A Tribute to Nesta Wade

My mum was a hard working loveable and caring person and nothing deterred her right up to the last admission into hospital.

In August 2012, mum was diagnosed with breast cancer quickly followed by a left mastectomy soon after.  She started her 6 cycle chemotherapy treatment in september which would be followed by herceptin.  As soon as mums first cycle of FEC started, mum experienced breathing difficulties and was admitted into hospital and treated for infections, this was ongoing after every cycle of chemo. After 2 cycles of FEC, her oncologists changed her treatment to Docetaxel as it was believed it was affecting her heart function and where her breathing difficulties lied. During this time, mum was being checked out by the cardiologists having echos, X-rays, CT scans and a lot of antibiotics for infections in her lungs.

Eventually, mum was referred to a lung specialist in October 2012 where, in December 2012, after lung function tests and a biopsy, she was diagnosed with early institual lung disease, believed to be caused by chemotherapy.

Four weeks after her lung biopsy in February where she was sent home with no oxygen, 80% sats and low blood gasses, mum was rushed into hospital and put on life support. She fought for 4 1/2 weeks overcoming all the hurdles that was put in front of her!

Unfortunately, mums lungs never recovered and she passed away on 2nd April 2013. We were told that her fibrosis had progressed aggressively whilst she was on life support and she had died of multiple organ failure, severe septic shock, chest sepsis and progressive interstitial lung disease.

This disease is by far the most misunderstood and unforgiving and needs all the funds possible. I still do not understand how something so devastating has no help or cure.

My mum was a diamond and would help anyone and everyone. It kills me that nothing could help her.

Tribute written by Toni Pym, youngest daughter of Nesta Wade

Grandmother, great grand mother, sister, mother, cousin, niece, aunt and everybody’s friend xxx

A Second Chance at 48

By David Kenningham
 
I think I have always been lucky. The harder I worked the luckier I got, always in the right place at the right time. However, nothing in my past compared to this. 
 
It was just an ordinary day, not unlike the thousands that had preceded it. I was busy, I was always busy and would have it no other way. I wasn’t stressed any more than usual as I made my way along Grosvenor Street to meet some Middle Eastern clients to pitch for work on their newly acquired Central London property. I thought I had the job anyway and this was a formality, but still my colleague and I were taking no chances. I rang my colleague to say I was on my way, I had all the documents and would be there in 10 minutes. I never made it.
 
I woke up two days later, I think – it’s still a little hazy.I was in the Heart Hospital, having had a cardiac arrest as I walked down the street.
 
As I decided to fall over unconscious as my heart stopped, 2 paramedics sitting in their truck on the other side of the road witnessed my collapse. These unnamed saviours reached me, I guess pretty quickly, and understood instantly what was happening. From the state of my suit and the shirt I was wearing at the time, they took no prisoners, not that I’m complaining! I keep the suit and shirt as a reminder, a warning about a previous life.
 
I’ve been asked since what did I see, was there a great light, did I have an out of body experience? I’m not sure how I missed the opportunity to tell a few tall tales, but the fact is I remember nothing. My memory of that day and the previous day together with my first few days in hospital is pretty much a blank.
 
A few volts of electricity later, my heart was at least beating enough to get me to the hospital. I understand the paramedics had just finished another call out and were either having a well earned cup of coffee or waiting to be told where to go next. Either way, I wouldn’t be here now if they weren’t there – a debt I can never repay.
 
I like to think I’ve looked after myself. I love the gym – a place to escape the stresses of the day and dream of past glories. I made it once or twice a week always struggling to find the time but somehow managing to. I was in reasonably good shape, you can always be better, enjoyed a drink – now much more sensibly than my youth and according to my friends was not somebody likely to have a cardiac arrest.
 
The reality is I think I had the easy part of my illness. My wife had assumed I was stuck on the underground when the office rang to nervously ask if she had heard from me. It wasn’t until she arrived home from the school run and found a police car waiting for our outside the house that she began to to worry. Somehow she kept it together, with a son of 11 who had just started a new school and a daughter of eight she had to.
 
It is in situations like this where friends come into their own. The support that she received from our close friends was nothing short of awe-inspiring. Everybody in London is always so busy. All our friends were busy, but somehow they found the time to help in ways both big and small. Interrupting well honed routines to take our children up from the school or from the coach to provide tea for them, to drive my wife to and from hospital, to sit with her and support her – the list is endless. It helped my wife maintain a degree of normality with the children until such time as she knew my prognosis and ultimately that I was going to make a full recovery.
 
What was I doing during this time? It’s hard to say, as I said earlier it all a little hazy, but apparently the hospital got my heart to stabilise, I was chilled down in ice – something I wasn’t desperately pleased about from my body’s reactions according to those who witnessed it  and I was monitored to within an inch of my life!
 
When I woke, I genuinely had no idea why I was in hospital. On the surface I felt fine. I muttered to my very relieved wife that it was only a bit of indigestion and tried to get out of bed. An act painfully restricted  by the wires attached to me and the catheter!
 
After this, my next thought was to get my blackberry – how on earth were work surviving without me? The fact that my brain was so scrambled I couldn’t remember my fairly simple password should have told me that I perhaps was not 100%, but my desire to resume ”normality” was too great. A game of cat and mouse ensued with me asking each new nurse who came into my room for my blackberry and then trying to extract the password from colleagues or remember it myself. It took a fairly stern text message from the head of HR for me to stop – he somehow knew that I would be checking my messages!
 
It was only then that I started to accept that possibly I had been ill!
 
After testing, having a defibrilator fitted (my new toy), and celebrating my 49th birthday from my hospital bed, I left hospital 2 weeks later with instructions to take it easy and a bag of pills to make sure I did! 
 
My diagnosis of cardiac sarcoidosis was unusual but not unknown. Those first six weeks at home were probably, in hindsight, the hardest. Struggling to come to terms with being ill, struggling to get my body to respond as I wanted it to. Each day, I was sent to bed in the afternoon for a “rest”, each day I was determined not to sleep only to be woken some 2-3 hours later. I took to emailing my consultants at the Heart Hospital with lots of questions. Judging by the replies, this was not normal practice!! 
 
Slowly but surely I accepted the situation, started to trust others and listened to what I was being told even if I didn’t like what I heard. My six week check up went well and I was allowed to resume gentle exercise. It was little things that I noticed.  I registered the look of delight/surprise/pleasure, I’m not sure which, on the face of my consultant (Dr Pantazis) as I bounced down the steps to see him.  He had obviously seen me at my worst and was relishing my recovery. Although my request to play a final game of rugby where I promised to avoid taking any “big hits” on my left side where my defibrillator was inserted, must have made him wonder what sort of idiot he had helped save!
 
I returned to work slowly in mid January, chased from the office by my PA at lunchtime.
 
I returned to UCLH  on a regular basis. It almost felt like home. I became a big fan of all things NHS as the various departments linked to help put me back together. Not that unusual I suspect for anybody in my situation, but all the same impressive and help that was gratefully received.
 
Telling people that you had a cardiac arrest in the middle of the West End gets an assortment of reactions depending on who you tell. Non-medical people hear cardiac arrest and think heart attack.  Medical people just tended to look at me strangely.
 
For me, the healing process took a giant leap forward on one of my early visits to see Dr Jo Porter. I arrived at the clinic early, I think I was first in and it was quite quiet. I got talking to one of the nurses – I wish I could remember her name – and she asked me the usual, what happened to me why I was here etc. She expressed her amazement and I had the opportunity of asking her what was so unusual. The reply was that out of hospital cardiac arrests have a poor survival rate. I was listening and I remembered and carried around this information for some time. I have no doubt I was told before, but this was the time that I remembered.  I’m not sure what it was, but her reaction really stuck with me.
 
A few days or weeks later, I googled “ cardiac arrest survival rates”.  While survival rates are increasing, it does not make good reading.
 
I think I’ve always been lucky.
 
What have I learnt from all this. There is lots of stuff that I should have known, but probably didn’t appreciate or think about.
 
-my care at the Heart Hospital/UCLH where I recovered, was tested, prodded and probed was fantastic.  I doubt it could be bettered. The nurses, doctors, consultants were my life savers; friendly, cheerful and helpful. At times, I was amazed at how rude and ungrateful some patients were. I think they thought it was an hotel! The staff had patience I know that I would never have!
 
- I always felt I made time for my family, but the reality was that my the work/life balance was not as balanced as I thought! My family are my life, but somehow work had won that battle without me realising it! 
 
-friends are irreplaceable. In moments of crisis, you understand and learn the real definition of friendship.  They continued the good work started by the hospital.
 
I write this while on “gardening leave”, having resigned from my job in October after 24 years. I am starting my own practice to enable me to control my work life balance. I will still be working hard, as I love what I do. I will still be as committed as ever for my clients, but will be working on my terms and with the support and understanding of my family.
 
It is a new beginning. I see it as a second life. A life that was restarted on the pavement of a Mayfair street on 27 September 2011.
 
Life 1 – 48 years 11 months.
 
Life 2 – 17 months and counting!!!
 
 
 

A Tribute to Mark Hulme

By Sheila Hulme, Mark’s wife:

Mark, my husband, died from Pulmonary Fibrosis last year, sadly I had not heard of this dreadful disease until Mark was diagnosed with it 7 years ago. Within weeks of diagnosis, he became increasingly ill and became more dependant on oxygen as his lungs ceased to function properly.  He knew it was a terminal disease, but typical of Mark he handled it with great dignity and courage.

As the years passed by, he became more breathless and limited in his mobility. He ended up being on oxygen 24 hours a day and virtually housebound.

Mark was a man with a huge zest for life and to see that gradually ebb away, day by day, was devastating for me and the family. Everyone who knew him will always remember his wonderful sense of humour and he just lived to laugh; sadly, in the end, he could not  even laugh as it just took too much out of him.

I am desperate to raise the awareness of Pulmonary Fibrosis by supporting the charity Breathing Matters. This charity helps to fund  University College London which is one of the leading  research establishments trying to find a cure for Pulmonary Fibrosis.

How can you help? I have assembled a team who intend to walk the South Downs Way which is 100 miles long and will take us 6 gruelling days, believe me when I say gruelling! It is a tough one as we are busy training on the Downs in preparation for the walk on 4th May 2013.

WE NEED YOUR SPONSORSHIP TO HELP UCL TO CONTINUE THEIR RESEARCH SO OTHERS DO NOT HAVE TO SUFFER AS MARK DID.

Who are the team? Myself, his elder brother PJ, his two cousins Jeremy and Crispen, his brother-in-law Harvey and his good friend Matt.

The walk itself will start in Winchester and will be over 6 consecutive legs ending in Eastbourne. We would welcome anyone that wants to join us on any of the legs. I will let you know at a later date where we will be starting each day and where we will be staying.

Please, please help if you can – http://www.justgiving.com/PeterHulme

Thank you.

A Tribute to Molly Brear

Tribute by her daughter, Louise Lowrie

My mum Molly was born in Leeds and moved to Doncaster as a small child. She met my dad, Laurence, at work. He was “the love of her life” and they were happily married for 45 years. Family meant a lot to my mum, as an only child herself, she used to dream of having brothers and sisters; therefore, when my brother was born, she made sure that 2 and a 1/2 years later he had a sibling (me).

My mum’s favourite role was being a grandma, she had 3 grandchildren who she loved deeply.

My mum had several challenges in her life, the first one being bowel cancer which she beat with fearless determination.A few years later, she nursed my dad through a difficult illness which we believed to be pulmonary fibrosis at the time but shortly after he died we found out was  pulmonary amyloidosis. Mum struggled with the loss of my dad, but got through this time with her faith in God and the support of her friends at church.

Mum’s biggest challenge came in October 2012. She had noticed slight breathlessness when going upstairs for a few months then she became acutely unwell with what we thought was a flu-like illness.  Three weeks later, we got the news we didn’t want to hear - she had pulmonary fibrosis. My mum stayed strong and decided to make the most of the time she had left. She had unbelievable support from her friends and neighbours and we planned to have a fun family Christmas  as we didn’t know if it would be her last. Sadly, it wasn’t  meant to be, as mum deteriorated rapidly and spent Christmas in hospital where she died on December 27th 2012. She had only been unwell for 10 weeks. My mum stayed strong right until the end and was adamant she wasn’t going to “spoil” Christmas for the grandchildren.

We miss her so much. Pulmonary fibrosis is a cruel and devastating disease, please donate to help fund research into it.

A Tribute to David Dainty

David J Dainty 07.06.39 – 03.07.12 

By Keith Millman MBE

David Dainty was a committed general dental practitioner practising amongst likeminded colleagues who were prepared to offer ‘out of hours’ services to patients in need.

He was born in Letchworth, Hertfordshire moving with his parents to Stanford-le-Hope where he attended Palmers Boy’s School in Grays.  He pursued dental studies at the London Hospital Dental School where he qualified in 1963.  Always a keen sportsman, he played football and water polo for his dental school and proudly boasted that he was an ‘Old Londoner’.

After qualifying, he practised as an assistant for a short while in Essex.  Coming to Devonshire in 1964, he was welcomed into a Kingsbridge family practice where he quickly established himself with kindly demeanour.  David remained in this practice, eventually becoming a partner, always pursuing postgraduate studies until his retirement as senior partner in 2005.

An active member of the BDA since qualifying, he joined the Plymouth Section and became Chairman 1976-1977.  He became the second Editor of the Branch magazine Contact Point and was elected President of the Western Counties Branch in 1987.  He was also on the editing board of Dental Update.

As a young man, he joined Round Table and later the 41 Club.  On the foundation of the Kingsbridge Estuary Rotary Club, he was invited to join and worked in several offices.  During their 25th year celebrations, he was honoured to be elected as their President and awarded the accolade of a Paul Harris Fellowship for services to the Rotary Movement.  Closer to home, he was a governor of West Alvington primary school, a parish councillor and a stalwart of the Anglican Church, where he was joint treasurer.

David loved his golf and retirement gave him the opportunity to pursue this interest after a hard working life looking after his patients.  He was diagnosed with pulmonary fibrosis two years ago.

West Alvington Parish Church was full to overflowing for David’s funeral service.  Colleagues, former patients and friends were standing along both side aisles.  Those unable to gain access to the interior were able to participate through a pre-installed public address system outside.

He leaves his devoted wife Hilary after a happily married life of 49 years, three daughters and seven grandchildren to whom we extend our sincere sympathies.

The family are very grateful to everyone who attended David’s funeral and gave so generously enabling his family to donate £2000 to Breathing Matters, and also his former partner and close friend Keith Millman MBE for allowing us to use his very fitting tribute to a much loved husband, father, granddad and friend.

 

Tractor Run; a First for Breathing Matters

Pengegin Presentation

Pengegin Presentation

Andrea Reed, Head of a fundraising group called “The Gwaun Valley Dragons” organised a Tractor Run this summer in memory of Mr Oswald Harries of Pengegin Farm, Gwaun Valley, who sadly passed away last year of “Farmer’s Lung”.  Oswald’s family had kindly requested that the money be donated to Breathing Matters.

Almost 100 tractors turned up for the Tractor Run on an amazingly sunny day.  Oswald’s grandson started the Run in his tractor and 98 tractors followed him along the scenic Gwaun Valley in Wales.  See the below link for photos of the day.

On 8th September 2012, a cheque for £3,200 was presented by the Gwaun Valley Dragons to the Oswald family on behalf of Breathing Matters.

We would like to thank the Oswald family for donating this money to Breathing Matters towards research into Farmer’s Lung.  Thank you too to the Gwaun Valley Dragons for organising such a fun event. 

Click here to see more photos from the Tractor Run

Click here for more information on Farmer’s Lung

 

 
 

A 1000 Mile Cycle for Lawrence Matz

Peter with Lawrence

Incredibly, it has been a year since Breathing Matters’ dear friend Lawrence Matz lost his battle with IPF.

On Thursday, 27th September 2012, his best friend, Peter Tenenbaum, is cycling from London to Barcelona in his memory and to fundraise for Breathing Matters. 

This hard slog will take Peter two weeks to complete and will cover some of the roughest terrain in Europe, including climbing the Pyrenees.  This is Peter’s own Tour de France, or should we say Tour de Force!

For information on the route Peter is taking, visit http://www.the-life-cycle.co.uk/london_barcelona_bike_ride_route.htm

If you would like to support Peter in this amazing challenge, visit http://www.justgiving.com/lawrencematz

Thank you Peter.  Good luck with the challenge!

 

A Tribute to Ken Seddon

Kenneth ‘Ken’ Seddon was born on 2nd June 1934 in St Helens to Henry and Harriet Seddon. Ken had been diagnosed with Idiopathic Pulmonary Fibrosis and following a short illness with pneumonia, sadly passed away on 16th July 2012.

Ken was a proud family man and a true gentleman, who loved his dear wife Rita, was a fantastic dad to his daughter, Julie, and a devoted grandad to Samantha and David.  Family life was very important to Ken and he loved his regular contact with his brothers Brian and Harry and sisters Frances and Joan. 

Rita was Ken’s first and only love.  They met at a dance and soon they were courting and, when Ken eventually left the Army, they were married – and went on to have their daughter, Julie.  Their family home was in Haydock and they were blessed to have many happy times there and also have lovely neighbours who remained very supportive during Ken’s last days.

When Julie was around 14 or 15 and a little more independent, Ken and Rita joined St Helen’s Rambling Club and a new phase of their lives commenced. Never being a man to do things by halves, Ken was soon involved in all aspects of the club – he has led uncountable numbers of walks – arranged holidays for the club – and became treasurer for many years too. Ken has made very many friends through the Rambling Club: people like Jim and Evelyn, Pat and Geoff  and Linda … who shared a particularly special friendship with Ken. Sadly, in his final year, Ken had to stop walking due to his illness but still took great delight in telling his loyal rambling friends which were the best routes and where free parking could be found!

We have been able to collect £465 to contribute to the research at UCL into this respiratory disease and would like to take this opportunity to thank all Ken’s family and friends who so kindly donated. We hope that the continuing research will soon be able to help others with similar conditions.

We all miss Ken so very much and know that friends and family alike are saddened at the passing of a true gentleman. We hope he can now find peace and happiness back with Rita strolling along together in the Lake District.

Tribute by Gary Crossley.

Breathing Matters Golf Day – a Fitting Tribute to Graham Smith

Graham Smith was diagnosed with bronchiectasis at the tender age of 5 years old and was told there was no cure.  Professor Pilcher, a lung surgeon at UCH, wanted to help Graham and, even though he had never operated on a child before, was willing to try and remove the diseased lobes.  At aged 7, the first lower lobe was removed, and a year later, the other lower lobe was removed.  The surgery worked.  Professor Pilcher saw Graham every year until he retired.

Graham was fine for years, playing golf and tennis.  However, his chest infections increased with age, he had pneumonia twice and he was told that cells from the original disease had returned.  Graham sadly passed away on 13th February 2011, aged 74 years.

Graham had told his wife, Rosemary, that he would like to leave money to respiratory research at UCH as he was always grateful that Professor Pilcher’s research gave him a wonderful life and a family to love.

As a fitting tribute to Graham, Rosemary and her family and friends organised a wonderful day of golf on Thursday, 24th May 2012, on Graham’s birthday.

Over 50 golfers attended the day and a further 20 came to support them and join in the prize-giving buffet afterwards.  Mini-fundraising events during the day included a putting competition, a sweepstake on the winning score, a raffle and an auction.

To top all this, Graham had been an avid Arsenal supporter since 1947 and they were lucky to have the former Arsenal goalkeeper and broadcaster, Bob Wilson, playing golf alongside Graham’s friends and family.

Dr Jeremy Brown from Breathing Matters came along to present the prizes to the winners.

Rosemary and her family raised a massive £1743 on the day, which raises their total fundraising for Breathing Matters throughout the last year to over £3000!

Dr Brown says, “We are delighted that this money will help us begin to look at gene activity in patients with different types of bronchiectasis; this will help identify markers for patients with poorly controlled disease and for some of the specific causes of bronchiectasis.”.

Breathing Matters would like to send a massive thank you to Rosemary and family for organising such an amazing, worthwhile day, and to everyone who came along to play golf in memory of Graham.

A Tribute to Dorothy Parkinson

By Dorothy’s daugher, Janice Fletcher

Dorothy Parkinson (nee Bell) was born in August 1930 in Salford to Ethel and Walter Bell and died on 11th May 2012 with her loving family by her side.   A devoted loving, hard working and loved dear wife to Ive (Ivor), mum to Janice and Ken, nan to Clare and Drew and loving aunty, sister-in-law and friend to all.  

Dot was diagnosed with rheumatoid arthritis many years ago and later with Sjogrens’s syndrome also known as Mikulicz disease and Sicca syndrome, a systemic autoimmune disease in which immune cells attack and destroy the exocrine glands that produce tears and saliva.  She also suffered with mixed connective tissue disease, emphysema, asbestosis, pulmonary fibrosis and pulmonary hypertension.  

In 2003, she wasn’t feeling too good and, as usual, thought she would ‘wash the car’ to try and work off her feeling unwell.  She suffered a severe heart attack and had a stent operation shortly afterwards.  More recently in April 2012, even though she was now virtually house bound, she was feeling unwell again and after being admitted to hospital she had suffered a pulmonary embolism.

During her last few weeks, she suffered two severe nose bleeds due to her medication and was hospitalised.  Her final days that remained we watched her deteriorate rapidly; it was so incredibly quick.  We found out that her blood was seriously thin and she was taken into hospital where we were told she was a very poorly lady; she had a kidney infection, she had pneumonia, oedema and, finally, she lost her battle to stay with us.

During all this endurance, she fought so bravely and courageously with dignity and fight to overcome her illnesses. Her breathing which had prevented her from having a quality life for her last twelve months was a huge battle in itself, but throughout all of these illnesses, her fun-loving determined, caring, loving character would shine through, even in her last conscious hours.  

God Bless you mum.  We will love and miss you forever!   You will be always in our thoughts, sleep peacefully xxxxx

If you read Dot’s story, please help and donate as much or as little as you can, we need to know more about this awful debilitating disease.  http://www.justgiving.com/DorothyParkinson