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PERSONAL STORY – PHIL KELLY
Let’s start with the good news first – I have recently passed the important cancer survival timescale of 5 years post initial diagnosis. I’m alive – and well! So that’s all Good!!
True – I no longer have a bladder (nor a prostate and various other ‘bits and pieces’); In ow wee into a urine bag on my abdomen (a urostomy pouch). But then, I had the most aggressive form of bladder cancer: most people with bladder cancer don’t and will not need radical treatment. For me, some things have changed – but I am leading a full and very active life, doing most of what I used to do before,enjoying various UK, European and some long haul holidays, spending as much time as we can manage with our grandchildren, going to music gigs and continuing to partake in a sensible level of social drinking. When I talk about my experience of having bladder cancer, I usually describe myself as being one of the lucky ‘unlucky ones’ – it had been a bit of a roller coaster experience, especially during the first couple of years. But - and it’s a big ‘but’ - I might not have been here – and I am. You could probably say that I am now ‘cured’ – though I don’t like to use that word – not wanting to tempt providence …
Enough! I’m getting ahead of myself – let’s go back to the start of my bladder cancer story.
Symptoms and Testing
It came out of the blue…. Except it was red – very red, bright red, alarmingly red! For a man!!
I looked down in the toilet and there it was – blood in my wee (they call it haematuria). It only happened the one time. I was lucky - it wasn’t something you could miss – or ignore. Although, scared as I was when I saw it, I was thinking that perhaps I should wait to see if it happened again. Fortunately, my wife has a lot more common sense than I do – and she insisted that I call the GP practice to arrange an appointment ASAP.
When I saw my GP a couple of days later, she asked me if I had had any other symptoms and I said, at first, that I didn’t think I had. I was pretty fit and generally very healthy. We’re walkers and have a little dog, so lots of daily exercise was the norm. She went through a set of questions from a list on her computer:
The presenting symptom of one very clear case of blood in my urine was obvious, but she asked if I had previously noticed that my urine had been bloody or discoloured or strong smelling? My answer was No. I later learnt that haematuria (blood in your urine) is the most common symptom of bladder cancer.
· She didn’t ask if I had had repeated, recurrent, long-lasting or difficult to treat urine infections – she didn’t need to ask – she had my medical records in front of her and urine infections are not something you (and she) wouldn’t be aware of. These symptoms are also a common indicator of bladder cancer.
· She asked if I had been having to pass urine more frequently or more suddenly than usual? My answer was No.
· She asked if it was painful when my bladder was full or when weeing? No to both.
· She asked if I had been feeling very tired or having problems sleeping? Again No.
· There were some other questions that I can’t remember – the answer was always No.
Then, when I thought about it, I remembered that I had been feeling more tired after a good dog walk or after driving the car for a long time and had had a nagging intermittent ache in my lower back. Nothing too bad or anything I would go to the doctor about. But my GP was interested and did take it seriously. She arranged for urine and blood tests to be done right away, to see if I had a urine infection and, I realised afterwards, to check if there were traces of blood still in my urine. A urine infection could be a possible explanation for the blood in my wee and the ache in my kidney area. It came as a surprise to me when I received a phone call from her a day or so later – it was a Friday evening and my GP was calling me at home after 7.00 p.m. at night!
She explained that my urine test was clear, so it wasn’t a urine infection; she wanted to let me know right away as she was going off on holiday that night; she told me she had already referred me to the Haematuria Clinic at my local hospital for some more tests. She had also arranged for one of her colleagues to phone me on the following Monday morning to explain more fully about the Haematuria Clinic.
Needless to say, I was quickly on the internet to find out for myself and so, when one of the GPs from the practice did call me as arranged, I had already found out as much as I wanted to know at that time about what the Haematuria Clinic would entail.
This was my first experience of positive and prompt care – and another bit of good luck. Not all GPs are as quick or thorough as mine had been and there remains a concern, nationally, that some people with bladder cancer are not being picked up and referred on quickly enough. All the evidence supports the fact that the sooner any cancer is detected and treated – the better the outcomes are likely to be. There is also an issue re later detection and referral (on average) for women who have bladder cancer. Probably relating to the most common and most obvious symptom being blood in your urine and the complicating factor for women of menstruation and/or gynaecological conditions.
And so …
I attended the Haematuria Clinic and had a number of investigations – including an ultrasound scan followed by what was to be the first of many cystoscopies (an internal camera examination of the inside of my bladder by means of a flexible tube threaded through my penis). A fairly surreal and uncomfortable experience but one you do get used, to over time. You get to see the progress of the camera on a TV screen (if you choose to) as it travels through your urethra (the tube down which urine passes from your bladder). For men it then passes through the prostate (that bit can be a bit sore– so they invite you to cough – which helps) and on into your bladder itself.
And yes – I/they saw a mushroom shaped growth and I started to get a sense of apprehension. I had done a bit of background reading – online – so wasn’t too surprised when we were, subsequently, taken into a side area for ‘the discussion’ – with lots of explanation and re-assurance. I was glad that my wife had come with me and so she was able to be there to hear (and to help to remember) what was being said. The Haematuria Clinic itself was staffed by senior nurses (Clinical Nurse Specialists), their approach throughout was very personal, respectful and sensitive whilst continuing to be very professional, honest and informative. We weren’t told that it was definitely bladder cancer of course, that would come later, but were informed that it could be and that I would need to have an operation to remove the growth (now being called a tumour) and to take biopsies to confirm what it was. My second experience of positive and sensitive care. It was to be an almost universal experience in relation to all the nursing staff that helped to care and treat me over the following years.
The staff at the Haematuria Clinic provided a batch of written booklets explaining what would happen next - the TURBT operation – TransUrethral Resection of a Bladder Tumour. They weren’t able to give a date for when that might be but said that I would be getting a letter from the hospital where I would have the surgery.
I didn’t know until fairly recently that not every Trust has a dedicated Haematuria Clinic and you may, instead, be referred to a hospital Consultant (a Urologist) who will arrange the same set of tests and investigations and will undertake the cystectomy him or herself. It is, essentially, the same kind of experience. I wasn’t to see my Consultant until immediately before my TURBT when he called to see me briefly to sign the consent form.
Everything up to this point (the prompt referral by the GP and the thorough testing at the Haematuria Clinic) had seemed like my situation was being taken seriously and with a sense of urgency. Things were about to change.
Waiting – and Worrying (it’s the worst part)
No letter arrived and there was no communication with me over the next 2 weeks. My anxiety levels were starting to build. I wanted this operation done and to get some answers as to exactly what the tumour was – cancer – or not. So…
I had been told which Consultant (Urologist) would be doing the op – so, in the end, I contacted his secretary to try to get a date – or at least some information as to when I might hear. Fortunately, she was able to look it up and confirmed that I had been scheduled to have my TURBT just under 2 weeks later. I was to use this route to seek information on several occasions thereafter. It was to be the only reliable way to find anything out!
I never did receive a letter but did get a phone call a couple of days later – inviting me to attend hospital the next day for my Pre-Assessment (blood tests, height/weight measurement for the anaesthetic, MRSA check, ECG, etc.). And a week later I became an inpatient for only the second time in my life. Some things had changed since my first time in hospital; some of the medical staff (doctors) came and sat next to your bed to discuss your ‘case’, pulled the curtains round and spoke quietly and directly to you. Some things hadn’t changed, there were still a few medical staff who stood at the end of the bed to ‘discuss’your case and everyone else’s with everyone in the 4 bed bay listening. The food hadn’t improved at all and the nurses were still wonderful – but there just weren’t enough of them and they were seriously over-worked – especially at night. Famously, I received my post-op one-off dose of chemotherapy drug (Mitomycin C) at midnight – when the charge nurse finally managed to make sufficient time to get all her protective clothing on and complete the instillation (insertion of the drug into your bladder through the catheter that was in place to drain urine and blood following the TURBT). The next morning I was seen on ‘doctors’ rounds’ by the Trainee Urologist who had undertaken my TURBT. A fairly young man – but very nice indeed with a good bedside manner. So I ventured the question – him having seen (and removed) my tumour(s) – more than one it transpired – I asked what he thought it might be - based on his experience. He was re-assuring – telling me that, from what he had seen, he didn’t think I was going to have any big problems. Wrong on so many levels! I shouldn’t have put him ‘on the spot’ and he shouldn’t have said anything – because the truth is, as I was to discover subsequently, they really don’t know until the tumour and any biopsy materials have been fully examined by the pathology lab – which takes a week or more. The whole inpatient experience was a bit of a mixed bag – but more good than bad.
Then more waiting!! And this time, it really did seem like an eternity. I had been told by my Consultant and at discharge that I would have an outpatient appointment to get the results of the biopsy within 3 weeks. 2 weeks later, still no letter, and another phone call to the Medical Secretary to try to find out when I would be seen. She wasn’t able to say, she informed me that my Consultant was on holiday but, very helpfully again, did agree to chase it up. Later that same day I received a phone call – inviting me in to a ‘Special’ Outpatient Clinic that had been arranged for the Saturday morning. Alarm bells were starting to ring.
I arrived, with my wife as support, to find that I was the only person there. I was seen by a different Trainee Urologist and he told me, not necessarily in the most sensitive manner that, yes, it was bladder cancer and was a very aggressive form of bladder cancer (in fact the most aggressive form – Grade 3). Not at all helpfully, he said that it was thought to be Stage either Ta (which is non-muscle invasive and has only penetrated into the bladder lining layer) or possibly T1 (which means that it had penetrated into the second layer- the connective tissue layer), but that there hadn’t been enough muscle tissue in the sample tested to be certain – so I was to have another TURBT to get a better sample – with muscle. He said that I would need to wait for another 6 weeks before they could do the second TURBT (called a re-resection) and when we said we had a holiday planned for around that time and asked if it could be delayed until we got back home – re-assured us that that would be fine.
We noticed that the nursing sister standing behind him when he gave us this news was shaking her head and she made a point of accompanying us out of the room and told us in no uncertain terms that we definitely shouldn’t delay the second operation and should cancel or re-arrange our holiday. She gave us the contact number for the Clinical Nurse Specialist and suggested we call her ASAP to discuss what was happening.
More waiting! Only this time we had become alarmed and confused. Why did they need to do a second operation? Why hadn’t they taken enough muscle to be able to check properly? What were the risks of this further delay to me receiving any treatment for what they had now told me was the most aggressive form of bladder cancer?
I am a bit of a ‘terrier’ and wasn’t prepared to leave it there. I did make calls to the Clinical Nurse Specialist, several, in fact, over the next week or so and did finally manage to have a conversation with her. She had been at the meeting that had discussed my case and the results of the biopsies. She confirmed that it was Grade 3, that there were more than one tumour, that yes – there hadn’t been enough muscle tissue to be sure about the Stage (Ta or T1) and she also was very clear re cancelling our holiday plans and avoiding any delay. I went back to my Consultant’s secretary,seeking a timescale for the second operation and asking to see my Consultant. I spent the next couple of weeks pursuing clarification and, eventually, managed to arrange to see my Consultant just before I was due to be re-admitted.
By then I had had an IVU (a Urogram X-ray examination of my whole urinary system - bladder/kidney/ureters etc – with an injected dye that would help to highlight any remaining or additional cancer – elsewhere. We went to the outpatient appointment with my Consultant armed with a list of questions. We never did get to ask them. He proceeded to bluntly present the results of my original TURBT and biopsies – clearly not having read my file and unaware that we had been given the results (for what they were worth) several weeks earlier by one of his Registrars (a Trainee Urologist). He did provide some more information about the number/sizes of tumours and where they had been sited in my bladder – apparently in an unusual place where the bladder wall was thinner and where removing tumours and taking samples was trickier because of the risk of perforation. He did explain (briefly) re treatment options –once we/he was clear re whether or not the cancer was in the muscle. If it wasn’t - then he described me having BCG Treatments and VERY close monitoring. If it was – he said that there were 2 options: bladder removal or radiotherapy (+chemo?). So, it seemed, they were even more uncertain about it than we had thought. We had been told it was either Ta or T1 – the possibility of it being muscle invasive (Stage T2) hadn’t previously been put forward. Not very re-assuring you might say!
The second operation was duly completed on a day patient basis and the now familiar pattern of me chasing people to try to find out dates and timescales for getting the results followed. Eventually, I was able to confirm an Outpatient appointment within 2/3 weeks of the op. This time at an, even busier, Outpatient Clinic than usual we were invited to see yet another Registrar. Oh dear! This one was even worse!
PERSONALSTORY PART TWO - PHIL KELLY
I have to apologise, this is me finally getting around to completing my personal story some years after I started it......
In my defence, I've been quite busy as a trustee for ABC UK undertaking a lot of work to assist them in developing a range of patient information materials (booklets, information sheets and a patient decision aid for High Risk NMIBC) as well as responding to a lot of patient enquiries. And just getting on with life.....
I'm now approaching the tenth anniversary of my original bladder cancer diagnosis - back in August 2010.
The Story Continues: "If only I knew Then what I know Now!"
He clearly hadn't read my file beforehand (he was flicking through pages as we went into the room) and he started talking about me having the second op soon. There began a process of him getting the situation re what had been undertaken and what was planned wrong repeatedly - with me and my wife having to correct him time and again. Eventually, he left the room and went to speak to my consultant and/or one of the nurses and came back with something resembling some of the correct information. Essentially, he was confirming what I had learnt from my prior phone calls to my consultant's secretary and my CNS - that they had got muscle in the samples this time and could confirm that it was G3 Ta (or maybe T1 - they weren't sure) and definitely not muscle invasive- which was a great relief. He told me that arrangements were being made for me to have BCG treatment. That was a decision that had been made - for me - it didn't seem to be a matter of choice or me being involved in a discussion about any options. I may well have chosen to go for BCG anyway, though I was to know later that I should have been given an opportunity to consider the only realistic alternative for what I later understood to be High Risk Non Muscle Invasive Bladder Cancer - i.e. bladder removal.
[This whole episode had been extremely stressful and anxiety provoking for myself and my wife. It felt like they just hadn't done a good enough job with the initial TURBT and were having to repeat the procedure with yet further delay to my treatment. The treatment that I hoped would get rid of my cancer. When, much later on, I eventually managed to discover an actual standard pathway description document for my version of bladder cancer - it became evident that a second TURBT procedure was the right ‘gold standard' approach given my grade and stage - to ensure that the diagnosis was correct, that all tumour had been removed and that my cancer wasn't muscle invasive. And, of course, as I was to understand much later - the 1st TURBT is actually part of the treatment for your bladder cancer and not just part of the diagnosis. It is intended to remove the cancerous tumours and, yes, they can then be used for diagnosis. If only they had explained this properly!!]
We pressed him for details and timescales for the course of BCG treatment; he wasn't able to provide it but did, eventually, arrange for us to proceed to the Day Procedure Unit (which was where patients were given their BCG treatment) to find out more. Which we did do. We were given a couple of leaflets and informed that we would get a letter with dates.
[This particular Registrar was to feature prominently in my patient story - at a later point. And not in a good way.....]
BCG Treatment: A Positive Option for Most - Just not for Me
BCG instillations, as they call them, are a very intimate experience - varying somewhat for men and women - a little bit intimidating in theory - and quite a bit embarrassing and peculiar in practice - especially the very first time. But it isn't too different to your previous experience of a cystoscopy and this time the tube is much thinner.
But it isn't every day that a nice nurse takes it upon herself to grasp your quickly disappearing penis, and inject a local anaesthetic gel into the opening of your urethra (at the end of your penis) and then proceed to feed a plastic tube into that opening and through your ‘tubes',passing your prostate on the way, and into your bladder. For men, the point when it passes the prostate can be a little bit uncomfortable (and, occasionally a bit painful) - depending on the expertise of the nurse doing it. I was to discover that the advice given by one nurse about coughing at that particular point in the process would usually avoid the discomfort.
Once inserted, the BCG in liquid form is pushed through the tube with a ‘syringe' and the tube then extracted - which is usually not problematic and a bit of a relief.
At this stage, there are different approaches in different hospitals. In my day, you were asked to roll over a few times to ensure the BCG was mixed around your bladder and then allowed to rest a little time on the bed. But then you were expected to go home to complete the 2 hours ‘dwell time' for the BCG inside your bladder - without being able to go to the toilet. In my case, that meant a half hour drive to get home - subject to traffic delays.
And then it's a case of endeavouring to keep it in your bladder for the rest of the 2 hours. Me being me - I was determined to do so - and, if I could, a little bit extra even. Not a sensible approach - especially at a later stage when I started to have some real discomfort. Finally, you move on to the very satisfying process of emptying your bladder with care, adding bleach before flushing and drinking lots of fluids to flush your bladder and urinary system through.
[For a large proportion of High Risk NMIBC patients, BCG works well. They don't experience any significant difficulties or side effects and feel quite well throughout - other than a little tiredness or slight discomfort for a day or two after each instillation. The side or after effects do tend to get a bit stronger after each course for some. Others just sail through. The survival statistics suggest that 75/80% of people having BCG treatment survive for 5 years. A small proportion of them may have had to have their bladder removed along the way. But, for a lot of people, BCG may be the only treatment that is required. However, for the other 20/25% of patients - it just isn't going to work. Either they will have recurrences anyway and/or they will not be able to tolerate the BCG; I wasn't able to tolerate it. The problem being that, at this time, they still aren't able to identify those that will benefit - and those that won't. If you have High Risk NMIBC - perhaps have a look at the Patient Decision Aid that I helped to develop recently - it appears elsewhere on this website - see the links at the end of my story]
Me and BCG
It all continued quite well for the first 4 (of 6) Induction Course of instillations. I experienced a range of nurses with varying levels of skill and differing techniques. But by the fifth instillation - it was starting to be quite uncomfortable to the point of being somewhat painful and with longer after effects. The final instillation of the six was distinctly difficult for me. But hey - it was over - for a while at least - and I was pleased that I had gone the full course. The standard follow up with check cystoscopy was completed - with no recurrence evident and the 3 Maintenance Instillations were then scheduled.
That's where things started to go badly wrong for me......
I had a very strong reaction to the first of the three planned instillations and pushed my urology service for an explanation and some other steps to help me tolerate the BCG. In the end, I managed to speak to my consultant's Registrar and he suggested a thinner catheter may help as it was likely to be a physical problem with that - or a reaction of some kind to the plastic catheter.
The thinner catheter was duly used the next time but, on that occasion, my reaction was extremely severe and after much further discussion - it was decided to abandon any further BCG treatments. I pushed for an opportunity to discuss the situation with my consultant - who had, by then, returned from holiday leave and had made the decision to stop BCG immediately.
By that stage, I had started to do my own research on the internet and had found some relevant information about BCG treatment on an American website (I couldn't find anything in the UK). I, subsequently, made contact by email with Dr Lamm, the American urologist who was responsible for establishing the standard BCG treatment regimen and he actually replied to me personally. I'd read on his website about the use of different doses, dwell times and the use of anti-inflammatory drugs to enable those who have a reaction to BCG to continue to be treated.
When I met with my consultant I went ‘armed' with my newly acquired knowledge and a determination to try to push for a different approach to the BCG treatment. I was met with a complete refusal to consider adopting any change in the standard approach. I was offered just to be closely monitored with periodic cystoscopies and scans and re-assured that they would deal with any recurrences. I knew that, given my stage and grade, there was a likelihood that it would recur - and could progress; I asked if they would also undertake regular urine cytology testing - which I had learnt was a good additional indicator of recurrence (for high grade cancer). Again - this was brushed off as not necessary. I wasn't at all happy with the situation but seemed to have no other option but to accept it.
Surveillance - it just wasn't good enough for Me
What was being offered was called surveillance and I knew by then that that wasn't a good enough approach so far as I was concerned - especially having done my own research and knowing the strong possibility of recurrence and the potential for my cancer to progress to muscle invasive - with significant implications for my survival.
Aftera further period of several months of anxious waiting to see what happens and a further cystoscopy by the Registrar that I had had a bad experience with previously, I decided that I wasn't going to settle for the situation as it was. So....
[What I later discovered should have happened at this stage was that I should have been referred on to my regional Specialist Urology Service for a full consideration of all other alternative treatment options - including bladder removal]
I took it upon myself to undertake some further research with a view to securing a second opinion. But where was I to find someone better?
Second Opinion and Change of Hospital Trust
I started by looking on all the UK websites I could find, NHS or otherwise, but, in the end, found that I could get more detailed information about individual Urologists via the Shire (Private) Hospital websites. I did a search of all the regional Shire facilities and found someone in another part of Yorkshire (Wakefield) that seemed to have a special interest in Bladder Cancer, was a researcher and educator (of other urologists). I approached my GP and she was happy to make a Choose and Book appointment with him for my second opinion.
When I, subsequently, met with this Urologist (based in what I came to understand was a Specialist Urology Service) I was immediately impressed. In an extended discussion of my medical history he provided a far fuller and clearer explanation of my specific diagnosis, the risks involved and the approach that would be pursued in his service. I made an immediate decision to transfer my care to this man. A bit of a ‘leap in the dark' admittedly but probably the best decision I could have made - as proved to be the case.
[If you aren't happy with the treatment and care that you are receiving, then the first step is to discuss it with your clinical team; if you continue to be unhappy then you have the right to ask them to arrange a second opinion - or you can pursue one through your own GP. You can also change your care over to another hospital trust - as I did. It isn't a step to be taken lightly.
A second opinion may also be relevant if you have one of the rarer forms of bladder cancer (e.g. small cell carcinoma). Your local Urology Service may not have experience of treating such rare variants and a more specialised opinion from an expert in the field may be something to consider]
As part of my transfer of care to the team in Wakefield, arrangements were made by my new consultant for me to be scheduled for an early cystoscopy. He undertook the cystoscopy personally and, at this first check, a recurrence was detected and a suspicious "red patch" that I had observed myself at the last check in my former hospital but which had been ignored as just irritation.
The response to the recurrence led to a wholly more satisfactory process of immediate pre-assessment for surgery and a phone call (rather than second class letter) - just two days later - to negotiate a convenient date to go ahead. The TURBT procedure and histology confirmed recurrence and progression (to include Carcinoma in Situ). In the follow up discussions with my new consultant and a detailed discussion about all available suitable options (there weren't many), I made a fairly easy decision to proceed with bladder removal and I had my cystectomy in December 2011.
Cystectomy - and Life after Cystectomy
Cystectomy involves removing the bladder plus other nearby organs and, usually, some lymph nodes. In men, this includes the prostate and seminal vesicles; in women it includes the uterus - possibly other nearby organs. It is, obviously, a major surgery and carries some risks - as do all such radical surgeries. In my day, there wasn't an option for anything other than open surgery but, these days, keyhole and robotic options are increasingly available which have a shorter post surgery recovery time. The surgery itself takes several hours (usually 6+) and you need a significant inpatient stay thereafter. Full recovery can take several months post discharge and a careful process of rehabilitation back to the full range of daily activities is recommended.
There are 3 main options regarding how you will pass urine thereafter. The longest established and most common is the construction of a stoma (a section of small bowel) that is used to create a means of connecting the kidneys and ureters to the outside of your abdomen. You attach urine collection bags over the stoma and empty the bag as necessary.
A more recent alternative is called a neobladder where they again use a section of small bowel but, this time, they create an internal substitute bladder inside your abdomen. You are able to pass urine in the normal way - once this newly created substitute bladder is ‘trained' to operate like a ‘normal' bladder.This latter can take some time.
The third option is called a Mitrofanoff pouch - which again uses a section of small bowel - this time creating an internal pouch in your abdomen that is emptied by self catheterisation. Whichever of the 3 options you choose - there are significant implications for your lifestyle and daily routines but all 3 will enable you to return to life almost as it was previously.
[There are information sheets about cystectomy and the 3 options available elsewhere on this website that provide more detail - see the links at the end of my story]
In my case, I was relatively young and in very good general health and was considered a good candidate for a neobladder but, after much consideration, I opted for a stoma. My decision was based mainly on it being the most tried and tested method - at that time. And the relatively shorter requirements for managing your new urine arrangements in recovery. We had recently, happily, become grandparents and I was keen to be able to travel down to see them - in London - as soon as I could. A stoma seemed to offer the shortest wait for me to be able to travel confidently without too many complications. It's very much a case of what can be achieved by your clinical team safely and your personal preferences. It's a big decision and one where you would benefit from careful consideration of all the pros and cons. An opportunity to speak to people who have experienced all options can also be helpful.
[This latter can be facilitated via ABC UK or The Urostomy Association]
I was very careful throughout my rehabilitation, not overdoing it, being careful with all heavy lifting etc and, in time, my new daily routines became just that.....
[As to the hospital inpatient experience - the nurses, doctors and ancillary staff were, almost without exception, wonderful. Completely overworked in the main. Don't get me started on hospital food - nor on some of the night staff. But, overall, my care was fantastic - I'm greatly indebted to the NHS. I'm also indebted to my local Stoma Nurse team who were literally ‘hands-on' in those early learning days and weeks and who have continued to offer guidance and assistance with any difficulties that have arisen.]
Post cystectomy, I considered myself to have been VERY lucky indeed; a 'survivor' keen to live life to the full and, as importantly, to give something back to the NHS and to help others with the same or similar challenges....
I had already become a bit of a Bladder Cancer 'man on a mission' - through the course of my various treatments and procedures - delving deep into the clinical details of my cancer and treatment options. Post recovery from surgery, I have gone on to become involved in a number of (mostly) Bladder Cancer related health 'projects'. That includes becoming a Patient Trustee with Action Bladder Cancer UK and, more recently, as a Patient Advisor
That's not everybody's choice, of course, a lot of people just wish to put their cancer experience behind them and get on with life - and that's absolutely understandable and fine.
I had had a lot of extremely positive experiences through my cancer ‘journey' as they say - but some that were not so good - and it had been quite scary and a very anxious experience for myself at times. Waiting for things to get done, waiting for the results and diagnosis, waiting to get letters and dates for appointments - just waiting in between - not knowing if you were still OK or would be OK - in the end.
If like me, you didn't know anyone else who had had bladder cancer - and definitely not anyone who was still having treatment - it can be a lonely place. I didn't get to talk to other bladder cancer patients until quite a long way through my ‘journey'.
I would have very much appreciated the chance to talk to others who had ‘been there' and had experience of the treatments I was going through. That's why I was keen to help ABC UK in their mission to help to establish more bladder cancer specific support groups (and linked support systems) in as many places as possible. I've helped to set up such a group in my own home area and continue to support those currently going through bladder cancer treatment locally.
Links to the ABC UK resources that Phil mentions in his story:
High Risk NMIBC: A Patient Decision Aid ABC-BLADDER-DECISION-AID-A5.pdf
ABC UK Information Sheets on bladder removal and bladder substitutes