Me and My Radical Prostatectomy
NOTE: This page is intended for the use of individuals who are either going through or about to go through the process of a Radical Prostatectomy, or for their friends and family to gauge what might be happening. If you are interested in my work as an author, copy-editor or cartographer, then please be aware that some of the information may make uncomfortable reading.
Furthermore, it is highly personal and the sole intention here is to provide my own take on what has happened to me since my diagnosis with Prostate Cancer in December 2013. In addition, it only highlights my own experiences, and those of others will almost certainly be very different. If, however, the information contained is of use to a single individual I will consider it to have been a success. Should any of this information prove to be in any way helpful, it may be worthwhile returning to this page as I may update it as new information/experiences arise. There is one caveat: although I personally couldn’t care less about discussing my sex life, I do not wish to place Jo in an embarrassing position and so this is the one subject connected with a Radical Prostatectomy that I will not be describing or discussing. Sorry.
Read on at your peril!
It is only fair to start near to the beginning – but not at the beginning, as that would involve my whole life story. I was first sent for a PSA (Prostate Specific Antigen) test in 2011. It was found to be high and it was agreed with the hospital that the situation would be monitored at 6-monthly intervals, but that when a specific mark was reached I would go for a Prostate Biopsy. Accordingly, when the PSA test reached that level, in September 2013, I went for a Biopsy at Barnsley General Hospital.
Needless to say, I read a lot of information concerning the biopsy procedure and was more than a little worried, since the words ‘pain’ and ‘bleeding’ were very much to the fore in associated literature. It was with some relief that I found the process uncomfortable, but in no way painful. Sadly, despite the knowledge of what would happen, nothing had really prepared me for the mental shock of actually peeing blood, a phenomenon that lasted for four-five days after the biopsy. This was to be my first experience of the many mental shocks that would come in the near future!
Sadly, in December 2013 the hospital contacted me with the news that one of the test cores had come back positive. Although the Gleason Score (a system used by cancer specialists to determine whether a tumour is ‘benign’ or ‘aggressive’) came back reassuringly low, it was accompanied by the news that the Urologist believed that she (yes, it was a woman!) felt that she had missed the centre of the tumour and that the main body could easily be of the aggressive type.
In order to gain a clearer picture, in December 2013 I returned to the hospital for a ‘Bone Scan’ (to determine whether the cancer had spread to the surrounding bones) and an MRI scan (to check the surrounding soft tissue for signs of cancer). The results were delayed because of the Christmas holidays, so it was in January 2014 that I was informed of both good and bad news. The good news was that the scans had revealed no signs of cancer anywhere but in my prostate. The bad news was that there was a tumour approximately 1cm long in the prostate itself.
Although heartened by the news that my life didn’t appear to be at risk yet, appointments with my Urologist confirmed both that I was very young for this to have happened, but also that the hospital could not guarantee that the tumour was of the ‘slow-growing’ variety. If it was the aggressive variant, the length of time between identification and it spreading beyond the prostate was unknown.
I had four choices of treatment:
1) Watch and Wait: Simply keep an eye on the tumour by continuous PSA tests, a method not recommended due to my youth and the lack of information concerning the nature of the tumour
2) Chemotherapy: Not recommended due to the fact that I had a young son to look after and the treatment would make me feel ill and probably leave me unable to care for Owen
3) Radiotherapy: Again, it would leave me feeling ill, but this was also not recommended for two further side effects. One is that although it destroys the cancer, there remains the possibility that after several years/decades the cancer could return. The second is that there is a slight chance that the radiation can cause ‘secondary’ tumours: i.e. after two or three decades the radiation itself can cause cancer
4) Prostatectomy: removal of the entire prostate and associated glands etc.
After very brief deliberation (less than a minute!) we decided that the first three would be unsuitable due to looking after Owen and my young age. (Don’t laugh: I was constantly being told that I was ‘young’!) Should the cancer return or be augmented by radiotherapy, I would have to undergo many further treatments, by which point my age might make me an unsuitable candidate for surgery.
Having made my choice, I was referred to Sheffield Hallamshire Hospital for the actual treatment. This is where the story really begins.
On the day prior to my appointment I had two medical actions to undertake. The first was to inject myself in the stomach with a mild anti-coagulant so that my blood wouldn’t start to clot during the operation. Despite my horror at finding this out, the actual injection was actually a bit of an anti-climax. Gathering all of my willpower, I finally managed to insert the needle, only to find that there was no pain, just a bit of discomfort after the contents were in. The second was that I had to give myself a suppository before going to bed. Again, the act was less uncomfortable than the end result: I spent quite a time on the toilet, wondering what the hell had hit me! I am not used to that feeling and don’t want it again, thank you very much!
Strangely, I wasn’t nervous about going in to hospital at all. Maybe this was because the last time I had ‘surgery’ I was 6 years old and had a tonsillectomy: I have no recollection of the experience at all. Thanks to a friend who actually works in the hospital, I managed to cadge a lift (thank you Alison and Richard!), so the stress of having to travel to the hospital was removed. Once there, and after being asked the obligatory questions (name, age, date of birth, can we check your hospital wrist bracelet etc) at least five times, I was finally walked to the anaesthesia room. Here, I had a cannula inserted (which was painless!) and was then told to “breath deep of this good Yorkshire air” by the two Yorkshire nurses. Needless to say, the “Yorkshire air” knocked me out.
Oh Dear …
The day didn’t go entirely as planned. The prostatectomy operation was supposed to last between 2 and 4 hours, but after 8 hours I was still not on the ward where Jo could reach me. Needless to say, she was extremely unhappy on Friday evening! There appear to have been two main problems with the surgery.
One of these was that once the robot (and the surgeon!) had begun its work, everywhere it touched me internally began to bleed. (Yes, I know: I’m usually grumpy and now I bleed a lot, so I’m a miserable little bleeder!) The end result was that I was fitted with a ‘drain’: a tube was inserted into my side, going deep into my abdomen, from where it drained blood etc. into a small bag that could be emptied when the need arose.
The second one is what affected me the most in the first hours after surgery. One of the questions asked earlier was whether I had ever had a strong reaction to the anaesthetic. Obviously, I didn’t know but suspected that, with my luck, I would have.
I was right: my next series of disjointed memories are of violent, prolonged projectile vomiting. How long this lasted I do not know. My first distinct memory is of asking for my glasses (spectacles, not beer!), with a few seconds’ delay until the two nurses on duty found them on my little ‘table’. What is memorable about the event is that one of the nurses, called Grace, then asked where her patient had gone because I “looked so different in glasses”.
For some reason my memory shot back to University. When I first had to wear glasses I wore them in a seminar with two lecturers, Louis Rawlings and one Adrian Goldsworthy. When I put them on for the first time during the seminar, as at that time I only needed them for reading, Adrian said that I “actually look intelligent with glasses”. (Cheek!)
Recalling the incident, I said to Grace, “What, you mean I now look intelligent?”, to which she replied, “Yes, that’s it, you look intelligent with glasses on” before starting to laugh. That was the point at which my recovery started, as she reawakened my sense of humour – which unsurprisingly had become lost during surgery and prolonged vomiting. Thank you Grace!
It was the internal bleeding after the prostatectomy that was to be the determining aspect of the length of my hospital stay, although I didn’t realise this until three days after the operation. Internal bleeding is one of the many major worries faced by surgeons when they do an op. After my surgery, this was even more the case as they knew I was bleeding from several sites. As a result, I was kept in hospital over the weekend (I was originally due to have the surgery on Friday and be released on Saturday evening). When I finally recovered all of my senses I had a nauseous sensation due to a feeling of ‘invasive pressure’ all along the bottom of my ribcage.
When the doctor saw me on Saturday morning he explained that I was being kept in and also that the tube coming out of my right side was a ‘drain’, its purpose being to not only drain all of the blood out of my abdomen, but also to monitor how much bleeding was occurring and help to decide when I would be allowed home. I only felt the full effect of the drain being in place when on Monday morning the doctor announced that the bleeding had stopped and not only would I be allowed home, but all of the cannulas and the drain were to be taken out.
Obviously, the removal of the cannulas was straightforward and it was a relief to be able to move my arms without the worry of catching the cannulas on my bedding or clothing. Of more import, however, was the removal of the drain. The nurse who did it, called Chinwe, was careful, but the sickening feeling of a large piece of plastic sliding around inside my guts was eye-squeezingly bad. On the other hand, once it was out I suddenly realised just how bad it had made me feel, and for the next ten minutes I told everybody how good it felt to be rid of the thing – so much so that no doubt the other patients quickly became fed up of the tale!
Yet no matter how bad the drain felt, its place as the worst feeling was beaten by two others. One was obviously the pain and discomfort of the incisions themselves. The other was every man’s eye-watering worry: the catheter.
There is no getting away from it: having a tube shoved where no tube should ever be shoved is wrong. It is not painful – except in special circumstances (see later) – but it is irritating, uncomfortable, and a pain in the …
As soon as I had recovered from the vomiting on Saturday a nurse by the name of Paul took over. He was polite but insistent that I should walk as soon as possible, as this would help my recovery by stimulating blood flow, ensuring that I became mobile as quickly as possible, and it would also encourage deep breathing, as one of the major ailments brought on by surgery is chest infection brought about by remaining in bed and only doing shallow breathing. I must say that it is not fun to be made to walk when your incisions hurt, and the act of walking is very slow due to both the pain and the necessity of carrying a urine bag (attached to the catheter) in one hand and the bag at the end of the drain in the other. I must have looked like a ninety-year-old man with bladder problems, desperate to go to the toilet but hindered by poor circulation in his legs. It took me over two minutes to walk about fifty paces – if that distance. However, in one respect Paul was correct. Once I got into the habit of walking it was a hard habit to break and on that first Saturday he was probably put out by my asking him when we were walking again (I needed a chaperone on the first day!) rather than him fitting me in to his busy schedule. Sorry Paul.
The Last Day in Hospital
Thankfully, on Monday morning I was told I would be released and all of the tubes and needles were finally removed – with the obvious exception. I then had to wait for the hospital pharmacy to provide the medication I would need to take home for the after-care.
Well before the appointed time this arrived and the nurse went through what I needed to do: antibiotics for a week; surgical stockings (the white ones that reach the knee and have a hole under the foot) for six weeks(!); spare urine bags and leg straps for the catheter; and lastly, but no means least, 26 hypodermic syringes that were to be self administered into the stomach, once a day at around 6pm.
To say that I was dischuffed* is an understatement. The thought of sticking a needle into a stomach already mangled by surgery was not appealing. But, as many others have found before, I had little choice and there was nothing to do but get on with it. At least I was now going home and, thankfully, everything was timed perfectly so that Alison and Richard could give me a lift home again after Alison had finished work. Once more, many, many thanks!
(For those who don’t know, in the UK it is illegal to drive with a catheter as – obviously – it can affect your driving, but it also means that even a minor bump can end with the catheter being pushed into your body, damaging your bladder and so requiring further hospital attention. Not a good idea. So I didn’t drive!)
I was given a week-long course of antibiotics by the hospital, but, typical of my luck, developed both an eye infection and phlebitis in this period, neither of which was affected by the antibiotics I was taking! Instead, I had to go to my local doctor and be prescribed different antibiotics for these two infections.
The eye infection was just a case of bad luck with the timing, but the phlebitis was something else. I had cannulas in both my left and right hand and over the course of the weekend in hospital both eventually failed, with the antibiotics and other medicines being injected through them simply flowing back over my hand and onto the floor. On Sunday night they ended by removing both and inserting a new one on the inside of my right elbow. Needless to say, the first of the ‘failed’ cannulas (the one on my left hand) was the source of the phlebitis, where an infection set into the vein, making it swell, in the process becoming hard and painful. Typing this I still have the last ‘lump’ in my left hand (near the wrist), but at least it is no longer painful. Hopefully the cream I am using will outlast the phlebitis!
Getting the Needle
To put it mildly, I was not happy about having to give myself an injection every day after the Prostatectomy. Although I knew that if I had difficulty a District Nurse could come to the house to do it for me, my pride would not allow this to happen. Thankfully, after only a couple of days (OK, a week!) I realised that there was a method to this.
One: pinch a fold of stomach skin. Two: insert needle gently. Four: push plunger. Five: Withdraw needle. End of problem! Well, no, because sometimes it hurt to stick the needle in! (Yes, I know … )
The more observant will have noticed that I missed out number Three in the above list. This is ‘The Method’!
Three: if needle insertion is almost completely painless, go to step four. If needle insertion quickly becomes painful, stop. Move needle about 5-10 millimetres away from this spot and repeat stage two. Using this method I stopped the injection hurting and I breathed a huge sigh of relief. Having said that, it was still fairly nerve-wracking and Jo always left the room as fast as she could when I reached for the needle boxes!
As noted earlier, the nurses at the hospital all emphasised the need to walk regularly in order to aid healing and avoid new infections. (But not of the eye or hand! Sorry I’ll stop now.) What they didn’t do is tell me of a slight problem that might occur when walking.
The first I knew of this was when I began my walk on the third morning of being at home. To say that the catheter was causing me problems is the understatement of the year. It was painful, uncomfortable, and downright awkward to walk. Returning home I checked the bag on my leg, but it was still in place. Only at that point did I notice that the thigh strap that held the catheter stationary as it entered had lost its grip on the catheter and the whole tube was swaying in the breeze. The tube is held in place by a small rubber ‘strap’ that goes round the tube and is attached back onto the thigh strap by Velcro. Unfortunately, this had come loose and it was the added weight and constant movement of the tube that was the cause of the discomfort. (See the picture – although I should point out that it is not my leg!)
After a quick assessment I realised that I could tighten this without any problem and the crisis was over. However, as time passed friction caused the small rubber strap to lose some of its grip and the catheter itself to become smoother. Towards the end of the fortnight I was constantly checking and adjusting the strap for maximum security and comfort!
Removing the Catheter
After two weeks of taking tablets, injecting myself, going for walks with a urine bag strapped to my leg, and generally getting more and more fed up, I returned to the hospital for the removal of the catheter. This was my big moment!
I was first sent to radiology, where they used the catheter to fill my bladder with a solution that was visible to x-rays. At this point several x-rays were taken from different angles (the x-ray machine moved, I just had to lay still!) in order to show both that my bladder was filling properly and that the new connection between the urethra and the bladder had healed properly and was not leaking! This was my major worry. Any problem now would result in the catheter being left in for longer.
Thankfully, the results were positive and the nurse finally began the process of removing the catheter. Including the time taken to lie on the bed and expose the offending article (the catheter – keep your minds out of the gutter!) the whole process lasted less than one minute. I expected the catheter removal to be painful and uncomfortable. Thankfully, I was wrong: there was no pain at all – thank you to nurse Bev! On the other hand, it must rank as the most uncomfortable and odd process I have ever been involved with – although the actual removal must have lasted for less than two seconds. The only word I can use to describe it is: “Bleurghh”!
Having said that, the relief of finally having it removed outweighed all negative feelings and from then I was walking with a smile on my face!
Before I was allowed to leave hospital I had to drink enough water to use the toilet three times. Each time a record was made of how much I had produced (yes, I had to pee into a measuring jug!) and then have a ‘cystogram’ (as they called it). This is not a full-blown cystogram, with stuff inserted, more like a pregnancy scan, where a machine covered in gloop is rubbed around your stomach to takes pictures to ensure that your bladder is emptying properly. Only then are you allowed home.
However, I drank a little too much! I took a taxi to Sheffield train station, then caught a train to a station near my home. By the time I reached the last stop I was in severe discomfort and only just managed to reach a friendly toilet stop (thank you, Station House in Thurnscoe!), where the sigh of relief was probably heard for miles. My advice – don’t overdo it on the water in the hospital!! Talking of which …
Taking the …
Before going in to hospital I was advised to begin ‘Pelvic Floor’ exercises. Although I was under the impression that these were mainly for pregnant women, I agreed to what the doctor had asked. I am now grateful that I did. One of the main side effects of having a prostatectomy is that it affects your urinary capabilities. I think a diagram is in order.
On the diagram I will draw your attention to two sphincters. The ‘External Urethral Sphincter’ is classed as ‘skeletal’ muscle and like the muscles in your arms and legs is under voluntary control: i.e., you have to concentrate to make it work. It is controlled at the same time as you work your Pelvic Floor and you can use it at any time to stop urinating half way through. This is the muscle that the doctors were telling me to strengthen for after the operation, as it is part of the ‘Pelvic Floor’ group of muscles. There is good reason for this.
The ‘Internal Urethral Sphincter’ is different, in that it is ‘smooth’ muscle and is under involuntary or autonomic control, like the muscles that control your breathing or your heart: you don’t need to remember to breathe – except when watching a horror film or similar. In other words, after potty training we go through our lives not needing to concentrate in order to avoid wetting ourselves.
Guess what? You’ve got it: the operation to remove the Prostate also removes the Internal Sphincter and the Pelvic Floor exercises are to enable the External Sphincter to do the work of both. And to stop you peeing yourself at any time.
There are, however, problems. One of these is that the muscles which work the External Urethral Sphincter also work the Anal Sphincter. This means that any time you want to release ‘excess gas’ there is a good chance of wetting yourself.
Another is that the External Sphincter is not autonomic, so in effect you have to potty train yourself again.
Yet another is that when you cough, sneeze, laugh, or do anything that can lead to what is known as ‘Stress Incontinence’, there is a good chance of a leak.
All of this would be fine as a week or two’s training slowly allows the sphincter to learn its new job. Where I find I am getting a problem is that, in my case at least, the Internal Sphincter was an integral part of the bladder control system telling me when my bladder was full. Its removal means that I am also having to relearn the signs of having a full bladder. Unfortunately, my incisions are quite high and the instruments used for the operation had to be pushed past my intestines, stomach and bladder to reach the prostate. This irritated my entire bowel region and meant that for the first two weeks after the removal of the catheter I could not read the signs properly. The way I knew that my bladder was full was that I suddenly had a minor leak for no known reason.
(Please remember at this point that the reason for this page is not to titivate those of a sick disposition but for me to describe my symptoms etc. for anybody else who is wondering either what will happen to them after the operation, or to find out if others are suffering the same effects.)
Thankfully, I have now had the catheter out for three weeks (as I sit typing this) and my recognition of the symptoms has improved tremendously. Sadly, though, my brain still thinks it has all of the necessary muscles intact and I have had some near disasters watching TV and waiting for the ads to come on before going to the toilet.
THE WAITING GAME
Yet even as the effects of the surgery begin to fade and the prospect of a full recovery begins to dawn, my mind turns to the next phase: the follow-up PSA test. Last Thursday, 17 April 2014, I had the necessary blood extracted for the test and now await the result. On Monday 28 April I go to the hospital to find out whether all of the cancer has been removed. I am far more nervous about this than the result which told me I had Cancer. Then, I knew there was a good chance of a bad diagnosis, but I also knew that there were several options for treatment and that, as it had been caught early, the outlook was positive. Now, I have no such luxury. If the test is positive, I have no idea of what will happen. All of the previous tests had shown that there was no sign of cancer anywhere else except in the prostate. If the PSA test is still high, then it is likely that I still have cancer but I do not know where it will be. Only when it is located will the correct treatment be assessed. On the other hand, I need to think positive: I know that there was no cancer anywhere else, I know the prostate has been removed before it spread, and I know I will be OK.
But in the depths of the night doubts can creep in.
Best not to sleep, then!
The Follow Up Test
I have now been to the hospital for the follow up. And have come to the conclusion that some surgeons like to make you wait, just so they can drag out the suspense and have a laugh at your expense! He, Dr/Mr Yates, kept me talking for a good 5 minutes before I put my foot down and demanded to know the result of the latest test. (In retrospect, I think I knew it was good news, otherwise we would have had a completely different tone and conversation!)
I was expecting a score of about 6; I was hoping for a score of 1-2. Imagine my shock and delight when my result came back at 0.007. I think: the number of zeros after the decimal point is not fixed in my head as after he said “0.—” the relief turned my brain off completely!
I now await the next test, in three months time, with the usual mixture of dread and hope.
The Six-Month Test
It is now seven months since the operation and I’ve just had my ‘three-month’ follow-up PSA test. (The Urology Department is being overwhelmed by the sheer volume of work, especially with Prostate Cancer, so I was put to the back of the line as my case has been assessed as low-risk.)
The week between the blood sample being taken and getting the result was unpleasant. As the nervousness increased so a multitude of aches and pains emerged, including aches in my hips and my leg-muscles. Obviously, I knew that these were psychosomatic and merely being created by my worry, but they still helped to increase the tension.
After a long journey to the hospital and a short (!) wait I finally met the surgeon. Without preamble he informed me that there was no trace of PSA and that I would need another test in six months. Almost a year after first being diagnosed – and with the long period of routine PSA tests before that – it appears that I have got the ‘All Clear’ that all cancer patients long for.
And it is true that I longed for this verdict. But now that I have it I’m struggling to cope more than I did when I was first diagnosed. All of my friends and family have supported me throughout this ordeal, and have all expressed their relief and happiness at the latest test result.
My own response is mainly one of disbelief: the fear, and reality, of having cancer has been with me for two or three years now and has dominated my life, especially on those nights when imagination and tiredness have combined in a negative way. After all this time my brain cannot accept that I don’t need to worry any more. As a result, I am now living in a cloud of unreality and feel disconnected from most things around me. (This does not include Jo and Owen!)
In six months I need to have a blood sample taken and then have to wait for a week to get the result. I don’t need more major surgery, or weeks of Chemotherapy and/or Radiotherapy and/or hormone injections to eradicate the last traces of cancer. I don’t need constant, weekly checks to assess the progress of the disease. Instead, I now have six months of freedom, and will finally be able to get my life back on track both work-wise and personally. Yet even as I type this that concept simply will not sink in.
Despite my emotional confusion, there is one thing I can recognise: my indebtedness to a large number of people. There are the large number of people from all over the world who have taken the time to offer their encouragement by email. There are all of my friends in the village and elsewhere who have offered to help in any way that they can and who’s confidence in my ability to overcome cancer still leaves me dumbfounded. The same goes for my family, whose constant encouragement has helped in the darker moments and who also trusted me to win the battle. Obviously they all have a higher opinion of me than I do!
Yet all of their support would have been of little avail without the skill and dedication of the staff at Barnsley General Hospital and Sheffield Hallamshire Hospital. Without their care and dedication I would not be sat here typing this page. At the head of the list must be Dr Kate Linton, whose skill in detecting the cancer meant that it was caught at an early stage, and the surgeon, Mr David Yates, whose skill in removing the cancer has resulted in my current state of complete confusion.
I would like to thank you all for your care, support and help: you’ll never know how much it has helped. Without you, I don’t know where I would be now.
I am aware that for people living in the US or other countries my tale may have little meaning, except for possibly giving hope: after all, the medical system outside the UK is usually completely different and so my experiences in hospital may be deemed as being ‘irrelevant’. For anybody from the US who visits this site, please also try www.still-smiling.com. The author, Patrick Walsh, has been through a similar experience to myself, but in the US. Hopefully this will help.
It is now a full year since my last post. Truth to tell, it feels much longer. The good news is that I’m still plodding along as usual. The bad is that the last seven months has been a very stressful. I think it may help others to explain what has been happening in the hope that, should they go through the same experiences, they have some idea of what to expect.
The problems began six months after my last post. Prior to that post my GP (General Practitioner/Local Doctor) retired and the Practice was taken over by another group. When I went to see the new Doctor I should have seen the warning signs: although my score was 0.01, he informed me that a high PSA test score could mean anything from Cancer to Benign Prostate Hyperplasia. What, even if I didn’t have a prostate? D’oh!!
Anyway, just before Christmas I went to the GP to have blood taken for the PSA test as usual then waited for three days before ringing for the result. Prior to this test my results after the surgery – apart from the first one – had come back as 0.01. Stupidly, I’d let myself become fairly complacent so was expecting the same score again.
I was told that my test result was 0.1. At this point alarm bells rang and I asked to make an appointment with the doctor. The receptionist then stated, “It says here that the doctor needs to see you within four weeks anyway”, so I made an appointment for that morning. Needless to say, I was expecting the worst whilst waiting for the appointment.
When I saw the doctor I asked about the PSA result and she (different doctor to last time) said that the result was excellent, even after I asked about the 0.01 to 0.1 change. I asked about the four-week deadline and she said that this was due to my high cholesterol and blood pressure tablets: the combination of the two meant that I had an extremely high risk of a heart attack. When I pointed out that I’ve never been on blood pressure tablets in my life, she checked, removed the check-box from my record, and stated that I didn’t need to see her after all. Safe to say my confidence in my local GPs has taken quite a dent.
It was in this context that I decided to make the appointment at the hospital for before Christmas, in the belief that things would be cleared up and that I wouldn’t have to spend Christmas worrying about the change in test scores.
What a mistake. I was told by the surgeon that they didn’t know whether the 0.1 was due to a mistaken test at Barnsley General, or whether my score had increased by a factor of 10. If the latter, I would be looking at Radiotherapy and/or Chemotherapy in a very short time. If the former, I could be fine. To decide on what to do, I had to have more blood taken.
That was on 23 December. The results came back on 29 December. Needless to say, that Christmas wasn’t my best. When the score did arrive it was 0.046, but as this was a different machine – calibrated differently and working in a different laboratory – minute human and atmospheric differences could account for the change. I was told by the hospital that if necessary they would contact me about another PSA test.
Thankfully they didn’t, so I waited in hope but also in fear until June before going to the GP to have another blood sample taken. This time I was prepared. I told the nurse what had happened previously and asked if she could put in a request that the sample be treated to the fine test rather than the standard. She stated that there is only one machine at Barnsley General, that she wasn’t allowed to add the request, and that the test would be whatever the hospital decided. Another dent in my confidence in the local GP’s services.
So I waited three days for the result, with my nerves slowly getting worse. On the appointed day I rang for the result and was told it was 0.1 again. I was furious. As the receptionist at the doctor’s surgery couldn’t answer my questions (obviously!), I decided to do some digging. I rang Barnsley General and was given the number of the laboratory. I rang the laboratory and was told that the sample may have been sent to Sheffield Northern General, and that Sheffield Northern did not have the equipment necessary to measure below 0.1, whereas Barnsley General does have.
I then went to the GP Surgery and demanded to see someone. Thankfully I saw Christine, the woman who has done most of my tests up to a year ago. She rang Barnsley General and asked some questions. Turns out that Barnsley no longer test below 0.1. So it wasn’t the GP’s staff, but the hospital’s unannounced change of policy that was at fault. (I’d like to put on record here my gratitude to Christine: she has always helped me whenever possible and has been a constant rock upon which my confusion and fear has broken.)
Armed with my new-found knowledge I arrived at the hospital for my scheduled six-monthly appointment and had a conversation with the surgeon, during which he pointed out that if this was bad news for me, for his newer patients it was worse, as it means a three-monthly journey for Barnsley patients from Barnsley to Sheffield for a blood test that Barnsley General have the equipment to do. Ridiculous!
Anyway, as expected a second test was needed. This has been one of the worst waits of the entire process, from my diagnosis in late 2013 to July 2016. The recently attended appointment was two years after the surgery. In theory, after two years I could be released from the hospital. If the score remained in the same area or lower, I would be released from hospital: thankfully, my surgeon had already stated that after my release a test would not need to be on the fine scale, but a result of 0.1 would be acceptable. I could be tested by Barnsley and not have to make the trek to Sheffield (which loses me a day of work). If, however, my PSA score had risen again – and remember that in the change of test laboratories it had risen from 0.01 to 0.046 – then I could expect more tests and more anxiety.
This morning I was told the result. I am to be released from the hospital and tested by my local GP. No more long trips to Sheffield (hopefully!) No more Jo taking days off work to be with me when she’s needed. I now have to put the cancer out of my mind and try to get on with my life. I am going to treasure those months as much as humanly possible. Who knows, I might even go on holiday to somewhere warm!!
Oh, hold on a minute. I’ve just signed a deal with Pen and Sword for another book! Oh well, back to the grindstone …
On a final note, hopefully I won’t be expanding this page for at least six months, and even then I am hoping that I will only be stating that the latest test has come back with no trace.
Until then, any questions or comments about my experiences can be made and previous comments found *** HERE.*** Please take the time to post. On a personal level, I can’t guarantee an instant response, but I will do my best.