Patients’ Perspectives

This page on our website is where we invite key people to share the insights and knowledge that can help us as we as we manage our well being. It is our hope that many of those we interview will sign up to our HealthUnlocked site and be a ready resource for members of Hunts Community Cancer Network (HCCN).

Your very own news hound will seek out people you might find interesting and helpful and encourage them to answer our questions.

Please keep coming back to this page as we will post new interviews monthly and feel free to contact us at virginiamelesi@nhs.net with your suggestions for topics to explore or people to interview. Remember authoritative information is vital as you seek to play your part in managing your health.

Flora makes the link

Working together for the benefit of patients is very important to all the people who work at Hinchingbrooke hospital. However sometimes we forget that what is completely obvious to us is not so clear to the people we care for. Where does one team stop and another take over? Am I allowed to approach two teams or more at the same time?

The community cancer nursing team is there for you throughout your treatment and beyond. Our commitment is to enable and empower you to play a full part in managing your health during treatment and beyond and so when Flora said she thought it would help some people with breast cancer to be able to access the breast care team’s information from our website I was only to happy to yes. It is excellent information. I know you will find it useful.

Gini.

Flora says.

I’d like to welcome you to these pages.  I represent patients on Breast Cancer Now’s Service Pledge for Breast Cancer who noted that patients wanted better access to information.  Breast Cancer patients at Hinchingbrooke are fortunate to be advised and supported both by the Hunts Community Cancer Nursing team and the Breast Care Team.  I know, that as a patient, it was not always evident where I could get the information I wanted and which team could meet my needs at a particular time.   So when HCCN offered to host the Breast Care information here, it seemed a good way to make clearer the complementary activities of both teams.  So here it is.

I’ve had three episodes of cancer over the years and I know information and support was key in helping me cope at this crucial time.  I had breast cancer 30 years ago, a lumpectomy and radiotherapy. I had non-Hodgkin’s lymphoma treated with chemo and radiotherapy 20 years later, and last year a mastectomy followed by chemotherapy.  Happily, I’m through it and enjoying my life pretty much as I want it.

What a change in the support available today!  I’ve found the specialist care at Hinchingbrooke second to none and it’s made such a difference to me and my family this time round. Thirty years ago there were no specialist breast care nurses and certainly no HCCN!  The wrap-around menu of advice, support and activities they offer certainly got me going again.  I meditated, did Pilates and made new friends. I even tried alternative therapies some of which were blissful, especially going through what seemed like carnage at the time.

The breast care team, especially Lorraine and Mel, are wonderfully supportive.  They’re thoroughly professional but always very approachable. Throughout my treatment they were not only reassuring but knowledgeable and quick to respond – and still are when I have a concern.   At the time, the pink folder was my main reference and it’s this info that we’ve put on line for you. We hope you find it useful to be able to access the information on your breast cancer treatment and care at any time wherever you are.

Flora.

CLICK HERE to download the Breast Cancer Patient Resource Pack

Gini Melesi Interview

Gini Melesi, December 2015

Gini Melesi, December 2015

Gini thank you for taking the time to be our second interviewee. We all know how hard you work so it’s good to have caught you for a quick chat over a well earned coffee.

Gini you  created Hunts Community Cancer Network so in your own words tell us what it exists to achieve.

The project started from an initiative with NHS England because there was a recognised gap that existed when people came to an end of their cancer treatment. The ‘original’ Macmillan cancer nurse now looks after all people who are dying with or without cancer. They are now more focused on symptom control at end of life and the notion people have of a Macmillan nurse ‘holding their hand’ from diagnosis really does not exist.

On our first day three of us sat in an office with a completely blank canvas and very little direction.

There is a new wave of evidence and ‘buzz words ‘such as the ‘consequences of cancer treatment’, ‘living with cancer’ and ‘survivorship’.

These are very real and important things and need addressing but alone they would never get the service commissioned at the end of the pilot.  In these lean times commissioning needs us to show that we can at least pay for our costs and preferably save money.

We achieved this. By working more closely with patients, supporting them through their diagnosis & treatment , picking up issues earlier, recognising complications and even doing certain treatments and procedures out of hospital we achieved so much more; we proved that we could save the commissioners the money that they spend on us, we kept more contact with the patients so that they felt more supported, we followed them through once their treatment finished and supported them through this scary time making sure they know what’s normal & not normal and where to go if they have concerns. We educate them about the latest evidence on lifestyle & its effect on cancer recurrence. Mostly we seek to empower patients so they understand and they question and they feel they have control.

I know people sometimes struggle to understand where services fit so would you explain who funds you, and your relationship with local doctors and Hinchingbrooke hospital.

Whilst we are based in the hospital we are presently funded by Primary care / community commissioning. Hinchingbrooke ‘host’ us and did add a little extra funding, as did NHS England to ensure that we could keep the service running for a further year to gather more statistics around the difference we could make in cancer care .

The most brilliant thing about this is that we take the walls of the hospital down and can offer a seamless service.

We can see people on the wards, at home, meet them having treatment in the Woodlands. We will attend an outpatient appointment, meet them in coffee shops or we even see people in their place of work if this means they can carry on with a level of normality.

This enables us to do so much more. Communication is notoriously bad within any large organisation. By being truly peripatetic we can track down consultants, GPs, specialist nurses. This enables us to improve communication, get questions answered, even fast track procedures and coordinate care more effectively.

How would define your typical patient, do they have to be a certain age have specific cancers?

We see anyone over 18 with any cancer where ever they are treated. Our only limitation is that they belong to one of the GP surgeries that we cover. Which is most as we serve 23 surgeries within Huntingdonshire.

In your own words what value does home nursing offer patients over the current system.

For the commissioners it saves money

For the hospital it frees up bed space and out-patient appointments, enabling new patients to be seen sooner

But, for the patient it can offer so much more.  Cancer & cancer treatment can be very tiring and time consuming. Seeing people at home can obviously limit these problems.

We can be more flexible around school runs and work commitments.

We can have much more meaningful time with patients out of the hospital often enabling us to support patients in many more ways and often unearth needs that might otherwise have gone unmet.

Sometimes outpatient appointments can truly be a waste of time. Mostly because they are at the wrong time! Problems arise before and then people wait or after and then its too late. Increasingly we are offering self-managed aftercare. WE educate patients what to be aware of and they have our mobile contact numbers so whenever a problem arises they can call us. We will visit, assess, arrange tests and fast track them back to their consultant where needed.

We see your team and the area you cover growing so would you share your long term vision with us. When HCCN works exactly as you want it to what will it be doing?

WE want to be a central point of referral. My vision is for all newly diagnosed patients to be referred to us. WE want to be the main point of contact and for us to then navigate the patient and the people important to them through what must be a terrifying experience with such a feeling of loss of control. People need to have answers quickly and to know that they are being listened to.

We want to do more treatments at home or closer to home. I would like to grow a band of volunteer patient ‘experts’.

I would like to offer more educational events to empower people

My want list could actually go on for as long as my kids Christmas present lists!

A lot of people tell us that they are confused about the charity’s role can you clear this up by telling us how you see it working.

Without the charity we would not be in the position we are in today.

The money that the charity has raised is what has set us apart from other similar projects because we can do so much more that the NHS simply can’t support no matter how important it is.

There is so much evidence to show the importance of diet & exercise significantly reducing cancer recurrence rates but the NHS cannot fund these supportive activities and the Gym is not the right place for people who are having or have been through aggressive treatments. The charity funds our equipment & fantastic personal trainer.

It funds meditation & Yoga classes.  Again there is increasing evidence to support the effect of these activities on the person with cancer.

At a time when we might not have continued with the service it paid for 2 months nurses salaries and provided equipment for the new nurses.

Empowering & educating our patients is key to their being able to manage their cancer. Our post treatment workshops and the expert speakers at our conferences would also not be possible.

Its further looking to fund equipment that we need to be able to do more complex treatments at home that will improve patients’ quality of life.

I could go on but it would too look much like a list of presents.

I can see you looking at your watch and your phone has been pinging away throughout the interview. So to end is there anything else we should know?

I just love this job and what it enables me to do to make peoples lives even just a little bit less stressful. I love pushing boundaries. And I hate the word No!

Thank you for your time.

Please note the content of this interview expresses those views and opinions of the interviewee only and should be accepted as such.

Claire Baker Interview

Claire Baker, October 2015

Claire Baker, October 2015

Hello Claire and thank you for agreeing to be our very first interviewee.
Tell us a bit about yourself and what you are doing now.

Hi Susan, I’m delighted to be your first interviewee. Thank you for inviting me. I’ve worked in HR for the majority of my career, in a number of roles – and for my current employer for 15 years. During this time, I have been diagnosed and treated for cancer twice. In May 2008, at the age of 34, I was diagnosed with Hodgkins Lymphoma and underwent surgery, chemo and radiotherapy.

A couple of years went by and I was starting to feel more confident about my health. My hair had started to resemble the long locks I’d had before chemo and I was enjoying life again. But in October 2012, after finding a lump, I was diagnosed with an unrelated breast cancer and had surgery, radiotherapy and 2 years of hormone treatment.

Although these were both cancers, for each I had different symptoms, treatments and experiences. However, there were also a number of similarities. One of the main ones was that returning to work was another momentous hurdle that I had to overcome.

When we were chatting you said that you had gained some strong insights into the issues associated with returning to work after your diagnosis and at the same time an understanding of the perspectives of being an employee and an employer. 

The fight against cancer is said to be one of the toughest that individuals may have to endure. Getting back to work is huge part of getting life back on track. But for many cancer patients, myself included, the reality of returning to and maintaining a presence at work can be difficult.

Treatments for cancer go far beyond chemotherapy and radiotherapy.  Side effects from these typical treatments, as well as from other drugs regimes combined with any physical changes as a result of surgery and/or treatment, means that the employee’s relationship with cancer continues for years after diagnosis.  This is frequently not appreciated even by the patient – let alone their employers.

Organisations, especially line managers, can have a significant impact on the success of a patient’s return to the physical work place, as well as how quickly the employee settles back into work, their job role and their team.

So you took a pretty big life experience coupled with a lot of expertise and decided what? How are you looking to use your experiences?

Whilst the road to diagnosis and treatment has significant structure, the road back from treatment is unclear, less structured, confusing, often extremely difficult and isolating.

On my return to work in 2013, I started to investigate what resources were available to support me in returning to work. I soon realised that there was very little in terms of discussion in the HR press about returning to work after cancer, and how organisations should be supporting their employees.

There seem to be support and discussion groups for many of life’s events. But I struggled to find any helpful debate or support networks that would facilitate my return to work as a patient, or that would equip my line manager to support me.

Although I was offered counselling for my diagnosis, it wasn’t this that I was looking for. After much thought I worked out that what I actually needed was a sounding board, someone to chat to, to share ideas and how I was feeling about returning to and once back in work.

After talking to a number of my fellow patients, I was aware that I wasn’t alone in feeling that there was a gap in resources, knowledge and debate. So I decided that I wanted to help others in a similar situation. I’m currently thinking through and developing some exciting ideas as to how best to do this.

How do you see yourself helping others?

The aim is to use my HR knowledge and experience and my encounters with cancer to benefit patients and enable them to make a successful return to work. I want to provide patients with a secure forum in which they can share their experiences, highs and lows, and difficulties of their return to work.

I am also helping organisations to understand how they can best support and facilitate this return by improving their support, management and understanding of cancer in the work place.

How can you help with our community on Health Unlocked?

I am delighted to help the Health Unlocked community by answering or helping with any issues in regard to cancer in the work place. Typical questions or comments that I often hear are: what should I do if my performance rating is changed as a result of my absence? My employer hasn’t made any adjustments to my performance targets to take account of my recent illness – is this right? My line manager is avoiding talking to me about my return to work and what support I might need.

I can help with these and many other related questions. I am also looking forward to sharing more details of other exciting ideas that I am developing to help others returning to work after a cancer diagnosis.

Thank you for your time Claire. We are very grateful that you have taken the time to talk to us today but more importantly that you have signed up to our HealthUnlocked site to be a resource for our members. We have been told more than once of difficulties people have faced when returning to the workplace and to know there is someone for our members to talk to who has an HR background could really help. Thank you again and please come back to talk to us when your exciting ideas have developed further.

The Emotional Side Effects of chemotherapyWas I imagining it???

Linda shows us there is life after chemotherapy

Linda, April 2015

I have just completed 6 cycles of FEC- T chemotherapy for breast cancer. Many of you will have been through this treatment, either prior to, or following surgery or are going through it now.

I have been shocked at the intensity of the side effects, especially the Docetaxol (T). Despite the plethora of information on the internet and of course the very informative ‘New Patient Clinic’ it still came as shock.
I had the advantage (if you can call it that!) of having been a chemotherapy nurse in the Woodlands for several years from 1998. I had sat with patients explaining the effects of chemotherapy and listening to them tell of their experiences.
It is because I have experienced things from both sides that I have decided to put my thoughts into print.

I realise not everyone has the same experience, with the side effects being more severe in some people than others.
I was very lucky as I did not suffer with vomiting and had very little nausea.
I was prepared for most of the side effects but not the psychological/emotional one.
I will try and explain how it affected me personally.
Whilst having the FEC, I coped quite well, just getting progressively more fatigued. But on a couple of occasions I became very irritable and suddenly angry ‘about something’! Not about anything in particular, not even a conscious thought concerning the cancer diagnosis and being angry about that. That would be understandable.

The noticeable and biggest change came with the ‘T’. Maybe the larger dose of steroids and subsequent withdrawal may have contributed to its effect. I have attempted to list all the emotions that engulfed me. Some of them seem far-fetched and ridiculous but here goes!

  • ‘Going mad’
  • Restlessness and feeling that I could scream
  • Unkind , unjust thoughts about people who care about me
  • Being in a ‘bubble’ : the world going on around me with me as a bystander
  • Unable to reason with myself or get any perspective on a future
  • Heightened awareness of emotions
  • Uncontrollable crying
  • Inability to function at any level
  • Difficulty communicating
  • Not wanting to communicate

Whilst experiencing all of this I did feel very unwell but cannot be more specific than that. The awful fatigue, I am sure has contributed to all the above. I could feel ‘it’ approaching and it would last only a couple of days when the steroids had finished. When it had gone I felt like a dark cloud had been lifted off me despite the fact that I still have surgery, results etc to go through. Sometimes it would return later in the cycle but only for a very short time and not with the same intensity.
I know that due to the nature of what is going on in our lives and the treatment we all feel emotional, frightened and very unwell at times but somehow this felt different in its acute nature and intensity.
Those that care for and live with us might also benefit from the knowledge that these emotions are a ‘normal’ side effect and will pass.
The phenomena of ‘chemo brain’ is now well documented and recognised by the medical profession but only in recent years.

I am wondering if others have had the same experience and if so patients should be informed? I feel I would have dealt with it better if I had been informed (forewarned?!).

On a positive note I have found the meditation that is provided by The Huntingdon Community Cancer Network of huge benefit, along with Reiki treatment I have been receiving privately from a highly qualified, very experienced Reiki Master.
I can now meditate alone which is of course is in the end the whole purpose. Both therapies have helped to calm me, given me strategies for dealing with sad and negative thoughts, in addition to giving me a realistic perspective on life.

I have always been an active person, walking and horse riding being my hobbies. So the philosophy advocated by Prof. Thomas and the HCCN of the benefit that exercise can have on improving prognosis and well-being comes as no surprise!

Yesterday, 2 weeks after my final chemotherapy, I walked about 4 miles, pushing an empty wheelchair and with a rest for tea and cake! The wheelchair was in case I needed it as my sister and I had a set ourselves a goal. She is fit and would have pushed me but I didn’t need her to! I was euphoric!
Although tired today I have been in the garden and planted some bulbs and whilst writing this am enjoying a glass of red wine! So there is life after chemotherapy.

I would be very pleased to hear from anyone who would like to make any comments about this aspect of chemotherapy.
You can contact me at: linda.kelly@icloud.com

Good luck to you all, wherever you on this journey,

Linda

Cancer sufferer tells her story to help others

Anita Higgs

Anita Higgs April 2014

Anita Higgs was 37 and married with a two-year-old daughter when her battle with cancer began. COLLETTE NICHOLLS discovers that while her ‘cancer journey’ has been tough, it has not stopped her from embracing her new normal life.

The Woodlands Centre has become a familiar place to Anita Higgs. It was in Manchester nine years ago that she was diagnosed with breast cancer and where, as she describes it, her cancer journey began.

She underwent a lumpectomy, lymph node removal, mastectomy, eight rounds of chemotherapy, and a month of radiotherapy.

Breast reconstruction followed using muscle from her back.

Anita, an estate agent at the time, was put on tamoxifen for five years, had regular check-ups, put it all behind her and went back to living a normal life.

Two years into her cancer journey her marriage broke down and ended in divorce.

“Having cancer and going through the treatment can put a huge strain on any relationship. It can either make it stronger or break it,” said Anita, who now lives in Great Stukeley.

To help her cope, she did the 26.2-mile London breast cancer Moonwalk with her sisters Laura and Sarah and friends.

Happily living as a single mum, she returned to work and found a new partner, John – the only ­problem was he lived in Huntingdon and she was in Manchester.

She ran a Race for Life to ­celebrate her five-year clear mark.

But, in 2011, she started getting back pain. Initially, she put it down to landing awkwardly after going down a waterslide with her ­daughter, Charlotte.

The pain increased and she had an MRI scan. The next day she was asked to be at the doctors in half-an-hour.

She was told secondary breast cancer had spread to her spine and part of her spine had collapsed. She was admitted to hospital and had surgery to prevent more damage to her spine. More scans revealed a small nodule on her lungs.

Anita spent five weeks in hospital, had two rods and eight screws fitted to her spine, was put on tamoxifen and had zometa administered via an infusion drip every four weeks.

She returned to work part-time, her back was healing well, and she could walk without crutches. But when she went for her three-month CT scan, she was shocked to find the cancer had spread to her hip – an urgent hip replacement was needed.

“I thought ‘How much more can I take?’ Somehow, I carried on. I was on crutches again, had more ­radiotherapy and my treatment plan changed.”

The cancer remained stable and even reduced in her lungs, but 12 months later a scan showed further progression in Anita’s bones, lungs and liver.

“This time when I walked out of hospital I knew I could no longer carry on as normal. It was pouring with rain and I couldn’t stop crying. John said ‘You are no longer doing this on your own, one of us needs to move’.

“I’d given up on all my dreams, I never planned anything as I was too scared I would have to cancel if I was ill.

“I knew I no longer wanted to live in fear of my cancer.”

Anita decided to move to Huntingdon to live with John and achieved it, including getting Charlotte into school, within five weeks.

“I got my treatment transferred to the wonderful Woodlands Centre and with the amazing support of community nurse specialist Gini Melesi, Dr Cheryl Palmer and the nurses I’m doing really well.”

Anita takes chemo tablets twice a day for two weeks, with one week off, with very few side effects. Her last three CT scans have shown the cancer is stable in the bones. There is no sign of it in the liver and lungs.

“I still have the awful dread of the CT scans. As soon as I have the scan I’m anxious until I get the results. I live my life three months at a time, but the difference is now I do live and try to enjoy every moment.”

She plans lots of things to do and this year enjoyed holidays in Cyprus and Portugal. “I really enjoy ­spending time with my daughter, time in Poole with my family and having my partner with me at night, when I can’t sleep.”

For her birthday in July and to celebrate being two years on from having secondary cancer, Anita did a 10-mile charity walk around Grafham Water, raising £1,700 towards the Woodlands extension.

She swims two or three times a week, walks a lot, eats healthily but still enjoys a glass of wine at weekends.

While coming to terms with her cancer, a friend bought Anita a plaque saying ‘Go confidently in the direction of your dreams – Live the life you’ve imagined’.

“I’m a strong believer in a positive attitude as this helps me cope with living with cancer.

“My advice to people is to try to embrace their new normal life. You’re not going to go back to the way life was, some things are definitely going to change.

“Accept that and you will be much more comfortable with what you’ve had to go through and how you live your life now.”

Anita’s message is simple – try not to let cancer hold you back but go confidently in the direction of your dreams.

Inspiring Images and Documents

she adjusted her sails

she adjusted her sails

Inspiring Videos

My name is Byron Geldard and I have been living with testicular cancer for the past few months.
This is a short video explaining how it has changed my life for the better and worse

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