Skin clinic

Posted on 02/11/2011 by AnnaGoAnna

Being fair skinned and someone who has had moles/bumps removed, I do try to keep an eye on my skin. In the UK there isn’t the awareness about skin cancer nor moles going ‘funny’ as there is in Australia.

I remember when I lived there it was just part of ‘life’, nipping annually into the cancer care clinic. You’d strip off down to your undies and stand on a little podium. Then a dermatologist would then peer and peek at your every inch with a magnifying glass. They picked up a ‘wrong-un’ whilst at this clinic and I was booked in and it removed within days.

Everyone went along and it only took 10 minutes of your time. You could do it in your lunchtime. Medicare covered it so you didn’t worry about the cost.

What was slightly disturbing about it though, was that every single dermatologist that saw me over the years was British. They had chosen this speciality and said that there weren’t jobs in the UK or a proactive role in picking up skin irregularities early. Skin cancer is one of the most common cances in the UK with the numbers on the increase. As with all cancers there is an importance upon early detection, yet we don’t promote it?

Cancer Research UK have some great information “SunSmart”

I’ve recently noticed that the ‘scar’ where a suspicious lump was previously removed has been getting bigger. There are also (and have been for quite some time) several moles that are a bit itchy. So I overheard that my GP surgery has a skin care clinic once a month and I’ve booked myself in.

Today’s the day. I put my bestest undies on and figured that it’d be similar to the one in Oz whereby my whole bod (including the areas that I can’t see myself – ie my back!) would be inspected. However what happened was I was required to tell them which ones itched and show them the new lump only. There wasn’t an examination of other moles nor an offer to do so. This was also done by my regular GP not a skin specialist. Bless him (and you know I think he’s fabulous), but he’s not a skin specialist. Hey ho, I had the ones I was concerned about looked at anyway and a few little ones frozen off.

What I would love to see (and I’ve suggested it) is that Macmillan Cancer, who have a business alliance with Boots The Chemist, take charge and put a project in place. Through the Boots alliance they have access to virtually every high street in the country.

How about a campaign whereby canvas portakabins are erected in stores. They just need to be big enough for someone upon a step to be examined by a skin specialist. There could be a ‘roadshow’ of specialists travelling the country, checking skin and referring as necessary. Surely Boots could sponsor it? I’m sure most people would buy a sandwich or do a little shopping whilst they were in the store. People could pop in during their lunch breaks or nip out in the afternoon.

What would that cost in real terms? And then, balance it with the cost saving to the NHS by picking up suspicious skin problems early?

Phyllodes Sisters

Posted on 30/10/2011 by AnnaGoAnna

During my journey I have spoken of my ‘Phyllodes Sisters’ who have been there for me in so many ways. The majority of these ladies I met online via the Facebook group ‘Phyllodes Support Group’ and some I have, as you know, had the pleasure to meet at the Young Survival Coalition (C4YW) Conference in the US. I have mentioned a few by name but mostly by reference to the wonderful team who mean so much to me.

Today we hurt. Today our beautiful Jolene lost her battle with cancer. Jolene was a shining example of how to live but also an example of how to die. Diagnosed first at the age of 17 with her first Phyllodes tumour, then with metastases to other parts of her body and new rare and also common cancers too including chrondosarcoma and DCIS since her first diagnosis. She’s had surgeries, chemotherapy and radiotherapy. After two major surgeries earlier this year to remove tumours from her jaw, the jawbone being replaced with bone from her thigh, first one side and then a recurrence on the other side of her jaw a few weeks later. She thought she had beaten cancer once more.

After experiencing headaches she fought to have scans on her brain and they discovered yet another fast growing rare tumour behind her eye. Jolene made the decision at the age of 25 not to have any further surgeries or treatment. She decided that her quality of life was more important, even if just for a short time, than to undergo surgery that they couldn’t guarantee would work, nor would possibly leave her blind or disabled. The medics gave her 3 months maximum to live.

Hahaha (and as I type that I can hear Jolene’s laughter)… Jolene wasn’t going to take that lying down and steeled herself to have the best ever time that she could, in the time left to her. I saw daily posts of adventures. Jolene spoke of a closeness that was evolving each day with family and friends and an amazing mother-daughter bond and one with her grandmother too. She amazed us all at her life and laughter and also her compassion for others whilst she faced this every day. And we held her hand on the days it seemed too much or when the pain was unbearable.

In the early hours of today she went to sleep. On her terms and only when she was ready to go. She was surrounded by her family and friends and left peacefully.

For her friends and family there is now a huge gaping hole where Jolene once lived in our lives. I personally cannot believe I won’t hear her laugh anymore or read about the mischief she creates on this earth. However we’re all absolutely sure that the angels are partying tonight.. and if they are at first reluctant, Jolene will have them dancing and giggling in no time.

Jolene VonMillanich – 19 November 1985-30 October 2011 – In the Arms of the Angels by Sarah McLaughlin

Community Pharmacy Project Planning

Posted on 27/10/2011 by AnnaGoAnna

I have been asked to be part of a project in South West London that is trialling the further inclusion of pharmacies and pharmacists in the early diagnosis of cancers.

In the UK we’re not great at recognising that pharmacists really are an overqualified underused medical resources in our stretched NHS system.

We know from research carried out (and logical paths of thinking) that many people will pick up an ‘over the counter’ quick fix for a cough, cold, ache or pain etc rather than going to the family doctor/GP. This has got much more frequent in habit since changes to many GP practices whereby appointments are not easily made and indeed to do so, for some, means taking the day off work to arrange the appointment!

We also know there are large numbers of people in the UK who have not signed up with a GP. They’ve perhaps moved areas in the UK, moved from overseas, don’t speak the language, cultural differences or can’t guarantee a female GP or perhaps the paperwork is too much for them. There are many reasons.

We know that many people will also visit the same pharmacy on the way to work, school drop-off, work or to the train station. Pharmacists see much more than we think and indeed are able to look at patterns of habits.

A good community pharmacist will also know a little about each customer. They will ask questions and be discrete. They will and should be able to let someone know when they should in fact be seeing a GP or perhaps have concern about the ‘over the counter’ medicine that is being taken whilst also knowing what is ‘prescribed’.

Pharmacists however don’t have the ability to refer patients in for scans if they believe something to be far more wrong than a simple cough…. Well until now!

This project is working with a number of community pharmacies to see if they can identify early people with lung cancer. For example if someone comes into the pharmacy very very regularly coughing and buying a linctus, it could be deemed as a sign that there is something more wrong. Or perhaps they’re constantly buying bottles of gaviscon, it could be deemed as a sign of something else.

They have the opportunity to discuss other symptoms with the customer and perhaps to urge them to seek further medical advice.

This particular project is looking at the ability of pharmacists being able to refer directly to hospital for relevant scans/checks based on the symptoms, questions and responses.

If a customer is ‘cared for’ by a pharmacist and urged to go straight to hospital, don’t you think they’d do that straight away. If they were urged to get an appointment with their GP, they may not have one or they can’t afford to take a day off work etc so it may pass and they may buy their ‘over the counter’ medicines from another pharmacy.

It will truly be very interesting to watch this project take shape and see if we can identify a marked improvement in the early diagnosis of lung cancer (the main one that we’re targeting first and that we will be able to monitor results). If so, it would be something that we would look at rolling out nationwide AND look at what other conditions could be covered in this project… not just cancer but other conditions that require early detection and diagnosis.

Watch this space.

Cancerversary

Posted on 16/10/2011 by AnnaGoAnna

Happy Birthday Granny. It’s funny how I know it was my Grandmother’s birth date and that I now remember it every year. I didn’t when you were alive but now that it’s interwoven with my cancerversaries it’s become a significant day to me. It was the 16th October 2009 that I was told the pathology had identified a rare cancer and a day when the bottom fell out of my world…. but also a day where I felt that you, Granny, had been looking out for me and holding my hand. Thank you.

I’ve not updated a great deal on the website this year, partly as there has been little to write about anything ‘new’ about Phyllodes (for those of you who find this site looking for information); partly because there’s not been too much about my own health that has been newsworthy or that I’m willing to share; and mostly because I don’t know what to say.

The Conference has been put on hold following delays by the Charity Commission in our registration. These delays in turn meant that the financial year end for many corporate sponsors was missed and tens of thousands of funding lost as a result. It had been hoped to postpone the event – the structure, speakers and workshops being arranged and set up – however the venue, despite being given 7 months notice, would like an astronomic cancellation costs. Long story short but this sent the whole project into a spin and has, for the timebeing, been shelved. My decision was not taken lightly and there were a number of factors in this decision. The most important was that I was worried that we would raise more funds for the project which may end up in a corporate venue bank account rather than put toward the project itself! I was also aware that the 24/7 work on the project had been making me quite unwell and was undergoing a number of tests for a large part of 2011 to establish what was wrong with me – to date still inconclusive. I was also exhausted and feeling utterly battered and bruised by the experience. However the upsides were that I was being approached regularly to sit on a board or committee at local and national levels within cancerland and from where I may well be able to influence the very changes that the Conference would have been able to do, ie survivorship and patient empowerment. I also received some great feedback from a few UK cancer support charities to say that on the back of meetings with me, they had altered their programs for cancer patients and carers.

I am and have been devastated that the event is not going to happen – it was my baby; I know how much of a difference it would have made to attendees and others; it was addressing head-on issues that cancer survivors ask about all the time but we Brits aren’t great at answering; and also I’ve invested an enormous amount of my own money into it. However I do know that I made the right decision, for now.

I have, very recently, been approached by two parties, one a volunteer organisation and the other an NHS group. Both of them would like to utilise some or all of my conference structure, speakers and workshops in their own events and clinics. I’m looking forward to assisting them with their projects.

For me… I know that I need to spend some time on me. Some time looking at what I best need to do and how I do it. I know from my recent episode in the GP surgery and others that I’ve not told you about that I need to deal with some demons of my own. I’ve learnt a great deal in this process though. Not least about friends and family. I’ve also learnt that I need positive people in my life.

Macmillan Voices Conference

Posted on 15/10/2011 by AnnaGoAnna

As a patient advocate I often get asked to attend conferences and meetings. Part of my role as a patient advocate is to share my learnings both as a patient and subsequent to treatment. The piece that is invaluable to organisations is that patients can work independently of any charity or company mandate. By this I mean we are able to speak our minds and say what we think or what we have learnt without needing to be loyal to the green of Macmillan or Pink of Breast Cancer or Yellow of Sarcoma.

Macmillan Voices are a scheme set up for patients and carers to have a ‘voice’ within Macmillan and help shape future services by their involvement. It is often by way of focus groups on particular subjects (I’ve done many of these for them) or by completing surveys or reviewing leaflets and documents before publication. The Macmillan Voices Conference is an annual event where the Voices get the chance to get together. Throughout the 2-day conference there are workshops and networking groups.

There is clearly a great deal of investment from Macmillan in the Conference and I truly hope that the work we, the Voices, are doing during the Conference is used effectively. I’m acutely aware that this is funded by people’s hard earned money donated via some fundraising event.

Our Conference Newspaper/Programme

We are welcomed to the Conference during the opening plenary by Juliet Bouverie, Director of Corporate Development at Macmillan.

Juliet introduces herself (she’s new to the role) and tells us a little about why she’s passionate about her role in Macmillan. She also talks a great deal about the fundraising at Macmillan, some of the events that have happened and how grateful they are for all the monies raised. (Sadly to me, this came across as another plea for money and since we’ve all given up our time to be here and are Cancer Voices doing many things for Macmillan it feels insulting to ask for more!).

Juliet then gave us some facts and figures about fundraising, numbers raised, spent and people living with cancer.

This last year £137m has been raised of which £97m was spent on cancer support.

In 2030 Macmillan believe that the numbers living with cancer will be double that of today. Currently 2m people living with cancer. In 2030 they estimate 4m people living with cancer.

There is an urgency not only for a cure for cancer but to ensure there is support and assistance for those living with and beyond a diagnosis of cancer. Often the emotional and psychological aspects are overlooked in favour of the physical. All three aspects need addressing and supporting.

Juliet also spoke briefly about a Macmillan project to run training courses for all Boots pharmacists. Clearly they have a corporate deal with Boots but I’d like these courses to be offered to all pharmacists no matter which company they’re employed by. Personally I rarely see the pharmacist in a large Boots chemist but am more likely to chat to the pharmacist in a small chemist and aware that they often have more time for me too!

Networking Group

Within our first Networking group we heard a story from another Voice about her experience of surviving cancer. This led to a group discussion about survivorship and where people had found support and information. We discussed the survivorsforsurvivors website, the Cancer Survivor’s Companion book, support groups within Facebook and Twitter and of course charity-led online forums. As also discussed how to ensure that any late effects from cancer treatment, particularly from childhood cancer treatment, was also supported.

I think it’s so important that doors are left ajar for people who have gone through a cancer diagnosis at any age. Many people ‘just get on with’ cancer and then are left floundering some months/years later when they think about what they’ve experienced. Or that side affects take very different forms and are at very different times in ones life but still need addressing and supporting when they manifest themselves. There shouldn’t be a time limit on getting support.

After lunch we headed off to our Workshop One sessions. I had chosen ‘Treatment Summary’.

Treatment Summaries are a fascinating beast and once that has had much airtime of late. Essentially ‘Treatment Summary’ or ‘Patient Passports’ are a brief medical history of a patient’s journey with cancer. They are much like the ‘red book’ that parents were given when I was born and that documented all vaccinations, Dr visits etc until I was 16. Every parent managed to keep these books safe and take them with them on every medical visit their child made.

What the Treatment Summary/Patient Passport is aiming to do is to keep a full record of the medical journey in one place. As a patient I am all too familiar with having to constantly ‘remind’ or tell my history with cancer, every date and every detail. The problem with this is that I may forget some detail or having not understood the medical importance of a piece of information, have missed it out. This then leads to problems. For the old/infirm or (err) unwell this is even harder to manage. Particularly if they have different family members or carers present at different consultations.

Macmillan have devised the Treatment Summary template

All very valuable information and is a great idea.

The barriers to this would simply be asking the medical team who are already stretched, to complete yet another form, ask them more questions and then to organise a method to send these treatment summaries to the GP (in addition to any usual paperwork).

Another barrier may be that each Trust/Hospital/Clinician may require slightly modified forms or information. Then if the Treatment Summaries appeared in different formats at the GP office, they becoming confusing and laborious to read meaning that they may end up in a file unread.

BUT equally disappointing was that Macmillan (Juliet Bouverie was present in this workshop) appeared to be completely unaware of the other organisations, charities and hospitals that had been working on their own Treatment Summaries. We have been discussing it on committees that I’m involved with at the Royal Marsden, NW London Cancer Network, SW London Cancer Network, C&W LinK for quite some time and I’ve seen the results of other people’s work.

The Patient Passport (very similar to the Treatment Summary) is now live and working well for many. There are ones by Royal Marsden, Chelsea & Westminster, West Middlesex, East Cheshire, NWLondon/Imperial and many more. Some of these are ‘advertised’ as being required for vulnerable patients but can and are used for many more than just the ‘vulnerable. There are also private companies who sell ‘Patient Passports’ allowing the patient to keep a summary of all their treatment records and to take these with them to any medical appointment. Much like our parents did when we were children. Juliet seemed genuinely surprised that anyone else had thought of the idea of Treatment Summaries and promised to investigate.

I’ve heard the argument that we would lose our patient passports. How many parents lost their red books?

The difference between a Patient Passport -v- a Treatment Summary is that the patient/carer is responsible for their own information. This is in addition to the information shared between health organisations in the ‘normal way’ but adds another level of information easily accessible and digestible that the patient/carer can produce at every medical appointment… and update at the appointment too.

What frustrated me about today’s workshop was the complete lack of awareness of any other organisation or NHS Trust work in this area. Macmillan have spent, I’m sure, a great deal of money on this project without consultation with others. As it is there are perhaps already too many Treatment Summaries out there. A GP in West London could well get sent 4 different types from the list of those already published. How on earth are they meant to know the differences on each? Most urban GPs will have 6,000 patients in their practice of which approximately 200 will be living with cancer.

Dinner

In the evening of the first day of Conference there is a dinner to which all attendees are invited. Always a good opportunity to meet new people and catch up with some old faces too.

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Day 2

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Our day begins in the main hall with a presentation by Michelle Soan, Inspiring Millions Programme Lead. She spoke to us about a new project called ‘Inspiring Millions’ as a way that we can spread the word about Macmillan and the reasons everyone should be inspired to fundraise for Macmillan. I can’t help but feel that since we’re all Voices attending the Conference the ‘hard sell’ is overkill but hey ho! Here’s their video explaining Inspiring Millions.

Workshop Two – Talking to the Media

This workshop was aimed at those of us who are often asked to talk about our experience, particularly with reference to the TV, newspapers and radio. Many people in the workshop were able to share their own experiences of working with the media. For many it went well but for others they explained what had happened when they had been put on the back foot or perhaps hadn’t been briefed about the discussion properly. Many also spoke of the emotional aspect to share your story. It’s wonderful for others to hear and understand they are not alone in their own diagnosis but there’s a warning that often bringing up your own story brings with it memories or feelings that you’ve long since buried.

Some hints and tips from this workshop:

Media is often very reactive to what’s happening in the world. Therefore you may be asked to participate with little or no notice. Always be prepared.
Some TV/radio can be pre-recorded and edited. Be aware that punchy shorter statements are more likely to make it into the final version and not on the cutting room floor. Therefore word your important messages well.. and briefly.
Always ask, when first contacted, if the piece will be live or recorded. If live, how long will you have to speak. Prepare accordingly.
If your being asked to be interviewed for a written piece, ask to read it before it goes live in case of any inaccuracies.
Ask what sort of questions you may be asked and if there are any you can see before the interview.
Ask for a copy of the finished film, feature, interview or piece. It’s not always possible but if you can retain a copy for yourself, it will be useful.
You don’t have to be an expert on the issue at hand but rely on your experiences and signpost to experts you are aware of such as Macmillan.
Its useful to have 3 key things you want to get across during the interview. Then if you get stuck with a question you can guide it to one of these points.
Have some water to hand so you don’t get dry throat.
During filmed interviews always look at the reporter not the camera.
Be aware that you may feel you have been cut short during a live interview. This is because of time restrictions not something you’ve said.
Try to smile a little. Even on the phone or radio you can ‘hear’ a smile.
Take a deep breath and relax.

Workshop Three – We take information forward

This workshop related to a number of information resources:

Promoting Information Prescriptions – This system that was created and started by NCAT. You may recall that I spoke of my involvement as a patient reviewer here. My mention of it from the NCIN conference and my speaking at the recent Learn and Share event.

So this was where the project had got to… Macmillan had taken it over. No wonder why the wonderful reviewer system had broken down. How incredibly sad that NCAT had a host of trained volunteers who were ready willing and able to review, write and process the information quickly and efficiently. So that many information pathways can be put into the system and accessible to people needing it at a time when they need it. Why on earth wasn’t this aspect of the project taken forward and at the very least these trained volunteers asked if they’d like to continue the project for Macmillan instead of NCAT?

During the workshop we have a walkthrough of the system and I’m astounded at the level of basic information there now is for cancer. It all appears generic and I know that there is little hope of getting any information about any rare cancers or support for them from the system. Have a look here.

Getting involved in Information & Support Services – Macmillan run over 140 cancer information and support services across the UK. In hospitals, libraries, community centres and hospices. The services offered range from information about specific cancers, treatment options, signposting to relevant clinical, social care or obtaining travel insurance, understanding the information or simply having time to talk. Each centre is run by a team of people including an Information Specialist and trained volunteers. Cancer Voices are encouraged to volunteer.

Getting Involved in reviewing books – Macmillan use reviews by people affected by cancer to help compile a list of suggested books for use in public libraries and information centres. Reviews are also added to Macmillan Cancer Support website. A link to a review of the wonderful Lisa Lynch’s book ‘The C-Word’ here. Cancer Voices regularly get asked to review books.

Promoting core book list in libraries – Macmillan have put together a list of core books that are recommended to librarians about cancer. This list should allow them to make informed judgements about which books to stock, how to select and appropriate range of materials and when to replace books. This guide will also enable to librarians to recommend specific books when asked by the general public. Cancer Voices are being urged to get involved by working with Macmillan to contact libraries local to them.

The Conference closed with a session entitled ‘One Voice’. The programme said this would leave us “feeling positive, energised and confident.” Sarah Warwick who hosted this session asked the group to stand, dance, move and sing. An interesting ask and very isolating for those that were in wheelchairs, crutches or unable to move easily. Even harder for those with a tracheostomy. As I watched the group of attendees cautiously attempt to follow the instructions, I also noted a trail of people heading for the door and home. I shortly followed them out. Furious on behalf of all those who ended a two day conference where they had volunteered their time, energy and commitment to Macmillan to leave feeling humiliated that they couldn’t participate in the closing session. I’m quite sure, like me, they didn’t leave feeling any kind of positive, energised or confident.

Joanna Hall Training Camp

Posted on 10/10/2011 by AnnaGoAnna

Since attending the Walkactive Introduction in July, I’ve been keenly keeping up the walking. Once a week I head into Hyde Park for a training session with Joanna. It’s great fun with lots of fabulous people. I’ve also discovered new parts of Hyde Park that I didn’t know existed as well as feeling like I’m getting there.

On my own I’ve been attempting to do at least 7,000 steps a day to keep up the fitness. I’ve got such a long way to go to get my fitness levels back and to lose some weight at the same time but it’s a start. My ankles and calves play up on occasion but if I don’t do anything stupid it’s manageable and I need to do it to get fitter so a little pain can’t be a bad thing?

What I needed was a short burst of uber fitness and so I signed up for Joanna Hall‘s training camp in La Manga. I’ll confess that the lure of sunshine also played a factor. How much easier is it to get out there and exercise when the sun is shining?

I opted to keep costs down and share a room with a ‘stranger’. Turned out to be a very lovely lady by the name of Elizabeth. Ooh we’ve had a jolly good giggle all week – a perfect roomie for this trip.

I received the itinerary shortly before we left and can’t help but note that I was a little aghast at the early mornings ahead. Eeek.

What a totally fabulous training camp (errr bootcamp!). The early mornings were a struggle to get out of bed for. It was still pitch black! However when we were out there doing our stuff around the golf course pathways and watching the sun rise over the hills, it was stunning. The only sound was our footsteps and the odd brrr of a lawnmower as the grounds team got the golf course ready.

Evidence that I can get up early and do exercise! Honestly though it felt amazing. We’d then head back to do some stretches in the icy cold pool. Followed by more stretching on the rooftop whilst watching the sun finally rise. What an amazing view (the sunrise not us!).

A short break for a beautiful breakfast on the terrace. We all fell a little in love with the Eggman… boy he can cook eggs, anyway you want them!

Just enough time to digest our breakfast and we’d be off again. Either a technical session on the impeccably groomed football pitches, a walk to the ocean with hill climb intervals…

Or the dreaded 7km mountain climb. The path went on and on and the sun got hotter as we climbed… but boy when I finally made it to the top it was a very special view.

La Manga resort is as beautifully groomed as any great golf course should be. We timed our walks to avoid the golfers (they’re not up early for the sunrise walk) or we’d be ‘off resort’. The only exception was for our return from the mountain climb with special permission granted for us to return along an agreed route with only a couple of golf holes and were asked to pause, if necessary. On our return however one ‘lady’ golfer decided to take a pot shot directly at us! What a pity to be so pathetic. We’d deliberately waited well behind the tee for the group to take their shots and then to gather their buggies and start walking up the fairway. We had then walked around the corner, along the path and were heading for home. So for her to go back and take aim was utterly ridiculous. Fortunately she missed but it did make me seethe!

A fun dinner on the final evening with great food and wine (although perhaps we should have abstained… ahem!)

Where I received this award!

An invigorating holiday/bootcamp/training camp and I returned feeling so much fitter, more supple and healthier. Great fun group of people and hugely encouraging trainers in Joanna and Ange.

Cancer Research Share Event

Posted on 22/09/2011 by AnnaGoAnna

Many charities and NHS divisions ask for patients and carers to share their experiences via a presentation, a video or a talk to staff. The premise is always that this helps their staff focus on why they’re doing a job and perhaps understand aspects of their services from a ‘user’ perspective.

I was asked to speak this afternoon at Cancer Research to a group of new members of staff who’ve joined within the past 3 months. A mixed audience of all levels of staff, some of whom will be working in a clinical setting or a lab, others in an office, some on fundraising teams and others within the media team.

I prepared what to say. The outline of what I wanted to say was:

Introduction and thank you for invitation
Who I am and my journey
Why you’re doing what you’re doing
Thank you
The future

Sounds simple, doesn’t it? I’ve had many sleepless nights thinking about that I’m to say, how it will be received and if I can say it at all. It’s hard to talk about some aspects as I’ve safely stored those in the mental ‘do not revisit’ box and need to dip in and get it out. I also know that the patient experience is so valuable and even the heartstring stuff is useful to ensure that people remember why they are doing the job they’re doing.

So when the event was cancelled this morning I’m not sure if it was relief or disappointment I felt. Certainly I wished I could get back that missing sleep from the past few nights!

2 years on reflection

Posted on 09/09/2011 by AnnaGoAnna

Two years ago today I received the results of my biopsy. They told me that I had a benign fibroadenoma and that this could easily be removed, nothing to worry about and bish bash bosh, I’d be back to my old self in no time. So much so my chirpy little entry on this site for 9 September 2009 reminded me that I had discussed renaming the procedure with my consultant to mallowectomy as it didn’t sound as harsh as lumpectomy!

Worst still the line:
“At least however we don’t have cancer in our family history and I’m just lumpy bumpy.”
I can’t tell you how often I replay that sentence in my head and how sad it makes me that I was just soooo damn wrong.

That was how I felt at the time. That was how my day was going. And that was (at that moment in time) how it was going to be, just a little blip. I think you can read the relief in my entry of knowing that I didn’t have cancer. But wow what a rollercoaster there was ahead of me.

Two years on, I’m ‘cancer-free’. That is to say the scans have told me that they got it all and there are no recurrences in the breast tissue. I can’t tell you any more than that. There is no real end date either. I know that may sound odd or strange but where there is clinical evidence or a precedent to follow then many cancers can get the 5 year ‘all clear’ or the at the end of this drug or that drug you will have beaten it. In my head however there isn’t an end date/time because nobody knows. If I sound like I’m dwelling in it, I’m not. Not at all. I’m cancer-free. But I find it terrifically hard when there’s a route or a pathway or a reference for other cancers and illnesses that determines an end or a route with markers on it. For something so rare, where there is no definitive ‘guide’, there are no answers. I may not be a scientist or mathematician but I like things to be solvable and there to be a reason and result. My favourite subjects at school (and subjects that I did well) were sciences, maths and even loved algebra! I think that’s where I struggle most… lack of reason and answers. Perhaps as more of us are diagnosed there will be more pressure for clinical trials, research, information and resources to be undertaken. As well as more data and reference points for ‘guides’ to be created. Perhaps my digging away at various different resources, speaking at cancer-related events, involvement in a number of different cancer networks, sarcoma groups, conferences and boards that maybe the word ‘Phyllodes’ will become a name that people start to think about…. perhaps. But I’d rather noone else had to join this exclusive group and be diagnosed!

GP

Posted on 07/09/2011 by AnnaGoAnna

My lovely GP called me in to see him today. I didn’t know why but presumed he may have received the results of my latest scans from the hospital and was just checking on me.

I’ve said before that my GP is the best in the world and I’m terrifically fortunate to have him as my GP. Sure enough he just wanted to take my blood pressure, blood test and generally check on me. We had our usual little chat. He was also able to take some blood for me to send off for a clinical trial that is being carried out into DCIS (you may remember they found one of those in me too!).

I was my usual bubbly self. As the appointment was coming to the end, he asked me ‘how I really was’. To which I gave my usual chirpy answer of OK and the mask was firmly on. As I left his room, he said he worries about me putting a brave front on and then said “Anna, YOU know what I mean. And you know where I am.” Barely made it out of the surgery before the tears fell. Thank God for my favourite place to put myself back together again… I headed to Berkeley Square and probably looked like a loony-tune sitting, staring and thinking!

Brighton with the champagne and shoe girls

Posted on 02/09/2011 by AnnaGoAnna

So very excited about today. I’m heading to Brighton for a day of chillaxing with the champagne and shoe girls.

I’ve met some fabulous people because I was diagnosed with cancer. Not all of them with the same cancer but so very many with a fabulously positive attitude. What is it about being faced with something life-changing, such as a cancer diagnosis, that makes us change our lives in so many other ways? I know that one thing I’ve been particularly conscious of, the need to surround myself with positive people. It’s not that I’m less tolerant or that I don’t have ‘negative’ friends but simply speaking, I need to draw from others the positivity and enthusiasm for life that is on offer.

It’s so much easier to feel better and do so much more when you’re around positive people. To encourage and enthuse one another to get to the next milestone and visual a future beyond. To plan to do things. To plot to do other things. To really take life and shake it up.

Today is one of those days and my friends are the perfect people to plot and plan with!

My three friends have all been diagnosed at young ages with ovarian cancer. Also known as the ‘silent killer’ as it’s rarely detected early enough to treat successfully.

Our day though doesn’t dwell on the end but merely a semi-colon in life. Yes we discuss treatments, chemo, surgery, health and concerns. We discuss things openly and we talk about it in the same way that many would talk about their children at school or organising a tea party – it’s just part of life and living. However we also talk about ‘normal’ things. We laugh at life. We choose to live.

During our day in Brighton, we had a picnic on the beach. It’s sunny, but not warm enough to remove our cardigans. We then head off to the Lanes and hop in and out of shops (mostly shoe shops). Kerry, Tish and I try on endless crazy shoes and boots. Della pops in and out of shops laughing AT us not WITH us and our choices of shoes. I leave clutching a big bag containing some new shoes and matching handbag…

Kerry leaves with two bags… shoes and boots!

But it’s not really about the shopping… it’s about doing something we love doing without feeling bad about it. Kerry is going into hospital again shortly. The cancer is back. She’s agreed to be part of a late phase clinical trial. We laugh that she may have to wear the shoes into hospital… hell why can’t we look absolutely fabulous in there?

We then head off to find a bar serving champagne for more plotting. Tish is thinking about going to Australia for a holiday and to see her sister. She’s concerned that she can’t get insurance to go and also a little nervous about being that far away. However she’s also stoic about doing what she wants to do. About living. We encourage her. Watch this space. Oooh and I know someone who because of her own experiences, has set up an insurance company specialising in travel insurance for people with long time conditions… www.insurancewith.com. I’m sure we can organise cover – not that she’ll need it!

We then talk about Kerry’s 40th birthday. It coming up in April. Kerry would love to have a big do. We plot.

By the time we leave the bar and head for trains home, we KNOW that there will be bubbles on Kerry’s 40th birthday. We also know that Tish will have to be back from Oz in order to celebrate!!

And I know I have some truly magnificent friends in my life.