Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk

Hello Mary,

It seems as though you have been having a whirlwind of a time! You will no doubt have many memories to cherish.

I was glad to know that you were not too unwell with Covid. It just shows that it is still well in evidence but we do not get that much news. Here in the UK the powers that be are now pushing a Spring booster vaccine. I know a few people who have been contacted by the NHS. There is quite a lot of publicity on two fairly new TV News channels, calling themselves "the people's channel" but I have some doubts about that. However I have followed the serious parts about all the health problems and excess deaths directly linked to the Pfizer MRNA vaccines. I do not think Raymond and I will be having the booster.

That is about all for now as I am still working through lists of things to do.

We can catch up later on everything and I hope our regular posters will assemble. We did not hear from HelenLouise again after she went missing with all the problems when the "technical experts" took over.

It is very cold here today.

Lots of love.

Sylvia xxxx

maryna8

hello

I didn't mention that, on our 2nd day in Barcelona we visited the very old 11th century monastery of Montserrat, high in the mountains overlooking the city on one side and ravines and mountain scapes on the other. There resides 75 monks still, although now they are all very learned men. There is a school, for boys, who sing in the choir until their voices change and then they are packed off home. They are scientists, librarians, teachers, musicians but all chose to come here and be monks, and honor the Black Virgin of Montserrat, in whose honor the place was built all those centuries ago. I'll Regale you with the story one of these days.

Also San Gimignano is the proper spelling for the old Tuscan walled city we visited

Later, love, Mary

maryna8

Hi Sylvia, Gill, Sue, Kath and anyone who's there

Finally found this site, are you here?

sylviaexmouthuk

Hello Mary,

I saw that you had posted on what we called our thread, but I am not impressed with what has been done to it. It has been completely depersonalised and has lost all its character and is devoid of the great personality we had given it. I do not think I shall be staying with it. What a mess! It was bad enough before but this is worse.

My comments "Let your food be your medicine and your medicine be your food" has disappeared and we all appear to heve turned into identical matchstick people.

This has spoilt my day.

Love.

Sylvia xxxx

maryna8

Sylvia, I agree! This is like work to find things back again, I did see videos on how to set your profile again, but it is a long video and I couldn't keep the beginning direction by the time I got to the end. This is just unwieldy and touchy.

I also looked for Private Messages but haven't found it yet. If you decide to leave here for good please send me a message there to tell me where you are in case I can get to UK sometime.

For now I hope to talk again soon.

Love Mary

sylviaexmouthuk

Hello Mary,

I just do not know what has been done to our thread. I read some of the updated stuff and was pretty annoyed to see that they have changed my updated note about how I had now reached 17 years and 10 months since diagnosis. It has somehow been altered to 17 years and 2 months!! I cannot find a way to edit this.

The whole thing is a mess and I cannot recognise our thread as the one I started. I looked back at page 1 and in the way is has been reproduced is not recognisable to me. Have you done any better? If so, are all our photographs of various things and people still there?

I feel so disheartened.

Love and best wishes.

Sylvia xxxx

rosiecat

Hello Sylvia,

This new website is absolutely appalling. I find it very difficult to negotiate, in fact I almost gave up. What on earth were they thinking?

All's well here. We had our son down from Scotland for a few days and the weather was quite good. He and Michael were out walking for much of the time. My tiredness is becoming worse so I stayed at home and rested.

Hope you and Raymond had some sunshine and have planned your strategy for escaping the Coronation celebrations. Will you be swearing allegiance to your King?🤔 I'd laugh if I wasn't so insulted.

Keep well Sylvia, I've had quite enough of this website for now.

Love,

Gill xxx

sylviaexmouthuk

Hello Gill,

I am appalled, upset and even insulted by this forum now and what the powers that be have done to it.

I am sorry to read that you are tired. Please take care of yourself and get plenty of rest.

I shall be so glad when all this stupid nonsense about the coronation is over. It is sickening and the money being spent on it is disgraceful.

That is all for now. let us all take a break. I do wonder whether AI has taken over this forum!!

Love and best wishes to you and Michael. XXXX

sylviaexmouthuk

Hello Mary,

I have just picked up the messages you sent as PMs. I am answering in the forum as PMs do not put the thread forward and so it looks as though no one has posted.

I do understand what you say, but personally I have never been interested in being part of social media sites such as Facebook and I do not like all this stuff about like, dislike etc.

I am not going to try to put the thread back to its original format when the ‘experts’ have undone it all. How do all the people that posted in the past put back their in formation when they no longer participate? The powers that be have destroyed the well written information they took the trouble to divulge to help others!

For me it is time to say goodbye. It will be 18 years, on June 20th, since I was diagnosed with non-hormonal breast cancer. I still do not take anything for granted as I know the older one gets, the less efficient the body works and there is more likelihood of getting cancer.

I do wish you and all those that have participated on our thread all the very best.

Take care of yourself and be very cautious of where technology is taking us.

Lots of love.

Sylvia xxxx

maryna8

Hi Sylvia, I will miss your wisdom and the good will you sent in your posts. I think you've been on the fence about stopping here and this change has pushed you over. I'm afraid our other friends, if they come back here, would have trouble finding us anyway.

I will check here from time to time to see if anyone has visited.

I dont like the new format either, I think people who have or had cancer would probably just like things to be predictable and comfortable, and not ever changing, which is what technology does. It has a mind of its' own.

I will send you one more PM, I hope you can answer it.

With love,

sylviaexmouthuk

Hello Mary,

Thank you for your post on the thread and for your PM.

The thread has been very quiet for some time and I think it was inevitable after going for such a lonf time. Together we had covered so much and it really felt as though we were helping people and everything seemed so worthwhile. Now, on the forum, we have ready made squares popping up all over the place with information. It has become a 'click' forum! It feels more like AI than humans!

I cannot believe the amount of unasked for information popping up to tell me that I have had three posts from you. It is so intrusive. Big Brother is watching us! I was so proud of the thread and from time to time went back to the first post with a feeling of pride. It has all gone now. Anyone trying to find their way back to us will wonder what has hit them.

I think rechnology is doing things just because they can. Yesterday I spotted an OpenReach man near our complex and a lost looking man wandering around. I called to him from my window, asked if I could help and then Raymond and I went down to see him. This OpenReach is all about installing fibre optics throughout the UK and they are working their way through Exmouth. The man was very nice and we were with him about an hour and helped him locate what he was looking for.

The consequence of fibre optics is goodbye to copper wires and probably the landline telephone. It will be a big disruption inside the apartments and communal areas and probably a lot of disagreement!

Only 5% of people in the UK do not have smartphones or computers and tablets. They will be in a lot of trouble. As you know, Raymond is a Chartered Engineer and knows all the problems with smartphones, the main one being that they are not designed uniquely as phones as are the old landline phones.

That is it put simply and in a nutshell.

We are having technology forced on us just because they can. We are going to be in big trouble when AI takes over and makes humans redundant. 1984 is alive and well!

Thinking of you and sending love and best wishes.

Sylvia xxxx

maryna8

Hi Sylvia,

Thanks for posting back, it is nice that Raymond understands so much of this new techy world. I saw an interview with Elon Musk last week, it was disturbing that he seems to be very unsure about what AI will be capable of doing going forward. He says that, although on the whole he doesn't like too much government regulation, he thinks it is needed with AI. I have gotten cynical, so much of government is so corrupt, I don't know what the solution would be.

I have had a parade of problems since coming back from my trip with Covid. The Covid symptoms are gone, but the tiredness remains, and seems to have settled mostly in my legs, where the neuropathy is a factor. I went through a week of back pain, (yes, I have degenerative disc disease); it seems most of my existing issues have been amplified. I am trying to take things as easy as I can, and I have made appts with my acupuncture doc, I think I need a big tune-up.

We have been begging for rain here, which is very unusual for us in the spring.

I still have my landline phone, the price goes up and up but it's nice to call my brother in Texas and not have the calls drop suddenly.

off I go, today is my Allergy re-test. I can tell the doc, no test needed, I'm still very allergic!

Talk later, love,

sylviaexmouthuk

Hello Mary,

Thank you for your post. You mentioned AI and I can tell you that it is something that frightens us very much. We wonder where it is all going and do not trust governments.

I was sorry to read that you are having problems with your bout of Covid on your trip. I do hope things will improve for you, and that you are not suffering from Long Covid. The Press and the powers-that-be are not being open at all about Long Covid. I have been reading about it and am shocked at all the people really ill with it. You might want to have a look at some of the information in The Daily Mirror articles on-line. There has been good coverage on it and interviews on GB News on the television.

I find I feel upset every time I see all the changes on breastcancer.org. How I wish it would go back to how it used to be. Our thread is not active and I do wonder if the regular posters are lost in a tech desert!

That is about all for now. I hope to hear from you and others soon. I was looking at a magazine from Force, a cancer charity in the hospital where I was a patient when going through my breast cancer journey. I saw a line describing triple negative breast cancer as uncommon and more aggressive than other breast cancers. I do not think it is that uncommon and I think all breast cancers are aggressive. I do not think that hormonal breast cancers are a bundle of fun and you are on medication it seems.

Take care.

Love Sylvia xxxx

moderators

Hi @sylviaexmouthuk,

We certainly hear how frustrating it can be adapting to technological changes. You shared that the notifications can be intrusive to you. There is an option to turn these off. If you click on the profile icon, which is located in the top right corner, you will see an option that says Account & Privacy Settings. Click on Account & Privacy Settings and on the next page you will see on the right-hand side menu that there is an option for Notification Preferences.

Click on Notification Preferences. You will be able to uncheck the boxes for each notification type, which allow you to remove the pop-ups and any e-mail notifications you may be receiving.

When you have de-selected the options you want, then click on Save General Preferences. The page will then re-load and your changes will be saved. You can then proceed to navigating the site as you usually would.

sylviaexmouthuk

Hello Moderators,

Thank you for your post. I think the character of the forum has been spoilt. My thread does not feel like the thread that I started.We no longer have the details of those that have long departed. They were there to help others lomg term.

The forum should be about the message and not about the medium. I and others are most upset about all this.

Best wishes.

Sylvia

maryna8

Hi Sylvia

I have been fiddling with this site this morning, and my diagnosis is still where it was, but it seems to have gone private. I think I need to change some things to public again, so they can be seen.

I sent you a PM last night, it was late so hopefully it wasn't too much rambling.

Talk later, love,

sylviaexmouthuk

Hello Mary,

I have just read your post. I do not think we shall ever get back to our nice, friendly thread any more. We seem to have lost our regular posters like Kath in Australia and Sue in the US. Even Gill is no longer posting. I do not think we can re-build this thread and bring it back to the way it was. I just do not like the format. It has all been changed for change's sake.

Thank you for your PM as well, which I shall answer in a minute.

We are living in a very difficult world and one that it is not easy to understand.

Look after yourself and make your days happy and meaningful,

I think it is still useful to follow Chris Woollams newsletter. There were some interesting articles in his last newsletter dated May 15th and entitled Treat your body holisitically. Articles 1 to 6 were all interesting.

1. The "Supermolecule" that controls your health.
2. How holistic dentistry can improve your overall health (this is a video).
3. The virus that causes cancer.
4. The truly Medical Mushroom.
5. The really helpful natural compound.
6. Can you reverse plaque in your arteries.

All the very best.

Love

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

Thank you for your interesting PM.

I was glad to know that you are feeling better and that the only medication you take is for allergies.

Thank you for your kind words about how I inspired you to eat healthily. I truly believe that food is your medicine and medicine is your food. Here in the UK we have a terrible problem with obesity and it will ruin the health service. Even children are becoming obese at an early age. So many people prefer to swallow a pill than make an effort to eat healhily. There is too much over-processed foods. I sometimes am astonished at the difference in people that I see between the 1950s and today.

I am not happy with the format of this thread and I think it has probably driven people away.

That is all for now. it is a sunny morning here and I am going to try to have a peaceful day and ignore all the horrible news that we have to try to digest.

Love and best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

What do you think of the chart put on our thread by the moderators? I have looked at it and cannot understand the purpose of it. I do not want any of the notifications but cannot find how to untick them all and nor can Raymond, so that is telling you something! I cannot find either the number of views since day 1 or the number of posts. That was very important to me. All I want to do is have serious discussions about all aspects of triple negative breast cancer and help and support patients. If I had wanted a Facebook or Twitter experience I would have joined them but I am not at all interested in them!

Lots of love.

Sylvia xxxx

sylviaexmouthuk

Hello Mary, Gill, Sue and Kath and any others who were posting before the Great Remake!

I was just wondering why there has been no sign of you for sometime. Please let me know if you have said farewell for ever or whether you have not found your way along the tricky pathway to being able to post a simple message regularly. You may have just got fed up with it all. I know that I am going that way.

It is a mystery to me that according to the sums here we have had more posts than views, which is simply not possible! It seems the posts are being counted from the beginning and that goes back to 2010, but the views are only being counted from the start of the 'New Look' technical invasion! I think Descartes with his logical reasoning would have something to say about that with his quote of 'I think therefore I am'.

Thinking of you all and regretting the loss of the old times.

Love and best wishes.

Sylvia xxxx

maryna8

Hi Sylvia

I think you have hit on it, this site has moved in the direction of Facebook etc. Perhaps it was thought necessary, I don't agree, but that is the world of tech. As soon as we learn something it becomes obsolete and we are told to learn something else. Maybe it's good for our brain?

I read an article about harder-to-get drugs, among them were some of the TNBC drugs. I will try to find where I read that, I think it was online at a site called Medpage Today. I also need to catch up on chris Woollams posts.

I saw ur message to our friends on this site, hope we hear from some or all!

Talk soon, ❤️

maryna8

Something odd.....I always put my name at the end of a post but it is always removed?

sylviaexmouthuk

Hello Mary,

I cannot understand why they are removing your name.

Thank you for posting, anyway.

I really think it is time to give up on this forum. I do not like the way the posts are dealt with. When i post to someone, I want it to look personal and meaningful and hate the 'leave a commnt' gimmick. This is just not our friendly thread any more and it looks as though Gill has given up.

Love

Sylvia xxxx

rosiecat

Hello Sylvia,

became very fed up with this site, so gave up posting regularly. Just dropped in today to see if you were still posting.

Hope all is well we'll with you and Raymond down in Exmouth. I was wondering if you had had your covid booster? I had mine a month ago. Pfizer this time. I had quite a strong reaction, painful arm and generally felt unwell for 24 hours. Fully recovered after that. Michael's too young at 70 apparently. I'm still classed as clinically vulnerable. Probably due to having sepsis so often. My GP says it may have compromised by heart and I've had high blood pressure for over 15 years. Can't think of another reason why I'd be vulnerable.

I've read absolutely nothing about any change to the diagnosis or treatment of triple negative disease. The blood test that's able to predict 50 different types of cancer has proved accurate in trials. We'll probably be offered this before long. How it will be of benefit when there's over 7 million people on hospital waiting lists is anyone's guess.

It would be lovely to hear from Kath and Adagio again. I read Mary's posts. I wonder how other threads are doing. I used to scan them for news, but it's too complicated now.

Take good care of yourself Sylvia and give my best wishes to Raymond.

With much love,

Gill xxx

rosiecat

sylviaexmouthuk

Hello Gill,

I just had a quick look at the thread and was thrilled to see your post.

I still feel very demoralised about all these changes here and do not feel it will ever be like it used to be. Everything is so sterile and lacking in personality and togetherness. There are no photograhs, no feeling of a homely get-to-tegether of friends who have been on a common journey together for a long time.

You, Mary and I have found our way back but it is still not the same and we have lost longtime friends such as adagio and Kath. As for Sue in the US a more recent friend, I have no idea what has happened to her.

Raymond and I have not had the Spring booster and are not going to have it. We have had about three emails from the NHS and about the same number of letters, but we are not going to have it. The country seems to be in ill health. There were about 30,000 excess deaths in the past year. Goodness knows what kind of things have happened to our body.

That is about all for today. We have has a very busy couple of days. There are too many people milling around Exmouth at the moment.

Love and best wishes to you and Michael.

Sylvia xxxx

rosiecat

Hello Sylvia,

We do seem to have lost that friendly, family feel that the site once had. It's much more complex now and I think others are feeling the same. I doubt if any of our old friends will be back. I fear that Helenlouise may no longer be with us. She put up quite a fight and enjoyed life. I always feel a bit uncomfortable about assuming one of our friends has died, without having the facts in front of me. But, as with Marias, I just wanted to say that they're missed and not forgotten.

I have several friends who have decided not to have the covid booster this time. There are some serious outbreaks in several countries at the moment and a rise in deaths, so I decided to take bite the bullet. I do have my concerns about covid vaccines, but on balance felt that covid was a bigger risk than the jab.

I've just read that a newly diagnosed breast cancer patient has been told that she has to wait 41 weeks for her mastectomy. What an absolute shambles the Tories have made of our NHS. All planned. Underfund, break, sell, line the pockets of Tory donors. We're so lucky that we had cancer before Boris Johnson decided to finish off free healthcare in the UK.

I thought that sewage spills might at least give you a break from the tourists - evidently not. It's probably the same here, just haven't been to the beach to find out.

Keep well and don't let your volunteering take up too much of yours and Raymond's time.

Love,

Gill xxx

sylviaexmouthuk

Hello Gill,

Thank you for your recent post. You always have something interesting and important to read.

I shall answer sometime tomorrow. I did hear on the news today about the shortage of radiologists and the long wait for radiotherapy and chemotherapy. This is scandalous.

Love and best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello Gill,

Sorry that I could not get back to you yesterday. Raymond and I had a very busy and stressful day. We had a telephone appointment for Raymond with the GP and it was supposed to be at 8:30 for 10 minutes and it did not happen until after 12:00 noon. It was stressful and we did not learn anything that we had not read on his online updated records with the results of a blood test looking for a variety of things. The result of this is Raymond has an appointment for an echocardiogram and we cannot even get this at the RD&E. We have to go to community hospital in the outskirts of Exeter. I keep telling them we do not have a car but it does not register. After the echo there is discussion with some specialist nurse. It looks as though the doctor thinks Raymond has heart failure. It is all very worrying.

On top of that there is a lot of stress and confusion about what is going to happen with my cousin and his dementia.

I do not feel at all at home with the forum as it is. It does not feel like it used to and it is an exercise in technology more than anything else. There is no spontaneity in the thread and it certainly does not feel like our happy band of friends any more.

I cannot express the anger and frustration that I feel about this country. The politicians have messed it up and do not seem to care. They are throwing our taxes away and do not even seem to be aware of all our wasted hard-earned money. Charity does not begin at home in this country.

The one good bit of news is that Johnson has resigned. Three cheers for that! I think he has got something up his sleeve. Nadine Dorries has resigned as well. I think she was deliberately not given any so-called honours and resigned just before Johnson. I think he will run in her Bedfordshire constituency and hope to get elected there posing as a man of the people! What a fraud!

That is about all for now. Raymond and I are going to try to have a quiet afternoon.

I hope you and Michael have a good weekend.

Love and best wishes.

Sylvia xxxx

rosiecat

Hello Sylvia,

My apologies on taking so long to reply. My very persistent cough and chest virus is back with a vengeance for both Michael and myself. Neither us can sleep or do anything much without provoking very painful coughing fits.

I'm sorry to learn that Raymond may have heart failure. Considering that we are constantly being told to leave our cars at home, it's frustrating that you'll have to travel so far for an echocardiogram. I suppose the hospital expects patients to fork out for taxis during a cost of living crisis.I do hope that Raymond has a problem that can be treated. The last thing he needs is to have to go through surgery again. Your cousin's dementia just adds to the stress. Life doesn't get any less complicated for you does it?

I listened to the Parliamentary debate on the Committee's report last night. How on Earth did Boris Johnson ever become Prime Minister in the first place? The Tories put him there and allowed him to lie and cheat the country. I'm afraid the NHS can't recover from 13 years of Tory Government and the chances of getting timely treatment for life- threatening conditions are becoming slimmer by the day.

This thread has become a lonely place since all the changes. Our old friends have gone and no-one new has appeared.

Stay well Sylvia and please don't try to do too much. Love to Raymond.

Love,

Gill xxx