My name is Sidney Terence Moy (Sid), I am 78 years of age at the time of writing. I am a retired engineer having largely spent my career in the construction industry working on some of the country’s largest infrastructure projects in a variety of positions, latterly as Project Director on Nuclear Power Stations and Nuclear Reprocessing Plants in the UK and with a few excursions to France, Germany and the USA. I have always tried to keep myself as fit as my problematic hip joints permitted. Following my retirement and until prevented by my illness, I worked out at the gym some 3 times a week, walked the fells, swam (one mile sponsored swim raised £1700 for Clatterbridge Cancer research), I sea fished, bowled and travelled the world. What follows is my journey to date with the Big “C”. I have included some detail that hopefully may help others on a similar journey.
In 2010 and 2011, I started suffering with heavy sneezing that frequently resulted in heavy nasal bleeding which was very uncomfortable and at times extremely embarrassing. I consulted my GP who considered that my problem was caused by a restricted left nasal passage.
The problem continued and became progressively worse. I again contacted my GP in January 2012 who prescribed Bactroban 2% Nasal Ointment which did not improve my condition. My GP eventually decided that I should see a Consultant ENT specialist at Renacres Hall Hospital, Ormskirk and made an appointment for me in early March 2012. The diagnosis was that there was nothing wrong with my nose and again the problem of sneezing and the nasal bleeding was attributed to the restricted left nasal passage which was caused following a broken nose from my early schoolboy days, which was correct.
The Consultant suggested that I try using the NeilMed Sinus Rinse which did help to clear the nasal passage of mucus but did little to alleviate the sneezing and nasal bleeding.
I felt quite relieved that my condition was not more serious and tried to get on with my life as best I could.
Towards the end of June 2012 I developed double vision. My Optician at Specsavers in Ormskirk made contact with my GP resulting in a referral to see a Consultant Eye Specialist at Ormskirk Hospital. Exhaustive tests over several months failed to identify the cause of the problem. I was eventually given a head scan at Southport Hospital that identified a nasal swelling that required further investigation.
I had surgery on the 29th October 2012 at Aintree Hospital Liverpool, which I believed was to remove the swelling but it was a biopsy that was taken. On the 9th November 2012 the results of the biopsy confirmed that the swelling was a malignant Nasopharyngeal Carcinoma. Apparently, this is a rare cancer condition in the Western World but quite common in the Far East. Because of the location of the tumour and its proximity to my brain, it was not an operable condition but it was treatable with Chemo and Radiotherapy.
I was devastated at the news and the fact that it had taken so long to identify the problem. Would an earlier diagnosis have prevented or alleviated the harsh and prolonged treatment regime that I was to be confronted with?
I had further MRI, CT and PET scans, blood tests and then a review with the ENT Consultant and the Oncologist on the 28th November 2012 again at Aintree Hospital. I was first of all advised that taking my age into account I was to be offered palliative care only. My fitness level was to be my saving grace, I was assessed as having a fitness level some 20 years younger than my years and a treatment regime was put in place for me. My Oncologist advised me of all the risks associated with the treatment and said that I had a very long and rocky road ahead of me. He also stated that my cancer was probably stage 4. I wanted to know where I would be at the end of the “long and rocky road” and to my amazement, he said that he would cure me! I asked when do we start the treatment and in a light hearted way I advised that "failure was not an option." I was admitted to Clatterbridge Hospital on the 7th December 2012 and commenced my Chemotherapy treatment. I was to have Cisplatin and 5 Fluoracil Infusions over a 5 day “in hospital” treatment period which was to be repeated every 17 days with a total of 6 sessions and with a break after 3 sessions to review my condition. I coped well with the first sessions although tiredness and mouth ulcers were becoming a problem for me, making eating extremely difficult, and I was starting to lose weight.
At the review and following further scans at Clatterbridge, I was informed that the tumour had shrunk and that the Chemotherapy treatment was to continue in parallel with 34 sessions of radiotherapy. First of all I was to have a feeding peg fitted,
a further PET scan, a face mask made in the mould room and a dental review. The feeding peg was necessary because the chemo and radiotherapy would make my mouth too sore to eat with mouth ulcers and the lack of saliva. I was advised that the peg was the best option for me as the alternative was even more unpleasant.
I had the dental review and the face mask made on the 28th February 2013 at Clatterbridge, the PET scan at the Royal Liverpool Hospital on the same day. The feeding peg was fitted on the 5th, 6th and 7th March 2013 at Aintree. The Chemotherapy recommenced again on the 12th March 2013 at Clatterbridge and the first of the radiotherapy treatments were on the same day. The Chemotherapy treatments followed the same routine but when I was discharged between Chemotherapy treatments, I had to return to the hospital daily for the radiotherapy treatments. All in all, a daunting task for me and my family.
I went progressively downhill as the treatment continued with sleep deprivation, mouth ulcers and radiotherapy burns to my neck, face and particularly to my ears. I could not eat and relied on the feeding peg for nutrition. My weight continued to fall from 95kg (15 Stone) to under 70kg (11Stone).
After 5 session of the Chemotherapy my wellbeing was extremely low and on my journey home on the A59 approach road to the Kingsway Mersey Tunnel I collapsed and passed out giving my wife Phil, who was driving extreme shock, as it was peak time in the tunnel and the hard shoulder on the approach road at that point is very restricted. However she managed to bring the vehicle to a stop and revived me before we continued our journey home. I was at Clatterbridge again the following morning the 8th April 2013 to receive the next session of radiotherapy. The Consultant examined me and found that my white cells were extremely low. I was immediately taken to intensive care in Mersey Ward at Clatterbridge and monitored 24 hours a day over 3 days. I recovered and was discharged on the 10th April 2013 and continued with my radiotherapy but I could not cope with the final session of Chemotherapy.
I finished my last radiotherapy session on the 25th April 2013 and monitoring of my condition continued at Aintree Hospital initially on a monthly basis increasing progressively to 3 monthly reviews alternating between the Oncologist and the ENT Consultant.
My condition continued to progressively improve until the 1st July 2014 when I had an extremely sharp pain on the left side of my neck. It only lasted for a second or two but I knew it was it was not right and that I had a serious problem. I immediately contacted my GP who did not think that it was a malignancy problem but it did need looking at ASAP. I had a number of ultra sound scans and needle biopsies that confirmed my worst fear – it was malignant and needed immediate surgery.
I had further CT and MRI scans at Aintree and a PET scan at Broadgreen Hospital. Surgery followed on the 11th August 2014 at Aintree with a full half neck dissection to remove 15 Lymph glands, although only one was malignant the remainder were removed to prevent any further reoccurrences in that area of my neck. I was also advised that the PET scan had detected a polyp in my rectum that needed prompt attention. As my fitness had started to return after all the treatment, I was discharged from Aintree the following day, the 12th August 2014 as all my test results were good and following a session with the physiotherapist “I was good to go” just 22 hours after I walked in through the hospital door.
Follow up sessions raised the question as to whether or not I should have further Radiotherapy on my neck. After a number of reviews with the ENT Consultant and the Oncologist I decided not to continue with further Radiotherapy as the risks of having more treatment on top of the previous 34 Radiotherapy treatments that I had had at Clatterbridge would probably cause further damage to my blood vessels, bones and nerves. This was not an easy decision for me to make and the Consultants understood and sympathised with my position which essentially was “damage limitation – V – re-occurrence”!
I attended Aintree hospital again on the 29th August 2014 for a Sigmoidoscopy examination and again on the 15th September 2014 for the polyp removal. The histology report and further Sigmoidoscopy on the 11th December 2014 that I was clear and that there was no cancer and no further treatment was required – relief!
After the radiotherapy treatment, I have a dental appointment every 3 months to check on the condition of my mouth and teeth as the radiotherapy damages the saliva glands and that lack of saliva can lead to tooth decay and other problems. Following a routine dental check-up in early March 2015, a Leukoplakic Buccal Mucosa was diagnosed on the left side of my mouth. This was the same side of my face as the Malignant Lymph Gland had been and of course gave me great concern. I had a number of examinations and the Leukoplakic was surgically removed on the 23rd March 2015 with Maxillofacial Surgery at Aintree Hospital and thankfully this was not malignant and no follow up treatment was required – again relief!
I mentioned above that in June 2012 I developed double vision. From that date, when I was not receiving cancer related treatment or surgery, I attended the eye clinic at Ormskirk Hospital for check-up, eye test and the fitting of corrective eye patches to my spectacles to straighten my vision so that I could at least see to function.
I asked my Consultant Eye Surgeon if it was possible to have any corrective surgery that would help my condition. He stated that it was not his particular specialism but he did refer me to a surgeon who specialised in the type of corrective surgery that I needed and I had my first consultation with the surgeon at Ormskirk on the 16th April 2015 leading to a pre-operation 10th August and surgery 10th September 2015.
I was advised before surgery that it was an extremely delicate operation and not always successful, often requiring further corrective surgery. Despite the risks I decided to proceed and to my delight, the operation was a complete success. Indeed, it was so successful, that my vision was returned to my pre-cancer condition and I now only needed spectacles for close work and reading. I had always enjoyed superb vision and to have it returned was absolutely wonderful doing great things for my wellbeing.
The harsh treatment and the neck operation have left me with some problems that have to be managed. The most difficult to come to terms with has been the complete loss of my hearing. I had hearing aids fitted at Ormskirk Hospital Audiology Department in September 2013. The aids work but do take some getting used to especially in situations with background noise.
I also have chemotherapy induced neuropathic pain, which is a loss of feeling in my fingertips, toes and the soles of my feet and nerve twitches in my lower legs and feet. Sometimes they are quite severe and disturb my sleep. The Radiotherapy damaged my thyroid gland which has to be treated with Levothyroxine 50mg tablets on a daily basis. A blood test in October 2016 was good and confirmed that the medication is working well.
The treatment also damaged my saliva glands leaving me with an extremely dry mouth that makes eating very difficult especially if the food is dry, crispy or spicy in any way. I treat the dryness with Biotene Saliva Replacement Gel and Glandosane Synthetic Saliva and I use Colgate Duraphat 5000 Fluoride Tooth Paste to protect my teeth from decay. The loss of saliva and the resultant dry mouth also disturbs my sleep.
I have difficulty with mucus which builds up in the nasal cavity and is very difficult to manage, I use Sterimar Nasal Spray, a Beurer FS 50 steamer followed by NeilMed Sinus Rinse morning and night and occasionally, when it is particularly bad, during the day as well and I use Dymista nasal spray suspension once a day.
I get neck and shoulder pain following the neck operation that I manage to control with regular daily exercise.
I have regular flare-ups in the body hair follicles causing extreme itching I think that the cause is damage by the Chemotherapy treatment but my Oncologist does not agree. My GP has prescribed Dermol Shower Emollient and Lotion which I use daily. This helps enormously but is not a complete solution to the problem which disturbs my sleep and at times can be very embarrassing.
I treat my eyes nightly with Viscotears Liquid Gel and daily with Optive Fusion 10ml Eye Drops to alleviate the dryness, grit and mucus that regularly accumulates. A small price to pay for the return of my vision.
The review regime continued on a regular 3 monthly and then a 4 monthly basis until the 12th October 2016 when I was discharged from the Oncology department at Aintree Hospital to my ENT Consultant. My Last ENT appointment was the 6th September 2017 when I was moved to an annual review with the next ENT review being in September 2018 again at Aintree Hospital.
So, how am I after this long journey? I still have a number of problems that have to be managed on a daily basis as discussed above. On the positive side my fitness is slowly returning, I have started fell walking and bowling again and I hope to do some traveling, I feel quite good and I can eat most things the main exceptions being tough meats, crispy and spicy foods. My weight is up to just under 87Kg (13.75 Stone). All in all an excellent result taking everything into account.
It is difficult to switch on the TV, radio or to read the press without the National Health Service (NHS) being criticised for poor performance for one thing or another. I have to say that this has not been my experience. The service and treatment that I have received has been first class – indeed world class and notwithstanding the number of hospitals that were involved with my treatment the various appointments were seamless although hectic at times. I wish to express my sincere thanks to all the Consultants, Surgeons, Doctors, GPs, Anaesthetists, Radiologists, Ophthalmologist, Physiotherapists, Dentists, Nurses and General Staff from the undermentioned hospitals and clinics that participated in my treatment – a big THANKS TO ALL AT:
Aintree Hospital – ENT at the Elective Care Unit, Clatterbridge Hospital – Sulby and Mersey Wards, Ormskirk Hospital – ENT and Eye Clinics, Southport Hospital – Scans, Broadgreen Hospital – Scans, Royal Liverpool Hospital – Scans, Renacres Hall Hospital – ENT Clinic, Aughton Surgery – General Practitioner, Oak Dental Care Maghull and Specsavers at Ormskirk.
I often wonder if an earlier diagnosis would have helped or perhaps reduced the level of the treatment that I have had. Perhaps it would have done but on reflection, I think that it probably would not.
To conclude, at the time of my initial diagnosis, my wife Philomena (Phil) had a recurrence of her Ovarian Cancer that required further major surgery at the Liverpool Women’s Hospital. We were both in different hospitals at the same time putting even further pressure on us and our family and friends. Phil made good progress again and has now been discharged from her Oncologist but has subsequently suffered a further unrelated Cancer and has required 3 major operations and Radiotherapy.
Thankfully, she has again made good progress, has been discharged and is now well on the road to recovery and picking up her life again.
I am often asked “how did the two of you cope with all this” this is not an easy question to answer, in short, a strong faith, complete trust in the medical teams that treated us and the strong support from our family and especially from youngest son Simon from Aberdeen who took some 5 weeks business leave and did most of the driving after the A59 incident, and last but not least, an extremely wide circle of supportive friends.