GREG'S LEGACY

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

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, Radiation Cystitis and Wait…….There is More Side Effects.

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Its all about dealing with side effects

Its all about dealing with side effects

 

It seems some things are never simple for me these days…… Things have changed somewhat since publishing my previous story on my diagnosed radiation bladder cystitis and the hyperbaric treatment I was having to correct the problem. There has been a new diagnosis offered for the bleeding I was experiencing. To explain this issue I will describe the events that have taken place since my last article “Blood in the Urine and Radiation Cystitis Part 2.”

In my previous article I described graphically my hospitalisation with urine retention due to clotting. I deliberately did this so that people might have some understanding of what this condition may be like. Three weeks after I was released from that first hospital visit I again presented to the emergency department with the same symptoms and the dreaded catheter was inserted once more. This time my stay would be for a week before the bleeding subsided, so I got to experience the dance of the bladder spasm’s again.

It was during this second hospital visit that I had a conversation with a colleague I had met in the hyperbaric medical unit that would change the game plan a little. Our conversation began with a critical chat on, “How come the hospital didn’t perform another cystoscopy and cauterise the blood vessels responsible at the time.” Then my colleague recommended a certain urologist in Townsville and suggested I should get a referral for an appointment as a private patient. My second hospitalisation coincided with the end of my hyperbaric treatment and sadly it was presumed that the treatment had not been succesful for me.

A few days later I was able to consult with the recommended urologist in Townsville. He was very thorough and was able to access most of my medical records over the past two years. After an examination including a DRE he advised me to consider having a cystoscopy to evaluate the condition along with any cauterisation required. He also explained that it was his opinion that my bleeding problem could be from my prostate gland and not the bladder itself. He explained that the remains of the prostate gland after radiation treatment contains a gelatinous amount of dead cells and damaged blood vessels. This gelatinous material continues to enlarge and will slough off from time to time causing hematuria and clots in the urine. He would be able to make a definitive diagnosis during the cystoscopy.

And so it was……. After the procedure the urologist confirmed that while my bladder does indeed show evidence of radiation damage it was not the main cause of my troubles. The remains of the prostate gland was at the centre of the bleeding I had been experiencing. He cauterised the surface of the gland in the hope that this would be sufficient to correct the problem. Time will be the decider on the success of this procedure, if the bleeding recurs, the next plan is to go back in and scrape the gelatinous mass and remove it entirely back to the capsule, just like scraping out an orange.

It is now two weeks down the track since the latest procedure and cauterisations and I still feel pretty knocked about. I am experiencing urinary problems including more visits to the loo complete with urinary pain and mild bladder spasms from time to time. Some incontinence with urgency, pain and inflammation within the pubic area and to round it all out the UTI is back. The good news is that I have not experienced any bleeding so far and my new urologist claims that I should improve within the next week.

So there you have it……A bit of a long saga but I am happy to have presented it here in the hope that some other poor soul may benefit from my experience. It is said that every persons journey with cancer is different and I have to agree. This radiation damage voyage has led me through some horrible events and was looking like the condition might remain unresolved. All of a sudden a new path appeared out of the blue with a medical opinion that it just might be the remains of the prostate gland that is the problem. None of the previous doctors I had seen about the bleeding had mentioned other possibilities apart from problems with the bladder. Indeed the bladder may be an issue further down the track as it shows damage but for now perhaps the cauterisation of the prostate will let things settle for a while.

You decide the treatment and suck it and see

You decide the treatment and suck it and see

My cancer is still in remission but the side effects of my treatments continue to send me down some awful dry gullies since my diagnosis. A side effect of the hyperbaric treatment  that I have been afflicted with is a visual degradation, where it seems like my eyes have been smeared with Vaseline and everything is out of focus, even glasses do not help. the doctors assure me that it is a rare occurrence and I should get over it in eight to twelve weeks. Returning to the more serious bleeding events, it is worth stating here, that the side effects of radiation bladder cystitis and radiation proctitis of the bowel occurs in a very low percentage of patients receiving radiation treatment in the pelvic region. However if you happen to be in the very low percentage I hope my story might be of benefit. In closing this article it has made me think about the decisions made when I was first diagnosed with prostate cancer. If the new diagnosis of bleeding from the prostate gland proves correct, then the question would be. Would I have benefited had I elected to have had surgery and removed the gland prior to radiation??? This will be a question I will put to the urologist on my next visit, but I have a feeling there will be no definitive answer.

Lee aka Popeye

Cancer Detection Using A Dogs Sense Of Smell

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A dogs Tail

A dogs Tail

I recently read an interesting article that has prompted me to present the information here for my readers. At the latest annual meeting of the American Urological Association a presentation was given by a group of Italian researches on the results of a study in the use of dogs to identify prostate cancer. The link to this article appears among other links at the end of this post.

As a young man I spent three years in the Australian army, two years as a member of a unique unit establishing a mine dog section to support our troops in Vietnam. Mine warfare on jungle trails and bunker systems had become a whole new ball-game for our defence forces needing new methods to counter the devices being used. This unit was formed in 1971 and was due to be deployed to Vietnam in November 1972. The new Australian Government however announced the withdrawal of our troops in August 1972, so the unit never deployed to Vietnam. The mine dog section of 1972 however evolved over the years into the modern era, where our soldiers depend on the use of what are now known as explosive detection dogs. Our current forces with these dogs have served with distinction in Iraq and Afghanistan.

I can recall how amazed I was when time after time these dogs were able to locate explosive targets in all sorts of hidden positions, either buried or concealed in unbelievable locations. The size of the charges did not seem to effect the results, from large caches to microscopic residue found in a car boot. My admiration for a dog’s nose grew larger as we became involved with the early training of the custom drug dog training team. Two custom officers joined us for a period of time and together we successfully re-trained two of our mine dogs to locate drugs of all types. They of course went on to build the current drug detection units we see today.

So it was no surprise to me when I read the presentation and results on the study of dogs detecting prostate cancer at the AUA annual meeting. Further reading by me had me asking myself why this type of research has taken so long to be recognised and more widely promoted. I can only hope it will lead to a safer non evasive method of detecting cancer of all types for patients.

The following information may be of value in understanding what the results of the study could lead to in cancer detection. There are 220 million olfactory cells in a canine nose, compared with 50 million for humans. When dogs are trained to sniff for a target, they are detecting the chemicals emitted by the target. These chemicals are microscopic and are referred to as volatile organic compounds, or VOC’s. The particular VOC’s emitted by explosives and drugs have been identified and hence electronic sniffers for these compounds are now in use as can be witnessed at airports.

It is the same for the detection of cancer. Specific microscopic VOC’s have been found in the breath of lung cancer patients and colon cancer patients, as well as in the urine of prostate cancer patients. The most recent findings have spurred increased interest in dog cancer detection research, including efforts to determine the identity of the VOC’s emitted by different types of cancer. This would assist in the development of electronic devices that can mimic the accuracy of a dog’s sense of smell in detecting cancer in humans.

Now to the study results referred to at the beginning of my article. Two German Shepherds called Liu and Zoey (Ex Explosive Detection Dogs) were able to detect the presence of prostate cancer with an accuracy of 98.1 percent among more than 800 samples tested. These included samples from men with very low-risk disease, men with metastatic disease, healthy males, healthy females, and patients with non-neoplastic diseases or non-prostatic tumors. The dogs were able to detect low-risk and more advanced prostate cancers with equal facility.

In other areas Dina Zaphiris, a recognized dog trainer in America who works with canines on federally funded studies in detecting early cancer in humans. In 2009, Zaphiris, a dog trainer for 25 years founded the In Situ Foundation, a nonprofit organization that trains cancer detection dogs and conducts research in the field. In her studies, patients exhale through a tube on to a cloth, which captures molecules, or VOCs, of a malignancy. Trained dogs then sniff the cloths for cancer presence.

A Cause Worth Supporting

A Cause Worth Supporting

This information seems to back up the cliché that a dog is truly a mans best friend. The possibilities opening up with this work may be life changing in the early detection of cancer.

Lee aka Popeye.

Further Reading

http://prostatecancerinfolink.net/2014/05/21/liu-and-zoey-are-ferraris-who-massively-outperform-psa-testing/#more-19712

http://www.dogsdetectcancer.org/

 

http://www.chicagotribune.com/news/sns-wp-blm-news-bc-cancer-dogs24-20140524,0,4294267.story

 

 

 

Written by Lee

24 June 2014 at 11:42 pm

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

Hyperbaric Oxygen Treatment. “A Personal View”

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The Chamber of Youth

The Chamber of Youth

At long last I can finally put pen to paper and give readers an update on what has been happening with myself and my treatment. You may recall in a previous post that I revealed I was having some problems with radiation induced bladder cystitis and I would need to be treated in a hyperbaric chamber. Prior to the treatment I was instructed to have a colonoscopy just to check if there was any evidence of radiation proctitus affecting the bowel. Well guess what?…….. I have been diagnosed with both.

I previously explained that this type of radiation damage is rare these days, due to improvements in modern methods of directing radiation beams to tissue and organs. Approx 7 / 10% of patients will experience radiation damage to healthy tissue either in the short-term, (acute) or long-term (chronic). This damage to tissue can occur years after receiving radiation treatment and is difficult to heal.

Basically, radiation bladder cystitis and radiation proctitis is damage to the blood vessels surrounding the wall of the bladder and colon. The blood vessels rupture and bleed causing a degradation of quality of life and/or life threatening conditions as it progresses. These conditions do not respond well to drug treatment and show a limited response when the blood vessels are cauterised. Hyperbaric Oxygen Treatment is the gold standard for this condition with a cure rate of approx 80%.

I will not go into any further descriptions or prognosis on these two conditions, nor the technical science behind Hyperbaric Medicine. I have already written fairly extensively on the medical conditions in previous articles and I have included at the end of this post, links to articles of interest regarding Hyperbaric Medicine. What I will try to do, is give a personal account of my treatment so far in the chamber.

I arrived at the Townsville Hospital over a week ago and located the Hyperbaric Medicine unit in a back corridor where I met all the staff who are a tight-knit medical and technical unit operating the chamber for patients with all sorts of medical conditions, from radiation damage, to wounds not responding to normal medical treatment. Nearly all of these staff are recreational divers and are dedicated people.

Treatments vary from twenty to fifty daily treatments including weekends. There are two separate sessions a day, lasting for two hours each. I am to receive fifty treatments and have been allocated to the afternoon sessions. The chamber here in Townsville is rectangular and can hold 8 patients a session plus a nurse. On arrival, patients are required to change into “Party Clothes,” anti static coloured garments that are one size fits all, plus cute little colourful booties, nothing is taken into the chamber apart from a book or magazine. There is a television available that usually plays a movie if requested but the choices have to be, a movie that is no longer than two hours and has sub-titles because you cannot hear any audio due to the oxygen demand set up.

The session begins by pressurising the chamber to 140kps or approx equivalent to 14 meters,or in other words two and a bit atmospheres. This takes about 20 minutes to descend and you constantly need to keep equalising pressure in your ears, some drink water, others yawn and wiggle jaws and some hold noses and blow. When you get to pressure, a clear hood is placed over your head and you begin to breathe pure oxygen. I couldn’t help but be amused and smiled to myself as I did, that it reminded me of a Dr Who program complete with the Daleks “exterminate, exterminate.” There are two air breaks during the session, where the hoods are removed for five minutes and then the session ends as the pressure is gradually decreased taking approx 20 minutes to ascend with the hoods and oxygen in place.

This treatment is not invasive, nor does it create any side effects. I have read and heard some astounding things about the benefits of this treatment and as I look about at the staff and the long-term patients, I wonder about the glow of good healthy, youthful skin they all seem to possess……Could this be the fountain of youth????? The high pressure experienced forcing the pure oxygen into the bodies cells, reviving blood vessels and assisting with rebuilding neucrotic tissue and expelling waste……Mmmmmm …..Nice thought.

Is this a cure-all

Is this a cure-all

Time will be the judge for my condition but touch wood, I have not had a bleed since I began treatment, still I am looking forward to my fiftieth dive and going home at last.

Lee aka Popeye

http://en.wikipedia.org/wiki/Hyperbaric_medicine

http://www.smh.com.au/lifestyle/diet-and-fitness/how-effective-is-oxygen-treatment-20130524-2k52c.html

http://www.hyperbarichealth.com/doc/hyperbarichealth-booklet.pdf

http://www.cancer.org/treatment/treatmentsandsideeffects/complementaryandalternativemedicine/herbsvitaminsandminerals/hyperbaric-oxygen-therapy

 

Written by Lee

15 May 2014 at 3:44 pm

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