Cancer Research – “Your Say, Your Day, Your CRUK” event

Posted on 06/09/2013 by AnnaGoAnna

Today’s excitement was that I have been invited to attend a Cancer Research UK event in London. 10 other similar events are taking place around the UK simultaneously with the hope that together we (at all 11 events) will provide Cancer Research with valuable input with regard to more patient/carer engagement in research together with policy and campaigning.

In London there were approximately 100 patient/carers in attendance and I was really pleased to note that Cancer Research had been able to get a good balance of men, women, older, younger, working, not working and different stages of cancer diagnosis/treatment/remission. I’m always very aware that often the people who dedicate time to attend these events are often those who are no longer working and often older – we need to get more younger participants so that the views of young adults, new parents etc are also represented. But Cancer Research appear to have done this today!

Having just made that point all girls in this pic!

The day’s agenda is focusing mainly on two main discussions (below) followed by a talk by Professor Bob Brown, Head of Division of Cancer and Chair in Translational Oncology at Imperial College. Then (thanks to technology) a message broadcast to all locations by Harpal Kumar, Chief Executive of Cancer Research UK.

The first discussion – Involving people affected by cancer in research. On our table it was a lively discussion leading to our facilitator writing super fast to take down all the notes. We divided the discussion into three main categories:

What patients could be involved in
Helping to train researchers in how to talk to patients
What motivates people to be involved.

In summary (and believe me this post would be pages long if I put it all down), we said that we believed patients/carers should be involved in everything Cancer Research did. We asked that there should be more of an open dialogue between the organisation and patient/carers. We could help with reviewing documentation, website, information and also media. Don’t assume that patients won’t want to be involved, have an opinion or perhaps enhance the services and products. We advised that patient/carers can provide input at meetings, events and in person but also by email or via online surveys and forums. This additional way would allow people who aren’t able to leave the house to also provide their input. Could the researchers/scientists provide more information to the patient/carers about what they do? Perhaps tours of research facilities. Leaflets and newsletters with updates. We also asked if results could be published… even for projects that didn’t complete or failed. Collaborative working between the researchers and the users… think of it like translational research! If we can take research from the lab bench to the patient bedside then we should consider the same for patient/carer involvement.

We suggested that patients/carers who were advocates or past clinical trial patients could train utilise their experiences to train others. Nurses and doctors could understand the patient journey with regard to clinical trials. What they had been worried about. What could have been explained differently or in more/or less detail. What their experience was and why it was important to them to participate. We felt that these people could also be part of a video/tv campaign to educate the public about clinical trials. Not just the ones that include taking medicines or drugs but also those that mean tissue samples being sent from operations or perhaps completing surveys or research about side effects etc. So many people, until they need to understand, don’t come into contact with clinical trials and therefore many just remember the ‘elephant man’ trial a few years ago and assume this risk for all. Utilising the patient/carer message could dispel this myth and many more and encourage people to always consider a trial as part of their medical journey (if available).

Patient/carers input needs to be valued. After all, all these people were also someone before they were diagnosed or cared for someone who was. Maybe worth remembering that in one chemo ward an organisation may have all the skills they need for the whole project AND now they all have first hand experience too!

What motivates people to get involved? In the most part the answer is usually because they have been affected by cancer. However it can’t always be assumed that this is the case as often it may be more altruistic.

Everyone needs to be realistic and understand the requirements on the participants. Perhaps they have time but don’t have energy. Perhaps they have a great deal of time at the moment but know they have treatment coming up. Perhaps they want short term assignments or to help remotely. Ask. Ask the participant and also build rapport so that they don’t feel overwhelmed or ‘put upon’. We discussed that usually you get a better response and longer involvement.

The second part of our day regarded ‘Involving people affected by cancer in policy and campaigning’.

Something that was raised in the earlier part of the day was that patients and carers should be involved in deciding WHAT is to be campaigned for and what policies were prioritised. We felt it was a little patronising to be told what we should be campaigning for without knowing that there was sufficient patient/carer input at the start of the discussion. After all if it was something we were passionate about, would we not then put more emphasis on getting the message heard?

We asked for training, support and feedback for all participating. For many public speaking is part of their career however for some talking about something so personal can be difficult. Perhaps as part of the training use other patient/carers who have previously spoken publicly to talk about their experiences, how they overcame their nerves, what they felt got the point over etc.

We also felt that it was important for Cancer Research to publicise more the work they do with regard to influencing policy and campaigning.

This posting is only part of what was discussed and Cancer Research have also put together a blog with some more of the points raised. Do post any feedback or comments on their page.

In London, we were also treated to a performance by the Combination Dance Company – Code. Code are preparing a performance project that will be seen throughout the UK which will, through dance, words and music, tell a story about cancer and particularly research. Do keep an eye out for Code where you are. In the meantime you can follow their progress on Facebook and Twitter.

Research interviews

Posted on 05/09/2013 by AnnaGoAnna

I was invited to undertake some research for a pharmaceutical company. I’m not sure which one but was delighted to be asked, particularly as all the participants they asked are all cancer patients who have been diagnosed within the past 4 years and consider themselves currently in remission. I fit all categories and was interested to hear the questions to understand what they wanted to know.

An hour of questions. Predominently about the level of information, support and services available to me before, during and after my diagnosis. Where did I seek information? What sort of information did I find? What would I have liked etc?

Importantly the interview went on to ask about what I would have liked to have found. Where I would have liked to have found it. What would improve the information.

I was able to speak not only from my personal experience but also using anecdotes that I’ve gleaned from all the people I’ve met online and in person. I hope I was able to represent a number of people (and their carers and families) with the input I gave.

Overall I was pleased that a pharmaceutical company was looking for patient/carer engagement. Our views. Our opinions. Our experiences etc. Let’s hope the information provided and gleaned from my answers and other attendees will guide the pharmaceutical company to improve their services or indeed change the method of their delivery.

Rare Cancer Foundation Patient Day

Posted on 03/06/2013 by AnnaGoAnna

I was invited today to attend a ‘Patient Empowerment Day‘ hosted by the Rarer Cancer Foundation (“RCF”).

As you know, Phyllodes is considered a rarer cancer as the incidence has historically been incredibly low. Why ‘Rarer’? Well there is a school of thought that says that rare cancers at the ones that a lot of people know about but don’t feature in the top 5. RareR cancers are those that constantly need education for people to know about! However it’s worth noting that there are a tremendous amount of rare and rarer cancers that barely make it into the press and therefore often miss out of funding and research as they’re deemed to be too quiet!

My invitation to this conference was firstly because of being diagnosed with a rarer cancer (and a member of the RCF) but also for the work that I do as ‘Living Beyond Diagnosis’ advocating for better care and survivorship issues for all cancer patients and their carers.

The Day was opened with an introduction by Andrew Wilson, CEO of Rarer Cancer Foundation. Andrew is passionate about improving the standard of care for rarer cancers.

Professor Martin Gore, Medical Director at the Royal Marsden talked about how to work with your clinician and explained more about the role of the MDT (MultiDisciplinary Team) in patient care. He felt it was imperative that patients in the UK were aware and understood that each patient was to be discussed at an MDT. What they do at their meetings? What it means for the patient? I certainly had no idea what an MDT was until I was thrown into ‘cancerland’! Macmillan Cancer have a good explanation here. It is essential that all parties involved are represented at an MDT when discussing each case. Of course there are time and logistic considerations however should one party not be there, it may be that the patient’s case is perhaps not as holistic as it could be. All MDT meetings are minuted and again it’s important that patients are aware of this as it can be referred to at any time by any member of the medical team to ensure the procedures and rules are adhered to as well as being reconvened should the patient’s situation change.

He spoke of the importance of patients knowing their rights within the NHS. He highlighted that the NHS is OUR service and in order to be part of our care we should not be afraid to ask questions, make choices, take part in clinical trials and, with advice, own our care.

He spoke about the importance of clinical trials and how most private patients in the UK do not get access to clinical trials.

He explained a little more about the New Cancer Drug Fund (NCDF) and the changes that mean that there are more drugs now routinely available. It is crucial that we start to see more trials and subsequently more drugs available to the rare and rarer cancers.

Our next speaker was Rachel Rowson, Media and Communications Professional. Rachel is a policy advisor to the RCF and was recently involved in the development of the RCF’s report There when you need it the most? The Cancer Drugs Fund: 2011-12 annual report.

Rachel spoke at length about the need for patient advocacy. She said how important it was that rare and rarer cancers should have a voice in the media. She used breast cancer as the perfect example of how the voice of patients is often at the fore of media subjects. Rachel encouraged us all to get involved and also to ask others to contact them if they would be interested in doing so. The question of support for the patient/carer was raised during the Q&A session and I was pleased to hear that training and support is provided.

Would you be prepared to take part in pro-actively campaigning, perhaps doing radio, newspaper or TV interviews about your experience? Also RCF are putting together a patient panel.

If you are interested in becoming involved in this worthwhile task, please email info@rarercancers.org.uk with the following information:

Name
Email address
Year of Birth
Cancer Type

Rachel also launched their new publication “The Informed Patients Toolkit” – a truly valuable booklet for people entering cancerland for the first time or unsure of the structure and where to go.

Lynda Pyle, Senior Research Nurse at the Royal Marsden then spoke about the role of the Clinical Nurse Specialist (“CNS”). We know from the results of the past Cancer Patient Experience Survey that there is a direct correlation between better patient outcome and have a CNS. (I don’t understand why when we know this that this role is being marginalised by less recruitment and overloading with other tasks on the remaining staff!!).

Lynda in her role as Senior Research Nurse spoke about the importance of clinical trials and recruitment for them. She also explained that we needed to try to remove the myth and worry about clinical trials from people’s minds. A good Research Nurse will, of course, discuss everything with you, answer all questions and be available to you should you have more questions.

Maggie Wilcox – Independent Cancer Patients Voice and Helen Bulbeck – Brainstrust

Both Maggie and then Helen spoke of how their roles have been developed from their own experiences. They spoke about the importance of patient advocacy. About the need for a cancer community of people affected by cancer who can share their experiences (both cancer and career) to make changes and influence the way cancer services are developed in the UK. Both organisations are great examples and if you’re considering doing more as a patient or carer advocate then these would be an ideal place to find out about opportunities.

After each presentation there was a session of Q&As followed by a short exercise wherein we were asked on each table to talk about our own experiences (or those of others we know well). In all cases very lively discussions and a great deal of notes for the RCF to go through after the Day.

Brain Tumour Trust Dinner

Posted on 21/05/2013 by AnnaGoAnna

Fundraising doesn’t have to be a huge great event or even a test of your physical powers. Tonight I was invited to attend a dinner in aid of the Brain Tumour Trust Charity. The friends arranging it had spoken to the proprietors of a local cafe/restaurant. It was suggested that a set dinner could be served for up to 30 people at a cost of £20. Tickets for the dinner would be sold at £35 ie £15 from each ticket sold going to charity. There would also be a small raffle with a dozen donated prizes and tickets to be sold at a cost of £10 each.

About 25 people, mostly friends and family, turned up for a fabulous evening meal out. (25x£15). We all bought at least one raffle ticket and some many more (25+ x£10). My friends did a short speech about the charity, why the charity was so important to them and why they were organising this event and raising funds.

The dinner was a great laugh, good times with friends (new and old), good food, great wine and all in aid of a good cause.

Not an outrageously costly event to attend but a nice little sum of fundraising for a charity close to my friend’s heart.

Could you organise something like this for a cause close to your heart?

International Clinical Trials Day

Posted on 20/05/2013 by AnnaGoAnna

Each year, International Clinical Trials Day is celebrated around the world on or near the 20th May to commemorate the day that James Lind started his famous trial.

Tonight I’ve been a guest of Cancer Research UK at their Imperial Cancer Research UK Centre in West London. The purpose of tonight’s celebration is to launch a series of short films which feature key research programmes currently being undertaken. These films will be displayed in public areas within partner hospitals and for use by the teams on websites and during public and patient involvement events.

As you know I’m passionate about the improvement and advancement of cancer care. I have spent time to try to understand what clinical trials really involve. What is being undertaken and where. Why people should get involved (greater good and personal good). I can’t stress enough that without patient and carer involvement, medical advancements will be slow or in some cases not exist at all!

Clinical trials used to fill me with fear. I thought, as I think many do, that being involved in a clinical trial would mean being injected with drugs, high levels of danger and perhaps ending up like the Elephant Man case or worse.

What my investigations and questions have led me is truly a very different understanding. There is so much more to clinical trials and a great deal of it non-invasive. Participation can be as little as completing surveys or questionnaires during your treatment or whilst caring for someone else. It may be changing your diet slightly. It may be helping with the wording on a funding application from a patient/carer perspective. It might be the occasional blood sample. It may be speaking to researchers about your experience first hand. It may be donating part of a excised tumour. It may be regular scans. It may also be changes to your chemotherapy regimen, radiotherapy frequency or taking new drugs.

However with all patient/carer involvement there is a huge duty of care to ensure you understand your involvement, the level of involvement. Continued support and, if you’re participating in drugs trials, constant access to the clinical and research team.

They can’t do their work without us!

Personally, I’ve authorised for tumour samples from my excised Phyllodes to a tissue bank for a clinical trial relating to Phyllodes. Sadly due to the small number diagnosed the trial remains on hold whilst new samples are slowly collected.

I’ve also authorised for tumour samples from my excised DCIS to be used in a trial. This trial is known as the ICICLE trial and there is a brief explanation from Cancer Research about what it is researching.

As part of the Patient Participation Group at Imperial, I’ve also helped out with the wording of funding applications, trial designs and patient/carer leaflets. I’ve participated in discussions and provided feedback at meetings to researchers and clinicians. I’ve also been fortunate enough to have a tour of the research centre and see exactly where the work is carried out, the scans performed, the ward for inpatients and consultation rooms. Amazing facility. Incredible work.

So I guess it’ll come as no surprise to anyone that I’ve been involved in another project at Imperial. The only surprise is that I’ve put myself in front of a camera – I so hate myself on film! But needs must.

As I mentioned earlier, tonight saw the launch of a number of films. Well yours truly appears in a couple of them! Even more so, I was presented with a lovely gift from the team at Imperial to thank me for my involvement and all that I contribute to the group.

I hope the films make a difference and encourage people to get involved in clinical trials… remember they’re not scary!

Here are a few films that explain what taking part in a clinical trial involves and below there are more specific trial information films.….

Link to films – I may well appear in them so don’t be scared!

I did it!!

Posted on 03/11/2012 by AnnaGoAnna

Wow. Wow. OMG Wow! I did it!

This morning I was a touch apprehensive. Why the blinkety blink was I getting up early, heading out into the cold with the intention of launching myself over the edge of a wall 100ft from the ground?

I think perhaps I was more worried than I thought… I managed to get off the train at Clapham Junction, a stop too early! I could see Battersea Power Station from the platform as I waited for the next train… today instead of looking majestic, the towers looked exceptionally tall and imposing.

Although there’s a little bit of a November chill in the air, the light is beautiful and the sky an azure blue. If we were dressed in T-shirts and shorts you might actually believe it was summer!

My lovely Godmother was there and was able to keep my mind off what I was about to do whilst I registered, swapped trainers for ‘sensible boots’, reflective jacket, hard hat and got strapped into a harness.

A group of 8 anxious abseilers followed a Stroke Association volunteer into the Power Station. From the outside of the building, although we know it’s crumbling, I sort of believed there was still a belly to the building but what we saw was a void, fallen pieces of masonry, trenches of mud and debris. And a lot of light… there’s not much by way of a roof or top to it. One of my fellow abseilers bought her camera with her and I’m hoping to be emailed pictures of the inside of the building, so will update this when/if I receive them. I’ve said before how I love this building and I truly truly hope that the new owners will be able to restore some of the building whilst finding and developing a new use and love for the site.

After quite a climb up the stairwell we reached the top. We were ushered along and asked to walk close to interior wall (which apparently was safe to walk on!). After a few minutes four of us stepped up to the scaffolding stations. Final checks of our safety equipment were made. I was asked my name (can’t remember what I said). Introduced to the lovely man from the Mile End Climbing Wall who kindly said to keep looking into his eyes! Every time I sneaked a look down (big mistake) he would remind me “Look into my eyes, look into my eyes”…

My carabiners were clipped on to some very thin looking ropes… one that was mine to pass through my hands in order to lower myself ‘gracefully’ to the ground. The second was secured to my lovely Mile End man. After reassuring me that I’d be OK, he told me to step back!

I think it was at that point that my fear really kicked in. Both feet were precariously balanced on the edge. A wide stance but I was firmly staying on the top of the Power Station… I remember saying “I can’t do this”… I remember repeating it again.

Then in a split second decision I remembered why I was doing it. I wasn’t doing it for me. Well OK may be a little bit – after all I hate heights. I was thinking of all the amazingly generous people who have sponsored me. Supported me. Encouraged me. Laughed at me. I was thinking about all of you who have facebooked, messaged, texted, tweeted and called me to support me today and since I signed up for this stupidity! I was also thinking about the incredible sum of over £600 that has been donated by you all. I was thinking about how that money will be spent and the people who will benefit.

And I went over the edge….

Then it was fun. It didn’t occur to me then that I was only attached by a thin rope nor that the ground was quite a distance below. I loved it.

I did a few Tigger bounces (much to the admiration of “Look into my eyes” at the top, who shouted down to congratulate me on my technique!

Cleverly I had thought that apart from having a rather larger backside than many of the abseilers, it might be difficult to spot who was who on the descent and tied a fluorescent orange scarf around my hair! No excuse for not spotting me now…

And the ‘official’ picture… forget me in the foreground… check out how far down the ambulance is!!!

Hey all I did was get up early (struggle), head out into the cold (struggle), look into a man’s eyes (weird), step off the top of a wall (crazy), bounce on the end of a rope (no comment) and then remember to breathe when my feet were back on terra firma.

What you all did was support me, encourage me, donate your hard earned cash, the kids raided piggy banks and more importantly you believed that I could do it and that the cause I was doing it for was worth digging deep.

Thank you from The Stroke Association

Thank you from all the people affected by a stroke that your money will help.

And

THANK YOU from me. xxx

Small c Coffee & Cocktails

Posted on 29/10/2012 by AnnaGoAnna

I figured it was about time I wrote about Shine London and Small c Coffee & Cocktails and why I’ve been attending.

A while ago I was contacted about a new charity ‘Shine Cancer Support‘ – A Network for Younger Adults Affected by Cancer. The organisation was created by people who found themselves diagnosed with a cancer in their 20s, 30s and 40s and in many cases with little information or support for their age group. Or diagnosed with a ‘rare’ cancer, there isn’t a specific support group to attend and certainly not for your age group. Issues such as fertility, dating, childcare or returning to work are critical to a young adult but often overlooked with cancers predominantly diagnosed in the older person. In addition, many support groups take place during the day and this timing in itself lends itself to attendees being older or no longer working.

Many people will tell of how peer support has been incredibly valuable in their ‘journey’ and that a shared experience or a tip or trick can be crucially important at a vulnerable time.

Shine offer a number of activities in Bournemouth, Dorset. They have had walks on the beach, balls, drinks evenings and new members lunches. They have arranged pamper days and Christmas and Halloween parties.

A summer holiday took place this year and it is hoped to be an annual event. Camping in Swanage with members and their families. This weekend away allowed family members to also network with others and share their own experiences.

In London, there are regular Coffee & Cocktail evenings. The venue is changed regularly and meet up every 6-8 weeks. It’s a good mixed group of men and women, age range is literally 20-40(ish!), different and varied diagnoses, some still in treatment, some between treatments and some counting the years of survivorship.

What I love about it is that we’re in a pub, bar or private club. We drink wine, beer, juice, coffee or bubbles! We chat as a group but also as small groups. We talk about living. We talk about dying. We talk about cancer. We talk about where we’ve recently eaten or holidayed. We talk about aspirations. We share experiences. We talk about inspirations. We talk about each other. We talk about our families and friends. For the most part we talk about all the ‘normal’ stuff that you talk about with your friends in the pub… and probably talk more and faster as the wine/beer is consumed.

What we don’t do is sit around in a circle going over our medical history, latest operation or graphic side affects. But if they’re mentioned, it’s OK too.

Tonight’s meeting was made all the more amusing when early on we were joined by a gentleman who was probably in his 40s and clearly had had too much of something… perhaps booze but I suspect it may have been combined with other substances! He bounced over to our table informing us that he was meant to be at a wedding reception. The bride shouldn’t be marrying that &^%(*. Then he described their whole relationship. A while was spent on his asking if what he was wearing was suitable or should he have his scarf on or off, should the jacket be on or off – each ‘idea’ being modelled by his strutting across the bar and back to our tables. We then heard all about his life. His wife (or ex-wife). His lover. And so much more. It was hysterical and I have to say that as a group we were all crying with laughter and fuelling his drunken rants! After quite some time we managed to persuade him to head off to the wedding reception… I would so love to have been a fly on the wall when he turned up!

We were joined by two new group members. Twin men in their 20s. One with cancer, the other supporting his twin brother. They were fun and we had a laugh. We also heard his/their story. They also shared moments together when something was said and the other realised that they’d not heard it before. I believe the group environment allowed them to talk about issues that they’d previously skirted around too. But mostly, I hope, they felt supported. I do hope they’ll be back to the next evening.

There are many support groups. There are many different support environments. One is not necessarily the right one for all. I’m excited by Shine and what it has the ability to do – support people diagnosed with cancer in their 20s, 30s and 40s. I’m also very pleased to count these new people in my group of friends. Just sometimes I need people who understand… and sometimes I just need people to have a glass of bubbles with!

French 75 cocktail… combining two faves… gin and champagne!

World Stroke Day, 29 October 2012 + my crazy abseil!

Posted on 29/10/2012 by AnnaGoAnna

Did you know that today is World Stroke Day?

Several months ago a friend forwarded an email from The Stroke Association. They were looking for volunteers to abseil down Battersea Power Station and raise some valuable funds for their organisation. It piqued my interest for quite a number of reasons. Moments later I had replied and signed up for the event.

Firstly, I’m not a fan of heights. In fact, I get queasy going up in some lifts and can’t go to the edge of buildings with floor to ceiling glass. However those of you who know me well, will also know that I’ll reframe this fear and create it into a challenge. Scared of the sea, I learnt to scuba dive. Fearful of being out of control, I did a skydive. Logically, I can do this too – eeek!

Secondly, Battersea Power Station is an iconic building that has been part of my landscape for many years. Since first moving to London 26 years ago, the silhouette has been a part of train or road journeys from North to South of the Thames. Before much of the new London developments built over the last 26 years, it was always there unused and unloved but proud of his history and heritage.

The building was once a power station and decommissioned in 1983. The building was Grade II protected against demolition and has been searching for a new owner and purpose ever since. Wikipedia’s entry.

I understand the power station has been sold and that the new owners are working and reworking planning applications to redevelop the land. I’m not sure what it will become or when the work will start. There are many stories written of it crumbling. I’ve no doubt however that the view that I’ve loved will change but am hoping that this ‘Cathedral of Industry’ will still retain much of it’s original character and beauty.

Thirdly, The Stroke Association is an organisation close to my heart (pun intended!). They do incredible work supporting people and their family who have been affected by stroke. They believe strongly in survivorship and ‘Life after Stroke’.

Many people think that a stroke only happens to older generations or perhaps those with an unfit lifestyle or that they aren’t as bad as many other illnesses or diseases. Sadly in many cases this isn’t true. A few facts below:

• An estimated 150,000 people have a stroke in the UK each year
• Stroke accounts for around 53,000 deaths each year in the UK
• 10,000 people under the age of 30 will have a stroke each year
• Stroke is the third most common cause of death in England and Wales, after heart disease and cancer
• Stroke accounts for 9 per cent of all deaths in men and 13 per cent of deaths in women in the UK
• Stroke has a greater disability impact than any other chronic disease. Over 300,000 people are living with moderate to severe disabilities as a result of stroke
• Three times more women die from stroke than breast cancer

A few of the reasons why I feel passionate about raising some funds for the Stroke Association and why I’m abseiling this coming Saturday.

My friend’s father, a fit and active retiree, who passed away suddenly.

Rob who had a stroke earlier this year which led to the discovery of bowel cancer.

And two little munchkins who are both very close to my heart. Both were born with different diagnoses but devastatingly both sets of parents were warned that they will probably be affected by strokes throughout their lives. Sadly for one child the strokes have recently started. She doesn’t understand them nor understand what they are or why they’re happening. So far they’ve not been bad strokes.

This Saturday is the date of my abseil. You can only imagine how my palms go sweaty at the very thought of launching myself over the edge. Genuinely I feel sick. Genuinely I’ve questioned why I’m doing such a crazy thing when I hate heights. Genuinely I’ve thought of backing out. Then I remember the faces of those I’m doing this for.

I set myself a target fundraising figure of £425.00 and I’m chuffed to say that I’ve exceeded that. BUT I also know that any pounds and pennies that can be raised over and above my own fundraising figure are needed. I’m also keen that you know exactly how the Stroke Association use donated funds.

For every £1 donated:
79p goes to directly to supporting their work to fight stroke.
20p is invested to generate future revenue.
AND only 1p goes toward running the charity.

Find out more about the Stroke Association here or donate directly to the charity.

AND if you want to sponsor me and my insanity on Saturday 3 November 2012 please donate via my justgiving page at https://www.justgiving.com/annagoanna

PS Any donations over £500 and we’ll use my bottom as an advertising hoarding – well let’s face it that’ll be in most of the pictures and it’s large enough!

London 2012 Olympics – The closing

Posted on 12/08/2012 by AnnaGoAnna

It is a terrifically poignant moment when the Olympic torch is extinguished. Sometimes it’s hard to imagine that the Olympics was only a couple of weeks of our lives. Yet it does and indeed should inspire a new generation and leave a legacy. Millions of memories made for the attendees, the Olympians, the volunteers, those who watched it on the big screens, on their televisions, in Great Britain and overseas.

What will you take with you from these past few weeks?

I’ve loved the enthusiasm of everyone involved:-

The volunteers who have, at every opportunity, offered a smile, a song, a dance or the most practical of support.

The armed forces who have kept us safe at every venue… and always with such welcoming and warm smiles and laughter.

The volunteers who gave up their time to perform in the opening and closing ceremonies. Their many many hours and trips to and from Stratford for rehearsals over many weeks.

I’ve loved listening to people talking about the Olympics, the flags, the colour, the spectacle. A little girl yesterday, sat behind me at the railway station, turned to her big brother and exclaimed “look the flags are dancing” (as they caught the breeze). As I looked up, they did dance too.

I’ve always been someone who talks to strangers (yes I know I should have paid more attention to my parents when I was younger!). But I’ve loved that they don’t think I’m a mad bird on public transport but they engage in conversation. I love that people are excited about the Olympics and that people who are nearby join in the conversation rather than bury their heads in their book or look the other way!

I love that it doesn’t matter what colour skin, age or ethnic group they’re from, we all chat together.

I loved the Irish chap who was sat next to us at basketball saying that he looked forward to meeting us again during his time in London – perhaps an assumption that London is small enough to bump into him again but certainly one that had made him feel as if it was small and comfortable!

I’ve loved that friends visit from overseas (from New York, Sydney and San Francisco) and I get to share the Olympic dreams with them.

I’ve loved that Mum played her part in the opening ceremony with her picture being on the memorial wall and in the closing ceremony as they played ‘Look on the bright side of life’ which was a song she was adamant should be played (and was) at her funeral.

I’ve loved being able to take my niece and nephew to Olympic events and creating memories with them that I hope will give them confidence and inspiration as well as in years to come they will tell their families and remember being there.

I’ve loved that my brother came up to London and to an event with us yesterday and I got to hang out with him for the day and together create a memory or two.

I’ve loved the laughter that has been a part of the opening ceremony (Bond 007 and the Queen), the closing ceremony, the volunteer drummers, the TV show Twenty Twelve and of course Team GB‘s and Tom Daley’s diving squad‘s YouTube efforts too! It’s great to know that we can still retain our sense of humour (even if a little wacky and odd at times) AND get on the medal table!

I’ve loved discovering and rediscovering parts of London that I’ve not seen or visited in a while. Parts of London that are looking at their best. A London that is welcoming, warm and friendly…. and mostly covered in bunting!

I’ve loved listening to people talk animatedly about the Olympics without swearing and bad language!

I’ve loved watching the Olympians at venues, on the TV and also listening to them in the background. I’ve loved sharing their ooooohs and aaaaghs as they do or don’t achieve their gold medals. I’ve held my breath and cheered them on. I’ve cried with joy and cried with disappointment.

But most of all I’ve been proud to be British. I’ve been proud that London has shown the world that despite the doubters, we really can show the world a beautiful city, an inspirational nation, a winning mentality and a confident future.

Thank you for allowing me to be a part of it.

Volunteering

Posted on 26/07/2012 by AnnaGoAnna

I attended a meeting at the Maggie’s Cancer Caring Centre in London this evening for volunteers. As you know from previous postings I have been a volunteer at a number of events for Maggie’s in this past year. Some of them are collecting donations, such as the Walk the 38 or Golf Live events. Others simply representing the charity and being part of the Olympic Stadium parade.

Charitable organisations always need volunteers. People who understand their organisation, what they do and why. To speak with members of the public, promote their services and advocate their work.

For me, volunteering for Maggie’s is a no-brainer. I can’t endorse more fully what they do, what they stand for, their methodologies, ethos and care for anyone affected by cancer. For their adaptable spirit that enables people at different times with different requirements to be supported by this organisation.

I have known and know people supported through their Glasgow, Edinburgh, London, Oxford, Hong Kong and Cheltenham centres. I’ve yet to hear a bad word said or a comment about their not being there or knowing what is required and when. Truly amazing and I would urge you all to have a look at what they do, tell others about them and if you’re nearby to call in and understand each of the Centres.

Tonight several volunteers and Maggie’s staff got together to brainstorm about ideas for future fundraising events and volunteer roles. We recognised that the volunteer roles take many forms. Some physical attendance such as the events I’ve done previously. Others to review leaflets or newsletters etc. Perhaps to contribute by sharing your experiences. Also volunteering services to talk about the Centres and the services. Promote their organisation. As I’ve said before, I do this all the time and will continue to do so.

If you can, do get involved or take the time to find out more about the centres and why I think they play an important part around the World in supporting people affected by cancer.

But volunteering doesn’t have to be for Maggie’s… I’m sure you’ve got organisations, charities or causes you’re passionate about. Do think about getting involved… they all need volunteers.

Of if you’re not sure who’d you’d like to volunteer for but perhaps have some time on your hands, want to get involved or even need work experience, then one of the volunteers said this site, Do-It Volunteering Made Easy, is a great place to find organisations needing volunteers – at home and abroad.

The buzz I feel when I volunteer for Maggie’s and the other charities and organisations with whom I work/volunteer/speak, is enormous. I know I give up lots of my time (some people say too much of my time) but what I get back is way way way more!