I went for my 11th BCG treatment at hospital this afternoon, am feeling tired and fed up,
Eye injection Monday - Today 11am ECG . 2PM this afternoon I went for BCG Treatment number 12 of 15.
So got to hospital South end, nowhere to park, went to main North end - A queue for no parking space - 10 minutes from appointment I just park on hospital grounds Yellow Lines - if they fine me I really don't care.
So went in for treatment and I said to specialist nurse "being I am now low grade, does that mean it won't spread.
I have edited this to cut a long story short.
Seems although my BC is not low grade , it can still spread. I was told this today while having my BCG treatment.
I am allowed 4 more then treatment will be just observation with TURBT ( Cystoscopy) - I am seeing GP Tuesday to see her opinion that RT would not help.
As a BTY my paining of a Tropical sunset will be posted Sunday.
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Ern007
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Hospital parking is a nightmare everywhere. Your situation sounds rather complicated to me Ern. Good idea to talk it over with your GP. I hope that she will be helpful.
Yes I am booked in for Tuesday - It's complicated to me Carole as it's a contradiction. Parking is a nightmare, they need too relax the fines, we have to park somewhere.
I do hope you get some sort of resolution to all this Ern as it’s not right. Why do some say RT won’t help? It might. Good luck chatting to GP on Tuesday and hoping she can help.
Hospital parking is the pits! So very difficult and something needs to be done.
Thank's Carole - My cancer is CIS (Cancer in situ) normally these are aggressive. mine was/is although it none muscle invasive. I asked a harmless question this afternoon " now my cancer is low grade" will that shop it spreading - Exact reply "No - but it is low grade. i will see what GP say. xxx
I suppose nobody can completely guarantee your cancer won’t spread. I’m really hoping it doesn’t just as I’m hoping mine doesn’t decide to return. I’ll remain positive for the both of us. 😘 🩷❤️
Thank you Carole - No I agree they can't guarantee my cancer won't spread - before they told me it was low grade, I was half expecting it would. I believe you would stay positive for us both - You can be sure I am also rooting for you too xxx
the parking sounds like a nightmare, at a time where you really don’t need the extra hassle and be worrying about things like that. I hope the appointment with your GP will be helpful.
Thanks HH - I had to park on double yellow lines, been driving to north and south entrances for ages and my appointment due. Not sure Park wise can get a fix on that, if they can there was 200 plus cars doing the same, My GP is always helpful - To be honest the hospital are confusing.
I'm glad you've had yr treatment + some honest answers, although not the best.yr attitude will get you through.u have had a busy week!I'm looking forward to Yr painting xx
Thank you Pat - just a bit rocked today - I have not touched the painting today, I will be working on the glow tomorrow, I am also doing another painting for a friend at same time. Small canvas compared with the A3 one being used on the tropical sunset, xx
It's understandable Ern.its a lot to come to terms with.Yr under no time pressure here.yr painting will b finished whenever it is.ots a wonder u have found time to paint with all Yr appointments x
Painting helps me Pat - I am not keen on daytime tv - I left it today as I was tired, two appointments one early in a day. I have one appointment with GP Tuesday, just a couple of hundred yards down thw lane from me - then the last BCG - Then nothing until in the new year bliss xx
Your day sounds horrendous. Glad you've got a good GP. Mine are both good. My ultrasound was clear, have had my CT and got cystoscopy on 19th so can't see me getting the diagnosis before Xmas. It's going to take 4 to 5 weeks for results of CT to get to Consultant. I'm assuming that I haven't got cancer with the ultrasound being clear.
On another note I've just got home from taking my brother to casualty at 23.00 and it's now 6.20. luckily nothing too serious in the end, raised blood sugar and not a heart attack after all.
Keeping my 🤞that your GP can shed some light on treatment.
Thank you stravinsky1 - The day was "horrendous" you are right, A good GP matters. What happened with me was I had a flexy cystoscopy in his office and that showed a tumour, he said it was early - I can't remember an ultrasound ,but CT Scans I did have. - I hope you don't have it - If you had cystoscopy on 19th November I think Xmas is out also. .
I had a lot of scares with my heart - Never had raised blood sugar, they thought I had heart attack and was just Angina. My worst scare was ambulance bypasses A&E and went direct to CC - What nice people - I was having a VT attack and I passed out in bed, I got sorted really good in CC.
Dont be fed up Ern, sounds like you had an exhausting day yesterday, things always look better in the morning. You were probably shocked to hear that the cancer could spread but please dont dwell on this, it isnt a given. Hope you feel more in the mood for painting and look forward to this one x
Thank you Izb1 - Yes I was down yesterday - it took a year to get diagnosed and then said I was lucky I had Superficial none muscle invasive and then they tested me for lung cancer and stopped treatment. But I ham hoping my GP will say can spread but that does not mean it will. I will be painting today, I did not yesterday as I did not want to runi what I had done. x
Aww Ern I can't believe how complex and as you say contradictory your situation is. I have a complicated life but how you are expected to cope with all the mixed messages you get and withstand all the different treatments I don't know. I will look forward to the painting on Sunday, if you feel up to sending it. Take care xxx
Thank you Nula2 - Words could not properly describe the mixed messages, for a year they said I had a Urinary infection - Then I got diagnosed, and was told just superficial. I will try and find out Tuesday,
Yea I will be ok to post the painting Sunday, after WED Sunday seems best day on a Monday morning, xx
I hope your GP can help you make sense of all this and rattle any chains that need rattling. Don’t get too down about they often change their minds as you well know.
Thank you Mooka - They do change their minds you are spot on. I was told I had Superficial Cancer then they said I had Cancer in Situ and that was high grade, now I don't know what they mean, so that's why I am lucky I have appointment with GP.
So sorry you are being messed about like this. You have quite enough to cope with. And a horrible car park on top of that. My hospital has closed the top floor of its 2 story car park, because it was made with crumbling concrete. That really improves the parking situation. We get a taxi or the bus. (Cheaper than smashing into someone else's car.) I hope your doctor will have something sensible to say about your situation. xxx
Thank you - We don't have a multi story car park, we have a tiny car park at the south entrance and a better one at main North entrance. We need a multi story. - I have seen nothing like yesterday ; I hope so, ever since I was diagnosed, I have been told different thangs, Happens again, I will have to get a taxi - I don't know if I will be fined or not. The yellow lines where also full,. I am sure my GP will put me right, like I said before, we are lucky to have her. xx
Hello Ern. Somehow I managed to avoid a parking fine when I went for chemotherapy!! I gave up and stuck a note on my windscreen just saying "been driving round for an hour - nowhere to park. Check the chemo centre if you want me to move it". I wasn't in the way of anyone and got back to my car 7 hours later where there was another note written by the parking guy saying "no worries and good luck".
WOW - Well done, we have Park wise , hearts of solid stone. We was not in the way of anyone, Park wise film on car park , maybe not geared up for double yellows.
No - Preston hospital is also nightmare to park at - They do i think have attendants that guide people into any spaces that are left. The hospital is fine but they do need more parking.
I’m sorry to hear you’re so down Ern, although totally understandable in the circumstances. The blooming nightmare of hospital parking on top of everything else is just the last straw sometimes, isn’t it. I know you get on well with your GP and so I hope your appointment with her is helpful and brings some clarity to a complicated situation. Thinking of you x
Thank you Threecats - I was fine going to hospital after news last week - It all seemed very unclear. That has been the case at times since 2021 - I remember a visit far worse that this. I will ask my GP what I was told actually means. she is a good one .
I don't understand "her opinion that RT would not help". As my Consultant said after diagnosing my BC as G3 'non-invasive', "that's not a happy cancer, as it has variation, so it's better off out". I agreed, so October 17th saw me cancer-free, & no evidence of metastasis in my lymph nodes or scans of the liver & kidneys. The stoma takes some getting used to, & the recovery week post-op wasn't much fun, but to be free of the symptoms & the need for ongoing cystoscopies is is worth it! 👍
About a year ago a Cystostomy was mentioned. the problem is my other health conditions, being IHD/AF/Former VF and Valve problems. Stage 3 CKD and COPD . and lung scarring.
There seems to be a danger I would not pull through a Cystectomy.
My Cancer Nurse told me I was now Low Grade - IF that is so, it should take the sting out of G2 none muscle invasive in situ.
So looking at other options. My Cancer nurse said RT.Chemo would not work "Would Not" work.
Yet it is in places sited as not as effective as bladder removal but much safe.
I don't think it can help the CIS, but I am sure it could help with any secondery.
Many are baffled my cancer has gone from high grade to low grade - Very rare yet I am told it had.
Problem is with my age and conditions, would I survive a cystectomy??
Hi Ern I do sympathise and emphasis with you, we have to absorb, so much information, instructions, advice, on what can be immensely complex, and frightening medical conditions.
Many of us are advancing in age, and driving to, or getting someone to drive you to appointments and treatments has always been problematic. Added to that is the persistent lack of parking, for staff as well as patients.
I believe in some countries they have a very efficient system whereby, staff, and those with certain serious conditions, as well as the very elderly, are prioritised, with the relevant parking permits in place.
It's not 'Rocket Science' and many of us just take it on the chin, as we are wary of 'Rocking the Boat'.
A Shakespeare' so eloquently said, 'Don't let B.....s get you down'😬😎
I wish you all the best with your treatments, and travelling. Ron
Thank you Ron - I think of all the times I have been in hospital for life threatening VT for example. It's a no brainer for me, I would pick that. hard to get me down - but these people have come close.
Illegitimi non carborundum - Maybe fake Latin, but i won't .
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