Visit to the BPC at The Priory to see Mr D.
Great news re the PSA test < 0.01 which is the lowest reading done by the lab. As a result of this I dont need another PSA test until 12 months post op. Basically I am now on annual PSA's, which makes sense as if a recurrence occurs its going to be over a year so why bother with the 3 monthly PSA's that the NHS do? At least I dont have to suffer the anguish of PSA anxiety every three or six months. So next PSA will be in 9 months time.
Completed the EPIC survey document and we went over the questions. Bit disappointed as I am amber for continence due to still using the occasional pad. Hopefully I will go green at the six month check up ( in 3 months time ). ( I have only used a pad for a long distance drive for work on the motorway )
ED, Mr D doesnt want me using Caverject or VED but instead to combine my existing Cialis with Muse once a week. He will write to GP to prescribe, not looking forward to this as apparently it can sting when you use it. We had a discussion around the interpretation of the term 'erection' on the questionaire as it is subjective - agreed my view that its where it is firm enough for penetrative intercourse - I am not there yet. But I am positive that within a year I will be there as he saved both neurovascular bundles, and Mr D seems confident also.
We talked about the upper back/arm pain and he wants me to get this sorted out - so do I. He will refer me to a consultant for shoulder and MRI if GP doesnt. I said i will speak to GP this week and get resolved.
The other pains should go away - including hopefully the abdomen pain - as i didnt have a lump at the spot he wasnt concerned at the moment. To be reviewed at the next visit in another 3 months.
More exercise will help with all these niggling pains.
So, great day really ...
... update - GP believes that the neck/arm pain has been caused by a trapped nerve - 3 hours+ in theatre and putting pressure on my neck will have resurfaced an old problem I had from about 20 years ago. GP also not happy to give me MUSE as I wasnt instructed in clinic. After two weeks of talking to GP and the local NHS hospital I have been prescribed 1 pellet of MUSE to trial the use. I then have to go back and discuss with GP. Makes you wonder why I bother !! Its wrong that we have to fight for our rights to have treatments. Also a highly qualified consultant urologist , one of the best in Europe recommends what I need and a local GP says no! Terrible situation.
Monday, 21 January 2013
Friday, 18 January 2013
3 months post op approaching.. ultra sensitive psa results due
Went and gave my blood test last week ready for my three month post operative meeting with consultant urologist. I have heard on support forums the expression 'PSA Anxiety' which is the fear and waiting for your results. Its especially hard after you have had surgery as you are hoping above all for an undetectable result as this means the big C has gone away. The theory is two tests after surgery , three months separating each , indicates the cancer has not persisted. That's the first goal. You then go for years of regular tests and as long as the PSA doesn't creep up and become detectable then there is no biochemical recurrence, that's the ultimate goal. The one that stays with you the rest of your life. The reason why the anxiety will always be there. But apparently it gets easier over time.
So Monday I go to The Priory and the beginning of the monitoring starts. Fingers crossed.
Apart from this how have I been. Climbs another Welsh mountain last Sunday. It gets easier. Also I need to lose weight. Have put to much on after the operation and I think its hampering my full recovery.
I have still got that pain in my abdomen still and back pains. Might speak to GP.
ED, well , natural erections are still non existent but I am taking the medication. I need to find out what BUPA can do and otherwise see GP next Thursday about NHS treatment. It comes free on the NHS as its a side effect of prostate cancer treatment. It could be anything up to years to sort this out. Have to stop myself getting depressed about this.
Continence shock.... I thought I had it all sorted out. Haven't worn a pad in a couple of weeks but I have been at home. Big work day today and I did over 7 hours driving and a 3 hours meeting. Have caught a cough and it started last night. Had a bit of stress incontinence last night. Thank god I wore a pad and dark suite today as I was coughing most of the day and leaking. Just found it really hard to control, especially in the car. Still Tena 2 for men did the job nicely. Also gave me real confidence when at work. Seems it might take time to develop the technique when I had a cough.. especially one of these violent winter ones. This is really unusual for me as I don't get colds.
Snow... the whole country is worried about snow today. I was up before 6am and drove 200 miles south , had a meeting and then drove the same back. Shattered . Now the weather man says we may have the same snow on Monday. Please no. This may jeapordise my visit for my results. Really hope not.
Will update the blog here when I have had my clinic visit next week.
Sunday, 30 December 2012
12 Weeks, 2 1/2 Months Post Open Prostatectomy Summitted Snowdon in North Wales
Today 30th December with some Scout Leader friends I took on the challenge of a 9 mile hike ( 14.6 km ) from Llanberis to summit Snowdon the highest mountain in Wales - with an ascent of over 1000 metres/3300 feet.
What made this more of a challenge is that I havent climbed a mountain of note since before my operation and also apart from some local walking for an hour or so I have only done the recommended abdominal exercises and pelvic floor.
In addition, this was no stroll in the park. I was kitted out in full winter mountain gear and had to carry my winter ruck sack with extra equipment.
Further more, it was the weather conditions were horrendous, with 60 mph winds and gusts higher. Ice and snow on the higher slopes, torrential rain and hail and snow. At one point our faces were being blasted by ice and hail. Wind was knocking us almost off our feet. But I and my friends made it. The summit was all ice and dangerously slippy in the high winds. You can see the steps up to the trig point in the photo below.
We started from the beginning of the path at 11am and got down at 4.30 pm in the dark. Most guide books say you can do it in 5-6 hours , we did it in roughly the same.
I was slow going up , it was really hard work, but i got to the summit station in 3 hours, shattered.
I could feel the operation - what I mean is that I could feel inside me whatever the surgeon had done. Suprisingly going down hill I had pain in my pelvis and spine - I had this pre-operation and thought it had gone. I do need to have this checked out.
When I got back to the car I sat down to change my boots and seemed to sit down too quickly and being low down in the car I felt some internal pain. This was around my abdomin and in particular in the same place lower right abdo where I have been having niggling pain since hospital.
All told it was a great day and to me proves that after this kind of surgery you can get back to normal, but it takes a bit of time.
A selection of photos from the day, including those from the summit station where I took a rest before heading down are shown below. All the snow and ice was above about 650 metres.
Friday, 21 December 2012
Christmas Wishes and looking forward to a great 2013
Just a big thankyou to all my supporters in 2012 and the doctors, nurses, medical and support teams who have looked after me from diagnosis, through treatment and now moving forward into the future. With all your help I have now a positive outlook in the future and looking forward to a healthy long life as a cancer survivor. Will post again in 2013 when I have my first post operative ultrasensitive PSA test - get the results on 21st Jan 2013 - will be looking for a score of less than 0.1 which will be the best Christmas / Birthday present I could wish for.
Special mentions :
Mr Alan Doherty (Urologist / Surgeon)
Zena ( his PA )
Birmingham Prostate Clinic and staff
Bupa Oncology Support team
Helen Kyle at HP Occupational Health
Linda Clark , my HP manager whose support has been fantastic
Julia Cheetham - Clinical Nurse Specialist at Royal Shrewsbury
Mr Lynn - urologist Royal Shrewsbury
My work friends at HP and in UK Defence
And all the Scout and Guide Leaders from around the UK and in particular Shropshire County Scouts who raised money at the County Ball for Prostate Cancer.
News on Snowdon - I am still hoping to ascend Snowdon this month but the weather has proved a problem with heavy rain and storms (high winds). Fingers crossed if weather improves I will have a go.
Special mentions :
Mr Alan Doherty (Urologist / Surgeon)
Zena ( his PA )
Birmingham Prostate Clinic and staff
Bupa Oncology Support team
Helen Kyle at HP Occupational Health
Linda Clark , my HP manager whose support has been fantastic
Julia Cheetham - Clinical Nurse Specialist at Royal Shrewsbury
Mr Lynn - urologist Royal Shrewsbury
My work friends at HP and in UK Defence
And all the Scout and Guide Leaders from around the UK and in particular Shropshire County Scouts who raised money at the County Ball for Prostate Cancer.
News on Snowdon - I am still hoping to ascend Snowdon this month but the weather has proved a problem with heavy rain and storms (high winds). Fingers crossed if weather improves I will have a go.
Tuesday, 18 December 2012
10 weeks post Open Radical Prostatectomy and looking good
Really looking forward to Christmas and 2013.
Now for the health update........
Arm has healed and no issue now though am not using under stress.
Scar is healing well fading near belly button though angry and red lower down.
Getting pain when stretching , in lower right abdomen seems to be same place I had pain post op.
Been sneezing a lot and this may have aggravated something inside - not the surgeons fault, the problems of winter and also we are cleaning the house ready for Christmas and I have a dust allergy!!
Keeping up with pelvic exercises.
Ok, its now 10 weeks since the operation under the skilled hands of Alan Doherty at the Birmingham Prostate Clinic ( The Priory Birmingham ). Everytime I think back at that time I am so thankful that he did the operation and has been looking after me. When you have this disease you have a lot of time on your hands to think and also with online forums , to talk with others who are on the same journey as yourself. And thats what makes me so thankful that I did the research, I educated myself, I was positive and chose the right guy to look after me.
Where does this confidence come from ? I read so many comments from people in the UK on ProstateCancerUK and Macmillan where people have been left with positive surgical margins, infections, with major incontinence issues and of course with the obligatory erective dysfunction. I am buoyed with the fact that Alan monitors all his patients and the outcomes are really positive.
My histology - margins all negative
My incontinence - one pad for minor stress incontinence ( to be honest - I am as continent as any woman now - you have to remember that following this surgery the male anaotomy is more inline with the female ).
My Infections - none to think of - slight burning - it should pass.
ED - will take time but that goes without saying for everyone - but he saved both neurovascular bundles whereas my NHS man was only going to attempt to save some on the left.
Continence is a big issue. See Urinary Incontinence Following Radical Prostatectomy - significantly this article says "....... in high-volume centres with a small number of surgeons, early post-prostatectomy continence rates are very high (91–98%)....." The Birmingham Prostate Clinic falls into this category. Incontinence is a major factor for me and other men, as it goes on to say "....Overall, incontinence after radical prostatectomy has a major influence on quality of life, physical activity and social wellbeing......"
So at 10 weeks I think I am doing fantastic.
Still taking the Ciallis 5mg a day - hoping things will swing into action .
Read a great article Post Operative Sexual Function following Radical Prostatectomy at the European Urological Review website. It is really worth reading for those who are interested in the side effects and impact on quality of life following this operation. Its also justification for the NHS medication that I am being prescribed, also it reminds me that I need to discuss with GP and Alan next steps in treatment and options. ( Though another patient of Alan's mailed me recently that his sparked into life 5 months post op ).
So am I still getting tired?
Walking is still tiring but its lack of fitness not the operation. I can see now why the benefits of being fit before you go into hospital is so important. As you tend to reduce your exercise levels during post op recovery you put on weight and become less fit. This seems to contribute to the tiredness , especially in the afternoon. Combine this effect with coping with being diagnosed with cancer, the stress of the decisions, the operation, the recovery, the side effects of surgery and then deciding on work .. All this combines to make you tired. Its so important to maintain a healthy lifestyle through recovery to combat this impact. The physio in the hospital tends to give you exercises for your abdomen and pelvis but doesnt go through a bigger fitness regime - maybe thats an improvement that could be suggested to the process of recovery for all patients. My big plans to climb Snowdon this month or a mountain of equivalent stature may have been over optimistic. We will see, I am still confident I will have a go at this before the year ends.
Christmas is nearly here and its time to put on cheery face and have a good holiday period. Have put to the back of my mind the anxiety of the fact that though I have a job, being away for a time means I have no role so it will be something new for me back at work in Jan 2013.
Also, January is a big month - it will be the first ultra sensitive PSA test following my operation. Will have the blood test around 9th Jan and then go see Alan at the clinic on 21st Jan. Hoping for a result of less than 0.1, 0.02 would be a fabulous result as would 0.05, figures that I see a lot of other people who have had the op and have been monitored for a number of years. This would hopefully indicate that there is no 'persistence' ie some cancer cells have been left behind . Would then be just monitoring for 'recurrence' over the next 10 to 15 years.
Have a happy holiday everyone - here's lookign forward to a better 2013 than 2012.
Now for the health update........
Arm has healed and no issue now though am not using under stress.
Scar is healing well fading near belly button though angry and red lower down.
Getting pain when stretching , in lower right abdomen seems to be same place I had pain post op.
Been sneezing a lot and this may have aggravated something inside - not the surgeons fault, the problems of winter and also we are cleaning the house ready for Christmas and I have a dust allergy!!
Keeping up with pelvic exercises.
Ok, its now 10 weeks since the operation under the skilled hands of Alan Doherty at the Birmingham Prostate Clinic ( The Priory Birmingham ). Everytime I think back at that time I am so thankful that he did the operation and has been looking after me. When you have this disease you have a lot of time on your hands to think and also with online forums , to talk with others who are on the same journey as yourself. And thats what makes me so thankful that I did the research, I educated myself, I was positive and chose the right guy to look after me.
Where does this confidence come from ? I read so many comments from people in the UK on ProstateCancerUK and Macmillan where people have been left with positive surgical margins, infections, with major incontinence issues and of course with the obligatory erective dysfunction. I am buoyed with the fact that Alan monitors all his patients and the outcomes are really positive.
My histology - margins all negative
My incontinence - one pad for minor stress incontinence ( to be honest - I am as continent as any woman now - you have to remember that following this surgery the male anaotomy is more inline with the female ).
My Infections - none to think of - slight burning - it should pass.
ED - will take time but that goes without saying for everyone - but he saved both neurovascular bundles whereas my NHS man was only going to attempt to save some on the left.
Continence is a big issue. See Urinary Incontinence Following Radical Prostatectomy - significantly this article says "....... in high-volume centres with a small number of surgeons, early post-prostatectomy continence rates are very high (91–98%)....." The Birmingham Prostate Clinic falls into this category. Incontinence is a major factor for me and other men, as it goes on to say "....Overall, incontinence after radical prostatectomy has a major influence on quality of life, physical activity and social wellbeing......"
So at 10 weeks I think I am doing fantastic.
Still taking the Ciallis 5mg a day - hoping things will swing into action .
Read a great article Post Operative Sexual Function following Radical Prostatectomy at the European Urological Review website. It is really worth reading for those who are interested in the side effects and impact on quality of life following this operation. Its also justification for the NHS medication that I am being prescribed, also it reminds me that I need to discuss with GP and Alan next steps in treatment and options. ( Though another patient of Alan's mailed me recently that his sparked into life 5 months post op ).
So am I still getting tired?
Walking is still tiring but its lack of fitness not the operation. I can see now why the benefits of being fit before you go into hospital is so important. As you tend to reduce your exercise levels during post op recovery you put on weight and become less fit. This seems to contribute to the tiredness , especially in the afternoon. Combine this effect with coping with being diagnosed with cancer, the stress of the decisions, the operation, the recovery, the side effects of surgery and then deciding on work .. All this combines to make you tired. Its so important to maintain a healthy lifestyle through recovery to combat this impact. The physio in the hospital tends to give you exercises for your abdomen and pelvis but doesnt go through a bigger fitness regime - maybe thats an improvement that could be suggested to the process of recovery for all patients. My big plans to climb Snowdon this month or a mountain of equivalent stature may have been over optimistic. We will see, I am still confident I will have a go at this before the year ends.
Christmas is nearly here and its time to put on cheery face and have a good holiday period. Have put to the back of my mind the anxiety of the fact that though I have a job, being away for a time means I have no role so it will be something new for me back at work in Jan 2013.
Also, January is a big month - it will be the first ultra sensitive PSA test following my operation. Will have the blood test around 9th Jan and then go see Alan at the clinic on 21st Jan. Hoping for a result of less than 0.1, 0.02 would be a fabulous result as would 0.05, figures that I see a lot of other people who have had the op and have been monitored for a number of years. This would hopefully indicate that there is no 'persistence' ie some cancer cells have been left behind . Would then be just monitoring for 'recurrence' over the next 10 to 15 years.
Have a happy holiday everyone - here's lookign forward to a better 2013 than 2012.
Tuesday, 11 December 2012
9 Weeks Post Surgery, Christmas Approaching
Well its been 9 weeks and good progress is being made.
The arm seems to now be settling down with the rest its had and isnt playing me up as much. No ibuprofen needed. Has meant I can now exercise more.
Continence - controlling this really well, so much that yesterday I tried goign all day without a pad with only a slight problem with a couple of sneezes. Being at home it was no great deal. However today as i was in and out of the house I decided a pad was needed for comfort. I am now going all night without a pad though which is really great. Also, sleeping a lot better and only getting up once during the night to use the loo. Can also drink until going to bed without worrying.
Penile burning sensation and occasional flow issue? I am getting a burning sensation in my uretha, will have to see what the consultant says when I go back in january. If it carries on over Christmas I may drop a urine sample in to the GP to make sure I havent picked up some kind of infection. Though this could be related to the BPH and Prostatitis that showed up on the pathology report.
ED - still no erections that would be good enough for penetrative sex but this is to be expected. A member of one of the support forums who had the same op and surgeon as myself said it took 5 months for him and then he woke up with a morning one. So time will tell. Blood flow is there and the 5mg of Cialis that I have been prescribed daily may well be working. Lot of guys use VEDs and others use Caverjet injections .
More exercise and less use of ibuprofen is exposing the healing pains more. Also when stretching I am still getting a niggling pain in the lower right abdomin. This is the same place that i have been getting the pain since the operation and when the drain was taken out. Weird. It is the worst of any of the internal pains and I would have thought it would have gone by now. Hopefully I havent pulled anything.
Task this week was to renew my Bupa membership , have done this to make sure I am covered for the next years treatments\monitoring.
Time to put up the Christmas lights and decorations. To save driving ordered the tree online.
Spoken with work today and had my annual review. Went ok. Going back on 2nd Jan 2013 - gonna take it easy and get fitter before I go back. I may not be in the office but lots going on to prepare for 2013 and work.
The arm seems to now be settling down with the rest its had and isnt playing me up as much. No ibuprofen needed. Has meant I can now exercise more.
Continence - controlling this really well, so much that yesterday I tried goign all day without a pad with only a slight problem with a couple of sneezes. Being at home it was no great deal. However today as i was in and out of the house I decided a pad was needed for comfort. I am now going all night without a pad though which is really great. Also, sleeping a lot better and only getting up once during the night to use the loo. Can also drink until going to bed without worrying.
Penile burning sensation and occasional flow issue? I am getting a burning sensation in my uretha, will have to see what the consultant says when I go back in january. If it carries on over Christmas I may drop a urine sample in to the GP to make sure I havent picked up some kind of infection. Though this could be related to the BPH and Prostatitis that showed up on the pathology report.
ED - still no erections that would be good enough for penetrative sex but this is to be expected. A member of one of the support forums who had the same op and surgeon as myself said it took 5 months for him and then he woke up with a morning one. So time will tell. Blood flow is there and the 5mg of Cialis that I have been prescribed daily may well be working. Lot of guys use VEDs and others use Caverjet injections .
More exercise and less use of ibuprofen is exposing the healing pains more. Also when stretching I am still getting a niggling pain in the lower right abdomin. This is the same place that i have been getting the pain since the operation and when the drain was taken out. Weird. It is the worst of any of the internal pains and I would have thought it would have gone by now. Hopefully I havent pulled anything.
Task this week was to renew my Bupa membership , have done this to make sure I am covered for the next years treatments\monitoring.
Time to put up the Christmas lights and decorations. To save driving ordered the tree online.
Spoken with work today and had my annual review. Went ok. Going back on 2nd Jan 2013 - gonna take it easy and get fitter before I go back. I may not be in the office but lots going on to prepare for 2013 and work.
Monday, 3 December 2012
8 Weeks since surgery - getting better
Well following a traumatic week last week the weekend seems to have settled things. No change on the ED front from last week - still early days. Having the note for work and a renewal of my prescription calmed me down. Can see why I am normally on high blood pressure tablets - 'dont panic ... calm down' -:) Must remember to write the letter to the GP for the december renewal before Christnmas as they need 4 days to do a prescription!!!!! A whole week of my life seemed to pass last week due to the stress of a simple Med 3 form and a prescription renewal.
Continence - am really happy with this - dont have to wear a pad at night in bed. I suppose I could get away with not wearing one during the day at home but the occasional leak is a concern. Being paranoid about cleanliness I dont want to walk around smelling of urine and the benefit of the pad is that they are odour eaters, so the occasional dribble wont smell. What the hell, for £2.50 a box and a box lasts a 12 days then I am not bothered. It gives peace of mind. Must say, I forgot to do a pelvic 'squeeze' when I got out of the car after walking up and down The Wrekin and wet myself - the Tena's saved the day .. does make me laugh when it happens. Wearing Tena for Men pads really does give you the confidence to be out and about.
Left arm isnt as bad this week, but still gives me grief especially when tryign to sleep. The ibuprofen and paracetamol are doing the job. I think its just a question of time healing and not overdoing things with it so the mscles have time to rest.
Lower back pain is on and off - live with it! Does it have any significance with occasional burning feeling when urinating? This should have gone now the prostate has been removed - BPH etc. One to monitor I think. After all the issues with the GP last week , do I want to book and appt to have a breast lump checked? May leave it a while . Am sure its getting slightly larger and there is a small one growing next to the existing one. Cysts probably.
Did more in house and in the garden over weekend and streched a bit more. I know my limitations as I could feel the pressure I was putting on my insides. Also walking down hill on the Wrekin really did put pressure on insides as I was sore again that night. I suppose it will take time. Need to see if i can wear a rucksack and see what difference it makes.
Sneezing again as the house is being prepared for christmas. Played havoc again with the right hand side lower abdomin. Funny thing is its that same place I had the problem in hospital and when I came out. Its always the same place . Will see if I still have pain there end of January when I see Mr Doherty.
A friend over in Llanberis, Mountain leader and author, has volunteered to go up Snowdon with me over Christmas \ New Year to make sure I get up and down safely. With all the weather it will be ice axes and crampons. Really want to do this to show that even just over 2 months after this kind of surgery its possible. Paul has also said he will look after me on a trip up Moel Eilio for the Winter Solstice - its a 726 metre climb above Llanberis but to help as I am not as fit they can get me 200 metres higher up to start. Lets see how things go - I get very tired just going for a walk up The Wrekin - dont know how I would cope with Wales.
Continence - am really happy with this - dont have to wear a pad at night in bed. I suppose I could get away with not wearing one during the day at home but the occasional leak is a concern. Being paranoid about cleanliness I dont want to walk around smelling of urine and the benefit of the pad is that they are odour eaters, so the occasional dribble wont smell. What the hell, for £2.50 a box and a box lasts a 12 days then I am not bothered. It gives peace of mind. Must say, I forgot to do a pelvic 'squeeze' when I got out of the car after walking up and down The Wrekin and wet myself - the Tena's saved the day .. does make me laugh when it happens. Wearing Tena for Men pads really does give you the confidence to be out and about.
Left arm isnt as bad this week, but still gives me grief especially when tryign to sleep. The ibuprofen and paracetamol are doing the job. I think its just a question of time healing and not overdoing things with it so the mscles have time to rest.
Lower back pain is on and off - live with it! Does it have any significance with occasional burning feeling when urinating? This should have gone now the prostate has been removed - BPH etc. One to monitor I think. After all the issues with the GP last week , do I want to book and appt to have a breast lump checked? May leave it a while . Am sure its getting slightly larger and there is a small one growing next to the existing one. Cysts probably.
Did more in house and in the garden over weekend and streched a bit more. I know my limitations as I could feel the pressure I was putting on my insides. Also walking down hill on the Wrekin really did put pressure on insides as I was sore again that night. I suppose it will take time. Need to see if i can wear a rucksack and see what difference it makes.
Sneezing again as the house is being prepared for christmas. Played havoc again with the right hand side lower abdomin. Funny thing is its that same place I had the problem in hospital and when I came out. Its always the same place . Will see if I still have pain there end of January when I see Mr Doherty.
A friend over in Llanberis, Mountain leader and author, has volunteered to go up Snowdon with me over Christmas \ New Year to make sure I get up and down safely. With all the weather it will be ice axes and crampons. Really want to do this to show that even just over 2 months after this kind of surgery its possible. Paul has also said he will look after me on a trip up Moel Eilio for the Winter Solstice - its a 726 metre climb above Llanberis but to help as I am not as fit they can get me 200 metres higher up to start. Lets see how things go - I get very tired just going for a walk up The Wrekin - dont know how I would cope with Wales.
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