Radical cystectomy & bladder reconstruction - my story
Created | Updated Feb 24, 2017
This is a follow on from A84415403 Bladder cancer - my story.
For new readers starting here, a brief summary.
On 6 April 2011 I was diagnosed with superficial bladder cancer. The tumour was removed 3 weeks later as day surgery and I hoped I would only need regular checks to have any recurrences similarly removed. Bladder cancer has the highest recurrence rate of any cancer and is the most expensive to treat because it usually requires lifetime follow up.
Unfortunately the pathology report revealed mine to be unusual - a superficial single small (2.5 cm) tumour but high grade (TaG3), meaning a risk of any recurrence becoming muscle invasive and spreading elsewhere. A biopsy confirmed that it was still superficial so my choices were immunotherapy (BCG vaccine into the bladder) or radical cystectomy (surgery to remove the bladder).
With immunotherapy there is a 50% or more chance of needing surgery at a later date - possibly with an invasive recurrence which means chemotherapy and a worse outlook. I opted for immediate surgery as having the best prospects. Another biopsy to determine the possible choice of urinary diversion options - bladder reconstruction was feasible for me.
Radical cystectomy & bladder reconstruction - the story starts here.
In the case of a cystectomy for cancer, the surgery involves removal of bladder and pelvic lymph nodes & formation of a urinary diversion. Adjacent structures are also removed in case cancer cells have infiltrated them. In women the uterus, ovaries & part of vagina are also removed, in men the prostate goes. The standard urinary diversion is a small part of the intestine linking ureters from kidney to an opening in the abdomen (a stoma) over which the patient wears a urostomy bag. For some patients it is possible to take a longer (approx 60 cm) section of intestine, reshape it into a pouch connecting ureters and urethra. This is an orthotopic ileal bladder substitute, sometimes called a neobladder. Learning to use this new equipment effectively can take many months but should allow the patient to void more or less normally.
Wed 31 Aug 2011
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 I have been given 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 Day Surgery Unit to open up. At 7.15 am I am admitted. It seems very odd to be waiting in the same area & using the same operating theatres for such a big operation as for the minor day cases. There is a lot more preparation this time & many people in & out of my cubicle. First of all, tagging on wrist & I bid farewell to hubby before I'm given a 'small enema' - syringed up my back passage. Not too unpleasant & I'm allowed to go to the toilet soon after. I change into a gown & the nurse puts thigh high surgical stockings on me. The registrar confirms the consent form, the nurses check various admin details. The anaethetist explains how they will administer an epidural for post op pain relief, summarises benefits & risks, tells me about where I will be & what happens when I wake up. I'm pleased to see my consultant who asks if I have any questions. I say that I feel I should have, but can't think of any - he replies that's good, I should feel well informed. He primes me to give a brief description of the op when asked in theatre. The specialist nurse comes to mark me up for a stoma. This is always done just in case for some reason the intended procedure is not possible. I have to stand, sit, bend over, indicate usual trouser & underwear position while the nurse tries different positions for her black dot sticker. Eventually she draws the spot on my skin & tells me I will have quite a few more marks later - the consultant draws line across the incision to be able line up the edges well when closing up.
About 8.30 am the anaethetist walks me off to theatre. All very familiar as this is the fourth time in a six months. However this time I leave my bag (tagged) in the cubicle, but carry with me a plastic box for my watch & specs and I'm wearing my own sandals. I note that the operating table has substantial padding on it, so I should be comfortable! I have to sit on it sideways with my feet on a stool while the anaethetist sets up the epidural. Local anaesthetic first, then pushing & prodding. It seems to take a while but finally he is satisfied and sticky tapes the thin plastic catheter up my back & over my shoulder. While I'm still sitting up, the consultant asks me for my description of the op - 'removal of bladder & few other bits and new bladder made from a section of intestine' goes down OK. I'm still feeling quite calm about it all.
I lie down & they start the process of inserting lines in veins. First one in the back of my hand fails (not for the first time) so they have to use the back of my wrist. For the first time I feel a little fazed as I see the surgeons in the adjacent scrub room. Other arm now cannulated, oxygen mask on & I'm off to sleep.
As I learn later, about 2 pm the surgeons take a break. The consultant phones my husband to tell him all is going well - the necessary bits removed and reconstruction to be done next. The surgery is completed by 6 pm - a total of about 7 hours work. Another call to my husband to say I will soon be brought round & taken to recovery.
About 7 pm I wake in the DSU recovery ward. The anaethetist warns me that I may have a sore throat as they had some difficulty intubating me. He's right - but it eased after about 12 hours. Otherwise there is no pain although I feel a bit uncomfortable with tubes & lines attached to many parts. Around 8 pm they wheel me to the hospital's main recovery ward where I am allocated to a nurse who stays by me. I am sufficiently awake to review my situation & mumble to the nurse to move bedding & tubes off my neck as they make me nauseous. There are two lines in my left arm - one venous, the other arterial - one in my right arm attached to a drip and another line in my neck. No nasogastric tube thankfully, but I have oxygen tubes to my nose. There are two catheters to my left, urethral & suprapubic. On the right of my abdomen two small tubes (stents), and a soft drain. As well as all this, a cuff on my upper arm & blood oxygen clip on a finger completes the set. A hospital gown is just laid on top. The consultant pops in in & comments how amazed he is at being able to converse so soon after all that has been done. He says there was no sign of spread - I had almost forgotten why I was having the op. Later I hear a telephone which turns out to be husband calling - they hold it to my head so we can have a few words. The night passes with a change of staff and I doze, woken by the bed rippling, the blood pressure cuff tightening or having to change position. The nurse complains that I slip down the bed - not deliberately, I insist - which makes me chesty. It's quite a job to haul me back up on the sheet. A few other patients come & go, with a variety of conditions - it's certainly quite busy by mid morning.
Fri 2 Sep
My husband telephones again early in the day - this time I can hold the phone & we have a more coherent conversation. Two nurses clean me up with wipes and the registrar comes by to inspect the wound. It looks disappointingly quite a prominent ridge, stapled from just above navel down as far as I can see - now minus pubic hair too. My abdomen looks quite lumpy and not at all empty or floppy. All numb from the epidural. They check this by running an ice cube down my front from shoulder to knee, each side. The sensation goes from icy cold to just a feeling of smoothness where the epidural is acting.
The consultant appears & checks that I can cough without pain. He's keen to get the physio in to start exercises (but I have already been 'pedalling' my feet) as well as getting me out of bed. I'm to have 3 Fortisips per day ( I think at first he means 40 sips of water! ) - rather sickly sweet thick drinks to supply protein, carbs & nutrition and I'm allowed to sip water too. He gives instructions about removing the line from my neck and the arterial line. Some have to remain for regular blood tests & the drip (saline & paracetemol). I have a male nurse by this time, who deals with it all. The physio does visit but says it will be easier when I'm on the ward. I'm passing wind (rather feebly) which is a good sign.
There is a problem finding me space on the urology ward but eventually at 1.45pm I'm wheeled off - sandals tucked at the bottom of my bed & plastic box with specs & watch to hand - and put in a single room. My husband comes to visit. After he has left, I am moved to a 4 bed bay. By 6 pm I am feeling unwell with pain & urine leaking from the stents. The pain control team visit to sort this but the physio doesn't return. I'm glad to be left in bed. It's very hot and they put a fan by my bed. My hands and arms are very swollen - fluid retention. Eventually my bag reaches me, although there's nothing I want out of it at that time. The medics do their evening rounds. The night passes with regular obs being taken. Intermittent sleep.
Sat 3 Sep
Morning visit by the registrar. All going well. I'm given a bed bath - bliss. The pain control chap says the epidural appears to be favouring the left side - I have to be rolled to my right to spread it more evenly. (me hanging feebly on to the side rails while the staff reposition me.) Later in the day the physio gets me out of bed with two nurses to help shift and carry all the equipment - 5 bags hung round the bed plus drip stand. It's good to be upright for a short while but my head is very swimmy. I'm instructed on deep breathing, standing & leg exercises to do. They take me off the oxygen. I'm able to read a bit, but there's plenty going on to pass the time; obs, blood tests, monitoring my bags, watching the other occupants of the ward and various coming & goings. I doze quite a bit too. The nights continue to be interrupted during my stay with regular obs, drainage bags being emptied, a nightly anti clotting injection and beeping from my drip or someone else's, or needing to have my sheets changed because of the urine leaking from the stent connections. I usually have visitors afternoon and evening. It's good to chat.
Sun 4 Sep
Around 4 am I am very wet and in pain. When the nurses come to change my sheets, gown & dressings, they find that the urethral catheter has fallen out - the balloon keeping it in has somehow deflated. Calls to various personnel ensue - the registrar will come to fix the catheter but it will be much later before an anaethetist can visit. At 6 am I'm wheeled to the treatment room, still in considerable pain, for the pleasure of having a new catheter inserted. With hindsight, I think quite a bit of the pain was from urine burning my skin where the stents emerged - it was a continual struggle to mop up the various leaks all the time I was there. At 11 am the pain control team did call & upped the epidural. Certainly I had a very numb left hip but quite a lot of sensation on my right hand side - where all the leakage was. No interest in walking, although they do help me get out of bed to sit in a chair again.
I'm finding it hard to get through more than two Fortisips per day - I've had the vanilla & lemon flavours. They try me on Fortijuice instead. Just as sickly (lemon flavour), but more liquid. My blood oxygen is low & they put me back on the oxygen up my nose. I have to keep explaining that I don't like it tight against my neck, it's OK on my chin.
I'm relieved to find that I still feel I'm essentially me, despite all that has been done - no mourning lost bits!
Mon 5 Sep
Morning & evening rounds each day - frequently the consultant himself, but sometimes just the registrar. I'm getting more mobile in bed and a nurse helps me have a wash while sitting in the chair. I'm allowed to start eating although the consultant prefers me to concentrate on the Fortijuice - he scoffs at the toast & butter that I'm enjoying. He says to look on the special drinks as medicine. A nurse offers Forticreme (chocolate flavour) as an option which isn't so bad.
The physio plus nurses help me take a few steps to the end of the bed and back. (Or possibly the day before - hard to recall.) Mostly I sit & read on and off, or have a doze. I keep my legs moving, doing the exercises as instructed.
My haemoglobin level has been low & isn't picking up, so I'm given a unit of blood. I expect it to perk me up, but don't feel any different. I have the oxygen off at last - it's beginning to make my nose bleed. My hands & feet are still a bit swollen, but improving.
Tues 6 Sep
Today when I have my wash I feel very nauseous standing up & vomit. My head is still very swimmy so I decline to try walking when the physio comes, although I stay sitting up. The stents are continually coming apart & I seem to be constantly wet and uncomfortable. It's a challenge for the nurses to devise suitable covering with dressings. In the afternoon I'm wheeled off on my bed for a stentogram. The examination couch is positioned so I can shuffle from bed to couch with assistance (transferring all the bags & tubes). It's not very comfortable lying flat - better if I can bend my knees up. They have to disassemble the dressing holding the stents together & have some difficulties injecting the dye. I feel too weak and uncomfortable to take much interest. Eventually it's over and I'm taken back to the ward where my visitors are waiting. Typically this is the day that 6 friends choose to visit as well as family.
Wed 7 Sep
I manage my wash by myself OK - still with a bowl at the bedside. The epidural has to be switched off. I have to stay lying down for half an hour to avoid a headache. At least my back is more comfortable now - the tape securing the line had got rather lumpy. After that, when I'm sitting up again I get a burning feeling in my lower abdomen; I'm feeling a bit delirious with the pain. They give me some analgesic via a drip but say it won't have much effect yet. I go back to bed & the pain does subside. The drainage bags are changed to smaller ones strapped to my legs which makes me more mobile so I can get out of bed by myself. The stents are put in a stoma bag attached to my lower abdomen which makes me much drier. Both stents and catheters have been flushed daily - the days pass quickly with all the attention required. The stentogram has shown a small leak in the new plumbing, so the stents will have to stay in place for 6 weeks to ensure that no scarring occurs which might block the tubes.
Thurs 8 Sep
This should be my last day, but I haven't fulfilled any of the consultant's requirements such as walking and being instructed in flushing the tubes. He says it will be a busy day! I realise that the trapped wind feeling I've had for a few days is possibly need for bowels to function. I'm not sure if I can walk to the bathroom but they offer to bring a commode. After half an hour I've produced a minimal amount with great effort. I ask about the possibility of something to help, but they will have to wait for a prescription, so I do without.
The physio comes to get me walking but I feel too hot & unwell when we reach the corridor, so back to sit in my chair. Later, all by myself I do try a shuffle round the bed. Sister comes to help me have a shower. The bliss of being clean and dry with hair washed. I'm given fresh surgical stockings - dismayed to find I must wear them for 6 weeks! In the afternoon after my visitors leave I am instructed on how to flush the tubes with distilled water - not difficult as I've watched it being done for several days. A small syringe for the stents & a large one for the catheters. My surgeon is very particular about the precise amounts - it's to help clear mucous and ensure that the tubes stay patent.
By 5 pm I've still not walked down the corridor. Sister asks if I'd like to try but I've just woken from a doze. I ask if the consultant would let me home if I haven't walked, but she doesn't know. After a few minutes I feel more awake and decide to give it a go so we can at least say we tried. This time I get to the corridor and set off, a little shaky but then able to get going OK - we pass the consultant & entourage studying the patient board at the nurses' station. We reach the door & Sister is going to turn back but I'm game to try the stairs too. I manage up & down a short flight. As we head back down to my bay, the consultant watches. I say he bullied us into doing it, but he says, no, encouraged... Anyway, he gives the OK to go home although I just feel ready for sleep.
I have to wait for all the supplies I need to take home to be amassed - saline, syringes, bowls, wipes, spare bags. I cheer at the thought of being free of Fortijuice, but they bring a large bagful of those too. (I tell my husband to hide them when we get home - at a later date when I'm stronger I take them back and give them to my CNS.) Eventually we're ready to go at 9 pm. I go by wheelchair down to the exit. I have a total of 3 leg bags (soft drain on the right, suprapubic and urethral on the left) plus stoma bag for the stents.
It's terrific to be home but I just haul myself upstairs, desperate for bed. Another long but successful session on the toilet. A minor panic trying to find the vital connector to hook me up to a night drainage bag but we find it & I settle down. It's difficult to get comfortable with all the bags & tubes, but great to be back in my own bed.
Fri 9 Sep
Over the next days I manage to eat quite well, little & often and fairly normal food. I try to pack in lots of protein & carbs - dairy foods, fish and chicken. Bowels on the loose side. I manage a circuit of the garden which is about 100 m and build up with 200 m routes round the garden each day. Really weak and lacking stamina - I can manage my personal care but not much else. After a couple of days I manage to have a shower and am grateful for a stool to sit on while drying. I gradually remove the remainder of the dried blood on the incision. Quite a lot of time is taken up by changing dressings and the bag, as well as flushing the tubes. Otherwise lots of resting, napping, watching TV, reading & using my ipad. Concentration and making decisions is hard. Sleeping is difficult as I can't change position easily, as well as some abdominal discomfort. Occasionally the bag twists despite the tube being strapped to my leg. I've got the knack now of holding the tube up to let air into the bag to produce a flow rather than squeezing the bag which is liable to produce a leak instead. I have a few accidents forgetting to close the bag valve after emptying, as well as spillage on my clothing while doing so. I'm glad this isn't a permanent arrangement, but it is in a lower position than if it were. The District nurse visits & gives me some more spare dressings, plus a sharps bin for the small needles.
(When this is full, we take it to the GP for a replacement. When we need a second one, we are charged as for a prescription. They say I can claim this back if I'm exempt - apparently as a cancer patient I am. Wonder why no-one mentioned this. I fill in the form & in due course receive a card. We take this in to the surgery who are amazed that I was charged for a sharps bin at all. Anyway, money refunded and I now have an exemption card.)
Tues 13 Sep
An early start to return to hospital for a cystogram. I'm put in a treatment room as there are no beds. I have to put on a gown & am given a cannula for IV antibiotics as well as tablets. After a couple of hours I'm taken in a wheelchair to the other side of the hospital and left to wait outside the scanning room. They apologise for keeping me waiting - I wish I'd brought my book with me instead of leaving it on the ward. A few times I get up and walk about a bit. Eventually I'm taken in and the test doesn't take long. Dye is spilt on my leg so I have a pink splodge on my surgical stockings. The screen shows my staples and some other odd bits & pieces as well as the new plumbing. It looks a strange shape, but thankfully, no leaks. Back outside, a long wait to be taken back to the ward - I am getting very hungry & thirsty. The porters are chased up and I'm given some water. At last, back to the ward & I'm just in time to get some lunch.
A bed is found for me and I'm glad to have a rest - I'm given a single room this time. A nurse comes & removes the staples - not much discomfort. What had been quite a ridge starts to relax. There's still quite a bit of glue & marks around. Another nurse starts to take out the suprapubic catheter but it doesn't come easily. She doesn't want to pull, so goes off to call a medic. I'm left stranded until they return. A bit of lubricant squirted in & the tube slides out.
The consultant does his evening round & asks me to come back on Thurs to have the catheter out & go solo with my new bladder.
Wed 14 Sep
I've increased the distance walked each day and reckon I can now do half a mile. Late in the evening the consultant phones to defer my arrival time as they have a morning departmental meeting. They have a new consultant who will come with him to see me. He also tells me that the pathology report is all clear. I am pleased, but aware this is no guarantee of a cure. However he is optimistic that I now have a very good chance of staying cancer free.
Thurs 15 Sep
Arriving at the ward, I'm sat in the treatment room again and another cannula inserted. Late morning the consultant arrives, along with the new female consultant. He goes through his talk about the technique & regime for using the new bladder again & leaves me with the lady to check my pelvic floor. She does this via a rectal examination which startles my muscles but I manage to demonstrate an acceptable pelvic floor contraction. Then the Sister removes the soft drain & catheter and gives me a large incontinence pad. I'm surprised to find I don't immediately leak. I enjoy lunch while waiting for a bed - I'm given a single room again. Odd to be free of all the tubes & bags, apart from the stents. Daily anti-clotting Clexane injections are restarted and daily blood tests are done.
Now the regime starts. I have to attempt to hold urine for two hours, then empty my bladder. All my input & output has to be measured, so there is a cardboard dish in the toilet to collect urine and my wet pads are weighed. As the bladder fills I experience pain in my abdomen and lower back pain as well as nausea which is dismal. I set an alarm clock to get up at 10 pm, midnight, 3 am and 6 am in case the nurses forget to wake me. Not much sleep.
Coping with my new plumbing continues at A87732525 Living with bladder reconstruction - my story.
Mon 19 Sep
Continuing much the same. The consultant says if all the results are good today, I can go home. The daily blood test results are fine - they are checking the pH level. Because the new bladder is made of intestine, it absorbs substances from the urine and this can cause acidosis. I'm taught to give myself the Clexane injections in my abdomen. This time I keep asking for permission to go, I don't want to wait until evening ward rounds. The registrar has to contact the consultant and eventually gets the all clear. I get my Clexane supplies, a plastic measuring jug, paper charts and a bag of large incontinence pads and final instructions from the specialist nurse. Home I go about 6 pm, leaving a thank you card and box of biscuits for the staff.
I've already bought some disposable bed pads in case of night time leaks. I set my jug up in the bidet & put the chart with a pen on the shelf behind.
Wed 12 Oct
Gradually gaining strength & mobility. A good week - cooked dinner one day and did the laundry. Attended a local coffee morning and chaired a committee meeting. Felt good to be doing normal activities again. Everyone tells me how well I look - I conclude it's because I'm drinking so much more than before the op. Can only stand for a short while before abdominal discomfort, but keeping up with walking although I have to take fairly small steps and can't stand fully straight yet. Still some twinges with certain movements and tender wound. I tire easily and still have some difficulties concentrating. Bowels have settled to fairly normal action. Allowed to discard the surgical stockings - just as the weather turns colder!
Wed 19 Oct
I go to the ward again, for stent removal. I feel a bit low after having attended a village event at the weekend but found it very tiring seeing lots of people and not being able to join in as I normally would. I'm also taking antibiotics in preparation for the hospital visit, which have given me very loose bowels. They don't have a bed ready, so I sit in the waiting area for a couple of hours. I'm admitted just in time for lunch, a single room in the gynae section. In the afternoon a nurse first cuts the stitches - rather a sore process - then pulls out each stent in turn - a painless procedure.
Then follows a long afternoon and evening having obs at intervals - no visit from doctor other than to take bloods. A very disturbed night as I'm opposite a storeroom which is frequently visited, accompanied by the door banging each time. However, temperature stays normal although bowels still very loose so I'm not able to record urine output properly.
Thurs 20 Oct
I'm disappointed that the morning round is headed by the lady consultant (instead of my surgeon), who gives me the OK to go home. But I have to wait for more blood tests and the specialist nurse. She pops in but goes away again, eventually returning about 1 pm. Home by 2 pm and I manage choir rehearsal that evening - so much more comfortable without the stents, although the wound is still sore. I can wear jeans again.
Fri 21 Oct
Celebrated my son's birthday by having lunch out, which went well.
Mon 24 Oct
Drove the car - short trip with hubby in case of problems. Checked I could do an emergency stop without pain. Felt fine.
Thur 27 Oct
In a fragile mood - feeling absurdly upset at not having seen my surgeon last week. A mix up at the GP's surgery about an appt to renew my medical certificate has me in tears - turns out to be productive as the receptionist gets it sorted out quickly. I'm signed off work for another month. Emotional ups & downs are really to be expected after such major surgery. Hubby commented that I have sometimes been 'a bit short' - I think I've been remarkably restrained!
Wed 2 Nov
I'm picking up all my leisure activities again, but haven't much stamina. My abdomen is looking much smoother now - the scar measures 9".
Thurs 24 Nov
I have a 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. It's my surgeon who comes in to see me. He's pleased with my recovery and says my abdomen looks good - no sign of hernia (& no bag!), so tells me I can start doing more. I tell him I'm very 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. The next step is a renogram, to check that my kidneys are draining properly. (He also books a cystoscopy to investigate my difficulty emptying my new bladder.)
Wed 30 Nov
I have the renogram. This involves drinking plenty in advance and a pint immediately before the test. I also have to empty my bladder - catheterising when in a hurry never goes as smoothly of course. Then I lie on a padded table while they give me an injection of radioactive dye. For about 20 mins pictures appear on the screen above my head - the imaging machinery must all be under the table. About part way through they inject a diuretic. Then I have to empty my bladder again - this time in the 'female radioactive toilet'. By the time I get home, an hour or so later, I am bursting to go again.
Report tells me kidneys are draining well, which is good.
Tues 6 Dec
First day back at work - wonderful, but glad to leave early. Problems sorting out the mandatory referral to occupation health as they don't work the same days as me!
Fri 23 Dec
Back to DSU -usual procedure, ready for action by 7.30 am. I'm back on the ward at 9.00am. I have a drip, which I haven't usually had - whatever is in it perks me up no end! I manage to cook the Christmas dinner although the rest of the week I'm laid low with the cold which moves into my sinuses.
2012
Mon 23 Jan
I'm now back at work my usual two days a week but shorter hours & doing my usual daily activities. Some soreness reaching up or twisting and tire very easily - keeping up plenty of fluids and snacks & have put a few pounds on. Clinic appt. - first of all a medical student comes in to take a potted history. I'm happy to oblige. My consultant follows & we discuss my voiding difficulty - to be followed up with the specialist nurse. He approved me fit to travel & arranged a chest X-ray for my 3 month cancer follow up. Subsequent clinic report, all clear.
End of February
I still have twinges from the stent scar & soft drain scar if stretched. Massaging & gentle exercise helps gradually ease these. Some general abdominal discomfort from time to time (often related to my new plumbing in operation). The main scar continues to be occasionally sore if I get hot and sweaty or after a lot of activity such as a day at work. The staple marks are fading but there is still an indelible pen mark on the soft drain scar!
Fatigue continues - I tire easily & still aim for about 10 hours in bed each night. Back to my usual work hours.
My fingernails suddenly start shearing off - probably a result of stress at the time of surgery.
Some emotional ups & downs still - sometimes suddenly hits me what a serious business this has all been.
April
Overall I feel fit and well after a holiday. The fatigue has lifted & I consider myself essentially recovered from the operation although I know to allow up to a year for strength to return. There is still a psychological effect, coming to terms with the magnitude of what has happened. My new function is becoming to feel quite normal. The physical scars, although very neat, will take time to fade. The indelible pen mark is still there!
July
I have ultrasound to look at my kidneys & new bladder - all well.
August
The first year post op approaches. I still have a sensitive area on my upper left abdomen that is slightly prominent and reacts to excess stretching or bending, or sometimes when my new bladder is very full. I assume this is where the mesentery is pulled down, attached to my new bladder - there's been a lot of internal rearrangement. I do some extra abdominal exercises and the discomfort lessens. Otherwise, I am much the same shape as pre-op. The narrower parts of the main scar are silvery other than when I'm hot. The stent & soft drain scars are slightly pulled in and the pen mark is still visible! Otherwise I feel very fit and well - partly as a result of maintaining a 2 L intake each day and doing more exercise. (I have taken up salsa aerobics.) I have new toilet habits now but I feel well recovered.
2013
March
Eighteen months post op & I'm feeling very fit and well. The extra exercise I'm doing is paying off. People are now saying how much better I look than a year ago. Some minor soreness when my neobladder is very full or after exertion eg twisting/stretching. Perhaps this is permanent. I consider myself otherwise fully recovered from the operation itself.
2016
September
Five years post op - statistically significant and it feels I've reached a milestone. At my annual checkup, the consultant I see agrees. My scar is very neat and barely visible round my navel, a slightly wider red mark in places lower down. No longer any abdominal discomfort unless very full or an occasional twinge from the soft drain scar (a bit like a dimple) when turning over in bed. I'm fit & well with no complications from the surgery. Digestion is possibly a little changed - more flatulence & I have occasional sudden loose bowels eg after a restaurant meal with a lot of fat. No regrets about my choice.
For new readers starting here, a brief summary.
On 6 April 2011 I was diagnosed with superficial bladder cancer. The tumour was removed 3 weeks later as day surgery and I hoped I would only need regular checks to have any recurrences similarly removed. Bladder cancer has the highest recurrence rate of any cancer and is the most expensive to treat because it usually requires lifetime follow up.
Unfortunately the pathology report revealed mine to be unusual - a superficial single small (2.5 cm) tumour but high grade (TaG3), meaning a risk of any recurrence becoming muscle invasive and spreading elsewhere. A biopsy confirmed that it was still superficial so my choices were immunotherapy (BCG vaccine into the bladder) or radical cystectomy (surgery to remove the bladder).
With immunotherapy there is a 50% or more chance of needing surgery at a later date - possibly with an invasive recurrence which means chemotherapy and a worse outlook. I opted for immediate surgery as having the best prospects. Another biopsy to determine the possible choice of urinary diversion options - bladder reconstruction was feasible for me.
Radical cystectomy & bladder reconstruction - the story starts here.
In the case of a cystectomy for cancer, the surgery involves removal of bladder and pelvic lymph nodes & formation of a urinary diversion. Adjacent structures are also removed in case cancer cells have infiltrated them. In women the uterus, ovaries & part of vagina are also removed, in men the prostate goes. The standard urinary diversion is a small part of the intestine linking ureters from kidney to an opening in the abdomen (a stoma) over which the patient wears a urostomy bag. For some patients it is possible to take a longer (approx 60 cm) section of intestine, reshape it into a pouch connecting ureters and urethra. This is an orthotopic ileal bladder substitute, sometimes called a neobladder. Learning to use this new equipment effectively can take many months but should allow the patient to void more or less normally.
Wed 31 Aug 2011
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 I have been given 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 Day Surgery Unit to open up. At 7.15 am I am admitted. It seems very odd to be waiting in the same area & using the same operating theatres for such a big operation as for the minor day cases. There is a lot more preparation this time & many people in & out of my cubicle. First of all, tagging on wrist & I bid farewell to hubby before I'm given a 'small enema' - syringed up my back passage. Not too unpleasant & I'm allowed to go to the toilet soon after. I change into a gown & the nurse puts thigh high surgical stockings on me. The registrar confirms the consent form, the nurses check various admin details. The anaethetist explains how they will administer an epidural for post op pain relief, summarises benefits & risks, tells me about where I will be & what happens when I wake up. I'm pleased to see my consultant who asks if I have any questions. I say that I feel I should have, but can't think of any - he replies that's good, I should feel well informed. He primes me to give a brief description of the op when asked in theatre. The specialist nurse comes to mark me up for a stoma. This is always done just in case for some reason the intended procedure is not possible. I have to stand, sit, bend over, indicate usual trouser & underwear position while the nurse tries different positions for her black dot sticker. Eventually she draws the spot on my skin & tells me I will have quite a few more marks later - the consultant draws line across the incision to be able line up the edges well when closing up.
About 8.30 am the anaethetist walks me off to theatre. All very familiar as this is the fourth time in a six months. However this time I leave my bag (tagged) in the cubicle, but carry with me a plastic box for my watch & specs and I'm wearing my own sandals. I note that the operating table has substantial padding on it, so I should be comfortable! I have to sit on it sideways with my feet on a stool while the anaethetist sets up the epidural. Local anaesthetic first, then pushing & prodding. It seems to take a while but finally he is satisfied and sticky tapes the thin plastic catheter up my back & over my shoulder. While I'm still sitting up, the consultant asks me for my description of the op - 'removal of bladder & few other bits and new bladder made from a section of intestine' goes down OK. I'm still feeling quite calm about it all.
I lie down & they start the process of inserting lines in veins. First one in the back of my hand fails (not for the first time) so they have to use the back of my wrist. For the first time I feel a little fazed as I see the surgeons in the adjacent scrub room. Other arm now cannulated, oxygen mask on & I'm off to sleep.
As I learn later, about 2 pm the surgeons take a break. The consultant phones my husband to tell him all is going well - the necessary bits removed and reconstruction to be done next. The surgery is completed by 6 pm - a total of about 7 hours work. Another call to my husband to say I will soon be brought round & taken to recovery.
About 7 pm I wake in the DSU recovery ward. The anaethetist warns me that I may have a sore throat as they had some difficulty intubating me. He's right - but it eased after about 12 hours. Otherwise there is no pain although I feel a bit uncomfortable with tubes & lines attached to many parts. Around 8 pm they wheel me to the hospital's main recovery ward where I am allocated to a nurse who stays by me. I am sufficiently awake to review my situation & mumble to the nurse to move bedding & tubes off my neck as they make me nauseous. There are two lines in my left arm - one venous, the other arterial - one in my right arm attached to a drip and another line in my neck. No nasogastric tube thankfully, but I have oxygen tubes to my nose. There are two catheters to my left, urethral & suprapubic. On the right of my abdomen two small tubes (stents), and a soft drain. As well as all this, a cuff on my upper arm & blood oxygen clip on a finger completes the set. A hospital gown is just laid on top. The consultant pops in in & comments how amazed he is at being able to converse so soon after all that has been done. He says there was no sign of spread - I had almost forgotten why I was having the op. Later I hear a telephone which turns out to be husband calling - they hold it to my head so we can have a few words. The night passes with a change of staff and I doze, woken by the bed rippling, the blood pressure cuff tightening or having to change position. The nurse complains that I slip down the bed - not deliberately, I insist - which makes me chesty. It's quite a job to haul me back up on the sheet. A few other patients come & go, with a variety of conditions - it's certainly quite busy by mid morning.
Fri 2 Sep
My husband telephones again early in the day - this time I can hold the phone & we have a more coherent conversation. Two nurses clean me up with wipes and the registrar comes by to inspect the wound. It looks disappointingly quite a prominent ridge, stapled from just above navel down as far as I can see - now minus pubic hair too. My abdomen looks quite lumpy and not at all empty or floppy. All numb from the epidural. They check this by running an ice cube down my front from shoulder to knee, each side. The sensation goes from icy cold to just a feeling of smoothness where the epidural is acting.
The consultant appears & checks that I can cough without pain. He's keen to get the physio in to start exercises (but I have already been 'pedalling' my feet) as well as getting me out of bed. I'm to have 3 Fortisips per day ( I think at first he means 40 sips of water! ) - rather sickly sweet thick drinks to supply protein, carbs & nutrition and I'm allowed to sip water too. He gives instructions about removing the line from my neck and the arterial line. Some have to remain for regular blood tests & the drip (saline & paracetemol). I have a male nurse by this time, who deals with it all. The physio does visit but says it will be easier when I'm on the ward. I'm passing wind (rather feebly) which is a good sign.
There is a problem finding me space on the urology ward but eventually at 1.45pm I'm wheeled off - sandals tucked at the bottom of my bed & plastic box with specs & watch to hand - and put in a single room. My husband comes to visit. After he has left, I am moved to a 4 bed bay. By 6 pm I am feeling unwell with pain & urine leaking from the stents. The pain control team visit to sort this but the physio doesn't return. I'm glad to be left in bed. It's very hot and they put a fan by my bed. My hands and arms are very swollen - fluid retention. Eventually my bag reaches me, although there's nothing I want out of it at that time. The medics do their evening rounds. The night passes with regular obs being taken. Intermittent sleep.
Sat 3 Sep
Morning visit by the registrar. All going well. I'm given a bed bath - bliss. The pain control chap says the epidural appears to be favouring the left side - I have to be rolled to my right to spread it more evenly. (me hanging feebly on to the side rails while the staff reposition me.) Later in the day the physio gets me out of bed with two nurses to help shift and carry all the equipment - 5 bags hung round the bed plus drip stand. It's good to be upright for a short while but my head is very swimmy. I'm instructed on deep breathing, standing & leg exercises to do. They take me off the oxygen. I'm able to read a bit, but there's plenty going on to pass the time; obs, blood tests, monitoring my bags, watching the other occupants of the ward and various coming & goings. I doze quite a bit too. The nights continue to be interrupted during my stay with regular obs, drainage bags being emptied, a nightly anti clotting injection and beeping from my drip or someone else's, or needing to have my sheets changed because of the urine leaking from the stent connections. I usually have visitors afternoon and evening. It's good to chat.
Sun 4 Sep
Around 4 am I am very wet and in pain. When the nurses come to change my sheets, gown & dressings, they find that the urethral catheter has fallen out - the balloon keeping it in has somehow deflated. Calls to various personnel ensue - the registrar will come to fix the catheter but it will be much later before an anaethetist can visit. At 6 am I'm wheeled to the treatment room, still in considerable pain, for the pleasure of having a new catheter inserted. With hindsight, I think quite a bit of the pain was from urine burning my skin where the stents emerged - it was a continual struggle to mop up the various leaks all the time I was there. At 11 am the pain control team did call & upped the epidural. Certainly I had a very numb left hip but quite a lot of sensation on my right hand side - where all the leakage was. No interest in walking, although they do help me get out of bed to sit in a chair again.
I'm finding it hard to get through more than two Fortisips per day - I've had the vanilla & lemon flavours. They try me on Fortijuice instead. Just as sickly (lemon flavour), but more liquid. My blood oxygen is low & they put me back on the oxygen up my nose. I have to keep explaining that I don't like it tight against my neck, it's OK on my chin.
I'm relieved to find that I still feel I'm essentially me, despite all that has been done - no mourning lost bits!
Mon 5 Sep
Morning & evening rounds each day - frequently the consultant himself, but sometimes just the registrar. I'm getting more mobile in bed and a nurse helps me have a wash while sitting in the chair. I'm allowed to start eating although the consultant prefers me to concentrate on the Fortijuice - he scoffs at the toast & butter that I'm enjoying. He says to look on the special drinks as medicine. A nurse offers Forticreme (chocolate flavour) as an option which isn't so bad.
The physio plus nurses help me take a few steps to the end of the bed and back. (Or possibly the day before - hard to recall.) Mostly I sit & read on and off, or have a doze. I keep my legs moving, doing the exercises as instructed.
My haemoglobin level has been low & isn't picking up, so I'm given a unit of blood. I expect it to perk me up, but don't feel any different. I have the oxygen off at last - it's beginning to make my nose bleed. My hands & feet are still a bit swollen, but improving.
Tues 6 Sep
Today when I have my wash I feel very nauseous standing up & vomit. My head is still very swimmy so I decline to try walking when the physio comes, although I stay sitting up. The stents are continually coming apart & I seem to be constantly wet and uncomfortable. It's a challenge for the nurses to devise suitable covering with dressings. In the afternoon I'm wheeled off on my bed for a stentogram. The examination couch is positioned so I can shuffle from bed to couch with assistance (transferring all the bags & tubes). It's not very comfortable lying flat - better if I can bend my knees up. They have to disassemble the dressing holding the stents together & have some difficulties injecting the dye. I feel too weak and uncomfortable to take much interest. Eventually it's over and I'm taken back to the ward where my visitors are waiting. Typically this is the day that 6 friends choose to visit as well as family.
Wed 7 Sep
I manage my wash by myself OK - still with a bowl at the bedside. The epidural has to be switched off. I have to stay lying down for half an hour to avoid a headache. At least my back is more comfortable now - the tape securing the line had got rather lumpy. After that, when I'm sitting up again I get a burning feeling in my lower abdomen; I'm feeling a bit delirious with the pain. They give me some analgesic via a drip but say it won't have much effect yet. I go back to bed & the pain does subside. The drainage bags are changed to smaller ones strapped to my legs which makes me more mobile so I can get out of bed by myself. The stents are put in a stoma bag attached to my lower abdomen which makes me much drier. Both stents and catheters have been flushed daily - the days pass quickly with all the attention required. The stentogram has shown a small leak in the new plumbing, so the stents will have to stay in place for 6 weeks to ensure that no scarring occurs which might block the tubes.
Thurs 8 Sep
This should be my last day, but I haven't fulfilled any of the consultant's requirements such as walking and being instructed in flushing the tubes. He says it will be a busy day! I realise that the trapped wind feeling I've had for a few days is possibly need for bowels to function. I'm not sure if I can walk to the bathroom but they offer to bring a commode. After half an hour I've produced a minimal amount with great effort. I ask about the possibility of something to help, but they will have to wait for a prescription, so I do without.
The physio comes to get me walking but I feel too hot & unwell when we reach the corridor, so back to sit in my chair. Later, all by myself I do try a shuffle round the bed. Sister comes to help me have a shower. The bliss of being clean and dry with hair washed. I'm given fresh surgical stockings - dismayed to find I must wear them for 6 weeks! In the afternoon after my visitors leave I am instructed on how to flush the tubes with distilled water - not difficult as I've watched it being done for several days. A small syringe for the stents & a large one for the catheters. My surgeon is very particular about the precise amounts - it's to help clear mucous and ensure that the tubes stay patent.
By 5 pm I've still not walked down the corridor. Sister asks if I'd like to try but I've just woken from a doze. I ask if the consultant would let me home if I haven't walked, but she doesn't know. After a few minutes I feel more awake and decide to give it a go so we can at least say we tried. This time I get to the corridor and set off, a little shaky but then able to get going OK - we pass the consultant & entourage studying the patient board at the nurses' station. We reach the door & Sister is going to turn back but I'm game to try the stairs too. I manage up & down a short flight. As we head back down to my bay, the consultant watches. I say he bullied us into doing it, but he says, no, encouraged... Anyway, he gives the OK to go home although I just feel ready for sleep.
I have to wait for all the supplies I need to take home to be amassed - saline, syringes, bowls, wipes, spare bags. I cheer at the thought of being free of Fortijuice, but they bring a large bagful of those too. (I tell my husband to hide them when we get home - at a later date when I'm stronger I take them back and give them to my CNS.) Eventually we're ready to go at 9 pm. I go by wheelchair down to the exit. I have a total of 3 leg bags (soft drain on the right, suprapubic and urethral on the left) plus stoma bag for the stents.
It's terrific to be home but I just haul myself upstairs, desperate for bed. Another long but successful session on the toilet. A minor panic trying to find the vital connector to hook me up to a night drainage bag but we find it & I settle down. It's difficult to get comfortable with all the bags & tubes, but great to be back in my own bed.
Fri 9 Sep
Over the next days I manage to eat quite well, little & often and fairly normal food. I try to pack in lots of protein & carbs - dairy foods, fish and chicken. Bowels on the loose side. I manage a circuit of the garden which is about 100 m and build up with 200 m routes round the garden each day. Really weak and lacking stamina - I can manage my personal care but not much else. After a couple of days I manage to have a shower and am grateful for a stool to sit on while drying. I gradually remove the remainder of the dried blood on the incision. Quite a lot of time is taken up by changing dressings and the bag, as well as flushing the tubes. Otherwise lots of resting, napping, watching TV, reading & using my ipad. Concentration and making decisions is hard. Sleeping is difficult as I can't change position easily, as well as some abdominal discomfort. Occasionally the bag twists despite the tube being strapped to my leg. I've got the knack now of holding the tube up to let air into the bag to produce a flow rather than squeezing the bag which is liable to produce a leak instead. I have a few accidents forgetting to close the bag valve after emptying, as well as spillage on my clothing while doing so. I'm glad this isn't a permanent arrangement, but it is in a lower position than if it were. The District nurse visits & gives me some more spare dressings, plus a sharps bin for the small needles.
(When this is full, we take it to the GP for a replacement. When we need a second one, we are charged as for a prescription. They say I can claim this back if I'm exempt - apparently as a cancer patient I am. Wonder why no-one mentioned this. I fill in the form & in due course receive a card. We take this in to the surgery who are amazed that I was charged for a sharps bin at all. Anyway, money refunded and I now have an exemption card.)
Tues 13 Sep
An early start to return to hospital for a cystogram. I'm put in a treatment room as there are no beds. I have to put on a gown & am given a cannula for IV antibiotics as well as tablets. After a couple of hours I'm taken in a wheelchair to the other side of the hospital and left to wait outside the scanning room. They apologise for keeping me waiting - I wish I'd brought my book with me instead of leaving it on the ward. A few times I get up and walk about a bit. Eventually I'm taken in and the test doesn't take long. Dye is spilt on my leg so I have a pink splodge on my surgical stockings. The screen shows my staples and some other odd bits & pieces as well as the new plumbing. It looks a strange shape, but thankfully, no leaks. Back outside, a long wait to be taken back to the ward - I am getting very hungry & thirsty. The porters are chased up and I'm given some water. At last, back to the ward & I'm just in time to get some lunch.
A bed is found for me and I'm glad to have a rest - I'm given a single room this time. A nurse comes & removes the staples - not much discomfort. What had been quite a ridge starts to relax. There's still quite a bit of glue & marks around. Another nurse starts to take out the suprapubic catheter but it doesn't come easily. She doesn't want to pull, so goes off to call a medic. I'm left stranded until they return. A bit of lubricant squirted in & the tube slides out.
The consultant does his evening round & asks me to come back on Thurs to have the catheter out & go solo with my new bladder.
Wed 14 Sep
I've increased the distance walked each day and reckon I can now do half a mile. Late in the evening the consultant phones to defer my arrival time as they have a morning departmental meeting. They have a new consultant who will come with him to see me. He also tells me that the pathology report is all clear. I am pleased, but aware this is no guarantee of a cure. However he is optimistic that I now have a very good chance of staying cancer free.
Thurs 15 Sep
Arriving at the ward, I'm sat in the treatment room again and another cannula inserted. Late morning the consultant arrives, along with the new female consultant. He goes through his talk about the technique & regime for using the new bladder again & leaves me with the lady to check my pelvic floor. She does this via a rectal examination which startles my muscles but I manage to demonstrate an acceptable pelvic floor contraction. Then the Sister removes the soft drain & catheter and gives me a large incontinence pad. I'm surprised to find I don't immediately leak. I enjoy lunch while waiting for a bed - I'm given a single room again. Odd to be free of all the tubes & bags, apart from the stents. Daily anti-clotting Clexane injections are restarted and daily blood tests are done.
Now the regime starts. I have to attempt to hold urine for two hours, then empty my bladder. All my input & output has to be measured, so there is a cardboard dish in the toilet to collect urine and my wet pads are weighed. As the bladder fills I experience pain in my abdomen and lower back pain as well as nausea which is dismal. I set an alarm clock to get up at 10 pm, midnight, 3 am and 6 am in case the nurses forget to wake me. Not much sleep.
Coping with my new plumbing continues at A87732525 Living with bladder reconstruction - my story.
Mon 19 Sep
Continuing much the same. The consultant says if all the results are good today, I can go home. The daily blood test results are fine - they are checking the pH level. Because the new bladder is made of intestine, it absorbs substances from the urine and this can cause acidosis. I'm taught to give myself the Clexane injections in my abdomen. This time I keep asking for permission to go, I don't want to wait until evening ward rounds. The registrar has to contact the consultant and eventually gets the all clear. I get my Clexane supplies, a plastic measuring jug, paper charts and a bag of large incontinence pads and final instructions from the specialist nurse. Home I go about 6 pm, leaving a thank you card and box of biscuits for the staff.
I've already bought some disposable bed pads in case of night time leaks. I set my jug up in the bidet & put the chart with a pen on the shelf behind.
Wed 12 Oct
Gradually gaining strength & mobility. A good week - cooked dinner one day and did the laundry. Attended a local coffee morning and chaired a committee meeting. Felt good to be doing normal activities again. Everyone tells me how well I look - I conclude it's because I'm drinking so much more than before the op. Can only stand for a short while before abdominal discomfort, but keeping up with walking although I have to take fairly small steps and can't stand fully straight yet. Still some twinges with certain movements and tender wound. I tire easily and still have some difficulties concentrating. Bowels have settled to fairly normal action. Allowed to discard the surgical stockings - just as the weather turns colder!
Wed 19 Oct
I go to the ward again, for stent removal. I feel a bit low after having attended a village event at the weekend but found it very tiring seeing lots of people and not being able to join in as I normally would. I'm also taking antibiotics in preparation for the hospital visit, which have given me very loose bowels. They don't have a bed ready, so I sit in the waiting area for a couple of hours. I'm admitted just in time for lunch, a single room in the gynae section. In the afternoon a nurse first cuts the stitches - rather a sore process - then pulls out each stent in turn - a painless procedure.
Then follows a long afternoon and evening having obs at intervals - no visit from doctor other than to take bloods. A very disturbed night as I'm opposite a storeroom which is frequently visited, accompanied by the door banging each time. However, temperature stays normal although bowels still very loose so I'm not able to record urine output properly.
Thurs 20 Oct
I'm disappointed that the morning round is headed by the lady consultant (instead of my surgeon), who gives me the OK to go home. But I have to wait for more blood tests and the specialist nurse. She pops in but goes away again, eventually returning about 1 pm. Home by 2 pm and I manage choir rehearsal that evening - so much more comfortable without the stents, although the wound is still sore. I can wear jeans again.
Fri 21 Oct
Celebrated my son's birthday by having lunch out, which went well.
Mon 24 Oct
Drove the car - short trip with hubby in case of problems. Checked I could do an emergency stop without pain. Felt fine.
Thur 27 Oct
In a fragile mood - feeling absurdly upset at not having seen my surgeon last week. A mix up at the GP's surgery about an appt to renew my medical certificate has me in tears - turns out to be productive as the receptionist gets it sorted out quickly. I'm signed off work for another month. Emotional ups & downs are really to be expected after such major surgery. Hubby commented that I have sometimes been 'a bit short' - I think I've been remarkably restrained!
Wed 2 Nov
I'm picking up all my leisure activities again, but haven't much stamina. My abdomen is looking much smoother now - the scar measures 9".
Thurs 24 Nov
I have a 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. It's my surgeon who comes in to see me. He's pleased with my recovery and says my abdomen looks good - no sign of hernia (& no bag!), so tells me I can start doing more. I tell him I'm very 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. The next step is a renogram, to check that my kidneys are draining properly. (He also books a cystoscopy to investigate my difficulty emptying my new bladder.)
Wed 30 Nov
I have the renogram. This involves drinking plenty in advance and a pint immediately before the test. I also have to empty my bladder - catheterising when in a hurry never goes as smoothly of course. Then I lie on a padded table while they give me an injection of radioactive dye. For about 20 mins pictures appear on the screen above my head - the imaging machinery must all be under the table. About part way through they inject a diuretic. Then I have to empty my bladder again - this time in the 'female radioactive toilet'. By the time I get home, an hour or so later, I am bursting to go again.
Report tells me kidneys are draining well, which is good.
Tues 6 Dec
First day back at work - wonderful, but glad to leave early. Problems sorting out the mandatory referral to occupation health as they don't work the same days as me!
Fri 23 Dec
Back to DSU -usual procedure, ready for action by 7.30 am. I'm back on the ward at 9.00am. I have a drip, which I haven't usually had - whatever is in it perks me up no end! I manage to cook the Christmas dinner although the rest of the week I'm laid low with the cold which moves into my sinuses.
2012
Mon 23 Jan
I'm now back at work my usual two days a week but shorter hours & doing my usual daily activities. Some soreness reaching up or twisting and tire very easily - keeping up plenty of fluids and snacks & have put a few pounds on. Clinic appt. - first of all a medical student comes in to take a potted history. I'm happy to oblige. My consultant follows & we discuss my voiding difficulty - to be followed up with the specialist nurse. He approved me fit to travel & arranged a chest X-ray for my 3 month cancer follow up. Subsequent clinic report, all clear.
End of February
I still have twinges from the stent scar & soft drain scar if stretched. Massaging & gentle exercise helps gradually ease these. Some general abdominal discomfort from time to time (often related to my new plumbing in operation). The main scar continues to be occasionally sore if I get hot and sweaty or after a lot of activity such as a day at work. The staple marks are fading but there is still an indelible pen mark on the soft drain scar!
Fatigue continues - I tire easily & still aim for about 10 hours in bed each night. Back to my usual work hours.
My fingernails suddenly start shearing off - probably a result of stress at the time of surgery.
Some emotional ups & downs still - sometimes suddenly hits me what a serious business this has all been.
April
Overall I feel fit and well after a holiday. The fatigue has lifted & I consider myself essentially recovered from the operation although I know to allow up to a year for strength to return. There is still a psychological effect, coming to terms with the magnitude of what has happened. My new function is becoming to feel quite normal. The physical scars, although very neat, will take time to fade. The indelible pen mark is still there!
July
I have ultrasound to look at my kidneys & new bladder - all well.
August
The first year post op approaches. I still have a sensitive area on my upper left abdomen that is slightly prominent and reacts to excess stretching or bending, or sometimes when my new bladder is very full. I assume this is where the mesentery is pulled down, attached to my new bladder - there's been a lot of internal rearrangement. I do some extra abdominal exercises and the discomfort lessens. Otherwise, I am much the same shape as pre-op. The narrower parts of the main scar are silvery other than when I'm hot. The stent & soft drain scars are slightly pulled in and the pen mark is still visible! Otherwise I feel very fit and well - partly as a result of maintaining a 2 L intake each day and doing more exercise. (I have taken up salsa aerobics.) I have new toilet habits now but I feel well recovered.
2013
March
Eighteen months post op & I'm feeling very fit and well. The extra exercise I'm doing is paying off. People are now saying how much better I look than a year ago. Some minor soreness when my neobladder is very full or after exertion eg twisting/stretching. Perhaps this is permanent. I consider myself otherwise fully recovered from the operation itself.
2016
September
Five years post op - statistically significant and it feels I've reached a milestone. At my annual checkup, the consultant I see agrees. My scar is very neat and barely visible round my navel, a slightly wider red mark in places lower down. No longer any abdominal discomfort unless very full or an occasional twinge from the soft drain scar (a bit like a dimple) when turning over in bed. I'm fit & well with no complications from the surgery. Digestion is possibly a little changed - more flatulence & I have occasional sudden loose bowels eg after a restaurant meal with a lot of fat. No regrets about my choice.
