Bladder cancer story

Big Adventure Booked

2011-08-26T12:07:17Z

Surprise phone call this morning offering Fri 2 Sep.

So this time next week my RC & neobladder should be well under way. I feel as ready as could be, but I'm sure there will surprises to come. It will certainly be a novel experience & probably the hardest thing I've ever done.

Looking forward to visiting our new granddaughter in Japan next Spring.

Nearly there

2011-08-25T17:39:27Z

Final pre-op clinic appt Thurs 18.

Long wait & boss still held up when I was called in as a Fellow came in - asked about the patient experience so far. The ideal opportunity to praise the attention while there, but point out the stress of waiting at each stage, being misled about timescales etc. Registrar came in as well & got a brief resume!

CT & biopsy clear (effectively a 3 month check up) so all options open. Finally consultant appears apologetically as he had just been called to theatre. However, stayed to answer questions & gave me the first definite recommendation so far, against Mitrofanoff. So neobladder it will be. I asked for a date & was left with registrar to sort out. All he could do was say probably wk beg Sep 12 - so I pointed out that consultant had been misleading last time saying second half of Aug.

Should be contacted next week - ring if nothing by Wed....

So I rang Wed only to be told still no listing - waiting on consultant to arrange & they couldn't even say when I will know.

I'm thinking of writing something to give them as feedback - perhaps after the op might be better than before!

Feeling a bit cross

2011-08-11T13:25:20Z

Now that the consultant & specialist nurse are back from their hols (whereas I had to cancel mine) I rang to speak to the nurse on Monday. Yes, I've been discussed at the MDT last week, but the consultant has to look at the notes (after clinic on Tues) & set priority order for clinic appointments. Can't say which day it will be.

Today (Thurs) still no contact. Rang the clinic - no appointment date set yet. Will be in the next week or three - only one clinic day next week, with the registrar. Consultant is busy catching up on the backlog of surgery. But the wait for surgery will only be a week or two after clinic.

I appreciate that I'm not the most urgent patient - essentially I've just had a 3 month check up - but I feel I haven't been given realistic expectations about the pre-op process & when the op might be. They must have known about the hols & the catch up. Not that I'm looking forward to it, but I've now missed my' window of convenience'.

I'm fed up with all the waiting - to get dates for appointments, surgery, then for the event itself, then for the next event etc. & sometimes not much notice. I've not worked more than two & half weeks in a row (I only work part time anyway) since all this started & I don't like letting them down with short notice absence. I can't plan anything with any certainty.

Ah well, rant over. It will happen eventually & then I'll have bigger issues to be concerned about.

Still waiting

2011-07-26T14:44:15Z

Doesn't time move slowly sometimes.

I've now tried the pre-op stoma pack, talked to two patients & done more research. Everyone seems happy with their chosen op, but of course haven't been able to try the other to compare. Neither feels quite right for me.

Most seem to have had to have urgent surgery - my process feels immensely drawn out. I'm concious that it's now 3 months since the initial tumour was removed and I'm fearful that an invasive recurrence will pop up before I get to surgery.

Went for CT scan today - the nurse was sympathetic about the timescale - commented that they need to have all the info they can before such a major op. I do appreciate the thoroughness & time to choose, but wish it had been curtailed.

All this thinking time has brought me full circle to my original thought that a third option, only mentioned in passing & seems not offered to all, will suit me best - the Mitrofanoff continent urinary reservoir. Perhaps the need to self-catheterise puts people off.

While I was at the hospital I popped into the cancer support centre - had a weep & a chat. Home to prepare for day surgery tomorrow.

More choices

2011-07-12T12:54:14Z

Back to see the consultant today. Made the choice for surgery but now I have to choose stoma or orthotopic bladder. I had thought stoma, but he made the bladder substitute sound more appealing than I'd thought.However, if I want the latter, I need to have another biopsy, this time of the bladder/urethra area to check it's healthy.

A long chat with the consultant, followed by a session with a specialist nurse. I've come home with a goodie bag of samples & leaflets.

Whichever I choose, it'll still bl another clinic appointment for final briefing!

Time to choose

2011-06-30T10:07:40Z

The biopsy has confirmed TaG3, so I do have the choice of BCG or surgery. The doctor - a pleasant but young registrar - didn't have much information to add to what I'd already gleaned off the interent, but wouldn't let me decide there & then. At least he didn't try to sway me in either direction.

I have to back on July 12.

I can be grateful it's not worse and the sense of urgency has abated slightly.

Sleep deprived

2011-06-25T09:47:25Z

Oh for a good night's sleep.

Now I'm past the post-op frequent disturbance to visit the loo, I hoped for better nights. But I'm still either having difficulty getting off to sleep or waking too early.

I keep rehearsing possible scenarios & conversations with my consultant. Having decided (if I have a choice) that I want cystectomy for better prognosis rather than risk BCG failure, I'm worried that he may try to persuade me otherwise.

I guess the medics may feel that the chance of success & avoiding major surgery is worth the risk of progression.

My ipod is my night-time friend to stop my mind wandering!

Coping with family

2011-06-22T10:18:51Z

It's been difficult selecting what to tell family members.

Hubby doesn't have much medical know-how. I'm not always sure what he understands. He's been very supportive - saying it's my body & my decision. I explained that if I have a choice, I want to go for best odds for optimum outcome, even if it's a sledgehammer to crack a nut. He definitely doesn't want to think about the possibility of outliving me (even long term, let alone short term).

Sons have been given an edited version & are aware that I'm waiting to find out what treatment - I've said probablly surgery - will happen. As yet I haven't hinted at how big an op or the risk of a poor prognosis. I have warned them both that they are now at higher risk themselves. Neither appears unduly concerned at the moment.

My mother is the worst problem. She's 88 & is of course anxious - too much spare time to worry in. So far I've tried to present things in the best light and told her the absolute minimum. I took hubby's advice not to say too much too soon, but I find I'm resenting having to worry about her reaction to each bit of news or how to answer any questions she asks. I want to be honest but not overburden her, when the future is so uncertain.

Perhaps it will be better when I know for sure the next steps at least & can tell each what I feel they need to know. Then it will just be wait & see what happens.

What people think

2011-06-22T09:54:05Z

Now a week on after having my biopsy. Not nearly as bad as TURBT + mitomycin - no nausea or bladder cramps, much less swimmy head. Just need to build up stamina again ready for the next procedure.

Interesting the different assumptions & attitudes people have.

Many are surprised that I don't have any ongoing symptoms, so I make the point how insidious cancer can be & how important it is to have screening/act on any unusual signs or symptoms. I'll be going to hospital to feel worse not better...

If I imply that my lifespan may well be curtailed, I discover who is OK talking about death & who isn't. Some can cope with it as an abstract concept, or something way in the future (hopefully). Some can manage thinking about it happening personally & sooner rather than later.

I think many people interpret 'treatment' as 'cure'. Sometimes it is, but I know there's no guarantees for me. I'm discovering just how much is still unknown.

I'm hoping I'm better informed now & prepared to receive the next results.

Guilty of being crass?

2011-06-13T16:28:51Z

Having read the 'dumb things people say' forum, I feel a bit guilty myself.

When I was first diagnosed with superficial bladder cancer, I rather made light of it. My brother has had it & is now discharged after several recurrencies & then sufficient clear cystoscopies. I thought I'd be the same & before I got my histology results I made comments, rather to reassure my friends & colleagues, like 'some cancers aren't as bad as others' & 'if you've got to have cancer at least it's easy to treat because it's so accessible'. I said I was optimistic for a good propect.

Now I've had to start telling people actually it is rather serious after all... I shall wait until I get the next results & know exactly what I'm facing before I say any more.

Decision making is liberating

2011-06-10T11:24:01Z

If I have a choice between BCG & surgery, I've decided to opt for surgery. Having made this choice, I feel so much more at ease.

The prospect still feels somewhat surreal, but I hope that playing the scenario through in my mind will help me when it actually happens.

Unreality

2011-06-03T10:47:18Z

Here I am, feeling fit & well, apart from effects of stress, yet I am a person who has cancer.

I've had a bladder tumour removed, yet I have been told it may still be lurking deeper or even have spread.

I'm studying the sickness policy from work, cancelling a holiday & claiming for cancellation. Somehow telling my friends has been OK but dealing with this paperwork makes me feel it's really something serious.

It's the forthcoming surgery & subsequent intervention that will make me feel unwell. Having had one general anaesthetic for TURBT, at least I have some idea what to expect for the next day surgery visit.

At least I'm managing to get on with ordinary living in the meantime. I've no list of ambitions to fulfill so I'll stick to my day to day activtes.

the waiting game

2011-06-02T16:15:15Z

The waiting & uncertainty is hard. I like to be organised & plan ahead, which is impossible at the moment.

I've just got a date for my biopsy so I can gauge the timetable for the next few weeks at least.

We're expecting our first grandchild in the Summer - in Japan. It looks like we may have to make a trip out there at short notice, according to treatment/surgery schedule, rather than planned well in advance.

the story so far

2011-05-27T10:23:30Z

Diagnosed with superficial papillary type bladder cancer in March 2010. TURBT with mitomycin on 28 April.

Expecting regular follow up with removal of recurrences. My brother had bladder cancer diagnosed about 12 years ago but now discharged from follow up.

Follow up for histology results on 26 May. What a shock. It's grade 3. The Consultant suggests a further biopsy to check if it's already gone to the muscle wall. If so, cystectomy is the only option. If it was still superficial, they can offer BCG but once only. Any recurrence means a cystectomy.

I'm wondering if I'm wasting time having the biopsy to see if BCG is an option, when cystectomy now offers best prognosis. But wouldn't it be great if I can have BCG & don't get a recurrence.