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Worry about meeting the consultant on Monday

User
Posted 20 May 2022 at 07:17
It doesn't really take all day. Removing the catheter takes about 2 seconds 😁. You then, though, have to drink lots of water and show that you're able to pass water (three times in my case) before they let you go. It's that part of the process that tends to take several hours.

Glad to hear that the surgery went well.

All the best,

Chris

User
Posted 20 May 2022 at 08:27

DW, hope all goes well with the recovery, make sure he takes it easy but keeps mobile. It is good to avoid getting constipation and no straining to pass that first motion.

I have had around 12 trial without catheter and never failed.  Mine never took longer than five hours, usually they have been around three hours. To speed things up I drink plenty of water before getting to the hospital, I find that if i am well hydrated before getting to the hospital the water they give me to drink at the TWOC passes through me far quicker. It is better to leak a bit than have a catheter put back in because you failed the TWOC.

Make sure you have some pads, the hospital will normally give you some, but as a work colleague used to say better to be looking at some than looking for some. I took a towel and cover for the car seat in case of a "major" leak but it never happened. I also had a urine bottle in the car in case of an emergency. The towel is useful if stuck in a traffic jam with a coachload of people at the side of you😀. A spare pair of trousers and pants, again never needed. Elasticated waist trousers make it very easy to change the pad in a hurry. 

Hope all goes well.

Thanks Chris

 

Edited by member 20 May 2022 at 09:24  | Reason: Spelling

User
Posted 20 May 2022 at 11:33

DW, don't be surprised if he bypasses a little urine and a trace of blood out of the the penis. It often happened to me when passing a motion, a bit of tissue under the penis while sat on the toilet helps save wet underwear.  I was told Rosé colour in the bag should be okay but red wine colour needs attention. Don't forget to adk for some instilagel in case the catheter makes the penis sore. 

 

Get a couple of extra thigh straps, use one around your ankle to secure the night bag tube when in bed, it saves putting any strain on the bag joint. Make sure the catheter joints are tight, and make sure the leg bag tap is shut before disconnecting the night bag and don't forget to open the leg bag tap when you attach the night bag.

 

The extra thigh straps are useful when showering. I empty my bag a let it hang on the thigh strap ,when i finish showering I put a dry strap on the other leg and transfer the catheter and bag to the dry strap. Some hospitals use adhesive catheter fixation devices so the strap idea would not apply , the statlock adhesive device id waterproof, they should be changed after 7 days but will last for 14 days.

 

Make sure you empty your day bag before it gets more than half full. 

Thanks Chris

Edited by member 20 May 2022 at 11:40  | Reason: Not specified

User
Posted 20 May 2022 at 16:13

Originally Posted by: Online Community Member
Mine took over five hours. It was nerve sparing one side

Cheers
Bill

Sorry  I should have been  clear the RARP took over 5 hours

The TWOC was done by the district nurse. She came round in the morning, I actually removed it myself under her supervision because I wanted full control if there was pain or resistance while getting through the new anastomosis. She left a log sheet and I recorded quantity of water in and water out then she returned later that day to check urine left in bladder after a pee with ultrasound. 

Good luck to your OH with his

Cheers

Bill

Edited by member 20 May 2022 at 17:43  | Reason: Not specified

User
Posted 20 May 2022 at 18:32

Glad the op is all over. Not too bad 3 months from diagnosis to treatment. I assume TWOC is about two weeks time. A catheter isn't much fun, though I found it quite useful when at the pub. Hope all goes well.

Dave

User
Posted 20 May 2022 at 23:15
Glad the op is over. Small steps now and wishing you both well x
User
Posted 21 May 2022 at 08:27

Absolutely not! My hubby and I (who is now 74) have had a very active life post his treatment. His PSA was 87 at diagnosis and he required radiotherapy and hormone therapy. Since then we’ve largely managed to enjoy active lives - we don’t fly as much as unfortunately his bowels were affected by radiotherapy so we go on cruises instead. 
with regards impotence- it’s taken nearly 9 years for hubby to accept help from a nurse specialist- I don’t think we were really supported by the first hospital that treated him, but now getting loads of support. 

User
Posted 21 May 2022 at 12:21

Wish the urologist had never mentioned RARP, OH is still stuck in hospital, he is in utter despair, they are not letting me see him and they are not doing anything for his mental health.  He was supposed to come home yesterday, delayed due to a slightly raised temperature.  He does not think he is going to come home today as apparently they have been waiting for his medications since this morning.

What an utter nightmare. 

User
Posted 21 May 2022 at 14:02

Trying to get discharged on a weekend is a nightmare. I went in Friday before a bank holiday and was due out Saturday. I had a minor problem and it was looking like they were going to keep me in until Tuesday just because there was no senior doctor to sign me out. Fortunately it was resolved and I got out in the afternoon.

Dave

User
Posted 21 May 2022 at 14:07

If his temperature is raised, that could indicate an infection, in which case he will be better off in hospital where it can be properly treated. Hospitals are full of pathogens! But his prostate is no longer there, so his cancer is no longer there, and the oncologists can look at it and make a fuller evaluation of how developed it was. So, reason to be cheerful ...?

As to not letting you see him, I thought the rules had been changed nationally to stop hospitals from preventing family members from visiting patients? I might be wrong about that, but I feel that I read that somewhere weeks ago, and if you can show that you are covid-free ....? https://www.sth.nhs.uk/visitors/visiting-times

Hospital pharmacies are notoriously slow in delivering medicines. I was in hospital with Lyme disease some years ago, and it took 4 hours for the pharmacy to deliver my month's supply of doxycyclin before I could be released! It's usually too few staff, too many patients needing drugs.

Edited by member 21 May 2022 at 14:24  | Reason: typos! I can spell, I just can't type.

User
Posted 21 May 2022 at 14:12
DW that is not a nightmare, the real nightmares can still happen ...
User
Posted 21 May 2022 at 14:46

My husband stayed in an extra day but it actually worked out well as he was a bit further on with recovery when he came home, so I didn’t have to worry quite as much. If your husband comes home with a temperature surely that would cause concern for you both, he’ll definitely be better where they can look after him. I know it’s really difficult if they won’t let you see him though. We just had to video call and on one occasion I walked to the hospital and waved to him at the window while speaking on the phone ❤️ Hope he’s home and well soon, best of luck with recovery 

User
Posted 21 May 2022 at 17:07

Hi Hermit of Eyam, the rules have been changed, but just because the rules have changed does not mean that hospitals follow those rules.  On our hospital web-site it said I can visit him for 1h/day but they only apply that to wards like maternity etc.  

But what really is confusing is that yesterday I was not allowed to visit him but today I was invited onto the ward to go through all the discharge papers and medicines with OH and a nurse prior to pick up sitting in his room 

User
Posted 21 May 2022 at 17:09

francij1, I know that an awful lot can still go wrong in the next 10 or 20 years 

 

User
Posted 24 May 2022 at 16:28
I hope someone is looking after you too DW xx sending love
User
Posted 24 May 2022 at 20:02
I'm not sure why an extra day in hospital would be a nightmare? Surely it's better to make sure that any potential infection is dealt with before he's discharged, isn't it? I quite enjoyed being in hospital, strange though it may sound!

Hope things are better now?

All the best,

Chris

User
Posted 25 May 2022 at 05:54

Hi Chris, food was one issue and OH really wanted to come home as he did not get any sleep there - each time he fell asleep nurses woke him up to take his temperature/blood pressure etc.   

User
Posted 18 Jun 2022 at 17:59
Hi, OH had the catheter removed 1st June. Totally dry at night but getting very frustrated during the day. Needs 2 to 3large pads depending on how active he is and he really likes to be active. He does PFs regularly. Any advice how to help him? Thank you
User
Posted 18 Jun 2022 at 19:21
He needs to be patient - there isn’t any magic thing that will speed up recovery. If he is dry at night, there is no mechanical damage so it is just about his brain relearning bladder control.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jun 2022 at 22:36

I was probably about the same at that stage after catheter removal. A long walk would gradually cause my bladder virtually  empty  Being on your feet and active for long periods (walking,  gardening etc) are the hardest hardest to master. I'm now eight weeks down the road. I'm not there yet but I'm still gradually improving. I can now do a 12 mile walk and not worry about a pad change. I do all my pelvic floors in the standing position. I think that helps. Chris.

User
Posted 19 Jun 2022 at 09:45

After my catheter was removed it took about 8 weeks before my daily incontinence greatly improved. As mentioned by Chris, going for a long walk resulted in me having virtually no bladder control at all.Each leg forward movement resulted in a leak and meant that when I returned home my pad was soaking wet and my bladder probably completely empty. And as mentioned by Lyn, and as advised by the specialist nurse assigned to me, the brain needs to relearn how to control the bladder following the damage to that area. It is frustrating, but for me and for the people I personally  know that have undergone surgery, virtually full bladder control does eventually return. In my case it was an almost overnight experience after about 10 or so weeks when my continence improved to 99 % plus . I only leak a little now when I am lifting a very heavy object.

 

Ivan

User
Posted 12 Jul 2022 at 19:40
Finally getting the pathology on Tuesday _ delay due to holidays. Will let you know results

. In the mean time e I have a question as I an not sure it is worth asking the surgeon. When OH came home from hospital he had a massive bruise on his left side and whenI say massive I mean from his armpit to his hip and half of his front and back except for a belt round his waist ofa good inch.took several weeks to go and looked as if he had been a substitute for a crash test dummy. Is that normal? Thank you

User
Posted 12 Jul 2022 at 21:02

DW always worth asking questions to put your mind at rest.  I belong to a PC Facebook site and a woman has asked almost identical questions about a bruise from the armpit to hip. I did find a reference to bruising appearing remote from the surgery site, but worth asking the surgeon.

Hope the histology is good.

Thanks Chris 

User
Posted 13 Jul 2022 at 08:55

I had no bruising at all after surgery, only a slight redness around the areas of the 7 puncture wounds.

 

Ivan

User
Posted 19 Jul 2022 at 10:30
Phone call with the surgeon this morning. Good news - all margins are negative, bad news - because of what they found during the OP no nerve sparing at all. I asked about it but did not get a clear answer. Will press for full explanation in the next eeting after PSA results

Question as there was no nerve saving is there any point seeing the ED nurse?

User
Posted 19 Jul 2022 at 10:39
Yes absolutely! It will be essential to maintain penile health with a vacuum pump (if your CCG allows these) and if the ED nurse writes to your GP requesting that they prescribe, it is more likely that you will get it than you just asking the GP yourselves. The same applies when he is ready to try injections - support from the ED nurse makes the whole thing smoother.

Also, it will vary depending on the personalities but I found our ED nurse to be a huge support to me as well as John.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2022 at 12:18

DW, I was supposedly non nerve sparring, but not long after surgery I did get some stirrings in the penis. I was reminded on here that if all the nerves had truly gone then an erection was impossible without a pump or putting something into penis . My surgeon suggested that there were a network of nerves in the area and something could be getting through. 

Get the pump, tablets, creams , injections and anything that may be on offer. My ED guy is also a surgeon and a brilliant guy. I was offered, medication because of the stirrings, the pump and injections at my first appointment. I opted for muse pellets instead of injections. The muse pellets is a cream that you put down the eye of the penis with a thin plastic applicator. It took me five years to move on to injections, in hindsight a mistake.

I don't think I will ever get an unaided erection, but eight years on I still get the odd semi erection. You don't need an erection for vaginal intercourse, look up flaccid intercourse or flaccid insertion. We have a very fulfilling love life , think outside the box and above all have fun.

Good news on the margins, hope all goes well for you both.

Thanks Chris 

 

https://community.prostatecanceruk.org/posts/t10993-Erecting-the-Erection---Medication

Lyn also did a thread on sexual recovery but I can't find it.

 

 

Edited by member 19 Jul 2022 at 12:24  | Reason: Not specified

User
Posted 20 Jul 2022 at 18:25
Saw the ED nurse today, OH got a pump on loan to see how he gets on with it and if he likes it he will be given his own to keep. That actually makes sense.

Otherwise I am even more confused as the nurse is of the opinion that the doctor would not have prescribed Viagra unless he was able to spare nerves,but she was unable to check as they use different systems - the doctor a Computer and the nurse writes everything down by hand.

She is a youngster, early 30s.

User
Posted 20 Jul 2022 at 20:01
The ED nurse is likely to know better than the urologist - it is her specialist area!

Did the surgeon prescribe the viagra before the op? Perhaps didn't anticipate removing ALL nerves?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jul 2022 at 06:08

Viagra was prescribed when OH left hospital, but it was not the urologist who told OH no nerve sparing was done, but the surgeon.  I assume he knows what he did. 

User
Posted 21 Jul 2022 at 08:15
The surgeon is a urologist
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Aug 2022 at 10:38
Hi all, having a Telephone conversation with the urologist 5th Sept.

to get the 1st psa test result and info if any change in staging or Gleason. OH told me that just as he was wheeled into the operating theater he was told they may not be able to do nerve sparing due to space issues.should that not have been checked ealier and he been told about this?

Also the ED nurse prescribed cialis for erections as far as I am aware that only works if nerves are present. Should she not instead offer muse or somehing like that as a start?

Or do they start with the cheapest option and let the patient get discouraged to go away

User
Posted 12 Aug 2022 at 10:59

Originally Posted by: Online Community Member
...should that not have been checked earlier and he been told about this?

I'm sure he will have had to sign a consent form and it will have been on there and you will have been made aware of all the risks. The problem is that when people have cancer they don't want to listen to warnings; they are too concerned with just getting it out.

Originally Posted by: Online Community Member
...
Also the ED nurse prescribed cialis for erections as far as I am aware that only works if nerves are present. Should she not instead offer muse or somehing like that as a start?
Or do they start with the cheapest option and let the patient get discouraged to go away

I think you are right Cialis only works if nerves are present. A few others have posted about it working unexpectedly so worth a try.

You can be fairly certain they do start with the cheapest and work up. I did read once that as far as dosage is concerned they start at the max and work down to avoid discouraging the patient. I think you will need persistence.

Dave

User
Posted 12 Aug 2022 at 11:33

DW, as a supposedly non nerve sparring patient I was offered the injections and pump at my first ED meeting. I didn't fancy the injections so opted for the muse option, five years later I went onto the injections, they are far more effective and reliable for me. I was having some stirrings a few weeks after surgery so my ED guy prescribed daily 100mg sildenafil.

Obviously the post code lottery again.  Never give up and have fun.

Thanks Chris 

User
Posted 12 Aug 2022 at 12:34

Originally Posted by: Online Community Member
Hi all, having a Telephone conversation with the urologist 5th Sept.
to get the 1st psa test result and info if any change in staging or Gleason. OH told me that just as he was wheeled into the operating theater he was told they may not be able to do nerve sparing due to space issues.should that not have been checked ealier and he been told about this?

Also the ED nurse prescribed cialis for erections as far as I am aware that only works if nerves are present. Should she not instead offer muse or somehing like that as a start?
Or do they start with the cheapest option and let the patient get discouraged to go away

I think the reference to space would be 'space between the edge of the cancer and the nerve bundles' not 'space in the operating theatre'. I think your first urologist indicated that the op would be unilateral nerve sparing and later in the thread you posted that a urologist had indicated that it may have to be non nerve sparing. 

The cialis won't help with recovering erections if he has had all nerve bundles removed but it still helps with general recovery from the op as it encourages oxygenated blood into the pelvic area. Hopefully, the next time you see the ED nurse she will have received his post-op details. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Aug 2022 at 13:06
Hi Lynn, in this case neither is correct. The original urologist said full nerve sparing on the left and they would try to spare some on the right. This was confirmed by the surgeon until the op. The space problem was in his pelvis,

User
Posted 12 Aug 2022 at 13:49

Originally Posted by: Online Community Member
OH told me that just as he was wheeled into the operating theater he was told they may not be able to do nerve sparing due to space issues.should that not have been checked ealier and he been told about this?

Since this may have been a significant factor in treatment choice, I would say that giving this information at that late stage is completely unacceptable.

User
Posted 12 Aug 2022 at 18:06

To say it would have made a difference is a serious understatement. I would have refused to drive him to the hospital especially in view of the fact that the day before he got a text setting up a telephone consultation with Mr x from uclh

User
Posted 12 Aug 2022 at 22:51

Originally Posted by: Online Community Member
Hi Lynn, in this case neither is correct. The original urologist said full nerve sparing on the left and they would try to spare some on the right. This was confirmed by the surgeon until the op. The space problem was in his pelvis,

I have checked your previous posts - you will find them on page 3 or 4. You posted that one uro said nerve sparing on one side only and the other said it would be non nerve sparing. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Aug 2022 at 23:27

DW his cancer diagnosis started when he went to the GP with ED problems, since then every man and his dog has been poking and cutting his prostate and a few wanted to shoot it with x-rays, and some wanted to freeze it and others wanted to ultrasound it in order to boil it.

I don't think it mattered much how they treated it, a boner was not going to be forth coming at the end. 

So now you need to see what fun you can have together with a flaccid penis, and if it ain't much fun you're going to have to think about all the tablets (which won't work) the injections which might work, but will ensure no spontaneity, the pump which will probably just be for comedy value, and eventually after about 7 years of fighting the bureaucracy a penile implant, which probably will work. 

At some point you might have to get him involved in the decision process too.

Dave

User
Posted 13 Aug 2022 at 07:27

Regarding the decision process I am more in the nature of a secretary as I leaned type in the distant past. Otherwise pre OP tablets actually worked a treat once somebody actually read the instructions and that is what we both want back.  

Yes, he is having orgasm without an erection once I managed to persuade him to try it, but OH wants more and so do I. 

As the NHS ED nurse started with a treatment with no chance of success I am going to call the prostate UK specialist nurse and ask for a recommendation for a private ED clinic 

User
Posted 13 Aug 2022 at 09:09
You are jumping the gun again; the ED nurse has done nothing to warrant you deciding that she is no good. She has provided a vacuum pump and tablets before you have even had your post-op consultation - I would say that is pretty amazing in comparison to many areas.

I am not sure why you had a problem with her being in her 30s but since he has no nerve bundles, there is a possibility that the vacuum pump will be your best chance of penetrative sex in the future.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Aug 2022 at 16:05

Hi Lynn  please accept my apologies for any misunderstandings, but please understand that as a non native English speaker my choice of words may not always reflect my meanings.

OH had RARP 19th May, left hospital. 21st May with a prescription of 4 viagra. TWOC 1st June and left with a prescription of viagra for 3 month to be taken daily. 

1st telephone consultation with urologist 18th July, got told all margins negative, doc pleased with progress regarding incontinence I.e down to 1 large pad day

1st meeting with ED nurse 25th July. Very nice young lady. Bit shocked at her archaic record keeping I.e. filing cabinet, folders and hand written notes. As she had arranged the 3 month supply of viagra she was convinced that the surgery was nerve sparing and prescribed extra tadafil? For special occasions

2nd telephone consultation with urologist 5th Sept. about PSA. Questions to ask are Gleason score and staging changed? Is the fact that OH was badly  bruised on the left whole side from hip bone to armpit of any significance? Is there anything we need to watch out for?

2nd meeting with ED nurse 25th Sept. The only problem I have with this is that it is 6 weeks away

 

 

User
Posted 13 Aug 2022 at 17:53

I had RP one month before your husband.   It was also non nerve sparing. 

I found Dr Mulhalls book " Saving Your Sex Life,  A Guide for Men with Prostate Cancer"  useful for understanding the context for various treatments.

Personally I am using daily Sildenafil/Viagra and Caverject injections and I got these prescriptions from my consultant (using Sildenafil on days when not using Caverject).  The Sildenafil is a long shot just in case some nerves work.   I am still working on the correct dosage for the Caverject -  it performs well but with too high a dose it is painful.   In the UK you can get Invicorp which many on here say is better.  

In the book above it is suggested that blood flow to the penis is key and that the injections are much better than the pump for this.

 

Edited by member 13 Aug 2022 at 17:55  | Reason: Not specified

User
Posted 13 Aug 2022 at 19:00

The beauty of the pump is that it stretches the tissue and keeps it elastic and costs nothing to you medicine wise. The side effects of viagra and Cialis can be unpleasant. You’re correct in that it doesn’t cause blood flow as such , but it does maintain healthy elastic tissue. Way more than injections as they would have to be so more frequent.
I tried it all literally. Still use Cialis 7 yrs on though incurable. Still wake up with a semi which means it’s working stimulating blood flow to extremities. Still use pump 3 times per week whilst shaving. He still looks great and can be relied upon despite 20 months of HT which is a fine result compared to most men on HT.

Edited by member 13 Aug 2022 at 19:01  | Reason: Not specified

User
Posted 13 Aug 2022 at 21:16

What would I give for a semi :-) 

From what I have read in various medical literature the optimal approach is injections (at least 2 per week)  combined with Sildenafil.  Apparently the reason the VED is suboptimal is that it is recirculated old blood instead of drawing new blood into the penis. 

Ref Scardino: “VED’s do not produce an actual physiological erection and therefore don’t promote the circulation of fresh, oxygenated blood.   Therefore, they may not help avoid fibrosis [scarring] after radical prostatectomy.”

That said,  based on your own experience probably worthwhile sticking with the pump for exercise purposes when not using the injections.  Also some folks may not want to or cannot use injections in which case the pump is going to be better than nothing. 

User
Posted 13 Aug 2022 at 22:33

Originally Posted by: Online Community Member

I had RP one month before your husband.   It was also non nerve sparing. 

I found Dr Mulhalls book " Saving Your Sex Life,  A Guide for Men with Prostate Cancer"  useful for understanding the context for various treatments.

Personally I am using daily Sildenafil/Viagra and Caverject injections and I got these prescriptions from my consultant (using Sildenafil on days when not using Caverject).  The Sildenafil is a long shot just in case some nerves work.   I am still working on the correct dosage for the Caverject -  it performs well but with too high a dose it is painful.   In the UK you can get Invicorp which many on here say is better.  

In the book above it is suggested that blood flow to the penis is key and that the injections are much better than the pump for this.

 

J, I looked for links to Dr M and came across the following you tube video, interesting his comments on injections being better than the pimp and the reasons why.  The video is a few years old so not sure if it is still the current thinking. The only downside is he suggests using the injections twice a week and I think most of us only get a prescription for one a week. Some other interesting points raised about having ADT. Hope your recovery continues.

https://youtu.be/4ELsojPFNV8

Thanks Chris 

 

Edited by member 13 Aug 2022 at 22:35  | Reason: Not specified

User
Posted 14 Aug 2022 at 12:59

"Bit shocked at her archaic record keeping I.e. filing cabinet, folders and hand written notes."

That is the decision of her department, she has no control over it. I have just finished an enquiry involving 5 NHS trusts and 2 CCGs. Even within one NHS Trust, departments used different electronic systems that couldn't communicate with each other and 2 teams used paper records. The GP used a system that only one other department shared.

"As she had arranged the 3 month supply of viagra she was convinced that the surgery was nerve sparing and prescribed extra tadafil?"

The surgeon arranged the viagra, not the nurse? I can see why the nurse made that assumption - hopefully, you will have clarity by the time you see her again in September.

Edited by member 14 Aug 2022 at 13:00  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Aug 2022 at 17:46

Hi Lynn, you are correct that the doctor arranged for the supply of Viagra and OH is going to ask about that.

Do different doctors/health authorities interpret QoL differently or is that also depending on the age of the patient? Reason I am asking is the husband of a friend had the op 3 years ago at with a different health authority and even though his cancer had started to break out of the capsule and they deliberately left some nerves knowing there would be positive margins. His age at the time was 55 I.e 13 years younger than OH. 

User
Posted 14 Aug 2022 at 18:11
Sounds like an urban myth - I don't believe a respectable surgeon would knowingly leave behind some cancer. He would risk being hauled up before the GMC and losing his licence. The consent form for RP always says that the nerves may have to be removed if the surgeon gets in there and discovers the cancer is more extensive than expected.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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