We hold 2 conferences a year which are free to attend and designed to empower you with appropriate information in the world of cancer.
Our aim is to keep you up to date with information on cancer research, knowledge and care, emotional well-being, diet and exercise and all are delivered by experts in their fields. They are interactive and relaxed with plenty of opportunities to share your experiences with people who understand.
Our 2019 dates are: May 14th and November 5th
LOOK ! – 14th MAY 2019 IS OUR NEXT CONFERENCE – DON’T MISS IT !
Dr Hannah Thompson
Chief Operating Officer, Cambridge Cancer Genomics
“Acting sooner when tumours change”
Deputy Chief Executive, Carers Trust, Cambridgeshire
“The work of the Carers Trust”
Dr Sam Smith
Academic Fellow, Yorkshire Cancer Research, University of Leeds
“Fact versus Fiction : – public awareness of risk factors for cancer”
6th November 2018 at Huntingdon Race Course.
The agenda we used is below: (please click on each page to enlarge)
Time to chat before the speakers joined us.
The speakers on the day were:
Dr Oana C Lindner
Research Fellow, Division of Psychological and Social Medicine, Leeds University Institute of Health Sciences.
Oana spoke on the “Complexities of life after cancer – the new journey.”
Dr Sally Carding
Consultant Palliative Medicine Hinchingbrooke Hospital. St Johns Hospice, Sue Ryder and Moggerhanger.
Sally’s subject was “Palliative care explained.
Professor Robert Thomas
Consultant Oncologist - Bedford and Addenbrookes Cambridge University Trusts
There were also our new addition “break out” groups:
- Annie Thantrey told us about the brilliant programme she runs at the Holistic Drop in Centre in Ellington on Tuesdays.
- Cherie Luckman relaxed us all beautifully with her lovely Yoga group.
- Penny Cook talked about Physiotherapy in cancer rehabilitation
- Andrea Cliff and Maureen Hayden from the nursing team provided easy nutritious snacks for people to make at home.
The conference ended with A Tai Chi demonstration delivered by people from Hunts Community Cancer Network who are learning Tai Chi together under the guidance of Dmitry Sokolik.
Click the corner (where there is a plus sign) to open and read the transcripts below:
Complexities of Life After Cancer - The New Journey - Dr Oana C Lindner
Dr Oana C Lindner
- Research Fellow, Division of Psychological and Social Medicine, Leeds University
- Institute of Health Sciences.
Dr Oana spoke on her work using an electronic questionnaire and electronic self-reporting for patients after diagnosis and treatment to ensure that symptoms and side effects are not forgotten.
- After diagnosis and chemotherapy it is essential to find a “new normal”
- Challenges are those of “Survivorship”
- Symptoms and late effects, physical, emotional and cognitive
- Pragmatic – juggling work, family, home and hospital appointments.
PHYSICAL – incl side effects of chemotherapy.
- eRAPID – used in Leeds, is an electronic means of self reporting adverse effects.
It has a 5 year trial period and is currently mainly addressed to people with gastro-intestinal and pelvic cancers.
People can report in on their mobile phones and the advice and treatment can then be tailored to match symptoms, severity and what people need.
It is based on an electronic questionnaire called “Qtool” to which the clinical team also have access so that they can pick up on any symptoms, even though people might have forgotten them.
Another similar project called ePRIME has now started in Yorkshire. It mainly involves follow up of people with ovarian cancer and people on trials of new drugs.
The challenges for all these projects are : –
RECOGNISING, MONITORING & REPORTING SYMPTOMS
Following a cancer diagnosis 20-30% patients have :-
- Clinical depression and anxiety
- Fear of recurrence
- Cognitive impairments such as memory and attention span. This is very much related to fatigue
- How severe people perceive their condition to be.
QUALITY OF LIFE
This is very difficult to quantify.
In Dr Oana’s study :-
- Group average age of 36 yrs, 50% female
- 2.7yrs post treatment
- Asked how depressed or cognitively affected they were.
Quality of Life was affected by illness perceptions such as :-
- “how do I feel ?”
- “do I have control?”
- “how sad, tired or apprehensive am I?”
- “What is the severity and duration of my illness ?”
- Finding it hard to “engage”
- Lost for words
- Hard to keep up with the conversation
- Impact of these on the quality of life
These all lead to people avoiding social situations, isolation and your family and friends all just want you to be back to normal.
How can you get back to work again ?
A lot of research on this has been done on brain tumours and central nervous system directed treatment.
- Try to determine the nature, extent, strength and weaknesses of any IMPAIRMENTS.
- This was measured by the ability to remember a poem and retaining it till the next day.
- Great individual variation between people in these skills.
- How long do these impairments last ?
- There is no evidence that they lead to premature brain ageing.
- They ARE affected by age, education and socio-economic group.
Dr Oana emphasised that the problems of research into these topics were considerable due to the variability of symptoms and the difficulty of getting objective measurements. Symptoms were difficult to quantify and it was very hard to determine whether cognitive changes were due to drug side effects or psychological factors.
Research in the past has concentrated far more on the physical effects of chemotherapy on bodily function and later on emotional changes including depression. There is a need for more work on the effects on cognition.
- Study in Leeds followed shared community follow up for people with germ cell tumours.
- Ideally this was a comprehensive, tailored, holistic aftercare
- Xrays should be delivered at regional centres
- Blood samples collected in the community
- CT scans done yearly in hospital
- Use of the Qtool online for follow up to record symptoms
All these enabled a more specific focused help available from the nurses. To get the right support it is necessary to :-
- Monitor and report symptoms
- Use social networks such as HCCN
- Focus on a good quality of exercise diet and sleep
- Get help to remain active and optimise advocacy
QUESTIONS for Dr Oana threw up the issue that all the above may be influenced by whether the care is curative or palliative. A tip for minimising the effect on cognitive function was to try to get back to normal gradually, not take on too much or expect too much from yourself.
Above all – DON’T BE AFRAID to admit to problems and ask the professionals for help
Palliative Care Explained - Dr Sally Carding
Dr Sally Carding
- Consultant Palliative Medicine, Hinchingbrooke Hospital
- St Johns Hospice, Sue Ryder, Moggerhanger
Dr Sally reminded us at the start that the meaning of palliative care is to care for the whole person with respect for personal choices and relief of suffering (physical, emotional and spiritual)
A quote from Dame Cicely Saunders – the founder of the hospice movement:
“You matter because you are you – and you matter to the end of your life. We will do all we can not only to help you die peacefully but also to LIVE until you DIE.”
Dr Sally took great pains to dispel the following myths surrounding palliative care:
- It’s only for people who have cancer
- It means I am dying
- It means my doctor has given up and there is no hope for me
- I will get pain now I am palliative
- Taking pain medication in palliative care means I will be addicted
It may well be that the oncologist has no further surgery/chemo/radiotherapy to offer, but that does not mean that they are giving up on you as a person ! You do NOT need to worry about getting addicted to pain relief, if you need it, you can have it.
PALLIATIVE CARE INCLUDES:
- Symptom management eg nausea, constipation
- Advance care planning ie helping you to make informed decisions
- Signposting – where to go for whatever you need
- Psychological support
- “Deathwifery” – preparing you for what is to come, removing the fear of death and dying
- Bereavement care
Dr Sally shared a few sample case histories with us, to illustrate the type of patients who require palliative care. These varied from needing short term control of pain to help to make future care decisions and making sure that peoples’ choices are respected at all times.
ADVANCE CARE PLANNING
Do not attempt resuscitation (DNAR)
It is vital to have the correct forms at home stating your wishes concerning this point, to avoid being “whisked” off to hospital. Bear in mind that real life resuscitation (CPR) actually IN hospital is only about 12% effective. A cardiac arrest in hospital will only give you a 15-20% chance of survival to discharge.
Preferred priorities of care
There are forms which you can fill in online to express your wishes about this. You should also discuss this in advance with a health professional.
Advance decision to refuse treatment
This is an important legal document stating clearly which treatments you wish to refuse. To be legal it needs to be signed and witnessed.
Lasting power of attorney
There are 2 types – (1) health and welfare and (2) financial. They involve nominating a person to make decisions concerning the above, on your behalf IF you no longer have capacity to do so yourself. It is a legal document and must be registered with the Public Guardian. It costs about £82 to set up.
This term – an odd one ! – but, as Dr Sally explained, it contrasts the process of leaving the world with the process of entering it. The two have a lot in common in that they require preparation and anticipation, seeing life as a “fatal condition”, understanding the whole process and how it normally progresses.
Both processes also need decisions to be taken in advance about who will be involved in care, how it will take place, who knows the plan and who gets to choose in a crisis.
HOW IT WORKS
Hunts Specialist Palliative Care Team (SPCT)
This consists of 2 consultants –
- Dr Sally Carding and Dr Annalise Matthews, both of whom work at Hinchingbrooke and Moggerhanger.
- 8 specialist nurses
- 1 occupational therapist
- A triage phone is manned 9-5 Mon- Fri
- There is an outpatient clinic at the Woodlands Centre, Hinchingbrooke.
HCCN Palliative care team
The 8 HCCN nurses support patients with cancer who are undergoing palliative or curative treatment, in their homes if at all possible. HCCN and SPCT are all based at Woodlands and liaise closely about their patients, so there should be a seamless hand over from one team to the other when required.
SUE RYDER HOSPICE at MOGGERHANGER
Hospices offer specialist palliative care to patients with a life-limiting illness. They have a multidisciplinary team. Inpatient care is available for symptom control (such as lymphoedema) and end of life care. Day care therapy is also a part of what they do. The average stay is about 2weeks and it is most definitely NOT a one way trip – people go home again after pain control is achieved. Other hospices such as Arthur Rank near Cambridge and Thorpe Hall near Peterborough offer an overnight “hospice at home” service. There is also some overnight Marie Curie nurse care available.
BOOKS TO READ
- “With the End in Mind – Dying, Death and Wisdom in an Age of Denial” by Kathryn Mannix
- “Being Mortal” by Atul Gawande
Both very good
Dr Sally summed up by reiterating that palliative care can be relevant:
- Right from the diagnosis because nothing can be done – NOT necessarily meaning that death is imminent – people can be on palliative care for many years.
- Much further down the road when disease has progressed
Some people expressed anxiety that they had experienced relatives or friends going into hospital with a DNAR notice and it being ignored by the medical staff. Dr Sally said that this situation was very undesirable and hopefully would be an issue less and less in the future.
Lifestyle & Cancer - An Update - Profesor Robert Thomas
Professor Robert Thomas
Consultant Oncologist, Bedford and Addenbrookes Cambridge University Trusts
Professor Thomas emphasised that there is an overload of information on diet and exercise after a cancer diagnosis and it is very confusing indeed for patients who don’t know what they can trust.cancernet.co.uk and keep-healthy.com are sites that have blogs and info about lifestyle choices relating to health and cancer in particular.
Prof Thomas’s own book “Lifestyle and Cancer” is a good source also. One tip was to try to avoid multiple drugs to sort out symptoms after cancer treatment – use more natural remedies such as flax seed and lots of water for constipation, more exercise for blood pressure problems.
EXERCISE AFTER CANCER
3-5 hours per week has been shown to result in a slower progression of the disease and a 20-30% lower relapse rate. Walking football is a really good option and has been shown to reduce symptoms in prostate cancer. The choice of an appropriate exercise is important eg – you need a weight bearing exercise to help with osteoporosis, swimming would be no good.
Due to the 180 biochemical changes in the body after exercise we see –
- Reduced inflammation
- Increased immunity
- A decrease in excess insulin
- An increase in the expression of “good” genes
- A decrease in the expression of “bad” genes
- A decrease in testosterone or oestrogen which are anti-oxidants.
It has been shown that having weak muscles leads to a poorer response to cancer treatment so exercise benefits your prognosis.
Other LIFESTYLE FACTORS to consider:
- Sun exposure, some is beneficial
- Try to reduce smoking and alcohol intake
- Eat calcium rich foods
- Eat vitamin K2 rich foods
- Eat polyphenol rich foods
- Eat plant based proteins
Tips for a HEALTHY WEIGHT:
- Ensure a healthy gut
- Take healthy probiotic bacteria
- Try 13hours overnight fasting – this lowers levels of glycated haemoglobin (a cancer marker), it
- Lowers inflammatory markers and leads to a 36% lower risk of recurrence (in breast cancer)
- Take regular exercise eg walk before breakfast.
- Reduce intake of processed sugar
- Too high a level of sugar in the morning leads to weight gain because it can contribute to insulin
- Resistance leading to type 2 diabetes, chronic inflammation, increased oxidative stress, fatigue and joint pains. It is also less satiating and so it’s better to eat slow release carbohydrates in the morning if possible eg oat porridge/ nuts/ fresh fruit/ puffed buckwheat – LOW sugar !
Many studies have shown that intake of a high sucrose diet, overweight and inactivity lead to a higher prevalence of bowel and pancreatic cancer. A study is currently in progress on whether having sugar in tea leads to a greater incidence of cancer.
POLYPHENOLS are very important to reduce the glycemic index and can be found in nuts, fresh fruits and legumes. Polyphenols can reduce joint and muscle pain, they can increase recovery and performance. Creams containing polyphenols have reduced nail damage (oncholysis) sometimes seen after chemotherapy. There is a study in progress to see if cancer can be held at bay by polyphenol rich foods, results hopefully next year.
Capsule containing pomegranate, green tea, broccoli and turmeric (high in polyphenols). This supplement has been shown to reduce PSA levels and there was a positive correlation between the reduction in tumour size and reduced PSA levels in a paper by Prof Thomas.
CHRONIC INFLAMMATION leads to cancer, fatigue, irritable bowel, low mood and depression, arthritis, diabetes, increased cholesterol, heart disease, hypertension, dementia and Parkinson’s disease. Inflammation is reduced by nuts, legumes, exercise, healthy bacteria and polyphenols. Kefir, miso soup and live yoghurt all help to promote “good” bacteria, reduce the inflammatory index and have anti-oxidant effects.
Lots of hospitals are now giving probiotics before a patient is admitted as they increase the effect of cancer drugs, reduce the effects of stress, lead to a greater absorption of polyphenols and increase immunity.
More probiotics should be given during –
- Admission to hospital
- Flu season
- Intense exercise
PRE and PROBIOTICS help improve “good” gut bacteria and reduce “bad” bacteria thus improving polyphenol absorption. DON’T take vitamin and mineral supplements unless specifically prescribed – they can make things worse.
Prof Thomas quoted several case histories of people with cancer who had been helped by a change of diet to one using the food stuffs discussed above. Recurrence of the cancer had been markedly reduced in several of them, particularly when used in conjunction with a regular exercise regime and stopping smoking.
All in all – the overwhelming message was EAT HEALTHILY and EXERCISE !
25th April 2018 at Huntingdon Race Course.
The agenda we used is below: (please click on each page to enlarge)
In introducing the topics for the day, Karen explained that the content is carefully chosen as cancer brings with it many emotional issues and physical changes – not all of which are easily addressed in the home through conversations with loved ones. Bringing together specialists to explore and facilitate those more difficult conversations in a very down to earth way can be valuable, allowing them to be developed later at home and with the nursing team.
Managing Intimate Relationships after cancer
This was the perfect introduction to Karen Gardiner, Managing Director of Purple Orchid who led an engaging session on Managing Intimate Relationships after cancer. Purple Orchid is called the women’s self-care company rather than health-care company as they are committed to the idea of looking after ourselves better to enjoy good health for longer in life. Self-care is about being proactive, making decisions about what’s best for us not just during medical treatment but before we even need it, possibly to avoid it. Thus her message resonated strongly with everything HCCN knows about lifestyle and cancer. Maintaining healthy habits on an everyday basis means our bodies are getting the best possible chance to become and stay healthy and strong. Balanced nutrition, adequate physical activity and avoiding toxins such as nicotine and alcohol prepare the body for the challenges it faces every day.
Purple Orchid specialises in the area of women’s health which is “above the knee, below the waist and at the front”– that’s the bit people least want to discuss. When active treatment has finished, some survivors’ needs change and relationships may shift. A significant number of cancer patients will experience physical, emotional and psychological changes to their intimate relationships. Your thoughts and feelings about your own sexuality, sexual intercourse and intimacy may change and open honest communication is essential. Some symptoms such as vaginal atrophy, radiation cystitis and vaginal shortening, tightening and pain during intercourse can be addressed with Purple Orchid products. A good psychosexual counsellor can also help couples rediscover their intimate relationship with each other.
Describing a range of products to help with such physical issues, Karen came with free samples which certainly brought smiles to many faces. Two in particular:
- Vaginal dryness is a relatively simple condition with the product Hyalofemme as a simple solution. Hyalofemme is a hormone free, effective and well accepted solution for all women who experience vaginal dryness.
- Gepan instill has demonstrated good clinical results with bladder problems such as interstitial cystitis, overactive bladder syndrome, radiation cystitis and chronically recurring cystitis.
Then came the opportunity to touch and feel some vaginal dilators supplied by Pleasure Solutions. Pleasure Solutions works closely with both medical professionals and people who’ve experienced health issues to design safe, sensory sex tools that help you to connect with your body. Embracing the changes in intimacy can be one of the most challenging parts of feeling ‘you’ again.
Macmillan recognises that around 350,000 people in the UK experience sexual consequences due to cancer and its treatment. The topic of sex after cancer can be neglected by medical professionals – but your HCCN nurses are now equipped to discuss these issues and help in practical ways. Nurse Karen is investigating how people requiring these products can obtain them through the NHS.
Memories Are Made Of This
Next, our very own Marion Foreman – in her own style – challenged us with ‘If you knew when it was coming, would you do anything differently?’. The ‘it’ being your death:
Her lively presentation looked at death from a number of angles. She included a Dean Martin song, a BBC video made by Kathryn Mannix (a palliative care doctor) and a poem from Helen Dunmore.
She went on to tell us the inspiring story of George Monbiot, a columnist with The Guardian, recently diagnosed with prostate cancer who applies three principles which he believes sit at the heart of a good life. https://www.theguardian.com/commentisfree/2018/mar/13/prostate-cancer-happy-diagnosis-operation
In closing, Marion summarised her message as:
If you want to be remembered as a miserable git – go ahead
But if we want to be remembered as loving and kind – here is our opportunity
Every day we have a choice – make the most of it
Write that letter, make that phone call
Tell that person how much they mean to you
Leave behind your love – the world will benefit
Nutrition for Health and Wellness
After lunch, Julia Wolman, Public Health Engagement Manager joined us from the World Cancer Research Fund, which is the UK’s leading cancer prevention charity. They fund global research into the links between diet, weight, physical activity and cancer. Their work empowers people to take action to lead healthier, happier, cancer-free lives – the message HCCN believes we should all hear in relation to nutrition and well-being. Julia brought a wide range of information leaflets, health guides, recipe books, and more.
She began her session by describing the WCRF’s Continuous Update Project – which analyses the latest evidence on a range of cancers and produces key findings and reports – global research on preventing cancer. They analyse the research so we have access to the best cancer prevention advice in the world. https://www.wcrf.org/int/continuous-update-project/continuous-update-project-findings-reports
She then became quiz master and took us through an enjoyable test of our knowledge on a range of ‘facts’ about diet, maintaining a healthy weight and physical activity. https://www.wcrf.org/int/continuous-update-project/our-cancer-prevention-recommendations
Break out groups
Later in the afternoon, we had for the first time at conference an opportunity to move into smaller, ‘break out’ groups that demonstrated the range of skills and activities that the HCCN team can offer.
What Is Acupuncture? – Karen Moseley and Harriet Da Costa
Acupuncture treatment involves fine needles being inserted through the skin and left in position briefly. The number of needles varies and treatment may be once a week initially then at longer intervals as the condition responds. A typical course of treatment lasts 5-8 sessions. Acupuncture stimulates the nerves in the skin, muscle and other tissues and can produce a variety of effects. We know that it increases the release of the body’s natural painkillers, including endorphin and serotonin. Acupuncture can do more than simply reduce pain. Current research shows that acupuncture can have an effect on many of the body’s systems – the nervous system, muscle tone, hormone production, circulation and allergic responses, as well as the respiratory, digestive, urinary and reproductive systems.
Quick Nutritious Snacks – Andrea Cliff
A session devised to show how to have high calorie, tasty, nutritious snacks, that are easy and quick to make, when you are struggling with energy and appetite.
Complementary Therapies: A need for a collaborative and adapted approach – Annie Thantrey and Andi Lines
While tense muscles may be soothed by massage, gentle work can be just as effective if the therapist and client work together to find ways that the client might better manage their tension. This is a more collaborative approach that is both empowering and person centred.
Exercise why bother? – Marion Foreman
An exploration into why adopting a healthy lifestyle matters – before going on to talk about and demonstrate how to develop an active lifestyle without needing to take out gym membership.
In closing out the day, the nurses took the lead in demonstrating the importance of exercise by launching a virtual walk from John O’Groats to Land’s End via Huntingdon, 972.5 miles. Karen said the team would not count the miles completed whilst working but team members will take on extra activities!