7 weeks post Op and now getting NHS\GP Stressed!!

It’s now 7 weeks since the operation, 6 weeks since my hospital release and just under that since the catheter was removed at the TWOC.

Perineum pain is still here, grows on me when driving or after walking or standing for a while. Rest seems to calm it down – the pain is more of a burning sensation. It is also aggravated when I do my pelvic floor (kegel) exercises, which I must keep up each day. These exercises are keeping me at between 1 and 2 incontinence pads a day. I say between 1 and 2, its only 1 pad when I reduce my fluid intake and reduce exercise, I have been drinking less than 2 litres and more like 1 litre a day. I am working this week on increasing fluid intake back up to over 3 litres a day (my correct intake) and will be starting a new exercise regime.

Am still suffering from the left arm pain that was diagnosed at the ultrasound as muscular. This has restricted my exercise ability. Ran out of the naproxen tablets the GP had prescribed and have had problems getting in touch with my GP so have gone back to 400mg ibuprofen 2 to three times a day. This seems also to be helping with lower back pain that I have and also some upper back pain. The upper I assume to be posture as I have been sitting too much. The lower back pain is the same pain I had pre operation for a couple of months. If this stays I will ask the consultant about it in January. Hopefully exercise will help.

Internally I am still having the healing pains – especially when any pressure is placed on my abdomen through sitting in the car, going up and down stairs or stretching. Been sneezing again this week and the towel has had to come out again to apply as a pressure pad in my abdomen. Lower right gives the same severe pain I had post op and when I left hospital. I had hoped it had got better but it has come back again.  Time can only heal all of this. Early days I think, but another reason why I am not back at work or doing long distance driving.

Erectile dysfunction - no change since I started on the 5mg daily Tadalafil (Ciailis) - increased blood flow and can get engorged but not sufficient for any form of penetrative intercourse. Can feel the expansion and nerve sensations I assume due to the blood flow and the drugs relaxing the muscles. Studies say that this might be the case for anything up to 2 years - longer if I am unfortunate. Maybe things will be better with both nerve bundles saved. This blood flow induced by the drugs helps the nerves recover and I believe will help prevent atrophy  -  celluar death! ( More about this on a later blog )  - Quality of Life is a major concern for me and there is a very good medical article that covers this ... "post-surgical quality of life is becoming a greater concern for patients seeking treatment for prostate cancer in the era of early detection" 

 See - Penile Rehabilitation After Radical Prostatectomy: Important Therapy or Wishful Thinking? 

Getting very tired by mid-day, need to nap\sleep – really need to get some more exercise done I think to help get me fitter – maybe this will combat the tiredness. Have bought a Pilates beginners DVD on Amazon which should be here Thursday and can start to do those exercises in the house. -  Thanks to Helen at Occupational Health who has recommended I try this.

Lots of stress this week which has not helped. Spoke to work and told them I would sort out a new ‘fit note’ – the one the GP had given me previously was only for a month.  My ‘fit note’ for work ran out on Sunday, also the tablets for blood flow and to combat atrophy as part of penile rehabilitation run out Wednesday so I contacted my GP surgery Monday morning at 8.30 am. Was told to phone at 11 am. Phoned then and gave them all the details, including the pain details above and asked for a GP phone back. Nothing happened to I phoned at 3am. At 3am they told me the Dr would call back later that day but then told me for the prescription renewal I had to take a letter in. Too late for today so I said I would do it next day. Waited all afternoon into evening and didn’t get a GP call. That’s when I decided to self-medicate with the ibuprofen. Sent an email to work to tell them the position.

Following day, phoned surgery at 11am and told to phone after 3pm as the GP’s pass the paperwork out to reception after lunch and the note would be there then. Drove to GP’s and dropped in a letter for the repeat tadalafil prescription. At 3.40pm I phoned the surgery. No note for me and my GP was no longer at the surgery. Lovely girl on the phone said she would put a note in the GP’s in tray to have it dealt with the next day. She told me I needed to phone back after 3pm the following day. Did explain that this would now be 3 days since my first request – nothing she could so – not work getting worked up about, so I was really calm with her on the phone – but my blood was boiling when I put the phone down. If I worked like this I would be out of a job. This is why this week I have increased my premiums on my private health care with Bupa. I need to make sure I am covered every way so I don’t have to rely on the NHS. I pay a fortune each month for NHS services in my tax\NI and this is the service I get. Another reason why for years I didn’t get sick!!!!!!

6 Weeks Post Op ( Open Radical Prostatectomy ) progress report

Well its now been six weeks since the operation and I am still recuperating at home.
Started to drive my car on short journeys. I did think everything was ok, I live down a potholed country lane so its quite violent and bumpy driving down it. I got over the shock of the bumps but have found that doing this a couple of times, together with driving and then sitting around or walking around causes the burning \ soreness inside where the district nurse a few ago ago described as the area where the prostate was removed - internally in the perineum area. Sunday I went to a scout workshop\presentation day at a  local school , 10 mins drive away. Spent most of the day ( 9am to 3.30 pm ) sat down on different chairs , by the afternoon this burning had surfaced.

In addition to the discomfort of the burning, I now seem to be getting more and more what I would call 'healing' pain. This pain feels like where maybe I have been stitched inside. These discomfort pains are across the abdomen rather than down and are internal. Still getting a sharp pain when i cough or sneeze internally on the right side above the groin area - have had this since the operation , suppose it will go over time.

Lots of these pains are occurring with the extra movement I am doing in trying to exercise and also with sitting driving or in upright chairs. Maybe I am pushing down on the internals .. I dont know. Will just have to wait and see.

Sunday's day out also proved I really wont be ready for work yet. By lunch break I was tired, by 3pm I was shattered and nearly out on my feet but hadn’t actually done anything! When I got home I fell asleep. Could be the Anaemia that I was told I have post op due to the blood loss. Need to ask the GP how long I need to take the iron tablets for and maybe get my blood levels checked.

The arm pain is still here - going to have to get on with it and see what happens. Will update the GP next week if no improvement and see if anything can be done - maybe some light physio will help.

As the nurse in the hospital told me - "your body will tell you to slow down - pay attention to it ... " Well yes I am.

Am definitely not yet ready for work and all it entails. Still early days.

Great conversation with my NHS Clinical Nurse today who again told me to call her anytime for advice. She has asked if I can get copies of my consultants letters to the GP sent to her for my NHS Hospital records. She has left an appointment in the NHS diary for August 2013 as this would be a year post my last visit to their cancer service. She has agreed that from an erectile dysfunction point of view, keep taking the Cialis as prescribed by the GP and recommended by Mr Doherty ( this is the NHS NICE Pathway recommendation and what Shropshire recommend in my case ) - it helps with atrophy. She told me not to worry about the other aspects of the male reproductive system - its more important to allow the healing.

Saw a very worrying post on prostate cancer uk forum today - one chap like me living in Oxfordshire has been refused his ED medication as the PCT in that area has now down graded to Low Priority erectile dysfunction and these treatments on costs grounds. Absolute scandal. Its worrying enough having cancer and then the treatment, but to now have to worry that the local NHS may refuse to supply treatment for the side effects of the cancer treatment is awful.

What these pencil pushers don’t realize is the anxiety of ED and its impact on your quality of life. Furthermore, when people such as myself and others chose our cancer treatment it was on the basis that NICE , NHS and Medical Experts told you that the side effects would be treated. On balance , if we had known they would not then a different cancer treatment may have been chosen. Just got to hope that Shropshire don't go the way of Oxfordshire

Fabulous news for my surgeon/urologist Mr Alan Doherty and the Birmingham Prostate Clinic. He received a Highly Commended ( runner up ) in the HSJ Awards 2012 for Enhancing Care with Data and Information Management. He was beaten to first place by an NHS London system that could be rolled out national but still finished above other systems from:

Barts Health Trust
East Midlands Ambulance Service Trust, National Ambulance Clinical Quality and Research Groups and University of Lincoln
NHS North West London
North of England Cardiovascular Network and Digital Spark Ltd
The Royal Marsden and McKesson

Am really glad that I have the benefit of being part of this innovation in patient outcome management..

Start of a new Journey in Life, my Prostate Cancer Story : 5 weeks since surgery - Reflections on my Future

Start of a new Journey in Life, my Prostate Cancer Story : 5 weeks since surgery - Reflections on my Future: Its been five weeks since surgery now and I have been thinking a lot about what has happened and my life ahead.  The pain in the arm hasnt...

5 weeks since surgery - Reflections on my Future

Its been five weeks since surgery now and I have been thinking a lot about what has happened and my life ahead. 

The pain in the arm hasnt gone away and thats getting me down. The ultrasound on monday said it was a muscular problem. How this happened I havent a clue as about the only thing I have lifted with that arm is a cup of coffee or pint glass of water. Going to have to muddle on then and see if it clears; its not as bad as two weeks ago, but its causing me real problems driving and I cant see me doing an 8 hour daily drive and 5 to six hours of work in the south with it like this; but then am still not happy with continence and internally I still have pains - though these are niggling healing ones I think. Problem with driving is that sitting for so long hurts internally and especially when I get out of the car and stretch. Also, am starting to walk at normal speed - this is also causing 'healing pain' - then - No Pain No Gain they say !

Back to my opening remark, have started to question did I make the right decision; it keeps going through my mind and I keep telling myself I did. I could never have lived knowing that cancer was growing inside me, but this life ahead is going to be a challenge to get used to.

I dont think people who have not had the experience really understand what myself and others are going through. I know each day I am having to pick my chin up and put a smile on my face when inside I really dont feel like smiling. I suppose I can recover quickly from the physical side of things but mentallly this is going to take a long time and I dont know if I will ever recover.

People read books and kindles -:) I tend to read a lot onine. I love the NY Times and they have had great coverage on the topic of Prostate Cancer. Read the other night an article on the side effects that has really hit home with me   The Side Effects? Well, There Is One...
 
Am really concerned that I am at the start of my new journey, a journey of revovery from cancer that will need to cope with the effects of incontinence and ED. I think now in my 50's I will be able to cope with stress continence - ok am going to wet myself sometime and will have to face the fact that it might happen in public. I can live with using pads for those important public facing days to save the embarrassment.  But when I get older , in my 60s and 70s, if I live that long, hopefully it wont get worse and I wont smell like a urinal and be an embarrassement to those around me.

An then there is the ED side of things; dont know how I can write about what I am feeling about this yet as its still early days. Yes, Dead men Don't have Sex - I read the book - but the feelings and changes that you experience are more than just this. You dont get to know about these feelings and changes until after the treatment and then its too late to turn back the clock. Have i made the right decision, if I live another 20 years until I am in my 70's can i survive those years with these feelings - would I have been better to not have had the treatment and risked the cancer spreading - I dont know, will have to see how it goes.

"...........Jonathon Alsop, 53, a Boston wine writer, said his surgeon, Dr. Sanda, prepared him for sexual side effects, but nine months after surgery, he sometimes felt like a teenager.
“I never know what my body is going to do from moment to moment, and when I do have sex, I’m pretty sure I’m doing it wrong,” he said. “I try to have a sense of humor about it.”.............."

I wish i could just feel like that teenager ... maybe next month or next year ...

For now, its time to physically heal and look toward my first post op PSA test at the end of January 2013 - should be less than 0.1 .....

Sneezing, Driving, Walking

Apart from the left arm problem that hasn't gone away , its four and a half weeks since surgery and the scar it healing well on the outside.

Internally things are still healing, I know this as I have the sneeze test. Not that I have a cold but I sneeze a few times a day and still have to compress my stomach or push my fist into my abdomen on the right side to prevent the pain I still get internally from this bodily action. Drove the car yesterday, just a short journey and luckily I wasn't right behind someone as I sneezed and it caused me to take my feet of the pedals and a hand from the steering wheel.

Went for a walk up the Wrekin Hill in Shropshire. A gentle walk that I can normally do up and down in 45 mins. This took 2 hours and as I didn't push it it didn't seem to be a big work out. However when home I was shattered and then today 24hours later I was aching, obviously walking up hill had put a strain that I hadn't felt.  The walking is strengthening my pelvic floor muscles and helping with continence.

Don't think I am the yet for a full day working or longer driving or working away from home. Though I feel better as each day progresses.

Need to resolve the arm issue this week.
Also BUPA support nurse is phoning Monday or Tuesday as I want some advice from them re post op side effect treatment . Its confusing going private as people on NHS seem to have a different support process. Need to clarify a few things. You do get that feeling that you are all alone.. especially when you live in the countryside . Must not get depressed. Things are on the up.

Oh... put my path results into the nanogram for probability of cure and reoccurrence ... should be all clear for 10 years , 98% certainty, however that puts me at 62 years. If I get a reoccurrence in my 60's well salvage radiotherapy is the route.

May be getting paranoid , but with first degree , mother having breast cancer, sister dying at 49 of breast cancer , thoughts have strayed to the brca genes and thoughts of was this the reason I got prostate cancer and am I also at risk of breast cancer. A worry for another day.  Need gp to give me piece of mind about the lumps she said were benign cysts beginning of this year, just to confirm that's what they really are.

Side Effects from Surgery - Stress Incontinence, Cialis, ED & Climacturia

Well bit of a surprise this week. As last weeks entry said i started on the 5mg Cialis each day. In all the white papers and the discussions with medical people I have had it explained to me the impotence side of things and also the fact that any orgasm would be dry - with or without an erection. Bit of a shock therefore this week when during 'penile rehabilitation'  ( see article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1751036/ ) a copious amount of fluid was expelled.

Have done some research it seems that during the process the pelvic floor relaxes and this results in fluid release from the bladder into the urethra and that's what is expelled. No one had warned me of this. Apparently its called Climacturia and its quite common after the surgery I have had and also more common when suffering from Stress Incontinence - again something I am coming to terms with - a reason why I am wearing a pad to combat the occasional leakage.  See short article http://www.ncbi.nlm.nih.gov/pubmed/17509325

So it looks like I have something else to think about. Big learning curve . It does make you think is ED actually worth the bother and stress of it all. At least the cancer has gone. Gets you down thinking through it all. Do wish I could wind the clock back but it wouldn't have made any difference I suppose, I would still have been hit with this disease.

Some of the main points from the US paper on penile rehabilitation that are applicable to myself - especially as I have been put on a PD-5 inhibitor, the main article linked above goes into more detail and something that's quite frightening is the inference of cellular degeneration and the fact that the cells do not repair or re-grow. Its a male thing I think, especially when you are still young - people keep telling me I am still young in terms of this disease I contracted - blokes just have a fascination with the size of their manhood and the threat that it will waste away and get even smaller post operation is something to worry about:

Extract ...

The practice of “penile rehabilitation” to improve sexual function after radical prostatectomy continues to generate increasing interest among clinicians. Although the reported incidence of erectile dysfunction after nerve-sparing radical prostatectomy varies in the literature from 30% to 80%, most will agree that post-surgical quality of life is becoming a greater concern for patients seeking treatment for prostate cancer in the era of early detection.

• Patients are typically counseled that it may take up to 2 years for return of maximum sexual funtion after radical prostatectomy.
• Although the relative hypoxia thought to be associated with penile flaccidity may contribute to erectile dysfunction after radical prostatectomy, the etiology of post-prostatectomy erectile dysfunction appears to be multifactorial and is incompletely understood.
• Several studies have been performed to evaluate the effect of artificially induced erection after surgery to prevent permanent damage, with modalities including prostaglandin E1 injection, vacuum constriction devices (VCD), and phosphodiesterase type 5 (PDE-5) inhibitors.
• The limited data regarding intracavernosal injections suggest that an increased percentage of treated patients experience a return of natural erections compared with patients who receive no treatment.
• Although it is not certain that the early use of VCD will improve overall return of erectile function, data suggest that fibrotic changes leading to penile shortening and possible venous leakage might be minimized.
• The global improvement in endothelial cell function observed with chronic sildenafil treatment suggests a possible role for PDE-5 inhibition even during the period of neuropraxia after nerve-sparing radical prostatectomy.

A new week - still having pain in left arm - Erectile Dysfunction worries starting

Monday has arrived, a week since I developed pain in my left arm. Been taking the Naproxen 500 mg twice a day that the GP prescribed on friday. It has lessened the pain slightly - I think, but it has not gone away , still there.

This is so annoying as this is the arm I need to drive. As I type this blog my left hand fingers feel slightly funny as well. Maybe the nsaid is working and things will get better.

Phone the GP in the morning and left a message as she had asked on friday to say the drugs dont seem to be working . You have to leave messages at my GP practise, you never get straight through to a doctor. They get the duty doctor or your own, if free, to phone back later in the day. It a really busy practise so i have to live with this - one of the reasons for over 9 years I hardly ever bothered getting in touch with my doctor and relied on not being ill or periodic Bupa health checks. ( Note to myself .. lump in breast and a new one developing ... may need to get this checked .. private not NHS )

Just after 4pm I got the phone call back from my GP. Told her that the pain was still there. Said I would persevere for the week and see how things get on. Again I re-iterated to her that this was the arm that I use for changing gear in the car - may impact my recovery , especially for work as I do thousands of business miles and often drive 1 to 2000 business miles in a week, on top of meetings and presentations to clients. She was ok with this. She didnt even mention the referral that she had mentioned on friday.

I had asked her last week about a referral to the local Erectile Dysfunction service - havent a clue whether we have one in this area of Shropshire.

Her view at the moment was that we would leave things as they are as she had prescribed the 5mg daily Cialis as Mr Doherty had advised. I was ok with that for the moment. Yes there are stirrings but normal or even near normal facilities are not restored in that area.

To be honest, I want my arm sorted. Though last night I was reading a white paper on penile recovery and this does concern me that there doesnt seem to be a specialst service here where I live.  Makes me wonder does my female GP really understand how a man of 52 feels about this side of his health - after all , am not an 80 year old! Most people on the Prostate Cancer UK forum as well as drug rehab are also using vaccum devices prescribed on the NHS arranged through specialist nurses who deal with ED or through a dedicated ED service. Does my GP practise have experience in this area? I dont know. I did mention that the prescription for the 5mg wasnt a repeat one. GP said lets wait and see how it goes. So in a couple of weeks i will have to phone again for more!

There is a fabulous website with real patient exeperiences that goes into frank detail on erectile dysfunction,  Lots of people on Prostate Cancer UK and MacMillan Cancer Care follow this site. It doesnt mince its words, but no one should as this is a serious, life impacting side efect of prostate cancer treatment. I would advise anyone to read the detail here. Also, a wife has done an article that really hits home, its puts sex into perspective against survival and love and two people being able to share their life togther  - worth a read http://www.yananow.org/WhatSex.htm

My next visit with BPC and Mr Doherty isnt until 21st January - 3 months seems such an eternity with arm problems and erectile problems. At least the continence is ok apart from a bit of stress leakage. Might make a phone call to the oncology support service at Bupa and get a bit of advice from them.

Update ... Tuesday 6th Nov .. Alan Doherty phoned me at home and went through the problems I have been having. If the arm problem doesnt clear by friday he will schedule an MRI to see whats happened and how it can be sorted out.

Not a very good week recovery wise - mysterious arm pain

Well this week should have been so good after the report last week on histology.

However, having sat and watched too much TV on sunday and monday maybe I was being paid back for my laziness.

Monday evening I got an excrutiating pain in my left arm. It was so bad I couldnt sleep at night. Started to panic during the evening thinking a clot had moved into my arm - the dangers of Dr Google  - or not maybe?

Anyway, having suffered all night I managed to get an appointment at my GP surgery. I know the hospital discharge notes said I should phone the hospital or A&E, but I dont like doding this as its as if you are moaning at the slightest thing.

OH ( wife ) gave me a lift to the doctors and I saw my GP. We tried everything , extending arm, lifting bending, moving neck etc In the end she thought it a  bit of a mystery and told me to take ibuprofen. We didnt have a conversation about the fact that this was the same arm that they used during the operation to put the IV's into me.

Back home and taking 400mg ibuprofen 3 times a day - did nothing. By thursday it was really bad again, this time the pain not just in the top but also the forearm. I also took my watch from my wrist as I thought this might be constricting it but it wasnt. Phoned GP thursday morning and they said at the practise she would phone me back. Must have been busy as I got no phone call. Decided to send an email to the consultants practise - maybe they could advise.

Thursday evening, to bed by midnight, but couldnt sleep. All night I couldnt get in any position where the arm wasnt hurting me.

Friday day time rang the GP's practise and the doctor phoned me back. We went through all the symptoms but still couldnt fathom the problem. She said she could prescribe stronger nsaid's - but what would the point be if we didnt know what the problem was. As I am typing this I am still getting the pain and also getting some kind of sensation in my hand and fingers. Doctor asked me to take BP in both arms and she would phone me back later.

Will have to see what happens. Might end up going back onto my pain relief meds over the weekend to give some kind of releif from all of this.

There was an interesting comment on the ProstateCancerUk forum from an ex theatre nurse who said she thought it might well be down to the position I was lying in during the operation. Could be that it has caused a strain. A guy on there had similar problems with his leg and it took a couple of years to iron itself out. Hope to god that aint gonna be me. At the moment if this doesnt clear up, I wont be able to drive as this is the arm I use for changing gear.

GP phoned back in the afternoon. BP in both arms was roughly the same. Interesting aspect of the pain, when the BP squeezes my upper arm taking the reading the pain in my arm is awful. GP said she would prescribe me Naproxen 500 mg to take twice daily. I was to phone her back on monday and let her know how it went over the weekend. Her view being if this doesnt do the trick then it might be vascular rather than muscular and then she would have to refer me. Refer me to who? She didnt say. Something isnt right here. Hopefully my body will fix itself over the weekend. Its rather annoying as everything else seems to be recovering well .
Ah ... almost forgot .. the Cialis 5mg a day arrived for the erectile dysfunction. This least of my current problems at the moment !