MERKEL CELL CARCINOMA

PROLOGUE

This diary is written as the events unfold, and are a record of my emotions and views at the time. Where to begin! I was born in Yorkshire in 1942 and married in 1964 to Alison, we have two adult sons, one dog and one cat. In 1992 we moved to Orkney and spent the next eighteen months building our own home overlooking the expanse of Scapa Flow. This was where we planned to spend the rest of our lives. One person in three will have some type of cancer in their lifetime. Rather low odds, but then it always happens to someone else. So you drift on through life with little care other than the occasional donation to a cancer charity when a collecting tin is thrust under your nose. Usually by someone with a smiling face that disarms, enticing a larger donation than usual. For a fleeting moment a thought flashes through your mind, no, not me, but hopefully it will help someone.

 

 

About the beginning of June 2004 a small spot appeared on my left arm, just above the elbow. Somewhat insignificant, it only required the occasional pick! Soon it began to grow into a small lump. For years I've developed small lumps and bumps around my body without any concern or adverse effect. But this was different; a firm lump developed rather fast and felt quite warm to the touch, but with no discomfort. By the end of the month it had attained a size of about 4cm. Alison became a little concerned about it's size and eventually persuaded me to visit my doctor. I saw Dr Deans on the 30th June for my repeat three monthly prescriptions for my continuing Hypertension treatment and an opinion on the ever-enlarging lump. After rolling up my sleeve, he proceeded to poke the offending site, asked a few questions and declared the lump to be a Sebaceous Cyst. No problem! He did offer me the option of having it removed. I declined his offer as the lump would be mostly covered by my sleeve. I felt the procedure would be purely cosmetic. Besides, I didn't fancy someone digging into my arm for no other reason than vanity. Shortly after my visit to the doctors the lump began to change rapidly, it proceeded to swell and take-on a form. It began to break cover. The centre of the lump began to emerge into what can only be described as half a raspberry, spherical, red, smooth with what I can only describe as a covering of translucent mini spheres, and about 2.5cm diameter.

This time I didn't require any encouragement to return to the doctors. Monday 2nd August saw me again seated in Dr Deans surgery, he still declared, that the lump now resplendent with a bright shiny raspberry was a Sebaceous Cyst. When in doubt ask!

For a second opinion, I was sent across to the Balfour to see the consultant. Clutching a note, I ventured round to reception, offered up my note and took a seat and waited. And waited. The hands on the wall clock above reception lethargically dragged themselves round. Patient after patient shuffled in and out of the consulting room followed by rather a large nurse clutching large brown folders. "Right", I turned to see the same large nurse looming over me holding what I assumed was my file. "Follow me", I glanced at the wall clock, two hours had elapsed since I first sat down. I entered the consulting room of Dr Janardhan, our locum consultant, closely followed by my large attentive nurse. A large smile spread across Dr Janardhan's face, he stood up, we shook hands, and had instant rapport. Up came my sleeve again. I was somewhat surprised to hear him declare that my "raspberry" was just a Sebaceous Cyst. I was now beginning to have doubts as to the diagnosis; my lump was hard and felt devoid of any pus. Not to worry these are the experts! Dr Janardhan turned to the nurse, and both agreed a liberal coating of Magnesium Sulphate would draw the unwanted pus from the offending Sebaceous Cyst. I must admit to being a little sceptical about this procedure. A dressing was applied, and I was instructed to return the following morning at 11am.

Looking back, I suspect Dr Janardhan had a pretty good idea what my "Sebaceous Cyst" really was, but was giving himself time to make enquiries. At exactly 11am I presented myself at the Balfour Hospital reception. I looked up at the wall clock with disdain; I was beginning to hate this clock as it moved ever slower. How long was it going to make me wait this time? Half an hour elapsed before I was ushered into Dr Janardhan's consulting room followed by the obligatory nurse. My sleeve was now beginning to roll it's self up! The dressing was carefully removed and there in full splendour was my "raspberry", bright and shiny and not a sign of pus anywhere. Dr Janardhan turned to me, the smile on his face had now disappeared, and he had now become more serious. " I'm afraid this will have to come off ", thoughts began to stir in the back of my mind, thoughts I was not prepared to contemplate. "When"? I half stuttered, "tomorrow". My mind instantly engaged overdrive, but I was supposed to be on the overnight boat to Aberdeen and on to Scilly for our annual get together, surely it would wait another couple of weeks! Dr Janardhan was somewhat insistent that the offending cyst be removed without delay. Telephone calls were made, nurse scurried in and out, all clutching more brown folders and beds and theatre times were discussed. Next a man in a white coat entered the room and introduced himself as the anaesthetist. Panic!

The anaesthetist checked my medical history and informed me that I would be second on the list tomorrow morning and would require a general anaesthetic. Everything was now moving so fast, it was beginning to feel a little surreal. I found that the first on the list was a caesarean. I just hope they get us in the right order! Thursday 5th August, 8am, and I present myself to the male ward of the Balfour Hospital. As they wheeled me out of the ward towards the operating theatre, I noticed the clock on the wall was just 10-o'clock. I remember the anaesthetic room, and the anaesthetist saying that I would possibly experience a funny taste in my mouth in about twenty seconds. Then a sharp prick in my forearm, I could see a clock on the wall. I watched the second hand briefly, then came a funny taste, I went out like a light. It was just 11:15 am when I arrived back on the ward. Both the theatre clock and the ward clock were far superior to the lethargic one in reception, both have the ability to stop and instantly leap forward! While recovering on the ward, Dr Janardhan came to visit me and let me know that he had removed the tumour and would request a biopsy report to be received at the Balfour within two weeks. I was still lethargic from the effects of the anaesthetic, but the word "tumour" rang alarm bells. This was the very first mention of a tumour! When I returned home it wasn't long before I was trawling the web for skin cancer when I came across a photo of a near identical looking lump, Basal Cell Carcinoma, prognosis excellent, panic over. Ten days later, I returned to the Balfour to have my stitches removed. I ask, but there was no sign of the biopsy report.

Just one month later, Sep 6th, I had an appointment with Dr Dohrn, another locum consultant, at the Balfour Hospital to hear the results of my biopsy. I was directed to his consulting room and introduced to two student doctors. He then proceeded to read the report. The scientific sections were just mumbo jumbo to me until I heard the word "Carcinoma". I asked him to repeat what he had just read, and possibly explain the contents. It was only when I heard the word "Merkel Cell Carcinoma" a second time did I begin to understand my situation. This was the moment my world fell apart. How many times do you hear this phrase? I know it's a cliché but only those who have ever been there will understand the true meaning and feelings you experience at that time. My mind was now in absolute turmoil and I was able to register very little that was being said or going on around me. One thing I did know, was that I would be unable to retain anything said to me until I arrived back home. To enable me learn more of my condition I asked Mr Dohrn to write down the type of cancer that I had been diagnosed with. This would enable me to make my own investigations. I was instead given a copy of the Histopathology Report. I left Mr Dohrns consulting room in what could only be described as a state of "total shock" having been offered little help or prognosis regarding my cancer, other than that he would arrange a CT scan at Aberdeen Royal Infirmary for me within the next three to four weeks. I felt like a condemned man, clutching my own death warrant as the door closed behind me. Once outside the consulting room I turned towards the exit past four or five nurses sat around a desk, not a smile or goodbye. All I felt was four or five pairs of eyes following me down the corridor. I knew they knew!

I arrived home at lunchtime, reluctant to immediately surf the web, for fear of what I would find. Eventually after lunch I logged on and typed "Merkel Cell Carcinoma" into Google. What I found was far worse than I could have ever imagined. This was a totally different cancer from the Basal Cell Carcinoma I had found previously. My world may have previously fallen apart; I was now disappearing down a Black Hole. It is difficult to describe the despair after reading the possible prognosis, six months is the worst case if it's already spread to other vital organs. I felt both frightened and vulnerable. All cancer sufferers are told to be positive and fight the diseases, how do you fight rapidly mutating cells? Positive yes, I was not prepared to sit about and wait for the system to get it's arse in gear, I was going to kick it. I've had some practice. My first step was to visit Dr Linklater the following day, Sep 7th. After two months watching a tumour grow on my arm before excision, and waiting a further four weeks for my biopsy report, I told her that I was not prepared to wait a further four weeks for a CT scan and any possible treatment. The sands of time could be running out very fast for me. I left her surgery with the promise that she would contact Aberdeen Royal Infirmary (ARI) and arrange for me to see a specialist, and have a CT scan as soon as possible. Within a couple of hours of returning home Dr Linklater telephoned to say that she had arranged an appointment for me with Mr Hutcheon, the Oncologist at the ARI on the 15th Sep and a CT scan on the 16th Sep. This was fantastic news. I felt that I was beginning to get back some control of my life. A day or so following conformation of my appointment from Dr Linklater, I had a telephone call from Mr Hutcheon's secretary to confirm my appointment, I asked if she could arrange for me to see a Macmillan nurse while at the ARI. She agreed to my request. On the 10th Sep Ian and Carol arrived home prior to my visit to Aberdeen. Carol formulated a list of about sixty questions for Mr Hutcheon when we would all meet up together at the ARI.

Monday 13th Sep, Kirkwall Airport, time 8:20, flight BA8836, and bound for Aberdeen. After my induction at the ARI, various people came to see me and then disappeared. Someone among this procession informed me that I was to see the Macmillan nurse tomorrow. 11 o-clock, Tuesday morning, I met Ruth Cooper the Macmillan nurse. We eventually found a spare room for some privacy. The meeting can only be described as a waste of time, as she spent the whole time looking at her pager. It was very disconcerting, as she was not concentrating on my questions. Eventually the bloody pager bleeped and she left for her anticipated meeting! Thanks. Next to visit, were Mr Holmes and his entourage of student doctors. He said that he had made arrangements for a second operation to increase the margins from where the tumour had been removed. This would possibly require a skin graft, and required me to attend ward 39 next Thursday the 23rd Sep. Eventually Ian and Carol arrived after a long drive from Orkney. We were all together to meet both Mr Hutcheon and his assistant. Following the introductory pleasantries, we all began to cross-examine Mr Hutcheon from our formulated list. Ian had the "audacity" to ask Mr Hutcheon how many patients he had seen with MCC, "six" was his response, "and how many were still alive", no response. For the three of us these were very important questions, but for Mr Hutcheon's assistant, registrar Dr Ann Kennedy, these must have appeared somewhat trivial. Both Carol and I noticed Dr Kennedy roll her eyes and look at the ceiling as if we were a group of morons. How the hell do people get these jobs when they fail to have the first requirement, common courtesy? No doubt one day she'll fall out of her ivory tower. That evening we wandered the streets of Aberdeen for some time before eventually settling for an Italian restaurant, where, with a rather perverse sense of black humour, we toasted "the Last Supper".

Wednesday 15th Sep. At about 9am a porter arrived with a wheel chair to take me down for my 9:20 appointment with the CT scanner. I mildly protested that I was quite able to walk there. "Sorry I have my instructions". How embarrassing, I felt like a geriatric, being wheeled into lifts and down miles of corridors. After consuming large amounts of a rather vile green liquid, I was taken through into the room that housed the scanner. I was placed on the bed of the scanner with various tubes attached to my arm that appeared to cross the ceiling and disappear into the control room. When the nurse had completed my connections she retreated behind the glass screen of the control room. As the machine sprung to life it was all like something out of Dr Who, all we were short of were a few ping pong balls and a sink plunger! I was informed by a two-way communication system from the control room that I was about to experience a feeling throughout my whole body. It's difficult to explain, but it felt like some warn fluid had just surged through my whole system. Next the bed started to inch forwards and propel my feet into the rotating drum. Slowly I was consumed by this monster as far as my neck, and then slowly withdrawn. As the machine slowly came to a standstill, nurses reappeared and I was disconnected from the plumbing. I returned to the ward and packed my bags ready for Ian and Carol to collect me. After a short walk just outside Aberdeen we had a superb lunch at a nearby pub before they dropped me off at the airport for the return flight home. As the aircraft descended towards Kirkwall we flew low over South Ronaldsay and Burray. For just a moment I felt quite emotional as I could clearly see our home,Waaness.

For weeks I had been unable to get a good nights sleep, every time I closed my eyes my brain would engage overdrive and everything regarding my cancer would endlessly spin round and round driving out any chance of sleep. While in hospital I asked the nurse if it was possible for a sleeping pill," no problem, I'll just get a doctor to prescribe one". This was the first decent night's sleep for what had seemed an eternity. Absolute magic. Wednesday night, I was again unable to sleep. Daylight was a long time in arriving, if only some semblance of normality would return. Eventually 8:30 arrived and I was able to make an appointment with Dr Fay. He was very understanding and gave me a prescription for some sleeping pills. When I arrived back home Alison was quite animated, "where've you been? The telephone hasn't stopped ringing". "Mr Holmes has just telephoned to say that your CT scan is clear, and also Rabbi Lionel Blue telephoned while you were out". "Clear"?, the relief was incredible, was this, the start to some degree of normality I sought? Since the onset of my cancer both Carol and Ian had beavered away looking for all they could find on MCC. One of the sites Carol had come across was an account that mentioned Rabbi Lionel Blue had also been diagnosed with MCC. Carol had managed to contact the BBC and through a third party had asked whether Rabbi Blue would be willing to speak to me about his condition and treatment etc. The third party agreed to pass on our telephone number to Rabbi Blue. Clearly this was done, but I was unfortunately out when he called, but he gave Alison his number so I could call him back. Unfortunately he gave the wrong number so I was unable to contact him. Fortunately however, Carol was able to re-establish contact with her third party, and so I was able to contact Rabbi Blue the following day. It was good to talk to someone with the same cancer, I now felt less alone.

23rd Sep and I'm back in Aberdeen for my second operation. I'm put into a twin ward with Peter Campbell who has just had a Melanoma and lymph nodes removed; he's good company for such a depressing place. I hadn't been in bed long before two female student doctors appeared to go through all the usual checks and questions. I think in future, I will have a printed sheet with all the required details on to hand out to any questionnaire. When you have difficulty remembering dates and illness', it will make life considerably easier. Shortly after a disgusting lunch, Mr Holmes and eight or nine junior doctors appeared. He said no time had been set for tomorrow's operation, but I would require a skin graph to close the excision. 5:30pm and I have a visit from the anaesthetist, I'm first on in the morning.

Friday 24th Sep. 8:30 and I'm wheeled down to theatre. I arrive half doped following my pre-medication. Its such a clamour in what appears to be a small area; people were dressed in gowns and masks, tubes everywhere, and monitors wall to wall. "Right, this is not going to hurt". I was ready for a sharp prick in my arm, but no, this was the sly trick of placing a mask over your nose and mouth without it coming into your vision. A firm hand clamped the mask to my face, a couple of lungs full and I'm away with the fairies. By the time I arrived in the recovery ward it was already quite full. After a short stay I was taken back to my ward by about 11-oclock. I felt absolutely terrible until late afternoon when the anaesthetic started to wear off. Unfortunately so did the painkillers. It was then, for the first time, I found the area from where my skin graft had been removed. My right leg was in pain and I was unable to turn and make myself comfortable in bed, as my left arm was now immobilised in a splint. At about 5:30, a doctor came to visit and explained what procedure had been done to my left arm, they had gone down a further one centimetre, and I now had a hole in my arm the size of a Wheatabix. Next to arrive was the anaesthetist, followed shortly after by Mr Holmes.

Sunday 26th Sep. I arrive home at teatime.

Monday 4th Oct. back again to Aberdeen, this time to the skin graft clinic. I was ushered through into a curtained off cubical where a nurse proceeded to remove my splint, then carefully the dressing covering the graft. She managed to ease one corner but the rest was firmly stuck. While she was away to get a bath of warm water to loosen the rest of the dressing, I had a look behind the loose corner. My stomach turned, it was like raw meat. My arm was next placed in the warm bath and the remaining dressing was teased gently away. When the extent of the graft was fully revealed I felt quite sick. "Excellent, that's taken well". Were these words of reassurance or was it fact! Whatever the truth, I was glad when she proceeded to replace the dressing, but would preferred not to have the splint. Having the use of only one arm can be incredibly frustrating! The donor site dressing on my right leg was also replaced; this was nothing like my arm.

Friday 15th Oct. Again in Aberdeen to the skin graft clinic. First I spoke to the duty doctor regarding the biopsy of the second operation. He was not very forthcoming when I questioned him about my cancer. He did allow me to read the report, which showed the site to be clear of any cancer cells, but would not supply me with a photocopy. He said a copy of the report would be sent to my doctor. This would do me. I would get a copy from Dr Linklater. Before the doctor left, I asked about what the follow up treatment would be, his response "the same as Melanoma" whatever that meant. Next the nurse removed my splint and dressing. What a difference ten days make. It wasn't the prettiest sight, but still it was a vast improvement. The dressing was duly changed and I was at last sent home without my splint.

Thursday 4th Nov. I arrived at the Balfour at exactly the prescribed time for my appointment with Dr Sarker. I was not prepared to have that hateful clock constantly remind me how long the appointments were running late any longer than possible so I sat with my back to the offending time piece. Dr Sarker was the radiotherapist from Aberdeen, and held regular clinics in Kirkwall. He was a very delightful Indian but difficult to understand. He made it quite clear that there was no need for radiotherapy treatment. He did mention that MCC tumours were very susceptible to radiotherapy treatment and in his words "would melt like snow in May". This is not quite the same as reported in Department of Surgery and Pathology, Memorial Sloan-Kettering Cancer Centre report which states: 'MCC has been shown to be radiosensitive in selected patients'. In our discussion, he said that the cancer could spread into my system, by-passing my lymph nodes. I ask how would I know if the cancer had spread for instance to my liver? "Ahh, you would possibly be passing blood". That's all I wanted to know. No treatment and no bloody hope! After weeks of trying to come to terms with my cancer this was the last thing I wanted hear. All this came as a devastating shock. I was now in a far worse position than when I was first diagnosed, as now I understood more about MCC. Fear was now becoming a constant companion. So much was now swimming around inside my head that I had to talk to someone who understood my situation before I went mad.

Tuesday 9th Nov. I had a very long and helpful talk with a Macmillan Nurse at the Balfour. One helpful thing she suggested was that I take up an interest that would hopefully help to take my mind of things a little. Good idea, I decided to try my hand at model boat building. But before commencing my first project, I felt that I needed to get away into the sunshine and just try and relax for a short while and leave everything behind. A quick search of the Net and it wasn't long before we had booked a ten-day holiday in Cuba. This turned out to be just the holiday we both needed.

Monday 6th Dec. Driving homewards we reached a large overhead display sign at Inverness that read " No Orkney Ferry Sailing". This was the last thing I needed, as I was due to fly down to Aberdeen the following morning. I phoned the doctors and asked them to cancel both my appointment and flight, as it was now impossible to get home until mid-day tomorrow at the earliest.

Tuesday 11th Jan. I received my new appointment with Mr Holmes, for the 16th April! I phoned Aberdeen and asked if it was possible to have an earlier date, yes, 8th March. I was now beginning to detect a distinct lack of both interest and urgency.

Saturday 6th March. While thumbing through my folder for my flight tickets, a web printout of a site that I had found months earlier from Australia caught my eye. One of the things that made this site different from the rest was the incidence data, approximately 200 cases of MCC between 1993 and 1999. Someone in the Royal Hospital Brisbane must have more knowledge than Mr Hutcheon in Aberdeen, with his six cases. Due to what I perceived to be lack of interest from the team in Aberdeen I felt that I had nothing to lose in contacting Dr Kelly at the Queensland Radium Institute. Using Dr Kelly's e-mail address on the web site resulted in a returned e-mail. I took the second on the list; Dr Leonard, with a request that she could pass my e-mail on to anyone she thought could help. Hope at last; the email was not returned. Just before midnight I received a positive response, 'What I have done is forwarded your email onto one of the Oncologists at the hospital next door to our research centre. She has had a lot of experience treating patients with Merkel cell tumours and maybe able to advise you and your physician.' Absolutely brilliant. Then mid-day Sunday a second e-mail, this time from Dr Kellywhich stated 'We regard surgery as wasting time while the tumour spreads. This tumour is sensitive to radiation. Radiation is urgent because spread is so fast. If that was on my arm, I would be chasing a radiation oncologist and asking them to irradiate my axilla, supra and infra--clavicular fossae and perhaps my upper mediastinum as well'.

This came like a breath of fresh air, a completely different approach to MCC than I was getting from Aberdeen.

Tuesday 8th March. Same time, same place, same flight, but this time to see Mr Holmes at his clinic. I was shown into an empty consulting room to await Mr Holmes. Shortly, he entered the room followed by half a dozen students. I questioned him about the possibility of radiation treatment, and asked him to read Dr Kelly's e-mail. He dismissed it out of hand claiming that no proper research had been carried out, or papers written. He said that he was not prepared to give me any radiation treatment because he felt it would do me no good! But said I could have a second opinion. I didn't tell him that's what I intended, but not in Aberdeen, as I believed that would be incestuous. I said that I would consult my doctor about a second opinion, he retorted rather contemptuously "and what does she know about Merkle Cell Carcinoma". I asked him how many Merkel Cell Carcinoma cases he had seen in his career, his answer, twelve. He said he would make me another appointment for three months time, I doubt I will attend, I see no point travelling to Aberdeen without the prospect of any treatment just to be paraded in front of his students. I'm now beginning to feel that I've just become one of Mr Holmes teaching aids, having MCC

Wednesday 9th March. I informed Dr Linklater that I required a second opinion on the possibility of treatment, I felt this was very important following Dr Kelly's e-mail. As Aberdeen is our Primary Care Trust it would have to be there, she informed me. That's not where I want to go. If I wanted to go elsewhere, then my request would have to go before the Orkney NHS Trust financial committee at one of it's monthly meetings for funding. "It's the Royal Marsden Hospital (RMH) where I wish to go. And rather than waste any more time I'm prepared to go privately". Before departing I mention a dark brown mark that had recently appeared on the right-hand side of my nose! Later in the day Dr Linklater telephoned to say that she had been in contact with Professor Martin Gore at the RMH and had faxed my details to him, also his secretary would shortly be in contact with me to arrange a date for my visit.

Tuesday 15th March. Still no response from the RMH. After speaking to Dr Linklater I contacted Professor Gore's secretary, she claimed not to have seen the fax, but it was possible that someone else in the office may have filed it away! I asked her to keep her eye on her fax machine while I arranged for a second copy to be sent. It was about 4:30pm when I spoke to the receptionist at the surgery and explained the situation. "No problem, I will see to that immediately". Where else would you get this kind of service?

Wednesday morning 16th March. Professor Gore's secretary telephoned to arrange a date for my appointment. With Easter looming, and Professor Gore away for a week, we decided on the next possible date, 2:00pm Friday 18th March, PANIC. Arranged flight with Ridgeways, packed my case and contacted Mike about staying at his house in Crickelwood for a few days, and I was ready for my morning flight to London.

Thursday 17th March, Arrived London Heathrow on a bright sunny day at 11.40, to be greeted by a waiting "Pascoe". Friday 18th March, after two hours in the Science Museum we left for the Royal Marsden for my 2:00 pm appointment with Professor Martin Gore. I was first examined by Dr Whatkins before being shown through to Professor Martin Gore, a large and extremely pleasant man. I showed him Dr Kelly's e-mail, which he politely dismissed as "florid". He said, that as there was no indication of any swelling in my lymph nodes he would "leave well alone" as radiotherapy could result in unnecessary damage. He did however say that should the cancer spread then he was prepared to give me chemotherapy. Would this just be palliative care?

Friday 25th March, Returned from London to Edinburgh en-route to Kirkwall to be informed that Kirkwall was presently fog bound. After a delayed start we arrived at Inverness only to be told that as Kirkwall was still fog bound and that was as far as we were going tonight! The member of staff from British Airways told us that we were not his responsibility as we had been informed at Edinburgh that we might not be able to complete our journey. What a cop out! Surrounded by a planeload of dissatisfied passengers he soon relented and organised accommodation and transport to Nairn. I eventually arrived home the following morning.

23rd April, I download a paper on MCC from the American Journal of Clinical Oncology (dated April 1st 2005). This document is a statistical analysis of 251 patients with MCC from the Department of Surgery and Pathology, Memorial Sloan-Kettering Cancer Centre, New York, who had been treated between 1970 and 2002. This is the best and most informative document that I have yet found.

Tuesday 21st June, Visited my doctor Mhari, to see why I had not been called back for another check up at the ARI. Because of my high blood pressure she sent me round to the Balfour for a chest x-ray and cardiograph.

Wed 29th June Returned for a second BP check and the previous results, both x-ray and cardiograph OK but my BP is still very high! From the ARI, Mr Holmes had informed her that I had declined a repeat visit while at the ARI on the 8th March. Its becoming very difficult to make any progress at the ARI when confronted with this kind of deceit. Another visit had been arranged for me to see Mr Holmes again in July.

30th June, Prior to my impending visit to the ARI, I decided to contact Professor Gore for his advice on the frequency of the CT scans that I should be receiving in my present condition. If his reply was in line with others in this field then I would ask for another CT scan when I visit Mr Holmes.

E-mail sent……… Professor Martin Gore The Royal Marsden London.
Dear Sir,
I must thank you again for seeing me at such short notice on the18th March this year regarding a second opinion of my Merkel Cell Carcinoma. With regards the future monitoring of my condition I would be grateful for your comments on the possible frequency of a CT scan to check for any secondary tumours. I understand the risks that are associated with the absorbed x-rays of this procedure, but are these risks worth taking if this would facilitate the early intervention of treatment should a tumour be found? Please advise.
Kind Regards Alan Wallbank

Reply…………

Nice to hear from you, hope you are keeping well There is no absolutely correct answer. My suggestion would be 6 monthly for 2 years but be seen 3 monthly. Certainly no more frequently.
Martin

12th July 2005, Happy Birthday! Back again at the ARI to see Mr Holmes, and on Professor Gore's advice ask for a second CT scan. I was shown into the consulting room and had the curtains drawn round while I sat on the bed and waited. The door to the adjoining room opened and heard someone enter the consulting room, while through the open door I could hear two people talking, next a second person entered the room and the screen was pulled back. No Mr Holmes! But Mr Holmes' registrar Mr Lamb, and another assistant. A quick feel of my lymph nodes under my arm and around my neck, a couple of questions and that was my three monthly check up. Following this check I proceeded to ask Mr Lamb for a second CT scan, the reply was what I had anticipated, " I don't feel it necessary". I ask if that was a "no" and he confirmed this. Is this the end of the road with the ARI?

July 14th. Returned to see Mhari for another BP check, 180 over 110, still far too high. All this stress with the ARI is obviously not helping. I also discussed with her about transferring my continuing care from the ARI to the Royal Marsden. She suggested that I write to Dr Beattie Medical Director at Orkney Health Authority.

14th July 2005
Dear Dr Beettie,
In August 2004 at the Balfour Hospital Kirkwall, I had a tumour removed from my arm. The result of the biopsy revealed the tumour to be Merkel Cell Carcinoma (MCC). Following this revelation I searched the Internet for all the information I could find to enable me to understand my condition. It soon became clear that firstly MCC is an extremely rare type of skin cancer, and secondly the prognosis for the first three years is poor. In September 2004, I had a second operation at Aberdeen Royal Hospital (ARI) to increase the margins at the tumour site, followed by a skin graft. I underwent a full body CT scan while at the ARI; the results indicated no distant metastasis. On the 8th March 2005 I attended the clinic of Mr Holmes at ARI for a follow-up examination. I asked him about the possibility of adjuvant therapy, particularly radiotherapy. He dismissed this option claiming that no proper research had been carried out or papers written. He did suggest that I could have a second opinion. Since my original diagnosis I have continued to search the Internet for more information, some of this material I have read are published papers on both treatment and management of MCC, not all agree with Mr Holmes. For my own peace of mind I decided to ask my Doctor to refer me to someone else for a second opinion. I was somewhat surprised to learn that as the ARI were our Primary Care Trust, that this was where I would have to go for my second opinion. Rather than wait for approval from Orkney Health Trust for funding for my second opinion I felt that as a mater of urgency I would fund this option myself. On the 18th March 2005 I had a long and informative discussion with Professor Martin Gore at the Royal Marsden Hospital regarding my MCC. One opinion that predominates in my readings of MCC management material was that most specialists agreed on frequent examinations and CT scans in the first three years following diagnosis of MCC. Prior to my next follow-up examination in July 2005 at the ARI, I contacted Professor Gore with a request for his advice on the frequency of CT scans. His advice (see attached e-mail) was in line with most other specialists in this field, three monthly examinations and six monthly CT scans. On the 12th July 2005 I attended Mr Holmes' clinic at the ARI and was seen by his registrar Mr Lamba. At the end of his examination I ask for a second CT scan, this was declined as he said that it was unnecessary. Since my first visit to the ARI following the diagnosis of my MCC I have found some of the staff unhelpful in answering fully, many of the questions that I feel are very important. Also my request regarding adjuvant therapy, and CT scans, were dismissed without a full explanation. As MCC is extremely rare, I feel now that it requires more specialist care, and the future management of my condition would be best undertaken at a specialist cancer treatment centre. I therefore request that my cancer management be transferred to Professor Gore at the Royal Marsden Hospital in London.

Yours Faithfully
Alan Wallbank

Sunday 17th July. While checking though the news pages on teletext I came across a news item that claimed the ARI were using their scanner to scan rock samples for the oil industry! After checking with the Press & Journal in Aberdeen, it appeared that the story originated from the Scotland on Sunday newspaper.

CT scans rocks while patients wait

RICHARD GRAY HEALTH CORRESPONDENT

A hospital where patients currently wait four weeks to receive potentially life-saving brain scans is making the same equipment available within hours to analyse rocks for the oil industry. Scotland on Sunday can reveal Aberdeen Royal Infirmary has been hiring out its computed tomography (CT) scanners and staff to oil firms so they can take three-dimensional images of rock core samples. NHS Grampian admitted they have leased scanners to several un-named oil firms since 2003 while patients at the hospital currently wait four weeks for a CT scan. It is believed the hospital charges at least £300 a session. The machines are provided so doctors can look for tumours, spinal injuries and tissue damage in patients that normal X-rays cannot detect. Although the hospital is inside the nine-week waiting time target set by the Scottish Executive, the non-medical use of the expensive scanners has infuriated patients and politicians. They claim that neither staff nor machines - which can cost up to £1m each - should be used to do private work before NHS waiting lists have been cleared. CT scans of rock core samples are used by the oil industry to distinguish between changes in density in rock and clearly identify oil in porous sections. NHS Grampian, which recently announced it would have to make £20m of spending cuts, provides oil firms with a radiographer to operate the scanner. A spokeswoman said: "The arrangement with companies in the oil and gas sector wishing to obtain CT scans of rock core samples is a private one. "We have two CT scanners at Aberdeen Royal Infirmary and this work is done outwith normal working hours. It has no effect on patient care, and in any emergency out of normal hours a patient would always get priority. "The remuneration we receive from the companies pays the radiographers and makes a small contribution to overheads within the radiology department." But using medical equipment to examine samples of rock has angered radiologists who believe spare capacity should be used to deal with patients. "In some board areas scanners are not being funded to operate on full capacity and so the machines are sitting idle from lack of resources," said Dr David Nichols, Scottish secretary of the Royal College of Radiologists. "If flexible working and adequate money was put in, then operation times could be extended until 8pm and also on Saturday and Sunday mornings. "That would have a massive impact in bringing waiting times down." Patients' organisations said it was unacceptable for patients to have to wait months to be seen when scanners were available. "Making them wait for even a few weeks adds terribly to their anxiety and can seriously affect their quality of life," said Katherine Murphy, from the Patients' Association. "The priority should be to use the resources available to their fullest and prioritise their use." SNP shadow health minister Shona Robison said: "The scanners in NHS hospitals are publicly funded pieces of equipment. We need to get these scanners working more of the time so NHS patients can get the treatment they deserve rather than using private companies to reduce waiting times. "If it is possible for staff to do these private sessions, then it is possible for them to spend more time treating NHS patients."

Am I now second in line to oil company rocks? What is happening to the NHS?

20th July, Received a response from Jim Wallace MSP regarding my initial complaint about a second opinion. This has now been passed from NHS Grampian to NHS Orkney. I suspect the outcome will be more platitudes from Garden House.

2nd Aug. Another visit to Mhari, BP now 170 over 100. Slight improvement; hope this trend will continue.

3rd Aug. After no response from Dr Beattie a second letter was sent.

15th Aug. Finally received a reply to my letter of the 14th July. My request to be transferred from ARI to the RMH will be considered by NHS Orkney's Unplanned Patients Activity Committee on the 19th Aug, What a grand sounding name for a committee. It's hard to imagine that in this day and age of e-mail, telephone and government targets that it would take four weeks for Orkney Health Authority to answer a simple letter! Well done Dr Beattie. What must the rest of the NHS be like if it takes so long just to answer a letter?

16th Aug, The Complaints Officer for NHS Orkney telephoned to say that she had just received an e-mail from the Scottish Health Department regarding my complaint about a second opinion. It was on the 16th March that I first spoke to Jim Wallace's secretary about having to have my second opinion at the ARI, since then my complaint as been passed from Jim Wallace to Andy Kerr, Secretary for Health Scotland, to NHS Grampian and now NHS Orkney. Five months! Apparently part of the delay was the responsibility of NHS Grampian. It's as well that it's not an emergency! She did apologise profusely for the delayed response in answering my letter. Ever so slowly the wheels of bureaucracy turn!

22nd Aug, Appointment with practice nurse for a blood test following new medication for my hypertension, after removing the blood sample I asked her if she would possibly check my BP, 114 over 92, For me, better than normal! Mhari has now left the practice so before leaving the surgery I reluctantly made my next appointment with Dr Beven for my test results. I would have preferred to see Dr Fay, but he's off sick!

24th Aug, Dr Beven informed me that my blood test results were satisfactory. Good. I suggested that if I were to have a second CT scan this would reduce my stress levels and consequently my BP. I said that this would be preventative medicine, and not what I felt I was receiving, crisis management! Then I got the Skerryvore mantra; it was just like sitting in Dr Fay's surgery, but without him pointing to a wall chart. "A CT scan is the equivalent of 800 chest x-rays". Or as I pointed out, 3.3 years natural background radiation according to the American FDA. "But there is the possibility that this could induce a cancer". True, " but according to the FDA, it's a 1 in 2000 chance. And seeing that I have already had one, to me these were very acceptable odds". Why do I have to struggle to get a little help? Is it time to move on?

From mid to late July I had a slight discomfort under my left arm, was this real or was the stress getting the better of me? By mid August the discomfort had increased and was now accompanied with a swelling. I had considered mentioning it to Dr Beven at my last appointment, but as the consultation was far from harmonious, I felt that he would only dismiss it as a state of mind. The discomfort and swelling remained, so I called to see Dr Stevenson, Mhari's replacement on Sep 1st. She is a recently qualified doctor and is extremely pleasant and approachable. After poking and prodding under my arm she declared that she could find no swelling of my lymph nodes! So it's all in the mind!

Sep 12th, Received an email from the NHS Orkney Complaints Officer with an attachment, Dr Beatie's response to my letter of the 14th July. She was making arrangements for an appointment with Professor Elaine Rankin at Ninewells Hospital Dundee. Movement at long last.

Tuesday Sep 13th, the discomfort under my arm was not getting any better, Alison suggested I go back to the doctors. I declined, I was getting tired of asking my medical practice for help. This was now the time to move on. At 9:45 I rang the Daisy Villa practice in St Margaret's Hope for an appointment with Dr Simon Kemp, yes he will see you at 10:20. A quick shower, a cup of coffee and I was on my way to the "Hope". "Sit on the bed and I'll have a look", off came the shirt, and before he started to feel my lymph nodes he said he could see the swelling. What a relief, I was sane. After a thorough examination he said that I required further investigation. He immediately picked up the telephone and called Dr Beattie at Garden House. Unfortunately she was unavailable but he said that he would ring her back shortly and let me know her response. Lunchtime and Simon telephoned to say that he had made an appointment for me with Professor Elaine Rankin on the 21st Sep at 3:00. What a difference, what a change, for the first time since my cancer was diagnosed I'm now pushing at open doors.

Sep 21st, I leave Kirkwall for my appointment with Professor Rankin at Nine Wells Hospital in Dundee and a prearranged lunch with Ian before my consultation in the afternoon. After parking the car we approached the main entrance of the hospital. We entered into what appeared to be a shopping mall, bright and cheerful, and with a distinctly friendly atmosphere. After traversing miles of corridors and several levels of stairwells we arrive at ward 32 consulting area. We hadn't been sat there long when an elderly lady arrived in a wheel chair to await her consultation. Soon a doctor in a white coat and regaled with stethoscope arrived, asked her name and then proceeded to wheel her off in the direction of a consulting room. Not a porter, not a nurse, but a doctor! Where am I? The appointments where running about half an hour late, it was now passed my appointment time and still nobody else had moved. Then Professor Rankin appeared at reception chatting to a couple of nurses to be offered tea and biscuits from the receptionist. This was like something out of Alice in Wonderland!

Shortly after Professor Rankin appeared and escorted another elderly lady to her consulting room, things were now beginning to move. Then ten minutes or so later and a smiling and very friendly Professor Rankin appeared and escorted us to her consulting room. We were introduced to two medical students before she continued to ask many questions about my medical history, followed by a very thorough examination, even measuring the size of the swelling with a pair of callipers. Next she set out her proposals for my management plan, a CT scan, a bone scan, and an appointment with Mr Whilmshurst, the plastic surgeon plus chemotherapy. It was difficult to comprehend someone was now telling me what they were prepared to do for me without having to ask.

Next I was sent up to the x-ray department for a chest x-ray. More stairwells and corridors, I returned clasping a large brown folder, which I handed to the receptionist. Shortly after, we were recalled to Professor Rankins' consulting room and informed that there were some small areas of concern but she would keep her eye on them. My cancer may be spreading, but now I've someone helping me through this difficult time. This truly is Wonderland.

With Alison away in Spain with Jean, I decided to return with Ian to Yorkshire and await my proposed appointment with Mr Whilmshurst the following week. While at Ian's he received a couple of telephone calls, one from Professor Rankin's secretary, to say that my scans were arranged for the 4th October, and the other from Mr Whilmshurst's secretary, to say that I had an appointment with him on the 28th.

Sep 28th, After an early start for Edinburgh, Ian was able to drop me off at Waverley Station for my 11:10 train for Dundee. Back to Ninewells and my appointment with Mr Whilmshurst. After a few questions and examination and I was on my way to Aberdeen. It was late afternoon when I arrived and too late for my last flight home, so I contacted The Clan Haven for my stopover before proceeding home the following morning.

Oct 3rd, and I arrive back at Ninewells ready for my first scan tomorrow morning at 10am. Again the ignominy of being able bodied and having to be wheeled off for my CT scan. This time not the vile green liquid I was served up at the ARI, but two litres of vile white liquid instead to consume. Next I'm wheeled through into the scanner room, placed on the bed and connected to the plumbing. Again the peculiar warm surge throughout my body and the machine springs to life. Feet first, I'm slowly propelled into the Dr Who machine and retracted. That's it, the scan that I've been waiting so long for. Hopefully it will give some indication of my current condition. Back on the ward and a nurse appeared with a small box with a radiation logo on. This was my pre-scan isotope injection. After a three-hour wait I'm again wheeled off, this time for my bone scan. As I am withdrawn from the machine I noticed a monitor above with two images of my complete skeleton. Spooky. I pack my bag and head back to Aberdeen, again a stopover at The Clan Haven and then head for home the following morning.

Oct 20th , This time I head off for Dundee with Alison for the removal of my lymph nodes and swelling. We arrived in Dundee just before midday and found a pub for lunch before we set off to ward 27 at Ninewells Hospital. Alison had made arrangements to stay at the nurse's residence for the duration of my recovery. Her room was somewhat small but was very handy for her to visit me. We walked across from the nurse's residence and made ourselves known to the staff of the ward. Then started a long procession of both nurses and doctors for my induction. The following morning, I had a visit from Professor Rankin to discuss the outcome of my earlier scans. Evidence was now beginning to indicate a possible deterioration in my health with the bone scan revealing a bright spot about a third of the way down my spine, Professor Rankin did ask if "I had ever had any injury"? "No, not that I can recall". The CT scan also indicated two small areas of interest down my back. All small events at the moment but requiring close monitoring.

Next to appear was Mr Whilmshurst to discuss my operation, closely followed by the anaesthetist. With all this attention it was beginning to feel like a dream. Then at 12:30 it was back to earth with a bump, the theatre trolley arrived. Within a couple of minutes I was in the anaesthetic area having electrode points attached to my chest and a cannula inserted into the back of my right hand. The banter with the nurses and anaesthetist removed some of the tension from what was happening around me, that was until I saw the anaesthetist insert, a large syringe filled with white liquid into the cannula in my right hand. The pain in my hand was unbelievable as she proceeded to empty the syringe. All I remember was the anaesthetist saying "sorry if it hurts", then out like the proverbial light.

Next, someone somewhere was calling my name, "Alan, it's all over your in the recovery room". Where! For a brief moment nothing made sense. Then I opened my eyes to see a smiling face. "It's all over" she repeated as she held my hand and smiled. I felt my eyes moisten, was it emotion or the anaesthetic? By 4:30, I was back on the ward, sedated and tired. The following morning the anaesthetist visited me, followed by Mr Whilmshurst. It transpired that I'd been in theatre for three hours, longer than anticipated and that he had removed my lymph nodes and a tumour from deep under my arm. I was not at all surprised to hear the word tumour mentioned for the first time. He said that it would take a few days before he would have the biopsy report. The report is somewhat predictable; it's the amount of mitoses that will be of interest. Ian and Carol arrived Saturday, and took Alison out for a meal at night; they returned Sunday for a couple of hours before heading off back home. It was a pleasant break to the long endless days. After a couple of days I was shuffling about around the ward, and venturing as far as the entrance mall on level seven. Wednesday was a beautiful, bright and sunny day so I dressed in warm clothes for a long slow walk along leaf-strewn paths around the hospital perimeter. Suffice to say it was very special. The endless days came and went, but the drain under my left arm continued to flow unabated. Friday and a decision was taken that I would be going home Monday without the drain.

Monday 31st Oct, and my drain is finally removed and we are ready for home. After a year of desperation and at times the near loss of sanity, my stay at Ninewells had been something I could have only dreamed about at the onset of my cancer. We arrived home to be greeted by both Alister and Debbie, our supper waiting on the dining room table. After our stay at Ninewells we were now back to home comforts.

Nov 2nd, Professor Rankin's secretary telephoned to confirm my next appointment would be on the 8th Nov on ward 32. I'm to have another scan and chemotherapy on the 9th.

TREATMENT

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