I want to make clear from the very outset, I am writing about some very deeply personal issues which involve at this stage, my diagnosis of suspected Bladder Cancer. I am not writing it to gather sympathy, on the contrary. Despite what I do, I am just an ordinary 'bloke', with the same hopes, fears, beliefs and aspirations as anyone else. All too often ‘cancer’ is a word that shall not be named; it is the Voldemort of diseases. I am writing this because I want others to know that they are not alone; they are part of my journey and I am a part of theirs. I am writing this because it celebrates people and technology in which we wholeheartedly submit ourselves to, in a total unconditional trust. I am writing this because, yes, it includes Consumer issues (well what did you expect?), that have all the chances of overwhelming ordinary Consumers. This is my journey; a journey of fear, hope and love - a positive journey into the future.
The Beginning: Ground-Zero Day
The 4 March 2019 at 2.15pm in the afternoon, provided a jolt in the normality of my life.
In one sense I was not surprised by the news I received, but on the other hand, nothing can prepare you for the news that you may have Cancer and the picture displayed on a monitor next to you, offers a surreal snapshot of what is happening inside your body.
We recently moved house and as with all house moves, a change of Doctor became part of the move process.
My new Doctor required us to undergo a health-screening check, which involved blood and urine tests. My urine test provided an indication that there was blood present. It’s important to explain that the sample provided was essentially clear and that you would not detect blood with the naked eye.
I met with my new Doctor and he established that I had one ‘dehydrated’ day when I passed very dark coloured urine, but I had no other experience of dark-coloured urine. My new Doctor thought about the test and my one dehydrated experience; he decided that I should be referred for a check-up, just to be sure.
3 weeks later I received my appointment at which I would have an ultra-sound examination of my kidneys and bladder. I would also have a pre-examination consultation and this would be then followed by a cystoscopy.
In the weeks that followed, I maintained my own counsel about my up and coming appointment, and try as I could, I could not dismiss out of my mind that blood in my urine probably meant something of a serious nature.
The day came for me to attend the hospital which is next to the stunning backdrop of mountains, forests, and on the day, blue skies and dramatic sweeping cloud formations across that hopeful sky.
My initial examination was fairly uneventful, plenty of lube to help the scanner reveal the hidden secrets of my gut. I then went for my pre-examination consultation where I provided blood and urine, answers to health questions and a lower body examination. The urine sample provided was virtually clear but again blood was detected. I was advised that a CT scan would also be arranged to have a look at the kidney stones in more detail. The forthcoming procedure was explained to me and I signed a consent form; after all, I needed an answer - there would be no turning back!
I then had a 3 hour wait for my cystoscopy but arrived with my wife at the day-surgical unit. After a while I was called through and again underwent further examinations including providing yet another urine sample! Again this was a clear sample but the blood in the urine was at level 3+ which I was told was quite high.
I then had to change into theatre robes and waited in the small waiting room with the sounds of theatre-staff toing and froing and the sound of a ticking clock!
What seemed like an eternity eventually saw me being called through to theatre; responding to name, address and date of birth questions.
With my worldly possessions in a white patient bag, I entered the theatre and was asked to place my bag in the corner and get onto the theatre bed.
I was told to lie back and place my hands across my chest. My robes were lifted up, making me feel very vulnerable. I was then ‘cleaned’ and then a surgical cover was placed over the lower half of my body which had a small hole placed over my penis. The practitioner nurse who I had already met and was going to carry out the procedure came over to my bed and explained that she was going to start the procedure. She carefully lifted me through the discreet hole and provided yet more lube!
In order to keep me comfortable through the procedure, I had to have a local anaesthetic gel inserted into my urethra. I could feel the insertion of the gel which quickly turned into the sensation of a red hot poker, through my urethra and into my bladder; the sensation however only lasted about a minute. My nurse then explained that she was now going to insert the cystoscope.
For the men reading this, this is not as bad as it sounds. You can certainly feel the cystoscope being inserted but when it passes by your prostate, it is uncomfortable; I think I shouted out: “Jesus” - as if he would intervene!
To my left there was a monitor and all of a sudden I could see into my brightly illuminated bladder. As I looked on the monitor I couldn’t help think that I was looking at the new set of some Doctor Who episode, where he and his companions are trapped in the belly of the beast. Water insertion created the sensation that I needed to pee but this soon passed. I travelled through this universe where the walls looked smooth with the odd reveal of veins and a blood supply. This smooth journey was broken by my nurse saying that she had spotted something small at the entrance to the bladder.
The camera turned around and drew closer to the new focus of attention. There in front of me, was a flower-shaped protusion, rising up from the surface on my bladder. I was reassured that it looked much bigger than it actually was and that it really was quite ‘tiny’; it appeared to be resting on the surface of the bladder lining.
My focus was now completely on this ‘thing’, this ‘object’, but the camera had moved around, completing its examination of the entire surface area which then brought back into view, the ‘thing’.
My nurse then told me that she was going to withdraw the cystoscope and she did so without any adverse sensation; I was then covered up; it was here that the news I had suspected but hoped was just my overactive imagination, was revealed to me.
The ‘thing’ on the surface of my bladder was potentially cancerous and that I would need an operation to remove it. I found myself calmly asking questions for what seemed like a couple of minutes and then, without any warning, I burst into uncontrollable tears; sobbing, crying like a child.
Humanity in the room came to my rescue; a tender touch on my arm, offering up more of my blanket, a hand on my shoulder.
I quickly recovered, apologised, burst into tears, shouted out ‘Fuck’, calmed down, burst into tears and told my new friends of how I had seen someone years ago die a horrible death from bladder cancer.
Reassurance became my guide. This was ‘tiny’ less than one centimetre, it can be removed quickly, I would have a short burst of chemo and I would be subject to regular review; it all sounded so normal, so calm, so in control; I was not; I again burst into tears and asked to have my wife with me.
My nurse and the other staff helped me to make the passage from the theatre to a side cubicle, easily and without fuss. Moments later my wife came in; I remember screwing my face up and telling her that they had found something and tears flowed like a river, sobbing into my wife’s body. I can remember her tender touch and a conversation with my Nurse. It was emphasised that what was found was ‘tiny’ and she explained the procedure and how I would be kept on the radar. I can remember phasing between cold logic and objectivity and tears.
As the moments went by I realised I needed to get a grip and think about what was now my new reality with cool objectivity. I somehow managed to find my equilibrium, a glass of water and a determination to get this ‘thing’ out of me. I experienced calm. My nurse offered more reassurance and other staff told me we could stay for as long as we needed. I don’t know how long we were there for but eventually I decided it was time to leave, so I got dressed, had my ID tags cut off and thanked the staff for their kindness.
My wife and I then drove to Sainsburys; nothing like a dose of reality. I continued to feel strangely calm; logical; objective. We mused that if we hadn’t moved, it would have been unlikely that I would have had a urine test and my new experience would likely have been kicked down the road for a couple of years.
After we shopped, we returned home and continued as normal with our evening; watching our dose of catch-up TV and Netflix, peppered with my answering the day’s e mails. At one stage I decided to look at websites for information about bladder cancer; that was a big mistake - enough to frighten the shit out of you; I resolved that I would for the moment only talk to my Nurse.
That night, I held my wife’s hand and fell gently asleep.
The 5 March 2019 saw me wake early, lying there thinking about the previous day. I did feel fear and a determination. I eventually got up and carried on with my normal morning on the laptop, dealing with messages, particularly those highlighting the press coverage I received in Ireland.
Thoughts turned to family and how to explain this; ever the pragmatic one, my wife said that I would and should only tell the facts as we know them. I countered that whilst we don’t know if this is cancer, on the balance of probabilities it was likely that it was, albeit hopefully caught early. I would nonetheless stick to the plan; there have been too many health crises in the family this past 8 months without adding to the drama. Equally my mind turned to my son, a Junior Doctor, so happy at the moment, I want that to last a little while longer.
I later received a call from my Nurse. I wanted to thank her for her humanity. I wanted to thank her for her gentleness. I imagined her blushing on the end of the phone. We talked about what she found - at the entrance to the bladder; it was ‘tiny’, less than a centimetre; it will not take long to take out, chemo will be administered directly and immediately and I will have regular follow-ups. She wanted to know how I was. I suggested she could probably tell from my voice and questions. I had decided a clear head was best, sure, I would have private sorrowful moments, but I just wanted to get this ‘thing’ out. We talked about our long-standing forthcoming holiday to Cuba and whether to go for the op before travel or after, when I would be refreshed and perhaps avoiding complications. We agreed that I would talk to my wife and decide at my pre-op appointment.
That night I fell asleep touching my wife’s skin and slept well. The next morning I woke up with the morning light, went to the toilet; no sign of blood. I lay there thinking about what was happening and the need to keep my focus on projects and the things that people rely on me for. I resolved to write to my new GP to thank him for his prompt assessment and action; I wondered how many times do we take the time out to thank our Doctors for what they do for us?
I’m thinking a lot about our oldest son who at 35 years of age, was diagnosed with Bowel Cancer last year. He now has a good prognosis, but he has been on a journey and a half; perspective is everything!
I realise that this is a personal experience, but it is also a consumer experience; an experience of a health service, a service that we invest a lot of cash into and extract benefit from; the day job is never far away!
Ground-Zero Day +2:
The days that followed seemed like the days before ‘Ground-Zero Day’, but were peppered with private tearful moments. We went out, drank coffee, spoke to family; I carried on writing and researching on Consumer matters and speaking with my colleagues around Europe and the United States.
This week proved to be a non-event, despite the fact that I was fastidiously checking my urine for those tell-tale signs of blood, all to no avail.
The following Monday, exactly one week from my examination, I attended hospital for my pre-op examination. Blood pressure, blood tests, urine tests and a full medical history were taken. The atmosphere was friendly and business-like, with the nurse buzzing around and intervening with the next examination.
When the young doctor spoke about what had been found, I found that I was able to question him objectively about what I was going to undergo. Understandably, he did not know what the state of the ‘thing’ was inside of me and so he spoke of statistics and how they were on my side, but then he also spoke of the possibility of palliative care. He repeated the word several times. The word ‘palliative’ broke me. Before I knew it, tears were trickling down my face; I found that I was unable to engage and so it fell to my wife to speak for me.
Again, humanity was present in the room. The Doctor placed a reassuring hand on me and I found my self apologising over and over again. When the Doctor left the room, the nurse brought me back down to earth, describing her experience of patients like me and how she has seen some of those patients over many years. We spoke about our forthcoming holiday to Cuba and whether to elect for surgery before or after; my greatest fear was that if I left it until after the holiday, I would find that this ‘thing’ had manifested itself into gigantic proportions - no amount of logic in my head could persuade me otherwise.
An appointment was made for my surgery with her favourite surgeon for the Friday of that week; there was no time to waste - I wanted this out; holiday or no holiday!
As I left the pre-op assessment unit, I felt completely overwhelmed. I found myself walking back to our car talking as if this was end of days; I was desolate. However, I didn’t reckon, in fact I should have reckoned on my wife - oh boy, did I get a bollicking, laced with love and tenderness. It was the antidote I needed.
The following days saw my mind turning to the day job but also trying to deal with the forthcoming Cuba holiday. How many times had I guided holidaymakers about their holidays, medical conditions and the need to get insurance; far too many?
I set about seeking help from my own insurer only to be told after 3 days that because the condition was undiagnosed, they would not cover the condition. I then sought assistance from another insurer, who after taking me through a torturous process decided firstly that there would be no cover for my forthcoming ‘Trans-Urethral Re-section of a Bladder Tumour’ or indeed any after-effects and secondly, as the matter was undiagnosed, no cover would be provided. I confess I found this process to be entirely frustrating, particularly as their own website offered some hope by inviting those with ‘undiagnosed’ conditions to call them to determine how they could best help!
I turned to another insurer and decided a different track. Before I allowed myself to be drawn into a lengthy question-process, I simply stated that at this stage I simply wanted guidance. Fortunately the person I was speaking to allowed me to tell him the facts of my situation. I was impressed with his response. He explained to me that trying to insure now, at this moment, a condition that includes a yet to be carried out procedure would be impossible, simply because the risk is unknown. That situation however was to be compared with a period after the surgery, when recovery is clearer. On the question of the undiagnosed condition, he explained that despite the likelihood that we could ‘guess’ what it is, no insurer would insure an undiagnosed condition - that condition should have a name, even if it is only a holding name. He advised me how to approach my conundrum on travel insurance and I will follow his guidance to the letter!
These days saw me feeling much more positive about what lay before me, there was however a growing fear within me that they were going to find something else during the operation. Again this roller-coaster was running away with itself and required my having to pull myself back to reality.
On the question of reality, I had decided that the time was right to tell our children, but my ever-present advisor ensured that I kept to the facts and not allow emotion to overcome my revelation. I succeeded! Whilst there was some concern it was clear, that revelation is all about the delivery!
The day before my surgery, I had prepared well, according to my instructions. I received a call to advise me to come in a half an hour earlier, then later I was told the operation had been cancelled! I was also told that as I was going to be detained overnight, no beds were available. I spoke with the nurses from my pre-op assessment unit and they concluded that I did not need to be detained overnight and that I should be classified, again, as a day case patient. They confirmed that I should present myself the next morning at 8am for my surgery.
That night, I went to bed early and slept soundly until my alarm rang.
Friday 15 March; D-Day had arrived! I got up early, watching the light grow in the east; a new day was beginning. Light was beginning to cascade through the trees on the hill at the back of our house. Birds were frolicking around the bird-table. I could see deer strolling through the forest.
I had packed the night before and laid out my loose-fitting clothes. In no time I was ready and we drove away from the house. I felt calm, relaxed and determined to see this ‘thing’ out of me. 30 minutes later we arrived at the hospital and quickly found our way to the day case surgery unit. I was logged in at the reception; there was some talk about trying to secure a bed for me if they needed to keep me in, but in no time, my name was called and I gave my wife a hug and a kiss and told her how much I loved her. I could not help but wonder how she was coping with this, particularly after the various family health crisis in recent months/years?
I was shown to my ‘patient-area’ which had a trolley-bed, a standard hospital bed-side table and the standard bed-side patient chair.
I placed my bags on the bed and sat on the chair. I could see other people had arrived; all of us anxiously waiting and contemplating what the next few hours would bring.
I was not left for long, the activity of the ward began, blood-pressure, pulse, details, wrist-bands, more details, checking when I last ate and drank. In the intimacy of the ward you cannot but help overhear other patient’s responses. Some had had late snacks, some had drank alcohol, nurses questioned why some beds were empty, concluding that these were ‘no-shows’ or late cancellations. I wondered how could people just not show up for such important procedures, but then I understood; fear and a fear of actually asking questions or seeking that reassurance - it may seem irrational, but it’s human and we are all not the same.
My surgeon arrived and talked about the procedure; it all seemed routine. I asked him about the ‘thing’ - I hadn’t been given a name to describe what I had in my bladder; was there a name? Without hesitation he stated, “Oh yes, you have a suspected bladder cancer”. He explained that he would have a clearer idea when he went in and it could only be confirmed through histology, but he would determine what was there and if he considered it was cancerous he may decide to provide me with a short burst of Chemotherapy, Mitomycin. He was so calm and I found having a name for the ‘thing’ surprisingly reassuring
After a while I was joined by the anaesthetist, who went through the usual checks and checking on whether I had ever smoked (I have never even tried), my alcohol consumption (I don’t drink very often); I seemed to be ticking the boxes. I was then told that I would be given General Anaesthetic; I didn’t mind, I just wanted this out.
Patients had started to be wheeled out and before long the nurses came and asked me to change into my theatre gowns. I was then joined by a theatre nurse who checked my details, got me onto the bed and wheeled me towards the theatre. Once inside, I saw the flurry of gowned theatre staff passing between rooms. The nurse who had collected me checked on me, asking me how I was; I felt anxious.
I was then joined by the anaesthetist who again checked my details and wheeled me to a small room. More checks and the insertion of a line into the back of my hand, oxygen, his reassuring voice, the insertion of anaesthetic, asking me to think nice thoughts - I saw France and my wife. I did wonder if I would ever ‘fall asleep’ but before long, my head started to feel fuzzy, a pleasant tiredness began to overcome me and I fell asleep.
I heard someone calling my name; ‘are you ok?’. I woke up smiling and said, ‘hello there’. I felt no pain, no discomfort, I had a sensation in the lower half of my body which was explained as the catheter they inserted. It might seem strange but we had great ‘craic’. There were 3 staff and myself, joking, laughing, talking politics, the Irish, brexit, hopes, fears, the NHS. In between time, another nurse came along and attached my catheter to a bag to allow the flow of Chemo she explained, to come out of my bladder as it had been in the bladder for an hour. I realised that my surgeon had either made a decision about my suspected bladder cancer or, he was just being cautious. I watched as the purple coloured Chemo flowed into the bag.
As much as I didn’t want to leave my new friends, I was wheeled back to the Day Ward and placed into my own area. More checks and being given water to drink - like nectar! I was then offered a sandwich but eating it was like eating cardboard; I found myself drinking jugs of water in quick succession. The highlight of my recovery was being given custard cream biscuits - several times - did they taste good; a welcome friend; my comfort blanket.
I dozed, surfed the net, messaged my wife and then my surgeon arrived. He explained that the growth was very small - tiny. He said that he decided to give me Chemo and that if it was cancer then it was low grade; he seemed certain about what he was looking at - I felt that was OK. He assured me that everything else in the bladder was good; no further issues there. He would see me in 3 weeks when the results for histology came back; I would have a 3 month examination to check if everything was OK; if everything was OK I would have another check at 12 months and if everything was still OK, I would be discharged. We spoke about our Cuban holiday and suggested that I should decide some 7 - 10 days after the operation; if there were no problems, he could not see any reason why I should not go. We shook hands warmly; I thanked him for helping me.
You always know when a fellow human being is on a mission. A nurse arrived talking about the removal of the catheter. Out it came with a flash; ‘Owww - Jesus’; ‘there its out’, she said!.
After 2 litres of water, the urge to go to the toilet was strong. They warned me it would be bloody, they were right, but with a small flow. I was reassured and realised that every 20 minutes or so I had to go to the toilet; I worked out I could control the flow by sitting down.
In between these toilet visits, I got dressed into my loose clothing and as I was the last one on the ward, I sat with my nursing companions. Again great ‘craic’, hearing about their lives, their pressures, peppered with my toilet visits. Custard creams flowed; I even had a pack to bring home with me; I was seven years old again.
My wife arrived and we left the staff and hospital behind with me having to stop at Sainsburys for the toilet. I got home and dozed, only woken up by the urge to go. Sleep was a welcome friend and before long I was woken by my wife to go to bed.
As I started to fall asleep, I had a quiet satisfaction that my suspected bladder cancer was out, now being held in custody for its hearing before the Court of Histology; I closed my eyes happy.
The immediate days that followed were interesting to say the least. I kept to my regime of plenty of liquids, averaging 2.5 to 3 litres per day. I was also sleeping a great deal and found myself being driven like royalty around the town and countryside.
My routine was peppered with with very regular visits to the toilet and here is where it became interesting. The days that followed revealed two things; blood and pain. Blood was being delivered through my urine and varied in intensity and colour, but this gradually became lighter pink in colour as the first week went by. The pain was something else; it was the pain of cystitis. This reminded me of the conversation my wife and the discharge nurse had with me about how I was going to understand the normal world for many women. Well they were right on that score; the pain in my urethra was excruciating; I had to find a way to resolve it. Then it came to me; ‘Call the Midwife’ - if they can control pain through breathing then I could certainly manage that.
I embarked on breathing deeply and then pursing my lips to a funnel shape and forcing the air out; I did this repeatedly whilst finding and concentrating on a spot on the floor. Occasionally my wife would ask me if I was OK, to which I would shout back, ‘Just managing childbirth!’. Flow was difficult at first but as the days went by it gradually increased and so did the pain, but after 6 days it seemed to disappear. However, it was replaced by my discharging ‘bits’ or ‘chunks’ of what was the scabbing. It was slightly disconcerting at first but also reassuring that everything they told me would happen did indeed happen, except for one thing!
I know some eyebrows will raise when I talk about this, perhaps even one or two ‘Ooeer’s’!
Towards the end of that first week, as I was sat on the throne passing urine, I passed wind, through my urethra; that’s right, through my urethra! The first day caught me by surprise, the second day I thought I’d better talk to someone. I called the urology/oncology nurses at the hospital and they had never heard of this but decided to pass me onto my first urology/oncology nurse. I explained the problem. She had heard of this ‘event’ but thought it better to speak directly with my Surgeon; we both thought it might be trapped air. The Surgeon came back and confirmed that whilst it was unusual, air would be introduced into the bladder when they were placing their instruments inside; the problem was solved and in fact I didn’t have that experience again.
Around this time I decided to share with my family what had happened. It’s all about how you deliver the message. Those who received the information by e mail were back within minutes with great love and affection; those I saw face-to-face, initially you could see the blood drain away from their faces, but with me standing there smiling at them, there wasn’t much opportunity for maudlin.
We had to turn to the holiday which by now was just over a week away.
I confess I was nervous; nervous about complications and the problem of trying to sort out the Travel Insurance. We had a choice: we knew that we would get our money back if we cancelled, but we talked about delaying the holiday. There was only one way to resolve matters, so we took a trip to see our Travel Agent.
We explained the problem and what we were trying to do; they couldn’t be more helpful. At one stage the Manageress joined us whilst they navigated their way through the different booking systems of the tour operator. At one stage the Manageress looked at me and told me that she thought I looked very well for someone who’d had an operation. I explained that I had been a day case surgery; I smiled because I could hear our oldest son, receiving treatment for bowel cancer saying, “if one more person tells me how well I look, I’ll kill them!” Such is his frustration about how other people think he looks, he told me that some people no longer spoke to him normally - he craved a return to normal life; I guessed I might experience the same.
The holiday was changed and we had to pay a modest amount for later date flights but now had something to look forward to.
Whilst all of this was going on, normal life was continuing; e mails, calls, radio interviews & campaigning issues were all coming at me even though all I wanted to do was sleep, pee and think about the meaning of life! But there was something becoming more pressing; my attendance and presentations in Cologne on work on a European Standard on Aircraft Cabin Air Quality. I couldn’t put it off any longer as I was literally days away from the conference, so I spoke with my close colleagues to determine how they could fill the gap if I felt I couldn’t attend. I have to say my colleagues were brilliant and made every attempt to pick up the gauntlet whilst offering me advices about health first.
I had to make a decision about travelling. My arrangements were already made and I was travelling to an EU country and I would only be out of the UK for 48hrs. It was difficult. It was clear that it would take me some time to make arrangements with a Travel Insurer and I probably would get the answer until I would have been there! Despite all the advices I give out, I felt conflicted between those advices and what I considered to be my duty to help deliver on this important work. I thought hard about the situation; I had an EHIC card; I could afford to pay for any shortfall; I could always take a quick flight back to the UK if any medical condition wasn’t too serious; it felt like a plan, but I had to be sure healthwise.
I began to work out different scenarios of what I needed to do if I became ill, making sure that some of those around me understood my situation and understanding how I could quickly get back to the UK if I could or needed to. I was also feeling better and had begun to drive, with 48 hours to go, I decided to go.
The day of travel I checked and double-checked that I had everything with me, including that all important EHIC card and that my contingency plans were well rehearsed. I gave myself plenty of time and the journey to Dusseldorf and the train to Cologne was uneventful. When I got to Cologne I met up with a colleague and we talked about the days ahead and about our lives; I felt that I had rejoined the normal world again!
The next morning I experienced a greater blood show than I had for the previous days and this continued throughout the next few days. The meeting proved to be challenging and it was a great relief to be back on the treadmill, arguing, debating, facilitating, mediating - it felt great. The evenings out were good but I found that I tired quickly and so left my colleagues earlier than I normally would. Other than tiredness and the show of blood, I felt OK and concentrated on what I needed to do. The return journey was again uneventful and I got home all safe and sound and reenergised after my encounter in Cologne; I really appreciated being back on the ‘Planet Normal’!
‘Planet Normal’ however saw me being really exhausted and sleeping for up to 12 hours for several days and dozing in the sunshine in the garden outside.
The next morning I was back on the hospital treadmill, following the instructions on drinking and eating because I had to have a CT scan with a contrast to examine my kidney stones and the urinary tract. This had been arranged during the early stages of my consultations and treatment. The instructions required me to drink plenty but in particular, one pint of water an hour before my appointment, and, I was not to go to the toilet.
I arrived at the hospital and checked in for my appointment, there were only a few people there but a number of people were being wheeled in/out on trolleys obviously coming up from A&E. We went past my appointment time and I was beginning to become desperate for the toilet. It got so bad that I could not sit comfortably and was concerned about having an accident; I decided to speak to one of the staff and explained that I had followed the instructions but I had been instructed also to drink plenty after surgery. The clerk went away to speak to the staff and came back and told me that they needed an empty bladder to do the scan and that I could go to the toilet!! I could go into a lengthy description of how good it was to go to the toilet, but I won’t, but I was there for a long time!
I wasn’t long back from the toilet when I was called through and was pre-checked and had a canula inserted into my arm; its surprising how quickly you get used to having needles stuck into you; I found it fascinating watching the art of needle insertion (I know, not everyone’s cup of tea and as my son tells me, you soon lose the fascination!).
I was then taken into the scanning room and placed into the centre of the donut. A test was carried out and then I was attached to the contrast (radioactive fluid). I was warned about its affects and within a couple of minutes the back of my throat felt hot; I then had to walk around the scanning room for about 10 minutes, after which I was placed back onto the bed and re-attached to receive some more contrast; this time I felt it in my throat and in my bladder but the sensation disappeared after a few seconds. Instructed where to place my arms, breath-in, hold, breath-out and within a few minutes it was all over. My radiographer was from Australia and we spoke about where she came from whilst she removed the canula and held my arm for a couple of minutes to stop the flow of blood. With that, I was on my way.
I found my wife asleep in a chair in the waiting room. I woke her and we visited the appointments/out patients desk to see if I could find out the dates of all my forthcoming appointments, so that I could ensure that they didn't clash with my new holiday dates (I have also been invited to speak at a conference in Norway in June). The staff were puzzled because they could not find any appointments for me. They thought it was strange but they gave me a number to call or the option to speak to my surgeons secretary.
We then travelled home because tonight was date-night; we were going to see The Furey’s in concert.
The concert was great; great humour and craic - they sang some sad and melancholy songs. I found myself reflecting with just a small tear in the corner of my eye.
The next morning we had a great deal to do; just the normal domestic Saturday morning.
Before we drove off I went to the post box and picked up our letters. I could see that there was one from the hospital.
I got into the car and opened it up and could not believe what I was reading. After all the examinations, operation, actually seeing a growth in my bladder, having many conversations about the 'tumour' and being given Chemotherapy, histology had found that what they had removed was not cancerous. I could not believe what I was reading, even the Surgeon’s letter had a tone of surprise; it was simply inflammation! I was so shocked and taken aback I didn’t know what to say. I read it again. I read it aloud. I asked my wife to read it. I remember sitting there in the car, smiling. I actually didn’t know what to think.
The rest of the morning felt like I was in another world; I just couldn’t get the last few weeks out of my head, all the tears, the quiet moments, the conversations, the medical treatment - I was happy but numb - I had other emotions but I don't want to put those down on paper.
I have existed in this world for several days, breaking the good news to family and friends, receiving their wonderful good wishes and taking their advices that for the present I should slow down; I feel I am returning to real life.
I am lucky; I’ve only had a small window into the terror of a serious illness - I can only begin to imagine what it is like for our son and other people.
I've been discharged back into the care of my GP, but right now, at this moment, I celebrate how lucky I am on so many different levels.
It has taught me a great deal about personal strength, resilience and the beauty that surrounds us and why it is worth fighting for the things that are important to us!