Well, I had not expected to be writing another blog quite so soon. However, as I said last time, it is not possible to predict what lies around the corner. It seems to me that a fair bit has happened recently, although that is my personal view of course, and others might feel that the last few weeks are really no big deal in the great scheme of things. It is somewhat inevitable that my assessment of events is very much coloured by my own perception of my quality of life where I am currently experiencing a significant improvement. This is mainly down to two things, I think. Firstly, some promising results from my new medication, and secondly, a prostrate operation which has proved beneficial.
On the medication front, I have commented previously (see “How was Christmas for you?”) that last year’s excellent treatment with Abiraterone was no longer proving effective and had to cease. I was finding that my enjoyment of life was deteriorating quite rapidly. My oncologist had been attempting to obtain an alternative trial drug for me, but in the meantime he started me on something which has been around for quite a while. This Diethylstilbestrol can increase the chance of blood clots, so given my heart problems it has been sidestepped until now. I am on Warfarin which helps, of course.
Anyway, it has reduced the PSA reading (used to assess the progress of my cancer) quite dramatically, which is good. So for now my consultant is keeping me on this, and would still do so even if he could obtain the alternative trial drug. It also seems to be helping with making me feel brighter: fingers crossed that it will remain beneficial for a good while! A further benefit is that it is something which my GP can prescribe, which means a couple of trips fewer to the hospital every four weeks! That is much appreciated.
As for my prostate, things had been deteriorating quite rapidly with my urination problems. After one particularly bad night, and having gone into an episode of atrial fibrillation, I had to call Shropdoc. That resulted in an unsuccessful attempt by the doctor to catheterise me, with the consequence that I spent Sunday morning at Shrewsbury Hospital. There a catheter was fitted, which provided me with considerable relief.
The next step was to go back to my urologist at New Cross Hospital in Wolverhampton, where he felt that another prostate operation could be helpful. I had been down this road three years before, but this time there seemed to be a longer list of possible negative outcomes. This is one of the consequences of our litigious society, I feel, where people are keen to seize the opportunity to sue if something does not go perfectly. In consequence, the medical team have to point out all the possibilities. However, the key benefit would be that I could be free of my catheter, and that was certainly worth going for.
Although the target waiting time is 4 to 6 weeks, my urologist had to point out that the actual time is nearer 2 to 3 months, partly because of bed shortages. However, he did say that my case would be reasonably prioritised. Sure enough, before the six weeks were up I received a phone call on a Friday asking me if I could attend for a pre-operative assessment on the following Tuesday with a view to operating on the Friday of that week. Naturally I accepted, and turned up at New Cross on the following Tuesday morning.
I reported to the Appleby Suite, which felt spacious and clean. Indeed, the first question was whether I had cleaned and gelled my hands, which was a good start. Having checked in, I went through the usual medical observations. These were fine, with the slight exception of a hint of a urine infection. This meant that I needed to take an antibiotic for the next few days: this necessitated obtaining a prescription from pharmacy. However, one of the hospital volunteers kindly collected this for me to save me struggling along to pharmacy, and so I was able to sit and watch TV as I waited.
I checked in for the operation on Friday morning, and went through some basic checks again, and a visit from the anaesthetist. Then there was time for a chat with one of the hospital chaplains before I was taken down to the theatre. A small needle was all it took to put me to sleep, which is just how I like operations to take place for me! So the next thing I remember is coming round in recovery and chatting to a nurse who kindly brought me a cup of tea as we talked.
Then a nurse came down from the ward to collect me. This involved a shortish journey as I was wheeled along to my resting place for the next 24 hours or so. The nurse was delightful, and helped me to feel really relaxed as I settled in. One of her questions was about what I would like to be called. Thomas is my first name, and appears on all my official documentation and is used on all dealings with airport ticketing and so on. However, I have always been known by my second name, which is Philip. Well, I had tried using this on previous hospital visits with very limited success. Indeed, when my son-in-law has called to take me home, he has experienced blank looks when asking for Philip Moore and has had to revert to asking for Thomas Moore.
Nevertheless, I thought that I would try again, so when the nurse asked me if I would like to be called Thomas or Tom, I replied that I would answer to either, but would prefer to be called Philip. She laughed, and duly recorded ‘Philip’ on the whiteboard above my bed. And it worked! I was known as Philip to everybody. Indeed, when my son-in-law came to take me home the following day, mindful of his previous experiences, he remembered to ask for Thomas Moore. But the desk was busy disclaiming all knowledge of me until the charge nurse said “You must mean Philip!”
In a way, the use of my second name summed up the caring treatment I received during my stay. I was treated as a person with my own needs. My specialist came round later on the day of my operation to report very positively on it. So all went well, meaning that I could be discharged the following afternoon. I still had a catheter: this was to remain in place until a week later when I would be visited by a nurse from the hospital. She came in the morning to TWOC me! It sounds worse than the operation, but simply means ‘Trial Without Catheter’ i.e. removing the catheter and then returning later in the day to see if I was passing urine OK.
That was indeed the case, so I had one more visit the following morning from a nurse to check that I was emptying my bladder properly. It turned out that this nurse was married to the charge nurse who had been looking after me two days previously, so it was quite a family affair! Anyway, it is great to be without the catheter, and the specialist does not want to see me for six months, unless I have any problems, which seems pretty good to me.
Well, how does the Hospice fit into this scenario? Before agreeing to the operation, I have to say that I was a degree nervous, partly because the previous one had not gone quite so smoothly. So it was very helpful to talk to the hospice doctor as I made up my mind. That was extremely useful, because I was able to articulate my thoughts to her, no longer having my wife to discuss things with. Also, after the operation I discussed with her the increasing frequency of my atrial fibrillation episodes (I actually had another the day after my discharge). So although the prostate operation was fine, she agreed with me that I really needed to talk my GP with a view to seeking specialist advice. I have now done that, and await a referral appointment. Maybe I’ll be telling you about that sometime in the future!
I was also not forgotten by those at the Day Hospice. One of the things we often do after lunch is to have a session of Family Favourites, and I think that everybody at the Hospice knows that it is definitely well down the list as far as my favourites are concerned! Indeed, I look forward to times when I am due to see the doctor or have some reflexology so that I miss the game! Accordingly, although I had to miss one Tuesday at the hospice because I was at the hospital, I had the consolation of knowing that I was spared Family Favourites – or so I thought. For in the post came this anonymous sheet of paper bearing the previous day’s questions: the day unit folks could not resist the opportunity of winding me up a little! Of course, it made me smile, as intended, and is just another example of how we continue to think about one another, even if we are not physically present.
Well, I have gone on at some length about my hospital experience. That is not because it was unique, since so many of those attending the Day Hospice spend various times in hospital for operations and treatment. No, it is because I hope that it might help to reassure those awaiting operations and treatment, often much more significant than my pretty minor operation. I wanted to be able to demonstrate that the experience does not have to be frightening, although I know that there is likely to be an element of nervousness beforehand. There was for me, but it all went so well that I ended up writing to the hospital chief executive to say how well I was looked after, and asking him to make sure that the appropriate staffs were informed. All too often they are in receipt of brickbats rather than bouquets.
Finally, I should comment that being able to come back to the Day Hospice, reporting on things to the doctor and nurses, as well as chatting to the other patients and volunteers, felt almost like returning home after a holiday! That may sound ridiculous, but I did find it to be an important part of my recovery process. Thank you, everybody!Atrial Fibrillation is a heart condition that cause an irregular and abnormally fast heart beat