Surprise Surprise – Sharon Fox Cancer Centre

Sharon warned us to keep tonight free.  A short while ago she then told us to be near a TV.  She couldn’t hide it from us for much longer as ITV started telling us about the new series of Surprise Surprise… hell yeah!  Finally Sharon had a surprise played on her!

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??????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????Sharon, through the Sharon Fox Cancer Centre, has played many ‘surprises’ on people.  Providing them with things that they dreamed of to do, have or be, during or after cancer treatment.  She’s even arranged an entire wedding in days for a lady with terminal cancer.

I said before in my entry in 2010 that Sharon is inspirational in her setting up Sharon Fox Cancer Centre.  Since then the Centre has grown, offering more services, running more support groups, moved premises (and is shortly to move again) and bought so much to the community of Tamworth.

Sharon herself has undergone further surgery, continues to remain positive about her own health and family but gives an extraordinary amount of time and effort to ensure that Sharon Fox Cancer Centre not only remains open but continues to thrive.

I’m so pleased she was honoured (& surprised) today and that she now has Michelle Mone as a mentor to help the Centre and Sharon move forward.

Oooh and the Dream Boys!

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Shine Fundraising Tea

As you know I belong to a support group for younger people diagnosed with cancer.  Shine Cancer Support was set up by cancer patients who realised they didn’t quite fit into the ‘norm’.  The organisation has groups through England (more all the time) who meet up regularly.  The London group meets every month, usually in a pub or a bar.  We talk about our experiences sometimes, we share what we have learnt and sometimes we don’t mention cancer at all but simply talk about getting on with life.  It’s not like many groups where you may sit around a circle and discuss problems.  More like a group of friends with a common interest.

Today was a fundraising afternoon tea in order to raise funds to keep the group going.  We don’t have huge costs but the charity likes to pay for the first drink so that anyone affected by cancer in their 20s, 30s or 40s can pop along for a drink with some new friends.

Great afternoon.  A few introductory stories from Ceinwen and Richard.  Fun entertainment.  Always fun to catch up with my Shine friends.  Hopefully raised lots of money too… if we have more than enough for the London group, the excess will go toward other groups being set up or a retreat that is hoped to happen next year.

Shine Fundraising Tea 08/09/13

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

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!

IMG_3998Having 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

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

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.

International Clinical Trials Day

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!

Penny Brohn Approach course

The Living Well course that I attended in December was really wonderful. I can recall driving to it (from Tish’s funeral) in quite a state but driving back home after the course feeling ready to take on the world, start a new chapter and with many positive actions to implement… sadly these were crushed when I discovered that I’d been burgled.

I wanted to capitalise on the benefits of the Living Well retreat. I was aware that despite my best efforts I’d not truly been able to implement all the actions I’d intended since I was still shocked and ‘disturbed’ from the burglary. I booked up a 4 day retreat, The Approach, in Bristol and hoped that this would recharge my soul and spirit again.

As always, I went alone. Penny Brohn do allow you to take a partner, companion or friend with you. In some instances I’m sure it is pivotal to the best results for you. Sometimes we’re all very good at putting on a brave face or ‘coping’ and perhaps don’t say what we’re really thinking for fear of upsetting someone close. Certainly over the 4 days I was to see some changes in individuals and their partners but also importantly in their relationships and understanding. I have always been acutely aware that a cancer diagnosis affects many more than just the person diagnosed. Often in places and people you wouldn’t expect. How does a colleague feel about sitting opposite an empty desk whilst your in treatment or away for hospital visits? Perhaps a neighbour who doesn’t know what’s going on or wants to help but doesn’t know how. Your parents, children, siblings etc with whom often you bravely say ‘I’m fine’ when really you’re neither fine nor are they ‘allowed’ to show their own emotions and concerns. It truly is a much more complex picture than we given credit to.

I was anxious when I arrived at the Centre. Unsure what the week really held for me. What emotions and feelings would arise. Would I be able to open up when needed – I know I’m often a closed book to my own emotions and tend to hide my real feelings behind humour. Who were the other people on the course?  Would we get on?

I really needn’t have been anxious at all.

OK it was tough at times but hey, isn’t life tough sometimes?
OK so there were places in my head that I didn’t want to go or recall but don’t we do that anyway when we’re brave enough?

For many reasons, not least the confidentiality of the other people at the retreat, I won’t go into the detail. However I’d like to give you an outline of the week.

The days were broken into many different aspects. We did some exercise; imagery; relaxation; meditation; group work whereby we were encouraged to talk about our experiences, concerns and worries; nutrition lessons; one-2-one sessions with a GP; one-2-one session with a nutritionalist; one-2-one session with a healer; went for walks; small group sessions so that ‘partners/friends’ were given the opportunity to speak freely about their concerns away from their partner/friend.

The programme is busy but varied thereby allowing time to reflect on earlier sessions.

In the evenings we were exhausted. I sleep so well in my Penny Brohn hotel… it truly is luxurious too. But on a couple of evenings there were optional things to do. One was to have a short meeting/chat with Pat Pilkington, one of the founders of the centre. She told us her story. She spoke of her meeting Penny Brohn and their friendship. She spoke of her husband who has passed away but clearly she adored, loved and was/is utterly devoted to. An incredible lady who despite being of a ‘certain age’ was keen to let us know that we could contact her at any time by email and she would respond within 3 days to each and everyone of us. Such a generous lady… of her time, her love and her experiences.

Another evening there was a Biodanza class organised for us. No ordinary dance class and we needed to keep any inhibitions at the door! Not my kind of thing but I tried to enter into the spirit. Lots of people did. Some stayed firmly seated on the sofas. But for a short while we were all up and dancing. I think the teacher wanted us to be mindful i.e. quiet and reflective… however because of the wonderful sense of humour and vivacity in the group there were bursts of laughter through the lesson 😉

Healthy eating meals together at breakfast, lunch and dinner. During which time we all had plenty of opportunity to talk and get to know one another. What an amazing group of people with so many life experiences before cancer diagnosis, experiences due to a cancer diagnosis and an incredible amount of positive aspirations and dreams for a future. By the end of the week I felt blessed to have some new firm friends in my life.

Phyllodes Support Group

One of the things I don’t often blog about in great detail is our patient-led Facebook group, “Phyllodes Support Group“.  You will recall from the beginning of my journey (still don’t like that word but haven’t come up with a better one yet!) that I found myself feeling alone and isolated with a diagnosis of Phyllodes.

I remember the fear when I was told that there is no/little information available for patients; no completed clinical trials or reliable data; no ‘specialists’ in the World and a varying degree of myth and misunderstanding on the Internet.

Our Facebook group has now been ‘found’ by over 500 members and grows almost every day.  We’re from around the World and have differing ‘success’ with medical teams knowing about Phyllodes, the treatment and outcomes.  So our group, I believe, has been critical to each and every member.  We share experiences, information and resources.  We ‘hold each others hands’ at times of anxiety and worry.  We have created a database of all the journals and papers ever written about Phyllodes.  We run polls of our members to find out the age of diagnosis, the prevalence of benign, borderline or malignant and much more.

We also have a poll that asks members where in the World they are from.  This poll has allowed us to be more specific with some information and support by sharing local ‘sarcoma protocols’ or similar.

There are 4 administrators/moderators of the group.  We live in different parts of the US, Italy and me in the United Kingdom.  For my part I try to befriend the members from the UK and share with them more local information that may be useful.

Today was no different.  I’ve been speaking with a new member of the group who was dissatisfied with her local hospital.  They had said they knew it was Phyllodes and how they were going to treat it – ‘watch and wait’ – despite it growing rapidly.  It was suggested that she get a referral to the Royal Marsden for a second opinion.

This morning I met up with her and her husband at the RMH before their appointment.  Inevitably there were a heap of questions they both had before their appointment (and ones they’d not wanted to ask in the group).  I hope my company was of value and comfort to them both.

I know I would have loved to have found just one other person with Phyllodes in the UK that I could speak to when I was diagnosed.

Penny Brohn Living Well course

Tish and I had intended to go together to a Living Well course at the Penny Brohn Centre in Bristol. However after much discussion and before booking we decided that we should in fact go separately to get the most from the retreat. Tish chose to take a wonderful friend of hers, Marie, as her companion and went to an earlier retreat.  Thank heavens as she truly felt it made a huge difference to her final months.

Tish urged me to book myself onto the Living Well course and suggested the course starting today.  I can’t help but know she knew that the timing was important. All day at her funeral I think knowing that I was going to be attending the course in a few hours got me through.  I knew they’d understand.  However I think I cried the entire length of the M4 and only managed to stop crying when I hit the outskirts of Bristol.

As soon as I walked into the Centre, I ran into Michael Connors, Director of Services.  I’ve met Michael a number of times before when I’ve been doing things with Living Beyond Diagnosis.  It was at least a minute after he asked me how I was, that I shed a tear again.  Michael was fabulous and reminded me that I was on the Living Well retreat for ME not as an advocate or on behalf of Living Beyond Diagnosis.  I needed to hear that at that point too.  Thank you Michael.

The Living Well course is an introductory course which aims to provide a tool kit of tried and tested techniques that can help you support your physical, emotional and spiritual health.

The Living Well course encourages you to explore the meaning of cancer in your life with people who understand the impact of the journey. Share your experience with others in similar situations, and think about what steps you could take now to help you live well.  During the residential course there is a wonderfully designed programme with group sessions including information, healthy eating, exercise, understanding the impact of cancer on emotions and relationships and sharing practical tips.

The facilitators use different methods of relaxation, meditation, mindfulness and imagery during the stay and also explain more about the science and research behind the approach.

The Centre is incredibly comfortable with rooms equivalent to any great hotel.  The days are emotional and challenging so despite our early bedtimes, we slept extraordinarily well.

I shared the experience with 10 others.  Both men and women.  Some with partners  and others with friends as companions.  There is also good representation of age and different cancer types and stages of diagnosis.

I came away with a mind full of plans for a future as well as a restocking of my ‘toolbelt for life’ with new and resharpened tools.  I felt lighter than I have for quite some time.  More positive.  Perhaps able to work through some anxieties and concerns.  In addition to this, I was also delighted to have made some wonderful new friends and to have received and given such heartfelt farewell hugs.

Launch of Penny Brohn’s National ‘Living Well’ courses

A few months ago I was invited to write a small piece to appear in the Sunday Telegraph. The focus was to be nutritional information following a cancer diagnosis.  A hot topic and one that can be confusing.

Specific nutritional advice should, of course, be sought from your medical teams and indeed is tailored to each person and their specific cancer diagnosis.  For example advice given to a bowel cancer survivor would be different to that given to a lymphoma survivor, at least in part.  In addition, some treatments and particularly some chemotherapy drugs are extremely sensitive to some foods and incorrect advice could be very damaging.

My piece therefore was written on the basis of an overview and enabled me to signpost to some smaller specialist charities and also to organisations that offer nutritional workshops for cancer survivors.  Often these smaller organisations don’t have large media or marketing budgets and rely on word of mouth referrals or editorial similar to that which I was asked to write.  The submitted piece with links is below:

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Submitted to the Telegraph:

As a cancer patient diagnosed with a rare soft tissue sarcoma, Phyllodes, in 2009, I am always seeking information and guidance with regard to lifestyle, health and wellbeing. There is often information that appears to contradictory or conflicting in the media and also an overwhelming amount of ‘advice’ from well meaning friends, colleagues and acquaintances. What I have learnt with regard to balancing and increasing my intake of fruit and vegetables is actually quite simple.

· The well known guidance of ‘5 a day’ is a good place to start.
· Divide your plate into imaginary slices so that 50% of the meal is fruit and vegetables.
· Balance the colour of fruit and vegetables you eat. If, for nothing else, it looks more attractive to eat and means you get less ‘bored’ with the healthier choice.
· Experiment and try new fruits and vegetables. Even the ‘oddest’ looking vegetable can taste scrummy and be good for you!
· Snack on fruit (strategically placed fruit bowls help with this).
· When chopping up vegetables for dinner, julienne an extra carrot, celery, pepper or similar. Pop them into a small foodbag. You can then take this out with you or have in the fridge ready for those ‘picking’ moments.

In my role as moderator for a Phyllodes Support Group and also my work with Living Beyond Diagnosis, I am often asked for advice regarding healthy eating or lifestyle choices. I know from conversation with others diagnosed with different cancers and at different stages of treatment or wellness, that some fruits and vegetables can have different effects on the person and therefore professional advice should be sought together with a sensible approach. I am cautious about giving any specific nutrition advice as I’m not qualified to do so but I signpost them to specific charities and organizations specializing in their cancer type and urge them to speak with their oncology consultant and/or cancer care specialist.

There are some fantastic charities and organisations offering dietary information online, nutrition workshops and even cookery classes. Why not make the discovery and incorporation of new fruits and vegetables fun and easy?

NHS Choices has a number of links to healthier eating. They also have a link to 5 a day on a budget.

The Teenage Cancer Trust  make the point ‘Young people with cancer often face rare and difficult to treat disease that requires aggressive chemotherapy and radiotherapy. Being as fit as they can and eating well is critical to helping them fight both the disease and the debilitating treatment. This can be particularly challenging with side effects like severe mouth ulcers, nausea and changes to taste and appetite. It is vital that health services focus on nutrition during treatment and research foods that can add value in a young persons fight against cancer’.  Simon Davies, CEO, Teenage Cancer Trust

The Haven, a national breast cancer charity, provides centres which offer free emotional support and healthy lifestyle advice to anyone before, during or after, breast cancer treatment. Their professional team include experts in nutrition, counselling, exercise and mindfulness to help anyone with and beyond breast cancer. Their research has proven the benefits of its in-depth programme.

The charity provides a healthy eating guide as well as DVDs and CDs to help people who can’t get to one of their centres.

Maggie’s Cancer Caring Centres  offer free comprehensive support for anyone affected by cancer. In addition to the many support groups, emotional and psychological support, benefits advice and practical support, they also run Nutrition Workshops.

The sessions are aimed to promote a healthy, balanced and varied diet and comprise in an informal setting:

  • The importance of good nutrition to overall well-being
  • An overview of what is a healthy diet
  • The role of antioxidants, phytochemicals and essential fatty acids in the prevention and protection from cancer
  • Making the most of the diet in simple and easy to achieve ways

Many people who come to the workshops may have read books on nutrition or sourced information from the internet and the sessions can help to clarify what people have discovered, plus they are an opportunity to explore and share.

Beating Bowel Cancer  have produced a booklet entitled Living With Bowel Cancer: Eating Well which can be downloaded. The booklet outlines dietary advice specifically for bowel cancer patients following treatment or surgery.

Advice is also available via their specialist nurse helpline 08450 719301.

Penny Brohn Cancer Centre provides a unique combination of physical, emotional and spiritual support designed to help anyone affected by cancer at any stage of their illness. Information and advice on healthy eating is one of the many services we offer to support people to live well with the impact of cancer.

Our range of services, which are available to cancer patients and their supporters, include one to one sessions with a qualified Nutritional Therapist, residential courses and a choice of one day courses covering; healthy cooking options and demonstrations, menu planning, how to combine and cook foods and the theory and science behind our guidelines.

Penny Brohn have also produced a guide to maintain a healthy, balanced diet whilst living with cancer “The Bristol Approach to Healthy Eating

Further information can be found at www.pennybrohncancercare.org/eating-well

Anna Wallace
http://www.annawallace.co.uk
Founder of Living Beyond Diagnosis

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During my research and conversations with Penny Brohn Cancer Care for the Telegraph piece, I was told about a very exciting development in their programmes.  I was aware of the residential courses in Bristol from friends who have benefitted hugely from attending.  The new news is that they were launching their ‘Living Well’ programme nationally later this year.  It’s been hard not to tell you all before now, such wonderful news.

Tonight, I was honoured to have been invited to attend the launch at a reception hosted by The Rt Hon Dr Liam Fox MP at the Houses of Parliament and hear in full about the exciting project.

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What does Penny Brohn Cancer Care do?

Penny Brohn Cancer Care supports people living with the impact of cancer through our unique combination of physical, emotional and spiritual support.  This is designed to support the individual and work alongside their medical treatment.

We provide our services free of charge, thanks entirely to the charitable donationsl and voluntary contributions which fund our work.

Our services are open to everybody over the age of 18 with a cancer diagnosis and their supporters.

For information and support contact our Helpline on 0845 1232310 or email helpline@pennybrohn.org or visit http://www.pennybrohncancercare.org.

What is ‘Living Well’?

Led by experienced, trained facilitators, Penny Brohn Cancer Care’s Living Well course provides people with a tool kit of techniques that can help support physical, emotional and spiritual health.

Information is provided on healthy eating, exercise and understanding the impact of cancer on emotions and relationships.  In addition participants experience different methods of stress management.

People are encouraged to share their experiences with others in similar situations, and think about what future steps they could take to “live well”.

The Living Well course is part of a wider pathway of care at Penny Brohn Cancer Care.  This approach includes ongoing support and other courses are available.

How is ‘Living Well’ delivered?

We have a choice of delivery models:

  1. Partnership with NHS cancer services
  2. Partnership with charitable and independent organisations
  3. Delivery as an independent course

Living Well can be delivered in both residential and non-residential formats and can be tailored to the needs of individual client groups.

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Over the past years Penny Brohn have been refining the programme to ensure the content is current, required and flexible to the needs of those attending.

Penny Brohn have created the Living Well programme taking a holistic view of treating the whole person.  Supporting people living with the impact of cancer through a combination of physical, emotional and spiritual support.  They have conducted extensive (and continued) research and evaluations of attendees and supporters from attendance to date to see assess the impact and value of each aspect of the course.  This research and evaluations allow them to continue to support the individuals after attending the courses by keeping the dialogue open and a way to come back for further support or attend courses.

I have been truly encouraged by their approach that the impact of cancer can affect people at different times and in different ways.  I’m also encouraged that this is not only on the ‘heresay’ of a cancer patient but on substantiated research.  We hear a great deal about ‘survivorship’ but often this isn’t backed up with real hard evidence and research.  I’m concerned that when more budget cuts are made within NHS healthcare that cuts will be made in areas without substantiated research underpinning it.  Well done Penny Brohn and the University of Westminster for this continued research and evaluation of need.

I was also excited to hear that as a charity they wanted to share their expertise and work collaboratively with other charities to host Living Well courses around the UK.  Instead of setting up new Penny Brohn Cancer Care centres themselves, costing millions and then servicing people local to their new Centres, they acknowledged that by working with other organisations they can not only reach more people but can also educate and inform of the need for survivorship support of this kind.

In attendance tonight were a large number of representatives from other charities who, I’m pleased to say, seemed agreeable to working WITH Penny Brohn in the national launch of Living Well.

Already organised are a number of regional non-residential courses:

26-28 Nov 2012    National Star College     Cheltenham
3-5 Dec 2012        Willow Lodge      Sheffield
21-23 Jan 2013    The Octagon     Hull
21&28 Jan 2013    Norman Power Centre     Birmingham
4 Feb -18 Mar 2013   Cancerwise    Chichester
5-7 Feb 2013        Penny Brohn Cancer Care   Bristol
18-20 Feb 2013    Great Oaks Hospice    Forest of Dean
19-21 Feb 2013    The Octagon     Hull

Perhaps you know someone who might benefit from attending one of these non-residential courses or indeed a course in Bristol at their HQ.

Perhaps you know an organisation/charity that could co-host a course.

Perhaps you could fundraise for them or propose a corporate donation to your employer.  They run these courses free of charge with voluntary donations.

A link to the BBC news about the launch and services – click here