13th October, 2016: Update.
I have this day visited the Leicester General Hospital for my annual check-up. After a long absence, I was again to meet up with my Consultant, Mr Roger Kockelbergh, the very clever man who was to finally remove my bladder (Cystectomy) in 2009. He was there today to inform me that he was most pleased with my progress and gave me the wonderful news that I was now medically all-clear; I do not need to attend any longer on an annual basis.
In passing, as a great thank-you to this skilled surgeon who carried me through, I would draw readers’ attentions to his website in aid of his fundraising efforts
ANYONE FOR CLARET?
From many quarters I am frequently asked to write about my recent experience of dealing with cancer following a ‘successful’ personal Radical Cystectomy – the complete removal of my bladder. I am sometimes a little surprised at this great and global interest in the matter of cancer and the suffering caused by its comprehensive hoard of pernicious forms and guises, but it is a well-known fact that people do genuinely wish to know and perhaps,understand as much as they can of this killer within our midst. Of course, this interest relates directly to the worrying truth that the majority of us, especially the older folk amongst us, are likely to be visited by this or that category of tumour which as I well know, due to my present state of well-being, can increasingly now be overcome in the immediate personal battle, yet steadfastly and unmercifully this destructive blight remains overall as unconquerable as ever in the all-out war.
Nurses, Consultants, charities, health clinics, schools, the media and many other bodies frequently do request survivors of this ruthless killer to ‘tell their story’ and of course, at the end of the day a willingness to learn must clearly be a benefit. As a paid-up member of Action on Bladder Cancer, I am happy to recount my personal ‘journey’ for the benefit of future readers and I do so with the hope that my small contribution might assist others in understanding this pernicious and persistent scourge – so here I am.
Why me? Well my friend, my consultant actually, happens to be cognisant of what I have been through and is aware that I like to write, so it seemed to him an obvious request to make of me. I am in no way medically inclined, nor am I particularly interested or knowledgable in this particular branch of the sciences and apart from a few words like ‘Cystectomy’ above – which is one of the few that I now remember – I will not be relying on tracts of technical descriptions or the production of medical data and diagrams. What I hope to achieve is to transmit to the reader in a chronological and workaday manner, the relevant moments of the journey between my initial, scary discovery through to the welcome visits of the lovely local nurses who came to pander to me at my home when the job was completed – if the job ever is completed!. Of course, none of us are that positive in the belief that any such cure is ever complete, thus, those of us lucky enough to have seen it through still have the need to be checked periodically to assuage any doubts.
Let me start at the beginning when, around four years ago in the very small hours of another freezing morning when I reluctantly made yet one more ritual journey across a cold landing to my bathroom and it is without doubt that I would have been again bemoaning the fact that I was being forced to make these little nocturnal trips, increasingly against my will and more frequently with the onset of ‘old age.’ I was about 67 years old at the time and from my regular meetings with friends and colleagues I was fully aware that I was not alone in becoming involved with nature’s annoying way of ensuring that one doesn’t sleep right throughout the night, but on this occasion, being just about one tenth compus mentis and leaning against the wall for support, I happened to glance downwards and was surprised to see an amount of what appeared to be blood in the cistern below me. Automatically and not thinking with my usual alacrity (!) I flushed the cistern and so was unable to check for sure, so I merely cursed and placed an empty jar handy before returning to the comfort of my still-warm and welcoming bed.
A few hours later and by then it being daylight on a fine and sunny morning, I returned intrepidly to the bathroom with jam-jar poised. To say the least, I confess to being a little scared to see what might emerge from my body and sure enough, my urine was indeed bright red. Having succeeded in securing a sample in my jar, I was to later comment that the contents had the appearance of red wine and ever since, this has become known as my ‘claret moment’! For the record, there was no physical or mental pre-warning of this state of affairs, no earlier soreness, pain or any other indicator that something might be amiss, but suffice to say that with swift and nervous encouragement from my good wife and with all manner of divers theories swilling around in my head, I was to later present myself at my doctor’s local surgery. “Nothing to panic about just yet, let’s have the contents analysed and be guided by that for starters,” was the general and uplifting gist of my prognosis that day and so we waited until a couple of days had passed when it was decided that I should perhaps attend for a biopsy, an initial scrape around, for the purpose of securing samples for forensic analysis. So as I remained in abeyance my mind worked overtime.
My GP was not yet about to guess what was occurring within my system, but although urine is connected with several of the vital organs of homo sapiens, the odds supported the suggestion that the trouble probably lay confined within my bladder or possibly my prostrate – or both – but the best money advocated that I might have developed a tumour in my bladder. It was at this early time, during the moments of speculation, that the first of several lessons were to be learned, perhaps not for me but for others who might one day be placed in the same situation. I was required to chose at which hospital I would like to be examined and naively I chose the very small local hospital, mainly because it was nearby but after around a week I was informed in writing that there would be a waiting time of some 12 weeks – wow, but a lot can happen in 12 weeks! So back to my GP and somehow, during our discussion, I seemed to have accepted and concurred with the concept of an immediate private consultation and after all, what is money at a time like this? Within a couple of weeks I was to present myself at the BUPA Clinic in Leicester where I undertook several preliminary checks. I remember the occasion very well as Manchester United were beaten by Liverpool that Wednesday evening – a very rare event even then – and my consultant turned out to be a fan of the ‘Merseysiders’; no wonder we didn’t get on! Within another couple of weeks I was at the reception desk of the private hospital where I was required to turn over a little matter of £1,000 of my hard earned cash before proceeding further to the theatre where the biopsy was carried out.
After a minimum dose of anaesthetic, a probe was passed down through my urethra and directly into my bladder, which I am informed is similar to the inside and roughly the same size as a tennis ball at its smallest; of course it is capable of stretching to twice this size in the exigencies of its daily – especially on a Saturday night – duty. The probe is a delicate little tool like a swiss army penknife, carrying a torch, a cutter and a grabber for retaining any samples removed, not to mention a miniscule CCTV camera to assist with projecting the operation on to a screen. As simple and undemanding as this small venture was, there was residual pain which I was suffer during my overnight stay which mainly related to hot fluids passing over the scraped area, but all I had to do now was to wait for the forensic results of the laboratory tests.
‘Small But Nasty’.
At my next visit I was given the news which chills us all; affirmation of the presence of a ‘killer’ in one’s body, the existence of “C’, the word we have always shied away from using in polite society. My Consultant was quick to reassure me that my personal trespasser was but a little chap at the present time, but on the other hand and importantly, it was potentially extremely aggressive. On the back of an envelope he had sketched a perfect circle about the size of a tangerine and there, marked in red biro within it, was the tiniest little cross which apparently marked the spot. During a tense meeting at which my wife Lynn was present, my options were played out; there was to be no emergency action, nothing needed to be rushed and a variety of future feasible procedures were explained, together with the presentation of copious notes and printed matter to peruse at home. At the end of these preliminary consultations, the full panoply of social care and support for victims is commenced and we were introduced to the dedicated nursing team which would take me under their wing from this moment on.
My original Consultant was Mr Paul Butterworth, MD FRCS (Urol.) and having explained facts to me, it was decided that I would undergo a course of BCG treatment. A so far unproven path towards the destruction or at least, a degree of control of the tumour, without the need for surgery, it was considered that I would be suitable to at least try out BCG. Not wishing to be too detailed or technical about the terminology of this treatment, Wikipedia tells us that:
‘… BCG ((Historically Vaccin Bilié de Calmette et Guérin commonly referred as Bacille de Calmette et Guérin or BCG) is used in the treatment of superficial forms of bladder cancer. Since the late 1980s, evidence has become available that instillation of BCG into the bladder is an effective form of immunotherapy in this disease. While the mechanism is unclear, it appears a local immune reaction is mounted against the tumor. Immunotherapy with BCG prevents recurrence in up to 67% of cases of superficial bladder cancer.
This treatment is not used universally and there are certain parts of the country where the path is directly towards the basic option of physical removal of the tumour, complete with the bladder in which it is – for the time being – confined. Brutal and crude though this method might seem in the 21st century, it is a fact that after some three or more decades no great steps have been made in its improvement or lessons learned. Suffice then for me to say that for about 2 to 3 years, I attended on a regular basis to accept my regular dosage of BCG, in liquid form akin to the viscosity of say, hand-wash lotion. This concoction was forced externally down the urethra and directly into the bladder where it would remain for two hours to do, or not, its business. A most undignified and unpleasant ritual which was terminated by a red-hot pee, followed by a cup of tea and a slice of toast – all for free on the NHS and all administered by a wonderful bunch of nurses. But the utilisation of BCG has its limitations and one of the main ones is that there is a frontier to the number of times that a forced entry can be made the wrong way down a penis and somewhere in the middle twenties is considered to be sufficient to prevent unnecessary damage. It is then a case of, if it has worked then fine, but if your unwelcome and potentially lethal freeloader, clinging on to the wall of your bladder (somewhat akin to the underground sewers of a large city?) has been unimpressed with a regular soaking of BCG and everything else I can throw at him, then I’m afraid that it heralds the portent of a visit to the surgeon’s table.
This next particular time in my life was a watershed event for me and today it still remains a vivid memory of the whole exercise. For over two years I had attended to receive my BCG and between the doses I had had been checked internally for any signs of advancement or whatever. On each check-up I was told cheerfully by a variety of technicians that the bladder wall was clean apart from small areas of scar tissue from previous scrapings. The nurses on the day-visit ward and almost everyone concerned was convinced that the problem was behind me and although I had once watched on the CCTV, I have never seen any photographic or other evidence of its existence. But so it was on that dreadful day when, almost three years after my initial discovery and coming to the end of the recommended number of doses, I attended for a routine biopsy and when the man in charge, peering down his periscope at the inside of my bladder made the brief comment of “Oh Oh”, I knew exactly where my destiny lay. The tumour had apparently re-raised its ugly head and rather than be released from my torment, I was embarked on the first stage of my way to surgery. I had been briefly primed at the outset that the current method was to physically remove the bladder and then to rearrange my inside plumbing to cope with its absence, but having been told these basic facts, I was then advised not to dwell on the subject in case it never happened. Well now it was about to happen and I needed to be brave.
CHEMOTHERAPY ET AL!
As I write about this next chapter of my experience, my mind goes through the horrible process of recalling bitter memories of languid summer days spent in that special room set aside at Leicester Royal Infirmary for the purpose of Chemotherapy. As I compose these words I feel an up-swelling of nausea which forces me to take a break. Mr Butterworth had confirmed my recent prognosis and commenced with his briefing on what was to be the next stage of my treatment prior to Cystectomy, following which he handed over my destiny to the very safe hands of Leicester consultant Mr Roger Kockelbergh. (Chair of the Urology SSCRG, Clinical Director, Consultant Urological Surgeon. See this🙂 I was assured Chemotherapy, that universally despised treatment was necessary in order to concilliate the tumour in preparation for its obligatory removal – complete with my bladder – from my ageing intestines, to prevent it from running amok. I never really did appreciate the reason for my drawn-out attendances at the ‘Chemo’ ward with its resultant devastating effects on my body and mind, but it did cause me to muse that from then on it would be just a straightforward case of removal, like having one’s molars pulled out of one’s head. But attend the sessions I duly did and I should perhaps share with you at least a little of my experience.
The Chemotherapy ward at the Leicester Royal Infirmary is like no other place that I have yet visited within a hospital. When I walked through the doors for the very first time, I remember a vague and lingereing whiff of chemicals in the air and surrounding the busy reception desk were a large and motley bunch of people, mainly elderly and in various stages of dress, these being the patients and although mainly of retirement age there was a diverse mixture which included teenagers and even the very young. A very relaxed atmosphere existed and this is the place where the nurses are as close to angels as one would like to think of in such establishments. Of course, this is their speciality and they do it extremely well. The large room is laid out in the manner of a rest room, not unlike the reception area at a large airport where there are sufficient comfortable chairs and the tables all bear bowls of fruit and large jugs of drinks for the use of all. Sandwiches and similar snacks are provided for the general comfort of those attending and it is all at no further cost to the patient. Intertwining amongst the awaiting clients, nurses are constantly moving about carrying trays of what turns out to be the ingredients which have been individually prepared for the waiting patients, carefully measured doses of the dreaded ‘chemo’ and all of the plastic bags and rubber tubing to do the job.
Each individual patient present at any time is assessed as to his or her personal needs relating to the dosage or type of fluid considered necessary and the type of target to which it will be addressed. Some people are in their third and fourth years of treatment whilst others like myself are just commencing. If you ever have to attend such a social gathering of unfortunate victims, try to talk about anything other than chemotherapy or why you are there, as there are some horrendous stories just desperate to get out, often to gain kudos and respect for their desperately valiant tales of woe. In a shop nearby one can purchase headwear, hats and even wigs for the purpose of maintaining as attractive a social appearance as possible whilst your hair commences its departure from your head, to fall out in clumps and flow frighteningly down the plug-hole in the sanctity of your own bathroom. A visit to the hospital can be for as little as a half-hour session or as with my personal case, over nine hours can pass as the measured dose of infernal liquid is dripped through your body and then purged away with a dilutant. After a long session, five and more days can be written off, spent at home in a catatonic state of uselessness and helplessness, I remember telling my wife as I curled up in a ball on the couch that I felt like a slug or similar, waiting under a cabbage leaf for the night-time to arrive. I hardly bothered to eat, read, or do anything remotely useful or energetic, just wished away the hours. Then, just as things were feeling so much better, off I would go again on another 40 miles round trip to get another dose and five more days of catatonia. The awful thing about my experience was that according to what I was told, my dosage was pretty small compared with many of my fellow travellers, so I can only imagine the horrific scenarios experienced by those poor souls. I will leave the matter there.
OPEN RADICAL CYSTECTOMY FOR BLADDER CANCER
To save any blushes in my promise to write a non-technical account, I have downloaded a piece direct from the Web MD website. Much more can of course be found with our old friend Google.
Cystectomy is the surgical removal of all or part of the bladder. It is used to treat bladder cancer that has spread into the bladder wall or to treat cancer that has come back (recurred) following initial treatment. There are three types of cystectomy:
- Partial cystectomy is the removal of part of the bladder. It is used to treat cancer that has invaded the bladder wall in just one area. Partial cystectomy is only a good choice if the cancer is not near the openings where urine enters or leaves the bladder.
- Simple cystectomy is the removal of all of the bladder.
- Radical cystectomy is the removal of the entire bladder, nearby lymph nodes (lymphadenectomy), part of the urethra, and nearby organs that may contain cancer cells.
- In men , the prostate, the seminal vesicles, and part of the vas deferens are also removed.
- In women , the cervix, the uterus, the ovaries, the fallopian tubes, and part of the vagina are also removed.
The surgery is done through a cut (incision) the doctor makes in your lower belly. Sometimes it can be done as laparoscopic surgery. Some people call this “Band-Aid surgery,” because it requires only small cuts. To do this type of surgery, a doctor puts a lighted tube, or scope, and other surgical tools through small cuts in your lower belly. The doctor is able to see your organs with the scope.
Recommended Related to Bladder Cancer
To prevent bladder cancer, your best bet is to steer clear of possible carcinogens, or cancer-causing substances. For example, don’t smoke cigarettes, a known risk factor. Eat smoked or cured meats only occasionally and prepare fresh rather than processed foods. Research also suggests that people with adequate vitamin B-6, beta-carotene, and selenium in their diets have a reduced risk of developing bladder cancer. If you work around carcinogenic chemicals, follow safety guidelines to avoid exposure…
If you have a simple cystectomy or radical cystectomy, your doctor will create a new way to pass urine from your body. There are several ways this can be done.
- An ileal conduit uses a piece of your small intestine to make a tube. The tube connects your ureters to an opening the doctor makes in your belly. Your ureters are the two tubes that normally carry urine from the kidneys to the bladder. After surgery, the urine passes from the ureters through the conduit and out the opening into a plastic bag that is attached to your skin.
- A continent reservoir uses a piece of your bowel to create a storage pouch that is attached inside your pelvis. There are two types. Both types let you control when you urinate. You may have a:
- Bladder substitution reservoir (neobladder). If your urethra was not removed as part of the surgery, your continent reservoir will attach to your ureters at one end and your urethra at the other. This allows you to pass urine much as you did before surgery.
- Continent diversion reservoir with stoma (urostomy). If all or part of your urethra was removed during your surgery, your continent reservoir will connect your ureters to an opening the doctor makes in your belly. You will pass a thin plastic tube called a catheter through the opening to release the urine.
Mainly because of my age, I plumped for the simpler urostomy, (i.e the ‘continent diversion reservoir’ explained above) mainly because the neobladder option suggested much post-op exercise and internal re-adjustment. I am sure that it is a very succesful operation, (Apparently recently undertaken by Lady Archer, wife of Geoffrey) but it is merely a matter of personal choice. My appointment was to be in the very cold month of January 2011 and sadly, at my first visit I was sent home due to the lack of space in the intensive care unit. Five weeks later and a similar scenario – due to a paucity of bed space – I was again turned away. Now when you are braced and set up to undergo such a traumatic attack on your body, such rejection did not lie too well with me, but after the threat of a third rejection my corner was apparently fought by Mr Cockelbergh and some 6 or 7 weeks after my initial arrival, like a turkey dressed for Christmas, I was prepared and primed for my fate.
Don’t ask me about the minutiae of the operation because I don’t remember a thing! Apparently the team was engaged for around 9 hours, but what I do remember is that wonderful moment when one returns to the real world from that false narcotic induced one. As I gently floated back down to my earth I remember feeling gingerly around my body to discover that I was trussed up like a Christmas turkey, only then to realise thay wires, tubes and plastic bottles of liquid were hanging as peripherals from divers parts of my lower torso, I was whipped away to the intensive-care unit to begin my recovery and eventually introduced to the little chap now protruding from my abdomen whom I fondly christened ‘Sid‘ and who would deputise for my former good friend.
© John McQuaid 2012
Read how it used to be done!