The walking cure

On Wednesday 31st August, the day after my catheter and staples were removed, I started a walking regime to help me get as fit as quickly possible. It is now a week later and since then I have met the steps target set me by my Vivofit everyday. While I continue to hit the target the Vivofit increases the step target each day. Last Wednesday this was 7728 and by Tuesday 6th September it had increased to 9347. Over the week I walked 82,912 steps, an average of 11,845 per day, about a 5 mile average. Walking was the only form of exercise that was recommended for the first few weeks with no further instructions other than to “listen to my body”, which I did. Towards the end of the week I started to incorporate a few hills. I’ve been very happy with the way it’s gone and feel significantly better now than I did a week ago. More of the same for another couple of weeks I think although I will not be particularly worried if I don’t meet the targets set every day from now on.

I went to the squash club at Heaton on Thursday 2nd September, 11 days after the operation, and had about a 10 minute knock by myself to see how it felt. I didn’t push it at all, just hitting to myself down the side walls in the channels and some figure of 8s at the front to minimise my movement and not damage myself. I felt fine with no twinges. I did the same again on Monday 5th with the same result. I will start going regularly to build on this but it will be a while before I play against an opponent, even socially. Thursday I should be able to return to doing a little coaching as before. My weight has stabilised at around 12 stone 9 or 10, about 6 lbs lighter than when I went in for the operation so my strategy to not put on weight seems to be working so far.

With a view to starting cycling again I have been researching saddles with a cut-out to relive pressure on the perineum. Normal saddles put pressure on this area and can be quite painful for quite a while after a radical prostatectomy as this bears directly on the area where the urethra has been joined up. This gets better over time apparently. I probably won’t ride until I’ve seen Mr Singh and I may need to know if I should delay until after radiotherapy if that is needed.

I have spotted on a couple of occasions a very small blood clot being passed in my urine but have decided not to worry about it. I have 4 weeks before my scheduled appointment with Mr Sing and the BRI (when I will get the histology report and learn if I need radiotherapy) and will mention it then if it continues.

Getting back to normal

On Tuesday 30th September, 9 days after the operation, I went back to the BRI at 7.30 in the morning to have the catheter and staples removed. The catheter removal I had dealt with before but staple removal was new and I was quite apprehensive about it. The staples are more like the staples you hammer into wood to hold wires in place rather than the office type of staple that go through paper and bend round so the procedure was quick and painless apart from the odd brief sting. Normally staples come out between 10 and 14 days but it made sense to remove them at the same time as the catheter appointment in this case if the surgical wounds are sufficiently healed, which they were.

Then it was just a case of sitting in the waiting room and drinking slowly and steadily two 700 ml jugs of water in order to produce three sufficiently prodigious wees. This involved going to the gents’ toilet and weeing into a bottle with you name on it on a rack – there were 5 men going through this procedure. Every now and then Staff Nurse Sarah (who I thought of as Nurse Catheter) would check the bottles, record volumes and empty them. I managed this without too much difficulty and was allowed to leave at about 11.00 am when Julia picked me up to take me home. I was given a few incontinence pads to take home with me and I was advised to use one straight away before I got of the treatment table as there might be a sudden surge as I stood up. Nothing happened but it was better to be safe than sorry. It is not always as straightforward as this I discovered talking to the other men. Sometimes there is no flow and the bladder just fills up. In these cases a catheter had to be installed again. We were advised to only drink about one small gals of water per 15 minutes as in the past men keen to get away had drunk 2 jugs full straight off in their haste to get away only to find they couldn’t wee and put themselves through some serious pain before a catheter could be replaced.

On arriving home I went for a walk around the local park and felt immediately that I could walk better and in more comfort now the catheter had been removed and felt optimistic about gradually building fitness again although this would be restricted to a walking only programme for a few weeks. I wore the pads for the first two days but didn’t have any leakage problems at all so have pretty well dispensed with them although I’m not fully confident. Most men suffer to some degree or other form incontinence after the operation. For many it is only for a few days, perhaps a couple of weeks. For others it is a constant problem that requires further corrective surgery. It looks like I will be one of the few who don’t suffer at all. If this is the case I think it will be down to two factors, my general level of abdominal fitness through cycling, walking and racketball and the fact that I have been pretty assiduous in doing my pelvic floor exercises for a couple of months before the operation.

My key advice to any man who is going to have this operation is to try to lose a bit of weight and get fitter if necessary but in any case do your pelvic floor exercises. I was instructed to do the exercises as soon as the operation had been done and not wait for the catheter to be removed. While incontinence remains a problem you should do the exercises the recommended 3 times a day. Once continence is achieved this can be cut down to twice a day, for life. Given that you can do these any where at any time, standing up, sitting or lying down, and they only take about 2 minutes there is no excuse. I shall continue with 3 times a day.  I may yet have to have radiotherapy, depending on the histology reports on my prostate and the surrounding tissue removed. This can also produce continence problems as side effect so I want to be in as good nick as possible just in case. I will find out if I will be getting radiotherapy when I see the consultant again on the 6th of October.

Yesterday, Wednesday, I went on a fairly hilly walk of about 2.5 miles and am feeling stronger every day. I will be building up the walking over the next 3 weeks before I have a short easy bike ride, probably only 10 minutes or so somewhere flat, to see how that goes. I’ve had to withdraw from two racketball tournaments in both of which I was lying 2nd in my group. However, the 2016 Yorkshire Racketball Championships are to be held on November 26th and 27th and I hope I may be able to play in this, in the over 60 group.

The first week

I was pretty uncomfortable when I got home and found it hard to stand from sitting or twisting in any way. This got better every day and by the end of the week apart from the odd twinge as long as I took it easy and slowly I became a lot more mobile. On the Tuesday I just took a few steps round the house but spent most of my time lying down and watching La Vuelta and Hong Kong squash on Eurosport. Wednesday I had a very slow walk around Greengates Park, about 15 minutes, with Julia but since then I have been doing two walks a day of between 20 minutes and 40 minutes, definitely getting a bit stronger and a little quicker each day.

I was surprised when I got home and weighted myself the next morning that I had gone up form about 13 stone 2 lb before the operation to 13 stone 10 lbs on my return 2 days later. I wondered if they had left some instruments in me. My tummy was quite bloated but for the best part of the operation day, Sunday, I hadn’t eaten of drunk. The next day, however, Wednesday 24th, I weighed in at 13 stone 3 lb which made a bit more sense. I had already decided to go on a low carb diet when I got back without sacrificing protein intake as I was concerned about putting on weight and losing muscle over the weeks of relative inactivity to come. I had also been advised to eat small amounts more frequently and avoid large meals so as not to overload my stomach. Constipation and straining were a concern, hence also the laxatives I was given as part of the discharge pack. By the end of the first week, Saturday 27th, I was down to 12 stone 10 lb.

One concern that is worth recording is that my wee remained bloody (rose, not claret) until Thursday evening, 4 days after surgery. The notes given as part of the discharge pack stated that this should clear within 24 hours and if not phone the hospital. This I eventually did Thursday morning where I was told not to worry about it too much if it was only pink but let them know if it continued for more than another couple of days. Needless to say since Friday 26th it has been clear a a bell. The other problem I had was quite a pronounced ache across my shoulders and occasionally at the top of my chest. This passed after a couple of days and when I mentioned this I was told it may be due to the gas they pump into my abdomen to make space for the operation which is generally dispersed within my body and has been known to cause some temporary chest and shoulder pain. So, so far so good.

Immediate post op and discharge

I finally went down to the theatre about 2.00 pm on Sunday 21st August and woke up in bed round about 7.00 pm that evening is some discomfort. Julia was there and apparently we had a conversation but I remember very little about it. She reports that I said I thought something had gone wrong with the operation as I had oxygen tubes up my nose and I don’t remember any one else coming back form the theatre with these. I also had a little more pain than I expected. She left after 30 minutes as I had fallen back to sleep. I was awake at midnight as I had to have some pain killers, a combination of paracetamol and Tramadol (officially a class A drug) and injection of Tynzoparin, a blood thinner. I had the first of these at midnight Saturday and I must have one every 24 hours for 28 days after the operation. These are to help avoid DVTs during a prolonged period of relative inactivity. By now a rather confused and near unintelligible man had been put in the bed next to mine and spent the next few hours calling for his wife. He thought he was in bed at home and that his wife was downstairs. He quietened down in the early hours and I eventually got off to sleep again.

I hadn’t eaten or drunk since 7.00 am before the operation. I had been given a mouth care pack back on the ward, basically a small amount of water and sponge ‘lollipops’ to moisten my lips and mouth, so by 7.15 am on the Monday I was looking forward to water, a cup of tea and some breakfast. During the operation and over night I had been on a hydration drip. I had to, and will continue until the catheter is removed, drink 2 litres of water a day to keep every thing flushing through. No fresh fruit on offer so a small portion of orange juice and a bowl of fruit and fibre cereal. Julia had brought me some fruit and a Sunday news paper the night before,placed on the seat beside the bed, but I couldn’t see these and hadn’t remembered. I was still quite sore and it was hard to change position in the bed without pain.

The doctors’ ward round took place about 9.00 am. I didn’t see Mr Singh, the surgeon who had carried out the procedure, but another surgeon who apparently assisted him. He told me that the tumour had been quite a lot bigger than expected and had poked out of the wall of the prostate a little more too. This meant they had to take a wider ‘clear margin’ in addition to the prostate on the side with the cancer than planned. There had been some discussion of whether they should remove the lymph glands in the circumstances but decided against it and stick to the original plan for surgery. Another complicating factor was that the prostate in that are had ‘stuck’ to the surrounding tissue. They don’t know yet if this was because of the penetration of the tumour or because of damage done by the targeted biopsies taken from the same area. All the material is sent of to the laboratory to grade the cancer in the prostate and to see if any cells had escaped into the surrounding tissue. I was warned that this increased the chance of needing addition radiotherapy but the results would be back in time for the consultation meeting 6 weeks after the operation. In the meantime we must just wait and hope for the best.

Later that morning Mr. Singh came to see how I was getting on and I told him what I had been told. He seemed slightly surprised. He confirmed what had been said but seemed slightly more relaxed about it. His assistant turned up at that point and seemed nervous that I’d now been told something different. I am assure him I hadn’t.

All that remained now was to get onto my feet and walk a few paces when I felt able and, all being well, got through the discharge procedure so Julia could come to pick me up and take me home. I had a couple of short and very slow walks down the ward corridor and by lunch time I was given the all clear to go home. Unlike last time I was on the ward after my bike accident, April 2015, I was to be discharged from a special unit in ward 19, the other end of the hospital, too far to walk but I would be picked up and taken there in a wheelchair. I found getting dressed and packing very painful and after a while went to the nurses’ station to request the pain killers I had, as is my normal practice, turned down in the morning. I handle low levels of aches and pains pretty well and have always preferred not to take drugs if not necessary as there is always the possibility of side effects some of which can be long lasting and damaging. However, I didn’t think I could get through discharge and then home by car without some help. They gave me another 2 paracetamol and 2 Tramadol and within 20 minutes or so I was feeling better. The nurse taking me to the dischareg unit came for me at that point and finished my packing and put my socks on for me, put my shoes on and tied my laces. The first time anyone had done this for me since my mother over 60 years ago!

TynzoparinThere was a slight hiccup and delay as my prescription for take home pain killers was wrong and had to go to another doctor to be altered. The discharge procedure took nearly 3 hours in all (it only took 1 hour on the ward last time) but went fairly smoothly. Most of the time was waiting for the prescription to made up by the pharmacist. I was given a packet of paracetamol and of Tramadol and two packs of Movicol, a mild laxative and stool softener. They were keen that I didn’t strain while going to the toilet especially as lack of activity could cause a degree of constipation. I was also given a pack of 28 preloaded disposable hypodermic needles for the self administered Tynzoparin injections. These could be done by a visiting district nurse but I had watched the first two given me by nurses and decided I would start of by trying to do it myself.

Then I was ready to go. I had phoned Julia a little earlier and I walked to the entrance with the nurse carrying my bags and medication so that Julia could just pull up and I could get straight in. She was there, it was about 4.20 pm by now, and I had an uncomfortable ride to Greengates in the beginnings of the rush hour traffic. However, it was good to be home and after a light dinner all that remained was to stay awake until midnight to give myself the my first injection.Although quite fearful about this it was OK and I’m sure I’ll get used to it. In fact you are given a 2 hour window either side of the 24 hour period so I did it at 10.30 and continued to do it at 10.00 pm, our normal bedtime, give or take. The next morning, Tuesday, we would plan my recovery programme – particularly exercise and diet.

Countdown to the operation

After the information I was given by phone reported in the last two posts, I had a meeting with my consultant on the 21st July. The additional tumours detected by the MRI scan and following targeted biopsies show a significant volume of more aggressive cancer that is pressing against the prostate surface and there is some evidence that cancer may have begun to poke through into the surrounding tissue. Active surveillance is no longer an option and, for reasons described in earlier posts, surgery seems to best choice as it leaves radiotherapy as a possible plan B. If the tests of the surrounding tissue that will be removed along with the prostate are all clear radiotherapy may not be needed but will be used as a backup if cancer cells are found outside the prostate. I have opted for the surgery. I was told that the provisional date for the operation is Wednesday 24th August but might be earlier as they have begun to do weekend surgery to help clear a back log of operations.

After this meeting Julia and I were invited to a seminar on the 4th August with other men due to have the operation over the next few weeks to meet with the surgeons, radiologists and physios to have the operation explained in more detail, what the side effects are and how these are treated. Mr Singh, who will be my surgeon, was very enthusiastic about the semi-robotic procedure that the BRI are now very experienced with and the much better rates of recovery obtained. We were shown one of the arms that are inserted through a small 2 cm incision with the surgical implements and how they worked to get round corners and into the restricted areas that in the past have made prostate removal such a tricky business. The operation involves 5 small ‘keyhole’ incisions for the surgical instruments and the camera. A slightly larger incision is necessary for the removal of the prostate. They will be taking some additional tissue from around the prostate where the tumour is poking through and tests will show whether any cancer cells have leaked out. If so I will need 4 weeks of radiotherapy in due course when I have recovered sufficiently from the operation but all being well this won’t be necessary. However, I’m not optimistic about this and so far my intuition to fear the worst has proven to be correct. I hope I’m wrong this time. On the whole the seminar was positive. A patient who had the operation a couple of months before spoke about his experience and I found this to be encouraging. He had a Gleason score of 9, so a higher risk than my score of 7. He is currently waiting to see if he will need radiotherapy but has had little problem with incontinence. The other highlight of the seminar was the talk about Viagra and the vacuum pump and there use to try and rehabilitate erections. These can take up to a year to return and for some men it never does. I depends on how easy it was to get erections before the operation and how much nerve damage is sustained. The Viagra and pump are to help keep the blood vessels in the penis fully functional so that all is well if and when the nerves get their act together sometime in the future. The pump produces an erection that deflates as soon as the pump lets in air again but apparently it can be sustained for a while with the use of a rubber ring that acts like a tourniquet. This looks quite painful so I don’t think I’ll bother! The combination of the Viagra (3 to 7 a week for 10 days or so I think) and the daily use of the vacuum pump is just to keep things ticking over and to prevent your member withering on the vine,so to speak. The other rather disconcerting aspect of the operation is the necessity to self-administer injections into the fat of your tummy with a blood thinning agent. I think this is for about 10 days and is to minimise the development of possibly life threatening blood clots. Our man said he had no trouble with these and the needles used were about as thin as you can get. We’ll see.

Anyway, I have just learnt that my operation is now confirmed for Sunday 21st August, three days time, and I will be going into Ward 14 of the Bradford Royal Infirmary 2.00pm Saturday afternoon.

Update: Saturday 20th August, 12.00. Just been told there won’t be a bed ready for me at 2.00 pm and so I’ve been asked to come in for 6.00 pm. It’s still OK to eat as usual before then as they will be ‘starving me on the ward’.

Locally advanced prostate cancer T3a

This morning I had a a phone call in reply to the questions I emailed yesterday evening. David and Ian do get back very quickly which is excellent. The email asked a couple of questions that arose when I had given a bit more thought to yesterday’s conversation and a bit of research I did subsequently. The biopsies discovered additional more aggressive cancers and I had now been given a Gleason score of 7 (previously 6). The total score is made up by the addition of the individual scores for the grades of cancer. 3 is the lowest grade for slow developing cancer so the best grad to have that indicates cancer is 6. A score of 7 indicates that there is some cancer present of the next higher grade, 4, which indicates more aggressive and fast growing. The score of 7 can be a 3-4 or a 4-3 where the first score is for the most common grade. Mine turns out to be a 3-4 and, as the prognosis for this is better than for a 4-3, this constitutes good news!

2406-how-prostate-cancer-is-diagnosed-t3a_250x229However, I was also told at what stage my cancer had developed too, T3a. This is not good news as it is now deemed to be a ‘locally advanced’ prostate cancer. T3a means that the cancer has broken through the capsule of the prostate but there is no evidence of it having yet spread to the seminal vesicles, lymph nodes, bones or other adjacent organs. Ian on the phone this morning said that the tumour is ‘pressing on the surface’ which implies it hasn’t broken through yet. What this means thou is that remaining on active surveillance is no longer an option and some treatment is necessary. I am seeing the consultant on the 21st July when we get back from France and the recommendation is highly likely to be surgery, a radical prostatectomy. Whether I will need radiation treatment as well after the surgery will depend on what they find and subsequent pathology tests. Ian said they may go ‘a bit wider’ on the right side where the tumour is pressing and that this might lead to a bit more nerve damage. I assume this might have consequences for my rate of recovery form the normal side effects; incontinence and erectile dysfunction so it is something I will need to ask about..

According to this leaflet from Prostate Cancer UK surgery is not normal offered to men with advanced local cancer.

 “A small number of men with locally advanced prostate cancer may be offered surgery (radical prostatectomy). This isn’t very common and is usually only offered as part of a clinical trial”.

Locally advanced prostate cancer http://prostatecanceruk.org/media/2491080/2796-locally-advanced-prostate-cancer.pdf

I assume that this is because once the cancer is through the capsule then surgery can no longer offer a cure and other treatments would be necessary anyway. Ian was talking this morning as if surgery was going to be recommended. If this is the case I can only assume they are confident that the tumour is still contained albeit pressing on the surface and so surgery is a good option with the chance of complete cure. The fact that he said they may need to go a bit wider where the tumour is pressing suggests they are not 100% confident as is the suggestion they may still recommend radiation treatment, depending on what they find while they’re in there.

All the Prostate Cancer UK fact sheets and tool kits are available to download from here: http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Prostate targeted biopsy results

Today, about four weeks after the biopsy procedure, I phoned the BRI and got the results which were discussed at yesterday’s multidisciplinary team meeting. I was told that the results were positive and two of the samples (12 in all) showed more aggressive tumours and a greater volume of cancer. My Gleason score has been put up from 6 to 7. I know that this is the addition of two separate scores for what are considered to be the primary and secondary tumours. A score of 7 can be 4+3 or 3+4 where the prognosis is significantly different in each case (the first case being less favourable) and that this will inform the discussion and recommendations of treatment. I was told one of the options would be a radical prostatectomy followed by radiation. I didn’t query this at the time but it might mean there is a risk the newly discovered tumours are either pressing against the prostate surface, the capsule, or even through it. It may still be local, i.e. not metastasis, but it would mean surgery alone might not be enough. I was going to be offered an appointment with the consultant, Mr. Singh, on Thursday 14th July but I will be on holiday in France on that date so it will be pushed back to the following week, probably Thursday 21st. I was assured at the time that a delay of a week would be insignificant but I have emailed and left a phone message this evening asking for more details on the Gleason score and a reassurance I don’t need to cancel my holiday. I will if necessary. This is bad news but I’ve been prepared for the worst ever since I was told the MRI scan showed a cause for concern and a targeted biopsy was needed. Given all the crap that is going on at the moment over the referendum result and the UK leaving the EU I have been as low today as I have ever been. No doubt I will feel better tomorrow and have a weekend in Oxford coming up with my family of 81.

 

Second biopsy

After seeing Mr Singh last Thursday I have opted for another targeted biopsy. At the moment I have been diagnosed with T1 cancer in roughly the position in the diagram below but, after a reinterpretation of my January MRI scan, there is cause for concern about the possibility of further cancer in the lower, narrowing part of the prostate. Apparently only about 5% of cancers are detected in this area but when they do occur there it can be dangerous as they are nearer the surface and can more easily break out into the surrounding tissues and organs. The biopsy may show nothing of concern, perhaps just some inflammation, but if there is any cancer there, even of the low grade I already have, then it looks like surgery will be strongly advised given the vulnerability of the area. Although this would be bad news as long as the cancer is still contained then the post surgery prognosis should be optimistic. I am expecting and appointment in the next 2 weeks and results should follow in about another week or two so hopefully by the end of May I will know where I am. When surgery was initially discussed last year I was told it could be scheduled in about four weeks or so. If that is the case it may be about the end of June that I have the operation. According to the NHS website it may take several months for my body to fully recover from surgery. The say it is necessary to take it easy for the first couple of weeks after surgery and then a little light exercise such as a short walk every day to improve fitness. I will need to avoid climbing too many stairs, lifting heavy objects or doing manual work for eight weeks after the operation. I will have to ask about cycling but it looks like this would be out for a couple of months. Also my early trips to Oxford and France look would be out, especially if fitted with a catheter. Diagram_showing_T1-3_stages_of_prostate_cancer_CRUK_278.svg

Prostate update

I had my MRI scan on the 28th January but heard nothing for over two weeks. I eventually phoned to see what was going on and heard that the scan had not been seen by the multidisciplinary team yet. A week later I phoned again to be told that there was no change and I would remain on active surveillance. I got a letter to this effect on the 18th February recommending staying on active surveillance and that a blood test would be due in three months, i.e. mid May. So all was well. However, on the 25th March I received another letter saying the MRI scan results had been reviewed and that certain features warrant further discussion and targeted biopsies. This was immediately followed by another letter with an appointment for the 21st April for the procedure when I would be away in Norfolk for a family holiday. I phoned Ian, my contact nurse, to find out what was going on and he explained that their usual expert scan interpreter had been away and someone else had looked at it and said all was well. Since then the main person had returned and reviewed the scan and decided all was not necessarily well. I  don’t know yet whether the first interpretor saw the same thing and thought it insignificant or whether they missed something altogether. Either way this was a bit of a shock. Ian suggested I skipped the discussion with the consultant, Mr. Singh, and we booked an appointment for the biopsy for as soon as I got back from holiday. I opted to have the discussion first as I wanted to be sure another biopsy was really necessary at this time and whether it would be reasonable to continue with blood tests for the moment. So I’ll be seeing Mr. Singh Thursday this week. One of the big problems with prostate cancer is the uncertainty of diagnosis for the sort of low level cancer I have. I can see why some men opt for the surgery regardless and have done with it. If I have the biopsy and the result is that I have surgery this is likely to be in in late May or June. This could well bugger up my arrangements to be on holiday in early July, a second summer wasted.

Taking steps

In the last post I noted I had started cycling for fitness again in July 2012. This was very successful in terms of weight loss and by November 2013 I had got down to about 14 stone 7 lbs. It was then, partly because the weather was changing as winter approached, that I began to incorporate walking into my routine. This was reported in a post in my cycling blog Cycling, walking, hitting a ball in December 2013. I started doing specific walks round my immediate vicinity in the Aire Valley on the borders of Bradford with Leeds. Shortly after I began to use walking as an everyday form of transport often walking to Bradford centre and back for U3A meetings, or to Shipley and back for my U3A reading group meetings. Any trip of 3 miles or less is walked if I have the time or if longer and going by bus I will walk the first mile or so or the last bit of the journey. I try to walk every day that I don’t wither cycle or play racketball, even if it is only for 30 minutes or so although I usually manage up to an hour. The Garmin Vivofit I started using in December 2014, just over a year ago, has recorded about 2.5 million steps so far in 17 months.

Cleveland Way September 2012 011

Over the years I gradually put on weight and finally approached 18 stone about four years I still did some walking with my brother-in-law Kevin. The picture above was taken while on a walk along part of the Cleveland Way near Whitby in September 2012, when I was about 17 and a half stone. We didn’t do more than about 8 miles a day and, despite wonderful weather and scenery and some great evenings in pubs listening to live music and chatting with the locals, the trip was dominated by aching legs and sore feet more than anything else. This was deeply disappointing as I used to find walking a very enjoyable and rewarding activity. This greatly added to my motivation to get fit and lose weight for my retirement. Now Kevin and I are planning some longer walks. In fact last September 2015 we had a few days walking round Malham and part of the Pennine way covering, on one day, about 12 miles. By then I was down to about 13 stone so a very different story!