Blog 106 Monday 30th April 2012

Spreading the word about Bowel Cancer and  as a volunteer for Bowel Cancer UK,  I have recently been interviewed by Hannah at "Northants News" my article, "Cancer Survivor Blogs Experiences" can be read Here . I am also going to be interviewed "On Air" by BBC's John Griff  this week, John does a great show about local stories and local people.

You can listen to my interview with John Griff "Live" HERE at 2pm GMT on Thursday 3rd May.

The more I hear about people dying from Bowel Cancer, the more I think........ `Surely they experienced some symptoms.......blood in their poo, or a change in bowel habits for a few weeks....... Diarrhoea maybe ...........a pain or a lump in the abdomen extreme tiredness for no reason. It is important to have yourself checked out quickly, or get more info from a trained person at Bowel Cancer UK , 0800 8 40 35 40.

I originally went to my Doctor with some of these symptoms. I was 45 years old at the time. My Doctor sent me away with a diagnosis of Irritable Bowel Syndrome. Mydiagnosis was wrong, Bowel Cancer took hold and started to grow eventually spreading to my lungs.

The UK Government only send out Bowel Cancer screening kits for people between 60 and 69 years old. Fifteen years after my symptoms started would would have been too late for me......... thankfully I am one of the lucky ones,  my Bowel Cancer was caught in time......................  

Blog 105 Thursday 26th April 2012

Having blogged my Journey through cancer and my experiences, I said very little of the emotional Physical or Psychological effects on me. On diagnosis I experienced a terrific sense of  Sorrow and Sadness, not unlike loosing a loved one, a sudden reality that my future may not be as I had lived to expect. Anger & Resentment, were also emotions I felt at first,...............Depression..... It helped me to stay positive at this time, that doesn't mean you have to feel happy and cheerful it just meant for me, that I acknowledged with the situation and found ways to cope, and even made new plans for the future taking account of my treatments.

I allowed myself at first, not to bother to change out of my PJ's in the morning..... I was being nursed at home, "Why should I"?  A sudden bout of reality later kicked in...............I can give up or I can fight..............I chose to fight....... Psychologically, I felt very vulnerable, I was on toxic drugs that were killing my immune defence system. I was told that any sort of virus would see me immediately admitted to hospital. This also gave me feelings of panic and lack of control. My network of family and friends were made aware of this and stayed away for the duration of their colds and flu viruses!!  I became extremely tired and submitted to enforced sleeps during the day, resorting to sleeping tablets at night. Again reality later kicked in and I decided to get busy around the house, walk the dog, start painting again, do voluntary work..... It sure helped.

It is all to easy, like me at first to allow the diagnosis of cancer to stop you in your tracks and almost submit to 'Due Process'. Studies on the subject of keeping "Positive" or "Positive Thinking" are not understood and have had mixed results......... In my experience, having endured major bowel surgery for cancer and major lung surgery plus 6 months of chemotherapy, I believe that by staying Positive, Active and discussing openly, my thoughts,  and having a sense of "I want this disease out of my system" worked for me .......................There is lots of help and support out there that got me through, like Bowel cancer UK or Macmillan cancer support these sites are full of good information.

Early diagnosis of bowel cancer is the key see "Signs and Symptoms" for early diagnosis.

Blog 104 Tuesday 17th April 2012

Today, I have included  a copy of Bowel Cancer UK's 25th Anniversary press release and parts of the Executive Summary................... Tomorrow; as part of the Bowel Cancer UK awareness campaign, I am being interviewed by a journalist from "Northants News"  who will be reporting on my personal experience with Bowel Cancer.

Embargoed press release: 00:01 Wednesday 18^th April 2012

GOVERNMENT COULD CUT BOWEL CANCER DEATHS BY 60% BY 2025 SAYS BOWEL CANCER UK

The Government could cut deaths from bowel cancer by 60% by 2025 if it followed the recommendations in a new report launched today by Bowel Cancer UK. Bowel Cancer UK's ambition is also for an additional 2,500 people with bowel cancer per year living for at least five years after diagnosis by 2025. The report also reveals that more than one in five patients weren’t treated with respect and dignity by doctors and nurses

 Bowel cancer is the UK’s second biggest cancer killer, and the overall five-year survival rate of those diagnosed is just over 50% 2. In its report, 2025 Challenge: Saving and Improving Lives, Bowel Cancer UK calls on the Government to examine its targets in reducing mortality, improving patient experience and increasing survival to dramatically improve outcomes in all three areas by 2025.

 The report reveals that:

• Deaths from bowel cancer could be cut by 60% by 2025 – from 18 in 100,000 to 7 in 100,000 – if realistic goals were followed.
• Almost one in four patients do not understand doctors’ explanations about their disease, and one in five say that they are not treated with dignity and respect 3.
• 20% of patients say they have received conflicting information about their condition 4.
• Currently, the survival rate of patients with bowel cancer is just over 50%.

Bowel Cancer UK’s ambition is to increase the proportion of people with bowel cancer diagnosed at an early stage, and improve the survival rate of people diagnosed with advanced disease. Achieving these goals would save an additional 2,500 more lives per year by 2025.

Bowel Cancer UK is calling on the Government to improve all three aspects of cancer care by:

• Encouraging greater uptake of screening to ensure earlier diagnosis. Uptake is only just over 50% at the moment
• Improving diagnostic capacity and reducing waiting times to cope with growing demand.
• Detecting and diagnosing bowel cancer at an earlier stage. Currently only 9% of patients in the UK are detected at the very earliest stage of the disease 6.
• Ensuring access to and support in decision making about the best treatments for advanced cancer regardless of where they live.
• Making sure patients receive the best care by ensuring that hospital, community and social care services are joined up.
• Improving the quality and consistency of written information given to patients with bowel cancer – currently one in three patients receive no written information.

Deborah Alsina, CEO, Bowel Cancer UK said: “We want to dramatically improve outcomes for people affected by bowel cancer, minimising the disease’s impact and helping people lead longer, healthier and happier lives.”

“We have a duty to save more lives and the proposals outlined in this report should be the Government’s absolute minimum goal.

“We look forward to working with the government, NHS and other charities to help save more lives from the UK’s second biggest cancer killer.”

 About the Bowel Cancer UK ‘2025 Challenge: Saving and Improving Lives’ report:

This report explores the progress over the past 25 years in relation to mortality, survival and patient experience. It celebrates the progress over the last 25 years and identifies the areas where more work is required and establishes realistic goals for improvement by 2025.

Mortality

The past 25 years:

Nearly half a million people in the UK died from bowel cancer in the past 25 years.

Our goal:

An age-standardised mortality rate of 7, meaning 7 people out of a standard population of 100,000 dying from bowel cancer by 2025.

Survival

The past 25 years:

Until recently, the majority of people with bowel cancer had not survived five years after their diagnosis.

Our goal:

An additional 2,500 people with bowel cancer per year living for at least five years after diagnosis by 2025.

Patient experience

The past 25 years:

Overall, cancer patients’ experience of care has improved since 1999, but not in all areas.

Our goal:

All trusts achieving 98% on all key patient experiences measures by 2025.

       

About Bowel Cancer:

Bowel Cancer is the second most common cause of cancer death in the UK, affecting both men and women. Every year just over 40,000 people are diagnosed with bowel cancer and more than 16,000 people die of the disease.

About Bowel Cancer UK:

Bowel Cancer UK is celebrating its 25^th Anniversary. We are a charity aiming to save lives by raising awareness of bowel cancer, campaigning for best treatment and care, and providing practical support and advice.

2. Executive Summary

This report explores progress over the past 25 years on mortality, survival and patient experience. It celebrates the progress that has been made, identifies the areas where more work is required and establishes realistic goals for improvement by 2025.

The projections are made on the basis of what we know about bowel cancer, as well as the progress that has been made in the past. The goals should therefore be seen as a minimum objective for improving bowel cancer outcomes.

Achieving these goals will inform Bowel Cancer UK’s work over the next few years, helping us focus on what matters most to patients. We have developed several calls for action which, when implemented, will help even more people affected by bowel cancer and help us further improve the experience of people with bowel cancer.

Mortality

The past 25 years: Nearly half a million people in the UK died from bowel cancer in the past 25 years Our goal: An age-standardised mortality rate of 7, meaning 7 people out of a standard population of 100,000 dying from bowel cancer by 2025. This would mean that there would have been a 75% reduction in the age standardised mortality rate from 1987.

Our calls to action

Reducing the number of people who die as a result of bowel cancer will require improvements in prevention, early diagnosis and treatment. We need to:

· Focus on preventing bowel cancer through simple changes to diet and lifestyle as these can reduce someone’s risk of developing bowel cancer.

· Improve diagnostic capacity with short waiting times. Endoscopy capacity should more than double over the next five years to cope with the growing demand created in part by a rise in incidence due to an ageing population.

· Encourage greater uptake of screening as it can prevent cancer for some people and ensure that others are diagnosed at an early stage.

· Implement new screening technologies and develop the next generation of screening tests so that we can maximise the number of cancers prevented and lives saved.

· Investigate the symptoms of bowel cancer. This must involve empowering and supporting GPs to refer people with possible symptoms properly.

· Raise public awareness of bowel cancer so people understand their risk and are motivated to act promptly.

· Ensure consistent best treatment for every patient irrespective of postcode.

Survival

The past 25 years: Until recently, the majority of people with bowel cancer had not survived five years after their diagnosis. Our goal: An additional 2,500 people with bowel cancer per year living for at least five years after diagnosis by 2025.

Our calls to action

Helping people who are diagnosed with bowel cancer to live longer will require improvements across the patient pathway, ensuring that patients are able to benefit from the best of what we already know, as well as the results of continuing efforts to develop more effective interventions. We need to:

· Detect, diagnose, prevent and manage bowel cancer at the earliest possible stage when interventions are most effective.

· Improve treatment rates and offer the most appropriate treatment for all groups in society. There are currently wide variations in the numbers of patients who are offered a choice of treatment, both across the UK and according to demographic group.

· Ensure access to and support in decision making about the best treatments for advanced cancer. This should be regardless of geographical area as it is now possible to significantly extend and improve quality of life.

· Improve bowel cancer patient safety by using good practice guidance on infection control.

· Help and support people to recover from treatment by developing appropriate services and interventions. This is including for the late effects of treatment.

· Provide high quality palliative care as a vital component to improving the quality of life of cancer patients.

· Improve data collection to understand more about what improves survival as well as why variations in survival occur.

· Continue and prioritise research into bowel cancer as this will have a significant impact on survival by 2025.

Patient Experience

The past 25 years: Overall, cancer patients’ experience of care has improved since 1999, but not in all areas. Our goal: All trusts achieving 98% on all key patient experience measures by 2025.

Our calls to action

A positive experience of treatment and care should be a minimum standard for every bowel cancer patient. More can and should be done. We need to:

· Expand access to bowel cancer clinical nurse specialists as they have a significant positive impact on the experience of cancer patients.

· Ensure strong multi-disciplinary working to ensure the best interests of the patient which in turn is the key to good patient experience.

· Ensure healthcare professionals communicate effectively and compassionately with patients about their condition and treatment.

· Improve the quality and consistency of written information given to patients with bowel cancer so they feel supported throughout the different stages of their pathway.

· Promote access to specialist supportive services, including diet and nutrition advice and stoma care as this can help with a patient’s experience of treatment and care.

· Ensure that joined up services are shaped around the needs of patients rather than the other way around.

Conclusion

Over the past quarter of a century, the way in which bowel cancer is perceived has been transformed. Public attitudes are changing, awareness is higher, screening offers the opportunity of earlier diagnosis and new treatments have transformed patients’ prospects. Although this is a cause for celebration, we must also remember the half a million people who have lost their lives to bowel cancer in the UK during this period and the many thousands more who have had their quality of life limited by the disease.

Now is not the time for complacency. It is the time to raise our ambitions. This document sets out some challenging but achievable goals for improving every dimension of bowel cancer outcomes, as well as the practical steps that need to be taken to meet them.

Blog 103 Thursday 12th April 2012

All went well yesterday with the removal of the Porta Cath albeit quite painful. As I was in as a day case surgery, the intention is to get the patient out as soon as possible. In less than two minutes my right side chest was shaved, spray frozen, daubed with iodine, and injected with anaesthetic, I was covered almost like a tent and the incision began. within fifteen minutes it was finished and sewn up. With the surgeon's wishes of not wanting to see me again (Meant in the best possible way) I was on my way home. When the anaesthetic wore off , Wow................... trying to sleep was a pain !!!!

Today I was so pleased to read the following article in our local paper for those that have suffered this particular cancer .......................................

NEW WAY TO PREDICT CANCER RETURNING           

Published on Thursday 12 April 2012 16:28 Kettering Evening Telegraph

Researchers have developed a new breast cancer test “that predicts whether or not their breast cancer will return after surgery”, The Daily Telegraph has today reported. The newspaper says the test may mean that thousands of women with a low risk of recurrence could be spared unnecessary chemotherapy.
The story is based on new research that compared an existing method for predicting cancer recurrence, the Oncotype DX recurrence score (RS), and an adapted version that also took other clinical data into account. To test this new method, called the “recurrence score-pathology-clinical assessment” (RSPC), researchers examined long-term study data on 1,444 women with early-stage, hormone-sensitive cancer that had not spread beyond the breast.
The researchers found that under the RSPC model, more patients were classified as being at low risk for disease recurrence compared to the original test. It did not, however, improve the ability to predict which patients would benefit from receiving chemotherapy. As such, the test should be considered “still in development” and not yet ready for use in practice. Its accuracy and ability to guide treatment choices will now need testing prospectively by applying the model to women with breast cancer before treatment and waiting to see if its results later prove to be accurate.

Read the full article HERE 

Blog 102 Tuesday 10th April 2012

Finally ......................I will be attending The Three Shires Hospital in Cliftonville Northampton tomorrow at 13.50 to remove the Porta Cath in my chest. The Porta Cath is a wonderful device is inserted completely under the skin via surgery and takes the Chemotherapy drugs without fear of infection. It can take approximately 1000 injections before it needs replacing.  I have been very fortunate having my Chemo at home via the above it made it all so easy. Having said that I haven't really got on with it, Its become quite sore and irritating especially when trying to sleep.The last remnants reminding me of the cancer and a journey that has lasted almost three years. My consultant for tomorrow is David A Ratliff MD FRCP FRCS Vascular, Laparoscopic and Endocrine Surgeon. My son Matthew & his galfriend Timone are safely back from Australia and will be driving me to/from hospital. I'm warned no driving for 48hours after the surgery............Brilliant !!!!!!Wendy will have to drive when we visit our friends Iain & Myra next weekend.

Blog 101 Wednesday 4th April 2012

Anyone who has previously read this blog will know, I have volunteered for Bowel Cancer UK. Unfortunately I missed the 2nd training session due to the recent loss of my father. Bowel Cancer UK volunteers attend events and give talks to raise awareness of Bowel Cancer, using statistics, symptoms, risk factors, and prevention. The volunteer is armed with leaflets with loads of information for good bowel health and also on the UK's screening programme. Bowel Cancer UK give you the facts about bowel cancer Telephone      0800 8 40 34 40         If, like me you are diagnosed early, bowel cancer is very treatable. What you must look out for is :-)

(1) Bleeding from your bottom and or blood in your poo. (2) A change in your bowel habits, lasting three weeks or more. (3) Unexplained weight loss. (4) Extreme tiredness for no reason. (5) A pain or lump in your tummy.

In my experience, I only had one of the above symptoms being, a change in my bowel habits. I had diarrhoea, which my doctor wrongly diagnosed as Irritable bowel syndrome. It still makes me angry, because, apparently I didn't fit the "profile" of someone that could have the early signs of cancer. (I was too young at 46) , my doctor at the time didn't bother with further tests. It took a doctor in Australia when we emigrated, to take things further and finally diagnose the disease.

Bowel Cancer UK warns of eating too much processed foods, ie bacon, ham,salami, sausages and burgers, and suggests that we should eat them as a treat only, as these foods could lead to bowel cancer. Studies from Sweden, also show that  just 50grams of processed meat a day raises the risk of pancreatic cancer by a fifth.  SO!!!!!!! I was amazed to read in
the Mail on Sunday "Review" paper that "Bacon can be good for you" by Zoe Dare HALL.

Be sure to read the bit that says  buy "Good-Quality Sausages"  "Made from Outdoor-Reared",  "Toxin-Free Pork" and which contain "90 per cent pork meat".  I'm sorry, but like the majority of British people, I do not shop at Harrods for my sausages !!! and reading the fine print on sausage packaging from supermarkets is becoming evermore problematic for me with age!!!!!

Zoe Dare HALL also quotes Rachel Green, of BBC3’s Kill It, Cook It, Eat It, who suggests that we buy from Farm Shops. Rachel says ..."I like to use more mature, flavoursome rare-breed porks such as Gloucestershire Old Spot or Tamworth."  We do not have the luxury of a farm shop selling such high end sausages in our area, but Zoe, I will try in Tesco and Morrisons for a laugh!!!!!!! I believe its headlines like that above that causes confusion amongst the majority and aimed at the minority who are demographically privileged.