As things stand I have finished my BCG treatment which it seems has failed.
I visited my GP and she asked how I was - gave me a script for to wet my mouth and some Folic Acid.
I mentioned so pain I have in ribs - not very bad but there,. She prodded my ribs and yes there was some (not bad pain).
She said if I wish she will refer me to Nuclear medicine fora nuclear scan - i think the choice as she did not want to push me at the moment. Told me to ring in a couple of days.
So she was thinking a possible metastases from my bladder to bone.
The Nuclear Medicine is at Preston - The scan takes up a hour then you can go home - unless - there are any hot spots, then you can add a few hours extra onto that.
It's down to me to decide. - I have a cysosopy in about 4 weeks - This scan could be a pain now, but this could save me a lot of bother later with lesser scan after scan.
I am in middle of a painting which I hope I can post later in week- But in meantime some while ago I did a 20 minute Halloween painting which I will post now.
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Ern007
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Thank you Carole - I think I will get it checked out, not sure my GP was 100% as she was hesitant - She also likes to be thorough - I probably will put a note in accepting and reminding we are away for four days end of the month. Anne seems very unsure.
The picture I did a while ago, to hang in the hall at Halloween - also did spooks in a graveyard, that's a spooky but funny pic. I did a scarecrow in a cornfield. i hated that picture, don't care for scarecrows and dolls at all. Hope you are keeping well Carole and hubby and hope you get you RT on time.
I am sure I will, going to have a little drink tonight and watch a film - I probably will go for it,it just came out of the blue.
Yea Anne deserves the Blackpool break last year I booked IOM and Dr said no, mainland. I am staying in a hotel 7 miles to the North of Blackpool, we catch a tram to get in resort, lot goes on in hotel, I like evening entertainment, even when we used to go abroad. We had our anniversary in July, not that far from 50.
Hope you have a good 31st Carole and good, keep staying positive.xx
Enjoy your film and Blackpool break. We like evening entertainment when we go away too and enjoy the Warner hotels.
Hope you enjoyed your Anniversary in July. We celebrate 50 years of marriage in November but not sure what to do to celebrate yet. I’m sure we will think of something.
Anne Birthday 14 November. 50 years for us next July. Maybe a weekend in a Warner to celebrate. - Sure it will be a special day 50 yeas of marriage. 😀 x
I’m sorry to hear that your latest BCG treatment appears to have failed, that must be extremely disappointing for you. The scan the GP has offered does sound like a good idea and, as you say, will hopefully reduce the need for more scans in the future. You have a good and thorough GP there by the sound of it.
Love the picture! I do admire your bold use of colour.
Thank you TC - BCG has not officially failed but I got the nod. So really is has. The scan offer came out of the blue - I was a bit taken back but could cut future diagnostics with more risky procedures,What puzzled me was the choice. She is a good GP no stone un-turned.
That picture is a simple one and I like it -I have it as profile pic, it was for Halloween and I did a graveyard scene with spooks. Good to hang in hall at Halloween. I wish you well and you cat Portrait was brilliant - I posting under a can that died, he was a good solid cat - I may, just may try and paint him. take Care x
What a lovely photo of a beautiful cat, Ern! You’ve caught him in such a great pose! I’d love to see what you do if you do decide to paint his portrait. If you eventually decide you don’t want to, though, I’d love to have a go myself, if you don’t mind, of course!
Thank you for your good wishes and your kind comments on my painting. I can quite understand why you were rather taken aback by the scan suggestion, I would have been, too. I hope you make a choice that’s right for you x
Thanks for that Ern, I will😊 Won’t be for a while though as I’ve been having some problems with my heart meds and whilst that’s been going on, I have taken my eye off the ball when it comes to keeping my mum’s garden, and mine come to that, in order! They both need a serious sorting out 😀
Look after yourself and I’m glad you’ve decided to go ahead with that scan x
Heard meds, I have a nasty one "Amiodarone" - I collapsed in hospital with VT and had to be brought round - Amiodarone was the only suitable option for me having COPD - It helped a lot but destroyed my thyroid - it's toxic but needed. My other heart meds are OK but can drive blood pressure down..
No worries over cat - when ever you feel like it or able. - Garden until a month ago I was on top of my part but, I can't get going at the moment.
Yea the scan - it's a drive to Preston, not my local hospital, takes up to an hour, then I think you can go but any hot spots on scan and you can be there hours - Has to be done though and there will be no need for hospital to make that check.
I’m sorry to hear about your VT experience, that must have been very scary both for you and your family. Yes, Amioderone is a nasty drug but sometimes necessary, as you say. Blood pressure going too low has been my problem with the meds that are needed to keep my heart rate in check.
I hope your scan can take place soon and fingers crossed that there are no hot spots x
VT came at first as a discomfort in my Chest - Anne dialed 999 and the ambulance came - Sirens blurring and did not go into A&E straight to Coronary care unit. I saw the screen and new something was wrong. They game me a bottle but never used it I was not there. All I can remember was doctors nurses round me "are you ok now" - Then I was scared I realized what had happened, As ill as I was at 6 am she said you are ill and they put a moniter round my neck, sends signals to CC - A man was admitted worse than me, a huge heart attack.
Come the morning I was given Amioderone loading dose 200mg 3 times a day for I think 5 days, then 200mg after as normal dose.
BP does go down as does HR - Advice drink water, it's helps raise BP - mine has dropped as low as 73/44 even in hospital, I was given a glass of water. Take care standing TC - You can get a sudden drop and you can fall, "postural hypertension"
Thanks TC - I hope no hot spots, different than a CT, they tell you and keep you a few hours. Take care x
Blimey Ern! You don’t do things by halves do you! Thank goodness Anne rang for an ambulance when she did!
Thank you for the water tip, it certainly does help. As you say, standing up too quickly has been a bit of an issue in the past, better now the dose of the latest drug, Verapamil, has been adjusted. Onwards and upwards as they say…. well, onwards anyway 😀
All the best to you. Looking forward to seeing your next art work x
Yea was nasty - I ended up hallucinating but I did not know for months or even a year or so. A nurse tried to take blood and left a load of bruises - A sister came and I said you will never get in my vain - She did. i was telling my GP when I lived in town - She said describe what the sister was wearing, which I did - She smiled and said i had described a sister from the 1960s - So I was hallucinating.
I got the water tips from the hospital having a BP taken for thyroid, alarms sounded and it was low, I got a glass of water. Seemed to work.
I used to be fine on Verapamil it was a cap I thing 240mg from memory - did not stop VT though that's how I ended up on Amioderone.... Thank you I will be posting an old art work candles for hope. i got my Nuke scan date is tomorrow.
Sorry to hear that the BCG didn't work. I like the sound of your GP- a cut above, as they say. Hope you both have a lovely time in Blackpool with nice sunny weather. Your bird looks far too nice to me to be a spooky Halloween monster.
She is good and she cares . I had another good GP when I lived in the town, was a man but when I went with my breathing he would stay on to put me on neb - When he retired it was a nightmare until we came to village. The bird may look nice but, what affect has the moon at Hallows Eve had on the bird? I hope weather is decent when in Blackpool - Lots of places to go in but, I love the sun.
I had no faith in the BCG - I have had the last three would be a miracle if they have done any good.
Gorgeous picture it's a pleasure to see if I was you take any treatment or scans that offered enjoy blackpool I love blackpool haven't been for few years but always enjoyed going I feel jealous now ha ha have a nice time
Thank you I have today accepted the scan, it could well find something that could be treated, I have not been to Blackpool for a few years but can't not go abroad, Blackpool has lots going on, I don't like quiet places.
I have never being a broad I' have always being happy staying here over the years being great Yarmouth places like that but blackpool was 9 out 10 was were we went we enjoyed it I can enjoy just sitting and watching all the family with young kids go by thinking that was me years ago but there's plenty things there my moto is make the most off everything and enjoy
Sorry to hear treatment does not seem to have been as successful as you hoped but maybe the formal results will be a little more positive than 'the nod'.
I didn't know a thing about nuclear medicine scans until B. I. L. went for it a few months ago and now I'm having it done tomorrow as they're still looking for a cause of my falls. Is it the new kid on the block that's been recently approved or has it been around for years but I have only just become aware of it?
Whatever, I am glad you have a proactive GP and hope that any results either alleviate your anxiety or point the way towards realistic options for treatment.
Meanwhile, I am off to my art group this morning. I don't know about you, but when I get the paint brushes out I become so absorbed in what I'm doing that the world stops for a couple of hours.
Thank you - I knew about nuclear medicine but I did not know anything about it, I have had a PET Scan and that has a radioactive tracer. I hope your scan goes well.
I have painted for years - I had a break because my youngest daughter Victoria who came late in our life was due to make an appearance. I was not making that much money and with a baby on the way, I contracted out to a plant nursery - Hours so long no time to paint. I kinda lost it. after a few years I started again with acrylics not watercolor I had ones previously.
Yes I get lost painting last night for example I was 6 hours on the go practicing a galaxy painting on a used small canvas. Hope you enjoyed your art group x
So sorry to hear your BCG treatment failed Ern and am sure it must have been a shock to hear your doctor suggest a nuclear scan but maybe better in the long run. You have a great gp and it sounds like she is looking after you. Your holiday break will do you both the world of good fingers crossed for the weather. I do like you use of colour on all your paintings it makes them stand out x
Thank you. I never had faith in the BCG treatment, would rather have had chemo. Yes was a bit of a shock, my GP has a habit of doing that. Looking forward to Blackpool, not driving my daughter offered to run us both ways, I never set out to use a lot of color but that's normally how my painting turn out x
Good morning Ern007. So sorry to hear your treatment has failed and your still dealing with the ongoing issues. Hope you enjoy your break in Blackpool and take care both. Thoughts are with you both. Great painting again. Brian
Love the picture, Ern. So sorry to hear about your ongoing medical problems. Wishing you all the best, whatever you decide. Your celebration in Blackpool will certainly help.
Sorry to hear your latest news Ern with more decisions to make. I hope that you enjoy your break in Blackpool and will be able to switch off and relax for a while. xx
Sorry to hear the treatment didn't work. Your art work is brilliant. Bet it relaxes you and takes you away sometimes. In the zone. I will keep my fingers crossed for you for future treatment 😉🤞
Thank you p Yes i worry about nothing when I am painting, really does take me somewhere else. I will update when when I know what new treatment will be, hoping it will be RT and Chemo. I have faith in that.
So many decisions for you to make. I’d accept the scan you can always change your mind nearer the time. Keep up the painting and have a lovely break away.
Sorry you didn’t get the results you were hoping for , hopefully the treatment going forward will be good 😊 I love that painting , I love how simple it is but still manages to convey the right atmosphere. I haven’t taken up my paintbrushes for many many years but your paintings are inspiring me to dig them out
Thank you - I am in hope I get RT and Chemo, I have more faith in that. The paining is simple, I did spooks in a graveyard also. I did them to hang on hall wall at Halloween . I painted a cityscape/sunset and a country road, I have them hanging in our bedroom at my side, simple but cheerful
My husband also had Bladder Cancer for 12 years he had numerous scans cystoscopies and Turbts He also had cancer in the ureter for which he was also treated with the same scans, treatments etc. He had two courses of Chemotherapy each lasting for six weeks. Please do not worry so much Bladder cancer is so different to many other types of Cancer The treatment can be ongoing for years about 8-10 without any occurrences before treatment is stopped. Every time you get any occurrence the clock goes back again. My husbands went back a number of times and yet still stayed in the lining of the Bladder. On the down size is the fact that treatment really does not stop because of the constant checking that the cells have not gone into the muscle or beyond . Even then there are choices that can be made between yourself and Consultant before removal of your Bladder. My husband always said that he could accept any treatment offered as long as it did not include stents which he hated with a passion. Wishing you well Ern007.
Thank you clematis5932. I first had the flexy Cystoscopy that showed a tumor - That was remaoved via TURBT.
Diagnosis was Superficial None Muscle Invasive Bladder Cancer. I was happy with that but, came - It was now "Carcinoma in Situ" which meant it was in bladder but, after biopsies it was shown to be high grade For this I was offered A Radical Cystoscopyn other words bladder/prostate and lymph node removal - I said no - I was but on BCG (Three Courses) seems that has failed.
The cancer is aggressive and it seems it has moved to the lining (not muscle) - I am having a further Cystoscopy in about three weeks with 4 biopsies.,,
I understand your post as it is encouraging but two problems -
1st - Being I have some rib pain. I am having a nuclear scan to see if there has been a spread to the bones. I did have a 6mm node also on lung, seems no worries about that.
I have had Bladder symptoms since October 2021. I was diagnosed July 2022.
So can I ask please .
Has your husband got CIS "Cancer in Situ which is high grade,
any symptoms of bone pain.However slight.
I doubt I am fit enough for a Bladder Removal, takes several hours and it's not just the bladder. So I will ask for Radical Radiotherapy which is RT combined with Chemo.
How was your husbands Chemotherapy delivered, via injection or direct into bladder like BCG?
Thank you very much for your post, if you see my answer, I hope you can answer the questions.
I wish your husband and you well - he seems to have the right attitude,
My husbands Chemo was delivered direct into his bladder we used to go every Friday to the small clinic attached to the ward six treatments were given. After about six weeks a further Turbt was done in my husbands case another small tumor was found which was removed and then another six weeks of chemo. Later tumor found in the ureter all of that could not be removed . He was given the option of having his Bladder removed given his age he decided to wait and see. The ureter did give him some problems over the years mainly his Kidneys reacting to the strain. About two years before I lost him he had bag fitted to collect urine as his kidneys were failing. I must point out that after being diagnosed with Bladder Cancer he developed another 4 cancers NONE of them being connected in any way. Skin Cancer, Blood Cancer, Lung Cancer together with Copd. CIS is always classed as high risk however small it is. A few years back many patients had BCG over a long period of time between 14-20 doses there then was a terrible shortage of it so doses were reduced. I think you may know more than me that it was found that smaller doses were giving the same good results. I should add that although Bladder Cancer was the first cancer he had, it was not the cause of his death.
Thank you. They rang me this morning and am booked in for the 'scan; tomorrow 11-30 - now that was fast. Injection of tracer wait at least two hours, have scan 15 mins then home.
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Update on my treatment 
