8th Nov 2005. Returned to Dundee ready for my treatment tomorrow, unfortunately I had to stay in Bed and Breakfast overnight, due to the unavailability of a bed on ward 32 until tomorrow morning. 8:30 the 9th, and I check into ward 32 to find it already a hive of activity, I dropped my over night bag off adjacent to my assigned bed and was immediately escorted upstairs for my CT scan. I consumed the same amount of disgusting fluid as for the previous scans, next the pipe work was connected and the full abdominal scan commenced. I returned to the ward where the nursing staff awaited to take a blood sample in readiness for my first dose of chemotherapy. Being the new patient on the ward it was a constant procession of both doctors and nurses to check both my details and me. Last in this long line of visitors was the pharmacist to check on my current medication and inform me that once she had my blood test results then my chemotherapy would then be made-up in the pharmacy.
Before I arrived on the ward all I understood about the side effects of chemotherapy was the possibility of partial or total hair loss after three or four months of treatment. Anything else was passed off as "different people respond differently". During the mornings "coming and goings" it transpired that my treatment was to consist of six, twenty eight-day cycles of what is referred to as the VICE protocol. Finally a canula was inserted into the back of my right hand in readiness for my treatment. I lay back on my bed with all the morning activities swimming around my head with a degree of trepidation of what was about to begin. 12:45 and a nurse appears and asks my name, "Alan…….", "date of birth", "12-7-42". I'm informed that my blood test is satisfactory, and I'm immediately given my first oral medication. Ten minutes later and a bag of glucose is hoisted onto an adjacent stand and the plastic pipe fed down through the pump and the end connected to the canula in the back of my hand to flush the line.
1 o-clock and now two nurses appeared with my chemotherapy chart and a large plastic bag of liquid. Again, I was asked my name and DOB. The plastic bag was then double checked against the sheets and signed for by both nurses before replacing the bag of glucose. Carboplatin was now being pumped into my right arm.
My long awaited chemotherapy treatment had begun. It wasn't long before I acquired my first side effect of chemo, a rather nasty plastic / metallic taste in my mouth. I lay quietly on my bed watching the digits on the counter steadily tick away. Other pumps around the eight-bed side ward would occasionally alarm indicating the need for attention. Doctors, nurses, visitors came and went, all following the strict hygiene regime by washing their hands. Late afternoon and Mr Whilmshurst arrived to check the site of my last operation. It was not yet fully healed but it had been decided that my chemotherapy should not be held up any longer than necessary. With all this fluid being pumped into my system, my bladder was now beginning to feel the effect. My instructions were that when I went to pass urine it had to be put in the receptacles provided and mark it with my name ready for analysis. Unplugging my machine from the electrical supply I shuffled off to the toilet with the pump running on its battery. The difficulty was washing my hands afterwards with half my right hand covered in bandage. Nurses came and went, bags were changed, name and DOB were constantly asked, a routine was slowly emerging as lethargy began to take hold. Cups of tea were routinely offered and my evening meal delivered, all declined as my chemotherapy continued to take over.
About 10:30pm the main lighting was reduced and the curtains drawn around each bed, and just visible above my curtain rail was the ward clock. I watched it drag its hour hand round until 7:00am. The most difficult part is watching the hour hand tirelessly rotating and seeing your life, ever so slowly tic away.
10th Nov 2005. It had been a long difficult night and another long day lay ahead. Breakfast was offered but declined, bags were changed, and visit to the toilet continued at regular intervals. Doctors did their rounds, people came and went and all I wanted to do was sleep, it was not to be. Alarms continued to sound, name, DOB, bag changed. The day seemed endless. Before lights out, Alison telephoned to say that the last flight home on Friday was fully booked and I was now on the 9:40 Saturday. This would entail a stopover in Aberdeen!
11th Nov 2005 8:30 am and the last few millilitres are withdrawn from the final bag. The alarm sounds, this is the end of the first part of this twenty eight-day cycle. A nurse appears, and removes the canula. Next to arrive is a doctor to explain the procedures for the remainder of the cycle. My own doctor has been informed of my medication requirement, the Macmillan ward at the Balfour Hospital has been informed. I was also asked to keep a record of my temperature, as it would help indicate the first signs of infection. Should by any chance I become neutropenic following my five litres of chemotherapy, then I would be put in the ambulance helicopter and flown direct from Kirkwall to Ninewells. At times like these the NHS is brilliant.
Midday Saturday I arrive home very tired with a large brown paper bag full of my medication. Before long the telephone was ringing, family and friends were enquiring about my health. It was now I found another side effect of chemotherapy, although as yet not severe, I found it difficult to concentrate long enough to hold a meaningful conversation. Another side effect was soon to emerge, hand brain co-ordination, writing notes or using the computer keyboard were no longer an automatic process. Sunday morning and the nurse from our surgery arrived to give me the first of eleven daily injections of Lenograstim to boost my immune system. She also checked the operation scar under my left arm, she wasn't sure but she thought that I may have an infection. A swab was taken for pathology, an infection was the last thing I needed. A few days later and we had the results. I had an infection, antibiotic dressings were next applied.
18th Nov 2005 and I attend the Macmillan ward at the Balfour Hospital for the first of many blood tests. The results were not encouraging, my Neutrophils and platelets were low. On day sixteen of my cycle I was due to have a chemo infusion at the Macmillan ward, but because of the infection and poor blood results it was decided to omit my Vincristine on this cycle, but boost my antibiotics. Since my arrival home I had checked my pillow religiously each morning for any indication of hair loss, then on the morning of the 25th November, day seventeen of my first cycle, I entered the shower and proceeded to shampoo my hair. I stepped back into the warm flow of water and rubbed the shampoo firmly into my scalp. Then absolute hell, hair was everywhere, in eyes, nose, and mouth, washing down my body into the shower tray. I stood there motionless and frightened while the rest of my hair washed away, I looked down at my feet and saw what looked like a drowned cat curled around the drain hole.
3rd Dec 2005 and my wound is finally healed.
5th Dec and I return to the Macmillan ward for the final blood test of this cycle to check all the blood components are within the required parameters. The results were satisfactory, so I was ready for my second cycle.
Tuesday 6th Dec and I return to Ninewells ready for my second cycle to commence next morning. After supper, Professor Rankin visited me to discuss my previous x-rays and CT scan. While the x-ray appeared satisfactory, the CT scan had indicated some areas of concern within my chest cavity. I asked her for a possible prognosis, she declined to be drawn but said that there would be a full revue of my situation following my third cycle when hopefully more information would be available. The second cycle continued like the first, but tiredness and fatigue were becoming more evident. I travelled home on the last flight on Friday night, tired and weary, the effects of the chemotherapy more evident than the previous cycle. The nurse arrives Sunday and I commence my Lenograstim injections again. About four days after arriving home, the level of fatigue increases and I find myself requiring more sleep. My ability to concentrate is slowly ebbing away, and the medication for my nausea has little effect. The ever present plastic / metallic taste in my mouth makes food unappetising. The only good thing at the moment is that I have not vomited, unlike some of the unfortunate patients on the chemo ward. Day sixteen of my cycle and I receive my Vincristine infusion at the Macmillan ward, after a couple of days I begin to notice an improvement in both my nausea and fatigue. A long slow climb to a more reasonable level of recovery by the end of the cycle, then I'm ready for another hammering at Ninewells. Cycle three of my chemotherapy was like a combination of one and two.
This is another side effect that I was not informed about, it's accumulative. In this cycle, my Lenograstim is reduced to seven, otherwise the rest of my medication is the same. The middle section of the cycle is becoming more difficult. I feel that I'm sinking into a deeper hole. Physically I'm beginning to shuffle about like a geriatric and mentally am very confused. By the end of the third cycle, I notice the similar improvement as in the previous, but remain on a lower plateau. Also noticeable now is a further reduction in body hair, my eyebrow and eyelashes are also beginning to disappear.
31st Jan 2006, both Alison and I return to Ninewells, I have a scan booked for the following morning before commencing my fourth cycle of chemotherapy. It had been arranged for both of us to meet Professor Rankin during our stay, but at the last minute it had to be cancelled. One of the team did however say that she would contact us as soon as she had seen the results and discussed them with the rest of the team. We arrived back home on the last fight on Friday night, I was absolutely shattered and the stress was beginning to tell on Alison. I poured myself a very large scotch and Alison a large glass of wine. The cycle repeated itself, only the hole I descended into was deeper and darker, and I was spending more time in bed.
Tuesday 14th March 2006. Professor Rankin telephoned with my results, my x-rays were still clear but the CT scan was still a little unclear, it may be that the cancer had spread to my lymphatic system within my chest. "And what of my prognosis"? She said she was sorry but I may only have "two years". It may seem strange but there was no shock, more a feeling of relief. I had spent the first year seeking help and coming to terms with my cancer and now all the parts of the jigsaw were in place, the picture was still not very clear, but somehow no longer mattered. Towards the end of my fifth cycle I had really had enough, how much more punishment could my body take? I discussed with Alison and the two boys about stopping my chemotherapy and abandoning my sixth cycle, all were of the same mind, it had to be my decision. I had one last blood test appointment at the Macmillan ward before this cycle of treatment was complete, so I decided to keep it and have a word with the senior Macmillan nurse before I came to a final decision. It was pointed out in our discussion that I may regret in the future not having completed my full treatment, I was also beginning to feel I was "letting the side down" after all that had been done by everyone to get me this far. I agreed to have my last cycle, No pain no gain!
By the middle of my final treatment I was destroyed and spending ever longer in bed. Everything I did took more and more effort. By now I was devoid of all body hair and my skin has a waxy appearance. Not only did I feel dead; I was beginning to look it! Over the next couple of months, I began a slow recovery. First I was able to walk the dog around the garden, then to the end of the drive and finally, to the end of the road and back, two miles! During this period, hair was now beginning to reappear, a degree of normality was returning but the fatigue was ever present.
28th June 2006 and I return to Ninewells for a follow-up examination that includes ultrasound scans and a MRI scan on my spine. The previously identified hot spots on my spine had remained unchanged, the belief now was that these were areas of osteoporosis. Since the removal of my left axilla lymph nodes, I'd been experiencing considerable pain and discomfort from the build up of fluid under my arm. It was now beginning to feel like a half inflated balloon. The hospital was at first very reluctant to drain my arm so as to reduce the possibility of infection, eventually they conceded to my request, the relief was indescribable. There is a trade off between possible infection and pain, for me it's pain relief every time. Throughout my chemotherapy and afterwards I had my arm drained at regular intervals.
2nd Aug 2006 and I awake unwell and unable to climb out of bed. Alison called the doctor and both temperature and a blood samples are taken. Early the next morning and I awake wet though with sweat. Again Alison called the doctor, he in turn called the ambulance, and within the hour I was in the Balfour Hospital connected to an antibiotic drip.
After three days, my temperature is down and I'm allowed back home. The next ten days I'm confined to bed continuing my antibiotics orally. At the end of my treatment, I notice the swelling under my arm had all but disappeared, and I could now feel a small hard lump, was this scar tissue that the surgeon had seen on the ultrasound or was it a reoccurrence of my cancer?
15th Sep 2006 and once again I am wheeled into the operating theatre at Ninewells for the removal of my lump. After a few days back home, Professor Rankin telephoned to say that no cancer cells had been identified in the tissue sample. This was the first good news we'd had for a long time. The first twelve months since my cancer was diagnosed had been very difficult, not just for the two of us but also for family and friends. It's the unknown and uncertainty that makes decision making virtually impossible.
When I transferred to Ninewells hospital I was diagnosed as "at least stage III", the future was now less certain and the prognosis poor. While my treatment at Ninewells had surpassed all that I could have hoped for, we had considered moving south to be closer to family and friends for whatever time remained. On one of my many visits to Professor Rankin, I asked if she would continue to treat me if we were to return to England, she answered in the affirmative, this tipped the balance making the decision for us.
Saturday 28th Sep 2006 and we leave our beloved home, a special place for all the family, and full of so many memories. Orkney, our home for the last fifteen years was slipping away as the ferry headed south, the north coast of Scotland was now clearly visible in the early morning light.
29th Nov and we arrive at the clinic of Professor Rankin for a routine check- up. My only concern since my last visit was the discomfort I was now experiencing around my left shoulder. After a meticulous check up, she felt there might be something there that required further investigating, a date for another CT scan was arranged for 21st December. This was to be my sixth scan in the last fourteen months of treatment at Ninewells, far more than I could have dreamt of at the onset of my cancer.
I look back at the time when fear was my companion, and the struggle I had to receive my first scan sooner than first offered, and the refusal of a second at Aberdeen. Where would I be now without the help and support of my family in pursuing a second opinion and finding the best treatment centre possible?
4th Jan 2007 and I receive the results of my scan, all clear. After a long wait over Christmas and New Year it's a relief to have good news again, we can now plan a little further ahead. A very Happy New Year!!!!
27th March 2007. We travel back to Dundee by car on a bright spring morning for my quarterly examination with Professor Rankin. This visit required a stopover so as to facilitate both the examination and record a video interview regarding my cancer, then returning home the following day. The video would then be used as a teaching aid for medical students and doctors about cancer and it's treatment from the perspective of both patient and family.
We arrived at midday and contacted Professor Rankin's secretary who informed us that the interview had now been arranged for three in the afternoon, allowing us plenty of time for lunch. Shortly before the appointment we met Professor Rankin in her consulting room on ward 32 and went through a list of possible questions she would ask and reminded us that, "a few of my students will be present".
We were escorted through miles of corridors to the University section of the hospital into an area of laboratories and offices. We literally squeezed ourselves into a small lecture room occupied with "a few of my students". It was a little daunting making our way through to our three empty seats in front of the video camera, in a room that was full of more than forty students, sitting or standing in every available space. Professor Rankin's casual manner of asking the questions quickly put us at ease. Equal time was devoted to both of us for answering the questions and giving our own views and opinions of past events. At the end of the interview the students were given the opportunity to ask their own questions, suffice to say that they were a very enthusiastic group. It was a very interesting hour and satisfying to know that another influx of potential doctors was now aware of MCC.
We returned to Professor Rankin's consulting room for my physical check-up. All went well until Alison brought Professor Rankin's attention to the dark spot on my nose. It had been there a couple of years, it's colouration darkening very slowly during that time. After a quick examination she declared it that it looked like a Melanoma. After a quick telephone call I was on my way to see Mr Wilmshurst.
Mr Wilmshurst was not sure if it was a Melanoma but said he would find time do a biopsy the following day. This was rather short notice has we had a holiday arranged for two days later. Having had the spot for about two years I felt that the biopsy could wait until we returned, so a date was duly arranged for the beginning of May.
May 4th and I'm back to ward 27 in a side room ready for my "nose job". After a constant flow of doctors and nurses had finished taking down my details a nurse finally arrived with a pair of surgical socks and a gown, " they're about ready for you in the theatre" she said. I was somewhat surprised to hear the word theatre as I thought the procedure would have been carried out in a consulting room. A porter with a wheelchair took me to the anaesthetic room to have a final BP check. Mr Wilmshurst arrived to explain the procedure that all he required was a small deep section from the darkest area of my spot.
This was the first time I had arrived in an operating theatre while conscious. I was surprised to see so many people involved. Once on the table a cover was placed over my eyes before the overhead lights were swung into position, next a sharp prick as the anaesthetic was injected into my nose. After only a few minutes the procedure was completed and I was permitted off the table and back into my wheelchair. I was returned to the ward and after half an hours rest my BP was taken again, " that's fine, you can go now".
Due to a faulty telephone answering system it was not until the 20th May that I was able to speak with Mr Wilmshurst. My biopsy results indicated my spot was a pre-malignant Melanoma. Before removing the remaining dark area he suggested I meet one of his colleges Dr Fleming who was having success using Imiquimod Cream in treating areas such as mine. If that failed then I would require an excision and a skin graft.
The team at Ninewells have been magnificent in co-ordinating the administration of treatments to coincide with clinic visits on the same day so as to avoid unnecessary travelling. This time it was not possible to arrange a visit to Dr Fleming's clinic and have my next CT scan on the same day. The best that could be arranged was Dr Fleming on the 18th June and CT scan on 20th. Rather than book-in somewhere for a couple of days we decided to take a holiday cottage for the week at Alyth, a thirty minutes drive from Dundee.
We arrived at Ninewells on Monday 18th June for my mid-morning appointment. Like most clinics you seem to spend more time waiting than time spent with the consultant. Dr Fleming explained about the medication and procedure. I hope the cream works, cancer is starting to become tiresome. We spent the rest of the day looking around Captain Scott's boat 'Discovery' in its dry dock in Dundee.
20th June 2007. And I'm prepared for my sixth CT scan at Ninewells. I shuddered when I saw the nurse arrive with a litre of barium, it's the most imaginably vile of all liquids to consume. This time, rather than sip the disgusting stuff I decided to drink it as quickly as possible so as not to prolong the discomfort. Ten minutes later the nurse returned and was surprised to see an empty bottle. "You should have consumed that over a period of twenty minutes" she informed me, " never mind I'll get you another glass full!" By the time I arrived at Professor Rankin's consulting room the results of my scan had been entered into the computing system. "Pleased to tell you its all clear", she said with a broad smile.
August 2008. I had intended to periodically update my site, but now find the detailing of events less important. I am now getting on with the rest of my life. I still have my three monthly checks and six monthly CT scans, the last being July 2008. Again, a clear result.
It is now four years from the onset of my cancer and so much has happened in that time. It as been a long, and at times a very difficult journey. The stress and possibly depression have now gone, the thoughts of cancer are never far away but I can now cope with my situation.
October 2009. June, the anniversary of the initial appearance of my cancer came and went without any celebration, next the 6th of September. A date burnt in my memory, the day my cancer was confirmed. That was all five years ago, but many of the events that occurred over this period remain as if they were only yesterday.
I continue my regular visits to Ninewells Hospital having ever more x-rays and scans. The total to date is 10 CT scans, 2 MRI scans, and 3 Bone scans. I've lost count of the chest x-rays. I look back with dismay at the treatment from Dr Fay regarding my requests for a second CT scan back in 2005. How things changed when I arrived at Ninewells and became a patient of Prof. Rankin.
I will endeavour to update this site periodically. (Last update....October 2009)
Epilogue
When first diagnosed with my cancer, life changed, and also that of my wife and family. I find it difficult to express in words my fears, anxiety, and frustration in not being able to find answers to the many questions that constantly flooded my brain. Like many others I turned to the Internet, in 2004 there was little to be found on MCC. Many of the sites appeared to be saying that you may possibly have as little as six months to live. What I was seeking, were statistics on treatment procedures and life expectancy, but because of the rarity of MCC I was unable to find any significant data. This only added to the frustration.
Looking back at this initial period now, the best I could have done was seek the help of a specialist cancer councillor, someone who could answer just a few of my many questions and advise me on decisions I would have to face in the near future. I knew from the onset that my condition was terminal and any treatment was only going to delay the inevitable, but was prepared to undergo chemotherapy or radiotherapy if it was going to give me a year or two more of quality life. I have now come to terms with my condition and know there are no real answers to all the questions that troubled me for so long. There are so many variables to the cancer equation; age, physical fitness, type of treatment, size of tumour, and no doubt your mental approach make all of our outcomes different. All I seek now is that today is as good as yesterday, and tomorrow wil be as good as today.
