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Prostate disease blog

Personal stories, advice and support from people with prostate diseases, such as cancer and BPH.
  • In December 2009 my partner and I armed with our web-site www.prostatecancercheckitout.me.uk and the Direct.gov list of UK local Councils decided to contact all 434 Council by e-mail. Our initial aim was to request them to display our  poster in all public and workforce urinal areas in order to enlighten men with what they may see as tolerable minor waterworks problems, that they may not be minor and should be investigated.

    Our poster that can be down loaded from the "Raising Awareness" page of our web-site simply advises men with symptoms that are common to prostate cancer to get them checked out by their GP. It took two months to send out the requests, some Councils responded supportively, some with further queries, many didn't respond. The support came in various ways. Some Councils no longer had public conveniences under there control, so offered other means of getting our message across, others as well as displaying our posters also used other means as well. These included, linking our web-site to the Council's web-site, placing our message on the Council's intranet and placing articles in the Council's door to door publications. We updated our web-site to include more down load material and these other methods of spreading awareness. A month later another 434 e-mails were dispatched, to thank some Councils, encourage others and attempt to get responses from those who had so far failed to respond. The support increased. On top of responding to incoming e-mails, at four month intervals two more rounds of e-mails were dispatched.

    The current picture is that 185 Councils that is 42% are supporting our project, we are still awaiting decisions from a further 143 Councils and sadly 95 Councils have still failed to respond. Only 11 Councils have so far rejected our project most because they are running their own prostate cancer awareness scheme, but the remaining few Councils, through talking to their health partners have other reasons for not supporting our project. These include :- If you screen 100 men you might only find three men who have prostate cancer, if you screen men you will raise anxieties in men who have not got prostate cancer, we only deal with professionals and charities, we do not have the funds. We have come across these arguments many times whilst building our support and our answers which have convinced most is - Firstly,we are not advocating screening, we are aware of the current testing problems, though having said that we are not happy about the position that puts the three men in that could be found in every hundred. We know our project has short comings also, as we will not pick up men until symptoms are apparent, on the plus side we know we are alterting some men, as although we don't request feedback we have heard from men who have now been diagnosed with prostate cancer and also from men who have been successfully treated for other ailments as a result of getting checked out. Secondly, we would not be spending months of our retirement life progressing this project if the professionals and charities had listened to us and done it themselves and thirdly Patricia and I like to go out, we go out locally and touring and whilst out we may call in pubs, clubs and restaurants, when we do we seek out the landlord or manager and request them to display our posters. In one such pub after we had made our request the landlady said "What about the women" I must have looked puzzled as she continued saying "Who is going to get the man to get seen to, the women need to know the symptoms also" This comment introduced a further poster for down load from our web-site. The manager in a local club accepted the posters for display and later in the evening came to our table and requested us to go on stage and make a prostate cancer presentation, we were taken by surprise but we did it. At the end of the evening the manager gave us the £121 raffle takings. With half this money we bought a laminator, pouches and sufficient paper to produce over 400 posters to enable us to extend our local work to included relevant businesses. It made us realise that with £60 we could raise awareness all over a town, how much should it cost the Council to place posters in their public and workforce areas.

    Patricia and I can only scatter the seeds hoping that others will grow the awareness, please visit our web-site, down load our posters and visit facilities in your area to see if management will support our aims to raise awareness of prostate cancer symptoms, in order to reduce the number of men that die through becoming aware too late. Thank you

     

  •  

    In 2006 Ellen and I placed our house on the market, our intention was to sell up and move to Spain.

    Fortunately I over valued the house and it did not sell. 2007 was a disastrous year with the loss of my wife Ellen due to a sudden fatal heart attack at the beginning of the year and the removal of my prostate gland due to cancer towards the end of the year.

    It was now 2008 and I was heading towards my 65th birthday, all thoughts of emigration had dissapeared but I still stuck to my decision to retire as I felt the need of more time to put my life back together again. My thoughts turned to the circumstances that had created my current situation.

    A wrong hernia diagnosis in 2002, the death of a colleague in 2004 due to prostate cancer, that created a vacant position where I started working alongside Patricia. These events were followed by the death of Patricia's husband in 2006 due to prostate cancer, and the death of Ellen, my wife in 2007. If any one of these occurences had not happened I might easily have become another fatality due to prostate cancer. It was solely due to Patricia's knowledge of prostate cancer symptoms gained through thirteen years of looking after her husband Andy that, when we started dating, she recognised the same symptoms in me.

    10,000 men a year die due to prostate cancer, mostly due to being diagnosed too late. Most of these probably because they ignored what they saw as minor waterworks problems until the problems worsened.

    Patricia and I became strongly convinced that if the lives of men were to be saved, men needed to be made aware of the symptoms. If a man is being regularly disturbed during the night for the need to wee, or when having gone to the toilet the man has difficulty in starting the flow, or when the flow comes it is either weak or a dribble, or when finished there is still a feeling that there is more to come, then the man could be suffering from many things, but these symptoms are common symptoms of prostate cancer. We believe that men needed to be told clearly

    If you have these symptoms, check them out, see your GP”

    We looked around and didn't find anyone putting out this message clearly, the only posters we found raising the awareness of prostate cancer contained subtle inuendo messages and no mention of the symptoms. We felt men who considered their ailments as a temporary inconvenience that would go away sometime, or men like myself, who had been told it was due to something else and to come back if the symptoms get worse, or men who had accepted their minor problems as a way of life, would not go seeking answers from doctors or health promotions. When we came across a poster that called prostate cancer “The hidden cancer” we decided it shouldn't be and decided to go it alone by bringing it out of hiding by creating our own poster for circulation.

    Our next thoughts were related to where the posters should be displayed in order to make the symptoms visible to the most vulnerable men. From my own experiences, if I was out for the day or at work, sometime during the day I would need to visit a toilet at least once, so I approached my local Council to see if they would display posters in all their public and workforce urinal areas. My request was successful.

    Spurred on by this I tried sending the poster out as an attachment to an e-mail to what I saw as relevant businesses with public toilets, Railway companies and Premier Football Clubs. A few railway companies that had administration of stations supported our project, very few football clubs bothered to respond and the ones that did did so in what seemed to be a standard letter, informed me that they already give to charities, or that their advertising is in the hands of contractors.

    I stopped and took stock of how this project needed to be progressed

    See how the project progressed next week when my daughter created our web-site www.prostatecancercheckitout.me.uk in 2009 giving visitors the ability to down load our awareness raising material.

     

     

     

  • My first post on this subject will I hope act as a cautionary tale to all men.  Around a year ago following a routine test I was referred to my GP because my blood pressure was a little high, blood tests followed which included a PSA test.

    The Blood pressure problems were sorted and the PSA test came back as 4, quite normal for a man of 55 years of age.  The GP asked if I had any on the symptoms, no was the reply, possibly a little urgency but nothing that caused a problem.

    I was asked to go back a year later for a follow up test, this came back as 4.8, still not high but up over the previous year, again the questions asked and the response was the same.  The GP felt that given I had been diagnosed and treated for a malignant melanoma some years previously it would be advisable to have a biopsy

    Given the low PSA score and no symptoms to speak of I approached my appointment with the consultant to receive the results in a positive manner.  Unfortunately a clear result was not the case and I was informed I had a Gleeson score of 7 and treatment was required.

    If I can push one message out to people it would be, don’t be complacent, a low PSA score does not mean you are ok, and please remember to go back once a year for follow up checks.

  •  

    What can I tell you about the Radical Prostatecomy? Extremely little, I arrived with prostate cancer and five days later I left without prostate cancer and my prostate gland. The operation had been postponed to allow me, Patricia and two teenage girls to have our booked holiday in Teneriffe. The girls gave me more to be concerned about than a mere cancer operation.

    But now I was in hospital, I had been informed about what was going to happen and the thoughts of an epidural and the insertion of a catheter was causing a steep climb in my anxieties.

    What happened next? I remember being wheeled down to the theatre and then a period of fading in and out of reality back on the ward. With my eyes closed there were black creatures crawling over the ceiling and hovering over the bed, with my eyes open they converted into hospital staff moving about the ward. I eventually stabilised and became more focused with my surroundings.

    A patient in the bed opposite said that everybody had been kept awake all night as staff seemed to be very concerned about my condition. Evidently I had lost more blood than I should have done and they were putting it back throughout the night, but let's face it. I knew nothing about it. In fact my anxieties about what I would be going through between arrival and departure were totally unfounded. Before going to the theatre I was not at ease about the thought of an epidural and the insertion of a catheter, when I awoke I suppose I had had the epidural and I found the catheter was in place, my fear then switched to its removal.

    Visitors came, visitors went, the days were long but the rest and recovery was needed.

    A guy of thirty-five moved into the bed next to mine, he had had the same removal of the prostate gland operation as I had had. It turned out that his father had died two months earlier and so he had been checked out and diagnosed as having the cancer in its early stages. His choice had been to have the gland removed.

    The day came when I was told I could go home as long as there was no problems when the catheter was removed. I winced at the thought.

    The nurse came, she told me to relax and breath steadily, a steady pull and it was out in a couple of seconds. Not a nice experience but it was not painful

    I was given three urine bottles and was told I could go home after I had used all three.

    A little while later, job completed and I was ready for discharge.

    I have only praise for the way I was kept informed, advised and treated right through from diagnosis to discharge both at Doncaster Royal Infirmary and the Sheffield Hallamshire Hospital.

    There were two situations on discharge that may benefit from closer scrutiny to save the discharged patient from embarrassment or inconvenience

    Firstly, after using the three urine bottles, before being discharged I was asked if I was having any trouble holding my water (was I leaking). Considering I had only just had the catheter removed and then told to use the three bottles I had not had enough time to answer that question. Considering that that question was being asked in order to decide on whether to issue incontinence pads or not, by saying I had had no problem I left hospital without any, only later to realise I did need them. Luckily, Patricia still had a quantity of pads left over from her late husband's treatment, which I made use of.

    Secondly I believe there had been a transfer of responsibilities between NHS Doncaster and NHS Sheffield in the handling of cancer cases. The Doncaster District Nurse was unsure as to her role in my care as she had been told to refer any problems I might have to Sheffield. This situation was never put to the test as apart from the requirement of pads I never had any other problems, but the pad situation continued. I requested pads from the district nurse. A few days later the nurse brought me three different types and sizes and told me to order the type and size I required. This I did, and I was told I should receive them within five weeks. By the time they came I did not need them.

    This happened in 2007, I hope patients are no longer being put in this position.

    With a PSA level of 0.04 I am clear of cancer and my PSA tests have been reduced from quarterly to annually.

    See next week what my partner Patricia and I are doing to raise awareness of prostate cancer symptoms.

  • Having cancer, particularly early stages of cancers such as prostate, doesn't necessarily affect your ability to do a job; but does having cancer affect your employment prospects and future career?

    For some people, the knowledge that you have cancer can be so devastating that you are unable to work, but for a lot of sufferers one can get on with their job with little time off for biopsies, consultations, blood tests etc.  But is there then a stigma attached?

    You may recover from the cancer following treatment, and although this shouldn't affect your future career, are you going to be one of those selected for redundancy or overlooked for promotion as you might be considered at risk of recurrence of the disease?

    My late wife was made redundant following her second bout of breast cancer (and there was significant potential for challenging this in court), but she saw this an an opportunity to get out and run her own business.  For me, I can't see a business that interests me, apart from my qualified position where there are challenges for both permanent and contract positions at the moment.

    The time I took off for my prostate cancer was very short, with a day for the biopsy; and three days for the HIFU/TURP procedures.  Consultations and MRI scans were usually in my own time, or the time was made up.  But when the redundancies came, I was one of those selected.  One can't help but wonder whether the prostate cancer played a part in the selection.

    Fortunately, I do not need to declare past medical history when applying for jobs now; but if word got out, would prospective employers back off?

  • It was now July 2008, before leaving my doctor's surgery two weeks earlier a nurse took another blood sample so that the PSA results would be available for the hospital specialist. I was obviously apprehensive but calm and basically resigned to the outcome. Patricia came with me in case there were questions that needed asking that I wouldn't know of, but her with her thirteen years experience of the problem may want me to know about. We sat in the waiting room at the Doncaster Royal Infirmary. My name was called and we were taken in to see the specialist.

    He began by introducing himself and asking me a few personal questions, I think more in the line of making me feel more at ease and making sure he was talking to the right patient. He asked how I felt and I told him I would feel better when I knew my situation. He told me that the second PSA blood test had confirmed the result of the first, that was a PSA level of 12.4. He told me that with any cancer the earlier the diagnosis is done, the less grip the cancer has and the more options are available to treat and hopefully remove the cancer. He told me that he would know more about the status of the cancer after I had had a biopsy. He said that if I was agreeable the biopsy could be carried out immediately. He explained that the biopsy was similar to the Digital Rectum Examination (DRE) I had had previously, except instead of the insertion of a finger into my rectum it would be an instrument capable of removing small samples of the prostate gland for examination. Like the DRE the specialist told me there should be a little discomforture but little pain involved. I agreed the biopsy should be carried out and I was led to another room. Again as with the DRE there was the little embarassing moment of being told to lay on my side and draw my knees up towards my chest with my bottom exposed, but you soon forget about that when you are reminded again what the specialist intends to do.

    Being told what the implement was going to do during its one insertion got me wondering how big it was. The job it had to do was to remove twelve samples of the prostate gland, this conjures up the thoughts of a claw grabbing at the gland and sticking the sample in a container a dozen times, before doing this the implement has to go through the wall of the back passage in order to get to the prostate gland, so it first injects you with a local anesthetic so there is little pain as it does so, and when the job is completed another squirt, this time of an antibiotic to remove the risk of infection to the damaged area, does it also have a camera so the operator can see what is happening?  that I don't know.  Sounds terrifying doesn't it?    

    In reality I felt the insertion not much different to the painless DRE, I felt twelve very minor internal thumps as the specimens were removed and then I was told I could get up and get dressed. All over. Another appointment was made for me to receive the results. From entering hospital to going home, including the wait in the waiting room took less than an two hours.

    Mid July I returned to hospital for the results. The specialist informed me that I did have prostate cancer, he believed the cancer was contained within the prostate but I would have to undergo a Isotope bone scan, this meant an injection of a low level radioactive liquid into my arm, a three hour wait for the liquid to circulate and then I was placed into a cylinder for a full body scan. This is intended to locate any other cancer hot spots. Clarification of one area was needed and I had to return for a chest xray to eliminate any fears. It was nearing the end of July by the time the whole picture was known. 

    Prostate Cancer is graded between 6 to 10 by something called a Gleason Score. My cancer was graded as 8 and believed to be aggressive. The body scan confirmed that the cancer was contained within the prostate gland. The specialist explained the situation to me by saying if I had a PSA level between 7 and 10 I would be advised to have periodical PSA test to monitor the level. Having a PSA level above 10 I would be advised about possible treatments. In my case I was informed that were I 73 it was possible that natural causes could be the reason written on my death certificate, being 63 it was very likely that prostate cancer would be the reason. I was advised that because of the aggressive nature of the cancer I should seek treatment urgently. I asked the specialist what my options were, he told me I had only three options and they were :- Do nothing, and take the risk,  Have Radiotherapy, but not knowing for two years as to its success or Radical surgery (prostatectomy) the removal of the prostate gland. All treatments had the possibility of undesirable side affects, but I saw the first two options as still carrying a risk to my life, so I chose the prostatectomy. 

    I mentioned that Patricia her daughter and I were booked on a holiday in August, the specialist told us to go, have a good time and have the operation in September. The decision was made. 

    I would like to say at this point that I could not fault my treatment, advise and concern given out by the Doncaster Royal Infirmary in relationship to my prostate cancer diagnosis. Though an unrelated problem showed a possible breakdown in communication between the hospital and my GP. I believe it was in June, possibly on the same day as I recieved the results of my first PSA test I told my doctor about having a sore throat. My doctor examined my throat but said he was reluctant to prescribe anything until I had been seen by my hospital urology specialist. His reasons were a little too obvious. So I had to suffer a little. When my body scan threw up a query, I thought it was possibly something to do with my sore throat. When my tests were over I returned to my doctor for some treatment of my throat. He said I cannot treat your throat until I know about your cancer results. It was left to me to inform my doctor that  I had known for a couple of weeks that I had prostate cancer and it was contained within my prostate gland. The doctor then started to treat my sore throat caused by reflux. Surely in this day and age patients should have one medical record able to be updated by Hospitals and Doctors surgeries.

    I was lucky, my diagnosis was in time to save my life, 10,000 men a year die due to prostate cancer, see www.prostatecancercheckitout.me.uk to see what you can do to help raise awareness of prostate cancer symptoms.

    Next week my report of the prostectomy carried out at the Hallamshire Hospital in Sheffield

     

     

     

  •  

    A Londoner is aiming to solve 100 Rubik's cubes while running the capital's 2011 Marathon. For this Guiness World Record attempt, Uli Kilian hopes to raise thousands of pounds for Prostate Action

    The motivation for this challenge came when Uli's father was diagnosed with prostate cancer in 2009. 'It was a frightening time,' said Uli, 'And there was so little we could do to help. Thankfully my father has made a full recovery, and now I want to raise as much money as possible for Prostate Action.

    The run will combine two of Uli's passions: running and solving Rubik's cubes. Uli started 'cubing' over Christmas 2008, when he was first given a Rubik's cube, and he can now solve them in a respectable 30-35 seconds. He has run two marathons in the past, in 2006 and 2008, both in under 4 hours. But by running and cubing at once he is setting himself an entirely new challenge!

    'Uli is just fantastic,' said Kerry Johns, Head of Events and Community Fundraising at Prostate Action, 'As if running the London Marathon wasn't challenge enough! We are delighted he has chosen to run for us and wish him lots of luck in his world record attempt. We'll all be there to cheer him on!'

    To see Uli Kilian in action, visit his website at www.rubiksrun.com. To donate, go to www.justgiving.com/ulikilian

     

  • Check ups and symptoms

    by Grahamn278 on 07 March 2011

    My wife died of secondary breast cancer in September 2008, just before I was due for a health check and the day after my sister's wedding..  I paid a discounted rate for a health check through work every two years and delayed the 2008 one until October.

    Okay, so I was a bit overweight, but physically fit; and they pointed out that my PSA was a bit raised.  I wasn't sure of the value but thought nothing more of it until I went to see my GP the following May about a basal cell carcinoma forming on my nose.  She noticed on my records (which had been forwarded to the surgery) the raised PSA and advised on another blood test.

    The next test showed a value of 8.2 and so I was referred to a urologist.  He also arranged another blood test and this confirmed the value.  So, next step was the biopsy which involved a general anaesthetic, but no overnight stay.  This confirmed prostate cancer, in both lobes.  A subsequent MRI showed isolation to the prostate and options were discussed.  I opted for High Intensity Focused Ultrasound (HIFU) as it could address the issue and if it didn't then brachiotherapy or radiotherapy were still possible.  A resection of the prostate (TURP) was also required.  This was all performed in late January 2010 (the poor weather in early January had caused a postponement), just a few days after my mother passed away.  I was in for a couple of days and then went home with a catheter.  A week later the catheter was removed and the following day put back in after my pipework siezed up!  A week later it was removed and the waterworks worked properly.  The next PSA was 0.04.  Subsequently I have had readings of 0.05 and 0.06, so the HIFU has worked well so far.

    My brother in law has not been so lucky.  He was diagnosed before Christmas and since his prostate was so large, a full prostatectomy was recommended.  This was performed last Saturday and he's home today.  Fingers crossed for us all. Hopefully we can all move on and my sister regain some sanity after the trials of the last couple of years.

  • It was February 2007 when my wife Ellen died, it was a number of weeks before I regained enough composure to start back to work again. There was a welcome back announcement and condolences by the chair of the meeting, but not much else registered with me on that day. A number of colleagues were there including Pat and later the following week she rang me to see how I was. I think emotionally, we were both in the same boat, Pat having lost her husband some four months earlier. During our conversation things were talked about as to what we and our partners used to like doing together, and we found that dancing and days out were top of both our lists. Weirdly that morning an invitation to an annual ball had come through the letter box. On seeing it I thought how ironical. Firstly it was a ball that Ellen had always wanted to go to, but because it was paid for out of the public purse I never took her to it. This year, attendees had to pay and she wasn't here, I binned the invite. I told Pat and she said that she had never been to a Ball. It was still too months distant so jokingly I said "You will go to the ball Cinderella." and I retrieved the invite. That was our first fixed date. Well, actually three more were squeezed in before the ball. The first was supposed to be two days in Whitby, but I couldn't find a B&B with two single rooms in the area, and setting aside the closeness of the loss of our partners, when you are told that the taking of a hand when crossing the road is inappropriate, then two single rooms were essential. The rooms were found in Thirsk, so we had a day in Whitby and a second day coming down the full length of West Yorkshire, from Tan Hill back Sheffield. Worth doing if you haven't done it. Third date was a dance to make sure there was no lessons needed before the ball and the next was not a date but I veered off route on our way back from a meeting in Barnsley for what I had planned as a picnic on top of Holme Moss. The clouds were low and the wind was howling. You couldn't see a thing, not even the huge TV transmitter 200yds away that can normally be seen for twenty miles around. Pat puzzled, and rather anxious said where are we and why have you brought me here. I said to see the view. What view?  The clouds instantly opened showed the magnificent veiw from this location and instantly came clamped shut again. After almost losing my drivers door and boot lid in the close to hurricane winds, I served the picnic from the back seat while Pat laughing her head off ate it in the front. That is how Pat and I came to know each other.

    It was after the ball at the end of the fifth date that Pat said "You need to get checked out for prostate cancer, you have the same symptoms as Andy", Pat's late husband. I told her that I had recently had a glowing health report from my GP's Healthy Man's Clinic. I also told her that I had been to the doctor about my waterworks problem in 2002 and the GP had said it was possibly the result of a hernia. Pat immediately broke in saying, "That is what they told Andy".  I made an appointment to see my GP.                                          

    It was now June 2007. On the day I told my GP what Pat had said and he agreed to give me a DRE (Digital Rectal Examination). I had had one in 2002, so I knew apart from the slight embarrassment of having the GP insert a finger in my rectum there was nothing else to it. The examination over the GP as before said he could not feel any abnormality. I asked if there was anyother test that could be done. He asked why I was so concerned and I told him that Pat had already lost her husband to prostate cancer and if I had it I was not going to put her through it all over again. The GP agreed to do a PSA blood test. This is a normal, blood from the arm, blood test but it looks at the level of prostate-specific antigen. (Actually the proper procedure should have been the PSA test before the DRE because carrying out the DRE can raise the PSA level but in my case on that day the outcome would have been no different). A few days later the surgery rang and I was requested to make an appointment to see my GP.

    On this appointment I was informed that I had a PSA of 12.4 and it was advisable that I saw a cancer speciallist at the hospital. An appointment was made.

    My life may have been saved by Pat, the widow of a victim, knowing the symptoms, men with minor waterworks problems should not have to rely on such a chance encounter to find out that their symptoms are not minor but could be life threatening. Please visit www.prostatecancercheckitout.me.uk to see how simple and low or no cost it is to alert men to the danger they may be in.

    Read next week what the Specialist had to say.

     

  • It was 2004, I was still peeing often, but nothing had worsened and it had become a way of life and something I rarely thought about. A work colleague turned to me and said, "Hi, Monty, have you heard about Peter?"  "No", I responded. He had different responsibilities to me and we rarely saw or spoke to each other. "He died last week.", I was told. "What happened" I asked. " Don't know, evidently he died due to prostate cancer" Came the answer.  The word "Cancer" took priority, the type at that time meant nothing.  Later we, as work colleagues, attended his funeral and learned he had had problems for some time, outwardly none of us had ever noticed any problems apart from the odd missed meeting, nor at that time were we insensitive enough to delve into finding out what the symptoms had been.

    Peter's death left vancancies on a few committees one of which I filled. On this Committee was Patricia.

    Patricia's story will be told later on her own blog, but to link her story to mine let me say that Patricia was from Sheffield and I was from Doncaster and our relationship was very business like. We met at meetings and went on our separate ways after them, there was little time for social chit chat and I had very little knowledge as to her home situation. In November 2006 after thirteen years of treatment for prostate cancer Patricia's husband sadly died.

    February 2007, my wife Ellen said she had been invited over the road to sample food. There lived an Asian family who had just had a celebration. My wife was Anglo-Indian and loved asian food. She was gone half an hour then returned and said she was going shopping. An hour later she returned, a little while later I heard her crying in the kitchen, I went to see what was wrong and she told me that she was feeling very concerned about her brother in Australia.

    We had known for some little time that his wife, Denise, had breast cancer and it was terminal, but a day or so earlier we had been told she had only days to live. Finding Ellen so much distressed I told her that if she wanted to go out there we would. Ellen declined because of her complete dislike of flying. A little later Ellen came to me and said she had developed indigestion and was going to lie down for a while. An hour later I went to see how she was. She told me that she still had the discomfort and so I asked if she wanted a doctor. Now Ellen several years previously had had kidney cancer and this had been found when she was being examined for some other totally unrelated ailment. So when ever she was feel unwell she would always see the doctor on the just in case basis. So I called the surgery and it was a case of we do not do home calls, if you are concerned dial 999. I wasn't that concerned but for Ellens peace of mind I dialed 999 and an ambulance arrived. 

    The crew did several tests on Ellen whilst she lay on the bed. They said they could do the tests better if she was in the ambulance, so they stretchered her out there, air mask and all. The look on my face must have said it all as the ambulance man said it is only routine. The ambualnce man asked me for her date of birth, I said 5th December 1945, Ellen took the mask off and said "Its the third" That was the last words I heard from her. Fifteen minutes in the ambulance and the crew said they would like to take her to hospital for further tests. They asked if I was coming in the ambulance. I said no I would come by car so that I could bring her back home. I followed the ambulance until the blue lights came on. It never dawned on me what was coming next. It wasn't until I reached the hospital that I was told Ellen was dead on arrival. My feelings in writing this now are very much the same as on the day it happened.  Ellen had recieved a clear of cholesteral report just weeks before but she died because furring of the arteries cut blood off from the brain.   Denise died two days later.

    Next week read what happened after Patricia rang to offer her condolences. or see www.prostatecancercheckitout.me.uk

  • In 2000 I developed a lump and a little soreness to my lower abdomen. On visiting my GP it was found to be a hernia. This was repaired and all was ok again until 2002. In 2002 I was suffering with some ailment, I forget what, but it resulted in me visiting my GP again. Having recieved a prescription for my problem I casually said, "Doctor while I am here ......"

    I lived thirty minutes drive away from where I worked. I had a wee before leaving home and another when I reached my work place. I found nothing wrong or troublesome about that, but if I had to travel further either for work or for personal reasons, half an hour into my journey I would want to be stopping. My belief was that I had started a habit and again I wasn't overly perturbed about it. Except I began to realise my nights were being intermittently disturbed as well, so as I was visiting my Doctor I thought I would raise the point. The doctor felt around my lower abdomen and gave me an internal examination (An embarrassing, but not painful finger up the rectum). His conclussion was that I had possibly another hearnia coming and he told me to return if the symptoms worsened. Thank you doctor. 

    If you are eager to hear more visit www.prostatecancercheckitout.me.uk, if not wait for my next instalment beginning 2004

     

  • I had another blood test before Christmas and my PSA has now reached 5.24. This has renewed my interest in the topic of PDT, PSA Doubling Time. As a computer geek of long standing I am well aware of how rapidly a number can get huge if you keep on doubling it. Take 2 and double it and you get 4. Double it ten times and you get 1024 - twenty times and you get over a million! So your PDT can give you a fair idea of how soon things could get serious. If you go to the site http://www.doubling-time.com/compute-PSA-doubling-time.php you can feed in your readings and it will calculate your PDT. Feeding in my September reading of 3.36 and my December reading of 5.24 gives a PDT of 4.67 months. My oncologist tells me they won't consider starting hormone treatment till my PSA rises above 20. The graph from the above site tells me that will occur by September this year. Meanwhile I have no symptoms and am getting on with life as normal. Did a great concert last night with Crouch End Festival Chorus of two really difficult pieces. Paul McGann (Dr Who No 8) was narrating for the second piece. It all went awesomely - what a terrific choir! My back's giving me a lot of trouble (not cancer related) so I'm going to see if I can sort that properly once and for all.

  • Me again. Had a great summer and am now much fitter and have lost over half a stone (deliberately!). The waterworks are getting a bit pathetic again so it may be time for another session of urethral dilation or catheterisation. I had a blood test on 6 September (the first since the end of radiotherapy) and, in spite of all hopes to the contrary, my PSA count is up (from 3.0 post-op to 3.6 now). No-one seems to have a sensible explanation for this but I can only assume the cancer is lurking somewhere biding its time. Next blood test is just before Christmas. I certainly have no symptoms and can't do much except get on with life and hope for the best. Gained a sixth grandchild over the summer and the software is going well so plenty to be cheerful about.

  • Well, that's it! My prostate has gone and I've had 33 sessions of radiotherapy, finished 11 days ago. Things got a bit worse after the treatment stopped and it still hurts a bit when I pee, but otherwise things are calming down nicely. And, wonder of wonders, my erections seem to be returning. I'm taking Cialis every other day and it is really beginning to pay off. He's still some way from his previous instant readiness for action but I'm beginning to believe he will make a full recovery. And my flow is fine in spite of stopping catheterising over three weeks ago. Glory be!

    So what's next? Well, not a lot I hope. The worry of course is that my PSA count won't show an improvement but it will be quite a while before I know. The next blood test is in about three months - it takes a while for things to settle so there is no point in doing it straight away. I'm very unfit - walking uphill is a bit of a struggle. However, we're off to the Alps for a week in July and then booked to do the first 100 miles of the Coast to Coast in August, so I need to get out there and do some regular walking. I'm also thinking of taking up Tai Chi - can't do any harm and it might help me avoid the regular back spasms.

    Otherwise I'm throwing myself into marketing my software package for school music administration. I'm probably not allowed to advertise but google Crozier Chorale if you're interested.

    May be a while before I'm on here again, so, if you've been with me on the journey, thanks for the company, and if you're following along behind on the same route, good luck and bon courage!

  • 23 radiotherapy sessions down and 10 to go.

    I'm getting to know the other prostate patients quite well now. The others seem to be on a different regime from me since for them radiotherapy is the primary treatment whereas mine is what is called adjuvant radiotherapy (from the Latin verb adjuvare - to help). They have all had hormone treatment first which starves some of the cancer cells of the testosterone they need to reproduce. This effectively doubles the effect of the radiotherapy. They have had experience of the hot flashes and night sweats that you get with hormone treatment. They get a slightly larger dose than me, 37 sessions rather than 33.

    With two weeks to go the side effects are beginning to get unpleasant. What seems to be happening is that the lining of the lower bowel is being damaged. This causes additional mucus to collect inside the rectum with (at the moment) an occasional trace of blood. The lining of the rectum must be swollen as well because it feels as if I need to go when I don't - apparently this is called proctitis. The net result of this is that it is not safe to fart any more because the wind tends to exit along with a certain amount of fluid. It is safer to pee sitting down in case of accidents. What is more, visits to the loo become extremely urgent if gas is trying to escape and I need a pee. My bottom is also getting rather sore but the aqueous cream has certainly come into its own now. I was using Savlon around the hole but have been told that both this and Anusol are highly discouraged, though I haven't discovered why.

    I am still self-catheterising every other day. Actually doing it doesn't really hurt but it takes longer and longer for things to calm down afterwards. I imagine that this is because of the effect of the radiation as well as the effect of pushing through the scarring around the neck of the bladder. Having a pee is often eye-wateringly uncomfortable. On a brighter note I have now had two sessions of complementary therapy, a back massage and a foot massage. Both were intensely pleasant experiences and it was hard to escape puritanical notions of guilt at enjoying them so much. Both sessions lasted about half an hour. The back massage was quite gentle, not at all like the sort of massage which the osteopath does, mostly a stroking motion but with a little bit of extra pressure down the sides of the spine. This experience was so pleasant that I immediately booked for the three more I am permitted. The second session was with a different therapist, an astonishingly attractive red-headed lady of Irish extraction with a deep, sexy voice. She persuaded me to try reflexology instead of massage - actually she could have talked me into anything although I was a bit worried that I might not have washed my feet thoroughly enough. I took my shoes off and lay on my back. She put a herbal pad over my eyes blocking out the light entirely and a drop of scented oil (mostly basil) on a pad on my chest. She then worked on each foot in turn stroking and kneading. The sensation created by massaging the tip of each toe was particularly intense. I relaxed completely and floated off to my favourite place overlooking the valley of the Swale in North Yorkshire. When I stood up again it was as if I was wearing particularly fluffy slippers - very odd.

     

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The prostate disease bloggers

Grahamn278 was referred to a urologist with a high PSA in 2008 and prostate cancer was confirmed

monty2011 knew there was a problem with his prostate when he started needing to go to the toilet more often

AgedTenor is 64, loves singing and geology, and was alerted to his prostate cancer by a raised PSA test

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Nothing in this blog should be taken as medical advice and the opinions expressed are personal, not those of the NHS. If you have any concerns about your health you should contact your GP or use our medical advice now section.

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