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April 5, 2017 at 1:53 pm #8739marysueParticipant
Randy’s post regarding a person’s sensitivity to using chlorine to disinfect after BCG treatments has given me more ammo in my bid for anyone to consider the idea of people doing BCG treatments in a hospital or clinic instead of at home.
In Calgary, the majority of the time patients are expected to go home with the BCG inside them and do their rotissiere chicken act on their beds for the 2 hours and then deal with voiding out into their own toilet and do the bleach disinfecting.
For me this raises several issues;
1) If you have any distance to travel from the BCG clinic to home and you have to travel on major roadways and get into an accident you may be putting yourself and any emergency personnel at risk for exposure to the BCG especially if you are knocked unconscious and can’t tell anyone.
2) If you are unconscious and the BCG is still inside you, hospital staff will not be aware that you’ve got this inside and it may stay in there too long and cause problems.
3) For myself and others, we’ve had issues holding the BCG on the way home due to our bladders cramping. I know of people that have lost their treatments which is a waste of precious health care dollars and puts the patients at risk because they weren’t able to hold the treatment.
4) I’ve also been concerned about people that have to come in from out of town to do treatments and are staying in hotel rooms – what risks are being posed for hotel cleaning staff after a person has used that room?
5) In homes where there are small children – it is necessary to keep the bathroom clear for several hours and to keep the bleach out of reach – I’m always concerned about stuff like this.
6) Sensitivity to chlorine – like in Randy’s recent post; some people have issues with using this chemical – we need to find suitable substitutes.
7) What environmental risks are we posing when we are flushing the BCG down the toilet even after using bleach?
If we were to be consistent about doing these treatments in a hospital setting we would eliminate a lot of these problems because the hospital would be able to dispose of BCG initial voids in their biohazard. We would then probably need to do less of the bleaching at home. I’ve talked to hospital staff. Some agree with me but don’t have the authority or the resources to do anything about it. I personally would like to see changes before something serious does happen.
Thoughts people? ((((((HUGS)))))
April 5, 2017 at 4:26 pm #21537SJayParticipantI was told by a Fellow who did some of my BCG treatments when the nurse was on vacation that walking was as good as rotating while laying down to ensure that the treatment was reaching all internal surfaces in the bladder. It makes some sense as the bladder has no air in it, so it isn’t like a partially filled bottle that needs to be turned to reach all internal surfaces. What needs to happen is that all the folds in the bladder get opened up so the fluid can reach everywhere and that there be some amount of motion to mix the fluid so that all the fluid gets to the bladder wall at some point. I would like to know if all this is true as it would make a very large difference to whether this could be done in hospital or not.
If true, patients with BCG treatments could walk around in the hospital area without the need for taking up a bed. They could carry a special bottle to urinate in using a regular hospital toilet stall or return to a specified area used for this purpose. There wouldn’t be any need to disinfect a toilet. The filled bottle would be given to the hospital staff for disposal.
Those prone to early voids could stay close to where they could get rid of it, but walking might also help them keep the treatment in.
I think this would answer all of the above concerns. An idea on how this could be investigated?
April 5, 2017 at 5:46 pm #21538marysueParticipantHi SJay:
You raised some interesting points and ideas. I have no idea about how to go about investigating it at this time but will keep my eyes and ears open for opportunity.
As for the debate about laying down while doing BCG – I’ve heard that argument too about walking around is just as good. My counterpoint to that is that if you are upright and walking around the BCG is sitting at the bottom of your bladder. You are only instilled with about 50ml which I think equals a quarter cup of liquid. This idea may work for some people if they are able to hold it and jiggle about. I know it wouldn’t for me because the cramping was worse when I was upright. When I did my first round of 6 at our city’s cancer clinic I partially lost 2 of my treatments on the short walk from the clinic to the car. I had to lay down in the back seat while my hubby drove us home. I always had to lay down and apply heat to my abdomen to stop the cramping and be able to hold the treatment.
When I had to do my second set of 6 plus the 9 maintenance treatments, I did get to stay at the clinic for the two hours. They would instill the drug and leave the catheter in. When the time was up, they’d attach a floor bag. I’d stand and let the urine drain out. The nurse would remove the catheter when I felt I was empty and dispose of it in the Biohazard. I drove myself there and then my hubby bussed it to the hospital from work and drove me home. This clinic was located in the very back of the hospital and it was a good 10 minute walk to the parkade. I had to negotiate with the clinic manager to book a bed. The drive one way to or from this hospital is 45 minutes on a good day. At that time all possible routes I could take home from the hospital were under some form of construction resulting in at least a 90 minute trip one way. That coupled with my retention issues, and it being mid winter with -30C temps, slippery roads and rush hour traffic made it extremely difficult and I felt very risky for me to be on the road with BCG inside me.
I also feel that it is more risky for women too. Guys can just go in a bottle or container if they can’t hold it but how is a woman to pull over on the highway, try and squat over some container and maintain privacy and do this in winter driving conditions?
Also, unlike a lot of people I feel the side effects of BCG right away. Within a few minutes of instillation I am loopy, headachy and would be a menace to others if I was driving which is why my hubby came to get me. That being said, I do know of people that have no issue and can get themselves to and from the hospital with BCG in them.
I think the reason I’m raising this issue is because I feel if the nurses are dressed almost in Hazmat like gear when doing our treatments, what business do we have of traipsing about in public and possibly putting ourselves and others at risk if there was an accident?
Anyhow, just more thoughts….(((((HUGS)))))
April 5, 2017 at 6:16 pm #21539SJayParticipantI don’t know if it is correct to say that the fluid is just sitting at the bottom of your bladder. Fluid should fill the entire bladder because the bladder shrinks down. The only issue is that in the shrunken state there are folds and places where the opposite walls touch which would prevent the fluid from reaching some parts of the bladder wall. That is why some motion is needed to open up the folds. Anyway, that’s why we (or BCC) would need to convince some urologist to investigate to find out for sure what happens.
I think you missed my primary point, which was that if you don’t need a bed (because you are walking around) and aren’t taking up staff time the hospital would be able to accommodate you and you would not have to travel. You could stay in the hospital, maybe even in the urology area, until you voided the BCG.
It may not work for everyone, but perhaps would work for most.
April 6, 2017 at 2:12 pm #21542FergDevinsParticipantI also had similar advice from the nurse that last couple of BCG treatments. Her suggestion was “go home and carry on like you would normally, walk, work in the garden, do the things you need to do”. She said that the BCG would naturally work in the bladder. However, having read so many articles about the “basting approach”, I still did that feeling that all of the readings certainly pointed to that success for many years. The other advice that I thought was the best advice was “drink like a fish”. That certainly helped me be free and clear with urine by end of day. You raise very good questions about the javex down the toilet etc. Fair questions…not sure that we have got an “expert response” here yet. Be well. FERG
Ferg Devins - Survivor and Volunteer Chair Bladder Cancer Canada
April 6, 2017 at 10:31 pm #21543Paul DParticipantHi all and another side to the BCG debate from a country where they administer the BCG treatment and keep you in hospital for the duration and then dispose of the fluid in their Bio waste, we are dealing with some very toxic and highly contagious fluid here and the nurses don’t wear the P.P.E for no reason when they are treating us. Here in Australia we have just had a man infected with T.B who came back from Cambodia with it, well the public outcry was immense and could you imagine if that was one of us well the politicians would soon change the system of BCG treatment to make it safer for the general public. I wish you well Marysue in your endeavours to change this system and as I have said to you before if I can help in any way let me know, the BCG treatment system you have in Canada requires changing.
Love & Best Wishes to all,
Paul D.April 6, 2017 at 11:01 pm #21544Jack MoonKeymasterMarysue
I would suggest the following, as no one here is a doctor and no one is affiliated with the BCG manufacturers.
Send a list of your questions and concerns to Tammy at BCC. Ask her to forward your questions and concerns to the BCC Medical Advisory Board.
I can assure you that your questions and concerns will be answered.
I do know the answers to some of the questions, but would prefer a qualified medical professional reply.
All the best,
JackApril 9, 2017 at 3:40 pm #21549marysueParticipantHi Jack:
Thanks for this advice. That is something I should have thought of. I will send an email off to Tammy in the very near future. It will be interesting to see what the Medical Advisory Board has to say.
The reason I posted here was to see if anyone else was thinking similar thoughts to me or was I completely off the wall. Apparently there are issues so as mentioned I will bring my concerns to the Board. ((((((HUGS))))))
April 28, 2017 at 7:38 pm #21623LMParticipantHi MarySue,
These are very good questions and points you bring up, certainly things I’ve been wondering now that BCG treatments have been prescribed. I also appreciate your sharing the potential for discomforts and “spilling” along the way home; while I am (normally) no more than 15 minutes from home, maybe arranging to have hubby or a friend drive me home (particularly the first session) is not a bad idea (and not something that was suggested either by my Urologist or the IV nurse in charge of scheduling). Thanks so much for sharing your experience and considerations. 🙂April 29, 2017 at 9:43 pm #21632marysueParticipantHi LM:
I also wore a thick TENA or Poise bladder protection pad for several hours so if I leaked even post treatment I didn’t have to worry. I would dispose of the pad in a Ziploc bag in the trash.
This has raised another question in my mind – should BCG patients have a place to dispose of their pads, medical gloves etc.?
I sent a letter with my BCG safety concerns to the BCG clinic here in Calgary but the only reply that I got was that if patients were concerned about retention or the drive home with BCG in them, they were welcome to book a bed at the clinic. They don’t concern themselves with matters outside the hospital. Not their jurisdiction. So, I’m back to square one.
So for now, I figure that everyone should just do the best they can with what they have. And yeah, if you figure for safety reasons, Liz I do suggest that you have someone drive you to and from your treatments.
For my first 6, my hubby took the morning off work to get me to and from the clinic. My bladder hates intrusions so I had to lay down on the back seat to ease the cramping while my hubby drove us home. At that time it was only a 15 minute trip.
The second 6 week round and following rounds were at a different place so I drove myself there and then he met me there and drove me home. For the second location, the hospital is in the far south of the city – a 45 minute one way journey on a good day, I was allowed to stay at the hospital since I did have retention issues/severe bladder cramping and it was also in the middle of winter with bitter cold, slippery roads and those said roads were under construction in a lot of places. I had to go through the clinic manager and hospital ombudsman to arrange it. Since then, the clinic has relocated to a different part of the hospital and is its own unit and they do have the space for a couple of stays at a time. I think the nurses have realized that it is very difficult for some of us.
You may be alright. Lots of people manage just fine especially if it is just a short ride home but as mentioned I suggest wearing a bladder protection pad in case of leaks. Best of luck going forward. ((((HUGS))))
April 29, 2017 at 11:43 pm #21634LMParticipantHi Marysue,
Thanks for these suggestions, especially the Poise pad (what did our parents and grandparents do without such luxuries?) . In terms of getting home, guess I’ll just have to wait and see how the old body responds. We live in a condo and park underground; then there is quite a walk to the P-level entry and a wait for the elevator before getting up to our floor – – no wish to drip along the way….. This health issue is DEFINITELY not something to talk about with casual (or even some good) friends. But I’ve just found out that there is going to be a YELLOW march in our community this year so maybe that will be a way to meet others who are living with this unmentionable disorder…
Best regards.May 16, 2017 at 9:28 am #21667Paul DParticipantMarysue the one thing hospital admin people worry about is cost, if people like us are voiding BCG within the hour which is the minimum time requirement on the way home then its not cost effective. After the cost of the BCG drug and cost of inserting then for someone to void before the BCG is effective then they have to look at an alternative method.
Wish you well Sue.
Paul DMay 17, 2017 at 4:31 pm #21677marysueParticipantI did finally hear back from the BCG nurses at our hospital here in Calgary. They offer a bed to those patients that have continence issues and have any distance to go, but don’t concern themselves with what happens outside the hospital. I’m assuming from their reply that if they did try to get involved with that issue it would have some kind of political and legal ramifications for them. Medical politics I guess.
So……I’ve hit a complete brick wall with this and it seems that BCG patients have to fend for themselves. So thoughts anyone? (((((HUGS))))
May 18, 2017 at 11:23 pm #21679Rick BParticipantHi,
I’ve had similar challenges after BCG Instillation. My drive home was nearly 90 minutes so I decided to book in at a low cost hotel within 15 minutes from the hospital. That worked out great…my wife and I decided it was our weekly date night…:) :). Seriously, it got us out of the house for the day/night, had a great diner and it sort of kept my mind off the issue. I realize that it is not always possible to do what we did because of family commitments, work, etc. When I received BCG, both my wife and I had retired and did not have a young family or anyone at home depending on us.If my comments may seen off…my thought is this; Provided our medical services otherwise are providing a good quality of life dealing with our issues, if there is anything I can do to help myself and the hospital staff then I’m going to do that. Since my post BCG instillation was manageable provided I followed the procedures provided, we felt we were contributing our part and maybe helping the hospital staff by providing them more time to deal with more urgent situations.
Wishing everyone well…god bless.
Rick
May 26, 2017 at 9:11 am #21691Paul DParticipantMarysue any chance you could get your Calgary MLA representative involved and raise it in Parliament? Important issue for a lot of people.
Love and Best Wishes
Paul -
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