We don't have a strong family history of cancer - strokes & Alzheimer's feature more on one side, the other is long lived. However my brother has had bladder cancer and is now discharged from follow up. I wasn't concerned for myself as it isn't usually inherited. Most commonly smokers or those working with certain chemicals - neither of these applied to either of us.
Late Autumn 2010
My GP commissioned various blood tests for a general check up after my vague complaints of lacking vitality were not solved by HRT. All came back OK apart from marginally high cholesterol & fractionally low kidney function. So, a test for blood in my urine now & repeat blood tests in three months. Having duly delivered a sample, the surgery telephoned a week later to ask me for another sample as the result was 'unequivocal'. I found this slightly confusing - surely there is blood or there isn't? Perhaps the sample had deteriorated too fast? Anyway, repeated the process, to be told again 'unequivocal'. By this time it was Christmas so I thought I'd leave it until the repeat blood test were due - after all, I had no symptoms of urinary infection or kidney problems.
I booked for the blood tests to be done on Monday 28 March. By chance, on the preceding Saturday afternoon and again on the Sunday morning, I noticed blood in the toilet akin to that of slight menstrual flow. Even knowing that any post-menopausal bleeding should be taken seriously, there was still a temptation to do nothing - probably just a fragile vaginal wall - after all I'd been doing some energetic gardening.
I attended for the blood & urine tests & booked an appointment with my GP. On the Wednesday, further bleeding including two blood clots. Definitely to be taken seriously.
Thur 31 March
My GP was very reassuring - probably not sinister but needed urgent investigation in case. Oh yes and there was some blood in the urine - I suggested contaminated during collection perhaps. I still made no connection with my brother's cancer. A fast track referral was initiated leading to an appointment for a pelvic ultrasound scan & Gynaecology Oncology clinic the next week. In the meantime, would I do two more urine samples in case this was another problem. In retrospect, had I mentioned my brother's history, the referral pathway might have been different.
My internet research prepared me for further tests, a possible diagnosis and likely surgery, but I felt quite calm about it.
Wed 6 April
Duly drank my pint of water (no more, no less) an hour before the appointment time & set off to the hospital with a good book, expecting lots of waiting time. As my job is of a medical nature, I work in a hospital and am interested in medical matters, I am quite comfortable in this environment.
At 8.10 am called in. First the external scan. The radiographer commented that my bladder wasn't very full, then went rather quiet & I could tell she was measuring something. Then (after I'd emptied my bladder) the internal scan which was not uncomfortable & certainly more dignified than other gynae procedures! (It intrigues me that one is left to undress in private before putting one's intimate parts on show.) Eventually she pronounced ovaries & uterus fine, which was a relief. But, she went on, have you ever had any bladder problems? She talked about an 'irregularity'. At once, I thought, not what I had suspected, instead I have bladder cancer.
Off to the Gynae clinic - usual measurements of height, weight, blood pressure & urine tested. After an hour I saw the Gynae Consultant who was very kind. He was reassuring that mistaking the source of bleeding is common. I mentioned my brother's history; the consultant immediately telephoned Urology & managed to arrange for assessment the same day. Looks like there is a genetic factor (added to which, I always had poor fluid intake so any toxins would have been concentrated in the bladder).
A nurse took me to Endoscopy where I had another long wait and then I was prepared for cystoscopy. First of all I met the Oncology Nurse who talked me through the procedure, took swabs to check for MRSA & C Difficile & yet another urine sample. Then I was taken to a Ladies' waiting room with changing cubicles. I had to undress from the waist down and put on a gown. At least it had a decent overlap at the back!
A pleasant doctor checked that I knew why I was being examined. I mentioned the 'irregularity' & my brother's cancer. Up on the couch with a cloth laid across me and assuming the heels together, knees apart position. A quick squirt of anaesthetic gel & without further ado the flexible cystoscope was inserted in my urethra. Not entirely painless, but the discomfort eased once the bladder was entered. Now I could see on the screen a pink wall, criss crossed with blood vessels. Into view came an object a little like a soft coral - apparently only 2.5 cm but looking huge. The doctor pointed out 'that shouldn't be there'. I had been warned that water would be used to inflate the bladder, so not to worry if I felt wet, but I didn't notice this happening at all. Within moments the examination was over. The doctor straightforwardly told me it was early cancer which would need removing as day surgery and that a CT scan would be a good idea. I calmly accepted the confirmation of my suspicions. I asked how long I would need to be off work after the operation & was told I should take it easy for a few days.
Having dressed & been to the toilet as instructed (some stinging on passing urine) I went back to the Oncology Nurse who took me through the consent form, pointing out all the possible risks, gave me some leaflets about early bladder cancer and explained the system for grading cancer cells. I asked about having an epidural instead of a general anaesthetic but I got the feeling she was trying to put me off this. The Anaethetist will discuss it with me. Everyone's calm, confident approach made me feel almost relieved - at least I had a diagnosis & treatment initiated. I knew that there would be years of follow ups as recurrences are common.
Yet more waiting, this time in the Pre-Assessment Clinic. Managed to get a sandwich. More measurements, questions and form filling by a friendly nurse who was desperate for her lunch. Unfortunately she spoke fast, with a heavy accent & I had to keep asking her to repeat the questions. At least most of the necessary tests had already been done. Finally at 2 pm off home to break the news to the family. All I'd told my husband was that I was having a routine screening test.
I decided to keep it very light - after all my brother had been through it all and survived, so why shouldn't I? The worst moment was telling my mother, but I managed to catch her in a buoyant mood.
Thurs 7 April
Still some slight discomfort passing urine, but this improved during the day. The hospital telephoned with a date for day surgery - Thurs 28 April. Three weeks to go. It's not something I lose sleep over, but it stays at the back of my mind. Rather like not forgetting that I wear contact lenses. I'm the same person but I have acquired a new characteristic. I feel well, yet I am not. The weather is lovely and I carry on as normal.
My mother is very anxious, but I guess these matters are often harder for close relatives than the patient themselves. My brother is sympathetic & advises not to rush things after surgery. He usually had a week or two off work, but he did react badly coming out of the anaesthetic.
I only tell close friends & those who need to know because I have to cancel various plans & arrange time off work. So much easier when people passing say 'Hi, how are you' to answer 'fine'. The concerned look, the explanation - too much effort. Those that do I tell, I mention my brother & make out that it's almost a trivial matter - simple removal of a tumour. No stitches, just the general anaesthetic to get over.
Research reveals that superficial bladder cancer has a high 5 year survival rate - 80-90%. I'm surprised to see how common it is - number 4 for men, number 11 for women. But the more I read, the more I wonder if I'm not taking it seriously enough - potentially it could mean major surgery. Supposing it isn't so superficial, or the cells are aggressive? On the other hand perhaps the reason I haven't heard much about bladder cancer is because people survive so well.
The reports from the hospital mention 'macroscopic haematurea' - visible blood in the urine. How did I miss that? I certainly didn't think it was pink, although it was perhaps cloudier than it should be. Blame coloured toilet suites & pink toilet paper... I watch a video of the procedure on the hospital website. It's called Transurethral Bladder Resection (TURBT). Basically it's telescopic removal of the tumour with heat diathermy. The op takes about 20-30 mins. Immediately afterwards, mitomycin C is put in the bladder - intravesical chemotherapy to help deter tumour recurrence. I also look up anaesthetics and decide probably the GA will be the better choice for faster recovery of bladder & leg function. Advice about recovery after TURBT varies - many hospitals quote a few days as an in patient & some advocate up to 6 weeks before driving/going back to work! (This would have been after cystectomy as opposed to cystoscopy.)
I check with my car insurers about driving post-op. They tell me that discrimination laws prevent them asking me anything about my condition, but provided I follow the doctor's advice, I will be covered.
Mon 18 April
I'm booked for an abdominal CT scan. I settle in for the hour's wait while I have to sip a drink which will help show up the digestive system. It normally tastes of aniseed, which I loathe, but I accept lemon flavour instead. I am amused to see the concentration of lemon squash used to achieve this.
A nurse calls me through to the scanner room. The machine stands over a couch in the middle of the room, facing a window to the control room next door. She leaves the room while I remove my underwired bra - I had expected to undress, but this wasn't required. Then she explains that some contrast dye will be injected to highlight my kidneys. A needle is inserted and taped to the crook of my elbow, then I'm hooked up to a machine that delivers half a dose. Fortunately the nurse had warned me that I would get a metallic taste at the back of my throat (iodine) and briefly feel as though I'd wet myself. Very strange. Ten minutes for this to percolate through, then on to the couch. Slightly uncomfortable having to put my hands above my head (I have awkward shoulders) but the path through the scanner is quite narrow and I need to be hooked up ready for the second part of the injection. It's all quite quick, instructions over the intercom to breath in, hold it, breath normally. I pass under the scanner, watching the countdown of lights. Repeat and that's it. The results will be through by surgery day.
As the date approaches, I tell more people to warn them of my temporary absence. Some I just say 'an operation' but I realise people take this as 'something being put right'. In my case the procedure may well need repeating. I explain when I feel it is necessary or appropriate. It's not that I want to keep it private but I want to keep it casual & low key. A few know someone else who's got it and who is keeping well which is reassuring. It still doesn't feel real.
I visit some cancer websites. The forums seem full of people with advanced bladder cancer which is depressing. Later I realise it's because those who are doing well don't have much to say. It looks as though the next step, if the cells are aggressive or the tumour deeper into the bladder wall, is a 6 week course of chemotherapy via catheter during a day visit. Because it can be applied directly and not via the blood stream, there shouldn't be the usual hair loss, sickness etc associated with chemo. Only if things are much worse might I need bladder removal. I imagine what it might be like, having a bag.
Wed 27 April
At work as usual. In the evening I pack a bag - I was told to prepare for an overnight stay just in case I'm kept in, but I'm not sure what I might need. Usual toiletries, nightie, slippers and a change of underwear will do, plus a book. I'm nil by mouth after midnight but as I have an early start next morning, I have a mug of cocoa & go to bed at 10 pm. I must be feeling pretty relaxed as I have no trouble sleeping.
Thurs 28 April
Up early for a shower and last minute unwanted hair removal - I want to look my best! Off to the hospital for 7 am. The short stay parking bays have been re-allocated to maternity so I bid hubby farewell in the car & go in alone.
The waiting area is quite busy with patients & relatives. I'm one of the last to be called by my named nurse. Another check of blood pressure & temperature, verify my signature on the consent form and back to the waiting room. A little later I see the Anaethetist, who doesn't offer a choice & I don't ask. Among other things he checks for false teeth (none), crowns (two) or any metal implants. Finally I see a surgeon who tells me (as I know) that I'll have a catheter for an hour after the op, until about midday, and that I'll be followed up for 10 years with the first check in 3 months. I had expected an early appointment to discuss the histology results, but they will write to me. It sounds as if they are pretty sure it won't require any other immediate treatment. The CT scan was clear, apart from the known tumour. That's a relief. I ask about dos & don'ts post-op and when I can drive again - not for 24 hours, then when I feel up to it.
It's now about 9 am and I'm taken to a 6 cubicle ward for an ECG. The 4 beds are all taken, so I'm allocated a trolley. The nurse gives me a hospital gown and compression socks and leaves me while I change. There don't seem to be any ties other than at the neck - I should have looked before putting it on. It takes longer to put all the stickers on me & connect me to the machine than it does to take the readings. The nurse has to untie the gown to do this, but as she also gave me a dressing gown I feel adequately covered & sit in the chair for more waiting. The anticipated midday removal of the catheter means I'm late on the list.
One by one the other ladies depart on foot to the operating theatre, followed by their bed which is wheeled off by nurses. Apologies are given to the young lady next to me for a delay because they've decided to put a teenager earlier on the list. I wonder what sort of op each one is having. One elderly patient is obviously bound elsewhere as a new bed arrives which is to be mine.
Gradually the other beds return with an occupant. The lady opposite me come back with her nose bandaged, the one beside me obviously has a catheter. I can hear her muttering to herself.
At about 10.30 am it's finally my turn and the assistant anaethetist escorts me to the theatre. There are three people organising putting me to sleep, plus a nurse. They make small talk - did I have far to come, what would I be doing if I wasn't here. I make suitable responses but feel I'm probably talking nonsense. It has now been over 12 hours since I had any food or drink so I'm probably a bit light headed. I'm asked to say in my own words what I having done & proudly say 'a trans urethral bladder resection' which seems to suffice. The 'sharp scratch' on the back of my hand is rather painful and has to be re-done. The anaethetist presses very had on my hand to prevent bruising. Then I drift off into unconsciousness.
I'm convinced I was dreaming as I come round in the recovery ward. There is a canula in my right arm through which I'm given some painkiller though I don't feel too bad - just feel a bit sore. I hear the surgeon telling me it went well & that he'll see me later. Soon I'm wheeled back to my ward. It's 11.30 am.
The catheter is not as bad as I expected. I'm happy to rest and watch people going to and fro in the adjacent corridor. It hardly seems any time before a nurse comes to remove the catheter - just mild soreness as it comes out. A nurse brings me water and gives me the bed control. I manage to get into a comfortable position and reach my bag. I even feel like reading and enjoy the toast that my named nurse makes for me. The other patients appear to be recovering well.
I realise that I haven't asked the questions I was saving for the post-op appointment which isn't now scheduled - will the surgeon come round? Yes he usually does, when the list is finished. Anyway, I have phone numbers to contact someone if I want.
The hospital dressing gown has disappeared but I have a long cardigan as a substitute. Accompanied by my nurse, who ties up the gown for me, I attempt a visit to the toilet but there's only a sore dribble. Back to bed and carry on drinking water. Two ladies leave to go home. I know I have to pee twice before I can be discharged.
My nurse comes round at intervals to do obs. All going OK. About 4 pm I decide I can try the toilet again. I'm not allowed to lock the door but my nurse stands guard outside. Success! It's sore, but a relief. Then at the end I get such an awful cramping pain that I get sweaty and nauseous. I manage to pull the call cord and the nurse comes in. She produces a dish in time for me to throw up. She's very sympathetic & brings a wheelchair to take me back to bed. I'm shivering and shaking. Then I have some anti-nausea medicine injected and start to feel a little better. I'm given paracetemol & codeine tablets.
My memory of the sequence of events after this is hazy. Over the next few hours I manage another couple of trips to the toilet on foot and the pain isn't quite so bad. A small amount of blood, but this is to be expected. It's helpful that the washbasin is located so you can sit back on the loo to wash your hands. Not such a good design feature that the paper towels dangle in the sink and get wet! At some point I have more paracetemol too.
A nurse tries to persuade me to eat and I have a yogurt. She says they can discharge me quite late in the evening but I ask to stay in. I start to feel worse and have more vomiting, more medicine. My kind nurse tells me I can stay overnight if I want. It gets later & she finishes her shift. She's done a 12 hour shift and has worked very hard including all sorts of unpleasant tasks. By now I'm the only lady left, but they tell me there are three men staying too.
During the night I'm very wobbly and visit the toilet by wheelchair on one occasion. I have to go about every two hours but manage to sleep in between. Every time I still get the cramping afterwards but it settles after 5-10 mins. A bit nauseous but thankfully no more vomiting. The nurse usually does my obs when I'm awake. I recall doing some Tai Chi movements (in bed!) for a distraction and relaxation, but it's hard to remember them properly. I'm given an injection in my stomach to prevent blood clots. Sometime I have a drink of orange juice. When I'm steadier a nurse tells me I can now go to the toilet unattended.
Fri 29 April
About 7 am I manage half a piece of toast and half a cup of coffee. I ask about having the canula removed but they want to wait until nearer discharge time. Hubby is coming about 9 am to fetch me. It's just as well because I suddenly get nausea again and vomit so have another injection. Later I get dressed slowly which makes me feel a little more normal. They tell me the TV is on in the day room - do i want to watch the Royal Wedding? Not especially. A nurse brings my discharge papers which have obviously been printed yesterday as they show yesterday's date & patient status 'well'. Eventually the canula is removed.
Because there are no patients arriving today, there's no-one on reception & hubby has difficulties getting in. He goes to another department where a light is on & they telephone through. I'm glad to see him. I take a cardboard bowl with me in case I feel sick on the way home. No-one is around except an assistant - we wave goodbye and head out to the fresh air. I'm wobbly but make it to the car OK and it's good to get home. There are flowers and cards to greet me.
At last I feel hungry and have a mug of chicken Oxo. Wonderful! I sit and rest, read a bit, watch a film & visit the toilet every 30-60 mins. I attempt to drink the 2-3 litres of water as advised. Pain much less and only a trace of blood. A little more food late goes down well. An early night and plenty of sleep with only a few interruptions for the toilet.
The next day the hospital calls to ask how I am. My son answers and I wonder if it was my lovely kind nurse. I wish I'd the post-op information beforehand and I'd have known better what to expect. It says that although there's no incision or stitches, the body responds as though there are. The bladder can take up to 3 weeks to heal. I'm slightly alarmed to have a leaflet about having a course of intravesical chemotherapy (direct into the bladder), but perhaps it's meant to cover the single dose treatment too.
Over the next few days I gradually gain more strength, potter in the garden in the sun and my appetite improves. Provided I keep drinking about 2 litres of water a day It's OK passing urine. Still some pain & nausea afterwards, especially at night, but not bad enough to need pain killers. My head is swimmy and it's difficult to concentrate. I also have a nasty metallic taste in my mouth and the back of my hand is tender.
Hubby does some housework and the cooking. I get annoyed when he asks for instruction but says that's different from what he's looked up in the book. The results are fairly palatable at least! I also feel resentful when he says he feels tired too at the end of the day when he hasn't done half as much as I usually would. I'm the patient after all!
After a few days I can manage short spells at the computer but not anything involving looking from side to side. I read and watch lots of TV and start doing cooking again. Going to the toilet every 40 mins is getting tedious. A few people call at the door or telephone but I can only manage a brief conversation.
Thur 5 May
With my son, I manage the short walk to the polling station and back. Activities have to be planned round my frequent trips to the loo, but this is gradually improves a little over the next few days. Another 1-2 weeks before the results will be available and the hospital has a multi-disciplinary meeting to decide what happens next.
Sat 7 May
I manage a solo trip to the local shop, but choosing a card makes me feel a bit queasy. Back home I write a letter of thanks to the Chief Exec. of the hospital and a card to my kind DSU nurse. I know I appreciate positive feedback from my patients. Frequency, urgency & discomfort of urination improving. Feeling a bit low - that I've tried to lead a reasonably healthy lifestyle but it's me that's got ill and not others less healthy.
Tues 10 May
The first day I wake up feeling more normal. In the evening I have my first proper outing, to a committee meeting that I chair. I feel a little wobbly & swimmy but I cope and the meeting only lasts an hour. I'm very glad to get home again.
Thur 12 May
Two weeks since surgery and I'm feeling pretty much OK, concentration & energy returned although opting for early nights. Still more frequent need to visit the toilet & some bladder discomfort but nothing to complain about. Now the wait for the hospital report.
Thur 19 May
The hospital telephones with an appointment date. Part of me is anxious that this means bad news, but they did say initially that I'd have a visit. I start preparing the questions I want to ask, about risk to my children, any advice about diet & so on. No longer having to get up at night for the toilet, but more frequent daytime than usual.
Thur 26 May
I go alone to my appt, not really expecting other than routine follow ups to be scheduled. Not too long to wait before I'm shown into a small consulting room to await the consultant - the specialist I was hoping to be seeing. He shakes my hand but doesn't smile. Having asked me to relate what's happened so far & established that I understand I have cancer, he starts off by saying that it was an unusual one then goes on to elaborate that it was a small tumour but aggressive and they need to check if it's gone deeper. If it hasn't, they can offer BCG treatment (immunotherapy with BCG vaccine instilled into the bladder). He says that would be a reasonable option. If the tumour was already deeper than thought, bladder removal (radical cystectomy) will be required. Even if I have BCG, any recurrence means a cystectomy is advised because progression (deeper into the bladder wall) & spread (via lymph nodes) is common. I ask some questions to clarify what he's saying about recurrence & progression - could it already have spread? Unlikely.
He leaves me with an information sheet about having a biopsy while he fills in a consent form. I feel a bit sick with shock. This is now potentially a life threatening condition. I have a fleeting thought that I've had a good life, at least an early death would spare me decline in old age. I don't fear death itself, but the manner of decline. But I feel too young to die just yet.
When he returns, I check I've understood the options. I feel he's been a bit aloof and not sympathetic - as he leaves I say it wasn't the news I hoped for, but am confident I'm in good hands. I'm given my notes in a sealed envelope to take to Pre-Assessment. I just want to go home. Thankfully it's a very pleasant senior nurse who calls me in & asks if it's OK for a medical student to sit in. I feel a bit more relaxed while we're doing all the form filling. The student has a go at measuring my blood pressure. Surprisingly it's still reasonably normal.
I go home & tell my husband I'm to have a biopsy to see if BCG treatment is possible - otherwise I may need to have my bladder removed. It's obviously a shock for him too. I'm not very hungry but manage to cook & eat some supper. I go to choir practice as usual, feeling it's best to do normal things. Despite feeling very tired, I don't sleep well, going over what was said.
Thurs 2 June
A week of reduced appetite & poor sleep, thinking about my options. I've been visiting & revisiting websites to try and assess the advantages & disadvantages & possible outcomes of the options in the event that I have any choice. In case it's already muscle invasive and I need chemo, I'm even looking at wigs & turbans. As I haven't heard from the hospital I give them a call and am told Tues 14 June for the biopsy. I feel better now I have the next chapter under way. I've told other family & friends that the results weren't as good as expected, further treatment will be needed, to be determined by the next results. I start to think of surgery as treatment, just a different sort. We cancel the holiday we'd booked on the basis that I will be having one or other treatment in the Summer.
Thurs 9 June
If I have a choice, both alternatives are unpleasant, time consuming & with lifetime follow up.
BCG is an initial 6 week course (once a week) and a 3 year maintenance dose programme, with possibly unpleasant side effects (flu like symptoms, bladder irritation, frequent & painful urination), probably time off work and interference with my life - repeated cystoscopies (I assume with GA), the stress of waiting for results and no guarantee of success. I may still need surgery even years later when I might not be so fit, might interrupt family plans, might have difficulty getting back to work. If it isn't effective, I risk getting an invasive tumour and possible metastases which would mean chemotherapy, bladder removal and a worse outlook - possibly death within 5 years.
Surgery is pretty radical - removal of bladder, ovaries, uterus, some adjacent tissue & lymph nodes and formation of a urinary diversion. Part of the ileum is used to form either a 'neobladder' connected to remaining urethra or a small pouch connected to a stoma (for an external collection bag). There is a third method, an ileal pouch with a valve opening to the abdomen, that is self catheterised. In the UK this is the Mitrofanoff - it sounds a good compromise, as the neobladder appears to have less assurance of continence, especially for females, or they become hypercontinent and have to self catheterise. Recovery is lengthy but I work out no more time off work than BCG overall.
Having veered in one direction then another, I decide that I will choose surgery as having the better prognosis and being able to get on with my life. I'm not willing to risk putting myself in a worse position. More pain in the short term for more gain in the long term - I hope. Having made this decision I feel somewhat liberated, a weight lifted from my mind, although it's still all rather surreal. My tumour has gone but I still have cancer - I feel it could recur at any moment. I'm not angry or upset - just want decisions made and to get moving on treatment. I don't fret about anything I may have done, or not done, to cause this. It has been brewing for maybe 40 years, I tick all the boxes for low risk to health - just bad genes & not flushing toxins through enough. Other people have far worse problems to deal with.
Thurs 14 June
Usual early morning start & process of seeing nurse, surgeon (yet another one) & anaethetist. The latter suggests giving me some anti-emetic sooner rather than later. I'm told the list is very long but no-one can say where I am on it. It's rather chilly on the ward & 3 other patients talking on mobiles is a bit irritating. About 9.30 am an anaethetist collects me. We have a pleasant chat about training & working in hospital, long service awards along the way. They get me ready while we wait for the surgeon to appear, then off to sleep. Back in recovery about an hour later, feeling very shivery - the nurse advises deep breaths to shed the anaesthetic. I'm offered an extra blanket back on the ward where it's still cold & I feel a little queasy after the trolley ride. I am prone to travel sickness...
A little later I manage some ginger biscuits & orange juice. Although I'm only mildly sore I ask for pain relief before visiting the toilet. A successful trip at half past twelve so I'm allowed to ring hubby to take me home.
Safely back home by 2 pm and thankfully no ensuing nausea although I have a headache. Very tired and washed out so I rest & sleep as advised.
Mon 27 June
Recovery has been much faster this time, none of the bladder cramps or urinary frequency. This makes me think that I reacted badly to the mitomycin which leads me to think BCG side effects might be bad too. Back to driving after a week, although still tiring easily. Also, the same emotional dip about day 10 as I had before. Discomfort standing for a while.
A suggested by the DSU nurse, I ring to find out progress. I'm told I'm to be discussed (at the multidisciplinary team meeting) later in the afternoon & will have an appointment in a week or so. They won't leave a message with hubby because of patient confidentiality.
Tues 28 June
They telephone & leave a message! Appointment is 9.00 am on Thursday. Is the haste because of a bad result, or just a convenient gap on the list? Still having difficulty sleeping - I keep my ipod handy as listening to music or podcasts helps keep me from tossing and turning and stops my thoughts going round in circles.
Thurs 30 June
I'm expecting to see the consultant again, but a pleasant young senior registrar comes in. It's good news, no sign of muscle invasion. That means 'the pressure is off' & I have to choose treatment - BCG or surgery. I ask a few questions, but he doesn't have any more information than I've already gleaned from the internet.
It seems that BCG has about 30% chance of no recurrence, 30% recurrence same or better & 30% chance progression (with risk of metastases). Overall about 50% patients end up with surgery anyway. He doesn't try to persuade me either way. I feel a little tearful at saying I think I'd go for surgery - it's such a big decision & neither option very pleasant. Suddenly it feels more real. He sends me away with leaflets about BCG, surgery for the neobladder & stoma, to think about it until 12 July. I ask on reception about waiting time for surgery and am told about 2 weeks. So I am thinking August, which will be good as I won't miss much of my usual activities then.
I talk it through with hubby who expresses support for whatever I choose but doesn't seem to want to hear details. Surgery it is. I feel I must embrace this positively, prepare for it. Our first grandchild is due in July and I want to be fit to go and visit (they live abroad) - we'd already decided to defer until baby is at least 6 months old and more interactive.
Sat 2 July
We visit my Mum to explain the situation & my decision, trying to make it sound positive and playing down the risks. She has a fleeting look of panic when I mention bladder removal, but quickly regains composure.
I'm inclined to go for the stoma for simplicity, only a week in hospital (if all goes well) & speedier recovery, so as not to worry the family. The neobladder means 3 weeks in hospital, learning to use the new system over a period of months, possible self catheterising or incontinence. An internet forum gives me an opportunity to find out more from others who have been through this. I'm now concentrating my searches on information about surgery, what it entails, recovery process.
Still bladder irritation, having to empty more often, including getting up at night. I feel I've joined a new club, those with serious illness.
Tue 12 July
Another early start for my clinic appointment. The board shows the clinic is running an hour late but I'm called in on time. A specialist nurse comes in with the consultant this time - not much space, so he perches on the examination couch. I state my choice as surgery & he starts by giving an optimistic 80% chance of cure with this. He says about 25% patients are found to have cancer cells in the bladder in post op pathology report. He spends about an hour explaining the procedure, possible complications & risks - it's serious surgery on a par with major heart surgery. However, the statistics don't differentiate between young, fit patients and old, frail ones. Serious as it sounds, I'm thinking I'm youngish & reasonably fit - surely I'll be OK.
I now have two choices - the simpler stoma & bag or more complex bladder substitute. For both, the stay in hospital is only a week if all goes well although with reconstruction there will be a return visit for a few days after a week at home. He makes the reconstruction sound a more attractive prospect than I'd thought - when I say I understood not so successful with females, he scoffs at the internet & says it depends on the surgeon. He anticipates with my age & fitness a good chance of continence and says I should be able to void 'more or less as normal' although I will have to get up every night to void. I think yes, I can do that. Surgery takes about 7 hours for the bladder substitute. They'll arrange for me to talk to two patients - one for each type of op.
We get on much better than when we first met - I manage to get a smile out of him. I ask about genital sensation & he says he's had no complaints!
I'm still undecided about which type of urinary diversion. To check if reconstruction is possible they need to do another biopsy of the bladder neck/urethra to ensure no cancer cells are lurking there. I'm worried about the time delay, but he says it won't make much difference - I'll have to come back to the clinic anyway to confirm my choice with op likely to be in the second half of August. I can cancel the biopsy if I decide on stoma. I have the usual consent form to sign & then go off with the nurse to another room. Consultant even pops back to wish me happy birthday for tomorrow.
I then spend about an hour with the nurse who tells me a little more about the consequences of the two options, shows me stoma bags and catheters and gives me a bag of leaflets & a pre-operative stoma pack. She mentions the Mitrofanoff as needing a long 'male' catheter. Rather large to be carrying these around all the time so I dismiss this option.
I'm oddly elated with all this information & goody bag to take home. Off to pre-assessment again - nearly lunchtime by now. The same nurse as the first time who praises my low blood pressure. I've lost 2.5 Kg since all this started. Back home to read all the leaflets. Nearly all the pictures are rather portly older men. Where are the middle aged slender females?
Thurs 14 July
I try out the pre-op pack. The stick on stoma is somewhat larger than I expected and I manage to slop water everywhere filling the practice bag, but get it stuck on OK. It feels very large, extending above the top of my jeans, below knicker leg and looks an obvious bulge. After a little while I empty out some water and it looks slightly better. Reasonably comfortable but I'm aware of the plastic rustling. There are several bags to try so I decide to swap for a different design. Still rather large but less of a bulge and more comfortable. I manage to spray water everywhere being careless while emptying a bit out. I try on different clothes to see what it looks like - some close fitting dresses show an obvious bulge to my eye, but jeans are OK. I leave the bag on and carry on with usual activities to give it a real test.
A lady with a stoma telephones and is very encouraging. I'm sure I could cope with this but I'm now inclining towards the bladder substitute. This is for me, for the rest of my life. I'm more vain than I thought. Spending a little more time & effort post op will be worthwhile in the long run.
Fri 15 July
I find the bag unexpectedly noisy - it rustles, especially at night. No problem sleeping with it though. Last two bags on trial - skin getting red from the bag changes & I give up after lunch. I think I'd want to empty frequently to avoid a large bulge. Depressed at reading the clinic report which has arrived (which reminds me of some of the risks and drawbacks and makes it seem more real and serious), as well as receiving admission letter & (unexpected) CT scan appointment. Wondering if I might ask if the Mitrofanoff pouch is available to me. The equivalent Indiana pouch in the US seems successful.
Sat 23 July
Make contact with a lady who has the bladder substitute. She's still pleased after 4 years, although says the first year was tough to gain continence. It sounds difficult & continence uncertain, especially at night. Everyone online seems happy with their choice & says that can lead a normal life but of course no-one has tried both options. No-one in the UK seems to have the Mitrofanoff for bladder cancer, although some have had it for other reasons. I feel it sounds a good choice and wonder why the surgeon didn't offer this. If there is a risk of having to catheterise anyway, surely better to catheterise where I can see. Also it sounds as if continence is easier to achieve.
Mon 25 July
I try to ring the specialist nurse for information. She's on holiday for a fortnight. I know the consultant is away around now too. I feel a bit abandoned & as if this extra biopsy is just filling in time. I'm keen to have this surgery to avoid a recurrence, which could pop up any time.
Tues 26 July
CT scan - procedure much as before except it's at lunchtime. The nurse is sympathetic about the drawn out timescale, says it's important to get all the information prior to such an important op. Because I have good veins, she asks if a trainee can insert the cannula. I'm quite happy about that & she does it well.
Afterwards on impulse I drop in to the cancer support centre. I burst into tears, then have a pleasant chat with two ladies. Feel brighter & go home.
Wed 27 July
Biopsy day. I'm taken straight to the ward today as I'm first on the list. So the registrar & anaethetist come to me. I have a little moan to the registrar about how long it's all taking, although I appreciate the thoroughness. I say I'm anxious about getting a recurrence before surgery but he says that's unlikely. If it was more urgent, I might not have had a choice of style of op. I find that reassuring to some extent and think again how massive a prophylactic measure this will be.
I'll end up the same as people with worse diagnosis - though hopefully I'll have better long term prospects as consolation.
Off to theatre about 8.30 am & back in recovery by 9.10 am. Drowsy for a bit then enjoy toast & juice. Registrar pops by to say all went well & I apologise for my earlier crankiness. Manage a wee by 11.00 am so home by midday. A bad night followed. (Next day our granddaughter is born - I'm glad to be able to talk to my son on the phone.) Familiar fatigue & woolly head for the next week or so. I am continuing my life as usual but every spare moment am thinking about the surgery options. I have some good friends to whom I can talk although I have discovered there are some who are uneasy at thinking about mortality. Many people say how brave I am - I don't feel that, it's just something I have to do so I might as well make the best of it. In an odd sort of way I quite enjoy the celebrity status.
Mon 8 Aug
I telephone the specialist nurse. She's able to tell me that I was discussed at the MDT meeting last Mon but doesn't know the outcome. The consultant (who has been on holiday) will look through the notes tomorrow & allocate clinic appointments. I ask about the Mitrofanoff & am told it's not usually a first choice because of a high risk of requiring re-doing. Still I think it would be my first choice, with reconstruction second. I've started concentrating on pelvic floor & abdominal exercises to prepare me for better recovery after the op. Also making lists of suitable post op foods, buying loose trousers and planning for my convalescence. I find some more useful information for post op on the internet - my hosp info sheets are rather more concentrated on the surgery itself.
Thurs 11 Aug
Weary & tearful after not sleeping well & being in limbo for nearly 4 months. Rang the appointments sec. who tells me clinic appointments not yet set - boss too busy catching up on surgery after his 3 week hol. Only one clinic day next week, taken by the registrar. I'll been seen within the next 3 weeks! The waiting time for surgery then a week or two. Looks like Sep for the op then. A new consultant is starting in September who will be sharing the surgery load. I'm alarmed at the idea that I might be passed on to someone different. Plan to tell the consultant politely how this might have been less stressful if I'd been given more accurate guidance about the timescale.
Mon 15 Aug
Planning to ring the consultant's secretary but get a call with an appointment late morning on Thurs. I'm thinking then the op could still be week of 29 Aug.
Thurs 18 Aug
Long wait - board says running 45 min late but it's an hour and a half past my time when a nurse apologies, says I'm not forgotten & shortly after calls me in. I understand, it's good that everyone is given the time they need, which can't be predicted. A young man comes in, introduces himself as a new Fellow and says consultant will be along presently. He asks about the patient experience so I have a golden opportunity to explain how it feels - excellent attention when I'm there but frustrating waiting for dates etc & being given conflicting information re time scales.
We are joined by the registrar who tells me the CT & biopsy results are clear & checks I have all the information I need about the surgery options. I only want to ask about the Mitrofanoff & really need answers from the consultant. They sympathise about the difficulty of so much choice (although that also means having the surgery at this early stage gives better prospects for me). The consultant pops in apologetic that he has been called to theatre, but stays long enough to advise against Mitrofanoff (the first actual recommendation I've had!) & if I don't want the bag then to go for the reconstruction. So I plump for that & ask for a date. Registrar dispatched but is unable to do more than pencil in week of 12 Sep, date to be confirmed next week. I'm a bit upset at the further delay. He says they aim for op within 30 days of 'final decision point' & explains that patient numbers are more erratic than I thought so they have to find extra theatre slots. I do realise that as the op takes all day, one or two extra patients completely use up the available theatre slots. I say I'm grateful for the thinking time but I've had more than enough!
Off to pre-assessment again. Extra blood tests this time & issued with some special nutritional drinks to have the day before surgery.
Wed 24 Aug
No call from the hospital so I ring them. I'm not listed yet - awaiting consultant to allocate patients to lists. First available slot 13 Sep (the week expected) but extras may be put in, or cancellations occur. It's not that I especially want it sooner, I just want to be given a date. They say the registrar shouldn't have suggested when I'd be informed. I say how stressful it is & they say they understand, but don't sound very sympathetic. I know I'm not the only patient, probably not the most urgent, but I've not been sleeping well & I'm fed up. Ah well, I'm resigning myself for another wait and still doing lots of pelvic floor & abdominal exercises. At least I've now effectively had a 3 month check up with no recurrence. Does that mean I'm low risk, that BCG more likely to be effective? I feel a bit aggrieved that there's no way of diagnosing personal likelihood of success with BCG but I'm still determined to go ahead with surgery. I review the statistics online yet again.
A news report of Mary Archer having had the same operation reassures my mother (despite saying what major surgery this is) & helps inform some of my acquaintances.
Fri 26 Aug
I'm offered Fri 2 Sep. Countdown starts now! I start canceling activities, arranging hand over of responsibilities etc.
Tues 30 Aug
About 4 pm, I'm at work & get a message to ring the hospital. Would I be willing to come a day early? They want to rearrange the schedule for someone who is still uncertain about surgery. After a few minutes dithering, I say yes. So, take the next day off work, clear my locker (just in case) & move everything forward 24 hours.
Wed 31 Aug
Final preparations. I look at my abdomen, thinking that I will never see it look the same again, wondering how it will be post op - flabby like after childbirth or swollen and misshapen? The pre-op drinks are rather sweet, but lemony and not too bad. I manage to sleep fairly well, I'm feeling quite calm about it all - even mildly excited at this big adventure I'm about to undertake.
Thurs 1 Sep
We arrive at the hospital just before 6.30 am & have to wait for the DSU to open up. I'm slightly anxious because my admission letter now has the wrong date, but they have my notes ready. As other people arrive, I think how odd it is to have minor surgery alongside such major surgery. About 7.15 am I'm called in. This seems a good place to start a new entry: A87708351 Radical Cystectomy & Bladder Reconstruction - my story. This relates detail of the operation & my recovery process.
I am under anaesthetic from about 8.45 am until 7 pm. Later that evening the consultant pops in to see me. He says that there was no sign of spread which is good news. I've almost forgotten why I was having the op, was so focussed on having new plumbing.
As scheduled, I spend 7 nights in hospital. I am relieved to find that I still feel like me, despite the radical surgery. No mourning my lost bits.
Wed 14 Sep
The consultant tells me that the pathology report is all clear (subject to ratification by the MDT). I am pleased, but aware this is no guarantee of a cure. (The next day I return to hospital to have the catheters removed and start using my new plumbing - Living with bladder reconstruction A87732525)
Thurs 24 Nov
I have a follow up clinic appt booked for 4.15pm but at 5 pm a nurse comes to whisk me off for blood tests before they shut for the day. She tells me both consultants are there which is good news. I have met the new consultant - a lady - quite pleasant, but I'd rather see my surgeon. It is he who comes in to see me. He's pleased with my recovery and no sign of hernia (& no stoma bag!), so tells me I can start doing more. I tell him I'm happy that I made the right choice for me. He confirms the clear pathology report and gives me 90-95% chance of being cured, which is the best news possible. (When I get home & tell the family, they seem strangely unmoved by this news.)
I'm seen again in January for issues with my bladder substitute. I will now be on the low risk follow up pathway - appointments every 3 months for two years, every 6 months for two years, then annually for life. Blood tests and chest X ray each visit plus annual renogram & ultrasound.
Mon 23 April
I'm feeling fit and well after a 3 week holiday (visiting our granddaughter), having got over jet lag & a cold. Still probably not quite 100% strength back yet. Clinic is happy to send me off with no appts for 10 weeks subject to clear chest X-ray & normal bloods. Effectively I have now been clear for a year. Hurrah.
As I approach one year post op, all is well and I am feeling very fit - I had been wanting to do a dance class before all this started & am now doing salsa aerobics as well as all my usual activities. I am accustomed to my new plumbing, its function is still improving and I can do all I want. Having gone to such lengths to be well, I am conscious of trying to keep fit & healthy.
Occasionally I can't help wondering if I would have been OK with BCG. I have found some tables for probability or recurrence & progression indicating that a single small tumour is in my favour, but being female increases my risk; I am classified as intermediate risk. The timescale for recurrence & progression is more drawn out than I had originally thought. Interestingly, the recommendation for my category is BCG treatment as having a good chance of halting or delaying recurrence & progression. Still does not eliminate the risk though. Given the possible consequences of an invasive tumour & poor outlook, any risk was too much for me, apart from the stress & possible side effects of BCG and repeated cystoscopies. I count myself lucky that I was diagnosed early & was able to choose my treatment. Cancer is a nasty, insidious disease that can be very advanced before detection. I don't regret my decision at all as I now have peace of mind though I'm always relieved when I hear that my test results are normal.
People have stopped asking me 'How are you' in those hushed tones reserved for the sick & bereaved. If I'm honest, I have quite relished being a bit of local celebrity. It still hits me occasionally what a big event all this has been & how serious bladder cancer can be; I replay episodes in my head. I have to live with the change to my urinary function and sometimes wonder how I will cope with it in the years to come, but really I cope with it fine. It could have all been a lot worse & I still consider there are far more awful things can happen in one's life.
Still doing well.
Now officially 5 years clear & expecting many more!