29th March 2016

I hadn't posted any updates here for 10 days (or 12 days after I first contacted University College Hospital, London) because I was hoping to have some good news to add.

Sadly, I have made zero progress with UCHL in the last 12 days. I have phoned and e-mailed numerous people, and have been passed on to many other people, but no-one has been able to help me in any way. I fail to see what is so difficult .... I simply want an appointment with a specialist surgeon for the second TURBT examination followed by the radical cystectomy (if that is deemed necessary).

No wonder the NHS has such a bad reputation .... although I naively thought that coming in as a private patient would bring a more positive response than I have experienced so far, rather than having two of the people that I contacted openly lying to me.

I now have to wait until Thursday 31st May when the PA / Secretary to one of the surgeons is back from her holidays to find out if that surgeon wants to take on my case .... or find another specialist centre that is more interested than UCHL.

Ninth hospital visit (Saturday 19th March 2016)

The call back at 8:30 pm on Thursday evening from Dr. Hossam at Saudi German Hospital wasn't to tell me that the second TURBT operation had been arranged, but because he wanted to introduce me to Dr. Ahmed Hassan, the Consultant Urologist at Saudi German.

We arrived at 9:50 am for a 10:00 am appointment this morning, and then waited until 12:45 pm before Dr. Ahmed could see us. Whilst he was reading through the CT Scans and Pathologists reports (which he had not seen before), his colleague changed my catheter and colostomy bag.

Dr.  Ahmed then said that he feels my bladder can be saved with an aggressive TURBT resectoscopy (to remove as much of the tumour and cancer as possible, and to get the biopsy samples from specific locations as requested by the Pathologist for more accurate staging of the cancer) followed by 6 weeks of chemotherapy. Only if that fails to stop the spread of the cancer, and the Pathologist upgrades the cancer from minimum pT1 G3 to pT2G3, should a radical cystectomy be performed.

He was not concerned by the CT scan report of suggested tumour invasion into the perivesical fat on the outside of the bladder wall, because apparently this may have been caused by the TURBT operation. He needs to see a CT scan done before the TURBT resectoscopy, which was never done.

THOUGHTS

Do I push to get the second TURBT (and then the radical cystectomy, if required) done at a specialist cancer centre such as University College Hospital London as soon as possible, or do I let Dr. Ahmed try to save my bladder and loose valuable time in the process if this isn't successful (before then arranging to have the radical cystectomy done in England) ?

Just a quick rant (Thursday 17th March 2016)

The one thing that I didn't expect is all the running around - effectively Project Management tasks - which I have to do, to get the treatment that I urgently need. I naively thought that the hospital would take over and sort everything out for me, since that is what I and my health insurance are paying them for !!!

Despite the issues with the CT scan authorisation last week, I had to chase Saudi German Hospital again today for an update on the authorisation from my health insurance company, this time for the required second TURBT operation, which they applied for last Sunday. The hospital told me that they are still waiting for NextCare to authorise this operation .... when I phoned NextCare, they told me that they passed the authorisation on to Saudi German hospital last Monday. Another phone call back to the hospital, who suddenly confirmed that they have received the authorisation after all, so they will call me back later today with the date for this operation !!! (hopefully this Saturday)

Second Opinion (Wednesday 16th March 2016)

I was recommended to take all the reports and results to Dr. Moamen Mohammed Amin Abdelrahim at Zulekha Hospital, Dubai for a meeting this morning at 7:00 am for a second opinion.

It didn't start well .... firstly, the Zuleka Hospital does not offer any parking for any of its patients or their visitors, so I had to find a metered parking space outside the hospital grounds, then walk in. How do they expect elderly or less mobile patients / visitors to manage this ??

The next surprise was that in addition to the usual 20% of the consultancy fee not covered by my health insurance, I also had to pay an additional registration fee of Dhs. 60 (GBP 11,50 / US $ 16,30), since this was my first visit to this hospital.

I then had to wait for Dr. Moamen Mohammed Amin Abdelrahim .... my appointment with him was from 7:00 to 7:20 am, but he finally entered the hospital at 7:40 am.

Luckily, things began to improve after this rocky start to the day. Dr. Moamen confirmed that I must have a radical cystectomy, but this must be done in a specialist centre in England (not here, because no surgeon in the UAE has enough experience and the hospitals here don't have the required equipment). The second TURBT operation is also required, not only for the Pathologist to assess the tumour more accurately, but mainly to establish whether my urethra and sphincter is cancer-free (so can be retained for use with a neo-bladder), or if they must also be removed, I will require an external bag to collect the urine from the kidneys.

Dr. Moamen was concerned that the abdomen CT scan was only performed after the first TURBT operation, because he wanted to see (in more detail than an ultrasound scan can show) what the tumour looked like when first diagnosed.

THOUGHTS

I have to keep waiting until my health insurance finally approve the second TURBT operation, and once we have the Pathologist's report from this, I can start making arrangements for the radical cystectomy to be done in England - hopefully before the aggressive cancer tumour cells, which have already invaded into the perivesical fat on the outside of the bladder wall, break through the fat and spread further through my body, making treatment much more difficult, more expensive and with a significantly reduced chance of success.

Eighth hospital visit (Sunday 13th March 2016)

This visit was just to collect the Radiologist's report on the CT scans last Thursday, which luckily confirms that there is no evidence that the cancer has spread from the bladder into any other organs.

The next step is for a second resectoscopy, required by the Pathologist with samples from specific areas (rather than random biopsy material as last time) so that he can stage the cancer more accurately. Once properly staged, the Oncologist will decide if a radical cystectomy or only partial bladder removal is necessary.

My Urologist wants to take the opportunity of this second resectoscopy to remove as much of the remaining tumour as possible, which will be difficult, since it is mostly located on the front bladder wall and hence fairly inaccessible from a resectoscope that can't turn through 180 degrees.

THOUGHTS

The Urologist terminated the first resectoscopy after he almost perforated the bladder wall whilst cutting away as much of the tumour as possible. I would prefer if he only took the few specifically targetted biopsy samples for the Pathologist, and left the remaining tumour to be dealt with by the radical or partial cystectomy later.

Seventh hospital visit (Thursday 10th March 2016)

I got a phone call from the Saudi German Hospital yesterday, confirming that my health insurance had authorised both the abdominal and thorax CT scans, so an appointment was made for midday today. I was not allowed to eat or drink anything for at least 6 hours beforehand, and needed another blood test at 10:00 am (so that the results of this would be known just before the CT scans were performed).

Hence we left home at 8:00 am, and arrived at the hospital at 9:15 am - no traffic en route, because the schools were closed today after the massive thunderstorms and flooding yesterday.
The blood samples were taken at 9:45 am in the Laboratory, and all was well (the Creatinine level was at 92 μmol/L).
The CT scans were started at 11:45 am in the Radiology Department - once without contrast, then again after the contrast chemical had been injected into my arm.

We then went back to the Urology Department, where Dr. Hossam tried to analyse the results .... but unfortunately my bladder was completely empty (thanks to the catheter and 6 hours of no intake), so he couldn't determine anything. Hence he came with me back to Radiology, pumped a saline solution into my bladder until it was full, and the CT scans were redone.

The GOOD news (still to be officially confirmed by the Radiologist's report on Sunday) is that Dr. Hossam could see no indication of cancer present in my throat, lungs, chest or stomach. It seems that the cancer is still retained within my bladder and has not spread any further !!!

So the next stage (after seeing the Radiologist's report) is to have a meeting with the Consultant Uro-Oncologist. If he agrees with Dr, Hossan that I am a good candidate for radical cystectomy, an application for authorisation for this operation will be made to my health insurance company. If this is not approved quickly, they will proceed with chemotherapy next Tuesday, followed by an aggressive resectoscopy to remove as much of the tumor from the bladder as possible, as a stopgap until the radical cystectomy operation is authorised.

THOUGHTS

Obviously incredibly happy that the cancer has not spread any further than my bladder, but also worried about the severity of the operation required shortly.

Sixth hospital visit (Tuesday 8th March 2016)

I arrived at the Saudi German Hospital at 9:00 am, very late for my 8:20 am appointment (thanks to a huge car crash involving at least three vehicles that all but closed the E611 Emirates Road for an hour), but two of the Receptionists and several other staff were sitting in the same traffic jam and were just as late for work, so no-one was bothered.

I then had to collect the Mitomycin chemo from the hospital pharmacy, and was told that because I was booked in as an out-patient (instead of day care), my health insurance would only cover 80% of the cost, so I had to pay Dhs. 330 .... also, because my Urologist had signed the prescription, this was not acceptable, it must be issued by an Oncologist. After a 20 minute discussion, the Pharmacy eventually let me pay and take the drugs to my Urologist.

40mg of Mitomycin was mixed with about 3/4 litre of water, then pumped into my bladder through the catheter, which was then closed off (at 10:00 am). I was taken to another area of the hospital, and instructed to lie for 15 minutes on my back, then 15 minutes on my right side, then 15 minutes on my stomach, then 15 minutes on my left side, then my right side and back again. The nurse would return after 30 minutes to check on me, then again after 90 minutes to release the clamp on the catheter and let the spent chemo drugs drain away into my colostomy bag, which the Urologist would then examine.

Unfortunately, the nurse forgot to return after 30 minutes (and 90 minutes). After 2,5 hours, I found another nurse in this area, and asked if she could get a message to the Urology department nurse, to remind her about me. At 1:30 pm (after 3,5 hours in total), I decided to find my own way back to the Urology department, where the nurse unblocked the catheter.

My health insurance still hadn't authorised the required CT scans that were scheduled for today, so the Urologist asked me to chase them up directly. When I phoned them, they gave me the reference number for the authorisation of the abdominal CT scan (applied for by the hospital last Thursday and authorised on Friday), but claimed that the hospital never requested a CT scan of the thorax area, so they should file that request immediately.
Since this would take a couple of days for approval, the Urologist suggested that instead of doing the abdominal CT scan today (which was to see if the cancer tumor had breached the bladder wall and spread into my bloodstream) and the thorax CT scan later (to see if the cancer had spread to my lungs, chest or throat) and sending the insurance company two separate invoices, it would be much cheaper to wait and do both CT scans at the same time, as originally planned for today.

I then collected the images of the chest x-rays and ultrasonic scan of my bladder, plus the DVD of the resectoscopy operation on my bladder, before heading back home at 3:30 pm.


The current plan of the hospital is ....

1) bladder chemotherapy session today (completed)

2) abdominal and thorax CT scans to determine if the cancer has spread outside of the bladder (as soon as the health insurance authorises this)

3) another resectoscopy operation, but this time collecting biopsy samples from very specific locations of the bladder tumour as determined by the Pathologist (because he can't grade the tumour from the previous biopsy samples, he can only see an invasive tumour with aggressive cancer cells and harmless tumour cells, but doesn't know which were located where) 

4) if the cancer is restricted to the bladder, arrange for a radical cystectomy to remove the bladder, prostate, lymph nodes, etc.

5) if the cancer is not restricted to the bladder, continue with bladder chemotherapy plus normal chemotherapy, to try and eliminate the cancer from wherever it is (if the radical cystectomy is performed, I will be too weak to have chemotherapy, which will allow the cancer to spread elsewhere)

THOUGHTS

I am very grateful that the side effects from the Mitomycin chemotherapy are minimal - I only have a slight discomfort in my stomach, and I think that is left over from the resectoscopy last week rather than the bladder chemo session.
I am worried that the delay before further action - removing the bladder and the cancer with it - will allow the aggressive cancer to breach the bladder walls and spread into the rest of my body, but Dr. Hossan assures me that a few weeks delay will not make any difference, since the tumour has been growing inside my bladder unnoticed for between 2 and 3 years already.

Fifth hospital visit (Thursday 3rd March 2016)

The Saudi German Hospital phoned me at 9:30 am this morning, to inform me that Dr. Hossam had a large number of operations to perform today, so they had to cancel my appointment at 2:20 pm today.

At 1:15 pm, the hospital phoned me again, asking me to be there at 1:30 pm. I had to explain that because we live 95 kms away from the hospital, I need at least 1,5 hours notice, so the soonest that I could be there today was 3:00 pm.

On my arrival, Dr. Hossam pumped my bladder full of a clear liquid, then removed the catheter and asked me to pass urine. I had no feeling that I needed to go to the toilet, and even when I pushed hard, no urine came out .... it seems that the bladder muscle wall is now so weak or has been replaced by the tumor, so I no longer have any control over it ....hence I had to receive a new catheter and colostomy bag.

The results from the tumor samples (6cm x 4cm x 2cm) cut out of my bladder on Monday were back from the Pathology laboratory. It confirmed that I have bladder cancer, with a mixed tumor that is the same size as my bladder (and only half of the tumor was removed with the resectoscopy).

Dr. Hossam explained that the next steps are a CT scan (once authorisation for this has been granted by my health insurance) to establish whether the cancer has exited through the bladder walls and spread any further in my body, and to inject the chemotherapy drugs into my bladder (starting on Tuesday 8th March, then each Tuesday for the next 2 weeks, then miss a week, then another three sessions of chemo over the next three weeks), then do another (but more invasive) resectomy operation to try and remove the remains of the tumor. If that is not successful, he will have to consider removing the bladder.

THOUGHTS

If the tumor has embedded itself so deep into the muscle of the bladder wall that it could not be removed last Monday for fear of perforating the bladder wall .... and if this tumor then expands slightly further into the muscle wall and breaches it, I will have cancer cells traveling freely around in my bloodstream, looking for any other organ or location to attach themselves and start growing again. Why isn't the only known source and location of the cancer cells removed immediately ? I appreciate that bladder removal is a long and complicated operation with a typical recovery period of at least 3 months, but surely that is better than having to return to the hospital every 3 months for further cystology investigations to establish if the tumor is still growing, or has breached the bladder wall and spread elsewhere in my body ?

If the petrol tank on your car was wafer thin in several places and could break at any moment, pouring petrol onto a hot exhaust pipe and potentially causing a fatal explosion, would you try to guess where the weak spots in the petrol tank are and cover these up with sellotape ? or would you remove the dangerous petrol tank immediately and connect a few pipes from bottles full of petrol to feed into the engine, so that you could keep driving without risk of a fatal explosion ?

I have asked for a meeting with a Consultant Oncologist on my next visit to the Saudi German Hospital on Tuesday 8th March, preferably before the CT scan and chemotherapy, for a second opinion as to whether the bladder should be removed (and hopefully all cancer cells with it).

Fourth hospital visit (Monday 29th February 2016)

On arrival at the Saudi German Hospital at 6:30 am, I checked in and was taken to my room in the ward.

At 9:30 am, I was taken to the Radiology department for a chest x-ray (from the front and side).

The operation was scheduled for midday. At 12:40 pm, I was taken to the operating theatre, where the Anesthetist gave me an epidural whilst the rest of the team prepared the warm saline solutions that would be used to flush out my bladder during the operation. I asked to be sedated, but was told that there was no need.

The operation itself began at 1:00 pm. Dr. Hossam did an initial investigation with the cystoscope,

but then realised that the tumor in my bladder was significantly larger than he thought earlier. Hence he decided that instead of removing a small piece for the biopsy analysis, he would cut out as much as possible today, and hence he switched from a cystoscope to a resectoscope.

The operation lasted for 2 hours 15 minutes, with Dr. Hossam giving me a running commentary as I watched the images from the resectoscope on the monitor. He decided to end the operation when he couldn't cut any more of the tumor away, because it was embedded in the muscle wall of the bladder, and he feared that if he cut any deeper, he would perforate the bladder wall.

The reason why the harder that I tried to urinate, the less urine could exit, was now clear - a large piece of the tumor was covering the exit to the bladder, and when the urine was being pushed against the tumor, it completely sealed off the exit to the urethra and penis. This was one of the areas of the tumor that was removed during this resectoscopy.

I then spent an hour in the recovery area, before being returned to my room in the ward. I was given saline and antibiotic drips via the cannula in my left hand, with another saline solution flushing my bladder out via the catheter.

After a restless night (my lower back was incredibly sore after the anesthetic wore off), I was unplugged from the drips and irrigation at about 11:00 am on Tuesday 1st March, so could finally walk around a little. At 12:40 pm, I had a blue fluid (allegedly antibiotics) injected through the catheter into my bladder, and was told to lie for the next 15 minutes on my back, then 15 minutes on one side, 15 minutes on my stomach, and finally 15 minutes on my other side. After 1 hour, I was told to lie another 15 minutes on my back and 15 minutes on my right side (to give the largest remaining pieces of tumor an extra dose), and this fluid was drained out of my bladder after a total of 2,5 hours.
Shortly after that, I was discharged from hospital to go home, with an appointment to revisit on Thursday 3rd March for a checkup.

THOUGHTS

The resectoscope was not as bad as I had feared. It didn't seem real, watching the images from inside my bladder on a large monitor as many large pieces of the tumor were cut away and then extracted for later analysis in the Pathology laboratory.

Third hospital visit (Saturday 27th February 2016)

Saudi German Hospital phoned me at 8:30 am, saying that my health insurance had authorised the cystology and biopsy operation, so I needed to visit immediately to discuss this further.

After being informed by Dr. Hossan that the operation was scheduled for Monday 29th February, I had a meeting with the Anesthetist, and was informed that I would only receive an epidural / spinal anesthetic, so I would be awake during the operation.

Just before we left the hospital, further blood samples were taken.

THOUGHTS

I didn't know what was involved in a cystology and biopsy, so I didn't like the idea of being awake whilst the surgeons were digging around inside of me. The Anesthetist said that if I insisted, I could be sedated after the epidural , so would effectively sleep though the operation.   

Second hospital visit (Thursday 25th February 2016)

The Saudi German Hospital made a follow-up appointment for me for Thursday 25th February.

Dr. Hossam first ensured that my bladder was empty, then made an ultrasonic scan. He then removed the catheter, and told me to keep drinking water until I felt that my bladder was full and I needed to go to the toilet urgently, and he would then rescan the bladder. When I went to the toilet, he wanted to measure how much urine I could pass, and rescan the bladder again afterwards to see if I had fully emptied it.

After drinking more than 30 cups of water over a 1 hour period, I still didn't feel any need to go to the toilet. I was then sent off to the Radiology department for another ultrasonic scan, but with a higher resolution machine. Whilst waiting for this, I kept drinking water, and my stomach began to feel very painful. A few minutes later, I vomited about 1 litre of water out - it obviously couldn't pass into my full bladder, but my stomach didn't want to store it either.

Despite an obviously (over) full bladder, I could not pass any urine, no matter how hard I tried, so a new catheter was inserted into my bladder, to drain into the colostomy bag.

The ultrasonic scans showed that my bladder wall was about 4 cm thick (instead of only 1 cm), so I was told that I will need a cystology and biopsy next to establish why this is, followed by surgery to correct this. However, the hospital needed authorisation from my health insurance first before proceeding any further.

The PSA test results from the blood sample last week returned a value of 2.2 and 2.5 - apparently anything below 4 is normal and indicates that there is no prostate cancer. Dr. Hossam gave me a scan of my prostate through my rectum, which showed that I have about 4 stones in my prostate - these will have to be removed surgically later, but are not the cause of my urine retention, and hence this is not a major issue.

THOUGHTS

Relieved that I do not appear to have Prostrate Cancer, but the large tumor in my bladder was obviously a concern now.

First hospital visit (Thursday 18th February 2016)

On Thursday 18th February, I drove to the Saudi German hospital in Al Barsha, Dubai to see a Urologist (Dr. Hossam Saker Allahyani). He confirmed (via ultrasonic scans) that my bladder was full, and that I was suffering from urine retention despite a hugely inflated bladder. He inserted a catheter into my bladder via my penis, and over 2 litres of urine drained into the colostomy bag. Blood (and urine) samples were taken for analysis, specifically for the PSA test to establish if I had Prostate Cancer.

THOUGHTS

At this stage, I thought I only had a bladder infection. Although it was nice not feeling as if my bladder was about to burst all the time but still not be able to pass any urine, the catheter was a fairly stiff plastic tube, so every time I moved, it pulled or rubbed on the urethra (inside my penis), which was extremely uncomfortable .... and I could only lie on my back at night, so it was difficult sleeping.

Background

Starting in mid-November 2015 .... we went out for the day in our small fishing boat, and a couple of days later, I had a severe cough and sore throat, and started to have problems urinating. I visited our local GP practice, where the female Arabic doctor diagnosed acute bronchitis and an allergy to oranges.
After a 5 day course of antibiotics, my sore throat and constant coughing started to ease up, and my bladder no longer felt full the whole time.

About a month later, the same symptoms reappeared. Another visit to our local GP practice, where I saw the male Indian doctor - he diagnosed acute bronchitis and an allergy to sand and dust. After another 5 day course of antibiotics, my sore throat and constant coughing started to ease up, and my bladder no longer felt full the whole time.

Another month later (mid-January 2016), and the same symptoms reappeared yet again. After another 5 day course of antibiotics, my sore throat and constant coughing started to ease up, and my bladder no longer felt full the whole time.

Another month later (mid-February 2016), the same symptoms reappeared yet again. However, this time, my urine retention was much more serious. My bladder felt permanently full again, but only a few drops of urine (sometimes up to half a cup full) would come out whenever I went to the toilet.

Since it was obvious that the two local GPs had no idea, I checked which hospitals I was covered to visit under my health insurance, and made an appointment at one of these hospitals for a checkup.

Introduction

I will attempt to document my battle against bladder cancer and my emotions here, although I am sure there will be many times that I won't feel like posting any updates.