspectives review it.

Exciting times and I’m so prepared to get down to work on this.