Calling all triple negative breast cancer patients in the UK
Comments
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Hello Gill,
Thank you for your two latest posts.
I have read in the past that chemotherapy is only usually 5% successful. I remember very clearly that my oncologist referred to chemotherapy as palliative chemotherapy. I do not think it was ever described as a cure. I was told it was done before surgery, in my case, to shrink a large tumour to make it easier for surgery. I had appointments with the oncologist before each new chemotherapy session to see how much it had shrunk. She literally measured it with a ruler. Over the six months of chemotherapy it did shrink but it certainly did not disappear. I suppose that if a patient starts with a small tumour it may well disappear but I get the impression that with small tumours a patient has the chemotherapy after surgery, so whether you have a mastectomy or a lumpectomy the tumour has been removed anyway. The people that I know who had smaller tumours and had hormonal status for their tumours had just surgery (I think lumpectomies) and then radiation, so their cancer journey was much shorter, but of course they had to have years of medication. At the time I was going through this I did not meet anyone with triple negative status for their tumours.#
as I have said before, the oncologist told me that radiotherapy was used to mop up any stray cancer cells that had been missed.
I do agree with you that surgery is probably the most important part of cancer treatment, so it is important to get your cancer treated without delay and when the tumour is small, but I have also read that surgery is also not without risk. Some believe that surgery on its own can spread the cancer cells. There is not a simple solution.
It is important that patients take charge of their cancer journey, become informed, and insist that they have the treatment of their own choosing.
I do not feel optimistic about the future of cancer treatment in the NHS, unless there is a major overhaul. We have to remember the NHS was introduced in 1948 when there was no high tech equipment and treatment was simple and basic and importantly the population was much smaller. We are over-populated and over-medicated, and there is too much demand on the NHS. We need a health system for the 21st century and we need the staff to cope with it. We are never, without change, going to have a properly working health system with enough doctors and nurses. I do not think our present government even cares. All that clapping was a load of hypocrisy.
I would think that proton beam centres must still be working. The one in Manchester had been opened but I think the one in London was still being built.
I do hope you get rid of your summer cold quickly and then get to have a look at electric bikes.
Thank you for a very interesting post.
Love.
Sylvia xxxx
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Hello again Gill,
Thank you for your latest post.
I was wondering whether you were getting some hassle from the NHS because you had part of your cancer treatment, the surgery, done privately. I have heard of people getting hassle. In fact at one time it seemed that if you had any private treatment you could be refused treatment on the NHS. I really do not what the true policy is.
All you can do is investigate to find out whether this is a policy that has now been introduced or whether they have forgotten you. If they have forgotten you tell them to make a new and prompt appointment for your mammogram. These days there is no knowing what is going on. I know someone who was waiting for ever and in terrible pain for a hip operation, and so she went privately. I am pretty sure that after that she had to pay for continuing check ups etc. From what she told me I could not see that she had really had private treatment following the surgery.
I do hope you are able to sort this out. There is too much bureaucracy and not enough hands-on staff.
When I had my recurrence of lymphoedema, which is supposed to have prompt attention, even as an NHS patient and even though I had gone through all my cancer treatment etc. in order to get an appointment at the hospital with the lymphoedema specialist, I had to be referred back through my previous breast cancer consultant and I had to wait for two weeks to get an appointment. I did this, saw her and then had to be referred back to the breast care clinic for an ultrasound. Having done this I then still had to wait for an appointment at the lymphoedema department. Although I had the lymphoedema problem on October 17th 2017, I did not get an appointment to check it out until about late December and this was hurried along because of the sudden concern about a mole on the same arm.
I do not know where we are going.
We have finally had a lot of rain and it was needed. I do not know where I am going with our gardeners. On August 19th I had to tell them the grass was brown and parched so not to come to cut it. We have now had so much rain that it is green and long and too wet to be cut! What a climate this is but I prefer it to be up and down and not scorching hot like it is in so many parts of the world.
That is about all for now.
Take care and good luck with the bureaucrats.
Love.
Sylvia xxxx
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Hello Sylvia,
I've done some research and the NHS allows patients to have their surgery privately and then transfer back to their NHS hospital for the rest of their treatment. I also checked this with my consultant at the time. Nothing has changed. I think the system has simply lost my details. A friend had a problem with her breathing ten days ago, after testing negative for Covid, she was given a chest X-ray and told to report to her in GP in a few days. She did this and her GP looked up her results, only to find that they weren't there. Her GP chased up the results and her X-ray had been lost - she was actually asked if she was sure she'd had one, like me with my blood transfusion. of course, she now has to waste her time, the hospital's time and her GP's time repeating the X-ray. She used to be a smoker and is concerned about the possibility of lung cancer. All this confusion and atrocious record keeping causes patients so much more stress than necessary. The IT system is complicated and not fit for purpose, it's time they reintroduced paper as backup. I don't blame the staff at all, those on the 'shop floor' are usually very good.
Weather warnings for the rest of the week so I'll be staying indoors with my cold.
Keep well both of you.
Love,
Gill xxx
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Hi Sylvia, Hi Everyone!
Just feeling like checking in, saying hello, and offering much love to anyone going through this, in this crazy times of the pandemic.
Sylvia, has been a remarkable source of inspiration from anecdotal information and holistic observances, to sharing the leading news and treatments and methodologies of today. When I was an active member, I felt that by reading her information, I had just an extra bit of information, that I wanted to learn from and hear about.
In 16 weeks, I will celebrate 9 years. I remember when Sylvia posted her 9 year success, and it seemed so far off in the distance, and yet, here I am! Slowly but surely, one step at a time, one day at a time, the pieces of our lives are put back together, until we have something that resembles not only our life, but a glimpse into seeing a future. Not without freak outs, and 2AM panic searches on the internet, of course.
Being a survivor comes with much gratitude, awe, and appreciation every day for those who lead the charge, support the charge, and remain steadfast to helping others, even long after they are past treatment.
So today, I want to log in, and just give a big Shout Out to Sylvia, for her selfless contributions to this Community Board, and other's healthy journey. The collaboration of pooled information and support means so much to all of us. And to everyone who shows up, posts of experiences and helpful information to support us all, you also are appreciated.
Love you all, and cheers to the next toast!
Debra
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Here, here, I too thank Sylvia, gill and all others for a well done thread
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Hello Debra (InspiredbyDolce),
It was so good to open the laptop this morning and find that InspiredbyDolce had posted. I then read what you had said and was just overwhelmed by your kind words about me. Thank you so much. It makes everything worthwhile.
Yours is a name that I shall always remember because I always found everything you had to say interesting and wise. It is so good that you have stayed on the forum.
I want to congratulate you on your approaching nine years since diagnosis. Well done! I am sure that you have been doing all the right things.
I am sure that all those going through treatment will very much appreciate your words of love. It is difficult enough for patients going through treatment at the best of times but it must be so much more difficult during these surreal times of pandemic.
I hope that everyone will remember what you have said today about taking one day at a time and that by doing this we gradually put back together the pieces of our lives until we have a more normal life and can look towards a future.
It is certainly true that during the years of survivorshipwe have those moments of panic, fear, doubt and low spirits, but they disappear and we do have moments of relief and euphoria, especially when we get good news from mammograms, ultrasounds, physical check ups, scans etc.
Even now, when I reached fifteen years on June 20th this year, I still have moments of anxiety and wonder whether all is right inside of me. Because of the long-term side effects of all aspects of our treatment and some obvious such as neuropathy and lymphoedema, we can still wonder about others that may be there but show no symptoms. There has been much talk lately about heart disease in cancer patients, but we tend not to dwell on it and hope for the best. I know that recently there was talk of having long-term survivorship care programmes, and I cannot make up my mind what I think about having such programmes. As you know, I was always positive about being negative and being free after treatments and a period of check ups finished. I was glad not to be on any medication and I think I would not be happy being in a survivorship programme for life. I tend to keep away from doctors and do not take any medication. I do take a daily probiotic and high dose vitamin D.
it is absolutely true that all those who post on the thread and provide helpful experiences and helpful information are to be congratulated and thanked. Without these posters there would be no thread. It is a two-way transaction.
I do read the Calling all TNs where I used to post regularly when it first started and I shall never forget Titan who started that thread and gave me the idea of starting one for the UK because I thought we were in the dark ages here and I had gone through my own years of treatment without such support. I discovered bc.og quite by accident in August 2009 when I Googled Parathyroid disease and was looking for information, as I knew I was facing surgery because of it. I met Sam52 on the High Calcium thread and we went through surgery together and she later started the thread Parathyroid disease and breast cancer. From that I discovered the rest of bc.org.
Debra, you have made my day today. I wish you all the very best. Please keep in touch. On the TNs I am always looking for those that I remember from the early days. Not so long ago there was Sugar, a Canadian woman posting from Mississauga in Ontario.
That is about all for now. Keep well and keep safe.
Love.
Sylvia xxxx
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Hello Gamb,
Thank you so much for your post. It was good to hear from you again and many thanks for your kind words about the thread. It is so nice to read that you think the thread is well done. We do have some great posters on here.
I remembered that you did post here a couple of months ago and I remembered that you have been having a difficult time. I was hoping that Maryna would be able to connect with you because of the fact that you had both lost your husbands and had both been through breast cancer. She is having some problems and is very tired but I do hope she will come back to us as she has been with us quite a long time and has been a very strong poster. She knows how much I have appreciated her support on the thread and how much I miss her.
I was wondering how you are getting on now and I do hope that life is treating you better.
Did you manage to go back to work, and if so did you go back to working in a doctor's office? I would think that with the coronavirus that must be difficult work.
Have you managed to get up-to-date with your appointments for your breast cancer treatment? I do hope you, your sons and grandchildren are all well and that you are getting plenty of support.
Love.
Sylvia xxxx
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Hello Gill,
I just wanted to say thank you for the great contribution you are making to the thread.
I have just been reading back at some of the posts and I do feel very concerned that Mary has not posted since August 7th, and has not been seen on the forum since August 12th. I do hope that she is alright and is not unwell.
I am concerned about adagio as well because she has not posted since telling us about her heart problem and I have posted lots of information about this that I think might help. I do hope we shall hear from her soon.
I am concerned about Marias because in her last post to me she said she would post part 2 of her journey with breast cancer and thyroid cancer, but we have not heard. It could be that she is going through another period of extreme exhaustion and that she will post soon.
We are having a strange storm here at the moment. The weather is so unpredictable.
Thinking of you. Take care.
Love.
Sylvia xxxx
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Hi Sylvia and everyone,
A quick update on how things are going for me. I was able to get a consult via phone with a cardiologist and she reiterated that I would most likely need an aortic valve replacement. I am now on the waiting list to see a valve specialist. I have an angiogram on Monday August 31st which will help determine what kind of surgery I need to have. I am trying to keep as calm as possible. But it is very challenging. In my worst moments I feel defeated because I have always looked after myself - keep active and eat healthy foods - so unfair. But again I do appreciate that there are so many people worse off than me. Thanks for all your support and I will think of Raymond for encouragement - that it is possible to get over something like this - but on the other hand, if I die on the table or during the angiogram, then my time has come.
I will keep you up to date as I am able.
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Hi adagio,
It's definitely possible to get over your heart problem and you will!
Any sensible person would be anxious about undergoing heart surgery and of course, you have looked at what can go wrong. So, you have faced up to the possibility of not surviving, now put that to one side and consider that the majority of people undergoing valve replacement or other significant heart surgeries not only survive, but go on to lead full, happy and healthy lives.
I can absolutely understand why you feel defeated, betrayed even by your body letting you down, particularly after your healthy lifestyle. I remember Sylvia said the same about Raymond. It all seems a bit random, but remember that your healthy body is much better prepared for major surgery than a body damaged by years of smoking, drinking, junk food and so on.
I'll be thinking of you on Monday. The angiogram will be the first step over with and you'll have a much clearer idea of what happens next. Just one day at a time adagio.
With my love and prayers,
Gill xxx
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Hi Gamb,
Good to hear from you. Hope you weren't left with too many side effects from chemotherapy. Like Sylvia, I also hope that life is being a lot kinder and fairer to you these days.
I noticed when browsing, that you adopted a kitten in August. I'm sure that he or she has you fully trained by now. It's amazing how these little balls of fluff and claws take over our lives.
Keep safe and well.
Love,
Gill xxx
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Hello Debra,
I agree with everything you say about the thread. It's very down to earth and offers plenty of much needed support in those dark days after diagnosis.
I had to laugh when you mentioned the 2AM panic and internet searches, I think most of us have experienced this. This site kept me grounded and (mostly) sane in those first weeks. Congratulations on being almost nine years out, stories like yours really help other women to see that they too can get through this.
Love,
Gill xxx
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Hello Sylvia,
I've just written to you and then lost the whole thing just before sending. So annoying, here is a rough summary.
I wholeheartedly agree with Debra and Gamb. The amount of time and energy you put into the thread is a credit to you. There are very few threads which provide the continuity of support you have achieved here - this is probably the result of your answering every single post.
I too worry about Marias. The Guardian has an article about Colombia, stating that there's been seven massacres in just two weeks. How frightened people must be. It's really a miracle that people are still able to access any kind of hospital treatment at all. There's probably many who aren't. I do hope Marias continues to get her medication on time in all this mayhem.
I watched our Prime Minister addressing a group of schoolchildren in Leicestershire the other day. He was totally out of his depth and the children looked utterly bemused by his ramblings. I dread to think where this country is going. Europe has washed its hands of us, saying that we were wasting its time as there were no negotiations going on at all. Looks like someone forgot to tell the EU about our 'oven ready' deal. Johnson's dishevelled clown act is wearing very thin. I have no hope that our NHS will survive. The clapping was a complete farce.
I was given the contact number for the breast imaging department and duly phoned and left a message. The recording said that I would be contacted within two working days. I wasn't. Since diagnosis I've continually been forced to run around chasing treatment, mammograms, consultations and so on. It's so frustrating and stressful. The hospital should still be in special measures as it's getting worse.
The weather is fairly cool and sunny here. There might be a storm later.
Keep well, best wishes to Raymond.
Love,
Gill xxx
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Hello adagio,
I was so glad to hear from you as I have been wondering how you have been getting on. These things come as such a shock that we are stunned for some time and then somehow we get ourselves together and we learn to cope.
It is good that you were able to have a telephone conversation with a cardiologist and that you now know that you will most likely need an aortic valve replacement, which is what I thought you would need, given all that I learnt when Raymond was in hospital and from hours reading as much as I could in my big BMA medical book. These operations that take some time to do are quite routine these days and you are going to be alright. As always take one day at a time.
I do hope all will go well with the angiogram on Monday August 31st. That will be the first step in deciding what to do. Raymond assures me, having had the angiogram procedure, that it is straight forward and does not take long, just about half an hour. He tells me that the procedure is done either through the arm or the groin. They put a catheter in and then feed a wire or sensor through this into the vein and up into the chest area. He had it through local anaesthetic. It is very routine. He could see what was going on. Relax as much as you can while you are waiting for Monday and try to keep calm. He says the after effect is that you might have a slight feeling of being bruised inside the chest.
I can understand how challenging everything is for you for the moment. I can understand that feeling of defeat. I felt it very much when I was diagnosed with breast cancer back in 2005 because I had always taken care of myself. The breast cancer consultant surgeon who diagnosed it told me I should not have it and my friends said I was the least likely person they would have thought it would happen to. I did feel defeated and somehow guilty.
I went through the same feeling when I was told Raymond was going to have to have coronary bypass surgery for clogged arteries. I felt defeated, guilty and very upset because I have taken such good care of him for our forty-four years of marriage. He is tall, slim, looks healthy and is active, does not smoke, does not drink, has excellent blood pressure, eats the same healthy diet as I do and yet all this happened to him.
The GP says that we all end up with something!
We can always find people worse off that we are and there are some terrible illnesses around, such as motor neuron disease which killed a cousin of mine and another good friend.
You must take everything on a daily basis and be determined to get through this. If Raymond could do it with his arteries you can do it with your valves!!!
We know someone who is facing coronary artery bypass surgery and several aortic valves replacement surgery.
We shall be thinking of you on Monday. We look forward to hearing from you soon afterwards so that we know what is happening.
Take care.
Love
Sylvia and best wishes from Raymond xxxx
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Hello Gill,
Thank you for your post and for your kind words.
I shall answer tomorrow as I have to go out now to post a few letters and I want to get out while the sun is out and it is not raining. Raymond and I have been drenched once today. To think that recently we were begging for rain and now we want it to go away! We have to be careful what we wish for!!
I must just say that I saw on the television yesterday that there are 15 million patients waiting for treatment on a hidden NHS list! I also hear many complaints from people around me of the NHS failing them. A friend of mine has just gone off to Exeter chasing chemotherapy drugs that were not ready when she visited the hospital for an appointment. The Tory governments have been undoing the NHS since it was created in 1948.
I shall write more tomorrow.
Love.
Sylvia and best wishes from Raymond xxxx
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Hello Gill,
It is Saturday afternoon and I have just sat down to post.
I was sorry to read that you had lost your post. That is frustrating. I avoid this by writing the post in Word and then copy and paste into the thread. I keep saving it as I write.
Thank you for your kind words. For me the experience on the thread has been very enriching and interesting. I have met so many different people and from different parts of the world. I do find it disappointing when people just stop posting without saying goodbye and without saying why they are leaving. Lots of names stay with me even if the person has left and I shall always be wondering whether they are fine and have moved on or whether they did not survive. It is always a happy moment when someone pops in to say it is an anniversary or just to let us know they are still around. We always have to remember as well that, if there are no posts there will be no threads.
I worry about Marias as well, as she is living in a dangerous country and the same applies to Hanieh. I must try to read the article about Colombia. It must be a frightening everyday life for ordinary people. I have always been interested in South America because of having studied Spanish and travelled in Spain many year ago. At university I had a very good friend from Bogata, Colombia. He was doing a PhD on Virginia Woolf. Like you, I hope Marias continues to get her medical care.
Colombia seems to be in the news lately. I think there is a programme coming about nature in Colombia and how it has the greatest number of different species in the world that are being spoilt.
There was also a programme about an interview with a Wade Davis, a Colombian anthropologist. I know that his most recent book is entitled Magdalena – River of Dreams. I think it was from that programme that I learned that there are 52 million people in Colombia and that everything is financed by drugs. I tend to watch different channels on the television and am mainly interested in serious ones where I learn something. I watch RT and Al Jazeera and have recently watched programmes about World War One from the point of view of different countries, the people of which had been roped in as cannon fodder to fight for the British Empire!!
I give up on our Prime Minister and his useless government! I also watched that news about the Prime Minister and the group of school children in Leicestershire. He was so uncomfortable and he always looks so scruffy.
I think you are right that the EU has washed its hands of us. We are going out on a No Deal which nobody wanted.
I do not think the NHS will survive and I agree that all that clapping was a complete hypocritical farce and I did not participate in it. Where are all those doctors and nurses that Boris promised? We are now getting made up statistics about what is happening with Covid-19. They are greatly underestimated in my opinion.
I was sorry, but not surprised, to read that you are being messed about with the breast imaging department. I do hope you get some success.
I hope adagio keeps in close contact with us so that we can support her. As for Mary, I do not know what to do. Do you think she has just left us or do you think she is ill? She has been through such a lot.
There is a lot of noise outside with workmen digging up the road. For months now they have been replacing all the old gas pipes that are about 60 years old. The noise is horrendous.
That is all for now.
Love.
Sylvia xxxx
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Hello everyone,
Since the lives of all of us have been engulfed by the coronavirus I thought I would post a bit of information about the history of these viruses, plagues. The history goes back a long way.
The Plague of Cyprian afflicted the Roman Empire between 249 and 262 and the suggestion was that it was an influenza pandemic, but this is unsubstantiated.
The Plague of Justinian, 541 to 750, recorded as the first outbreak of the Bubonic Plague.
The Black Death, from 1331 to 1353, was the first of a series of European plague epidemics, which stretched to the 18th century.
Between 1361 and 1480 the disease returned every two to five years in England alone.
The word quarantine come from 14th century Venice, the Latin for 'forty'. It was used to describe the forty days of enforced quarantine for those on incoming ships to the floating city.
Hippocrates, 'the Father of medicine' and who taught us ' Let food be thy medicine', mentions the 'Cough of Perinthus' in 412 BC, an upper respiratory tract pandemic.
The first record of an influenza pandemic occurred in 1580 and since then influenza outbreaks have happened every 10 to 30 years.
All this is not to instil fear. Remember this was not coronavirus but remember the recurrence of diseases which affect vast swathes of the human species 'do not go quietly into the night'.
Doctor June Almeida first identified a coronavirus in 1964 and her findings on the strain B814 were published 1965 in the British Medical Journal.
The Spanish Flu outbreak of 1918 – 1920 is the most direct historic comparison to be made Covid-19. With this flu outbreak 500 million people globally became infected and about 100 million are thought to have died.
Population growth has to be assessed with these rates.
1900 there were 1.6 billion people on the planet.
2011 this had gone to 6.8 billion.
March 2020 – coronavirus peak, population estimated at 7.8 billion.
Over-procreation is obviously a problem but longevity, through medical advances, also plays a part but also through the adoption of a healthier way of living for many.
I do hope you will find it interesting to read a shortened edition of something I have been reading. I would be interested to know what you think about all this.
I do wonder where we are going from here.
Are we going to have to live with the virus?
What do you think of social distancing, masks, lock-down, easing lock-down, etc.? Has the planet got too small with all the air travel? Are we going to have to adapt to a new way of life and will we do it? Are we going to export it to other planets?
I think that as breast cancer patients we should all be worried about the terrible effect that the virus is having on cancer care and treatment with patients have to wait too long for referrals etc.
Are you suffering from coronavirus fatigue?
Wishing you all a good weekend and a good Bank Holiday weekend in England, Wales and Northern Ireland.
Best wishes.
Sylvia
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Hello Adagio,
I hope that your angiogram is now over and you're safely back home recovering.
My thoughts are with you.
Love,
Gill xxx
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Hello Mary,
Thank you for your PM. I am replying on the thread so that people know you are still with the group and also to save some time since I never have enough of it!
I can see that you are living a very busy life but at least you are getting some social life. Enjoy the get-togethers and do not worry about mixing with people. The effectiveness of wearing masks has not been proven, especially the ones available to ordinary people for everyday wear. In fact, from the Experts I have been hearing information about masks which makes me feel they could be doing more harm than good. Apparently lots of people are not wearing them properly, are putting them on and removing them too frequently and thus touching them and contaminating them. Some people are wearing around their necks and pulling them up when they feel it is needed. Others are not wearing them over their noses and so and so forth. It seems that only the masks (medical masks) worn by medical staff etc. are of any use.
Here in England, and I shall not say the UK because often Scotland, Wales and Northern Ireland do different things, we are told to wear masks in confined spaces, so we have to wear them on public transport, inside shops and on visits to doctors, dentists and hospitals. It is not easy to get access to the last three. So far Raymond and I have walked everywhere and put on masks on visits to the dentist's and rare expeditions to the shops. We find the masks extremely uncomfortable and are concerned about the careless way some are being discarded on the streets etc.
I think we are all suffering from Covid-19 fatigue and the contradictory instructions we are give about what to do. We were already suffering from Brexit fatigue and that still lingers on. It looks as though we shall be departing on a no-deal Brexit.
There is also chaos with reference to schools and universities.
I was sorry to read that you have been ill with sinus pain and congestion, but was very glad to read that you had tested negative for Covid. Did you have the swab test? Is it as nasty as we are being told.
It is true that the posts on the thread are always long, interesting and meaningful, but if just a few post it can become onerous for them. It is true that Marias posted quite a bit and no doubt she will come back. We know that everyone has their problems in their lives and it can all be time consuming. Marias is living in a difficult country, as is Hanieh who seems to have disappeared.
That is about all for now. Raymond and I have been sorting out paperwork today so we are going to take a break.
I do hope the situation will improve in your country but trouble seems to be breaking out all over the world. Ordinary people have had enough. In this country I would like to see another General Election.
Thinking of you.
Love.
Sylvia xxxx
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Hello adagio,
I am just popping in to say that I hope you managed to get some sleep last night and I can imagine that you are now awake and getting ready to go for your angiogram. I know it is very early morning out there in Vancouver, British Columbia. I remember when I lived in Montreal, Ottawa and London, Ontario, that we were five hours behind the UK and that out in BC it was eight hours behind the UK.
We are all thinking of you and wishing you well.
Love.
Sylvia xxxx
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Hello Sylvia,
Thank you for your response to my last post, I'll try to reply tomorrow. I completely forgot the time difference in Vancouver. Adagio would just be getting up at the time of my message to her. I do hope all is well and that she will have a much clearer picture of how the surgery will be done.
Keep well,
Gill xxx
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Hello Sylvia,
I've just replied to your last message . I doesn't show up here as I posted it on the 'Cats, cats, cats' thread!!! I can see it's going to be a long week.....
Michael says he'll copy it to this thread later today.
Love,
Gill xxx
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Hello Sylvia
I am here, with you in spirit at all times. Summer has been very busy, the puppy has added a lot to my life. Some of this makes me happy and some of it makes more work and some makes me want to tear my hair out. Tomorrow we are off to the groomer. Puppy's name is Buddy, and I thought he looked great, and now all of a sudden he looks like a shaggy unkempt canine; since he doesn't shed, I have to get him groomed every other month or 2.
We had a very rainy summer, which made everything grow like crazy. Also a lot of windy storms which drop a lot of branches in the yard. I am ready for fall weather, we had a very hot stretch which was so hard on flowers, and me as well.
Yes, people around here are tired of the restrictions of Covid. In our county we have had one death, an elderly man in his 80s who had multiple health issues. Our positive case count goes up, but most people have no symptoms. They are having everyone who is scheduled for surgeries of any kind to have a test, some people are finding out like that. And then the contacts, whenever someone is declared positive then everyone who was in his/her vicinity has to be tested. So on it goes. I have been going to friend's houses, and some social events, and been with family too. Being isolated can only go on so long, in my opinion, before one will be miserable.
I did not find the swab test miserable when I had the test, it only tickled. However, because of my frequent sinus problems I have had the nasal cannula run through my nose a few times, so the swabs were a non-event. That was very interesting, all the information you posted on pandemics. It really reminds me that we are here such a short time, we forget about the history of the world, and all the dreadful things that people have endured over the centuries.
You are right about the whole world having problems, it all seems so chaotic.
I will try not to be away from here so long. My birthday falls on Saturday, I think you have a birthday any day too, or is it today? Please mention when your day is again, I know a lot of people who fall in the Virgo category. I'm going to guess you are the 4th?
Greetings to all of you here, and best wishes to Adagio. I understand you will have a heart surgery and that is very worrisome. But as you said, Raymond has come through this well and doctors do so many of these heart surgeries nowadays. I am rooting for you to come through all this in good shape because you are healthy!
Be back soon, love, Mary
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Hello Sylvia,
Thank you for replying to Mary on the thread, now we all know that she's safe.
I've been having a problem with the site over the last few days. when I type a letter, my keyboard disappears - every time. I clicked on 'use plain text editor', next to the submit button and the keyboard no longer disappears, but the text is spaced out. when I submit the post, the text that appears is normal. Michael has no idea what's going on, I wondered if anyone else was having problems.
When I spoke to my breast cancer support nurse she told me that the waiting list for mammograms and appointments wasn't too bad. No one is answering the phone or responding to messages, which makes me wonder if the waiting list is kept short because patients can't get through to the hospital. My GP has referred me now, so I'll see what happens. There are plenty of reports in the newspapers regarding long delays in routine screening. What an absolute mess.
The Prime Minister has deliberately surrounded himself with incompetent 'yes men' . When he sells off our NHS to America, there will be no one in Government to oppose him. I've always feared my cancer would be back, now I have to add the fear of long delay and quite possibly no access to effective treatments at all. I'm so sad for those patients recently referred or diagnosed.
We went for a walk along Southwold seafront yesterday. The forecast was for a cool and cloudy day but with a jacket it was actually quite pleasant, especially when the sun came out. The beach wasn't crowded, neither was the town so it felt completely safe.
I keep wondering how adagio is. This is so stressful for her and her family, I'm hoping that surgery will be organised quickly.
Like you, I often look back on posts from years ago. So many people there who were desperate to find a community of women with a similar diagnosis. Facebook breast cancer sites are easy to find and supply a need, but nothing compares with the support offered on the vast majority of threads on this site and the information provided by the moderators. Sadly, it seems that almost all threads here have suffered due to the march of Facebook.
I hope Hanieh, Jags and Marias make contact soon.
Much love,
Gill xxx
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Hello Gill,
I went to Cats, cats, cats to read your post to me, for which, many thanks. I have just got Raymond to paste it back into our thread. I shall answer later. It is a bit of a mad day here!!
Love.
Sylvia xxxx
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Hello Sylvia,
Please tell Raymond that I'm very grateful for his help. I hope my brain fog will clear one day.
Off to the hairdresser this afternoon to have my older, curlier Princess Diana look trimmed.
Enjoy your mad day.
Love,
Gill xxx
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Hello Mary,
Many thanks for posting. It does not seem right without you on the thread so this is like a relative coming back home!
I can see that you have had a very busy summer and that the puppy, Buddy, has added a lot to your life. I know from others that puppies keep you very busy. What breed of puppy is he? What will you do when you want to travel?
Our summer has been strange as well. We had a lot of unusual heat and no rain. Then we had too much rain. The summer flowers have not thrived a much as they usually do. Now, all of a sudden, it seems like autumn.
As for Covid, the government has made a mess of things and is still making a mess. The trouble is that we are called the UK, but on the whole the four parts of the country have not been acting in harmony and have very much politicised everything. I think the statistics we are being given for deaths here are not a true reflection. Sometime ago we were approaching 50,000 and the government removed an incredible number and reduced it to 41,000. Are these the undead?
I think the US is probably testing more than we are.
It is true what you say about too much isolation not being good for people. I am sure that people will have been made ill through isolation.
I was interested to know that you had had the swab test and were not bothered by it. I do not know if ordinary people in the UK will ever be offered a test. I was surprised to discover that people like dentists, podiatrists, nurses and district nurses have not been tested. We are so lax in this country and most of the time I think it is because we do not have the equipment. People are being very lax about masks and just discarding them on the pavements etc. There is such a lack of pride here, especially in England, which is overpopulated.
I do wonder whether the world situation will ever calm down. There is too much inequality and too much greed.
I do remember that you are a Virgo as I am. My birthday was in fact yesterday, September 1st. I shall not forget it because last night we had a power failure on the street which put some of the apartments where we live in darkness. I also was surprised when watching Spotlight, Down Memory Lane, to hear the man doing the requests announce Raymond asking for a song by Lonnie Donegan for the birthday of his wife, Sylvia.
I do hope you have a nice time on your birthday Saturday September 5th. Will you be doing anything special?
Did you recover from your Rocky Mountain tick? I do hope so.
That is all for now. Take great care and do not overdo things.
Love.
Sylvia xxxx
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hi everyone
Just dropping in quickly to post some info on the news tonight about honey bee venom and tnbc! An interesting read. Happy birthday for yesterday Sylvia.
Hang in there Adagio. I’ve looked after lots of people who have had valve replacements due to the sequelaefrom rheumatic fever . U can do this!
Life is still crazy busy and I seem to be on the road all of the time. Stay well everyone
Much love
Kath
https://www.google.com.au/amp/s/amp.abc.net.au/article/12618064
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Hello Gill,
I asked Raymond about the problems you are having and he has no idea either why that should be happening. As you know, Raymond puts a post as I answer into Word, so that I do not lose it. In Word the writing is normal, but when it is pasted and put in the thread it all comes up in Bold letters, and then we have to make it as normal text by selecting the whole text and clicking on the Bold button to un-Bold it!!! I am not a great lover of technology as I think it is going too far.
I was interested in what you said about no one answering the phone or responding to messages. It is the same here. Everything is automated and no one ever gets back to you. It is a game of answering machines answering one another (or not!). I once tried to do this when Raymond was at the hospital in London and the game of answering machines was even worse. I just had to give up. Raymond was back home before I could sort it out! Please let us know if you actually get that appointment. From what I am hearing and reading, the situation is hopeless.
I think we all share the fear of our NHS being sold off to privatisation in the US. We need Parliament to get back to full session, so that Boris Johnson and his little 'yes sir' elves get some opposition. I briefly looked at PMQs today and it was useless and what a mess Boris looked, especially his hair! Have the 12 U-turns shocked it so much that it is falling out? His diction was dreadful and was on fast forward. The questions were not answered. I really feel we need another General Election.
The state of the NHS is terrifying for cancer patients of all descriptions, whether it be the newly diagnosed, those treated but haunted by the possibility of recurrence and those living with metastases. Where are we going?! Looking through some of the threads I do see different drug names appearing, especially the immunotherapy ones but doxorubicin (Adriamycin), epirubicin (Ellence), cyclophosphomide (Cytoxan) and paclitaxel (Taxol), docetaxel (Taxotere), and sometimes fluorouracil (Adrucil) still seem to be the most common and drugs such as doxorubicin have been around since the fifties. They are all lethal, but will they ever be replaced with something safer and more effective. Do the immunotherapy drugs really work? It would be interesting to hear from newly diagnosed breast cancer patients if they are being put on completely different chemotherapy drugs and not having the old ones at all. It would also be interesting to see whether the new and different drugs are given dependent on the type of breast cancer and the tumour status. This would seem to be the only way to make progress.
I was interested to know that you had been for a walk along the Southwold seafront. Raymond and I went there a few times and we liked it. At least the beach was not crowded. It has been heaving in Exmouth and Sidmouth, but quieter in Budleigh Salterton.
Let us hope there will be a bit more sanity now that the schools have gone back.
I do agree that Facebook cannot compare to this forum. I know Facebook only from what people tell me but I know it is not for me. Counting up hundreds of 'friends' is not for me.
I am not likely to forget my birthday yesterday. In the evening, just as we sat down to watch the second part of a documentary on PBS America, about the rise of Franco in Spain, and the dreadful killings carried out by him and the fascists, the television went off the air and all our lights went out. It was not anything within our apartment but as we discovered, it was a failure of the local transformer. We had to step into action, notify the power distribution company, wait for it to be put back on, and communicate with the rest of the residents. That was our evening gone!
Earlier on, I was pleasantly surprised on Spotlight, Down Memory Lane (on Freesat) to hear Raymond's name called out requesting a song by Lonnie Donegan for his wife, Sylvia's, birthday! That was the pleasant part of the day!
I do agree that we need to hear from Hanieh. Jags and Marias. Marias has not completed the second part of her explanation. I wanted to talk to Marias about Hector Abad Gomez and his son one of the best Colombian writers Hector Abad Faciolince. I saw someone talking about them on a television interview and I started looking them up.
I am glad Kath has posted because I wanted to ask her what is going on with Covid-19 and the feeling about the next strain of flu.
That is all for now.
Love.
Sylvia xxxx
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Hello Kath,
We are always glad to have you popping in. Thank you for your birthday greetings.
Thank you also for the information about honey bee venom and TNBC. Of course, it made interesting reading, but I would have to read it a few times to take it in. I picked up on the melittin in the venom and how the researchers reproduced it synthetically and found that it mirrored the anticancer effects of the honey bee venom. I also picked up on what the melittin does and how it causes the cancer cells to die. It says "It effectively shut down the signalling pathways for the reproduction of triple negative and HER2 cancer cells". That seems like good news, but we shall have to see how the research progresses.
I am sure that adagio will appreciate your words of support. Both my mother and Raymond's mother had rheumatic fever as children, and in fact my mother had it again as a young adult and so did Raymond's mother. They were both on medication to help the valvular heart disease but, when this was happening to them, patients were not offered surgery. When it was on offer they were told they were too old! I know that, now, it is offered very frequently and successfully, although it is a long surgery.
How are things going in Australia with the Covid-19 pandemic and the preparations for the next flu season?
I have been doing a bit of reading on the flu vaccine and I read that to understand how the flu vaccine works, it is necessary first to understand how the human body works and how the immune system is divided into two parts, the innate and the adaptive. I then found it all quite complicated.
In my reading there was quite a bit about the respiratory system and how it is much more than the lungs. It mentioned about how the common cold can become bronchitis and flu become pneumonia. Apparently Covid-19 has been found in both the upper and lower respiratory tracts.
I was wondering whether you are expecting influenza A or B this year and how H1, H2 and H3 etc. as well as N1 and N2 will figure? It seems to me that flu is very complicated. In the article it says that on examination it is said that the Spanish flu epidemic was the only influenza virus entirely derived from avian strains.
I also read that fowl are natural asymptomatic carriers of these flu viruses, whether they are domestic or wild.
The ups and downs of Covid-19 continue here and I see no end to it. It was a muddle from the beginning.
Your work must be interesting but very stressful. Make sure you take care of yourself. Let us know how you get on with your forthcoming check-up.
I recently watched a programme about Australia, Western Australia, and was amazed at the pictures of thousands of bats. They looked awful hanging in the trees. Because of what we heard from China, and transmission of the fleas on bats, to the animal pangolin, are they not a danger in Australia? We seem to be hearing a lot about transmission of viruses etc. from animals to humans. What do you think?
Love.
Sylvia xxxx
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