GREG'S LEGACY

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

Jack and Jill Cancer Tragedy

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Support From Friends and Family

Support From Friends and Family

The world of cancer can really kick you in the teeth at times, the trick is to be able to bounce back and move forward but sometimes it is more difficult to rise and come up smiling when it belts you below the belt. The following story is of events that have overtaken a married couple who are close friends of my wife and I. It took me some time to choose to publish these events as it is such an overwhelming personal ordeal they are dealing with. I wrestled with my thoughts on the moral justification in making their ordeal public and now I have done so in the hope others may be inspired by their story. In the following events I have used the names of Jack and Jill to protect their privacy and as I write I am still wondering at times if all this is not just a bad dream.

Jack and Jill are now in their late sixties. A few years ago Jill was diagnosed with bowel cancer and was at the time successfully treated with surgery, radiation and chemotherapy. A short time after Jill’s cancer treatment Jacks brother was also diagnosed with bowel cancer and he was also treated successfully with surgery, radiation and chemotherapy. With all the health and medical issues that had suddenly descended on them Jack and Jill decided to retire, buy a caravan and join the grey nomads touring Australia.

About the time they bought the van Jack fell off a trestle and broke his leg, down toward the ankle so the grand Australian tour departure was put on hold until his leg healed. Eventually they got underway but just a couple of thousand kilometers into their trip Jack and Jill found themselves stuck in Townsville as Jack had developed an infection in the bone where he had originally broken the leg. Townsville is where my wife and I met this pair and we became firm friends. Jacks infection was such that the leg was invaded by a medical steel structure from knee to ankle with rods descending into the leg at various places to deliver the antibiotics needed to the bone. Jack also was treated in the hyperbaric chamber for two months to try to assist the healing. Jack endured nearly twelve months of treatments to try to beat the bone infection without success.

Late last year the medical specialists and Jack started discussing amputation of the leg as the final solution and while these discussions were going on Jack had a colonoscopy which led to biopsies and he was then also diagnosed with bowel cancer. Now Jack and the surgeons had two problems to deal with and a decision was made to have both the amputation of the leg plus the bowel resection done at the same time (a 12 hour operation.) Both of these procedures were completed early in March and Jack is doing OK. He faces a lengthy rehabilitation period for his leg and prosthesis followed by perhaps radiation and extensive chemotherapy for the cancer.

The cruncher to all this came to a head recently when Jill revealed that she had been re-diagnosed with the return of her bowel cancer which had now spread extensively to her liver. The doctors informed her it was incurable and terminal, she could only expect her time left to be between 12 and 14 months. Now Jill had been informed of this some time ago but decided to keep it to herself until Jack had gone through his ordeal. That last sentence says more about the love and respect that one human can hold for a loved one than any explanation I could give. They have offered Jill some strong chemotherapy, not as a cure but to help prolong life long enough for both of them to return to their home once Jack is stabilised. I shake my head with despair for my friends and wonder how these sort of events can overtake good peoples lives.

With Love from Friends

With Love from Friends

I offer the following verse I composed for them and anyone else out there who might find some comfort in these words. It was inspired by the words of Gordon Lightfoots haunting ballad called “The Wreck of the Edmund Fitzgerald” The lead line has haunted me for years “Does anyone know where the love of God goes when the waves turn the minutes to hours ?” Somehow the haunting returned and I built on it in my own words as the timing seemed just right for my friends.

Does Anyone Know Where The Love of God Goes?

Does anyone know where the love of God goes when a cancer turns your time left to hours?

In the dark and despair only faith can repair, what the verdict of cancer has soured.

But his love is still there in the fond memories we share, with the love-ones we see that surround us.

Those moments are there when the laughter rang out and the hugs and the kisses were about us.

The hard times and fears, the regrets and the tears, have been dealt with and left far behind us.

So does anyone know where the love of God goes? Well I think the answers not hidden.

Seek deep in your soul among your memories there and give thanks to what he has given.

Lee aka Popeye

Discussion On Can Cancer Be Cured

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Is Cancer A Business

Is Cancer A Business

I am about to enter into the conspiracy view of a subject that has some rational common sense. This is not to say that I am a believer in this conspiracy theory on cancer cure but it is an issue I thought worth presenting here for my readers.

During periods of my life when in a philosophical frame of mind ( most times from the deck of a boat late at night while in a good anchorage) one of the questions I would pose to the universe from time to time was “What could exterminate the human race????? Apart from asteroid strike, comet collision or the sun disintegrating I thought about epidemic disease. The world has and continues to deal with many contagious outbreaks of disease in many forms Eg. Bubonic plague, Smallpox, Malaria and recently Ebola. I am now left wondering if the epidemic disease that deserves more attention as being the worlds largest threat is actually cancer in any of its forms.

 Thinking about what I have just written above, raises  Some other big questions that need to be answered, such as: “Is the incidence of cancer increasing in the world,” “What is causing any cancer increases” and “Can cancer be cured”??? Well, according to the World Health Organisation, the incidence of cancer is expected to increase by 70% within the next two decades. That means there will be an increase from 14 million new cases in 2012 to 25 million new cases per year by 2032. The scope of that statistic is amazing if you consider it is the equivalent of Australia’s current population, every man, woman and child being diagnosed with cancer every year. Over the same period of time cancer mortality rates world-wide are expected to increase from 8 million in 2012 to 13 million deaths per year.

The causes of the increase in cancer diagnosis is subject to speculative arguments but does correlate to the massive changes in living standards for the majority of rich countries over the past 100 years. The increase in the consumption of red meat, industrialisation and rise in air pollution, the discovery and manufacturing of chemicals used in everyday cleaning and many more influences that found their way into our modern-day way of life. The increase in life expectancy is also a reason given for the increase in cancer rates. The statistics tell us that by the age of 85, 1 in two men and 1 in three women will have experienced a cancer diagnosis during their lifetime.

While medical establishments and governments continue to advise the public that a search for the cure for cancer continues, the cure remains as elusive as ever. What the medical and pharmaceutical establishments have been very succesful at; Is in the overall management of cancer treatment including improved screening methods. Advances in the initial primary treatments of surgery, radiation and chemotherapy have been amazing as has the success of new cancer drugs developed. As a result of these advances the 5 and 10 year survival rate for cancer patients has increased dramatically.

This then brings us to the key issue of this article and the question “Can cancer be cured” ?????  Well now, this statement raises a whole lot of other assumptions because if you look at cancer treatment worldwide from a business point of view, you will soon realise it is worth an under-estimated trillion dollars annually and is also a growth industry. The conspiracy theorists could be forgiven for asking the question in this way “ Why would a trillion-dollar a year growth industry want to find a cure and close itself down”???????

If the true answer is in favour of the conspiracy theorists there are two main sides that need to be given more thought: The world is based on capitalism. Even if you happen to be Russian, Chinese or whatever, the money-go-round is essential for our wellbeing. Consider this. Huge profits are made by large corporations and distributed to share holders who in turn will use those funds in other areas. Thousands of individual people including medical researchers throughout the world, also earn a living from this industry. On the other side of the coin, moral issues need satisfying when you consider that every family on earth will be touched by cancer in one form or another. Time will be the judge on this matter in the long-term. As Popeye might of said “It is what it is, and that’s all that it is.”

Is this Humanity??

Is this Humanity??

My personal view is that with advances in screening recently and those expected in the future, most early cancers can be cured successfully. I have a belief that new types of cancers will appear as time goes by as a consequence of lifestyle changes affecting our lives in the future. Generally I feel that sadly, cancer will be with us for many years to come.

Lee aka Popeye

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

 

My God Box Adventure

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My God Box

My God Box

Welcome back for the year 2015. I hope everyone enjoyed the festivities and I sincerely hope that the new year will bring health, prosperity and peace to the world. In this article I have decided to write about a subject dealing with spirituality. I have been inspired to do this by an event that happened accidentally toward the end of my treatment for the gross hematuria I was experiencing. When I was at my spiritual lowest point during my illness, full of despair and accepting that I could be reaching the end of my life, a friend came to me and suggested the following idea.

My friend suggested I create a “God Box.” The idea being that I acquire a small box of some type where I could write down on little slips of paper all my fears, anxieties, problems or prayers and deposit them into the box for God to look after. Once these fears were deposited I could then just let go of them knowing they were in the hands of a higher authority.

Now I have never been a pious religious person who was a regular churchgoer, but I always retained a sense of confirmation that there existed a God that was responsible for all creation. The “God Box” suggestion just captured my imagination and fell in line with my overall belief in a creator. I believe that everything in life happens for a reason, both good and bad. I also believe my life has been directed at certain times by someone other than me when events have caused me to travel in different directions than I thought possible. So the search for a suitable box began and my wife took exactly 2 hours to locate the perfect box in a local op shop for $2.00. ( A picture is included at the head of this article.)

I began depositing my little slips of paper containing my fears just weeks prior to the investigations that revealed the full extent of my serious condition and the surgical suggestion that could (and has done) saved my life. It was during this period that a volunteer chaplain visited me in hospital and seeing the “God Box” at the head of my bed asked me about it. After I told my story she was amazed and delighted and then commented by asking if I included any “Thank You” notes among the little pieces of paper I was depositing. It was then that I realised with embarrassment that my little notes were all one way with no such words of gratitude given by me, I fixed this issue straight away.

Readers can choose what they say or think about my story here but I can say for myself that my “God Box” came about as a suggestion from a friend during a dark period of my illness. This little box changed my life at the time and continues to do so. It gave me great comfort and hope while easing the fears, the stress and despondency I was feeling. From the time I accepted the concept of my little box and proceeded to deposit my little notes, my health outlook took a turn for the better. I believe that little box entered my life at just the right time and brought about changes that resulted in my successful surgery. It also reinvigorated my spiritual awareness.

Some Good Advice

Some Good Advice

I originally thought this was quite a unique idea that my friend suggested to me but I have since discovered the concept has been well-known and used for hundreds of years by many religious faiths. I have included a few links to web sites for readers who may be interested in further reading. I decided to write this article in the hope that the “God Box” idea might be of interest and give comfort to other chronically ill patients or their carers doing it tough out there. “Thank you God”

Further Reading

http://theuntoldstory.guru/2014/08/25-ways-to-use-prayer-boxes/

http://www.theglobeandmail.com/life/relationships/the-god-box-transferring-your-troubles-to-a-higher-authority/article4210039/

http://www.realsimple.com/work-life/family/relationships/inside-god-box

 

 

Regards

Lee aka Popeye

The Final Chapter For Relief From My Gross Haematuria

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Some health at last

Some health at last

Well it has taken me a little while to recover sufficiently from my surgery to be able to report progress back to my readers, however here I am. Firstly I would like to thank all those friends and family members who phoned me with personal support and best wishes prior to the surgery. I really appreciated those calls and they helped me feel not so alone, I took those wishes with me into the surgical theatre on the morning of my procedure. So here then is the final chapter (I hope) of the resolution of my gross haematuria.

I mentioned in my last post that I underwent an MRI scan for an updated analysis of the bladder and what was left of my prostate gland. This MRI was undertaken on a machine that was new to the Townsville area and was not covered by medicare and the full cost had to be payed by me. This technology should be interesting for men facing a biopsy for prostate cancer as it was a 3 Tesla multi parametric MRI, The resolution and findings of which I was to find out was truly amazing. The MRI images were so clear even I could see the problems and the report indicated just how bad the condition of the bladder was. however the MRI report also identified and graded the remaining cancer tumours from T2 to T3a in various parts of the prostate including the bladder neck. It ruled out tumours in the lymph glands and ureters. All this MRI information was confirmed as correct in the pathology report after completion of the surgery. So perhaps we have a new tool able to screen men that is not as invasive as the current biopsy protocol’s.

The operation was major surgery taking nearly eleven hours to complete and included the removal of the bladder, prostate gland, lymph glands and biopsies of the ureters and appendix. It also included the formation of a stoma using part of the ileal conduit from the bowel. Recovery is slow but I am so thankful to have been given this second chance and an escape from the fear of the blood clots and blockages I was experiencing. The fact that all remaining identified cancer has been removed gives me confidence that I will enjoy many more years of health although I recognise that there is no guarantee’s against the cancer returning in the future. At least I feel like I now have a future as such. I was in such a bad way prior to this surgery and heading downward rapidly that I feel without this procedure I would have died from the complications of the haematuria in a short time.

My story is now told and hopefully will remain on this web site for any other poor soul who may be unlucky enough to be on the same road. My cancer experience and treatment with radiation is a rare experience for patients but none the less remains a possibility as I am testament to. I have been lucky enough to have found a urologist who had the skill sets and experience to successfully tackle the operation on a patient after radiation treatment to the pelvic area and to him I will be forever grateful. I am happy to discuss my little adventures to anybody who seeks any further information. Here’s looking at life!!!!!!

Merry Christmas

Merry Christmas

As the year is ending while I am still mending I would like to take this opportunity to wish everyone a stress free and happy Christmas and a healthy prosperous 2015. I will hopefully be back in touch with this site early in the new year.

And a Prosperous Healthy New Year

And a Prosperous Healthy New Year

Lee

aka

Popeye

Written by Lee

12 December 2014 at 5:26 am

Posted in PERSONAL

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

 

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