Colonoscopy NOT!

Posted on 04/05/2011 by AnnaGoAnna

For many months I’ve been experiencing a lot of pain in my abdomen, swelling that comes and goes but is excruciatingly painful, headaches and dreadful nausea. There’s also been blood in my wee and also blood in my poo. Sorry if it’s too much information, just thought it was about time I was honest with you (as always).

I’ve been to the doctors several times and have been told it’s nothing to worry about. Then finally I was referred ‘urgently’ for a colonoscopy… several months ago! Fed up with waiting for this urgent appointment, in pain and worried, I’ve been chasing it up. Honestly apart from the pain and symptoms which have been pretty grim, it’s also painful, makes me tired and tearful.

Today didn’t help much. I had received a letter saying the appointment was today. I drove myself to the hospital to discover that I didn’t have an appointment. That they hadn’t sent me the prep to clear my bowel and that I also needed someone else to take me home as I’d be having anaesthetic. Oh and that I wouldn’t receive the procedure at this hospital anyway. Can’t tell you how fed up I am today.

I just want to find out what the blinking bananas is going on with my body.. it’s getting worse!

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

Olympic tickets go on sale

Posted on 15/03/2011 by AnnaGoAnna

For once I was up with the larks, coffee made and drunk, breakfast foraged for and disappeared. I anxiously waited by my computer for THE moment.

What moment you might say? Perhaps it’s passed you by?

Then the clock ticked over, it’s time!

The first time to be able to put in your request for 2012 London Olympic tickets. I am soooo ready for this. I clickety-click away and put in for quite a few events. In fact I’m sort of worrying that if I do get them all, just how I’m going to pay for them. But then again the likelihood of that is very little.

I remember doing this when I was in Australia. Dave and I put in for quite a few events each and we ended up with 2 pairs of tickets each. We did of course manage to obtain other tickets or go along with others who had a spare. I saw 8 different events in Sydney, truly amazing.

I’m not sporty. I like sport. I like watching it. I play a little. I don’t understand the off-side rule (despite it being explained a squillion times). I don’t know who all the players are or where anyone is in any particular league.

But I love being a part of something amazing. I love cheering on the underdog. I love seeing how a game/match/event changes in a heartbeat. Mostly though I love the ‘possibility’.

What an incredible event. I can’t wait. I wonder what tickets I’ll manage to get. My application is in…

Internet – friend or foe?

Posted on 07/03/2011 by AnnaGoAnna

20 years ago when diagnosed with cancer we would have relied upon the information and resources provided by our medical teams. Perhaps we may also have covertly visited the library to read up on any information that they could provide. Perhaps, in a hushed voice, we would have spoken to family members or colleagues about the c-word.

The internet has opened up the whole world to each of us who has online access. We can pop a word or phrase into a search engine and up comes the results from Australia, India, Europe or perhaps, from just up the road. Is all this information helpful? Does it make you question your medical treatment or prognosis more or does it help with decisions? Do you search for a better result with each click?

My personal experience has led me to love and hate the internet in equal proportions. Sometimes my best friend and at other times my arch enemy. On the one hand it provided instant access to information, online forums, support groups and a world of possibilities. On the other, it was confusing, opinionated and at times terribly misleading.

I trawled through pages and pages of returned Google searches, I yahoo’d, Bing’d, Asked Jeeves and a squillion other methods to find anything and everything I could. I would go from page to page eventually ending up at the end of a Google search… you’ll know yourself that you rarely flick past page 3 of a returned search result but I would go to the end in the hope that there would be a breadcrumb there.

I found information, I scanned the results, I wished I understood medical jargon better and my thesaurus became a new friend (my doctor friends, I’m sure, were fed up of me calling them and pronouncing names wrongly whilst asking what something meant!). I read the words and all the pages and often read paragraphs that weren’t even there. But what I realised after a while was that I was only retaining the worst statistics, creating a world that was more frightening than the page of information suggested, I guess it was like being presented with a page of 20 points, 19 great ones and 1 not so great. I’d only remember reading the 1.

So, was the internet useful? Yes, absolutely. But I had to learn (to teach myself) to read it all, to focus on the positive points. To reread the positive 19 points over and over until they were all that I could remember. To drink in the information that was good and to read, then acknowledge and then discard the point that wasn’t. I had to learn to look to the positive and re-write a paragraph so that it was right for me. I learnt to store information for a later date by reading it and putting it to the back of my mind until I was ready. Sometimes because I knew that a situation would arise that I would need to draw on that information and at other times because I needed to retrieve it only when I was with a friend or my doctor to discuss it and understand it further.

I think the biggest lesson that I will share with you, is learn to love the internet and the information it presents to you. Read everything you wish and to ignore things that you find tough. Don’t feel guilty about not reading every word and stop when you’ve had enough. Take a pen and paper and write down a positive thing from every article/page you read. List them like bullet points and refer to them later when the other 1 ’not so great’ point pops in to your head. If you’re unsure of content or stuck on what something means, print it out, highlight it and ask a professional now. If that’s not possible, use it as a reference point another day and look for more information that may make the first article easier to interpret.

Another important lesson… don’t believe everything you read! It may be that the writings in a forum, blog or article aren’t that of a professional but someone’s opinion. It may also be that the text has been taken out of context or that your intepretation of their written word would have been different if they’d been able to deliver it to you verbally. If you find something that you’re not sure about, seek out the ying to the yang; or print it out and ask a friend/medic for their interpretation; or simply, bookmark it to read again at another time.

One final word, there’s a lot of information on the internet and despite pages like www.internetlastpage.com there will also be more written and available to you. But also remember to heed the advice from http://www.internetlastpage.com and “turn off your computer, and go have fun!”

Isolation

Posted on 05/03/2011 by AnnaGoAnna

Through my own experiences and sharing with others, I realised that ‘surviving’ after a cancer diagnosis is far more than regular checks and/or medication. There is a huge emotional and psychological impact, there’s a new need to cope with hearing those words ‘you have cancer’, a re-evaluation, a recognition that procrastination no longer has a place in our lives and an eagerness to live, to thrive and to survive. I say that not to be glib or assume that it is easy either. For many the ‘reality’ hits us like a ten-tonne truck often at the strangest of times and may even be quite some time after diagnosis or triggered by something random.

For me, I realised the impact for the first time had been when leaving the hospital after the ‘follow-up’ appointment after my second surgery. I heard the swoosh of the first set of glass doors close behind me as I exited the hospital with my friend and then the swoosh of the second set of glass doors opening ahead. We both stopped mid-door and my friend turned to me and said ‘Do you feel like you’ve been dumped?’. She had managed to verbalise exactly how I felt. I felt as if a partner had just walked out of my life and with whom I’d relied for an intense but short period of my life (surgeries and treatment). I felt alone. I nodded and we walked through the second set of glass doors to the car and drove home in silence.

I should have felt elated, shouldn’t I? I mean they were ‘dumping me’ because I was done for now. OK so I had regular checks in the diary for follow up scans and there was still the discussion as to whether radiation would be required… but essentially, they were saying I was doing OK. I should have felt good. I should have been smiling and laughing and celebrating. Instead it was an overwhelming fear and grief that consumed me.

When eventually I went to my own house, I remember feeling even more isolated (and yes I really did live on a remote farm cottage overlooking fields!). I also remember spending hours on the internet, mostly in tears, desperately searching for answers. Or staying in bed as long as I possibly could trying to avoid the day… but never straying too far from a box of tissues. I felt as if I was never going to stop crying and I didn’t really understand why. After all I had had two surgeries. My surgeon felt he had got the tumour and sufficient margins. So what was I grieving?

I think with hindsight I also felt guilty. Why had I come through it all? Why was I different?

I’ve got sooo much to tell you…

Posted on 03/03/2011 by AnnaGoAnna

Gosh life has been so busy and full. Not enough minutes in a day to be able to update you and do everything that I’ve been up to. I promise to update you on bits and pieces very soon but first some quick summaries that I’ll come back and fill in later.. I went to Scotland which combined with meetings, I met with both my brothers and their families and we scattered the last of Mum’s ashes. Duncan had found a spot overlooking Loch Lomond… quite an adventure getting there mid-winter and I’ll expand on that when I pop back later.

I was back home for 36 hours before heading off to Orlando, Florida and my second year at the Annual Conference for Young Women affected by breast cancer (now known as C4YW). I learnt so much attending the seminars and workshops but mostly it’s the community and support of being with people who really understand it. Being my second year I was also able to talk to some of the newbies and help them too. My oldest buddy, Jenny was there too and once again we roomed which allowed us time to gossip and talk about the old days and also openly talk about the past few years and its impact on us. AND there were even more of my Phyllodes’ sisters there…. I cannot tell you just how special and meaningful it is to be able to spend time with them, to give and receive a hug and to be able to talk about being diagnosed with this rare cancer.

One of my sisters, Andrea Lambert was there this year. We hadn’t yet met in person but Andrea has been a constant support to me from the first moment Trish introduced me to the Phyllodes Facebook group. I can’t explain how much it meant to me to be able to give her a hug.

During the time together we all spoke about doing more advocacy and awareness of Phyllodes. If having the Facebook group has taught us something it’s simply that there are people out there who are diagnosed and it’s not just us! Andrea talked about doing a TV piece in conjunction with her husband’s role as a hockey coach. The piece was aired last night on Fox6. Do take a look – click here Andi is amazing, beautiful, strong and I’m proud to say, my friend.

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’.

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?

Breakthrough breast cancer

Posted on 04/02/2011 by AnnaGoAnna

I am now back home after a couple of days with the team at Breakthrough Breast Cancer. Every year they invite local and group voluntary representatives to an annual conference in their London office. During the conference we listened to presentations about the charity and in particular their incredible research work that they have done over the previous year and are conducting in to both treatment and prevention of breast cancer. We are asked for our feedback and participate in workshops about the charity, their work and also felt our input was valued.

Breakthrough’s pioneering work of PARP inhibitors has now led to over 50 clinical trials being instigated around the world and potentially could make a big difference for many thousands of cancer patients, not only for breast cancer. Wouldn’t it be a fantastic world if less people were ever diagnosed in the first place? Particularly on a week when it is announced that the lifetime risk of getting breast cancer has risen from one woman in nine to one in eight in the UK.

Breakthrough also do some great work with their campaigning to make everyone ‘breast aware’ – as you know this is something that I never did and following my finding a lump will never know how long it had actually been there or perhaps if I’d found it earlier would it have been benign not malignant? Simple – early detection saves lives. Information can be found here and they even have a helpful iPhone app that will remind you to check and show you how.

I also learnt more about their campaigning and advocacy work. Particularly key given the new changes proposed under the new government to the NHS and something that Breakthrough continue to lobby, discuss and challenge with the Government to ensure that breast cancer remains on the political agenda.

At the risk of sounding like my own party political broadcast for Breakthrough, they do an incredible job but always need support. That support maybe helping with lobbying, writing to your MP, keeping up to speed with changes, knowing about research, sponsorship and fundraising or simply telling others how to be breast aware. Often Breakthrough may slip down the ‘charity awareness’ scale because they prefer to spend their big bucks on research rather than advertising (and I know that’s where I’d like them to spend their money too), but they do play a vital role. So if you have the opportunity please support them.

Also in attending the conference I am once again reminded by the passion and drive of people wanting to make a difference. There were men and women at the conference who had been affected by breast cancer. Each and everyone had their own story. But one thing that everyone had in common was passion for life. I’m honoured to meet with people like this and touched by each and every one.