GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

Archive for the ‘incontinence’ Category

Cancer And The Domino Health Effects Of Treatment

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Cancer Ribbons

Cancer Ribbons

I have been mentally calculating an audit lately of the personal health effects as a result from my prostate cancer and its treatments. It has become apparent to me, that the results of this audit may make for an interesting article for some readers. What follows is not intended as a “Poor Me” sympathetic seeking diatribe, but rather as a personal example of the domino effect that a cancer diagnosis can have on the health of a patient. I am sure that many long-term cancer patients would also see themselves, and their journey in the same way. My intention in this article is to highlight this issue so that fellow cancer patients, recognise that they are not alone, and to advise new cancer patients of the pitfalls that may await them on their path.

Before I begin, I should point out that prior to the time of my cancer diagnosis, I thought I was a pretty fit soul. I visited and walked Kokoda in 2008 and 2009. I was an avid sailor, diver and fossicker up to my diagnosis, and my previous health apart from skin cancers had been marvellous. In July 2011 I was about to turn a fit and active 64 years of age in September, and I felt bullet proof…….Until late August.

My cancer adventure began in late August 2011 when I experienced urinary problems that lead to my visit to the GP, and then for a PSA test and ultrasound. The results showed a PSA of 4.5 and an enlarged prostate that led to a diagnosis of BPH. (benign prostatic hypoplasia) I was given a prescription for pills to alleviate the urinary pain, and a future date in six months to repeat the tests. I didn’t quite make the six month period as the symptoms became much worse in January and February of 2012. In early March I had my first visit to the urologist, whose examination led to a biopsy; With the results confirming advanced aggressive prostate cancer that threw me into a spin mentally.

I needed to make a choice of treatments available, and through some early research and medical advice decided on, Radiation and Androgen Deprivation Therapy as my primary treatments. I immediately received my first injection of the drug Eligard, that I was to receive every four months for the next two years, plus an oral anti androgen drug taken daily. On the other hand in order to begin my radiation treatments, I first had to attend to my urinary symptoms which involved a surgical procedure carried out in May called a TURP (rebore.) The TURP procedure alleviated the urinary restrictions, but also introduced a series of urinary tract infections that persisted until September 2012. Finally in October I was able to begin the radiation treatment.

So there I was at the end of 2012, having had to cease work with the following health audit results of:

  • Various urinary symptoms, including some incontinence, and infection causing increased frequency, pain, chills and fever.
  • Erectile dysfunction and loss of any sexual libido.
  • Hot and cold flushes, constant mental and physical fatigue.
  • Sleep disturbances and increasing joint stiffness and joint pain.

The following year 2013 found me dealing with the above side effects, and attending to all the medical visits to doctors for blood tests and scans. The year finished with the following health audit:

  • All of the previous years health issues.
  • A new diagnosis of Diabetes type II, which may or may not be attributed to the Androgen Deprivation Therapy but included diet modification and blood monitoring daily.
  • A diagnosis of osteopenia, which is a precursor to osteoporosis or thinning of bone density. This may or may not be attributed to the Androgen Deprivation Therapy.
  • Intermittent urinary bleeding had started late in the year.
  • An instance of mental depression led to mental breakdown with considerations of suicide. This led to several sessions with a counsellor.

Early in 2014 the urinary bleeding events began to worsen, and become more frequent. I had a cystoscopy examination that concluded I had radiation damage to the bladder. In May I began hyperbaric oxygen treatment to treat the radiation cystitis in Townsville General Hospital for two months. Unfortunately this treatment failed, when I was admitted as an emergency with urinary retention, twice during the hyperbaric treatment. The frequency of hospitalisations due to urinary blockages and bleeding increased throughout the year, including several medical procedures to attempt to solve the issue. Finally in November, surgery removed the remains of my prostate gland, lymph nodes and the bladder. Pathology confirmed active cancer cells and tumour were evident in the samples. These had been previously undetected by PSA monitoring. Pathology also confirmed the bladder tissue was quite neucrotic and fragmented. The health audit for 2014 brings us up to date with:

  • Most of the previous two years issues still current.
  • The ill-health and the effects from pain, and mental anguish from instances of urinary bleeding and blockages that required hospitalisations.
  • Uncontrolled urinary incontinence from time to time.
  • The immediate effects of the surgical procedures, and rehabilitation needed.
  • The care and maintenance of the stoma, that was surgically created to replace the bladder function.
Sometimes its the truth

Sometimes its the truth

Looking back over what I have presented here, seems to be pretty much just a summary of events that I have written about in other published articles. That may be the case, but I think it still represents a good example of cancer and the domino effect that cancer causes in a person’s life. When I think about the domino effect, I wonder just how accurate are the mortality rates given for cancer by the statisticians. Could it be that the cause of death in some instances, attributed to conditions other than cancer, be actually a bi-product of the cancer domino effect????? As an example, prior to my surgery in November 2014, I was critically ill with blood loss and urine retention. My doctor at the time, agrees that without surgical intervention I would have died from blood loss by Christmas 2014. If that had been the case, would my death have been registered in statistics as being from my prostate cancer, or from blood loss and urinary retention?????

 

Lee aka Popeye

 

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Living with a Stoma after an Ostomy

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There is always another way

There is always another way

Here I sit three months after my radical surgery that has given me a new lease on life and I feel healthier than I have been for the past three years. The surgery has also left me a legacy of dealing with a stoma and the new physical disciplines and mental attitudes associated with my new plumbing arrangements. Very basically there are two types either a colostomy (bowel) or urostomy (urine) both of which utilise a bag or pouch placed over a stoma to collect waste and changed out frequently.

 

Ostomy surgeries are usually performed for a variety of medical reasons such as endometriosis, crohns disease or cancer. The surgical formation of a stoma can save a patient’s life and provide a near normal quality of life than would otherwise be the case. At the time of my surgery there was a chance that I might have had both types of stoma’s installed as it was unclear if the surgery might damage the bowel as well. However luck was with me and the surgeon when all went well and I received the urostomy stoma only.

A whole new experience opens up for patients receiving a stoma. First and foremost is the arrival into your life of the stoma nurse who is a trained specialist nurse. The stoma nurse is responsible for educating the patients on stoma care and hygiene. The nurse is also responsible for training the patient in the use of equipment necessary to apply to stoma’s. The stoma nurse is also the first point of contact to whom the patient will report to on a regular basis. The patient will find themselves members of the Australian Ostomy Association which allows them access to a free monthly allocations of bags, pouches or other equipment, but postage costs do apply. The association also publishes a magazine on a regular basis with much valuable information for patients.

I have settled into a routine easily enough and am truly grateful for the good health I now feel. I still haven’t got back my strength fully and some days are better than others but overall I feel almost normal. I will never be able to say I believe my cancer is gone for good, but my PSA is now undetectable and I know that at least all the cancer that was known to be still active has been removed. Still, there are some issues with having the urostomy that I need to explain for readers.

Since my urine is now flowing via a conduit through my abdomen (just to the right of the navel) into a collection bag it can be subject to leaks. Leaks occur without warning when seals or base plates degrade, fold up or let go. I have trialled different types with and without seals and have finally settled on what I consider the most reliable. This apparatus normally will give me two days and nights (with daily bag changes) without failure. The bags normally need draining approx every couple of hours or when about a third full and is a simple procedure of turning on the tap over a toilet bowel. For night-time I hook my bag up to a larger night bag and this is emptied and cleaned each morning.

From time to time I have experienced leaks with the worst case being a leak during the night from either the stoma fitting or a night bag leak. I have tried to pre-empt these disasters by using a waterproof blanket under my bed-sheet and a tray under the night bag. Still accidents will happen and I have to deal with them and the clean ups as they occur. Leakages that happen while out and about are dealt with by a bag that I carry with a change of clothes plus equipment to change on the stoma. Even though a leak event is fairly uncommon it is still a mental issue for me and affects where and when I go anywhere and what I take with me. I now tend not to travel if accommodation is a factor and when I do travel, I prefer to be in my own car with all the equipment I need. Heading into the city on business is controlled by my knowledge of the location of public toilets and preferably the handicapped ones.

As I have often said before cancer is as much about the effects of cancer treatments for patients apart from the effects of the cancer itself. Cancer is a catalyst for all sorts of a domino fiasco’s introducing all sorts of impacts on a patients life. My pathway to where I am today is testament to what I have just said, however I would like to say that I am extremely grateful to be still here. Medical opinion was in agreement that my used-by date was approx last christmas if the surgery had not taken place. Learning to cope physically and mentally with my latest hurdle is a small price to pay for the extension of my used-by date especially when I feel as well as I do at the moment.

Graphic of a Urostomy Stoma

Graphic of a Urostomy Stoma

“I can do this …………and I can do it with a smile.”

Lee aka Popeye

 

The Latest Update Regarding My Radiation Damage and Cystitis

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Luck of the Irish

Luck of the Irish

Well I guess I am living proof that everyone’s cancer journey will be different. In my past few articles I have described my condition and ongoing treatment with radiation induced haemorrhagic cystitis of the bladder. This article will just about bring my odyssey to (I Hope) a successful outcome (or at least an acceptable one.)

Since I wrote my previous article I have had another incidence of heavy bleeding with clots and tissue pieces that have again caused a major blockage and once again in the dead of night. This required another ambulance trip into the Mackay hospital and the dreaded catheter again. The hospital once more organised an emergency flight by the RFDS ( Royal Flying Doctor Service) to Townsville Mater hospital where I spent 10 days trying to clear up the mess. During this time I lost so much blood I was given a transfusion to steady the blood count.

Interestingly the treatment that finally helped stopped the bleeding, was an older treatment with the bladder being irrigated with an Alum solution. This was a crossed finger and hope for the best selection in an attempt to stop the haemorrhaging. The treatment had not been used for some time so new protocols had to be written by a different Townsville hospital that was able to supply the staff with the knowledge and the equipment. I was transferred for the treatment that lasted for most of the day. However within twenty-four hours the bleeding, clots and other crud actually cleared up to everyone’s amazement.

The following information may be of interest for readers. I believe that the alum (or aluminium potassium sulphate /or/ aluminium ammonium sulphate) was the same stuff that men used to carry around with their shaving equipment in the old days. It was in the form of a white pencil thing that if my memory serves me was called a styptic pencil. It was used when the shaver nicked himself using a razor, the pencil would be wetted and applied to the cut and stopped the bleeding.

Some good advice

Some good advice

Well, “blow me down“, the treatment worked and continues to do so for the moment. This has been a huge relief but it also bought me the time that has allowed me to have a brand new type of MRI scan done here in Townsville. I had to pay the full cost of the MRI as medicare have not listed it as yet. The results have been extraordinary as my specialist was able to show me in great detail the workings in my pelvic area.

The bladder is badly damaged, so much so there is barely any room to contain the urine. The walls of the bladder are udder like with huge areas of a varying of thicknesses that are my future, as and when they begin to break away causing the bleeding and blockages. The bladder has to be removed and I will be fitted with a stoma. The specialist then showed me in vivid detail the active cancer cells still attached to the remains of the prostate bed and he is certain that he will be able to remove these totally. Time will tell the micro metastasis story on these for my future.

The main concern of the surgeon is the problem of the possible fusing of tissue between the prostate bed and the rectum/anus area. It appears from the MRI that there is a division in the tissue but there are parts that are hidden from view so he will have a rectal colon expert standing by if needed.

I will certainly be left with a stoma for the urine for the rest of my life. In the worse case scenario If there are problem issues with the fusing of tissues then possibly a further permanent or temporary colon stoma depending on the amount of damage encountered and the fixability of this particular issue.

I am due to have the procedure done next Saturday 8th November and it seems strange to me that here I am having standard prostate cancer treatment but it has all been back to front from the normal way of the workings of doctors. It is interesting that I am able to have this surgery after radiation but I can say I am looking forward to a resolution to my bladder problem. My doctor says approx. 5% of patients experience the type of bladder issues I have endured after radiation treatment while 95% sail through. I can understand his point but I would like to tell him and my readers that being a member of the 5% brigade has been frightening. I can hardly wait to have this resolved.

Some more good advice

Some more good advice

Although a little apprehensive as to the results of my surgery on Saturday I realise I have no choices left to deal with this haemorrhagic cystitis thing and the procedure is the only hope I have of resolving this issue. There is a part of me however, deep down inside that is already wondering what my next little adventure may be with this cancer journey.

Lee

aka Popeye

Further Reading

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2938536/

 

Radiation Treatment Damage and Blood in the Urine……….Another Update

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Where to go ???and What to do

Where to go ???and What to do

It seems nearly a lifetime ago that I put pen to paper and in some ways it has been a lifetime. In my previous posts I have set about describing a new cancer path that has appeared for me that is still evolving as I write. Radiation damage to my bladder and pelvic area has progressed at a remarkable rate and seems to have begun a life of its own. When I first went looking for information on this subject I discovered mainly technical references to this issue with very little personal information from a patients point of view available. Because of this I decided to concentrate my efforts to describe in a personal way the effects of this condition for other patients who may be heading in the same direction. I cannot offer statistics on the prevalence of severe radiation damage suffered by patients but my first hand experience allows me the opinion that the condition is a serious debilitating and life threatening experience for those afflicted. There appears to be no easy fix for the problem and no prognosis available as the issue evolves and grows in severity and patients move from procedure to procedure.

From where I now stand I view this condition as one that should be more seriously openly, considered, discussed and understood when choosing a primary treatment involving radiation treatment to the pelvic area. Complications for this condition, if it occurs will be hindered by the constraints of limited surgical procedures available and the unavailability of further radiation treatment post the initial treatment. Chronic radiation damage to the urinary tract or bladder can be a life threatening event no less than the cancer can be. The symptoms of bleeding, clot blockage and urinary retention leads to organ spasms and toxic shock with the whole body in seizure. This is only relieved by heavy pain killing injections and the insertion of a catheter. Even the catheter itself can clot off or slip and block the bladder neck causing the same symptoms ( I have experienced this multiple times over the past two months, including once when I expelled the catheter by the force of the spasms.) The following is a time line of my treatment and hospitalisations over the past few months.

The progress of blood in the urine to full-blown urine retention due to blood clots started slowly some twelve months ago and then rapidly accelerating to how it has been for me over the past few months. My treatment began in the hyperbaric chamber undergoing a 50 daily treatment plan. This eventually failed me when in June this year I was admitted twice to the Townsville hospital emergency department and hospitalised for a week on each visit. I then attended a recommended urologist who performed multiple procedures during August and September using a cystoscope applying a green light laser vaporisation and cauterisation of the friable blood vessels that had been damaged by the radiation treatment I received nearly two years ago. The largest procedure I had recently was another TURP where the remains of the prostate gland was completely vaporised and the remaining blood vessels cauterised.

In between these procedures I have been hospitalised in August in the Emerald general hospital and in September three admissions to the Mackay general hospital was followed recently by an emergency air flight to Townsville by the Royal Flying Doctor Service. This last episode delivered me back to the urologist who performed some more diathermy to my bladder wall to stop the bleeding and clotting. In fact I am writing this article as I recuperate from this latest adventure in Townsville before travelling home to Mackay.

At a meeting with the Townsville oncologist last Friday, I learned that tissue samples the urologist sent to the pathology laboratory from my latest TURP has revealed active cancer cells still in the remains of the prostate bed. What this means is that the previous radiation treatment has failed and the cancer is still in situ. I ceased using ADT (Eligard) last March as my PSA had remained stable at 0.02 over the past two years. My oncologist has now suggested that I consider keeping a close watch on my PSA for any increase and doubling time with the view to restarting the ADT when this occurs.

Where the blazes do these end up

Where the blazes do these end up

As I write this I feel like I have been run over by a bus, dealing with the after effects of the procedures including some serious incontinence issues which I have not described within this article but they deserve an article some time in the future. The good news is, that for now the bleeding and passing of clots has finally stopped for the first time in months. I am not as concerned about the return of the cancer as I am about the possibility of further bleeds and urinary retention in the future. To undergo the uncontrolled body spasms, pain and despair associated with full-blown urinary retention is a major….. major……., major fear for me and I dread the next episode if there is more to come …………………….. and unfortunately there is no-one who can guarantee there will not be future episodes.

Lee aka Popeye

 

Blood In The Urine, Radiation Cystitus And My Prostate Cancer Management.

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And so can opinions

And so can opinions

I feel compelled to write this article to summarise all the major medical events that have led me to where I stand today. I write exposing my experiences with this disease and the medical to-ing and fro-ing from the medical side of my disease management. I feel that some of these medical decisions and procedures I have personally experienced have left me puzzled. Perhaps my story may be of assistance or support to those who may be experiencing the same issues or for those who may yet come down the same paths. Before I begin I would like to state the following:

“I am not a doctor and the views I present here are purely personal and are private opinions only”.

I have deliberately refrained from specifically mentioning doctors names in this or any of my past articles to maintain anonymity for those medical professionals I have encountered. Medical personnel, be they doctors, specialists, nurses or assistants are human just like everyone else. There are many stages of competence within the profession. Sometimes mistakes are made and sometimes an inspired insight may provide a miraculous cure. In almost all of these professionals there is a desire to be as good as they can be. However natural abilities will vary enormously just as in any other profession. The trick for patients to learn is being able to recognise the variations in those treating the illness.

I remember, way back in 1993 I had an operation on my back and while recuperating I received one of those spooky insights that happen from time to time. It was in the form of a remark from a disgruntled fellow patient in the bed opposite me and was spoken to me as I was about to leave the hospital. He called me over and said the following: ” Just remember lad, when you get back home that they don’t call a doctor’s office a medical practice for no reason”. He motioned me closer to him then said “the emphasis is on the word practice“. In a way I guess you could say his remark supports the cliché of getting a second opinion on medical matters.

I live in the regional area of Mackay Queensland Australia, Ah! such a beautiful area. It seems like such a long time ago in March 2012 when I was diagnosed with prostate cancer. My PSA at the time of diagnosis was only 6.5 having risen from 4.4 a couple of months previously. The pathology identified a Gleason 9 (4+5) in all 18 core samples with tumour volume of between 80% and 100% , the grading was a T3a. That diagnosis led to two alternatives. The first urologist advised surgery and a second opinion from a different urologist advised it was inoperable and this was supported by opinions from two further specialists in Brisbane. These specialists all recommended Androgen Deprivation Therapy plus HD brachytherapy followed by external beam radiation. I then accepted this advice as the way I should choose.

Covering all bases

Covering all bases

The urologist then referred me to the two specialists in Brisbane to begin the brachytherapy in May. When I finally consulted with these specialists they were annoyed as they had not been advised that I was symptomatic with urinary problems (the reason my cancer was discovered in the first place was because I had urinary symptoms.) They sent me straight back to Mackay to get this sorted out prior to having further treatment. I underwent a TURP procedure in May where the urologist removed a third of my prostate tissue during the rebore to alleviate my symptoms. After my discharge from hospital I contracted an infection that took months to resolve.

Finally in September my urologist referred me back to the specialists in Brisbane to undergo the HD brachytherapy. It was at this meeting in Brisbane that I discovered that because I had undergone the TURP procedure with so much tissue removed I was no longer a candidate for HD brachytherapy. I was then offered a full course of external beam IMRT radiation with the continuation of the ADT medication.

I eventually received a full course of IMRT at the Sunshine Coast in Queensland, 38 days of radiation for a total of 78 Gy. My PSA dropped to a nadir of 0.02 over the ensuing months and I also continued my ADT medication. In March 2014 I had been diagnosed for two years and as my PSA had remained stable I was given the OK to stop the ADT medication. My latest PSA result in June 2014 remains at 0.02.

Back in March 2013 My urologist and I had a disagreement when he offered to perform an orchidectomy procedure (surgical castration) prior to me leaving the private health system. As a result I discontinued our medical relationship. In August 2013 I began having visible minor bleeding in the urine from time to time. This steadily became more frequent and was identified in pathology when I presented to my GP with this issue.

I eventually had a cystoscopy as a public patient that was performed by the original urologist I consulted way back on diagnosis day. He also undertook consultation work at the Mackay public hospital. After the procedure he diagnosed radiation cystitis to the bladder wall and referred me to the radiation oncologist based in Townsville. The radiation oncologist then referred me to the hyperbaric medical unit in Townsville general hospital where I underwent treatment (This has been outlined in detail in a previous post.)

During my hyperbaric treatment I experienced severe bleeding and urinary retention on two separate occasions requiring admission to the hospital emergency department in the middle of the night. The emergency department personnel were great, admitting me immediately and were able to catheterise me on both occasions, however my time there was painful and distressing. (A full coverage of this can be read on my two previous posts.) The only treatment I received, was the bladder irrigation via the catheter and at no time was it suggested to me, that they might try a further investigation to confirm the cause of the bleeding, nor carry out any cauterisation. I managed to see the medical registrar on four occasions for a total time of approx 4 minutes but never saw a urologist. Both times I was discharged when the urine finally cleared of blood.

interestingly I recently received copies of blood tests that were done when I was receiving treatment at the hospital and all my blood counts were below normal. I now wonder if these low blood counts were serious enough at the time to have warranted further treatment.

It was during my hospitalisation that I was approached by a fellow patient with similar issues. He recommended I see his personal urologist in Townsville who he valued highly for an opinion. I was able to organised a referral and saw the urologist as a private patient and was immediately impressed. This has also been covered in a previous post but it is worth repeating here. He performed a cystoscopy and found the following (This is from his report):

There was a small submeatal stenosis which was passable ( a stricture–narrowing of the opening of the urethra ( this can be caused by catheter use) The prostatic fossa (the prostate capsule or prostate bed) was quite open and there were quite a lot of radiation affected vessels which were very friable. These were diathermied (cauterised) Both uretic orifices were normal and there were no calculi (stones) There was no radiation cystitis in the bladder or any papillary lesions. Sooooo there you go, a different diagnosis from a second opinion. Seems like the bleeding was from the remains of the prostate gland and not the bladder.

It has taken me quite a few weeks to get over this procedure and I am still battling with urinary issues including pain and incontinence. It is steadily improving and I am hopeful that I will return to normal at some stage. The important thing is that the bleeding has settled down. I did have some slight bleeding from time to time and I did pass a few clots but the incidence of this is fading fast as the weeks go by. I am scheduled to have a tele conference with the urologist in two weeks where I will get a chance to ask him further questions on my prognosis with the bleeding.

Here then is my summary of discord:

While I know that I had no alternative but to have the TURP procedure and I am grateful to the urologist that it resolved my urinary problems. However, I am left wondering how he was unaware it would rule me out for the brachytherapy treatment before he shunted me to Brisbane. Later, his offer to perform the orchidectomy was put to me in a way that offended me and as far as I could see had no basis of offering me any cure.

The first diagnosis of radiation cystitis in the bladder wall is at odds with my second cystoscopy diagnoses. I still wonder, why???

I have searched for information regarding the issue of bleeding from the prostate gland after radiation with little results. If this is indeed a possible side effect as it appears to be with me, would it have been advisable to have had the prostate surgically removed in the first place??

During my hospitalisation, should the hospital have carried out further investigative measures, particularly when I turned up two weeks after the first visit for the second admission???

I have now been treated both as a private and a public patient and it offends me that private patients are given general anaesthetic for procedures such as a biopsy or a cystoscopy, but not if you are a public patient. Both these procedures are distressing to endure without general anaesthetic. In the public system you will receive an anaesthetic gel which is next to useless.

Regrets I've had a few.....but then again too few to mention.

Regrets I’ve had a few…..but then again too few to mention.

 

The medical management road for patients with chronic illness is a mine field of pitfalls with choices offered by medical opinions. Patients should endeavour to research and learn as much as they can about their condition. Please be aware however, that knowledge is a two edge sword and being able to rationally dissect the good from the bad and remain as objective as you can is the best advice I can offer. I keep copies of all my medical records and I try to keep a diary. Lastly never be afraid to seek a second, third or fourth opinion. After two and a half years of my illness I am still seeking information and knowledge regarding my prognosis.

Cheers

Lee aka Popeye

 

Blood in the Urine and Radiation Cystitis Part Two

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Emergency

Emergency

I thought I had closed off the subject on haemorrhagic bladder cystitis and blood in the urine but recent events have led me to write this article. What I am about to describe is not a “Poor Me” event but an article I feel needs to be explored to inform those patients who may have to face the same situation as I am going through. This is a personal description of what it is like to have a massive bladder bleed with retention and bladder spasm’s.

As I have written in my past few posts I am undergoing hyperbaric oxygen treatment in an effort to heal my diagnosed bladder cystitis. However a few days ago I experienced a massive bleeding event resulting in a midnight dash to the Townsville Hospital Emergency Department.

I will start by trying to describe what it is like to experience a bladder spasm. If you have ever experienced a severe muscle cramp or witnessed a footballer suddenly collapsing in agony with a muscle cramp spasm you will have some idea of what this may be like. The difference however is the frequent amounts of spasm’s experienced by urine retention patients. Throughout my whole ordeal I was experiencing these attacks on a regular basis for two days and nights with the bowels joining in the chorus at times. Sleep was non-existent all through this period and on a pain level out of 10 it was a 15 every time. I felt like I was being disemboweled

My adventure began as a series of small bleeds during the evening suddenly increasing to urinary retention where I was unable to pass the clots. At the point at which I could not pass any urine or clots the bladder spasm’s began to wrack my lower pubic area and off to the emergency department I went. The emergency department were terrific and admitted me straight up and administered some pain killers and inserted a three-way foley catheter. (Having one of these catheter’s inserted and retrieved deserves an article in itself, however I will leave this for another time)

The next couple of days and nights have been seared into my memory as the worst distressing period of my life. They gave me some heavy pain-killer medication plus a drug (oxybutynin) to help minimise the spasm’s. These helped somewhat take the edge of the pain except during the height of a spasm which would last approx 30 seconds and then reliably return approx every 30 minutes. I found I could not lie down for long but was better able to handle the spasm’s when I was standing erect, so, standing I was for two days and nights. The catheter kept blocking with clots and the nurse had to constantly flush the catheter. sometimes I could clear it myself by jiggling, squeezing or adopting different stances to keep the flow going.

The bleeding finally stopped and I was released back out into the wild and back to my hyperbaric treatment. I am still left with the occasional mild spasm, a little incontinence and increased painful urination. The hyperbaric unit has been supportive and wish me to continue with treatment. They do not see this as a failure in my treatment as I am only half way through my sessions. They explained that the treatment is aimed at supplying oxygen to these blood vessels thus assisting in the healing. This healing effect will continue for a couple of months after completing my sessions. It could be possible I may relapse in the future but I can always have the treatment again at some point if needed.

Catheter Fun

Catheter Fun

Summarising these events I would like to say that those days and nights were the most painful, distressing, unhygienic, un-dignified and embarrassing moments in my life. In describing these events I have painted a bleak picture with little or no hints for those who may yet travel this path. Greg wanted this site to be warts and all and that is the reason I have submitted this article. It’s main aim is to at least warn those patients that this road may yet confront them in their cancer treatment travels and also to highlight that they are not alone, someone has been there before. Drink at least two litres of plain water daily and mind the foods you eat. They should be non acid forming and not spicy. Tea, coffee and alcohol should be modified or discontinued. The aim of the game is to reduce bladder irritants and flush the system with water.

I would like to publically thank the staff of the emergency department at Townsville General Hospital for holding my hand throughout this ordeal.

Lee aka Popeye

 

Written by Lee

5 June 2014 at 4:32 pm

A Cancer Patient Caregiver Perspective

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You Are The The Wind Beneath My Wings

You Are The The Wind Beneath My Wings

In my course of seeking information on all aspects of prostate cancer and cancer in general, I have a list of favourite sites I visit daily to keep me up to date with the latest issues. I have just come away from one of these sites nearly in tears with one of the articles offered regarding a brief compendium from a spouse of a man. This article is one of the most powerful and revealing insights into what it means to be a loving partner and care giver to a spouse who has been diagnosed with this horrible disease.

I do not care if I am infringing on any copy write prohibitions by posting this article here on this site, as I think this information deserves a wider appreciation by readers. I apologise in advance if anyone may be offended, but I believe this is an important disclosure that uplifts the spirit on what it means to love someone and confirms the vows of:  “In sickness and health, for better or worse, until death do we part“. To often the role of the care giver in these situations is overlooked and they are left to battle their own demons in often miserable circumstances. So here is the letter that appeared on the web site “malecare advanced prostate cancer.”

http://advancedprostatecancer.net/

So True

So True

As I have said before, the true unsung heroes of our fight against advanced prostate cancer are our caretakers. Our caretakers are our saints, they help educate us, they advocate for us, they shield us and they make us as complete as we can possibly be. They improve our lives and help us get through the day with love and enjoyment.

Sadly, they do this for us at great personal costs. A caretaker posted the following on the advanced prostate cancer online support group. I thought that it was important for all of us, both prostate cancer survivor and caretaker. It talks of her frustrations, pain, her reality.

I attempted to read the link but the uro site wasn’t very friendly. That said, I could say that as a spouse I know more about prostate cancer than I ever wanted to know.

My husband is so overwhelmed by the medical jargon, poor explanations by previous oncologists (yes, we fired him) the confusing sounding names of medications, treatments and just about everything to do with his cancer. I do the research, find layman friendly articles and generally find myself explaining to him what is going on with his disease progression.

I have an advantage by being a nurse but yet to understand some of the information I too need a medical dictionary. It is overwhelming. I am not just the wife and support, but his advocate in wading through a confusing and scary disease that has no cure at this stage.

My husband doesn’t avoid his diagnosis, disease, treatment and projected outcomes but doesn’t want any doctor to give him time frames. He tells them to tell me. Luckily, we haven’t come to that. He talks openly about how he feels, what side effects he thinks he might be experiencing and he does read the brochures or booklets provided by the pharmaceutical companies. He is better about discussing his feelings, side effects and does ask questions when we see his oncologists.

We have been dealing with prostate cancer for 10 years. This month is the anniversary of his prostatectomy and he was clear for two years after that. His rising PSA began in 2006 and become hormone resistance in 2011. He had soft tissue mets initially followed by bone mets. He has taken Provenge, Zytiga and Xtandi

He depends on me, each step of the way, to explain the treatments, CT scans, lab reports and what it all means. I have been understanding of him, frustrated, sad and grieve for the loss of his energy and his sexuality.

I tell him when he needs to go talk to someone because he’s being an angry jerk. He tells me when he doesn’t want to know what I know medically or see on CT reports. I never explained the last one to him, only that his bone mets had progressed. He didn’t ask, I don’t volunteer.

I have never pushed or asked for our sexual relationship to resume because I am educated and know it won’t. Period. Hormones to suppress testosterone suppress libido and women need to know that. We have talked about it but it isn’t important. He is alive. There’s more to a relationship than sex.

I have this wonderful group for support and encouraged him to get involved but after years of a government job he swore after he retired at 60 to never have to log onto a computer daily again! He likes when I read him your posts.

I also have a group of women I am close with at the touch of a keyboard or phone and they provide a tremendous amount of support and we all stay on top of the new drugs and treatments available for our guys! We support each other when we are frustrated.

Maybe a study on how patients and their caregivers find and are given information so that they could understand would be a good one as well as how they cope day-to-day.

I admit I am stressed, anxious and recently I have been diagnosed with stress related hypertension, but I find my own outlets of talking to my “blue sisters” emailing them, Face Booking them, reading and responding to group posts and by Humor. Humor has always been my shield and I joke with my own doctor that I am fine and she will know when I’m not when they call her and tell her I have been picked up for marching in my own parade nude down Main Street!

Am I worried I won’t do a good job taking care of my husband when he can no longer care for himself? Absolutely, but I will do the best I can. I try to take care of myself and not think of the possibility that I will be alone, I have been alone before and I will survive. We all will be with each other.

I read, walk, paint and still work part-time and have a network of family and friends who are a great support.
I would like to read further studies if I could ever get the uro website to function!

I give virtual hugs, bright blessings and heartfelt thanks to all who post on this group, who live with the stress of this disease, the uncertainty and the pain. Pain both emotionally and physically. As a spouse, caregiver and advocate all I can say is Keep Up The Fight! Support PC research! Love each other! “

Take My Hand My Love

Take My Hand My Love

AMEN and

Thank you God

Lee aka Popeye