CancerGuide: Inspirational Patient Stories
My name is Richard Watkins, a non-smoker (for over 20 years), retired and living in Britain, about 25 miles east of London. My story began in early 2002 at 61 years of age. I was very fit, playing Racquetball, Tennis and using the Gymnasium 2 or 3 times a week. My pulse rate was low (and still is) with a blood pressure to match. Never been in bad health with the only significant operation being an appendix removal in my 20ís. Then suddenly I had blood in my urine, I needed my kidney removed and I had cancer! There is some evidence to indicate that my fitness is helping me through the problems but it certainly did not help to avoid it! I understand that Renal Cell Carcinoma mostly hits males in their 50ís and 60ís and there is no known reason. I think it helps to know that it is not your own fault.
On important issues I am the sort of person who does not simply accept what I am told; I need to feel that itís right for me. So when I learned that I had Kidney Cancer I looked for information and help from any source. There was a lot of good, basic information available but I needed more. Then I found Steveís site! It was fundamental in giving me an understanding of the various treatments and an appreciation of the downside. The research, statistics, practical ideas and personal experiences were all very useful. In addition, my wife and friends proved extremely resourceful, helpful, and supportive throughout my experience (I owe them a lot). All of this I used to give me an understanding of what to expect, the pitfalls to avoid, and help me through the treatment and administrative processes.
In Britain we have two medical systems: the National Health Service (NHS) which is Government funded and free to patients, and the Private system where, unless you have health insurance, you pay for treatment without any subsidy. Doctors can work in one or both of these. The NHS must provide medical support for all who need it as well as full emergency services. Partly because of this, and its institutional culture, it is notorious for long delays and cancellations.
The Private system would have been quicker, but I chose the NHS. I'm not sure why, but I think it was for two reasons:
During the first stage of my journey, the diagnosis, Kidney (and Spleen) removal, I was able to reduce the duration by more than 6 months. In essence, I found that the staff really wanted to help but had become stuck in the routine. I simply put forward ideas that would "help them to help me and help themselves." This time saving may well have been critical to the outcome.
When cancer was confirmed I was given "6-9 months to live if I was very lucky" and offered Chemotherapy, which is not the best treatment available. As a result my friends helped me to find a suitable doctor for a second opinion. This led to the identification of another NHS doctor and hospital for the right treatment and my acceptance and transfer. An initial scan confirmed cancer in my neck lymph glands and 3 other growths in my belly area. An operation was conducted to remove the neck glands and, after about 8 weeks, another scan was done with a view to preparing for Immunotherapy treatment. This scan showed that a "Spontaneous Regression" had occurred; the growths had reduced naturally! Subsequently the latest scan, December 2002, indicated a stable state and I will continue to be regularly monitored. The hospital consider this a rare event, I am very lucky indeed . It is the best Christmas present I could have imagined!
Understanding the medical situation helped me get the right treatment. I also maintained a diary, which helped me focus on saving time in the administrative process. My General Practitioner (GP), and the NHS, also encouraged me to look at complementary therapies. The next section gives some notes on my Complementary therapy and is followed by my Diary extract giving more information on my experience, actions and events.
A lot of confusion exists about what is meant by Complementary and Alternative therapies. What the British medical profession mean by these terms is:
Unless all else failed, I was not prepared to consider Alternative treatment. However it was natural for me to consider Complementary treatments since my wife has had a long relationship with a therapist (mostly Diet and Vitamins) and she, and her GP, both feel she has benefited significantly. In addition, whilst I was in hospital I was prescribed vitamins and urged to exercise (mostly walking and stretching). On leaving hospital, the NHS and my GP continue to advise me to "eat well" and are also encouraging me to "build up slowly" to my previous activity level. They also gave their approval when I chose to take Chinese therapy, both Acupuncture and Herbal treatments. I was interested in this since some friends had used it and most, but not all, had felt that they benefited.
Ultimately I adopted, and still continue with, the following:
Vitamins: Vitamins C, E, Selenium, and Multivitamins as recommended by my wifeís therapist.
Diet: I was not comfortable with the therapists initial recommendations since, quite simply, I was unlikely to keep to them! So we agreed a more practical approach with some easy to follow guidelines. The aim is a more "balanced" diet and an attempt to cut down on all chemicals and additives.
Exercise: After the Kidney removal, I immediately started regular walking, building up to about an hour most days. I borrowed a friendís dog and this helped a lot! After my neck operation I consulted a rehabilitation specialist at my club. Together we developed a programme that should restore full movement to my shoulder (temporarily impaired by my operation) and subsequently to full Racketball fitness.
Chinese therapy: At each visit a specialist ("Doctor") examines me first and then decides on the details of the treatment.
Acupuncture: The first session was simply "interesting" but subsequently I began to really enjoy it. It was wonderfully relaxing and refreshing both physically and mentally. However, as my health improves it seems to be having less impact.
Herbal medicine: Tablets, powders and dried herbs. They have definitely helped on two occasions when my bowels were causing problems.
In summary, it is well known that good diet and regular exercise are beneficial, Vitamin supplements are thought to be beneficial and Chinese therapy has been around for a few thousand years. So has it all helped me? Well there is no proof that it helped in directly tackling the cancer but I did, and do, feel better. Most importantly it is helping me psychologically. I feel that I am really doing something to help myself fight this thing − I am part of the team trying to solve my problem.
January 2002: When shaving I notice a lump in my left neck. Think nothing of it but eventually get round to seeing my GP who doesn't see any need to worry "itís probably a cyst."
February: Start to see blood in my urine.
13th February: See the emergency doctor at my GPís practice and, to save time, take a urine sample with me. This is sent for testing.
18th February: My GP confirms all is ok apart from the blood! Am referred to my local NHS hospital by letter - yet they have linked computer systems! They will write with an appointment.
Late February: Phone the Consultantsí secretary. They have received the letter, the process takes 4 to 8 weeks and they will write with a date. Discussed the possibility of filling a cancelled slot, suggesting that unused slots waste valuable time and that I will come at a moments notice. How can we help each other? The result is an appointment in just over one weekís time.
19th March: Hospital gives me Ultrasound and Endoscopy. The left kidney appears deformed - a CT scan is now necessary. They "will write with an appointment." I press for a rough idea when and am told it will be about 21 to 32 weeks!
20th March: Phone secretary to find ways of reducing the delay including having the scan done privately. This is possible so I contact the Scan doctorsí secretary and get a list of hospitals. Phone around and arrange scan for 3 working days time! Personally collect the necessary forms from the NHS and deliver them to the scanning hospital.
25th March: Receive a call that the machine has broken! Phone around and arrange an alternate hospital for 3 days time. Personally drive to both hospitals and transfer the documents.
28th March: Scan performed. Have saved 20 to 31 weeks on Scan alone. Cost £500 − well worth it! Itís now Easter weekend, next working day will be 2nd of April.
3rd April: Allow one working day and phone the consultants secretary. The results are through but need an outpatientís appointment to get them (4 to 5 weeks!). Once again offer to fill a vacancy and am booked for 2 days time! ("Just turn up, you'll be on the computer list"!). Timesaving is now running at 23 − 34 weeks.
5th April: Morning outpatients. Kidney tumour confirmed and an urgent operation is required. They will write (urgent?) with a date. That afternoon I phone the secretary to find out the waiting times. Am advised that a Committee schedules all operations and I get the name of the secretary. They meet on Thursdays; the earliest information will be next week.
12th April: Phone the committee secretary to check on yesterdays meeting and am told that it had been cancelled. They will meet next week as usual.
19th April: Phone and am told that I am provisionally scheduled for the 29th May. Tell her that I am available should there be a cancellation and this is noted on my records.
22nd April: Receive a letter (dated 9th April!) advising that my first outpatientís appointment for initial tests was confirmed for the 3rd May! This actually took place on the 19th March. This is a gain of another 6 weeks. Am now running with a timesaving of some 29 to 40 weeks !
26th April: Receive a phone call advising me that I can now have my operation 2 weeks earlier, the 16th May, "if I can make it." No problem! The gain is now 31 to 42 weeks!
30th April: Receive confirmation letter with a booking for the pre-operation assessment clinic in 8 days time.
8th May: Attend clinic. Like all NHS patients am advised that the operation may be cancelled at any time should there be a major incident or Theatre delay etc.
15th May: Phone hospital to confirm, turn up on time and am allocated a bed.
16th May: Operation done. I am told my Spleen was also removed!
23rd May: Am advised that the cancer has spread. I will be referred to a Cancer specialist who is duty bound to see me in 1 to 2 weeks. Try hard to book a date before I leave but fail.
25th May: Discharged from hospital. Advised that a post-operative check will be done in about 4 weeks.
30th May: Have not heard about the follow-up appointments so phone to check.
31st May: Attend the Oncology clinic and am given a dismal prognosis. I will be given Chemotherapy but my life expectation is 6 to 9 months if lucky and 2 years if extremely lucky.
Early June: At this point I am at my lowest ebb. I cannot simply accept this situation without satisfying myself that there is no other way. The key issues are:
Things get hectic in these next two weeks but the essence is:
Make several phone calls to get my medical record. This cannot be sent direct to me but must be posted to my GP. They eventually agree to a Fax and I collect it. This shows that I have "Renal Cell Carcinoma grade 4, metastatic." All my enquiries indicate that Chemotherapy is not the best treatment!
Looking for a second opinion I contact the Private Patients Plan (PPP) insurance who fax details of likely Doctors the same day. My GP selects one who also works in the NHS, at the Royal Marsden hospital in London, and writes on my behalf.
A friend finds a doctor working in both the NHS and Privately. Phone his secretary and get appointment for the next day! He confirms that Chemotherapy is not right but that he cannot treat me for local NHS political reasons! Recommends staying with the NHS and suggests a Doctor, also at the Royal Marsden, which specialises in cancer. Sends fax the next day.
14th June: One working day after the Fax I phone the Royal Marsden and find that both referrals have reached the desk of the right person! Am offered an appointment in 11 days "since it will take time to get your notes transferred from the other hospital." I offer to collect them and bring them with me and get an appointment in 4 days! Another week saved .
18th June: Outpatients. They confirm that treatment will be based on Immunotherapy (and I could be offered Clinical Trials). As a first step they will take a body scan and a bone scan. These are booked while I wait and to reduce my travelling they will be done on the same day (nice touch). Confirmed for 2 weeks time.
3rd July: Body and Bone scans done.
5th July: Attend outpatients for follow up on Kidney operation. All OK and am signed off.
9th July: Royal Marsden Outpatients: Doctor apologises that full analysis of scans has not been done. However the initial analysis shows:
They will phone me with results of the full analysis as soon as they are known. I also indicate that the Lump in my neck is beginning to bother me.
11th July: Doctor phones me - the bone results are OK. We agree that surgery on the neck is the first choice since it might worsen and cause complications before therapy has any effect. The Surgeon needs to confirm it is possible and he is on holiday for the next two weeks, but he will see me tomorrow if I can make it. I make it − this is "professional" time saving!
12th July: Surgeon confirms that neck is operable. A date of 14th August is booked while I wait.
15th July: Phone surgeonsí secretary and advise that I will fill any cancelled slots. Makes note on my record (a recent cancellation had wasted much valuable time).
14th August: Hospital admission.
15th August: Operation done.
19th August: Leave with Outpatients appointment booked. A friend drives to London, with my wife, to collect me. On the way home we lunch in a pub garden. Excellent therapy! /p>
30th August: Surgical Outpatients. All OK and leave with my next appointment booked.
13th September: Outpatients. Am signed off from surgery unit. Arrive home, phone Cancer Team and am booked for a morning Scan and an afternoon Outpatients to get results.
1st October: Morning Scan done. That afternoon an initial analysis indicates the neck is now clear and the remaining growths have reduced by 50%! Am told that this is rare. They will phone me when full analysis has been done. I request a bone scan to confirm that this is still clear. This is booked while I wait.
8th October: Bone scan done.
10th October: Doctor phones me to confirm both a clear bone scan and the reduced growths. It appears to be a "spontaneous regression" so they intend to leave things alone and conduct another scan in 2 months. "Carry on doing whatever your doing − itís working! " A date is booked for both the scan and the follow-up Outpatients appointment.
5th December: Body scan done
10th December: Outpatients − Scan confirms no change. By asking the right questions I find out that two of the three growths were glands, enlarged by the cancer, and that the 50% reduction had returned them to normal size (although they could still contain cancer). The third shadow could be trauma from the Kidney operation (letís hope so). This "spontaneous" event is so unusual that no forecast can be made. I will continue to be monitored and the next scan is booked for 3 months. This is the best Christmas present I could have imagined!
If you would like to contact me please feel free to send me an e-mail at [email protected]
This CancerGuide Page By Richard Watkins. © Richard Watkins
Page Created: January 15, 2003, Last Updated: January 15, 2003