Calling all triple negative breast cancer patients in the UK
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Hello Lindsay,
I can understand that your conference was interesting but intense and I was glad to know that you were there for all of it. I am sure you got a lot out of it. It all sounds really deep and of great interest. Conferences like this are very important.
I do hope you make good progress with your campaign and petition.
I was sorry to read that you have been feeling a little under the weather and I do hope you will soon be feeling better. As I said to adagio, we all need to learn to pace ourselves after what we have all been through and learn when we need to rest up a bit.
I can understand the effect that it has on us when people around us die. I was really upset when my neighbour here died of her breast cancer nearly a year ago now. It was all so sad. Now there is another neighbour about to start on her cancer journey but so far the plan is a lumpectomy and radiotherapy. I do not know if this will change after she has had surgery this week.
I do agree that it is essential for doctors to have good communication skills and not to be cold and matter of fact. I also feel that they have to respect their patients decisions with regard to treatment, not to mention accepting that additional treatments can act as an adjunct to orthodox treatment.
I do hope you have a good time with your family get together. I am sure that Kerry needs all the support that she can get.
I have just received the latest newsletter from Chris Woollams.It has a lot of useful information in it and I need to go through it in more detail. The title of this latest one, sent July 25th, is "Yes, you can hold 'terminal' cancer at bay".
It is divided up as follows:
1. Safe conventional drugs can hold and treat cancer.
2. Old drugs for new – the overall story.
3. Expert US oncologist helps people survive prostate cancer.
4. Curcumin improves cancer drug actions.
5. Apricot kernels.
6. Personal prescriptions.
7. Healing your microbiome is essential if you want to beat cancer.
8. People being rude.
There is a lot of interesting information in all of this and within each section other heading to look up.
It is a miserable day here, one for staying in.
Thinking of you and sending best wishes. Do you ever hear from BernieEllen or Mumtobe (Carol) as I remember they were both from Ireland?
Sylvia xxxx
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Hello Lindsay and everyone,
I have just been going through the Chris Woollams e-mail in more detail and have discovered that the information on apricot kernels is actually a video of Chris Woollams explaining what they are and what they do. I am sure that those of you taking them will find it interesting. This is a five minute talk followed by a45 minute talk by him with lots of information about how cancer treatment has gone over the past ten years. Try to have a look at it and let me know what you think. The link to all of this is:
https://www.youtube.com/watch?v=TXTyzOFu-RQ
https://www.youtube.com/watch?v=jeGZwVoCcz8
I think that Jackpot (Gill), Marymargarethope and Amanda were among those taking apricot kernels and I have been taking them for ten years, before treatment, all through treatment and now.
Thinking of you all.
Sylvia
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Hi Sylvia and everyone
Right now the weather is much better than 2 or three weeks ago as we had some rainy days and again I have started early morning exercise in the park with my friends.People have made some jokes about the recent rain as they say the rain was also sanctioned and now we can see the result of 1+ 5 'successful negotiations.
Sylvia, as you said I have lots of things to say. Long before the advent of Islam and 1000 years before the Arabs buried the newborn girls alive and their cruel slavery when the prophet Mohamad brought a new religion to them the Persian kings had respected all the human' s rights and women had had a very high respected position in society. For more information you can refer to " Cyrus Charter of Human Rights Cylinder". Unfortunately, the Arabs attaking Iran and the weak , incompetent leaders all led to where we are standing now. But a lot of Iranians have not forgotten about their long history and culture and I hope one day we return to that state of glory.
Lots of love
Hanieh
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Hello Hanieh,
I was glad to know that you are back with your friends doing early morning exercises in the park. I liked your joke about the rain being sanctioned and that it is now OK for it to rain!
I was interested in what you said in your information about the history of Persia. I shall certainly look up about the charter.
I was wondering whether you looked up anything about Chris Woollams of Cancer Active. I am sure you would find the video part especially interesting. He is a fantastic lecturer and I was completely absorbed in his 45 minute video. He is such a good communicator. I must find out whether Cancer Active is still publishing their magazine, icon. So much today is electronic.
I do hope that all continues well with you.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I feel the thread is not functioning very well now. We have no one going through treatment to support and that is what the thread is all about. I can only think it means that people are now coping on their own. A thread does have to be two way. Plenty still view but no one posts to comment on any information any more.
The thread will have been going for five years on September 12th and I am wondering whether it is coming to the end of its usefulness.
Thinking of you all.
Sylvia
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Hello Hanieh,
I just wanted to say that I looked up Cyrus Charter of Human Rights Cylinder and read some of the information with great interest. I found a picture of the cylinder and also a chart with the writing that is on it and a translation in English. I also discovered that the cylinder is on view in the British Museum in London and that there is a copy in the United Nations building. It just shows how we can educate ourselves on this thread besides giving cancer support and information.
Best wishes.
Sylvia xxxx
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Hi Sylvia
Thanks a lot for your spending some time taking a look at Cyrus Charter of Human rights cylinder. I hope I have managed to introduce our Persian background to you and all here. In fact if one day our Politicians return to the glory of our great ancestors and the original Persian culture we can expose a better picture of the Iranians to the world as the people who respect all human beings and their rights regardless of what race, culture or religion they have. During the last presidential election people showed what the really wanted from the politicians as they wanted to be in peace with the whole world and support interactions with the world .
About Chris Woollmans of cancer active, I searched for some information and found it very interesting. I will go through it in much more details as soon as I find some free time. Thanks a lot for your kindness to introduce such great links.
Lots of love
Hanieh
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Hi Sylvia and everyone
Because of the injections of the Dipherline and the imposed early menopause I think I'm in the process of gaining weight despite all my efforts to exercise more and cutting on what I eat.
Do you have any idea as what I can do to stop this process as getting fat is the thing I can never get on with.
Thanks a lot in advance
Hanieh
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Hi Sylvia
Can the book The Rainbow Diet be downloaded on line? When I searched it I found lots of information about it but I wonder how I can have it since lots of our sites are cruelly filtered.
This book seems really valuable and I have this feeling that if I get an access to it and manage to translate it into Persian I will help lots of cancer patients in my country.
Thanks a lot for everything
Hanieh
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Hello Hanieh
The website below claims
we can dispatch to anywhere in the world.
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Hi peterandliz
Thanks a lot for your response. I will try it.
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Hello Hanieh
Thank you for your posts. It is always a pleasure to read them and I do like to keep educating myself. It would be nice if we could get politicians to carry out the wishes of the people they are supposed to represent.
I am glad that you have been reading some of the information that Chris Woollams of Cancer Active puts on his website. I have been following him for ten years and always look forward to his e-mails. He does know what he is talking about. You can find everything you need to know about cancer on his Cancer Active site and he now has Health Watch for information on all kinds of illnesses. I do subscribe to the Cancer Active magazine but I have not had one for a long time, so I am going to phone tomorrow to find out whether it is still being produced. He has dedicated himself to cancer ever since his daughter Catherine died as a young woman from brain cancer. I have huge respect for this man. He does do personal prescriptions via Skype but I do not know whether that is available in your country.
It is my pleasure to share any information that I find. On this thread a long time ago we said that knowledge was power and I firmly believe that.
He has written quite a few books but I think you have to order them at a certain address or on line. I do not think you can download them. I am sure you can find a list of them on his website. The Rainbow Diet is very famous but he has also written Everything you need to know to beat cancer. Another book is Oestrogen, the enemy in our midst.
It must be very distressing for you to be putting on weight because of the Dipherline. I am putting a link for you to look this drug up again because it says that the drug is used to treat prostate cancer that has spread and that it MUST NOT be given to women or children. It looks as though for you it has been used to bring about an early menopause. Is this menopause to be temporary or permanent and why is it being done?
http://www.news-medical.net/drugs/Diphereline.aspx
I am not a doctor but I know that older menopausal women tend to put on weight and I think it is something to do with diminished oestrogen. I also know women that have had hormonal breast cancer and are put on tamoxifen tend to put on weight. As I have said before, I would try to get more information.
I am sorry that I cannot be of more help, but I have just never heard of anyone on the threads taking Dipherline.
I do hope you succeed in ordering The Rainbow Diet. In the meantime, just remember to eat a diet of brightly coloured fruits and vegetables – carrots, sweet potatoes, tomatoes, peppers of all colours, broccoli, cabbage, spinach, Brussels sprouts, cherries, black currants, blueberries, blackberries, strawberries, red and black grapes, oranges, kiwis and so on.
Take care.
Love.
Sylvia xxxx
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Hello again Hanieh
This is a link to the manufacturer's information about Dipherline.
Love.
Sylvia xxxx
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Hi Sylvia
Thanks a lot for your link. My next injection will be next month and by then I'll have got second and third opinions from my surgeon and another oncologist . I hope I manage to come to a reasonable conclusion as right now it's a really heavy burden on me.
Regarding that book, I asked my cousin who lives in London to buy it for me. He works for the Facebook and comes to Iran regularly to visit family and friends. Maybe I ask him to buy me all his books .Again thank you so much for referring me to such a great site.
Lots of love
Hanieh
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Hi Sylvia and everyone
Now we're in the mountains of Tehran going to get on cable cars. I will send you more photos.
Love
Hanieh
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Hello Hanieh,
Thank you for posts and all the lovely photographs. You and your daughter look so alike, as we say in English, you are like two peas in a pod. The three of you look like a nice happy family. I hope you are enjoying your time in the mountains.
I do remember going on cable cars when I lived in Ottawa, Ontario, Canada and went for a holiday in British Columbia, right over the other side of Canada. We flew there and went touring. We went on cable cars over the Rocky Mountains in Vancouver and Whistler. My husband also walked across the Capilano suspension bridge in British Columbia. I did not go across that bridge, as I found it too frightening.
I do hope you will get these injections sorted out with the second opinions.
As for the books, your cousin may have to order them from Cancer Active. They are not available in ordinary bookshops.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was just wondering whether any of you saw the programme Trust Me I'm a Doctor on the television in the UK this past week. It was all about treating cancer through virotherapy. Apparently they are now using this with a degree of success to treat certain cancers, such as melanoma and head and neck cancers. Genes of a virus are manipulated and then the virus chases the cancer cells, makes them visible to the immune system and then the immune system destroys them. This is just my simplified explanation. 70% of head and neck cancer patients were still cancer free after five years. Virotherapy is being particularly successful with melanoma skin cancer.
During the same programme it was mentioned that drinking alcohol increases risk of cancer by 10% and that is just for one glass.
Wishing everyone a good weekend.
Sylvia
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Hi Sylvia
I'm really happy for you to have the chance to travel to such great places. Travelling has always been my greatest pleasure in life and now after this disease I m more eager to travel as far as I can. In fact nothing can stop me from enjoying every minute of my life as I don't know what may happen in future.
Sylvia would you please post some pictures of your travels.
Lots of love
Hanieh
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Hi Sylvia and everyone
Thankfully I had a very nice day in the mountains and the reason I wanted to share it through all these photos was to remind all my dear friends here that we can move on beyond the harsh experience of cancer by enjoying the simplest things in life without any need to look forward to big, unexpected events to change our states of mind. I can never deny the fear that I always have with me about cancer but I try not to let it affect the happiness that I can have with my family and friends.
Lots of love
Hanieh
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Hi Sylvia
I have dropped by to catch up on the posts. I hope all is well and that you are having a better summer than we are having. I don't think that I remember such poor summer weather although I am sure that I probably have experienced worse. Last Sunday the dog and I had severe cabin fever.
I still haven't heard back from the NI charity commission concerning my registration of the charity. :-(
Michael
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Hello Hanieh,
Thank you for your posts.
Raymond and I are not really great travellers compared to travellers today who go to very far flung and exotic countries as if they are just popping up the road! I first went to France as a thirteen year-old on a school trip. We went to Paris. As part of my BA Hons French degree I spent a year teaching in France and then, after graduating, I spent five years in France teaching and three years in Morocco. Later I spent seventeen years in Canada. I have been to Spain, Portugal, Germany, Holland and the Scandinavian countries, but that was many years ago. When Raymond and I were living in Canada we did visit a bit of the US. We were not ones for taking photographs (no smart phones or digital cameras then) and when we came back home from Canada we got rid of everything, so I do not have any photographs to post.
The photographs of the flowers in our grounds Raymond took as I thought they would cheer people up on here.
I am sure that your posts showing your travels and you enjoying life with friends and family will show people on here that there is a life after breast cancer treatment and that you must get on with your life, each day fully, and put cancer in a little corner. We all know the anxiety that this disease can cause but we must try to keep it at bay as much as possible.
I have been reading some of the new threads created and I am very concerned about the number of young American women posting to say that they have just been diagnosed with breast cancer and that it is TNBC. I find it strange that the receptor status seems to take precedence over the kind of breast cancer that they have, as I think the kind i.e. IDC, DCIS or some of the less common ones is probably just as important.
One of my neighbours here has just had surgery for a lumpectomy and talking to her has made me realise that things do not seem to have changed much, since I was diagnosed and that you can probably still go through treatment here without being told very much, unless you ask questions.
I phoned her just before she was due to go into hospital to make sure she was alright and she said she was fine and seemed not to have a care in the world. She had the surgery on Wednesday and was allowed out the next day with the drains in and a nurse visiting at home to deal with them. She is eating with a good appetite and again seems unconcerned. I was talking to her sister-in-law who told me she seemed fine and cheerful. It was obvious from that conversation that she knew nothing about the kind of cancer she had or receptor status. The only thing she had been told was that she may not even have radiotherapy, and she had already been told there would be no chemotherapy. In a couple of weeks she will see the oncologist for the result of the surgery and status of lymph nodes removed.
It makes me wonder whether it is easier to go through your treatment in ignorance.
This would not have worked for me. I knew quite a bit about breast cancer before diagnosis. As soon as I was diagnosed I read The Cancer Directory by Dr Rosie Daniels from cover to cover and typed out all my questions and sent them to my consultant, so that she could have all the answers ready for me at my next appointment. I always wanted to be one step ahead and in charge of what was going to happen to my body. I guess we are all different.
I found the following address connected to Cancer Active which might be where you can order books.
Unit 6
Sunfield Business Park
Finchampstead
Wokingham
Berkshire
RG40 4QT.
I have the following phone number 0203 186 1006. I phoned this to find out what was happening about the Cancer Active Magazine Icon. I had to leave a message and am now waiting for an answer.
I also sent an e-mail to Chris Woollams asking what he knew about Diphereline. I looked this up again and it said the generic name was triptorelin embonate. Again, it was listed as an anti-cancer drug for prostate cancer. I shall let you know if I receive a response from Chris Woollams.
Finally, you and the other women might like the following link if you want to investigate further the programme I saw on television Trust Me I am a Doctor about virotherapy and cancer treatment. The link is bbc.co,uk/trustme.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
It was nice to hear from you and I am wondering where you have dropped by from. Have you been to one of these far flung exotic places?
All is well here in little old Exmouth and yesterday the beach was 'swarming' with people. I have never known it so busy and it was more cosmopolitan than usual. Am I allowed to say there was a 'swarm' of people? Have you heard all the fuss over the use of this word?
I have been following the weather forecast for the UK so I know that you have been getting a lot of rain in NI and I have been wishing they would send it to the SW of England. It has been so dry here. We did have two days of rain a week ago, but we need some more to turn our grass green. Our relative who was working in NI has changed jobs and is now working in Chelmsford. I think he got too homesick in NI.
I do hope you and your dog have now recovered from your severe cabin fever. It is an awful affliction and one from which we suffered quite a bit during the Canadian winters.
I was sorry to read that you still have not heard back from the NI charity commission concerning registration of the charity in Janette's memory. It is not good enough and must be upsetting. It is very frustrating dealing with bureaucracy.
I am still following the Labour leadership race. I heard this morning on the radio that Jeremy Corbyn is leading the race from the constituencies but of course these do not count in the real vote. The knives are really out for him. He is such a genuine person with a real vision but with the transferable vote I do not think he can win, unless he gets 50% on the first vote. Liz Kendal is way behind in fourth place with backing from the Blaritites, that was the kiss of death. I saw that Tom Watson is leading the deputy leader race in the constituencies. I am also backing him but I do not like the fact he abstained about the welfare bill, but then all the deputy leader candidates did.
I do hope our thread will get back to normal after the summer. For me normal means when the schools go back.
It is feeling very autumnal here in Exmouth today.
Best wishes
Sylvia
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