Calling all triple negative breast cancer patients in the UK
Comments
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Hello Hanieh and adagio,
I have read your very interesting posts and shall try to answer tomorrow. I am all out of time and energy today. Raymond and I have just watched the ninth and last episode of the videos. It was one and three quarter hours so it was quite exhausting. I watched it at about 4pm our time after a very busy day.
Adagio, I can see what you mean about the last episode. It was really a summary of a lot of the patients who have been told there is no hope from their oncologists, and then apparently have got rid og their cancer themselves. This mainly seems to be through good nutrition, especially fruit and vegetables and lots of blended raw foods.
The series is really showing us all the different ways of dealing with cancer and leaving us to make up our own minds.
Hope to talk to you tomorrow.
Fond thoughts to you both.
Sylvia xxxx
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Hello Michael,
We are missing you on the thread. With just you and Tom representing the males we need you.
Have you seen any of the videos and have you been keeping up with the latest posts? How is life in Northern Ireland?
Sending you best wishes.
Sylvia.
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Hello sam52,
I was wondering how things are going with your move to Worcestershire? I do hope all is going to plan.
I remember how informed you are about everything and I was wondering whether you have managed to see these videos organised by Ty Bollinger. I would love your opinion if you have.
Love.
Sylvia xxxx
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Hello linali (Lindsay),
I do hope you and your family are fine. Please pop in to let us know all is well. The last time we had from you was when you were going to have a holiday with a sister in England.
Sending you bast wishes.
Sylvia xxxx
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hi Sylvia / everyone
I was just reading through the comments on dental work. I have had two root canals and lots of fillings. I am a really healthy person always exercised , ate very healthy food however have really weak teeth and had lots of dental work. It got me thinking that maybe there is a connection with my cancer.
I did massage and aromatherapy at college and do feel that it can be very beneficial . Do any of you ladies use essential oils or have massages? I do know that many therapist will not do massages on patients who have had cancer . I have not had a massage since diagnosis but feel I would help me to relax.
Hanieh happy wedding anniversary . You have a beautiful family and seem such a lovely person.
Xx amanda
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Amanda - I had massage therapy all throughout my chemo treatments - my oncologist highly recommended them. I still have a complete body massage once every couple of months - it is so relaxing and invigorating at the same time. I have always used essential oils - but one of my new favourites is frankincense - it is known for its anti-cancer properties. I rub it into my scar, the souls of my feet and the palms of my hands and inhale the aroma. And recently I have been taking 2 drops under my tongue. I use doTerra oils which are pharmaceutical grade and very pure.
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Hi, Sylvia
I did not get to see the entire last episode. I started to watch and got into it about half an hour and here came one of the men who is working on my house. He got busy in the room off the kitchen where my PC is and we were chatting and by the time he left it was too late to watch! It was a long show too, longer than the rest. I think the people in the show who conquered their cancer were very brave to go against the status quo. I think of myself when I was diagnosed, I did not even really know there was anything except the status quo. I had several friends who died of cancer, but they all were quite far along when it was discovered and died quite quickly and I got the idea it was a disease that killed you if you got it, period, and the only people who survived found it early. So when I was diagnosed I just wanted it cut out quickly, and on with the treatment because that's all I was familiar with. The truth is that, like many of us, I never thought it would happen to me. There was none in my family and I had heard it was largely genetic. Then there was the factor of my husband's illness; I wanted to be over with things as quickly as possible for his sake too. So I followed my doctor's orders and was soon so exhausted that it was all I could do to just make it day by day. I have learned from this show that there are things you can do to help yourself stay strong, and there are doctors who think differently than others. It is so good to know that there are places one could go if the diagnosis becomes very dire. And I noticed some of the "cancer conquerors" treated themselves with good results, amazing. I'm sure it is true that going to some of these centers would be expensive, that is unfortunate but they have to support themselves and the institution somehow.
An added note: Two of my friends who died of advanced cancer (one oral cancer and one lung) died after only one or two rounds of chemo. They were too weak for it, and to almost all of us who knew them it looked like they succumbed so quickly because of the chemo instead of the cancer. The cancer would have killed them too, but they might have lasted a bit longer. I do know that the chemo impacted my body severely, and I have still not fully recovered from it a year after being finished. I am not saying chemotherapy has no place in cancer treatment, I am only thinking now that, if it's truly necessary, its' use needs to be supported with foods, therapies, and supplements that help the patient stay stronger throughout. I was told it didn't matter what I ate as long as I just took in calories.
I made an appt. with an oral surgeon for a consultation to see how it would be to get my affected tooth removed. It will have to be cut out because of complicated, twisted roots. I will see how that goes. I have an appt. next week with a surgeon to look over my shoulder problem since I have been told I should have surgery there since it is only getting worse. Not much to look forward to! At one point in my cancer treatment I told my husband that I saw a lot of docs in my future, I think maybe I am a fortune-teller at heart! When husband was alive we saw a lot of his doctors, and I have really had my fill of them.
I keep up with my acupuncture treatments regularly, every 2 or 3 weeks. When I first finished chemo, I felt so bad and was in so much pain that, over the next few months, I visited my family doc, a spine doc, oncologist and neurologist to try and figure out what was going on. None of them had answers, but they did all want to know if I was depressed! My answer was "Yes, but I don't want drugs, I want to know what is wrong with me." I was MRI'd and blood-tested and offered a lot of drugs, and at least learned I had no auto-immune diseases. Then I started acupuncture, and it soon became a life-line to me. The acupuncture doc noted that I was not absorbing nutrients, which answered a question I was asking. Why was I eating better but not gaining any weight? He inserted needles into the proper points and I have since gained 11 pounds and am back to the weight I was before all this started, somewhere around 125-127 pounds. Perhaps this would have happened eventually anyway, but none of the other docs I saw ever mentioned anything about nutrition or absorbing nutrients. I also find acupuncture extremely relaxing and yet amazing in the energy boost it gives when he hits the right points with the needles. Even when I was quite fatigued I would feel the effects. I would advise anyone who tries it to make sure the doc or practitioner is trained in the Eastern methods of acupuncture. Quite different than the Western method.
I haven't started any resveratrol supplements yet, I am unsure about how much to take. That was also not mentioned on the show; supplements are touted but not how much of anything. I do like organic red grapes and eat quite a few of them.
I agree with you, I would advise anyone not to be a complacent, silent patient. The problem, as I see it, is until you have cancer, or someone very close to you does, you are probably not going to be very educated on it. I certainly wasn't: I was schooled on lung, kidney and heart disease and even liver disease, but cancer was off my radar. I do believe that people are getting smarter about what they eat. But I live in a rural, agricultural area, herbicides and pesticides are in wide use here on crops. The effects of that on the air, I don't know, even if one does eat organically we still have to breathe the air. I guess I would advise anyone who gets cancer to go to the best center they can afford to get to, and if the diagnosis is very dire to try to get to a place where he/she can be helped unconventionally. I have a friend who went to an expensive center to get diagnosed and prescribed treatment for a kidney cancer, and then came back here to receive the treatment. He has survived 10 years with a difficult diagnosis, and has not followed any special diet or supplemental therapy, but has been on different kinds of maintenance dose chemos the entire time. Would he be better off if he did eat better? Probably, but I don't know. He trusts what he is doing and his docs are surprised he is still alive!
This has gotten very lengthy, I had better go and accomplish a couple of other things today!
Talk to you soon, Mary
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Hello adagio,
At last I have found some time to sit down and answer some posts.
I can understand how you found the last video, episode 9, the least satisfying. This was probably because it was just showing all the people that had been mentioned in the series and they were once again saying how they had "cured" themselves through various treatments when orthodox medicine had sent them home to die. I think throughout the episodes they are giving all the alternative treatments, showing how they have worked for the people presented in the episodes, and leaving it up to the people viewing to make up their own minds. That is all we can do. We can accept it all as truth or decide we do not believe it. There cannot be any harm in trying these treatments, especially if orthodox medicine has nothing more to offer.
I suppose it does come over as one-sided, but after all they are presenting these treatments as an alternative and the series is definitely an indictment of orthodox treatment, how lethal it is, how toxic and how it can kill people. All I can say is that orthodox medicine and all the nasty side effects is keeping lots of people alive and without it they would have been dead.
On a personal note I tend to feel that without the chemotherapy, surgery and radiotherapy that I had, I would probably have died. I shall never know really, because I did try alternative treatments and I cannot know how much they helped me. All I can say is that I did not suffer much during all my treatment and I was under the supervision of a homoeopathic consultant at the hospital in Bristol and I was referred to her by my breast cancer consultant surgeon at the hospital in Exeter, after I had had the diagnosis, fine needle aspiration, mammogram, ultrasound and core biopsy and was told that I would need surgery, chemotherapy and radiotherapy. I told her that I did not want the orthodox treatment for the moment and wanted to see what else I could do. She was fine with that and set up an appointment for me at the Royal Bristol Homoeopathic Hospital. I saw that consultant, she examined my breast and told me that I should have the orthodox treatment but she would help me at every stage with homoeopathic medicine.
Having been diagnosed in June I waited for a few months and started my treatment with chemotherapy in November. While waiting for that I was taking some kind of medication from the homoeopathic consultant during September and October that boosted the immune system and fought cancer and was also taking iscador orally (mistletoe) rather than injections because of the risk of needles while on chemotherapy. That consultant wrote reports to my breast cancer consultant surgeon after each of my appointments with her. There was no secrecy and I had homoeopathic treatment when I had my surgery and radiotherapy. I never felt ill and apart from the hair loss I just felt fatigue. I stayed with the Bristol hospital from 2005 until 2010, when it was felt I was ready to be discharged. That consultant treated many breast cancer patients from different hospitals and was formerly a breast cancer consultant. As I say, I shall never know the truth. I also did a lot to help myself, was on a good diet, kept active and also took immune boosters such as astragalus and pycnogenol. I do believe all patients have to help themselves and that we are all different and all our cancers are different.
I can understand how you feel about your own conventional treatment. I can understand it was a major decision in your life as indeed it was in my own. I remember the day I went back to the hospital in Exeter to see my breast cancer consultant and said that I was ready to go ahead with the treatment. I did not know really what I was going to say but I said it. She immediately set up an appointment with the oncologist and from that time on I put everything I had into getting through the long treatment ahead and never looked back.
There is nothing we can do about the stem cells. That was certainly never mentioned to me. We just go through the treatment, deal with side effects until we get to the end of the journey and are told NED. We are not told we are cured. I remember my breast cancer nurse telling me that at the hospital the staff did not even use the term remission. She said that was what the patients used. After the NED we go through the years of check ups, with all the fear involved until the day we get discharged. We then live as normally as we can, knowing that the cancer can come back, but hoping it will not.
We have to hang on to the fact that the treatment we have to keep us alive is doing just that and that although some of us do not make it, the majority of us are surviving and for a very long time. We just have to hope that the situation will improve and not be so devastating in future.
For the moment we cannot do anything about the fact that the treatment available conventionally does not kill off stem cells.
One of the things that I do not quite understand in all of the orthodox treatment is why chemotherapy and radiotherapy cannot deal successfully with metastatic cancer. Since chemotherapy drugs are systemic, why can they not kill off cancers that have settled from the breast in other parts of the body?
I do agree that in the videos there is no mention of the cost of all this alternative treatment and there is no doubt that it will be very costly and therefore available only to the wealthy. When I was first diagnosed and picked up that first edition, for me, of icon magazine, I read about treatment through hyperthermia and light with one of the private doctors mentioned there. I phoned up and had a quote of about £4,000, which I could not afford anyway. In addition, I was told it was only suitable for small tumours and I had a large tumour.
Of course, for most of us, especially in Canada and the UK, where we have a medical system based on contributions from tax but free to all at the source of treatment, we shall go for that. In order to try alternatives it would have to be available under the same kind of system or available under the insurance based system in the US.
I think the most important thing to have imprinted on our minds from this video series and all the information that is coming out is the paramount importance of a healthy diet and lifestyle. We can control that to a large extent.
In the videos many names kept coming up with which we on this thread will be very familiar, among them vitamin D, turmeric and green tea.
Like you I took what I thought I would during all of my treatment and continue to do so. Eating healthily is not that difficult but eliminating all the toxins that come from non-food products, such as cosmetics, toiletries, household products, garden products and above all the external environment, is more difficult, but we can only do our best.
I picked up in one of your posts the mention of frankincense. This was mentioned quite a bit. I saw a note from Ty Bollinger saying that the natural food stores selling it had sold out. I must admit I have never noticed it in the stores here. Do you get it on line?
That is about all for now. I am off to eat my rainbow bowl of fruit, mainly berries, my mug of Clipper decaffeinated green tea and my bitter apricot kernels!!!
Sending you fond thoughts (organic of course!).
Sylvia xxxx
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Hello everyone,
I am popping in to let you know that although the video series ended Thursday, apparently it has been extended over the weekend for free. The link is:
Apparently there have been loads of questions coming in so that might be quite interesting to look at. The links are listed at the above site.
Wishing everyone on the thread, viewers and posters all the very best. Whatever stage of treatment you are at, just keep focussed and positive. You can get through the treatment and you will come through the long journey and get on with a normal life.
Best wishes.
Sylvia.
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Hello adagio,
I forgot to say with reference to the Royal Homoeopathic Hospital in Bristol that it is an NHS hospital and all my treatment and appointments were free. There are only two other such hospitals in the UK, one in London and one in Glasgow. There is a lot of opposition to this kind of treatment here and I would not go to just anyone calling themselves a homoeopath. I just did not want you to think that what I had was expensive private treatment. I am a great believer in our NHS system and the Provincial ones you have in Canada.
I was very interested to read in our papers that you have just had a General Election and that Justin Trudeau had been elected Prime Minister. I was in Canada when Pierre Trudeau, his father, was Prime Minister and Rene Levesque was the Premier in the Province of Quebec. I found those times very interesting when I was living in both Quebec and Ontario. We do not get much news about Canada in the UK.
Best wishes.
Sylvia xxxx
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Hello Amanda,
It was nice to hear from you. Like you I have always taken care of myself and kept active but have had problems with my gums, which affect my teeth. I did not know I had problems with my gums until Raymond and I moved to London, Ontario, from Ottawa, Ontario, in Canada, and I naturally had to find a new dentist. Ironically the new dentist was English born and he said I had problems with the gums and referred me to a periodontist at the University Hospital there. I had regular treatments for a few years, which consisted of a lot of probing of the gums to find out how bad the gums were. Ironically my teeth were strong.
It was about fourteen years ago when we moved here to Exmouth that the dentist I chose then and with whom I am still a patient, told me that what I had was genetic and would have been inherited from my parents. My three brothers have this as well and it is something to do with bacteria in the mouth and apparently there is nothing one can do about it. I just have regular dental treatment every three months to keep an eye on things.
We have to remember that cancer is a multi-causal disease and cannot be pinpointed, I think, to any one thing. Try not to worry about root canals, fillings etc. I do not think we have any real proof about anything.
I think that, what we can say about our breast cancer, is that for some reason the immune system did not work and failed to see off the cancer cells that are present in the body as it does all the time. The failure of our immune systems to do this just shows that, for whatever reason, it was not working properly.
There are many risk factors for breast cancer, but, as was explained to me by my medical team, a risk factor does not mean it caused the breast cancer. With me I had, probably for a long time, an over-active parathyroid gland and there is research that points to a possible association between this and breast cancer, or a common cause for both problems with x-rays during childhood. When children Raymond and I were of a generation that was subjected to these x-rays. We can drive ourselves mad thinking about all this. The best therapy is to accept what happened with a diagnosis of breast cancer, get through the treatment, take extra care of ourselves in everyday life, live as normally as possible and look forward to every day with confidence.
I can see no harm with massage and aromatherapy. Did you study it at college? I know it was used as complementary treatment at the hospital in Exeter where I was a patient and also by Hospiscare in Exmouth. I did not want any, but not for any particular reason. I am sure it is a way for cancer patients to relax and to help with anxieties. These treatments were offered to carers as well and Raymond tried head massage and reflexology.
Adagio mentioned that she uses essential oils and uses frankincense. I am thinking of trying something like that to massage my feet to see if it will help with the neuropathy caused by the chemotherapy drug docetaxel (Taxotere). If I were you I would try the massage. A friend of mine here, not someone who has had cancer, regularly has massages for back pain and says she finds them absolutely marvellous.
I am not keen on any kind of perfume or fragrances, so I do not know if I would like some of the oils. Unlike a lot of people, I cannot stand lavender. Everything I buy is unperfumed. Raymond suffers from allergies and is also very sensitive to smells. We buy unperfumed Dove soap, unperfumed liquid soap, and use mainly Dr Organic toiletries, which do not have much of a smell.
I am wondering whether reflexology would help with chemotherapy induced neuropathy.
Keep in touch and take care.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post. I was interested to know how you do your meditation and how you bring about complete relaxation. I think it is a very good idea that when you are doing this you try not to let any negative emotions and fears enter your mind. I am glad that all of that brings you peacefulness.
I think that, certainly here in the west, that life has become too stressful, hurried and noisy. At least here in Exmouth, in the part where I live, it is usually very quiet, but in the town and the seafront it can be very noisy. I love to be in my own apartment and to have peaceful moments just sitting being quiet.
I have noticed that it is almost impossible to go anywhere in public without being subjected to a lot of noise. In cafés and restaurants people are speaking very loudly and their conversations are intrusive. Mobile phones are often going off and people are having conversations on them for all to hear. English people used to be very discreet, quiet and courteous but that has all disappeared. I often wonder what has happened to this country.
I was interested to know that your daughter like English cartoons.
I bet she will be very good at English when she starts it.
Your photographs look really good. Happy anniversary and many more to come.
Have a good weekend.
Best wishes.
Sylvia xxxx
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Hello Mary,
I do not think you missed much with the last episode. They are all being re-run over the next 48 hours but I do not think I shall be watching it all again! It is just too time consuming.
It sounds as though you are having a hectic time trying to take in all the videos while you are having your kitchen done.
I think that a lot of people still see cancer as a death sentence, so we have to hang onto the fact that more people are surviving and that cancer is not a death sentence, whatever treatment we choose.
I feel strongly that the use of the words terminal cancer should be got rid of. Cancer that has spread to other organs should just be termed stage 4 cancer, otherwise it sounds absolutely like a death sentence and this is not the case as many people live for a long time with stage 4. With orthodox treatment the same procedures are used and they can keep destroying cancer. I happen to think, though, that in the end it is the treatment that causes death and not the cancer disease itself. I remember in the videos that there was a death certificate which said that the death was due to chemotherapy toxicity.
It is certainly not true that most cancers are genetic. It was said in the videos and I have read it elsewhere that genetically induced cancers represent less than 5%.
I agree with you that chemotherapy has terrible effects on the body and that they can last for many years and some, such as neuropathy, seem to be for ever. With chemotherapy we have to do everything we can in the way of good food etc. to recover from it.
I think something else we should have firmly ingrained in our heads is that orthodox medicine knows nothing about nutrition, so you have to get your own knowledge and feed yourself properly and remember rainbow is the name of the game.
Please let us know what transpires about your tooth and your shoulder. I know it is not for everyone but I think I have decided for most things concerning my body is to leave well alone if I possibly can.
I was glaad to know that you find acupuncture so beneficial. One of my older brothers, the one who died quite quickly from stage 4 cancer to the liver and pancreas, with the primary unknown, had acupuncture while he was in a hospice. He said he had found it very beneficial. His wife had been having it before for general health and also found it beneficial. I remember her telling me that the acupuncturist had told her how important it was to have warm and calorie filled foods during cold weather when she had been eating salads. He told her how important it was to keep the body warm.
I did not know that there were different types of acupuncture.
Take care, Mary.
Sending you fond thoughts across the ocean.
Sylvia xxxx
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Hi, Adagio
I have made an appt. with oral surgeon to see what he says, if he says okay to wait I am fine with that. So far it is just sensitive. But the dentist told me there is an infection there, whether I feel pain or not. Infection in your teeth is not good. Argh, it's always something!
I had not heard about not extracting wisdom teeth, that's a new one on me. Why is that? Seems like all they do is cause problems, but maybe if you don't have a problem one should leave them in......and get wiser, perhaps?
I think in regards to the video, and the cost of some of these places that people in dire straits go to for treatment.....I think it seems, according to the series, that it is usually people who have no where else to go. They have been told it's all over and would probably spend what they have to if they have it or can get it to get to such places. There are a couple of places listed on the show that are in the US that integrate conventional and alternative care that do accept insurance and are affordable. Once one gets out of the country it's a different story. Around here there are always benefit dances, meals etc. being held for people with steep medical bills to help them out.
I was not coerced into chemo either, I was told it was my decision. But I did not know enough to make an informed decision. My husband was also very ill at the time, and we had been so absorbed with his situation; I had done much reading on lung disease, heart disease and kidney disease. I had never given much thought to the possibility that I might get cancer.The docs also told me it was very aggressive cancer, so I thought I better get right on top of it and I went with what they advised. I am now more educated on cancer treatment, but was not at the time. Most everyone I knew with cancer had gotten diagnosed and died soon after, so I saw it as a probable death sentence.
I have been aware of the importance of nutrition for a long while, took supplements faithfully but my diet was not the best. The series has given me a boost also to get back on a better course.
I do take the Vitamin D, the turmeric, probiotic etc. but was investigating the medicinal mushrooms. Can you advise a good brand? I don't know where to start.
Sounds like you are doing very well. I was in Vancouver and traveled through the mountains of BC years ago; it was unbelievably gorgeous. Very pristine, and Vancouver was a very attractive, friendly city. To tell you how long ago this was, it was when the Rolling Stones kicked off their North American tour back in the 70's. A lot of time gone by since then!
Talk to you later, Mary
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Hi, Amanda
I read your post on massage, whether or not beneficial. I do have a massage once or twice a month, by a retired nurse who is a short drive away and very inexpensive compared to the masseuses in the city. It is a lovely experience. In my case I always carry a lot of tension in my shoulders and neck, and it really helps with that. Now when I am back in normal life and lifting and carrying the pain comes back but I am hopeful if I get my shoulder worked on that will help. I was taking a medication for a liver disease for 2 months, and while I was on it she declined to give me a massage. She said she preferred to wait until I was finished with the regimen because massage releases a lot of toxins into the body as the muscles are worked and relaxed. She is also very careful when working on people with heart disease, high blood pressure and requests a lists of medical conditions before she takes on new clients.
I, like you, would like to learn more about essential oils. I will be okay with it if the smells are not too strong, my sense of smell seems to have gotten very particular. I have used tea-tree oil for years, it is an excellent oil for sores and healing. I also like the lavender oil, if not too strong. I have a mint oil that is very good for stuffy head and sinuses. The series about cancer touted the benefits of frankincense, am curious about that.
I think Sylvia is right about us not worrying about past actions and health decisions, we shall have to put it behind us and do the best we can moving forward. I made a consultation appt.with an oral surgeon to talk about tooth extraction. I think that may be the best choice for me.
Talk to you soon, best wishes
Mary
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Hi Hanieh
I do enjoy seeing the pictures of you and your family, you seem to have a very close bond; that is priceless. Thank you for your kind words about me, and for remembering the death of my husband. I don't think bravery came into all of that, it sometimes comes down to just putting one foot in front of the other and passing through the experience. That was one reason I jumped into the remodeling of some of my living space. I thought it would help to keep busy and mind absorbed in something else for a while. It has worked; with the several different workmen that have been in and out of here and doing their thing and cleaning up after them and making decisions on paint, and cabinet color and tile and doorknobs it has been quite an experience. My husband was not one for changing things. He shared that trait with his mother, they both thought that if a thing was not broken it was just fine. I do miss him every day and hope that if he was here he would like the updates I have made.
I am very interested in many historical figures, one of them being Alexander the Great. I am not sure how he is considered by Persian people in this day and age. I am re-reading a book right now about him and the men who went to war with him. It is a fictional account based on historical fact, this book is largely about his defeat of Darius the III, Persian King and his conquest of Persia in 300-something BC. He was very fascinated and impressed by the culture of the Persian people, and this book covers that too. How his respect and affection for this culture upset many of his Macedonian troops. Very interesting.
I also think it is very interesting to hear about your life. What I see and hear on our news about your country does not cover a wide scope, and seems to cover only a certain group of people. Many years ago when I worked in a restaurant I worked with several students who were Persians, wonderful friends they were. I believe for the most part they finished school and returned to your part of the world.
I am glad meditation works so well for you, I admire your use of it and I think it is a difficult thing to shut down all the noise in the mind. When I get acupuncture the doctor puts the needles in and then leaves the room, shuts out the light and tells me to deeply relax for 20 minutes. I usually do go into a very relaxed place, with a feeling of floating and it is always a shock when the attendant comes in, turns on the light and says it's time to go. It is amazing, the amount of jumble in the mind that has to be calmed down!
Your father's villa sounds like a lovely place. If I get my shoulder back to a less painful place I would like to have my garden again. My main problem is the animals who eat everything. It is a very isolated site, and my plants would be besieged by raccoons, possums, deer, groundhogs and I don't know what else. I was down to 4 plants that they were not interested in, so I was only planting tomatoes, peppers, squash and cucumbers. Otherwise it was too much work to let them have it all! This year I had a bumper crop of pears on 2 trees. A family of raccoons ate them all while they were still small and green, couldn't believe it. First time that has happened. I also have to fight them for sour cherries and peaches. Fortunately, my brother always has a garden without the problems I have, and he is always willing to share his bounty.
Hanieh, have a great day. Talk to you soon,
Mary
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Sylvia,
I just wanted to jump in and say I share your "smell" problem. I went into a hardware store yesterday, was in there less than a minute and had to leave. There was such a strong chemical smell it hurt to breathe. I looked around at the many people there and nobody looked bothered at all. I took my cart back and almost ran out, instantly had a sharp headache and felt ill for about an hour. I have no idea what it was but it was bad and obviously I didn't get what I went in for. My sense of smell has gotten much sharper over the last few years, I have a good friend who wears a perfume that is almost too much for me.
Talk soon, Mary
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Hi Mary and all
I think one of the best things you could do after all these traumas was to do some changes in the place you live since there was a need for the cleaning up of all that reminders of the past. We should move on from what we have passed and remove all things that bring us negative energies. Every morning when I get up I try to smile and repeat some positive sentences to myself and thank God for another gorgeous day. I try to keep my house as clean and tidy as I can and avoid being in mess. Even my daughter has been grown up like this and she hates it when her room is messy. I think all things in life have some sort of energy that we can relate to. I always get rid of all the things that have no use to me and give them to those who may need . I have heard that keeping old unwanted things can bring us negative energies.
Also after this disease and after reading loads of books, I have learnt that if I want to be healthy and happy I should love myself and my body and admire myself in front of the mirror. Even getting old is so beautiful as every wrinkle on the face is reminder of experience and wisdom. Whenever I feel pain somewhere in my body I relax , massage it and say kind words to it. You can not believe what miracles I have experienced by this way. In order to boost my strength I do aerobics on even days and play badminton on odd days. I have asked my body to help me with all these. Also I have made some great friends here and there with whom I feel more energized.
Mary we have a long history of civilisation but some minorities in Iran who have the power in their hands are rendering some ugly pictures of the Persians to the world which resulted in our isolation. But in reality there are millions of Persians who think completely different and respect all human cultures, nations and ideologies. If only we could go back to our origins and our great Persian ancestors '.
Lots of love
Hanieh
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Hi Amanda
Thank you so much for your kind words. I also wish you and your loved ones all the best things in life.
Lots of love
Hanieh
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Hi adagio
Thanks a lot for your kind words. Try to do meditation and start with one or two minutes meditation and then increase the time. Aside from all the medication and sometimes above all the treatments our bodies and mentality are the greatest healers.
Wish you and your loved ones all the best
Hanieh
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Hi Sylvia
Thanks a lot for your posts abd nice words. I think you are really lucky to have the chance to live in a calm, quite place. Living in Tehran the capital and the busiest city in Iran I can't find much calmness in the hustle and bustle of city life.
From all the pieces of literature I studied during the time I was at university I came to know English people with their state of being discreet. I think it's a growing problem all over the world that people and their standards are changing. But as a teacher and mother I try to teach my students and my child that nothing is more important than manners.
Lots of love
Hanieh
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Hello Hanieh,
Thank you for your kind words about my posts. I try to do my best to help and support everyone who comes on the thread and also to keep supplying useful information.
I think you are a great asset to our thread and hope you will continue to post. It is good to hear from different people in different parts of the world and you, Mary from the US, adagio from Canada and the Brits all help to enlarge our horizons and not have a narrow view of everything.
I do like the peace and quiet of where I live. Exmouth is a small seaside town and Raymond and I retired here nearly fourteen years ago. We had been coming here for very many years to visit one of my younger brothers, who has been in Devon since 1972, some of that in Exeter, where he lectured in French for most of his career at the University of Exeter. He has been in Exmouth since 1980.
The seafront is really lovely and the town quaint!
I am sure that you are an excellent teacher and I would think that your students like and respect you. I know that the three years I spent teaching in Morocco were very enriching and I had wonderful students with a real thirst for knowledge. They were very quick to learn English and just wanted as much education as possible. In this country education is being taken too much for granted and discipline has gone out of the window.
Take care and post soon. Thank you for your PM. I hope my reply explains things.
Fond thoughts.
Sylvia xxxx
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Hello Mary and adagio,
I do hope you have both recovered from all those nine videos. I felt really exhausted after watching them all. I decided not to buy them as I did not think I would want to watch them all again. I would have liked the transcripts to them as I am more of a reader than a watcher of videos. As I think about them I wonder just how much I have retained. I think that with all that is going on the answer for the moment with cancer treatment is probably an integrated system with a mixture of treatment and trying to bring cancer into remission with the least amount of harmful treatment. I am thinking of my friend here, diagnosed this year with hormonal breast cancer and being in remission having had just a lumpectomy and now on Arimidex (anastrazole) an aromatase inhibitor.
I was wondering how you are both getting on.
What do you think about mammography versus thermography?
Would you believe that after all our discussion about mouth and teeth problems, I saw on the front page of one of our newspapers the headline "Fillings rot your teeth"!
There has been a lot of news this week here in the UK about the postcode lottery we have with regard to diagnosis, with lots of parts of the country not diagnosing cancer until stage 3 or 4.
There has also been news about more gene therapy and mutating genes. What do you think about all that?
To Amanda, how are you getting on with your first week back at work?
To everybody, please keep posting if you want the thread to continue. Whatever you have to say will be of interest.
Sending best wishes to everyone.
Sylvia xxxx
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Hi Sylvia and everyone
I'm so happy you're back on the thread. I hope others appear here too.
One of my wishes in life is to see the days that Mohsen- my husband - and I are both retired and get the chance to live in a quiet and calm place like a house in the countryside . The view of the sea which you have can also be terrific.
I love English and teaching it. My students are so cool that except for a few of them who do not have any motivation I always enjoy imparting information .
Lots of love
Hanieh
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Hello Tom,
I have just read your post on the other thread and was interested in what you said about the new guidelines in the NHS for breast cancer treatment.
"In the UK the current NHS guidelines are radiation for tumors 5cm and over, positive lymph nodes and following lumpx, but not MX"
It is good to know that they are cutting down on more drastic treatment when they can. It would be good if they diagnosed earlier everywhere in the UK so that there are fewer women having mastectomies, which is so traumatic.
I do hope all is well with you. Do you celebrate Halloween?
Best wishes,
Sylvia.
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Hello Hanieh,
It was nice to see you back on the thread and I look forward to some more wisdom from such a young woman.
Life goes by so quickly and you will get to retirement soon enough. In the meantime, enjoy every day and do what makes you most happy when you are not working.
I am so glad that you enjoy English and teaching. Students who do not take advantage of education will regret it later in life.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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hello Sylvia and all,
I share your feelings about the "Truth" videos, it was hard to absorb after a couple of days. Probably by design, so we would buy the videos. I did purchase them. I am not that far from my diagnosis, and my plan if I get a recurrence is to get myself to the best place I can that offers conventional and alternative treatments. If that isn't the answer I can refer to the video, also it might help someone I know. There always seems to be someone new being diagnosed, unfortunately. Right now I have a friend whose husband is losing his battle with liver cancer, and a local man on his last legs with colon cancer. Just heard also a local woman passed after battling uterine cancer. All in their 60's, just devastating families everywhere.
We here are starting the long slog toward a Presidential election next year. The candidates are having debates among the inter-party candidates right now leading up to the primary election to choose a candidate from each party. While watching a Republican debate last week, at 1 point they were arguing the policy of the contested Healthcare Policy pushed by Obama and passed by most of Congress. One of the candidates said "if we would try harder to cure the big 4 diseases, being heart disease, cancer, diabetes, and alzheimer's we would eliminate so much cost and misery and we would have plenty of money to go around." I thought that made a lot of sense. I am seeing TV commercials now for a new cancer drug that extends life for 3 months(!), followed by a list of possible side effects that sound worse! I wonder, is that the best we can do??
I don't know anything about thermography, I do know i no longer have much faith in mammography since it did not see my tumor in 2013. But I think it's a good tool for more slow-growing cancers. They are trying to raise the recommended age for screening here, probably all comes back to money.
I am afraid I don't know enough about gene therapy to comment, sounds interesting.
I am still struggling with chronic pain, more than before cancer and chemo. I am beginning to wonder if I have fibromyalgia......I read that it can also be brought on by chemo. The same article said if brought on by chemo it often resolves in 2 to 4 years. I am not going to pursue it medically because the only treatment is the same as neuropathy and I did not like those drugs. I am also having an MRI next week on lumbar spine and tailbone. I had a hard fall on ceramic tile in August and doc wants to have a look.
I need to stop for now will "see" you all soon!
Mary
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Hello Mary,
It was nice to hear from you.
I was interested to know that you had bought the videos. Have you received them? If you have, I was wondering what the transcripts are like. Do you think you will gradually watch them again?
I can understand that, since you are not that far from your diagnosis, that you want to be fully informed so that you can make the best choice for you should the cancer come back.
Like you, I feel that there always seems to be someone new being diagnosed and we all seem to have people around us suffering from all kinds of cancer. It is very frightening as it seems to be getting worse not better. I definitely think it is connected to the way of life of the western world. I have just discovered that a list has been compiled, following a World Health Organisation (WHO) report claiming eating processed meat may contribute to cancer, a full list of 116 things that cause cancer. This list has been compiled following research by the International Agency for Research on Cancer (IARC). I have been looking at it with great interest. You might want to read it. I do not know if the position on the list denotes the greatness of the risk. The link is:
Most of the cancer causing things are ones related mainly to industrial processes and when you read all of them you end up thinking that life carcinogenic!!
In relation to our own cancer what was frightening on this list was that several involved in our treatment are listed and they back up all that condemnation of conventional cancer treatment such as chemotherapy and radiotherapy. Listed are Cyclophosphamide (62), MOPP and other combined chemotherapy including alkylating (85), radionuclides (98 & 99), tamoxifen (108), x-radiation and gamma radiation (116).
Other things on the list include tobacco smoking (1), sunlamps and sunbeds (2), arsenic in drinking water (4), second-hand smoke (13), alcoholic beverages (22), plants containing aristolochic acid (used in Chinese herbal medicine) (32), Chinese-style salted fish (34), processed meat (39), contraceptives – oral – (61), Epstein-Barr virus (65), oestrogen therapy – post menopausal (68), ethanol in alcoholic beverages (69).
Have a look at it and let me know what you think.
I have looked up alkylating agent to refresh my memory and my medical books lists cyclophosphamide and the side effects are, suppress bone marrow, injure lining of stomach, cause hair loss, may decrease fertility, suppress the immune system, may cause leukaemia.
The other cancer drugs that are commonly used such as paclitaxel and docetaxel have the same side effects as the alkylating chemotherapy drugs but do not seem to cause leukaemia.
Paclitaxel and docetaxel can cause nerve damage.
Also on this list of causes are chronic infection with hepatitis B virus (76) and hepatitis C virus (77).
Reading this list you end up thinking that it is impossible to escape this nasty illness and probably others because of indoor and outdoor environment and lots of work in which you are subjected to all sorts of toxins, especially in the making of things and chemical processes.
I was very interested in what you said about the long slog towards a Presidential elaction next year. It is probably true that if the big four diseases, heart disease, cancer, diabetes and Alzheimer's, could be cured by making a bigger effort, much cost and misery could be saved. That is a big IF. I do not think there are magic bullet cures for any of those diseases. The answer is not in pills, it lies in prevention. Remember the saying an ounce of prevention is better than a pound of cure. I think these illnesses are brought about by life style in general which is causing our bodies to malfunction in every way. It is going to be difficult to deal with this and get back to a more simple lifestyle. Lots of the things listed in that research paper seem out of our control.
Whom do you think is going to win the Presidential election in the US?
I learned yesterday the friend of a friend recently died of her breast cancer. She was diagnosed about the same time as me and at the same time as her mother was dying of stage 4 breast cancer. This lady has now died of stage 4. She was triple positive and the cancer had gone to the brain, just like it had with my friend and neighbour here, who died last year and was triple positive. I think this is an aggressive breast cancer due to the HER2+ status and the use of Herceptin. I do not know any people here in my surroundings with breast cancer or in remission who had triple negative except the daughter of a friend and me. We are both over ten years out since diagnosis.
That is about all for this evening. I shall finish my post tomorrow.
Wishing you all the very best.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am just finishing off the post I was doing yesterday.
I was very surprised to learn from your post that there are television commercials for a new cancer drug that extends life for three months and that it is followed by a list of possible side effects that sound worse. I am not surprised that you wonder whether that is the best that the drug companies can do. They are obviously making money from the drugs if they can afford to advertise them on the television. I do not think such advertising would be allowed in the UK, but never say never. I think I would not want that drug for three months extra life and a long lingering three months of a nasty death.
I was appalled and sickened of what my friend told me of the death of his friend's wife from stage 4 breast cancer. She had been suffering for a long time and was put into a hospice. However, after two weeks there she was still alive so they sent her home. With the cancer spread to her brain she was blind, deaf and incontinent. My understanding is that the hospice did not want her back, she had to go into a care home where she died. In this country we seem to treat pets better.
This morning I have just heard more dire news about cancer treatment in this country. Apparently GPs when confronted with patients saying they are feeling ill are examining them and saying there is nothing wrong. Patients are ending up going to A&E and are shocked to be told they have advanced cancer. They are dead within weeks apparently. I can only urge everyone to listen to their own bodies, to take control and not be controlled by their GPs. It is your body, read it and know it and go straight to A&E if you have any doubts. I do not know what it is like where you are in the US.
Like you I have my doubts about mammography. I do fear the dangers of radiation. I asked about thermography but my oncologist told me it was not reliable. The videos would seem to have a different opinion, but we have to remember that while mammogram machines are in the hospitals the staff will want to use them. I am not even sure whether everywhere in the UK has the more modern digital machines. It is the same for radiotherapy. Apparently we do not have enough radiotherapy machines and not the modern proton beam ones which are less damaging. The UK is not doing well at all when it comes to cancer and diagnosis seems to vary throughout the country. It is a bit like a postcode lottery according to the media.
I was sorry to read that you are still struggling with chronic pain and that it is more than before you were diagnosed with cancer and had chemotherapy. I do hope you will be able to get a diagnosis as wondering about what it might be can only be stressful. I have been told that fibromyalgia is very painful. Let us know if you manage to find out what is causing your pain. I suppose it could be from the chemotherapy as it can take years for the side effects of chemotherapy to diminish and I wonder if they ever do. It certainly does not happen with neuropathy and I believe that chemotherapy induced neuropathy is a permanent condition. I do not think the body is ever quite the same after chemotherapy, radiotherapy and perhaps even surgery. I can understand your reluctance to pursue it medically as I think we all know the name of the game – pills to deal with the problem and pills to deal with the side effects of the first pills and so on.
I do hope you have good news from your MRI scan.
In your everyday life, what are you taking in the way of supplements or anything else?
That is all for today. It is Monday morning and there seems to be a problem of fog in the UK which is causing problems at many airports. Christmas is in the air with a lot of the usual junk. There has been much discussion about bringing in a sugar tax on sugary drinks but I do not think it will happen and if it did I do not think it would work. Sugary drinks are only part of the problem. We have wall to wall sugar in the form of chocolates, sweets, biscuits, cakes and processed foods. Sugar is addictive and there must be millions of sugar addicts and obesity is getting worse and worse. There is also much discussion about what is being called "a snoopers charter" which will give more power to the authorities to read people's emails, browsing history and what they are doing on social media. Technology seems to be causing a lot of problems. Recently a 15 year old boy hacked into the accounts of TalkTalk customers.
I am wondering what the week will bring, as we embark on a milder than normal November day.
Thinking of you.
Sylvia xxxx
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Hello everyone,
I picked up a leaflet in one of our natural health stores about vitamin D. these are some of the points.
1. Vitamin D is essential for healthy teeth, bones and an efficient immune system.
2. Symptoms of deficiency are believed to cost the UK taxpayer £29 billion yearly.
3. January, February, March, April, October, November, December, during these seven months of the year the sun rays in the UK are too weak to allow effective vitamin D production.
4. It is our exposure to UVB rays from the sun that help us produce vitamin D. You are advised to expose 20% of your body to the sun for twenty minutes each day.
5. 15+ sunscreen, glass, cloud cover, and clothing block vitamin D production.
6. The UK is one of the cloudiest countries in the industrialised world.
7. Only 10% of our vitamin D comes from food. Oily fish is the best source.
8. We have to remember when exposing our skin to the sun, not to burn.
At the bottom of the pamphlet there is an invitation to check your vitamin D levels by getting a test from www.betteryou.com. The levels of vitamin D are measured NMOL/s. Under 15 is severe deficiency, under 30 is deficiency, under 50 insufficient level, 50 to 100 adequate, 100 to 150 optimum level.
I think all of us on this thread know the importance of having optimum levels of vitamin D, since there is a possible connection between vitamin D, low levels, and breast cancer. Often breast cancer patients are found to have low levels of vitamin D.
according to this pamphlet it states that it is National Vitamin D Awareness week, but there is no date on the pamphlet.
I did read on this pamphlet that vitamin D oral sprays are proven to be significantly better than tablets.
I must admit that I have never tried sprays and have always used Solgar soft gel capsules of which I take 4,000 IU daily.
I do hope the thread will pick up soon, as it has to be more interactive to survive.
To all newly diagnosed patients, be an active participant in your cancer journey. At each stage ask questions and try to have the least aggressive treatment that you can.
Best wishes to everyone.
Sylvia
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