We would like to invite you to the Oral and Oesophageal EU research programme Annual Meeting which is being held on Monday 16th April in Belfast.
Across Europe, there is a network of 4 universities and 8 companies who are carrying out research into oral and oesophageal cancer. There are 11 PhD students working across Europe who will be coming together for the annual meeting and would be delighted to present their work and hear your thoughts.
To view the schedule of the day, click here.
If you would like to attend please email OPANorthernIreland@gmail.com.
Due to unforeseen circumstances, we have had to postpone our upcoming Oesophacycle event.
The rescheduled date is TBC. Please keep an eye on our Website and Social Media platforms for further updates.
All applicants should now have been contacted directly. Please check your emails if you have not yet heard from us or contact OPANorthernIreland@gmail.com if you have any questions.
It was great to see a packed audience on Saturday for our Spring 2018 Wellbeing Meeting! We hope you found it as insightful as we did.
We would like to extend a big thank you to all of our attendees and guest speakers, Naomi McCay, Sharon McCaughey, Julie Hanna and Dr Inder Mainie who joined us for the meeting.
If you couldn't make the event, or would like to download the guest speakers presentations, please see below:
Sharon McCaughey - Optimising Nutrition Post Surgery - Download here.
Naomi McCay - Returning to Work after a Cancer Diagnosis. - Download here.
Julie Hanna - The role of Clinical Nurse Specialists - Download here.
Our next Wellbeing meeting is scheduled for September 29th 2018. We hope to see you there.
Please note that our next OPANI Wellbeing conference is on:
Date: Saturday 24th March 2018
Time: 10.30 - 13.00
Location: Beechlawn House Hotel, Dunmurry, BT17 9RR
Speaker: Sharon McGaughey – Specialist Dietician, Belfast Trust
Speaker: Naomi McCay – Macmillan Work Support & Vocational Rehabilitation Unit
We are delighted to be joined by Sharon McGaughey, Specialist Dietician at Belfast Health & Social Care Trust who will be chatting about diet and nutrition post-surgery.
We will also be joined by Naomi McCay, Project Manager from Macmillan who will be talking to us about returning to work after cancer treatment.
Thanks to the roaring success of our Oesophacycle Castle to Castle Challenge last summer, Dr. Inder Mainie will be updating us on the great strides taken to bring the new ESD procedure to Belfast. The Japanese specialist, Dr Kuwai, who trained Dr Mainie will visit the City Hospital in May.
OPANI Committee Member Lorraine Pinkerton will be asking you to either volunteer with the OPANI to participate in events, or to host your own events for our exciting 2018 campaign. We are also hoping that Julie Hannah will chat to us about the role of a Cancer Nurse Specialist.
We will be providing a light lunch after the event to give everyone plenty of time to mingle, ask questions, give and receive advice and make new friends. As ever, if there are any questions you would like to submit in advance, please call or email Valerie (details below).
We understand that many patients and carers live some distance from the venue and we have done our best to come to an arrangement with the hotel. Discounted rates are available by contacting Beechlawn reception on 028 9060 2100 and telling them you are an OPA (N.I) member.
To allow for numbers for the catering, please confirm your attendance at the meeting by telephone to Valerie on 028 9020 8602 or by email to email@example.com
The OPANI are looking forward to taking part in the upcoming CCRCB Open Day on 17th February 2018!
This is a great opportunity to hear about ground breaking research currently being undertaken in the centre. Our team will be manning a stand in the foyer throughout the day and will be on hand for any questions you may have.
Please come along and join us as we celebrate a decade of advances in cancer research in Belfast!
To see the programme for the day, click here.
We hope to see you there.
Speaker: Professor Tim Underwood, Professor of Gastrointestinal Surgery at Southampton University
Speaker: Mairead McAloon, Occupational Therapist, Northern Ireland Cancer Centre
Our keynote speaker, Professor Tim Underwood is Professor of Gastrointestinal surgery at the University of Southampton. He trained in London and the Wessex region before completing a PhD in molecular biology and taking up a National Institute for Health Research Clinical Lectureship in surgery in 2008.
In 2011, Prof Underwood was awarded a Medical Research Council (MRC) Clinician Scientist Fellowship, and in the same year he was awarded the Association of Surgeons of Great Britain and Ireland prize and gold medal for outstanding performance in general surgery.
He became a Cancer Research UK & Royal College of Surgeons of England Advanced Clinician Scientist Fellow in April 2017. Prof Underwood leads the multidisciplinary team for upper gastrointestinal (GI) cancers, treating the full range of benign and emergency GI conditions.
In addition to his cancer practice, Prof Underwood has a special interest in surgery for complex hiatus hernias and anti-reflux procedures. He has given invited expert lectures on new techniques for anti-reflux surgery.
We are also delighted to be joined by Mairead McAloon, Occupational Therapist in the NI Cancer Centre. Mairead has been working as an Occupational Therapist for the past 10 years and is involved with the Macmillan MDT fatigue programme and will be speaking to us on Managing Cancer-related Fatigue.
It has been a busy and exciting year since last we met, so we will be updating you on all our activities, as well as keeping you informed about upcoming projects and fundraising events.
As ever, there will be plenty of time for a chat over a cup of tea or coffee, and a question & answer session for you to make the most of having our healthcare professionals in the room.
If there are any questions you would like to submit in advance, please call Helen on 07776 152275 or email at firstname.lastname@example.org
We understand that many patients and carers live some distance from the venue, and we have done our best to come to an arrangement with the hotel. Discounted rates are available by contacting Beechlawn reception on 028 9060 2100 and telling them you are an OPA(NI) member.
To allow for adequate catering, please can you confirm your attendance by telephoning the OPA(NI) Secretary, Valerie Osborne, on 028 9020 8602 or by email to email@example.com
Our popular Table Quiz will take place on Friday 20th October 2017 in the Wellington Park Hotel, Malone Road, Belfast at 8pm.
Admission £5 including supper.
The Quiet Room, in memory of Rev Roy McMullan, the founder of the OPANI.
The room was opened by Mrs Diane McMullan on 5th August 2016. It is fully equipped to provide comfort and relaxation well away from the busy ward environment.
The room will also offer patients and carers a quiet space where they will be able to gather their thoughts and take in information at a critical time in their lives.
A few photographs of the speakers from last week. Huge thanks to Dr Inder Mainie for a fantastic (and accessible) update on the latest Gastro news. I think more than a few of us were astounded at the progress Dr Mainie in particular has been making.
Thanks also to Ward Sister Donna Marie O'Neill for chatting to us about our plans for a refurbishment of a quiet room at the hospital in honour of our founder, Roy McMullan. Thanks also to Michael Whitford who told us of his gastro journey over the last few years.
And also thanks to Julie Hanna and Louise Collins for braving the microphone.
If you don't know what it is, have a read of this anonymised post from a Northern Irish sufferer.
My Life with Achalasia
A little bit about me – I am a 38 year old married male with 2 young children living in a little place called Northern Ireland. I have up until now lead an active lifestyle playing Rugby for most of my adult life but now eventually hung the boots up so my fitness is going and I am putting on a bit of weight. (still not in bad shape though ha)
Looking back I can only ever remember that whatever I had to eat seemed to stick in my throat but up until October 2007 I actually thought that this was normal and how everybody felt when they ate. However if I had a good drink with my meals they seemed to go down ok and I had no real problems. (Occasionally I did suffer from bad bouts of painful heartburn/indigestion but that was about it and other than that I seemed to be in general good health)
Then in October 2007 my life started to change forever. I started to notice that all food/liquids were sticking after I had consumed them. So much so that I would take on the appearance of a character from a sci-fi movie in that I felt my eyes water and bulge out of my head and I would contort and move about just to get the food down and get a bit of relief. However you do have to eat so this would happen quite a few times daily.
At this time I started to get recurrent and painful heart burn. I went to my local GP and explained my symptoms and I was told the heartburn may have inflamed my oesophagus casing a slight stricture hence my difficulty in swallowing. I was prescribed a course of Lansoprasol.
I started the medication and my heartburn disappeared but the problem in swallowing continued, so in Late November I returned to the GP and was told to double up my dose of Lansoprasol.
CONDITION UPDATE: - In December 2007 my condition got worse. I now found myself not only struggling with eating every meal but I started to wake numerous times in bed during the night with coughing fits. During the coughing I would bring up food particles into my mouth. The coughing got so bad that I had to move out of the bed I shared with my wife and into the spare room so at least she could get some sleep.
In January 2008 I again returned to my GP and explained the latest conditions and I asked him if I could be referred to a specialist. Luckily for me I have private Health care so my GP gave me the name of a Consultant and a letter of introduction.
I got an appointment with a Specialist in February 2008 and explained my symptoms and felt that something extremely sinister was happening in my body with visions of cancer becoming more evident. This was because I had tried to self diagnose myself on the internet typing in ‘difficulty when swallowing’ and everything seemed to indicate I had cancer. The Specialist tried to dispel any fears of cancer and he said the best route would be a series of tests starting with an endoscope examination of my esophagus.
CONDITION UPDATE: - By now I found that if I coughed hard enough my mouth would fill with ‘Gloop’ – this is my self made medical term for what I can only describe as a thick sticky substance made from my own body’s saliva and mucus taking the appearance of a clear gunge. On occasions I found myself in public and taking a coughing fit resulting in the gloop making an appearance - now on a good day with not to many people around I could just spit it out discretely but on a bad day when people were about I had to swallow it again. ‘Gloop’ also started to make regular visits when I was in bed trying to sleep.
In March 2008 I got a date for my endoscope examination. I arrived at the clinic and was brought to a theatre room where I met with my Consultant. He explained the examination procedure and I was asked if I wanted a full general anaesthetic or a local throat anaesthetic. I choose the local so was fully awake during the procedure (an option I would still choose). The anaesthetic tasted of rotten bananas a taste I actually liked reminding me of a strong shot of spirits you would get on a night out. A few minutes later and my throat went numb making swallowing even worse but not in a way you can’t handle. The endoscope was inserted into my throat and I felt it move down my oesophagus and into my stomach. There was actually no pain involved in the procedure just a slight uncomfortable feeling when the endoscope pushes air into the cavities so the consultant can see about. 2 minutes later it was all over and I looked at the Consultant with worry asking him did I have cancer. He told me he could see no evidence of cancer but that my oesophagus was grossly dilated with a large amount of food debris indicating I might have a problem with my lower oesophageal sphincter muscle. He said he had a good idea of what my problem was but further tests would be needed to confirm his suspicions.
At this point and based on what I was told I again checked the internet and this is when I first became aware of the condition ‘Achalasia’.
I got my further test date early August 2008 and this was for an oesophageal manometry and 24 hour PH level test. The entire procedure was conducted by a trained nurse who I must say was very good at explaining the procedure and again a local anaesthetic (the rotten banana one) was used this time it was sprayed into the back of my nose. (Be prepared it is as if someone just punched you on the nose). Again any pain only lasts seconds so it is not something you can’t handle. The procedure involved a thin wire being fed through the nose down the oesophagus into the top of the stomach. It is done to measure the muscle strength of the oesophagus when you swallow. My results were bad showing no muscle strength at all and my lower sphincter was so tight the nurse couldn’t manage to get the mamometry wire passed it. She off the record informed me it looked as if I had ‘Achalasia’
CONDITION UPDATE: - Since my endoscope procedure until the date of the manometry test my condition had got a lot worse. I could feel any food now that I ate sticking in the oesophagus queueing up and not passing into the stomach at all. As well as the ‘gloop’ appearances I now found my entire meals coming up I had lost over 20lbs in weight (all without any form of training). I was getting little or no sleep at all so was walking around like a zombie most days feeling terrible and dreading meal times. Because of the constant tiredness you become lethargic and everything seems to be a chore so depression starts to kick in and you automatically enter the why me feeling sorry for yourself mood.
In mid September 2008 my Consultant received my tests results and I met with him for my official diagnosis so I now had ‘Achalasia’. The Consultant was a specialist in Laparoscopic Surgery and he told me although my condition will never be cured it can be treated to greatly improve my lifestyle by Hellers Myotomy with Fundoplication and it would be his advice to go straight to surgery. To be really honest if the consultant had said he could do the op immediately I would have got up on his office table there and then but a date for the 18th of November 2008 was made.
CONDITION UPDATE: - from the last consultation up until my Operation date my condition deteriorated drastically losing now I had lost 28 Lbs in weight. I actually after every meal would go to the toilet and make myself cough dislodging any food in my oesophagus which on looking at it was a cross between Achalasia and bulimia.
OPERATION: - I was admitted to the Hospital the day before my surgery where I was spoken to by the anaesthetist and he briefed me about the entire procedure. Samples of my blood were taken for testing etc and I was settled down with some medication to try and calm my nerves. I did try to sleep but must admit this was a very difficult thing to do. My Operation was scheduled for 11:00 am on the 18th so not only was I in the Hospital overnight but I had most of the morning to wait as well. This time was hard and a lot goes through the mind I guess fear of the unknown as I had no form of surgical procedure in my life up until this point.
The day after Surgery: - I woke early again with discomfort not pain and was able to get out of bed and get up on my feet. I went to the bathroom and washed myself then back into bed. My Consultant and Anaesthetist both came to see me at separate times and they informed me of their findings during the operation. I was told that on endoscope examination they found a huge amount of old and decaying food around the lower muscle that was starting to adhere to my oesophagus wall. So not only was my lower muscle tight and nearly closed but the food was causing an obstruction as well. They removed the food and cleaned the area. The Hellers Myotomy and fundoplication went exactly as the Consultant planned and overall they were extremely pleased with how it all went.
All in all I spent a total of 4 days in Hospital and have walked out the door a new man. I was even able to walk to nearby shops on my own and buy chocolates for the nursing staff and when my wife collected me we went shopping and I had a cup of coffee whilst out. Again I was in discomfort but absolutely no pain when walking about.
So now the aftermath.
It has only been 6 days since my operation and my Consultant has even told me to start food experimentation and I have had Toast and ham sandwiches (wow bread that I haven’t had for about 5 or 6 months) but I have mostly been very good taking sloppy foods but everything so far has sailed down into my stomach. I do however think mentally that this is too good to be true and I am waiting for the old feeling to come back again but I am just thankful for what I have now and will just live for the moment. I haven’t coughed at night at all and have had full sleep which is another wonderful feeling.
I am not so stupid as to think that I have been cured as we all know there is no cure for achalasia but what I can say is that I have been helped to a degree that will change my life completely. I don’t know how long this will last for and I am aware it can come back again but on the other hand it might well just last me a lifetime. I am also all too aware that my swallowing will never be that of a normal person but please let me tell you that at the minute it’s not too far of it and being honest it is the best I have swallowed in my entire life.
I cannot stress enough to anyone out there who has this condition and who is frightened, depressed, and suffering that whilst there is no cure there is excellent treatment available to help elevate the symptoms so that you can get back to a normal life. My Consultant informed me that the best treatment for me and my particular case was the Laparoscopic Surgery and I can say so far it is turning my life around completely. I can promise you if you are trying to make your mind up about this form of treatment that there is little pain involved more discomfort than anything else and it is probably less discomfort that you are feeling without being treated.