Calling all triple negative breast cancer patients in the UK
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Hi Ladies
hope u are doing well? Just dropping in to say hi and send my love. Still working and very busy. Summer is about to start here and I’ve been on the road quite a bit. About to start some trials with the Nation Centre for Immunisation Research & Surveillance for Japanese Encephalitis Vaccine. Been try to catch up on the thread but this new website is really hard to follow.
Much Love to u all
cheers
Kath
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Hi Guys
Ive tried to upload a post a few times on this new site and it’s really difficult. Thy don’t seem to appear. How are u all
cheers
Kath
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Hello Gill,
I decided this afternoon to have a look at our thread and was surprised to find that you had posted on October 15th and was even more surprised to find that Kath had found her way back and had posted on October 18th and 19th. I hope you are still looking on the thread and that you will find Kath's posts. It is so obvious that our members are finding this forum so difficult to cope with.
I was even more surprised to find that I had a PM from Teka. She goes way back on the thread and always had something interesting to say. She wanted to let me know that she was still well after 12 years since diagnosis.
I know a few others have been posting albeit with difficulty.
I do hope Mary is still viewing and that we shall hear from her. I shall try to contact her by email.
It looks as though there may be life in the thread yet, despite all the problems with the forum.
Let us try to catch up. Everything is so awful in the UK and we do need that General Election. Our country is falling to bits and the world is so dangerous.
Love to you and Michael.
Sylvia xxxx
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Hello Kath,
It was so nice to find your posts on the thread. Mary, Gill and I had been mentioning you on the thread and hoping that we sould hear from you. Everything has been upsidedown on the thread since all the unnecessary "improvements"! We had given up on any future for the thread.
I was glad to hear that everything is going so well with your work. It must be very interesting.
Hear in the UK everything is a mess and we can hardly recognise our country.
Raymond and I recently had our Covid vaccination for this season. We went to our GP surgery where they were doing the two vaccinations at the same time, flu and Covid. Raymond had the two but I decided to have just the Covid and will have the flu one perhaps later. I felt quite unwell for a few days after the Covid vaccination. I have not felt like that before. We were not given any information about the vaccination or any card to prove that we have had it. We always had cards before.. I investigated for myself and found that it was Comirnaty Omicron XBBL.5. That does not mean much to me! We had it done on October 11th.
Last night we watched a news item about all the excess deaths that continue to occur and especially in middle aged people. It seems that most of the deaths are occuring after Covid illness and due to heart problems, especially heart failure. It is all vey worrying.
Keep posting.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I have been looking through some of the posts and trying to see whether we can reconnect and get thread going again. It is so important to keep in touch with what is going on and especially for us with triple negative breast cancer.
I wanted to say hello again to Mary, Gill, Kath, Paula (pkville), adagio (Deltag), a long time member from Canada, Sue and Claire0606. Claire how are you doing? Last time you posted you did not have good news. I do hope all is well. Hello again Teka, I am going to answer your PM.
It would be good to hear from everyone and to get updates on how you are doing.
Love and best wishes.
Sylvia xxxx
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Hello everyone again,
As you know I have commented several times about the fact that some threads have had the number of their views truncated drastically for no apparent reason. I have asked for this to be corrected but so far no success. If you have a thread of which you are particularly fond then have a look at it. If the posts outnumber the views then something is seriously wrong. I spotted it immediately, so I know that the views on our thread should be about 132,520. The posts are now 16,565. Historically there have been about 8 views to every post.
I feel strongly that the numbers should be credited as they are because it reflects the care and devotion that each person is showing to the thread and the forum.
This arithmetic has got to be sorted out. You cannot have more posts than views because in order to post you must view. It is as simple as "Cogito ergo sum", I think therefore I am, as Descartes said in French, Je pense, donc, je suis. Simples!
Best wishes to everyone.
Love.
Sylvia xxxx
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Hello Kath,
It's so good to hear from you again. I guessed you'd been busy with work.
The new site is an absolute nightmare and it isn't getting any better. I'm guessing there must have been a good reason for scrapping the old, user friendly site.
The weather here is much cooler and much wetter, nottoo bad though. Enjoy your Summer, and your work on the new vaccine trials.
Love,
Gill xxx
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Hello Sylvia,
Teka was well before my time on here, but it's always good to know that's someone is a long way from the original diagnosis and living life as normal. As I would be doing, had the side effects of Chemotherapy hadn't been so bad. I'm very tired and need to rest during the day, I was always so active before. That's probably why I enjoyed the cruise so much, I could go for a lie down whenever I wanted during the day, while Michael went off exploring the ship.
We urgently need a General Election, but it looks like we're going to have yet another new Prime Minister instead. Braverman is a Tufton Street favourite because she so far right. As you say, the world's looking very dangerous at the moment and we Need someone competent and steady at the helm.
I have my final annual mammogram appointment tomorrow. I have to get across Norfolk in rush hour, find a parking space and at my appointment by 8.30. Some roads are flooded and have diversions in place. No news about my reconstruction yet, they assured me that I would be offered one and I'm going to hold them to it. Since diagnosis to now everything has been such a battle. The hospital is all but broken.
Take care Sylvia, love to Raymond.
Much love,
Gill xxx
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Hello everyone,
I just wanted to let you know that I did hear from Mary via email. She is busy at the moment but will be posting. I am sure we all look forward to that.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your post. Raymond and I have to go to the hospital tomorrow for his pacemaker check. I will post later tomorrow.
Love
Sylvia xxxx
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Hello Gill,
I finally found a minute to answer your post. Yesterday the time seemed taken up by a visit to the RD&E in Exeter for Raymond to have his pacemaker checked. It was all very exhausting. It is so busy and more like an airport as you go in at the front entrance. The young woman doing the test was very helpful. She even did another ECG which had not been scheduled. At least the pacemaker was working alright.
How did everything go with your mammogram?
I think we are all getting very tired with the state of our country. I do worry about how everything is going to end because our politicians seem clueless. I do think a General Election should be called now, because we have a Prime Minister who was not elected. However I do not think the alternative will be any better. The powers that be seem to want to do anything but concentrate on our real problems. They are too fond of jetting off all around the world, full of their own importance.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I wanted to let you know that I had a very nice PM from the Moderators after they had read one of my posts to Gill. They asked me how to improve the forum. This is what I replied. If you have any ideas of your own why not let the Moderators know? I think we all want our homely forum back.
My landline telephone and my new washer-drier proves to me that technology is going too far. Most of what I have on this new telephone and washer-drier is superflous to my everyday needs. Would you believe that I have a telephone with an answering machine that will beep that there is a message until I listen to it. Consequently if I have gone away for a few weeks it will keep beeping until I get back. There is no way of turning off the beep, so if I go out I have to turn off the answerphone which rather defeats its purpose!
Best wishes to all.
Sylvia xxxx
"Hello Mods,
Thank you for your PM. It is very difficult to know what to say about making the forum easier for people to navigate. I can say that I did love the forum as it was originally when it felt like a second home and community. I think now it seems overwhelmed with tech language and form and it has robbed the forum of its intimacy. My husband, Raymond, is a retired electronics design engineer and he firmly believes that "if it ain't broke don't fix it!". There are too many instructions and when you just want to post something there are too many things. For example as I write this I see Add a message, Send a message, paragraph marker, and four little designs, smiley, add picture, insert media, upload file and to find out what they mean you have to hover over them.
I hope this helps and I do hope those lost in the technical maze will find a way out. I have lost quite a few friends because of these changes, not to mention having the number of views truncated beyond belief. There are more posts than views, which is impossible.
Very best wishes and good luck.
Sylvia"
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Hello Sylvia,
Pleased that Raymond's pacemaker is working as it should and that the hospital seemed busy - as it ought to be. I was first in for my mammogram and it was very quick. I'm expecting my results via the breast surgeon sometime next week. The hospital wasn't busy at all. The breast clinic waiting room was almost empty. Staff shortages are very evident here.
The dreadful news from Gaza has knocked the state of the country and the NHS out of the headlines for the foreseeable future. I think the Government will cling on to power until the very last minute.
Did you have a covid booster or the seasonal flu vaccination? I'm having my flu jab next week. Still wearing a mask in crowded places, but I'm about the only one.
I'm glad that the moderators have been in touch. I can only emphasise your own view that simple is better. The original Web design was so easy and user-friendly.
Hope that Mary has the time to post again, I miss her news.
Take care Sylvia.
Love,
Gill xxx
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Hello Gill,
Thank you for your post. I agree with everything you say.
I had the Covid vaccine, which did make me unwell for a few days. I shall now try for a flu vaccination, if there are any left!
I am still not optimistic about the future of our thread. I picked out four threads as my favourites and activated all four, so that they were on the first and second pages of the Active Topics. Of course, our own thread was there and you have posted. I also activated Calling all TNs but so far nothing this time. These two threads were once very active and we interchanged posts. Tiatan was my inspiration. The other two threads that I posted on regularly were the thread High Calcium in the forum Not diagnosed with metastases but concerned and the one begun by Sam52 entitled Parathyroid disease and breast cancer. Sam52 and I both went through surgery for hyperparathyroidism and were following information about hyperparathryoidism being connected to get breast cancer. Blood testing of PTH should be routine in blood tests but it is not. High blood calcium can be a sign of breast cancer that has spread but it can be due with problems with hyperparathyroidism. They are well worth looking at. There has not been much activity, alas.
Take care. Keep well, keep sane!
Love.
Sylvia
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Hello Sylvia,
I was interested to read about you activating other threads, I'm afraid that I've lost touch with the other threads I used to have a look at now and again. It would be interesting to know by how much the number of contributions has fallen. I'm afraid that we may not see numbers rise again in the foreseeable future.
My covid vaccination made me unwell for a few days this time. I was given a souped up version of Pfizer. My flu jab's this Thursday at the local pharmacy. Not keen on all these injections, but if we do become seriously ill with either covid or flu, there seems little chance of getting hospital treatment. Two hospitals announced they were in a critical state this morning - no beds andambulances with dangerously sick patients were queued up outside. Some hospitals are looking more like you'd expect to find in a war zone, not a supposedly civilised country.
I don't know if you've been watching the covid inquiry? It's absolutely sickening. Johnson was quite happy to let older people die in order to save money. It seems that the behaviour inside number 10 was even worse than we imagined.
I see that Exmouth beach, along with other beaches in the area, has been contaminated by sewage, so if you go swimming, remember to keep your mouth closed. That was the advice of a Tory MP earlier this year!
Take care of yourself and Raymond.
Love, Gill xxx
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Hello Gill,
I have just seen your post of October 31st. Thank you for that.
I think we have to accept that the thread and for us the forum is never going to work again. Even Mary has not come back and it could be that she has had trouble getting back. Let us just give up. I looked at the thread today, saw your post and just looking at the format for answering a post just lacks all warmth and character. The words Leave a Comment are just ridiculous. That is not how our thread was working.
I was sorry to read that you were unwell after your Covid vaccination. I was interested to know that you were given Pfizer. Raymond and I had Omicron Astrazeneca. He was alright but I felt quite unwell for a couple of weeks, not at all myself.
I have not had the flu injection and do not feel inclined to have it. Raymond has had his.
As for the state of this country and indeed the world I do not know what to say. Everything is so awful.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hi Sylvia and Gill
Today I'm sitting in Allergy Docs office, for an annual checkup. Feeling miserable, really. Very stuffy in head, and I'm afraid I reinjured my surgery shoulder, very achy in shoulders and back. I am Worried, I don't want to be told I need another surgery
Is there any good news, I wonder. It's hard to find.
I dont want another Covid shot, but I am Planning on getting a Flu shot. Sometime.
I'll try to get back sooner, I hear the Doc rustling in my papers!
Talk soon, love, Mary
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Hi Sylvia and Gill
My shoulder is some better, I'm thankful for that. We finally had a little rain so it has helped my allergies a lot. We are so very dry here
!
I'm always interested in your stories of Healthcare access, it seems the way things are now, companies are cutting quality and charging more, I don't see it getting better really.
I hope Raymond and Michael are doing well, Gill, did you ever go on your cruise?
I'm going to head for home now
I'll talk to you soon, and happy UK Thanksgiving!
Love Mary
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Hello Mary,
I saw that you had posted. I was sorry to read that you are having so many problems with your health. I do hope it will get sorted out.
I had decided that it was best to give up the thread. It is just not the same anymore and i do not think it will ever go back to how it used to be. It is such a shame. I think technology is spoiling everything.
If you want, please email me at my private email.
Wishing you allthe very best.
Happy Thanksgiving day!
Love
Sylvia
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Hi Sylvia,
Hope you remember me.
Hanieh from Iran.
Just came back to say hello and announce that I have been cancer free for 6 years since my second diagnosis.
I’m not surviving but thriving.
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Wow Hanieh! I'm Mary, I remember you, Sylvia definitely does! The last we heard you were moving to Turkey with the Plan of moving to Canada, did that happen?
I am well, Sylvia is too, I'm sure she will chime in soon.
Merry Christmas Hanieh, very glad to hear from you.
Love, Mary
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Hello Hanieh,
I have just received a message from Mary to tell me that she had gone on the thread and found your post. I was amazed and so happy to know that you are well and thriving and are now six years from your secong diagnosis of breast cancer. Congratulations and well done! We have looked and looked for you over the years and been very concerned.
I was surprised that you have been able to find your way back through bc.org. The whole forum was changed about a year ago and memberss did not like it and it did not feel right any more. There were so many problems and everything seemed like a technological maze. It was not homely any more.
Our thread, which had been so active and which I had dedicated myself to, seemed taken over by bureaucracy. Mary, Gill, adagio, Kath and so on more or less gave up.
I felt insulted that all our hard work had gone to waste.
Talk more later.
Best wishes.
Sylvia xxxx
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Hello Hanieh, again,
Please keep in touch and let us know about your life during the past years since you were last in touch.
I was most annoyed about the thread and the fact that the views had been changed and misrepresented. They should be about 149,247 and this represented 13 years of people supporting the thread and exchanging all sorts of ideas on triple negative breast cancer. I did ask the moderators to remedy this but it has never happened. It seems like technology can mess up at will but cannot be bothered to change its mistakes.
Let us hope that the thread may revive but I feel the big groups that made the thread what it was may have got fed up with it all.
I think people are fed up with many things in the world! I know that our own NHS in the UK is in deep trouble.
Take great care of yourself.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your email and for giving me that good news.
I do hope all is well with you and that you will have a good Christmas.
I wish you good health for the New Year.
There is so much bad news in the world that I shall be glad to see the back of 2023.
Everything is much the same here. The rich get richer and the poor get poorer! Our country needs to modernise.
I have forwarded your email to me to Gill.
If Hanieh can reappear, let us hope we hear from Marias again.
Love and best wishes.
Sylvia xxxx
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Hello my dear friends,
Dear Sylvia and Mary,
Upon coming back, I was shocked by the changes and could orient myself with difficulty.
I spent some months in Turkey and taught English there. I had some amazing students but because of some reasons I had to go back home. After that, in my previous job,I got a lot of promotions and was given some high responsibilities such as being responsible for online exams, being the head of International Exams, and being in charge of compiling all online materials during pandemic for which I could only sleep 3 or 4 hours a day. They were all great experiences for me and during my last 2 years, I was promoted to being responsible for Teachers’ recruitment, Evaluation and Development at Iran language Institute.
During pandemic, I got another big chance which was participating in online Cambridge CELTA course with some great instructors from Cambridge. They were some wonderful professionals who revolutionized my methods of teaching drastically. It was a great honour for me to be their student.
This CELTA course was a turning point in my life which encouraged me to start up my own virtual academy. In Iran Language Institute, I could not employ what I had learnt due to strict teaching methodologies.
It has been a year and a half since I became a freelancer and I think so far I can consider myself a success.
Unfortunately, due to the unrests in Iran and during the time we, Iranien women, were fighting hard for our basic rights, I got admissions from 4 universities in Canada. Yet, my visa application was refused as the government of Canada thought I may seek refugee. This is something that is the farthest to my mind.
I deeply wished to continue my studies and live a more productive life as I had applied even without my family.
As I had admissions from four universities, I applied for study permit for all of them and was rejected. My depression was so deep that for days I was in tears. I had applied to continue my studies in Education as CELTA was an incredible experience for me. But the Canadian officers asserted that I had already achieved quite enough in my country in this field and I did not need further studies and because of this they were not sure I would leave their country after graduation.
I think not being born in a third world country is the blessing that you should always be thankful for.
To make the long story short, this struggle to continue my studies in an international environment to be in touch with the latest methods have never been easier than my struggle with cancer.
Nevertheless, I have not still given up.
I am still working hard toward reaching this goal and I hope some day I come to you with some good news.
Love you and wish you all the best in the coming new year.
By the way, I have started learning French and now have finished A2 level.😊
Hanieh
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Hello Hanieh,
It was very interesting to read what you have been doing during your absence from the thread.
It sounds as though you enjoyed teaching English in Turkey and were sorry to leave your job and your students.
It also sounds as though your work back home was very time consuming, but interesting. I cannot really imagine what it must be like teaching a language on-line. I was a language teacher and have taught both French and English as a second language. Oral practice is so very important. I taught English in Morocco for three years for the French Ministry of Education. I taught mainly boys aged 14 to 18 and found they were very quick to learn and very eager. I had only three girls. I have also taught French as a second language to students aged 12 to 18.
I was interested to know that you have become a freelancer. I am sure you will continue to be successful.
I was also very interested in what you said about your experience with the Canadian Government. I think all governments in the Western world are worried about over-demand, especially in the universities and also with too many people wanting to settle in the West. I know that here in the UK the government is increasing the amount of money that a person must be earning in order to gain admittance in this country. The government is also getting more strict about the number of dependents that they can bring with them. The UK is a small island in a large world and we are overpopulated.
Canada is very different and an enormous country, but even so, the cities are overcrowded. Raymond and I spent seventeen years there and it was quite a contrast coming back home. You could only get into Canada if you had been offered a job that a Canadian could not do.
I do hope you will manage to fulfil your dreams and achieve your goals.
I was interested to know that you have started learning French. You say that you have now finished A2 level. What level of French do you know at that level? How are you learning it?
Thank you for taking the time and trouble to tell us all this. Thank you for sending a lovely Christmas card.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia and Hanieh
Hanieh, I read your account of events and I'm amazed at everything you have accomplished despite adversity. I'm sure your Iranian life is hard even without trying, as you have, to achieve so much.
I'm sorry too about Canada and their refusals. It seems these days that going at things the "right" way doesn't work, but storming through borders the "wrong" way does! Maybe it's always been so. Lately I've been watching "The Chosen", about Jesus and his apostles life together in their early days. He told them their lives would not be easy, but the 12 followed anyway. It's a great series if you can find it, I did find it by accident.
Merry Christmas, Hanieh! You are such a strong determined woman I'm sure you will have a successful New Year too!
Sylvia and Raymond, as always I wish you the best of health and happiness in the New Year!
Who was it that said "The best a man can wish for is to live in uneventful times."
Peace! Love Mary
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Dear Sylvia and Mary,
Merry Christmas.
I wish you and all an amazing new year full of health, wealth and success.
Now, it’s about 3 a.m. and I cannot sleep at all as my mind is so engaged with all the changes that are going to happen in my life soon.
Sylvia, thanks a lot for all your kindness and encouragement. As you were wondering about online teaching, I should tell you that at first it was something very weird for me as the whole processes of language learning and language teaching require in person communications. But, as during pandemic we had no choice but to continue our classes, I started to think of how this online system can work and the results were amazing. I lead a team of teachers to develop lots of slides, podcasts and videos to smooth the whole process for both the teachers and the students at Iran language Institute. It was a time full of stress and work pressure during which despite all the threats of Corona we had to work until late at night and start again early in the morning not to fall behind the class schedules. Then, after all the materials were ready, I was promoted to the position of being responsible for Teacher Recruitment, Development and Evaluation. During the whole time I rarely had the chance to have distance working as I had to handle a lot at the same time. Yet, all these experiences helped me to develop my own business of having a virtual language academy. Here, I have prepared more than 100 educational videos for the candidates of IELTS and TOEFL iBT separately by which they improve both their general English and the techniques needed to achieve acceptable scores. Then, we have online classes in google meet in which we just practice all the receptive and productive skills. As we see each other, it is completely like face to face classes. Moreover, I can have access to a wide range of resources on the internet from pictures and videos to charts and good websites offering language teaching. So as you can see, it can be far more productive than some in-person classes where there is limited access to such resources. I am also learning French in this way by hiring a private tutor.
Mary, you are as always so understanding and considerate about what is happening in my country. As I was telling about my online classes and developing educational materials, I forgot to tell you how hard it was because of all the Internet Filtering here. We have to use lots of VPNs to have access to YouTube, a lot of social networks such as Facebook, Instagram, Telegram, Twitter and even WhatsApp. Everything is almost filtered here and unfortunately we even do not have access to many British sites. Despite all these, I can say that I am happy with whatever I have achieved so far. And one main reason for developing my own virtual academy was that I could not abide by all the limitations and restrictions put on online classes at the ILI.
However, I have some news to say. I really don’t know from a westerner’s point of view this could be considered good or not. 😅
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