Thursday, 1 December 2016

A Mother’s Story – Virna Baillie




I have 3 amazing boys Oliver Max and Jordan. Big strapping lads full of fun and life, girls, gym and lots of mess.  Jordan my youngest was my brightest star. I love all my boys, but somehow with Jordan we just connected more. He made me laugh; he was the master of charm; good-looking and mischievous.

For some deep down reason which I can’t really explain, I always worried more about Jordan. Not because he gave me reason to, but I had an overwhelming fear of loss where he was concerned.

In December 2014 I looked at Jordan and panicked “What's wrong with my boy, something was wrong. His face looked puffy and his eyes heavy.  But hey, this was a busy 18 year old, with an amazing zest for life. Late nights and early mornings; a new college course just started and a healthy social life.

But it was more than that! I sent a picture of Jordan to my friend Trish and asked her "Does my Jordan look ok to you?"  She answered "Yes maybe a bit tired and he has just had a cold". She was right and Christmas was soon upon us.  Jordan loved his food. He ate like a giant.  However, that Christmas Jordan never finished his dinner. "I’m full Mum". I felt sick with panic. 

However, Christmas came and went. Then on 30 January 2015, my brother’s birthday, Jordan complained about a pain in his ribs. He was still able to mess around with his friends and his appetite seemed fine but I thought it best to get it checked so booked a Doctor’s appointment. The doctor’s initial prognosis was a floating hernia.  Jordan did a lot of sport: running, boxing and spent a lot of time at the gym. She suggested booking an ultrasound scan.

Meanwhile, his pain was getting worse and when he came home from college barely able to walk, I took him straight to the Royal Free hospital.  I felt physically sick and just wanted to know what was wrong with my boy.   He was seen by two surgeons and had a number of blood tests and was then given the all clear to go home. Bloods were all normal and his swollen spleen was put down to a sore throat he had just after Christmas.

I didn't buy it. I don't know why I had this ingrained fear.  Was there a major heartache and trouble ahead? I was so fearful for him.

Jordan’s scan appointment arrived and I had to wait outside as he didn’t want me to come in with him. I felt frozen sitting waiting and when the nurse suggested I call the Doctor the next day for the scan results, every alarm bell went off in my head, in my gut – ‘Why on earth would she say that?’ ‘Why so quick?’

I called the GP early the next morning but was told the results were not yet there. I felt relieved – if there was something wrong, the urgency would surely mean the results would be ready.  I slid into a selfish denial which now I beat myself up about continuously.

My relief was short lived – until that Thursday in March.

I came home from shopping and went to my bedroom, took a deep breath and called the surgery, but still no results.  This was nearly 2 weeks now since his scan.  This was ridiculous and so frustrating.  So I took the bull by the horns and called the scan company myself.  They told me that they had faxed my GP the results the following morning as an urgent next day referral. 

My head buzzed, my vision blurred and panic consumed every inch of my being.  My mouth so dry I could barely talk, I called my GP asking where the scan results were.  She informed me that she would call me back within 5 minutes. I paced the floor, the seconds dragged on like hours and I felt sick. The phone rang.

Before she could speak I asked; "is everything ok?"

Her words back to me: "Not really"

"What's the problem"? I asked

“Jordan has either a really serious stomach infection or cancer.  I'll make Jordan a referral to the cancer center at the UCH.” I put the phone down unable to hear anything other than the word ‘cancer’.

I called my Mum, his Dad, anyone who could calm my mind. I was hysterical.  I was in bits:

 “Not my boy, not my beautiful Jordan, come on God not this.  I can't, I can't face this” the mounting fear suffocating me.

“How on earth would I tell Jordan?  How would I put one foot in front of the other, or learn to be brave?  How can that word ‘cancer’ have so much power?  How can cancer come into our lives and rip my son’s life apart - steal his carefree spirt, 18 years old and just starting out; a young man about to be robbed  by this disgusting disease.



              My heart and soul felt broken. How can a parent manage this journey with their child?  

Thursday, 24 November 2016

Play PharMADNESS

Many of us are aware that the current system for developing new medicines relies on private pharmaceutical companies who have a duty to maximise returns for shareholders.  But it isn’t always easy to understand how the conflict of interest between the needs of shareholders and patients can manifest itself in sub-optimal benefits for patients and lead to a sub-optimal use of public investment in medical research.

To highlight these issues and raise awareness of how the current profit-led system for medical R&D is letting down patients, the Missing Medicines campaign has produced a clever online game that puts you in the seat of a Big Pharma Exec, running your own pharmaceutical company.




The game asks you to make annual decisions on which drugs to invest in and how much you want to spend on key areas like R&D, marketing and legal matters.  By doing this it highlights in a very effective way the trade off between commercial and public health interests – a stark choice between making money and saving lives.

After playing a couple of turns of the game and producing large profits, you start to see the negative consequences of your decisions on patients; something which is explained further through some a number of videos.

Ultimately the game aims to raise awareness of the need to move away from the current profit-led approach to medical research.

To play the game now visit the PharMADNESS website.

Wednesday, 2 November 2016


Ode to Kilimanjaro


Today we have something a little different for you on the blog.  John Piears, one of our volunteers and fundraisers, has recently returned from climbing Kilimanjaro to raise money for Yes to Life. He chose to write about his experience in the form of the following poem.
Fundraising is the life-blood of a charity like Yes to Life and enables us to keep supporting the growing numbers of people coming to us for help with Integrative Medicine. If you would like to do some fundraising for us, however big or small, your help will mean a great deal and can make a real difference to lives of people facing the most desperate of situations. Don’t hesitate to get in touch if you would like to discuss any ideas.



ODE TO KILIMANJARO

An uphill struggle to a barren summit...
Shall I book it? Too late, I've done it!
I'm going to climb a mountain, the almighty Kili 
Not sure if I'm brave or just being silly!

We head to the airport with a bag full of kit 
Waterproofs, sun hats and fleecy mits 
We're prepared for all weathers as we take to the air 
With nine hours of flying before we get there

An overnight flight with hardly any sleep 
Does little to prepare us for our impending feat 
But we check into a lodge and enjoy a few beers 
As we settle our nerves and share our fears

There's 15 in the group, with Phil the trek leader 
And a doctor too, I hope I don't need her!
All lovely people with their own personal story 
All hoping to get that moment of glory

A good night's sleep and we're off to the start 
Already I can feel the beat of my heart 
It's a drizzly beginning as we head into the woods 
But the rain soon leaves, no need for a hood

We trek up through the forest at a pace like a snail 
Too quick and the guides "Pole pole" would hail 
It's better to acclimatise if we all go slow 
Frustrating at first but worth it we know

We reach our first camp a thousand metres up 
That's a mountain at home but here no such luck 
Our tents are all ready and we're greeted with songs 
From the porters who carry our camp all along

A hearty meal then it's off to bed
An early start, "Don't be late!" Phil said!
Already the air is harder to breathe
As the oxygen levels start to recede

We tuck into breakfast after a restless sleep 
Downing coffee and porridge then we're up on our feet 
As we head to camp Shira, it's a steep climb today 
We're all exhausted by the end of the day

Now nearly 4000 metres and the views are amazing 
With beautiful dark skies that are great for star gazing 
The forests are gone, replaced with bushes and rocks 
And the dust gets everywhere, not just in our socks!

We measure our oxygen and heart rates as well 
As the toll from the climb begins to tell 
Headaches and nausea have started for some 
And nosebleeds as well are about to come

Day three arrives, we know the routine
Breakfast, fill the water, apply the sun cream 
A stretching session gets our muscles all powered 
Then we head off for lunch at Lava Tower

We're really high now, nearly level with Mt Blanc 
And the terrain's far more open, the bushes all gone 
Replaced with black rocks all made of lava 
From volcanic explosions erupting like cava

We descend to camp three for much needed rest 
'Climb high, sleep low' is the plan that works best 
A baby wipe bath and wash of the feet 
Then off to the mess tent for something to eat

Day four arrives, it's a big one today
An eleven hour trek before our next stay 
Our first challenge of the day, the Barranco wall 
One foot wrong and it's a long way to fall

An exhausting climb with lots of false summits 
But we make it to the top, thank God we've done it!
A group jump photo then we march off again 
Not so steep now much flatter terrain

Then the climb picks up as we head to camp four 
The high camp, after which there are no more 
We sort out our thermals, night torches and gloves 
As we get ready for the part we'll hate or love

It's 1am, very cold and dark
This certainly won't be a walk in the park!
Five hours of climbing before the sun rises 
Head down, small steps, just think of the prizes!

We're struggling to breathe as the air gets thinner 
And some people are stopping to bring up their dinner!
Headaches and heartaches bring tears for some 
As batteries run low and emotions overrun

Then finally the sun appears in the East 
And we bathe in its warmth, what a feast! 
It's a beautiful sight as we reach the crater rim 
The sense of relief finally begins

We're at Stella Point now, not far from the summit 
A gentle climb and then we've done it 
We solider on, weary and tired 
As we continue on up, higher and higher

Then the end is in sight, the infamous sign 
At the top of the mountain a sight so fine 
The last hundred yards and we touch the top 
To answer the question, would we make it or not?

We all take photos and savour the views
Ready to share our fantastic news
But we don't hang around, the air's cold and thin 
And we've another six hours trek to fit in

It's all downhill as we slide down the scree 
Making very fast progress, only stopping for a pee!
We quickly descend and the air gets thicker 
As we breathe in more oxygen we'll no longer get sicker

Just one more camp then the end is our goal 
As we stride on downhill making use of our poles 
We're all in good spirits but weathered and worn 
Some of our kit battered and torn

Then we reach the finish, our mission complete 
To conquer the mountain we all came to meet 
A mountain so tall you won't find another 
Standing proudly alone, she has no big brother

A mountain that became our friend and our foe
Testing our resolve with its beauty on show 
A huge personal challenge that each of us set 
And an experience I'm sure we'll never forget





Monday, 24 October 2016

A Pacifist’s Guide to the War on Cancer-The Yes to Life review!

A Pacifist’s Guide to the War on Cancer – book by Bryony Kimmings and Brian Lobel, music Tom Parkinson.

Dorfman Theatre, opened 19
th 
October.

While it’s certainly not the taboo subject it was a few years ago, it still requires a stretch of the imagination to think of cancer as a great subject for a musical. But with A Pacifist’s Guide to the War on Cancer, Bryony Kimmings has pulled off a coup. Kimmings declares on her website that she is ‘inspired by the taboos, stigmas, anomalies and social injustices around her’ and ‘creates mind-blowing, multi-platform art works to provoke chang
e.’ And she doesn’t pull her punches. All the serious and painful and raw stuff is there on stage at the Dorfman Theatre on the South Bank, but there is irreverence, anger, some good songs, dancing glittery mutant cancers and plenty of laughs too.
 


In this co-production with Complicite Associates, and in association with HOME, Manchester, the Pacifist’s Guide is set in one of those chilly, antiseptic hospital lobbies that we’ve all experienced. There are numerous pairs of swing doors leading from this space – and above each sits a big illuminated ‘EXIT’ sign. Of course all of the cancer patients we meet want to be out of there, but there’s no exit from the reality that each one of them has a cancer diagnosis. One character is in denial about her ovarian cancer, another with lung cancer wants to make amends with his estranged daughter, a third has financial worries and is afraid to tell his employers the truth about his absence from work and a fourth faces the possibility of passing on to her baby her own genetic predisposition to developing cancer. At the centre of this, Emma has a young baby undergoing tests. We follow her journey and struggle through to the searingly painful moment when she accepts the diagnosis.

This could have been the end of the show, but we slip into another gear for the final sequence. As part of this finale. members of the cast name friends and family members who have been diagnosed with cancer, or who have died. Then the audience is invited to do the same. Unexpectedly for such a very British institution, it only takes a couple of seconds for people to start offering up a litany of loved ones’ names. Way beyond poignancy, this simple device has the powerful impact of driving home just how widespread the disease is, that most of us will encounter cancer at some point during our lives and that we will need to find our own ways of dealing with it.

Thursday, 20 October 2016

Why did you get cancer?

Yes To Life chairman and founder Robin Daly talks about his experience of cancer care in the UK and the lack of an integrative approach.



I am a father of someone who had cancer. My daughter, Bryony, died in 2004 when she was 23 after suffering from three highly malignant cancers, starting from when she was nine years old. She is the inspiration for Yes to Life which has helped thousands of people who want to pursue non-conventional approaches which are not currently available on the NHS. We are part of a very large movement, driven by cancer sufferers and their friends and family members, who want to see change.

When Bryony died, we had only just started looking into how alternative therapies and nutritional support might be able to help her. At that time, further conventional treatments including chemotherapy and radiotherapy would have done her more harm than good. The NHS did not have anything to offer, so we started looking at all the alternatives available.  What we found was that there were plenty of options out there, but it was almost impossible to find the really relevant and good quality information amongst the daunting quantity now on the internet. As private medicine, they also were not free.

Sadly, Bryony was not able to benefit. Twelve years after her death, we try to fill that gap for people who want to take a more holistic approach to their cancer care and we provide support, information and in some cases, financial assistance. I have to say that I am enormously disappointed that so little seems to have changed in the NHS when it comes to Integrative Oncology. very few doctors seem ever to ask the question, ‘why did you get cancer?’

Yes, patient demand means that many oncology centres have bolted on complementary therapy centres – typically run by volunteers – which may offer therapies such as massage, mindfulness meditation and acupuncture, but there is no national requirement for this. The Royal London Hospital for Integrated Medicine, part of the University College London Hospitals NHS Foundation Trust, is one of only three NHS centres in the country that takes a broader approach to patient care.

Worryingly, we even seem to have gone backwards when it comes to patent choice and the provision of some therapies. Some Clinical Commissioning Groups now restrict funding for homeopathic treatment. Strong pressure from ‘science-based medicine only’ campaigners has meant that there is a growing reluctance for NHS commissioners to fund anything which can’t be backed up by gold standard clinical trials – appropriate for a new potentially harmful drug but surely not in the case of treatments which are low cost, unprofitable, and which have been used successfully and safely, in some cases for thousands of years. There seems to be a whipped-up sense of grievance against practitioners who make no claims and can certainly do no harm but may be able to help. The requirement for incontrovertible evidence needs to be proportional to the possible downside, and to to respect patient choice wherever possible. Otherwise, we inevitably give the monopoly to wealthy drug companies.

I also find it extraordinary that most cancer patients in the NHS receive little or no help when it comes to lifestyle changes. Advice about diet, exclusively given by pressed-for-time dieticians who are medically qualified, seems to be focused on how very ill people can avoid losing weight by consuming large quantities of sugar and carbohydrates. No attention is paid to nutritional therapy to boost damaged immune systems and improve energy levels. Most cancer patients never even receive exercise advice from a professional. You would think that these things would be basic parts of the care package, but not at all.

No one is saying that conventional treatments should be dismissed – if you are in an acute situation surgery, chemotherapy or radiation can be a good choice. But Integrative Medicine has an important role in helping people stay well during treatment, recover more quickly and avoid relapses.

Monday, 17 October 2016

Pomegranate & Feta Quinoa

For a high protein, wheat-free meal quinoa is a versatile dish which blends beautifully with vegetables. It has a higher protein content than grains and is gluten free. Jenny Phillips specialises in supporting people with cancer through nutrition and has given us a delicious recipe this month!

The pomegranate adds a flash of colour and a boost of phytonutrients for immune health. If you are dairy-free simply do not add the feta.

1 red onion, chopped
2 cloves of garlic,
crushed
1 yellow pepper, sliced
1 can chickpeas,
drained & rinsed
1 tsp cumin
Juice & zest of ½ lemon
2 tbsp olive oil
150g quinoa
380ml water
Seeds of half a
pomegranate
120g feta
Seasoning

1. Preheat the oven to 200 degrees
2. Add the vegetables to a baking dish, add the seeds, cumin, lemon and oil. Roast for 30 minutes and remove from the oven
3. Meanwhile make the quinoa: add the quinoa and water to a pan. Season. Bring to the boil and simmer for 15 minutes then remove from the heat.
4. Stir the quinoa into the chick peas and check the seasoning.
5. Top with the pomegranate seeds and crumbled feta.

Thursday, 8 September 2016

Combining approaches for lung cancer

Today's blog is from Suzanne*,66, from Cornwall who writes about her experiences putting together a integrative plan following her diagnosis with Lung Cancer in 2012.

When I was first told I had cancer my heart sunk like a stone. This information was given to me by GP who also told me I could cough, haemorrhage and die (!) I met a friend and we went straight to the pub for a glass of wine, followed by shock and tears.

I had no symptoms prior to coughing up blood, but soon developed excess sputum and coughing, although no breathlessness. Lung cancer was confirmed with a CT scan, MRI scan and bronchoscopy, all arranged at two weekly intervals and I was finally diagnosed in June 2012.

The consultant thought the tumour could be removed with surgery; I was thrilled and saw this as a cure. I couldn’t wait for the operation which happened in August 2012 but unfortunately the thoracotomy failed as I had cancerous nodules.