Calling all triple negative breast cancer patients in the UK
Comments
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Hello linali,
I just wanted to let you know that I did watch The Vote on election night. I thought it was so deep and funny. The acting was superb.
Fond thoughts.
Sylvia xxxx
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Hello linali,
I just wanted to let you know that I did watch The Vote on election night. I thought it was very deep and very funny. The acting was superb.
Fond thoughts.
Sylvia xxxx
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Hi to all,
I have been up a while because the cat was at the window. She is always disturbed when Leighanna is home as she stays up till the early hours.
Leighanna is very concerned about the referendum here on same sex marriage. She already feels marginalised and feels threatened by all the discussions about gay and transgender people and their roles as parents.
Whether you agree or disagree it is sad to see your child..... Adult though she is.... feel so isolated and afraid of how society views them and their right to live an equal life. I suppose that all her worries are exacerbated by the Aspergers.
As for protecting or guiding our grown up children well that reminds me of one of many many conversations with Kerry since our darling Max was born. She asked me how would I manage now with Leighanna as she is and now Max with Downs Syndrome. Also how would she cope with the worry of Maxs future and all that would bring.
Maybe my answer was too glib_ but I said that you just love them and that all children are handfuls for grandparents . And that regardless of ability or disability that parents worry continually, get frustrated and face heartbreak over their children...... That is what a Mum is. But then any achievement especially in Maxs case will mean even more.
I am not sure if it helped but sometimes it has been so hard to find the right words to comfort and give her the strength that she needs.
Max has to be fitted with hearing aids as he has permanent hearing loss in both ears. One better than the other. I cannot imagine how they will fit a tiny baby.
My two boys will be christened together on Saturday in Wexford.
I am trying to think of things that I can preprepare for a buffet. We will be staying in an hotel and so I wont have access to Kerry's kitchen apart from a couple of hours on Saturday. I have ordered a cake and a large quiche and a friend from the centre has kindly offered to make a large bowl of her beetroot, feta and lentil salad.I have a side of smoked salmon in the freezer too and may make it into a pâté.
Sylvia,
The flowers and shrubs are beautiful and flourishing. We are exposed to the Atlantic winds and so lots of our plants are sheltered but then they are also in semi shade.
Hanieh ,
I hope that you made it to the north and the jungle. The scenery must be fabulous.
How magnificent is nature. For my last counselling session Joanne took me a walk by the Atlantic. She felt that I needed support in finding all the spiritual belief and awareness that I felt that I had lost since Max was born. The sea was wild and the wind so strong but above it all I could hear the small birds singing. How strong and vocal can one small bird be. How different I felt on the walk back.
Damian has an early gp appointment today because I have kindly passed on my chest infection. We need to be well for the christening.
I cannot see any one who had the charisma or character to be Labour leader.Perhaps because I was brought up knowing Barbara Castle and Bessie Braddock.
Sorry for the long post which just seems about me.
Amanda great that the surgery is over. I hope that you are healing well.
Thoughts to all in treatment.x
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Morning everyone
Sylvia thank you for the link. I managed to order some bitter apricot kernel from that website xx
Lindsay big hug for leighanna. I despise any form of discrimination. I'm not gay or transgender myself but do have gay friends also friends of different religion and colour. It's very tough to see our children hurting for what evere reason so big hug for you too. Xx
I have a bit of positive news my bone scan was clear no problems. So will see the onc next week with regards the pain, maybe it's aches from the chemo.
Wishing you all a lovely day
Amanda
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Hi Amanda
Great news that your bone scan was clear. I have had lots of chemo for my Non Hodgkins Lymphoma and have suffered with joint pain, especially in the wrist on the arm I always offer for treatment. A few months ago I started taking one ibuprofen tablet a day and that has worked wonders. Maybe it is worth a try.
I am in Ibiza at the moment and the heart is fearsome. I never used to duet from heat intolerance but I certainly do now. I wonder if that is caused by chemo. I fly back to Dublin tomorrow and I can see that I will be shivering 😨
Michael
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Hi Amanda,
So glad to hear that scan clear. I also had one 2 years after finishing treatment it was a scary time .
I had pain in my shoulder but all was clear. I have a small tear in my shoulder that I now go to a pain specialist for . Amazingly when I did get the all clear the pain seemed more manageable.
Thank you so much for your support for Leighanna. Sometimes as a parent of a transgender adult with Aspergers it can be very isolating too. It means a lot to me when someone accepts Leighanna for the person that she is.
Hope that you get the pains sorted out.
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Hello linali (Lindsay),
I do understand your concerns about Leighanna. It must be very difficult for you. When is the referendum on same sex marriage in Ireland. Here in England there was no referendum, just a vote in parliament, which passed.
I do hope that in time Kerry will adjust to her situation. I think she just has to find all the help she can get and feel positive about the future. I can understand how difficult the situation is and sometimes situations are so difficult and complicated that we cannot find the right words.
I do hope that once baby Max has got his hearing aids fitted, it will help him to progress as he hears sounds. I am sure that Oskar is going to help in this progress, because he will have the spontaneity of a young child.
I shall be thinking of you on Saturday when you have your christening. Your christening buffet sounds delicious and I am sure all will go well.
Thank you for your kind words about the shrubs and flowers. There is a great variety because of the large grounds that surround the apartment complex where I live.
It sounds as though the walk you had of great benefit to you. I agree about the strong sound a small bird can make. Whenever I am gardening a small robin always comes to sit by me and sings strongly. I think it is always the same robin as they are very territorial. I am amazed at how tame it is. If I go to a different part of the grounds, it will be there almost immediately.
I hope Damian will be fine for tomorrow.
I heartily agree with you about a new Labour leader. I doubt if we shall ever again see women like Barbara Castle and Bessie Braddock. I have been watching those putting themselves forward with despair. So far we have Andy Burnham, Yvette Cooper, Chukka Umunna, Mary Creagh, Liz Kendal and possibly Tristram Hunt. I fear we are in a contest of the egos. Labour should be concentrating on the fact that they lost election and looking into what the party really stands for. I feel that Tony Blair and Gordon Brown took the party down the wrong path and betrayed Clement Attlee, Aneurin Bevan and the spirit of 1945.
That is about all for now. Let us know how everything goes.
Fond thoughts.
Sylvia xxxx
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Hello Amanda,
I just wanted to say that I was so glad to know that the bone scan was clear. Let me know how you get on with the bitter apricot kernels.
Thinking of you,
Sylvia xxxx.
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hi Sylvia
The apricot kernels arrived today . I was expecting them to tasted really nasty . They are not what I'd call delicious lol but better than I expected. To me they taste a bit like marzipan . I only dared to have a couple as it said on the packet no more than two.
I also got some vitaminD3 supplements does anyone else take these and find them beneficial?
Hope you are all having a good day xxxx
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Amanda - I take 4000 units of vitamin D3 every day. I like to keep my D levels at the maximum level - so I get my blood checked about every 9 months to see what it is. All the reading I have done would suggest keeping vitamin D levels close to the upper limit. I also take 10 apricot kernels each day. There is so many theories out there as to what is beneficial - we each have to pick a few that appeal to us and give them a try
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Hello Michael,
I was interested to know that you were in Ibiza. It seems to be a very popular place. What is the big attraction there, apart from the sun? I would not be surprised that chemotherapy affects one's ability to tolerate heat. It completely upsets the body and I think we never properly recover. I cannot bear the heat at all. It could be that we tolerate it better as youngsters.
I was interested in what you said to Amanda about your joint pain. I would think that is due to all the chemotherapy you have had. Chemotherapy and radiotherapy affect the bones. Ibuprofen, both tablets and gel, do seem to give rapid relief.
This past week I was talking to a friend of mine whose husband has non-Hodgkins lymphoma and I was asking how he was getting on. He has had lymphoma for eleven years and was diagnosed at forty. I asked if he was on treatment all the time or whether he was free from it for long lengths of time. She told me that with non-Hodgkins lymphoma you are diagnosed as aggressive or indolent and that the aggressive one is easier to treat. Her husband has the indolent one, and if I understood correctly, is never in remission. He goes regularly to the hospital for blood check ups, is still on chemotherapy treatment and often has problems with cancer markers and low white blood cells. She says that they try to carry on life normally but that by 3 pm on any day he is very tired and will fall asleep. He is unable to work.
This friend had preventive surgery for breast cancer because three close relatives had died of it at forty. The whole close family has now been tested for the BRCA genes and most of them have it, but not all. Funnily enough, of the two sisters and three brothers, only the youngest brother does not have it, and strangely he has a different blood group.
What do you think of the 92 year old woman in Bristol who killed herself because she had lost faith in human beings. Did you read the story? I saw that she had recently had breast cancer as well.
I am still following the political situation with interest and I was having another look at all the parties in Northern Ireland. According to the internet there are eight, which surprised me. It said they can be divided into three groups. I was interested to read that there was a Northern Ireland's Women Coalition and that it used to be part of Sinn Fein. I saw there are four parties with Unionist in the name.
I hope you are safely back home. Your dog will be glad to see you.
Very best wishes.
Sylvia
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Hello Amanda,
I was glad to know that your bitter apricot kernels arrived. I cannot say that I can taste marzipan but I do love the bitter taste. I have just eaten five while doing the thread and can only detect the bitter taste. I do not take any notice of what they say about eating only two. As I said, it was Dr Hembry who made them known to me and on the various nutrition sheets she gave me it said to take 30 a day for active cancer. I have been taking 15 to 20 a day for ten years now and I shall never stop.
I was glad to know that you are taking vitamin D3 supplements. I would think that most women on these threads know about the importance of taking vitamin D in optimum amounts. Like adagio, I am taking 4000 IU daily and I take the soft gel ones that I get on line and they are the Solgar brand. I take them in the morning with a Solgar calcium supplement entitled Bone Support. They are a complete supplement containing vitamins and minerals that you need to absorb the calcium.
Have a good weekend and enjoy whatever you do.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
You are right about all the theories that are out there about various products etc. I think that some years ago orthodox medicine was against everything that was not orthodox but gradually, with all the information that is available, orthodox medicine is more accepting of an integrated system of treating cancer, and admitting that complementary and alternative have a role to play. I believe this to be true, so I make my own choices on what I take and will not take. I have chosen to take bitter apricot kernels and green tea. I take a low dose aspirin from time to time, as well as a teaspoon of bicarbonate of soda dissolved in water. I know a lot of women on the threads are taking the anti-diabetic pill, metformin, as a cancer preventive, but it is something I do not wish to take.
Last week with the friend I mentioned and another friend we had a good talk about all of this. I told them that if orthodox medicine sent me away saying there was nothing they could do for me, I would not give up and would try anything I could. I would probably try CV247, about which I have read a lot, and I understand is being prescribed by some as a treatment for cancer. I read about it recently on http://alternativecancerresearch.org/.
Keep well.
Fond thoughts.
Sylvia xxxx
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Hello Mary mn8,
I was just wondering how you are over there in the U S. I do hope things are slowly improving for you.
Fond thoughts,
Sylvia xxxx.
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I rarely post but I read this thread occaaionally. I have TNBC but metastatic so in a different place to most of you. However, a friend gave me the Royal Marsden cookbook and I thought you might find it interesting. There is a v good advice section. You can get it on Amazon
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Hello Bosco19,
Thank you for posting here and for giving the details about obtaining the Royal Marsden Cancer Cookbook. I am sure that all those looking or posting on this thread will be interested in it. Over the years we have had many discussions about healthy eating, what to eat and drink, what to avoid, so-called super foods, etc. I shall certainly order this book from Amazon.
Another very good book is the Rainbow Diet, newly updated, by Chris Woollams of Cancer Active.
I was pleased to know that you read our thread occasionally.
It goes without saying that I was sorry to read that you have TNBC metastatic breast cancer. You are quite welcome to stay with us and talk about anything you like. It is good therapy.
I have been looking at your details and saw that your cancer journey began in January 2013 and I can see that you have been through a lot.
Looking back at your treatment in 2013, I noticed that you had a lot of chemotherapy, more than is standard and I was wondering why. I do not know your age, but I was wondering whether you are young and were tested for the faulty BRCA1 & 2 genes.
I am sure our hearts go out to you because we have all experienced this first cancer journey and know how challenging metastatic breast cancer must be, and we all know that we may have to face that journey.
How are you coping with all the additional chemotherapy you have had in 2014 and 2015, not to mention all the radiotherapy. Are you still having treatment or are you having a rest?
Did you have your treatment at the Royal Marsden?
I know a lovely lady, Carolben, from South Africa, who posted on this thread throughout her treatment for primary breast cancer, and I grew to admire her very much. She was doing everything right and I was so upset when she posted to say her cancer had spread. She still pops in from time to time and I have posted to her on Brain Mets Sisters. I know she is very tired but last time we were in touch she was still managing to swim a little. Carolben did everything right and yet her cancer spread, so none of us can take anything for granted.
Thinking of you and sending love and best wishes from all of us on this thread.
Sylvia xxxx
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Hi Sylvia
Ibiza is a very beautiful island and it has an hippy atmosphere.I would normally go in April when the weather is perfect and it is quite. I wouldn't like to be there in the summer.
Your friends description of Non Hodgkins Lymphoma is absolutely right apart from the high grade being harder to treat which I wouldn't quite agree with. Normally high grade would require treatment straight away and 50% of patients will be cured after the first course of treatment with those who relapse being treated with a stem cell transplant which seems to have a high success rate. The low grade lymphomas usually come back repeatedly, although I do know of one person who seems to have been cured as it is 13 years since he had a transplant using an experimental protocol.
You were asking about the political parties in NI and to be truthful I don't know much about them. I don't engage with local politics as apart from the Alliance (they would be the Guardian reading Hampsted types of NI) they all seem incredibly narrow minded and bigoted. There was one loyalist MP called David Irvine whom I respected but unfortunately he died several years ago.
I hadn't heard of the lady in Bristol who killed herself, it must have been while I was away?
There have been a couple of things on the Irish media about the UK that you may find interesting. One is an interview with Neil Kinnock (search RTE radio 1, Neill Kinnock interview) and a short film by the economist David McWilliams (search David McWilliams The Balkanisation of the UK).
Back to cleaning up the house
Michael
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Hello Michael,
Thank you for your post. with How are you managing with your lymphoma these days?
It was strange that you should have mentioned David McWilliams in your post, because, after I had read it, I put the television on to look at the hourly news on RT with Bill Dodd, and it was all about the Balkanisation of the UK and he interviewed David McWilliams. It was really interesting. I do think that Scotland will separate in the not so distant future. I have always thought that England has acted like an imperialist towards the rest of the UK. I can understand this dislike of the powers that be at Westminster and the arrogance with which they act. I also think that Wales and Scotland are much more democratic than England. As for Northern Ireland, I cannot understand how a part of Ireland can be cut off from the rest of Ireland and said to be part of the UK. I think there will be interesting times ahead.
Have you read about the big petition that is building in the north of England, 41,000 signatures as of yesterday, signing up for 'Take us with you, Scotland'? The northern part of England do not like the Westminster bubble either. Of the actual possible vote, the Conservatives got only 24%. That is hardly democratic. I think we are going to have to get rid of the first past the post.
I have been looking again at the Northern Irish parliament on the Parliamentary channel and it is much more business-like and modern than the archaic silly way of Westminster. The Scottish and Welsh parliaments are more business-like and modern as well.
I shall try to listen to the interview with Neil Kinnock, who is not one of my favourite people.
I am not sure where the Labour party is going in all of this. The people up for the leadership have not got what it takes and I think the party is heading back to Blairism. Instead of gong on about the leader, I think they should be having a good think about what they stand for.
Here in Exmouth, we woke up to rain but it is well needed. I think we are getting in May the showers we should have had in April. I have been very busy here with work running the complex. Raymond and I are thinking of going over to Sidmouth for a bit of relaxation if the rain eases.
I have noticed on some of the other threads that there seems to be a lot of excitement about trials and possible vaccines, but I have not heard much of any of that in this country. I know that Marymargarethope is on a trial for a new drug and I hope she will let us know how she gets on. I think the best thing we can all do is just try to take care of ourselves, be active, eat healthily, avoid negative stress, but not get obsessive and try to live as normally as possible.
Take care.
Sylvia
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Hello Michael,
I have just listened to the interview with Neil Kinnock. I found it interesting, especially his views on the general election, and the Miliband brothers. After that it got very long winded and was very much the Neil Kinnock show.
As far as the election goes, I remain convinced that the opinion polls were manipulated and the constant harping on about the close race was done to instil fear about a Labour victory and to bring out the Conservative vote. The same tactic was used to instil fear about a Yes vote in the Scottish referendum.
As for the Miliband brothers, I think the Tory Murdoch press was out to get Ed Miliband because he had dared to stand up to Rupert Murdoch. I do not think Ed had the common touch, but I thought he ran a good campaign but was the victim of character assassination and abuse. He won the Labour leadership against his brother. I certainly do not think David Miliband would have been a better leader than Ed. If we are talking 'geek', then there is not much difference between the two. I think we have a largely gutter press. It is a bit much that it is so low it tries to convince people to judge a person on how they eat a bacon sandwich.
As for Neil Kinnock, despite his working class roots, I do not think he would have made a good prime minister. I think that when Tony Blair and the Blairites took hold of Labour, it ceased to be the democratic socialist party that Labour is supposed to be. I have not a clue where it is going now. I think that the south of England is a Tory fiefdom now. One of the worst things that Blair did was to introduce student fees.
I do not think that anyone from Labour should go into the archaic House of Lords. It should be abolished, along with these awful titles that make people think that they are better than others.
On a different matter, there is a really interesting article in the latest New Scientist (16 May 2015). On the front page there is the following: "Our Daily Meds – We're popping more pills than ever. Are they really keeping us healthy?" The first article inside is "Too much of a good thing? The quest for wellness will elude us until we define it". The cover story is "Should You Swallow It?" and underneath "Many of us pop at least one pill a day. But all this medicine could be making you sick. Chloe Lambert reports". It goes on to talk about, amongst other thisngs: Statins, Testosterone (TRT), HRT, The Pill, Aspirin, Anticoagulants, ACE Inhibitors, Anti-depressants. It is very interesting about how harmful to people cocktails of these drugs can be.
I found it all very interesting, especially as there is a link apparently between the Pill and Breast Cancer, and I do wonder about all these pills and cancer in general. They are all foreign to our bodies.
There is a fascinating article entitled "'Heavy' fat – the secret to eternal youth?". Underneath it "A pill that strengthens our cells' defences could be a cure for degenerative diseases – and might even slow down ageing".
That is all for now. It has just been pouring down with rain so I am not sure whether we are going to get to Sidmouth.
Best wishes.
Sylvia.
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Hello dear Sylvia and all,
I have been absent from here quite a bit, have been trying to keep up with posts but not completely succeeding. I am glad to see that Linali and Adagio and Michael are back and busy with their lives. Ibiza sounds glamorous! Welcome to Bosco, Sylvia was right to say that you are in a spot that any of us can be in, and I wish you the very best, and if I can help in any way I will.
I saw an orthopedic doc today, I wanted him to look at an MRI and a CT scan that was the third in a series that the oncologist ordered. They were concerned that a spot on my spine was cancerous. After the third test, they decided it was a subchondrial cyst, non-cancerous. After all that, I wanted another doc to look at it. I went to the doc that did my husband's knee surgery in 2013. The knee surgery dldn't go well, and by the time the problems were resolved we all had become pretty close. The doc told me he agreed with the diagnosis of cyst, but my lower back is in such bad shape that he said I am one of the few people he thinks would benefit from spine surgery. I told him I am not even sure yet I will survive this cancer, not quite ready for a major surgery! He understands, his wife had breast cancer. The truth is, I have been living with my lower back for quite a while, it doesn't bother me as much as my shoulder does. He ordered an MRI on my shoulder (rotator cuff). He said it's possible he could do an orthoscopic surgery on that and help me out with minimal recovery time. We will see.
Other than that, I have been concentrating on getting better and stronger. I am back to my pre-diagnosis weight, and I try to work out at the gym 3 times a week, doing the routine my therapist recommended. There is much to do with my husband's family business, and his children, and my immediate family, and it seems I am a very busy person. It's a different busy since my husband is no longer here. The nights were difficult at first, but my dear sis-in-law helped me so much; her husband died 3 years ago and she understands well how it feels to be alone at night when you are not used to it. Today I went by the funeral home and signed papers to get the military memorial on his gravesite, yesterday I ordered his headstone. Which will also be mine!
I am not up to par on British politics, I did notice that the royal family has a new baby. Are the royals at all influential in politics? I was discussing our politics while power-walking at the gym today with a man I know. We have differing opinions and I finally asked if we could change the subject, not getting anywhere! He agreed and we went back to the efficiency of solar power. Oh well.
We are having a cool late spring, but the flowering shrubs and trees have been very beautiful this year. I enjoyed the pictures you posted of your grounds.
Sylvia, I wish you the very best, and Raymond too. I try to remember to eat my bitter apricots, I do have to eat a strawberry after or something, they don't taste too good!
Wishing everyone good things,
Love, Mary
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Hi Sylvia and everyone, I have been quite busy lately what with my daughter needing a colonoscopy for a long standing bowel problem. This isn't the daughter with the awful boyfriend btw!!
I had my CT abdo and pelvis with contrast yesterday for my ongoing kidney type pains. I am terrified they will find mets, but pleased they are looking into it as the ongoing nagging discomfort which has lasted 16 months is so depressing!
Love your garden Sylvia! Up here in the Wirral my flowers are not in flower very much, too blooming(!) cold.
Have you all been following the awful story about the nurse who has killed all those poor people by contaminating their drips in hospital? So scary. I was a nurse many years ago and so much of what they do is on trust. Its good they are putting in more safeguards.
Love to you all
Sue xx
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Hello maryna8 (Mary),
Thank you for your post. It was nice to hear from you and I was glad to know you are trying to keep up with the posts.
It is good to know that the spot on your spine has been confirmed as a cyst.
I was concerned to read that the orthopaedic doctor you saw has recommended spine surgery. If that were me I would give it careful thought. I know several people who were told they would benefit from surgery, went through hell with the results of it, and ended up worse off than before. I can understand that you told the doctor you were not ready for major surgery. I was glad to know that he understood your concerns, especially with reference to breast cancer. Let us know what happens about your shoulder.
It sounds as though you are making a great effort to keep yourself well. Congratulations on getting back to your pre-diagnosis weight and going to the gym three times a week. It sounds as though you are one very busy lady.
Do you get much news about the UK in America? We get a lot of news about America over here. There was a lot of fuss here about a new baby in the "royal" family, but I am not at all interested in that. I cannot believe that in the 21st century we still have an hereditary family in our political system. I believe in everything being based on elections. The Queen does not have any real powers, but we have a lot of silly ceremonial practise which will be happening next week with the State Opening of Parliament after the latest General Election. Out will come the coach, the crown and all the rest, as if we were still in the middle ages. She will read, in the House of Lords, the speech containing the new government's programme. Inside the Commons there will be the silly ceremony of a man called the Black Rod, banging on the doors of the Commons and shouting that the Queen summons them to the House of Lords. Most of the MPs will then trot out to hear the speech. There is one MP on the Labour benches who always refuses to go. This man is Dennis Skinner, now 83, whom I really admire. I recently read his autobiography with great interest. He has remained true to his principles during his 45 years in parliament.
I had to chuckle about your discussing politics while power walking at the gym, with a man you know. It s said we should never discuss politics or religion, but it is unavoidable. How did you get on discussing solar power? That can be controversial as well!!!
I was glad to know you enjoyed the pictures I posted of our grounds. The weather in England is very changeable and one day is rarely like the other. At the moment we are getting the rain we should have had in April and May has been cooler than April. The English talk a lot and moan a lot about the weather. It seems whatever the day brings they are not happy. It is either too dry, too wet, too hot, too cold, too windy. I do not think they complain when it is too calm.
I was glad to know you are eating the bitter apricots. As you know, I really like them and have just had some with a mug of green tea.
Thank you for your kind wishes for Raymond and me. We wish you the same.
Keep up the good work.
Fond thoughts.
Sylvia. xxxx
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Hello Sue,
It was nice to hear from you. I can understand that you are kept busy with your daughters. We hear the same from adagio and linali with their families. I do hope all will go well with both your daughters.
I do hope you will get good results from your CT scan and good news. I do hope you will be able to get the kidney type pains resolved. I do understand your anxiety about finding mets, as I think it is something we shall all probably never be free from. Sixteen months is a long time to put up with ongoing nagging discomfort.
Thank you for the kind words about the grounds in our apartment complex. I think that colourful gardens can give us a lot of happiness. Your flowers will bloom soon I am sure and they will bring you great pleasure. At least you are not as cold as Scotland. I lived in Leeds for three years so I know how cold it was up there. Here in Exmouth, it is especially mild for the UK, but it does not feel like that at the moment. It is 14C and cloudy today. I hope it will warm up so that I can do a bit of gardening. I feel so much better when I am out in the air.
I have certainly been following the terrible story about the nurse who has killed all those people in hospital by contaminating their saline drips with insulin. I cannot understand how he got away with it for such a long time. Let us hope the safeguards work. I think patients and their families have to be very diligent in hospitals and keep an eye on everything.
I was appalled as I listened to the news on Radio 4 this morning. It was again about the NHS and the appalling end-of-life treatment that patients are getting. One was dying of lung cancer and the family only read about it by reading details at the end of the bed. Another was about repeated attempts to put in an IV in a dying patient. There has to be death with dignity.
I think nurses on the whole do their very best but there are not enough of them to give proper care. I think the situation is only going to get worse. We do not have enough doctors or nurses, hospitals are too big and we do not have enough doctors or consultants. I dread to think what is going to happen over the next five years.
Keep well, Sue, and take care.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was just wondering whether any of you saw the Panorama programme on Monday May 18th entitled "Antibiotic Apocalypse" at 8:30 pm on BBC1?
It was all about the global advance of antibiotic-resistant super-bugs and the threat they pose to modern medicine and patients the world over. Fergus Walsh, the reporter, went to India, where he found restricted, life-saving antibiotics being sold illegally without prescription. In Britain he spoke to NHS patients whose recovery depends on the efficacy of these drugs.
I was most interested in the implications for chemotherapy patients if they do not have effective antibiotics during cancer treatment.
I was interested as well in the bit about the lack of new antibiotics. There is no profit in this medication. I was also interested in the bit about finding loads of bacteria in mud, from which they can make effective new drugs. Did anyone see this programme?
I did mention articles in the New Scientist magazine about over-medicating people on other drugs. Have any of you seen this article?
For all of this you may be able to find information online.
In the Daily Express on Tuesday May 19th I found various bits of information. I always buy this paper on Tuesdays as it is always about Health.
I saw the following:
Medical helpers to see patients to ease GP pressure. This article mentioned the use of medical assistants. What does this mean? Are we going the way of teaching assistants.
There is a very interesting article in the section Your Health: "Is it time to veg out?". It says "|If you are considering cutting out meat for ethical, environmental or health reasons, we show you how to maintain a a balanced diet". It then has 16 points with headings on how to do this. Number 1 is "It could lower your risk of disease". I am sure you can find this article on line. The full version apparently is in the May issue of Healthy Food Guide magazine. You can get healthy vegetarian recipes at healthyfood.co.uk.
Another interesting article under Your Health is entitled "We worry more about achy knees than getting cancer" and there is a list of the top ten health concerns of older people (the over 50's).
1. Aching joints 49%
2. Losing brain capability 44%
3. Poorer vision/eyes 44%
4. Putting on weight 41%
5. Unhealthy heart 38%
6. Lower energy levels 38%
7. Emerging cancers 37%
8. Weaker bones 36%
9. Getting weaker 34%
10. Rising cholesterol 34%
Tips for keeping well will be well known to us on thread. They are:
Maintain an ideal body weight to put less stress on your body.
To maintain your ideal body weight and help joints, eat plenty of fresh fruit and veg, whole grains, nuts and seeds and at least two portions of oily fish a week.
Fruit and vegetables and nuts contain antioxidant nutrients that can help reduce inflammation and protect against cell damage, while fish oils can help prevent and manage arthritic conditions, lower the risk of heart disease and have a protective effect against some caners.
This article was by Hannah Britt.
That is about all for today.
I am now just one month away from that ten year target, June 20th.
Thinking of you all and hoping that you, Amanda, are still making good progress.
Hoping all is well with InspiredbyDolce, Jackpot (Gill) and Tom, from whom we have not heard in a while.
Fond thoughts to everybody.
Sylvia
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hi Sylvia / everyone
Yes not doing too bad thank you. Went to see onc yesterday. I had one lymph node affected but he said only a micro or something. As there was still a trace of cancer after the surgery I will have to have rads to chest wall.
Have developed a very painful lump near to the arm pit. He seems to think it is a clot of blood that should go ( nothing is straight forward is it)
Ibiza does sound lovely Michael .. I've been a couple of times but not to the party side lol. Can't wait until I can go away again I love my hols .
Wishing everyone a lovely day
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Hello Amanda,
I was glad to know you are getting along alright. Do not worry about the one lymph node affected. I also had just one affected, the first one, the sentinel node.
I think it is good that you will have some radiotherapy that will help to mop up anything. Most patients have this as the standard is surgery, chemotherapy and radiotherapy, or surgery and radiotherapy. Let us know when you start.
I hope the painful lump goes away. Have you asked whether it could be a seroma that sometimes forms after surgery.
I was interested to know that Ibiza is divided into two sides. When it is portrayed in the media it comes across as a party mad island for the young.
Keep well and have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia and all,
Sue, I hope for good news from your scan results. These are always such scary occasions!
Sylvia, I agree with you about back surgery. I have seen several people who have one, and then another, and sometimes another. It drags on for years and hardly seems worth it to be constantly in that state. I have a sis-in-law who had a serious back surgery in January. It is a 6-month recovery, for a long while she could not even sit, she had on such a stiff brace at all times that she could only stand or lie down. I do hope it all turns out well for her. I would have to be in much worse pain than I am to even consider it. I think I am so used to the problems with my lower back that I have learned not to do things that aggravate it. My shoulder is a different story, since it is very hard to get through the days without using your right arm.
I could get educated on British politics if I researched it. The general news over here does not really cover it, only to say the Labour party, for example, won an election. On the other hand, the royal baby caused quite a splash. Our media for the most part seems to find a sensational story and then just report on it over and over. Meanwhile, there are significant things going on in the world that should be talked about more. Right now our president seems to be trying to get people up in arms about "global warming"; my attitude is that even if it is warming. I do not believe it is humankind's fault, generally speaking. The earth has been here 450 billion years and has been boiling hot and covered with volcanos, freezing cold and partially covered with ice, and covered with water at various times in it's evolution. For most of that time there has not been a human being anywhere in existence.
That is not to say I don't believe in conservation. California is having a big "lack of water" problem. Much of it caused by too many people living and demanding water in what is really a desert climate. In that case, people can make a difference on a regional level. Whether it's enough of a difference remains to be seen. Also I wold think the oil tankers could figure out how not to have oil spills, after all these years. And yet they keep happening.
In that respect, I am happy to be living in the middle of the country. We usually have wet stormy springs, humid summers with a period of dryness, and then a wet fall. Makes for lots of weeds and bugs, but at least we usually don't have to worry too much about water; although we do have the occasional drought. When it comes down to it, we are all quite at the mercy of Mother Nature at work all around us.
It was funny to read your description of the Royal turnout for the opening of Parliament. I happen right now to be reading a biography of Elizabeth I. She, of course, had a lot more power than the current Queen. But lots of pomp indeed. It is also interesting to read of the "Progresses" they would make across the country to visit with "the people." It must have been a daunting experience to have to host the Queen and her hundreds of courtiers for however long she decided to stay. Some of the hosts found their larders empty by the time they left, but didn't dare complain about it!
I hope you are well, and that the sun will come out for you today. It is shining here. We are heading into Memorial Day weekend. It is the weekend to remember those who have served in the Military. Many people just think of it as a long early summer weekend with lots of time to party! My husband was in the Air Force during the Vietnam Era, I will visit his grave and others around at some point this weekend.
Have a good weekend, Sylvia
Mary
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Hello maryna8 (Mary),
I think you are right to be very cautious about having any back surgery.
I am not surprised that the news about a "royal baby" gets more news than serious news. It is the same here. The media loves sensationalism. The public at large seems to lap is up too. I agree with you about global warming. I think that we just have changing weather patterns in nature. As you say, we are all at the mercy of Mother Nature and we cannot beat it.
I was interested to know that you were reading a biography of Elizabeth I who turned out to be one of the strongest monarchs. It is ironic that she became queen after all the performance with Henry VIII trying to get a male heir. It is unbelievable he had six wives, two of whom he beheaded, two divorced, one died and one survived him. His only male heir died as a young boy after being king for a short time. On Wednesday, May 27th, we have the opening of parliament and to watch it you would think we were still in the Middle Ages. I would hope by the time the new baby might be due to take the throne, this funny old country might be a republic with an elected president, an elected upper house, separation of church and state and the abolition of a feudal monarchy.
I am fine and getting used to the idea of no more check ups at the hospital. I have just 27 days to go to my official ten years since diagnosis on June 20th. It would be nice to feel that this means I am cured, but, of course, I know it does not.
I was interested to know that you are heading into Memorial Day weekend and also that your husband was in the Air Force during the Vietnam era. I can understand that you will visit his grave and others this weekend. For us in the UK this is Late Spring Bank holiday so Monday being a day off for workers. It is the same here with people focussing on what they consider to be having a good time. Exmouth is full of visitors and they are very easy to spot. We are within walking distance of the sea front but very quiet compared to the sea front and the town.
I was wondering whether you receive the Chris Woollams e-mail from Cancer Active. He has integrated a lot of health issues with the latest one. It is entitled "Your health. News you can use today". Dated May 15th 2015. I am sure you would find it interesting and you can sign up for it for free. It is largely about cancer but there are other things as well. One that caught my eye was "Meta-study shows saturated fat has no influence on heart disease".
Another one that should be of interest to all of us on this thread is one entitled "Triple negative breast cancer progression reduces with natural compounds". I have got to read this in more detail, but it says that "a research study in mice has confirmed that a supplement containing a number of bio-active natural compounds, each known to have anti-cancer benefits, can inhibit metastases in triple negative breast cancer. This is not the first time we have reported that natural compounds can have positive effects with this difficult disease".
Apparently, a branded natural compound, called BreastDefend (BD) was studied for its ability to reduce metastases and progression in triple negative breast cancer. It was studied at the Methodist Research Institute at Indiana University Health.
The branded compound contained
Modified citrus pectin (MCP)
Extracts from medicinal mushrooms (Coriolus versicolor, Ganoderma lucidum, Phellinus linteus)
Medicinal herbs (Scutellaria barbata, Astragalus membranaceus, Curcuma longa)
Purified biologically active nutritional compounds (for example, I3C/DIM-indole 3 carbinol/diindolylnethane - and Quercetin)
There are a lot more details on this page about how it all works.
Let me know if you have a look and what you think.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am just popping in to wish all of you a happy late Spring Bank Holiday if you are in the UK and happy Memorial Day if you are in the US and a belated happy Victoria Day in Canada.
Best wishes.
Sylvia
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Hi Sylvia
I have been thinking about your theory that the opinion polls were rigged and personally I don't think that it happened, simply because too many people would have had to be involved. But I do wonder if there maybe an inherent anti semitic streak in the British electorate as there has only ever been one (Disraeli) PM with Jewish roots.
I watched the program about the shortage of effective antibiotics and found it worrying. We seem to be sleep walking to disaster. Back in the nineties I remember watching a documentary about phage therapy but heard no more. You can read about it here http://en.m.wikipedia.org/wiki/Phage_therapy
seems like another case of not many bucks in it for big pharma.
Very exciting times in the Republic of Ireland with the referendum. Whether one agrees or disagrees with the result it is a huge sign of how the country has moved on from the tyranny of the church. It shows NI even more regressive than before. I heard Peter Tatchwell say the NI is the most homophobic country in Europe. Unfortunately it wouldn't surprise me if it wasn't the most racist. One of the top tv presenters said that it seems that we have to hate someone.
I hope the weather perks up this week.
Michael
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