Hanging out with friends during chemo

Posted on 08/06/2012 by AnnaGoAnna

Today, I joined a friend first diagnosed with ovarian cancer in the hospital whilst she had her chemotherapy. I first met this fabulous lady at a fundraising event 18 months ago when she was in remission from her cancer. Since meeting we have been in touch regularly and together with another dear friend who sadly passed away last year, formed the ‘champagne and shoe girls’.

This merry band of crazies would meet up for a fun and laughter filled day, often with a glass of champagne (despite any drug regimen) and find the most outrageous shoes to try on and buy! Oooh we found some crackers and I have a selection of crazy pairs that although I know I’ll probably never wear, I love just because they were part of a day out with the girls. You see although we know each other ‘because’ of cancer, sometimes we just want to do something silly, something that’ll have us all in stitches of laughter, something that others may look at and question. I find it particularly hard when I overhear someone questioning why we’re giggling away when we must be cancer patients as one of the group is in a headscarf or their hair is just beginning to grow back… but sometimes we also want to have this laughter with people who ‘get it’ and with whom we can casually drop a ‘concerned remark’ into conversation whilst discussing the importance of sequins and colour on a pair of 5inch heeled shoes!

My friend’s cancer has spread and she’s now having chemotherapy to get rid of this little lot. She’s doing brilliantly. Her count continues to go down and we have a couple more sessions to go. My ‘support’ is easy… I get to hang out with my friend and natter the day away, perhaps go out and purchase food treats or a different coffee/tea to that served from the trolley… but mainly it’s just us catching up. The only difference from normal is that we have to wear our own shoes and there’s no champagne! Strangely a day spent like this goes so fast and we’re always left saying ‘oooh you haven’t told me about X or Y’!

Chemo wards aren’t scary you know… they’re just a room filled with fabulous people who are attached to drips for the day. Each of those people are there for a similar reason but each have a different tale to tell and stories to share – I’m not talking of cancer but of life! Before I’d entered a chemo ward, I thought it would be full of people with no hair who were semi-conscious. I thought that it would be a sad place of people ‘fighting’ to survive and being pumped with toxic drugs. I thought it would be a place that people didn’t talk and there would be a silence only punctuated by the glugging sound of fluids being pumped into them. And I don’t mind saying that I was anxious the first time I was invited to spend time with a friend on their ‘chemo day’.

In reality it’s like a coffee shop or bar. Lots of people from all walks of life, all ages, both sexes and, of course, different stages of cancer sharing their time. They ARE sitting there plugged into the drip machines but what you don’t hear or see is sadness. What you see is an eagerness for the chemo to be finished so that they can move on with their lives but what you also see is a camaraderie that’s so inspiring. You hear other people’s conversations and they must hear ours too.. you hear people discussing what they’re going to have for dinner or which film they’re off to see at the movies. Preparation for a birthday party or a trip overseas…in fact the conversations really are akin to the conversation you’d hear in the coffee shop and if you close your eyes, you could so easily be there.

BUT that said, a day in hospital is a long day without friends or company. So if you’ve got a friend having chemo or spending time in hospital for anything, do think about whether you could share an hour of your day with them and instead of that long phone call to finalise plans for a party, pop in and talk to them there. It’s not scary. It’s not frightening. And your friend (and the others in the ward that you have little chats with) will appreciate the company… and I’d put money on it, you’ll have a great time too.

A friend in need

Posted on 28/05/2012 by AnnaGoAnna

Today I woke early and headed out to get the bus into Chelsea. I’d had a somewhat sleepless night anxiously running through all the things I needed to say this morning. As the bus slowly made it’s way down the Kings Road I will still mentally making notes. This time though the notes and things to remember weren’t for my own ‘consultant Q&A session’. I was meeting up with a lady that I’d ‘met online’ a few weeks ago. She posted on a forum a question about Phyllodes and had concerns there was nothing out there nor anyone else diagnosed. Her comment appeared in the many different internet search mechanisms I have set up and we became acquainted. Over the past few weeks we have corresponded by email regularly and I have been able to introduce her to the ‘Phyllodes Support Group’ on Facebook.

Like so many of us diagnosed with Phyllodes, we can’t find information or resources easily accessible. If you go on to many cancer sites or into information centres there is never (or very rarely) any mention of it. Just in that moment, it can feel even more frightening and isolating than ever.

Today was a consultant appointment that I had encouraged. The lady had many questions and her own hospital didn’t seem to know or understand Phyllodes. Therefore a consultation at the Royal Marsden with sarcoma specialists we hoped would help her get answers. The lady had been up tremendously early to make the journey to London and we met (with her adult daughter) in a coffee shop around the corner. Because of delayed trains we only had about 30 minutes. But enough time to walk and talk on our way to the hospital, run through the questions she’d got written down and importantly, I believe, enough time for her to meet me and know that we do survive Phyllodes!

I left them at the hospital as they were called in for the appointment, we hugged and I wished them luck. The lady then handed me a card.

The sun was shining so I decided that, for once, I really did have enough time to walk home and set off along the Fulham Road and to the river pathway. Just past Battersea I found a bench sheltered from the now very hot sunshine and stopped for a minute. My phone blipped with a text from the lady letting me know they’d just left the hospital and would email fully later. I, of course, (and you’d expect nothing less) suggested that she and her daughter enjoy the sunshine somewhere fabulous for lunch with a glass of bubbles… !!!

I then opened the card. The front was a picture of a baby elephant. Inside the words:

“They say that ‘Elephants never forget’… well neither will I Anna! I will never forget all the support you have given me this last month – giving me links and pointing me in the right direction.

It’s official…. “You are a Star AnnaGoAnna!”

There might have been a tear that snuck out and rolled down my cheek… or it could have just been the sun getting in my eyes!

I walked home wondering what it would have been like had there been a ‘Me’ around when I was diagnosed.

Imerman Angels

Posted on 16/05/2012 by AnnaGoAnna

In March of 2010 I registered with an organisation, Imerman Angels, as a Mentor Angel. I met Jonny Imerman first at the YSC conference in Atlanta and was totally bowled over by his zest for life, enthusiasm and passion that no-one should ever be alone following a cancer diagnosis nor feel like they’re the only one with that cancer or at that age.

Jonny’s own journey in started when he was diagnosed at the age of 26 with testicular cancer. He found himself on a ward with men much older than himself and although he knows he was fortunate to have friends and family supporting him, he wanted to meet other young men in his situation. He was also acutely aware of the others in the ward with no visitors. Jonny did an interview for the Voices of Survivors site at www.voicesofsurvivors.org

Jonny set up Imerman Angels (www.imermanangels.org) in 2003, an organisation that introduces each cancer fighter to one survivor (“mentor angel”) of the same age, same gender, and someone who has already beaten that particular type of cancer. That cancer survivor would be an angel – walking, talking, living proof to inspire the fighter that he/she can beat cancer.

As you all know from this website, I spent many many hours seeking others who were diagnosed with Phyllodes and also hoped that they would be the people who were now my walking, talking, living proof that I could beat Phyllodes.

So, when I met Jonny, and felt able, I signed up to be a Mentor Angel. Yesterday, I received an email saying that they’d been contacted by someone newly diagnosed and could I mentor them. I can’t tell you how privileged I felt to receive that email and be a part of someone else’s positive journey to wellness.

Today, we’ve exchanged a number of emails and despite living in different continents, I was able to signpost her to our Facebook ‘Phyllodes Support Group’ and also a few members who lived nearby but mostly to listen, to answer questions and to hold her hand. She, like me a few years ago, said that just knowing there was someone else out there who was further ahead in her journey and understood.

If you’re reading this and could become an Angel, do…

small c event

Posted on 14/05/2012 by AnnaGoAnna

Shine Cancer Support is a network for younger adults affected by cancer. It was created Emma who was diagnosed at ‘the wrong age’ with cancer.

There are many ages that are ‘wrong’ for cancer. Of course all ages are ‘wrong’ for cancer and noone should have to be diagnosed, in a perfect world. What I mean is that, for example, when you find a lump in your breast in your teens or 20s, firstly you are told it can’t be cancer as you’re too young. Next it’s hard to find information that doesn’t speak about having cancer after having children, marriage or life in general. Rarely is fertility issues discussed as this isn’t the ‘normal’ checkbox that needs to be ticked for the majority of people diagnosed with cancer. Attending support groups often means you’re the youngest there and the discussions are about their children or grandchildren.

You see, inconveniently you’re too young for the standard cancer care support initiatives and too old for the paediatric care plans.

The isolation is enormous and often continues for many years due to lack of resources or community in which you can freely air concerns or worries.

Shine is an initiative that is attempting to fill this space. It’s run by patients and is intended to be an informal place (online and face-to-face) where people diagnosed with cancer in their 20s, 30s and 40s can meet.

Tonight I attended the first London drinks. There were only 8 of us at this first drinks meet. We met in a busy bar where ‘normal’ people were having an evening out. It wasn’t a ‘support group’ and we didn’t go around and introduce ourselves by name, cancer type and date of diagnosis (the usual introduction!). But we talked. We chatted about life. We chatted about problems we had encountered. We talked about how we overcame them. We talked about our families, about our friends, about our futures. The conversation was light, fun and frivolous…. Hey and we even laughed!!

Truly a great initiative and something to be encouraged. There’s definitely a gap in the care and support for young adults. Find out more and perhaps attend or support them? http://www.shinecancersupport.co.uk

St Paul D’Aria – talk by Lauren Pecorino

Posted on 03/11/2011 by AnnaGoAnna

The Paul’s Cancer Support Centre, based near Clapham Junction in South West London offer a range of services for people affected by cancer, for the diagnosed but also for carers, family members and friends. Several of my friends have attended their Healing Journey course and found it enormously helpful to get through the emotional and psychological impacts of being diagnosed with cancer. They offer a great many more services at the Centre but also via webinars.

However tonight I attended the Centre to hear Dr Lauren Pecorino speak about ‘Lifestyle choices that may reduce cancer risk: evidence based recommendations’.

She has written a book ‘Why Millions Survive Cancer: The Successes of Science’ which goes into more detail about the improvements worldwide in survival rates for many cancers and she believes that these improvements mean that “our attitude towards cancer now needs drastic change”.

As someone diagnosed with a rare cancer and indeed meeting so many more people diagnosed with different cancers, the subject of ‘is it my fault I have cancer?’ or ‘is it my lifestyle that gave me cancer?’ or ‘could I have avoided cancer?’ often come into discussions. Mostly at the darkest of hours and at a time when there’s the blame game discussion.

I get truly frustrated when I read articles in many publications (medical and non-medical) that imply that by eating, drinking or doing something you have in some way made a choice to have cancer. Some of the same publications then produce articles saying that the same things will in fact cure cancer! Just for a laugh have a look at this page http://kill-or-cure.heroku.com/

But the same applies for healthy living… if you have a sedentary job or perhaps work night shifts, you are also putting yourself at risk of cancer. Errr hellooo?

So tonight, Tish and I decided to pootle along to this lecture in the hope that we could come away with something conclusive. Was there in fact a food stuff that should be INCLUDED in our diet or one that should be EXCLUDED?

Sadly the lecture really was much of the same. Generalist in approach and undefined in advice.

She touched on the importance of ‘personalised medicine’ (a terrifically fabulous idea in principle but very hard to administer in the current thinking). She also spoke of components of some fruit and vegetables actually turning on genes that help protect you against cancer… but only in a general way and not all cancers nor for everyone!

I guess I felt a little cheated. I wanted some facts. I wanted an ‘expert’ to say X or Y will work with to reduce occurrence or recurrence of cancer B or C. I know it’s never likely that they’ll tell me anything about Phyllodes or indeed for Tish about Ovarian – the joys of rare cancer diagnosis – but I had hoped there’d be something new that I can share with others who are seeking hope and ‘informed choice’.

In conclusion I should add that there are many many pieces of research into healthier eating and lifestyle choices. This research is for all sorts of medical conditions, including cancer. I hope in the future this research is going to allow more personalised medicine and treatment. I would like to see ‘personalised medicine/stratified medicine’ (current buzzwords) to also include lifestyle advice as well as drugs prescribed. I believe there must be a more holistic approach to health generally.

I also know that, for many, the idea of eating 5 a day of fruit and veg or taking up running, just isn’t going to happen… however encouraging and motivating people to be more interested in what they put in their bodies and how they use their bodies must surely be the way forward. I would love the media to use encouragement and motivation instead of the current method of blame – particularly people who only have 4 a day or eat the occasional takeaway or didn’t go for a brisk walk today… it doesn’t mean they WANT to get cancer!

I also know many people who are gym bunnies and have been all their lives. They eat right. They exercise regularly. They don’t drink. They’ve never smoked. And still they are diagnosed with cancer.

It breaks my heart when I hear a cancer patient ask if they have caused their cancer because they liked milkshakes too much or a takeaway every Sunday night. I think they’ve enough to handle being diagnosed without feeling that they are in some part responsible!

I’ve not read Dr Lauren Pecorino’s book “Why Millions Survive Cancer” and I’m sure there are some fabulous tips and tricks for a healthier lifestyle. However I didn’t feel there was enough substance during the lecture to compel me to buy it. Have you read it?

Divine Woman Awards 2011

Posted on 28/06/2011 by AnnaGoAnna

I was recently nominated by two separate people for the Divine Woman Award 2011. The two people who nominated me don’t even know each other but know me – one from the US and one from the UK. Astonishingly they also nominated me for slightly different reasons… one for my work within the cancer arena focusing on survivorship, patient involvement and support. The other for my work within the cancer arena but more particularly for my phyllodes work – finding out more, probing and asking questions, sourcing new information and more importantly my helping others newly diagnosed and through our Facebook group ‘Phyllodes Support Group’. Divine Chocolate realised that I had been nominated twice and I was shortlisted and invited, with a plus1, to the Finalists Reception with 5 other entrants.

I didn’t win, but the lady, Carline Ikoroha, who did was very deserving and amazing… as were the other finalists. Here’s the press release that Divine Chocolate.

(http://www.divinechocolate.com/uk/press/press-releases/2011/6/divine-woman-awards-2011-winner-announced)

Here are the other fabulous finalists together with Livia Firth and Sophi Tranchell…

and of course my finalist certificate.

I guess the oddest thing about the award though is that I don’t feel deserving of it nor do I feel that I’ve done anything extraordinary or outstanding.

The one element of all that I’m doing and have done is that I really don’t want to be ‘centre-stage’ – it’s really not about me!

Other press:
http://www.retail-jeweller.com/winner-of-ingle-and-rhode-founded-award-announced/5027045.articlehttp://www.ingleandrhode.co.uk/blog/winner-of-the-divine-women-awards-announced/

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…

Life and this little unknown thing called Phyllodes

Posted on 09/02/2011 by AnnaGoAnna

I am still saddened when new people contact me via this site or we see ‘help me’ requests pop up on forums, twitter or other social mediums from people who have been told they have or may have a phyllodes tumour. Like me they are now on their journey of discovery to find out information and in reading their posts/emails I can hear the anxiety and frustration at not being able to find information. I know its not only a rare cancer but a rarer cancer (ie doesn’t even fall in the rare status) but the fact is we’re finding many more of us via these mediums. Many more people are finding us. We have over 150 people within our facebook groups – might not sound like a lot of people but we have to remember that these are the ones who have sought us out via the internet or social networks and won’t include those people who simply have their local resources of doctors, charities and libraries – of which I’m quite sure there are many many more. It also won’t include those who are younger or older and don’t DO the internet or perhaps aren’t as comfortable with using it for such personal issues.

We are however a fantastic group of individuals. Strong, supportive, empowered and informed. It amazes me at how from all corners of the world we can come together on Facebook and discuss concerns, hold one another’s hand, ‘virtually’ attend appointments or receive results and importantly ‘virtually’ hug one another or provide a ‘virtual’ shoulder to cry upon.

In recent weeks we have gained new members from quite literally opposing sides of the world. But we have also had not such great news of recurrences and metastases believed from the original Phyllodes tumours. Together we rally round.

My wish today is for my friends to keep strong and to believe that they can do this, to know that we’re with them every step of the way BUT also my wish is that there are clinical trials undertaken, that there is research done and more importantly that they work out why there is this rare cancer and a treatment plan to end recurrences or metastases… is that too much to wish for?

Sharon Fox Masked Charity Ball

Posted on 05/12/2010 by AnnaGoAnna

Through my journey I’ve met some amazing people. Many inspirational positive individuals who have taken their experiences and turned them into positive actions. One such person is Sharon Fox. Sharon and I met through Breakthrough Breast Cancer – we are both patient advocates. Sharon lives in Tamworth and was diagnosed with breast cancer at a young age, with small children and a busy life. She found that there wasn’t support for her in the local area and that in order to get the support she and her family needed, she would have to travel a fair distance – not possible when you’re very ill and have a family relying on you!

So, about the time when she was able to stand up again, she set out changing this. She put her story online via a BBC documentary. They filmed her highs and lows during and after surgeries and treatments. This raised the profile needed for her to be better known locally. She then set about finding an empty premises and then, the best bit, she put out a help request to the local community to help and support her in setting up a cancer centre in Tamworth! People came from everywhere to offer building works, heating engineers, shop fitters, carpenters, carpets, furniture, fixtures, fittings, gifts, kettles, items to sell and, volunteers. Within an incredibly short amount of time she was able to open the centre… not before she and her children sold their own items to raise extra cash to get it started. Selfless.

I was touched to get a mention.

So tonight I was more than happy to contribute something to her venture. I invited some friends to come with me, Liz, Kath, Zoe and I, dressed up, found masks and attended the Bells at the Belfry ‘Masked Ball’ this evening. What a fabulous evening. The evening started with a champagne reception then through to a stunningly decorated ballroom where the tables were sparkling, the food was excellent, the entertainment during dinner fabulous, a charity auction in which the bidding was ferocious and finally a live band and disco. Brilliant.

We left with a assortment of successfully auctioned goodies and a calendar. Here’s a few pics from the calendar of wonderful ladies who were affected by breast cancer posing for this calendar.

Loved the evening and know that this will have raised lots of cash to ensure the Sharon Fox Cancer Centre will continue for longer.

A wonderful write up on The Redfords website.

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.