Calling all triple negative breast cancer patients in the UK
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Hi, Sylvia,
Thanks for trying to explain some of the complicated political process in your country. "The Tudors", which is a dramatized telling of the life of Henry VIII, has been showing again on TV. I watched another episode last night and the split between the Protestants and Catholics has been going on a long time, hasn't it. In this episode Henry and his 5th wife, Catherine Howard, went on a "Progress" to northern England to try to repair the rifts caused by the North rebelling against the new religion, which rejected Catholicism, started by Henry VIII for his own purposes. All was well until King James of Scotland was set for a meeting with Henry to seal the peace, and James refused to show up. As the show ended another skirmish on the border was beginning. Anyway, in this respect, I can see how religion can indeed cause problems between believers. Henry's oldest daughter, Princess Mary, was also with him and was much admired by the people of the North, and she also still adhered to the Catholic faith.
In this country, present day, things are getting very strange and violent not having to do with religion. A Congressman is in the Hospital in critical condition after a self-proclaimed Trump-hater (now deceased) went on a shooting rampage at a practice ballgame where there were Republican Congressman and their staffers practicing for a charity event. I believe 4 staffers were wounded. There is a violent element which has come out since Trump's election, they refuse to accept the results of the election. They seem to be absolutely fanatically opposed to him, and paint him as the worst thing since Lucifer himself. Most of the media seems to encourage this behavior, I read an article this morning that a popular website belatedly removed from its' site after leaving it up for a day or so. It called for the President's execution for treason, absolutely crazy, nothing of the sort has been demonstrated against him. As you said, he is trying to carry out the things he promised to do before the election.
My DIL is home after her BMX with reconstruction, she is in quite a bit of pain. And is now very constipated from the pain meds. Her husband and son came to my house and took my power recliner so she doesn't have to struggle with getting out of their recliner; it was suggested to her by her doc to sleep in the recliner for 4 weeks to avoid rolling over on her surgery sites. It kind of makes me glad I didn't have recon, although I think I would have an easier time fitting clothing well if I had done it. DIL's doc is almost positive there is nothing in her lymph nodes, but they had to send some for biopsy just to be positive. She should find out by the end of the week. Probably no chemo, yay!
I agree about Assange, he seems to have no particular alliance, but likes to pull back the curtain; and is very tortured for it.
I am not familiar with Lee Camp, I shall look him up and see where he is.
It has been a very busy week, I shall talk to you again soon,
Love, Mary
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Hello Mary,
Thank you for your latest post. The history of the Tudors always makes interesting television, but it is always a bit romanticised. Their history is important because of the way Henry VIII's decision to divorce his first wife, Katherine of Aragon, and marry Anne Boleyn, all in the name of a male heir, changed the course of history in this country. He broke with the Pope in Rome and made himself head of the Church of England. Throughout the Tudors and the Stuarts there is the battle of monarchs with Protestant versus Catholic as the most important factor. The Hanoverian, George I, who spoke no English, was brought in to keep the Catholics at bay. It is about time all this nonsense was sorted out and we got rid of the Monarchy and became a real democracy.
We are living in very nasty, violent, difficult times and I think ordinary people have just had enough and are probably resorting to violence because nothing else seems to work. It seems that in the US there will never be any peace for Donald Trump. I ask myself why he wants the hassle of it all? Over here, I think we are heading for another General Election and even another referendum. I even think that perhaps the powers that be will soon be telling us that for our own good we cannot be granted the result of the referendum because it is not good for us!
I was glad to know that your daughter-in-law is back home after a bi-lateral mastectomy and reconstruction. That is a lot to go through and I am not surprised she is in quite a bit of pain. She will need a lot of rest to recover from this. Reconstruction is a big deal and it is not something that I ever contemplated. It does make surgery a lot longer and more complicated.
It is good news that there is nothing in the lymph nodes, but since they removed some for testing, she should be careful with the arm. I was told to sleep with a pillow near me and to rest my arm on the pillow to make it slightly elevated.
All the news here is about the fire in a tower block in North Kensington in London. I do not suppose we shall ever get the truth about it.
On Monday negotiations are supposed to begin with the EU about the UK leaving. On Wednesday we have the new Parliament with the opening of Parliament by the Queen. It is so archaic that if Henry VIII happened to pass by, he would feel quite at home.
I have read the latest Chris Woollams and have been concentrating on the various articles about the importance of the liver. The main article is entitled A clean, efficient liver – for a better immune system, anti-cancer strength and all-round health. It makes interesting reading and I think everyone would benefit from reading it.
That is all for now.
Love.
Sylvia xxxx
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Hello Everyone,
I am just popping in to say that today June 20th 2017 I have now reached twelve years since diagnosis. It seems such a long time ago.
The thread is very quiet, but it is summer and I hope you are all taking advantage of it.
I sometimes wonder if we have said all we can say about breast cancer and triple negative in particular.
I did read in the newspapers last week that the NHS will now be funding the very expensive drug, Kadcycla. This will be good news for those who need it.
I also read how beneficial Tai Chi is for cancer patients, both mentally and physically.
I do hope all is well with those of you going through treatment.
Here in the UK we are having a heat wave and the houses are not equipped with air conditioning, neither are many of the shops.
Thinking of you all and sending best wishes.
Sylvia xxx
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Hi, Sylvia,
congratulations on your 12th year cancer-free! That is so wonderful and something we all hope for. It would be nice to know how many other people are the same, maybe people that have once been here and we don't hear of anymore. When people drop away, I always hope it is because they are so busy with their lives and they no longer want to think about cancer.
The London Fire was terrible indeed, the last I heard the death count was up to 79. It is unusual in this day and age for a apartment building to burn like that with such loss of life. The authorities will probably figure out the cause of the fire but it might be a while till they do.
DIL is doing well, still just lying about unable to do much and very bored. 2 days after her surgery my nephew underwent surgery for a broken foot, there was a heavy weight dropped on it. The surgery was complicated because the bones were not just broken, but crushed. I certainly hope he heals allright from this, the surgeon was not expecting it to be quite so complicated.
I smiled when you spoke of Henry VIII feeling right at home if he came riding by Parliament this week, because it is so archaic! I have read the biographies of some rulers: Henry VIII, Mary Queen of Scots, Elizabeth I, Cleopatra, Napoleon and Josephine, Nicholas II of Russia and wife Alexandra for example, were all in constant fear of assassination or intrigue or overthrow or all of the above. I'm not sure why anyone wants the position, but I guess in many cases it was thrust upon them
I have also been looking at Chris Woollams post. Tell me, what is your opinion on detoxing of the liver, or the body in general? I have heard it from both sides, one says we must detox in various ways. The other school of thought is that our bodies are constantly detoxing, or trying to, on their own. I can see where, if one is taking in a lot of inappropriate food and drink, that it would overload the system. The detox described in his article doesn't seem too drastic, it does at least allow some food. I have seen some detox routines that demand long-term fasting, which seems unrealistic.
I tried to pull up the article on Alzheimer's, but was unable to get anything. Not sure what's going on there, it looks like the article was taken off the post.
I was happy to read that spicy food is strong against yeast in the body, good to hear. Also glad that coffee helps to ward off Type 2 Diabetes, since I do drink coffee in the morning.
I don't think I could survive our summers here without air conditioning, what temperature do you consider too hot? For me when it gets into the upper 80s F, about 31C to you, with high humidity I want the AC on. And then I leave it on all summer. When I was growing up nobody had AC, I remember tossing and turning every night in the heat of summer until about 3 AM when finally a cool breeze would come in the windows. My father would be snoring away in the next room all night, it didn't bother him at all. In the winter we had no heat at all except in the kitchen, so the bedrooms were about the same temp as outside. I would have 10 blankets over me, and I would sleep very well, but then would have to make the mad dash to the kitchen woodstove in the morning. I still leave my bedroom temp cold in the winter, old habits stick with me.
I will talk to you later, Sylvia,
I hope everyone here is doing well!
Love, Mary
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Hello Mary,
I just wanted to say thank you for your kind words and for thinking of me. It does mean a lot.
I shall talk more tomorrow when I do not have so much to do.
We are in the fourth day of a heat wave, which means the temperature is above 30 C in certain places. London is really hot. Here it is
about 29 C and very humid. It has been difficult to sleep.
I shall write much more tomorrow. I always enjoy your posts.
Love.
Sylvia xxxx
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Hello Everyone,
Sylvia, I'm on my lunch break, and just wanted to wish you congratulations on your 12 years, cancer-free! That's a reason to celebrate. If everything has been said about triple-negative, at least we are here, carrying on with our lives, and the newly diagnosed can come here to see that it's possible.
Mary, There is an annual National Cancer Survivor's Day. I thought it was sponsored by my facility at first, but that's not the case. It was warm, but there were tents outdoors, and there was no relay, or anything like it. It was more resource and demonstration based.
I agree absolutely. With doctors, sometimes all I really want to hear is "everything is fine," or "...everything is going to be fine. We think we can get it." I remember that I didn't relax at all until the general surgeon told me that last year. She gave me exactly what I needed emotionally.
Thanks for your recommendation of "The Last Empress." It has a great rating on Goodreads, https://www.goodreads.com/book/show/47306.The_Last.... I'll definitely put that on my list. It reminds me of another giant historical biography that I thought was compelling, "Marie Antoinette: The Journey," by Antonia Fraser. I always want my loaned books back too, because I reread my favorites. It didn't help much, but I bought a "chop" in Hong Kong long ago, so I could stamp my name into them.
The "Awesome Breastforms" are free to anyone who had a mastectomy or lumpectomy.They also send knit forms to those who recently had surgery, and crocheted forms to others, so they will be as comfortable as possible to wear. Recent surgery is not a requirement.
Marias, I hope you are doing well as you wait for your surgery.
I hope everyone else is having a good one.
Pam
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Sylvia - that is so wonderful that you have reached 12 years since your diagnosis - many congratulations - you truly deserve to be healthy because you live such a healthy lifestyle. Well done, and may you enjoy many more years of good health. You are a true inspiration.
I am doing fine - really much too busy with family, but it is what it is, and I am grateful that I have the strength and energy daily to be involved with their lives. I had a CT scan on Thursday so that they can see what is causing this protrusion on my right clavicle - I should hear later this week what the scan showed. I sincerely hope it is nothing to worry about.
We leave for Ireland on July 6th, so I must now put my mind towards preparing myself emotionally and physically for that and decide what to take with me in terms of clothing. There can be 4 seasons in one day there, but perhaps they are also having a heat wave? We will be gone for a whole month and I am already looking forward to coming back home and I haven't even left yet LOL!! My anxiety gets the better of me when I am preparing for a long flight and extended vacation. Once I am underway, I will be just fine. I am looking forward very much to seeing my 2 brothers and a sister who live in Northern Ireland.
The news on our national radio today said that 1 in 2 people in Canada will get cancer - so that is quite discouraging.
Celebrate your day and the remainder of this week. And of course, continue to take great care of yourself!
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Hello Mary,
I do agree with you that it would be nice to know what has happened to all the people that have posted on the thread since I started it in September 2010. On occasions I have looked back at some of the first pages of the thread and have wondered if they made it through the journey and are out there living life to the full. I find it very difficult when people just stop posting and disappear. This happens a lot. I remember how much I appreciated an Irish lady, Bernie Ellen, who posted a lot and made us laugh a lot, and posted to tell me that she was fine but that she would stop posting in order to get on with her life and deal with other issues. I thought that was very kind and considerate of her. I do hope Bernie Ellen is out there living life to the full and making people laugh.
I do appreciate it when former posters pop in to let us know they are celebrating another year of being cancer free and that they are getting on with their lives. We do hear from InspredbyDolce from time to time and that always makes me feel happy and motivated. There is also Bak94 who is a very long-time breast cancer survivor, posted frequently on this thread and TNs and did pop back in here recently. She also has a thread on this forum which is often brought back up to date.
If there are any people out there who used to post but suddenly stopped, remember, we are always glad to hear from you.
You are right about the London fire. The death count is about 79 at present. I doubt if we will ever get the real truth about what went on.
I was glad to read that your daughter in law is doing well. I can understand that she is getting bored but she must realise that all this takes time.
I do hope your nephew will make good progress with his broken foot.
Today is the opening of Parliament and the beginning of the new session. The Queen always attends this, but this year it has been low key because of her age. There were no gold carriages, no procession and no gowns and crown. She just read out the new government's programme for the next two years. Apparently she was in a hurry to get back home to go to Royal Ascot today, which is an important horse racing event. Her husband was not in attendance as he was taken into hospital last night. You might like to read up about the tradition of Black Rod, how he goes to the Commons, has the door shut in his face, has to bang on the door with his rod, gets let in, and then shouts Her Majesty commands your presence in the House of Lords. All the MPs then leave and walk over to the Lords for the Queen's speech. It is all in the same building, the Palace of Westminster, where Charles 1st was executed.
I always look forward to Dennis Skinner, a Labour MP, one of my favourites, who always makes some comment to Black Rod, and never goes to the Lords for the speech. This year he shouted out "Better get your skates on, the first race begins at 2:30".
I did read all the detailed information about how important it is to have a clean efficient liver. I went through all those headings, the Liver and parasites, the Liver and toxins, the Big problem in cancer – a "Fatty liver" ("A fatty liver affects more than 50% of adult Americans"),
What else helps clean and strengthen your liver?
I noticed turmeric, choline and inositol (both in soya lecithin), beetroot, Boldo tea, Milk Thistle, mistletoe, magnesium.
I have never heard of Boldo tea but I do drink mistletoe tea.
You will remember that I had homoeopathic oral mistletoe treatment (Iscador) throughout five years starting not long after I was diagnosed.
I have not yet clicked on:- go to Super Herb Artemisinin – also known as sweet wormwood. I know this herb because it was prescribed to me by the herbalist Gerald Green, along with Astragalus before I started orthodox treatment.
There is a lot of information to absorb here, but I would hope that following a healthy diet would mean that we do not have a fatty liver, but who knows for certain?
I had to laugh about the mention of Epsom Salts and Andrews Liver salts. These were common liver cleansers that were taken in the past overnight to cleanse the liver. They are probably just as good as anything else if we want to do some cleansing.
I do not know about all the detoxifying diets that are trendy today.
I am going to try to look back to see if I can find that article on Alzheimer's.
That is about all for today. The heatwave continues but the weather is supposed to change tomorrow.
Take care.
Love.
Sylvia xxxx
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Hello Mary, again,
Was the article about Alzheimer's something to do with the emails from Chris Woollams or was it something I had read in a newspaper? I have looked back on my posts to June 10th but cannot find anything.
By the way I have just looked at my diary and saw that I have written that you can have a VEGA test to see if you have a fatty liver. I have never heard of this. Have you? I have written it in my diary, so I must have got it from somewhere.
What do you think of the following quotes?
There is no defence against stupidity.
If it does not kill you, it makes you stronger.
I think they are both by Friedrich Nietzsche.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
It was nice of you to take time from your lunch break to offer me congratulations. As I said in another post, it does seem a long time ago that I was going through the shock and fear of cancer diagnosis.
I do agree with what you said about the usefulness of the thread and how we are all here together and carrying on with our lives. That must give hope and encouragement to all the newly diagnosed with breast cancer and triple negative receptors. We are all proof that we can get through all the chemotherapy, surgery, radiotherapy, test and scans and just carry on. Triple negative is not in the dark ages any more and at least the newly diagnosed know what tio expect.
I was interested in what you said to Mary about National Cancer Survivor's Day. It sounds like a very good idea and I do not think it exists in the UK.
It is good that we all seem to be readers on this thread and it is good that we can recommend books we have enjoyed. I do not read much in the way of fiction any more, but I do like non fiction books, especially anything to do with history, geography, politics, current affairs, health and nutrition and so on and so forth.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hello adagio,
It was nice to hear from you and I want to say thank you for your very kind words. I am so glad to know that I can be an inspiration to you and all others on the thread.
I was glad to know that you are doing fine.
Being busy with your family is probably therapeutic as it will keep your mind focused on enjoyable things.
I do hope you will have good news from your CT scan and that there is nothing to worry about.
I was interested to know that you are leaving for Ireland on July 6th, so I understand that you have to prepare yourself for such a long trip. Are you flying direct from British Columbia to Ireland or do you have a break somewhere? Ireland, like England, has very changeable weather. In the UK we have all been having a heatwave but it is supposed to break tomorrow. The experts are waiting to see whether the 34 C on this date in 1976 will be broken today. Back in 1976 we had a heatwave that went on for weeks. I was teaching French in North Devon and it was draining. There was talk of closing the schools and putting homes on stand-pipes. That was the year that Raymond and I met and we went camping in Wales. All that brings back a lot of memories.
I am sure you will like Ireland. I went to Northern Ireland, Derry, back in 1971 and I really enjoyed it. I went to see one of my brothers who was teaching in Derry at the University of Coleraine. I remember going to visit the Giant's Causeway. I found the people very friendly. We used to cross over into the Republic.
I can imagine you must be very excited to see your two brothers and a sister who live in Northern Ireland. Do your roots go back to Ireland?
I think we are all getting the news that 1 in 2 people will get cancer. We are told the same in the UK. We have to hang on to the fact that more people are surviving than dying. I think cancer is caused by a mixture of diet, lack of physical activity, environment, both outside and inside our homes, stress and anxiety and general everyday worry, not to mention a lot of medication.
I do hope you have a great time in Ireland and that you will send us photographs.
Love.
Sylvia xxxx
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Hello Mary,
I found the page where Chris Woollams talks about the Rainbow Diet and Alzheimer's disease. The title of the page is The Rainbow Diet – live younger longer. The article says the Mediterranean diet reduces protein build up and Alzheimer's, Parkinson's and dementia risk.
He has a nice illustration of rainbow hearts.
The rest is about various research that has been carried out on this.
A Professor Robert Friedland argued that 'cross-seeding meant clumped proteins produced by bacteria in the gut led to a similar occurrence in the brain and he suggested that amyloid proteins made by gut bacteria resulted in inflammation in the gut and brain'.
It is all about commensal gut bacteria and how they are known to respond to foods – particularly the natural high fibre diet of the colourful Mediterranean diet. There is more about UCLA research which shows that this rainbow diet with its colourful vegetables and fruit, fish, nuts, and olive oils, is known to reduce dementia, Parkinson's and Alzheimer's risk.
I am sure that all of us on this thread have got the message from Chris Woollams that your gut bacteria control your health and that feeding the good guys is most important. These good guys love the Rainbow Diet!
To me, it is common sense that this diet, call it Rainbow or Mediterranean, is a healthy diet and will help to have a healthy gut.
I hope this helps, Mary. I am going to make a cup of tea and sit down to listen to LBC with Nigel Farage to see what he made of the Queen's speech today.
I can feel the heatwave subsiding.
Love.
Sylvia xxxx
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Hi Sylvia and all,
Congratulations on being cancer-free for 12 years.
I just got the time today to pop up here. I have been busy going here & there with family.
My hair have grown and ditched my wig since last Monday.
A photo of Mayon Volcano.
Best regards,
Lou
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Hello Lou,
I am posting to say thank you very much for your kind words about my being cancer free now for twelve years. Thank you also for sending your lovely photographs. You look like a very sweet young woman.
I was very impressed with the photograph of the volcano.
How are you enjoying your visit back home in the Philippines?
I hope you enjoy every minute of your time there.
I do not know what is happening to the thread at the moment. It is strangely quiet. I suppose that in the Western world people are enjoying summer. It goes very quickly.
Take care and keep in touch.
Best wishes.
Sylvia xxxx
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Hello everyone,
I am wondering where you all are. Recently we have heard only from Mary, adagio, Pam and Lou. I do hope all the others in our group are well.
Rhonda, how are things going now? At what stage are you now with your treatment? I do hope all is going well. Are you going on any summer trips?
To Val, we have not heard from you in a while. I do hope all is well.
Hello Kath, in Australia, I do hope you are coping well. I know that it is winter in your neck of the woods.
Hello, Amanda, in the UK, how is work going? Do you have any more holidays planned?
Hello Hanieh, it is such a long time since we heard from you. Please let us know if you have decided to leave the thread and get on with your life.
Hello Marias, I do hope you are feeling much better than the last time you posted.
To my fellow Brits, Lamis, Kathy and Flo, I think you have decided to leave us but Lamis. I hope your mum has finished her treatment and is doing well. Kathy, I hope your sister is coping well with her treatment. I know that she will be getting great care from you.
Flo, I hope you are coping well and keeping in good spirits.
That is all for now.
For anyone viewing and newly diagnosed, please do not hesitate to post and ask about anything that is worrying you.
Best wishes to all.
Sylvia xxxx
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What's up peeps? I'm just saying hello, and wanted to see if anyone is doing the Matcha Green Tea bit. I'm a green tea drinker, but matcha has excellent benefits too. I found this out from watching Kelly and Ryan, and Ryan said he had started drinking it.
Sylvia, will you please post a small refresher, for all of us, of what you do in your daily diet, in the way of being a super survivor! Such as no red meat, no dairy, or whatever it is. And any supplements. And exercise. I see that we are celebrating 12 years of your healthy victory, and of course with your fame, we all want to learn even more. Please post your rituals!
Love you all ladies, and sending everyone hugs and kisses! Congrats Sylvia, so very very happy for you!
) XOXO,
Debra
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Hi Sylvia,
I just wanted to let you know I have two radiation treatments left. My chest is starting to feel sore and itch. I have been using aloe and a cream called Miaderm. After this I start Xeloda. My youngest son Jacob graduated from High School and I am so happy that he is out of school. He dislikes school and this year was a real challenge to get him through. I went to see Bob Dylan in concert tonight.It is hard to believe that he is 78 years old. I think I waited too long to see him, he tried singing songs that weren't his and it wasn't as enjoyable.
Love,
Rhonda
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Lou - you look so beautiful. I was so self conscientious that I wore my wig until my hair was making it hard to wear the wig, and my hair was way past my chin at that point. You didn't lose your eyebrows? My hair is now to my waist, and I keep trimming it (on my own), but my eyebrows never grew back, and my eyelashes are very short, also they never returned but just a tiny bit, so no mascara, too short for the brush! LOL
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Hello Debra (InspiredbyDolce),
I was so happy to see you popping in.
I see that you have been posting for nearly five years now. It is always good to hear from you.
Like you, I am a real green tea drinker and have been drinking it regularly for over twelve years. I drink Clipper decaffeinated green tea, Clipper pure green tea, both bags and leaf tea, as well as Pukka Matcha green tea. I really love the taste of it all and we read such good things about it as an anti-cancer drink. It seems it is all to do with polyphenols and catechins. I also drink Clipper white tea, which is also full of goodness. As for Matcha on its own, I did try a sample sachet on its own and liked it. It is very expensive here.
I was wondering who Kelly and Ryan are. Are they celebrities over in the US?
You asked me to post a refresher about what I eat and drink on a daily basis.
I have not eaten any meat since diagnosis and I was not a great meat eater for many years before that. I do not eat poultry either. I do eat fish, but it is mainly oily fish, such as wild Pacific salmon. I occasionally eat organic or free range eggs. I eat a little seafood such as cold Atlantic prawns or crayfish tails, but none of this is on a daily basis.
On a daily basis, I eat fruit and vegetables with the emphasis on a mixture of berries and some citrus fruit. The berries are mainly blueberries, blackberries and raspberries and the citrus fruit is mainly grapefruits, pink or red, and tangerines. I do eat either an apple or a pear. I also have grapes. At the moment I am eating large red grapes that are seeded.
For vegetables I eat a real mixture with an emphasis on the cabbage family. I do love broccoli and Brussels sprouts.
I eat Sojade organic soya yoghurt most days (with live culture). I usually grind up a mixture of seeds and use them as a base for the yoghurt. I often sprinkle dried goji berries on the top of the yoghurt.
I also eat a few nuts each day, usually almonds, Brazils, walnuts and cashews. I vary them so that I get a variety.
I regularly eat prunes for iron.
For me, the no nos are meat, dairy products, sugar, alcohol and processed or junk foods.
I should say that I often drink a glass of Alpro almond drink enriched with calcium and I have this with a vitamin D softgel supplement of 5,000 IU and two Solgar calcium supplements.
I am not a great one for taking supplements, as I think they are no substitute for food and I am concerned about the fillers. I do regularly take two probiotics as I do believe that a healthy gut is at the base of good health.
From time to time I take a multivitamin.
As for exercise, I just keep very active with everyday chores but do not go to the gym or anything like that. I do a great deal of gardening.
Even after twelve years since diagnosis I do not take anything for granted. I have people around me whose cancer has come back after thirteen years, but I also have someone who has had no recurrence after nearly thirty years and from what she has said I think that way back then she probably had triple negative.
I do eat bitter apricot kernels every day and have been doing so for over twelve years. At the moment I have about ten a day and usually have them with my green tea.
My biggest treat is Montezuma 100% dark chocolate. It is the best one I have found and you need only a few squares.
I try to learn not to worry about things, but I do not find that easy.
Thank you for your kind words.
Keep posting. We all love to hear from you.
I shall probably start to refresh breast cancer information so that new people viewing will get an idea of the cancer journey they will embark upon on discovering a cancerous lump. I think people seem more informed now, but they still need guidance and reassurance.
Wishing you all the very best.
Sylvia xxxx
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Hello Rhonda,
Thank you for posting and keeping us up to date with your treatment. You have nearly finished. Hang in there and keep treating your skin with the creams.
I do hope all goes well with the Xeloda. It will be interesting for all of us to see how you deal with this drug.
What is your son, Jacob, going to do now that he has graduated from High School?
I was interested to know that you had been to a Bob Dylan concert. He is somebody that I also like. I think these singers do not know when to quit. They cannot go on for ever, although they do try. Look at the Rolling Stones and Paul McCartney. My great favourites in the past have been Simon and Garfunkel, Joan Baez, John Denver, Johnny Cash and of course Elvis, Buddy Holly and Roy Orbison.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am now concerned about you, as there have been no posts. Let us know that you are fine.
Love.
Sylvia xxxx
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this is one of my little outbuildings. It's only purpose in life is to be a backdrop for this tangle of flowers . Sylvia, your pics of flowers are gorgeous, what a lot of bright colors, which I love! Thanks for worrying about me, i will write more later.
Love Mary
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Sylvia, what beautiful pictures!
Also, I think it is great that you will start posting refresher information - you mentioned something that I also noticed. People want to be informed these days, and I sure hope the doctors around the world are starting to realize that. I think they must be, because patients can access records online now (even though it's always a patient's right to their health information, the ease and transparency of these documents being available for patients online through their doctors offices or health care providers is an important step), some docs provide their cell phone or have open office hours, etc. Back in 2011, I came to your boards here because this is where I saw more information about health and wellness, which I was really on a quest to learn everything I can, from the internet, to others, to this forum and information within it. That's also why I wanted you to repost your daily lifestyle, because I found it helpful with me and planning my future wellness plan!
We are all so grateful for your ongoing support, research, and conversation. You are really a true leader in this community, and always such a great advocate for all of us.
The Matcha green tea I am drinking is very expensive, running about $30 an ounce. There is a difference between culinary grade and ceremonial grade, so I buy the ceremonial grade which is more expensive, but both have excellent benefits as you mentioned. I started first with culinary grade and then I tried the ceremonial grade. I researched to make sure it was from origins in Japan not affected by the nuclear situation a few years ago, and I get the organic. It has a pleasant sweet tea, so I don't have to add sugar in the raw in the green tea anymore (I only used a few sprinkles periodically). I either drink it straight, or I make my green tea, and then whisk up half a teaspoon of match, and pour the froth on top of the green tea. It is awesome! I will say comes with a side effect of extra energy, which may or may not prompt someone to do a pilates handstand and break a toe (that was me, 4 weeks ago, came down wrong, broke the toe, and they take 4-6 weeks to heal).
I also love how you get the updates from everyone, so if I am on here and want to catch up, I know I can find quick updates in your posts!
Talk to you all soon! Much love to all of you!
Debra
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Hi, Sylvia, and all,
As I said above, thanks for worrying about me! I have been very busy, the past 2 weeks have been very busy with our quarterly meetings etc. Usually it takes up most of one week, but this one occupied most of 2 weeks. My East Coast SIL came out, and I was usually home late (for me!) each night. Then I spent much of my free time doing lawn work and then putting myself into a painful situation, mostly my shoulder. I am seriously considering having the shoulder surgery in October, I truly dread it; but don't want to be so hampered by this. One morning I awoke and could not move my arm without extreme pain, about an hour later I was able to lift my coffee pot with my right arm again.
Thanks so much for reminding me that Chris Woollams' theory was that gut bacteria is one of the culprits causing the dread Alzheimer's disease. I read an article last night about another theory going about now on Epigenetics, which is saying that natural genetics can be overcome to a great degree by diet, exercise, and environmental control. That is very interesting. In my own family, my father came from a very large family of 11 children, of the siblings that lived into their late 70's and 80's, 3 of them were stricken with dementia/Alzheimers. My mother had only 4 siblings, she died young at 38, she has 2 sisters surviving into their 90's now with no dementia/Alzheimer's. They were all raised in the same community, with the same general diets, lifestyle etc. This seems like a case of genetics to me, if indeed we can change this it would be a great thing.
I see that Inspired by Dolce has popped in to say hello again, it is good to hear from her!
I read that they have decided one of the main faults of the London Fire was the cladding on the building, and there are more large apartment buildings with the same cladding. I saw also that this cladding has been outlawed in many countries, but not UK. It probably will be now! Still, the fire must have started somehow, and from the looks of the building there must not have been many safety devices anywhere.
MY DIL has gotten the all-clear on her lymph nodes, wonderful news! She will not have to go through the chemo or radiation, only the breast reconstruction. I know that's not easy, but not like the chemo damaging the entire body.
I did read some of the info on the Black Rod, and how they are responsible for security in House of Parliament. It is funny how they were all hurrying to get through before the start of Royal Ascot. I have not heard anything about the condition of Prince Philip, I assume that means he's not too bad.
Back to Chris Woollams' post, I don't know if you remember but I had some issues liver-related and treated it after chemo. I have taken milk thistle for many years, and it is supposed to be very liver-supportive. I remember that you were advised to take iscador, I had not heard of it before you mentioned it. I have not tried the Arteminisin, I remember Chris saying that it is an herb that one must be careful with because it can be overused.
"If it doesn't kill you, it makes you stronger." I would agree with that, at least mentally. Physically, I am still getting over my bout with chemotherapy, and dealing with the aftermath. My friend who was with me throughout my treatment told me much later that she thought I was going to die in the hospital when I was taken there after my first treatment. Mentally, I have learned a lot. Not just about cancer but about what is important in my life, and how much I can deal with.
"There is no defense against stupidity." I suppose that is true too, it is impossible to argue logically with stupidity. I would add another one, ""There is no defense against ideology." Rationality gets nowhere with twisted, dogmatic ideology.
I see that INSPIRED has popped in, she is always a cheerful voice. She is right about you, you have become an inspiration to all of us, and you are a tireless learner and researcher and you love passing on what you learn. Is that you next to one of your beautiful flower pics above?
I reposted one of my flower pics, none of the ones I took do justice to the colors in the tangle. There are purple coneflowers, lavender phlox, red honeysuckle, and yellow trumpet vine. There are also some white wildflowers, not sure what they are. Perhaps I need different lighting, this was a very bright sunny day.
I shall talk to you again soon, I do have another busy week ahead of me.
Love, Mary
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Hello Debra (InspiredbyDolce),
Thank you for your post. I am very busy at the moment with my work as a director in the apartment complex where I live. It is the period of inspections, such as Health and Safety, Fire Risk and Electrical Testing. I hope to have more time at the weekend to start the thread going again. It is very quiet at the moment with no new patients and yet I know that more and more women are being diagnosed with breast cancer. I have to keep reminding all those viewing that anyone from anywhere in the world can post here. I started it for Brits but it quickly developed into going anywhere in the world. It has made everything so interesting.
I do agree with you that a lot of people want to be informed and that doctors had better realise this fact. They cannot fob people off any more or impress them.
I was interested in what you said about viewing your medical records online. It is not something that I have tried and I do not know if it is available. After ten years as a patient, at my own hospital, I would be very surprised if, in the UK, I could view in full the complete folder of my ten years as a patient. I do not think I can even get my medical records from my GP. I would not think those records would have much to say, as I seldom went to the doctor's.
I was interested to know how you came to view this thread and why. I did post lots and lots of information and I was reading every book I could find on breast cancer. I need to go back to page 1, find the pages where I posted information and re-post it for new patients and viewers. It might be too much for me. With hindsight I should have kept a record of the page numbers containing information.
What do you think of my nutritional lifestyle? I remember reading your posts and thinking you were well informed.
I was most interested in what you said about Matcha green tea. I did not know there was a distinction and that you could get culinary grade and ceremonial grade. I think I might try that out on the local natural food shop that I go to regularly. The drink you make does sound nice and I am very energetic so would like to see what I am like if I am extra energetic! I do not think I shall go as far as you went!!!
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post and for your lovely photographs.
It looks as though we are both rather busy. Keeping the gardens and lawns takes up a lot of time. We are desperate for rain here in Exmouth.
I was sorry to read that you are having so much pain and I can understand how you feel tempted to have surgery. It is very hard making such decisions.
I am going to have to end for now, but I shall try to post some more tomorrow.
I do wonder where all our group has gone. Do you think they are all travelling?
I glimpsed at a post on a newly created thread because it concerned me. It was about a woman who was told she had IDC, was hormonal, was treated, given tamoxifen and an aromatase inhibitor and has now been told she had had triple negative. I think I have got that right.
She seemed to think that because of this she did not have IDC or that her oncologist had told her it was not IDC.
I do think that the consultants should explain that there are various kinds of breast cancer that a person can have and that IDC is the name given to cancers of no special type and that it is the most common breast cancer. They should explain that the kind of cancer is different to what receptor status a person has. You can have basically three types of receptor status – ER+, PR+,HER2-,or ER-, PR-, HER2- (triple negative), or ER+,PR+, HER2+ (triple positive). It should be explained that the most common receptor status is ER+, PR+.HER2-.
I would think she needs to ask her oncologist, if she does not have IDC, what kind of breast cancer she does have?
Since she has had a double mastectomy and ACT chemotherapy, I cannot see what else she can have with triple negative, except radiotherapy.
I am not surprised that she has been in a lot of pain for three years because she has been taking tamoxifen and an aromatase inhibitor that she did not need.
It seems to me that this is quite easy to explain to anyone.
Yes, that is me in the photograph.
That is all for now. I really need to stop.
Love
Sylvia xxxx
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Sylvia and Maryna - I love the photos of your beautiful grounds. I like the rustic nature of the shed and the wildness of the flowers growing up and over it. I also love the manicured gardens of your apartment grounds Sylvia - the colours are so vibrant - the hydrangea just beginning to flower are charming and is the last picture calendula? Each of the settings delight me in their own way.
On Friday, I have an appointment with a locum (my GP is on vacation) to discuss the results of the CT scan that was done on the protrusion on my clavicle. It has been about 10 days now since the scan, and I have not heard anything - so hoping that no news is good news. I will let you know what it shows.
I am starting to get myself ready emotionally for the trip to Ireland, and the suitcase is out of storage, so I can start packing.
Sylvia, I do have roots in Northern Ireland - I was born in Belfast, but have not lived there for many, many years - I go periodically to visit my family. I was last there in 2013, so I am looking forward to visiting with my brothers and sister. Prior to going up North, we will explore the Wicklow Mountains, Galway, the Aran Isles, Letterkenny, Donegal and Londonderry. It will be a long trip of 4 weeks and we will be driving, so the narrow country roads in Ireland will be quite the challenge for us. However, we feel that if we could do it in New Zealand, we can do it in Ireland.
Maryna - sorry your shoulder is playing up again - that must be frustrating for you. How is your knee doing these days? So glad that your family member does not need to deal with the nastiness of chemotherapy.
Inspired - so good to hear that things are going well for you. I have tried matcha and I did not care for the taste of it, so have never adopted it as part of my dietary regime. I am not as disciplined as many of our dear friends on the threads here - I love my coffee and the daily cookie LOL
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