Calling all triple negative breast cancer patients in the UK
Comments
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Hello Lindsay,
I have read the petition and agree totally with the 7 points, but I am not sure those of us outside Ireland can sign.
I cannot believe that in Ireland there is not a full National Health Service. When people are ill they should not have to worry about their ability to pay.
Your centre sounds marvellous.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Thanks for linking into our petition.
I am not sure on the validity of people from outside Ireland signing it but I shall ask my sisters and nieces to.
I wanted for you to see it as I value your opinion. Also it may give an insight into cancer services here and how they also can be a two tiered system.
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Hello Lindsay,
I am always glad to be of help. Please let us know how the petition goes and about anything new at the centre.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia and everyone
Sylvia I had my injection last Sunday and unfortunately I threw away its pocket. But I m sure about the name Dipherline and the phrase "every three month" on it. Also, the term Dipherline is what my oncologist is always insisting on.
Yet I'm not going to rely solely on my oncologist and my plan is to ask for second and third opinions as well.
If I come to conclusion that he can not convince me I'm going to change my oncologist and do my checkups with another one.
Lots of love to all
Hanieh
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Hello Hanieh,
Thank you for your post.
Depherline is the obviously the name of the drug and we know from information on line that it is used to treat prostate cancer in men. We are not doctors on the thread but certainly I cannot remember anyone on this thread mentioning that they were on this drug.
I was surprised that you have already had one injection. I was wondering how you are feeling after it. Have you been warned of any side effects? On the link that both Peter and I looked at and posted, there were a whole load of side effects.
Are you still going to get a second opinion?
I remember you said that your oncologist wanted to shut down your ovaries. Have you asked him why? Was it to switch off oestrogen production? I am a great believer in keep asking questions.
I do hope that someone on the thread will have more information.
How are things going through Ramadan? How many more weeks to go, roughly?
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello everyone,
I was wondering if any of you saw the Channel 4 programme at 8:30 pm last night, called Super Foods. It was the first part of three and was about the benefits of grapefruit, kale, and xylitol. I do not really believe in super foods, just believe in an all round healthy diet.
Grapefruit was all about how it may help people to lose weight by burning up fat in the liver. You only needed 40 a day!!!
Kale was all about how it contains two substances that are good for the eyes and may help delay macular degeneration of the eyes. Again you have to eat loads of it. I do have it in my diet and have always cooked it. I eat it mainly to get calcium. People seem to be putting it in a blender to make a drink, but the programmes seemed to say it was better cooked and drizzled with olive oil.
Xylitol was the next product discussed. It comes from pine trees and is processed into a sugar-like substance. It is very sweet and used extensively in Finland. It is given to children in the form of sweets to chew in order to remove plaque from teeth and prevent decay. Have any of you had it? I have seen it and tried it from Holland and Barrett in the form of chewing gum and mints.
The thread is too quiet so I suppose you are all enjoying the summer.
How are things going with you, Amanda?
Best wishes to everyone.
Sylvia
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Hi Sylvia
Thanks a lot for all your warm responses.
As a matter of fact, we have more than two weeks to the end of Ramadan, yet , being in the hottest time of the year and the longest days l am not able to fast all days. As I believe the greatest gift from our Lord is our health I do not like to put it in any danger. So despite all the great spirituality and self control that fasting gives you, I decided not to fast all days. I want to have enough strength and energy to lead all aspects my life in the best way.
However I never lose any chance to meditate and pray for myself and all - whether healthy or sick- not to be affected by any kind of cancer and I believe even if one person is saved by my prayers that can be a great blessing for me.
My summer classes have started and I'm happy to have the chance to enjoy my classes and my students in a complete physical and hopefully mental health as this time last year was the beginning of this hard journey.
Lots of love
Hanieh
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Hello Hanieh,
It was nice to hear from you.
I think you have a very sensible approach to Ramadan and the fasting. You have been through a real ordeal with your breast cancer journey and it makes sense to get yourself strong and well again, so that your immune system can fight.
Our health is the most important aspect of our life and nothing should compromise it. It is very important to keep hydrated in hot weather.
We are having a spell of hot humid weather here, but in Exmouth we are lucky to have a sea breeze that helps to keep the temperature down. We could do with some rain for the grounds here.
Take care of yourself.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Just catching up with the thread, which seems fairly quite which I think is a good sign.
I was in Brentwood last week for a surprise 30th birthday party for Janette's eldest. She would have been very proud. If you use twitter Essex has a very good thread where it is possible to stay up to date with happenings in the county.
Had you been following the happenings in Greece? Personally I think the actions of the EU and IMF are a disgrace.
It is very muggy here.
Michael
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Hello Michael,
It was nice to see you back on the thread. Yes you are right the thread is fairly quiet at the moment for posts, but there seems to be plenty of people viewing. I do hope it is quiet because people are not being diagnosed, but it could also mean that they have all the information they require to take control of their treatment and get through it. I think a lot of people are on Facebook. Even with all the information I still think threads like this are useful for people to come together and talk about anything they like.
I am always interested in your visits to Brentwood and it was good to know you have been there for a happy occasion. Is there anything new going on in Brentwood these days?
I am not on Twitter or Facebook. I am assuming you are on both. I was interested to know that Essex has a very thread where it is possible to stay up to date with what is happening in the county.
I do have cousins in Essex, so they do tell me bits and pieces about what goes on. I have a cousin in Theydon Bois, various cousins and friends in Wickford, and a cousin in Boreham just outside Chelmsford. We do not get together much these days.
I have been following the happenings in Greece and I cannot believe the way the people of this country have been treated. I am totally on the side of the Greek people and the new government and, like you, I think the way the EU and the IMF have treated them is a disgrace. I cannot understand why Germany is dictating to all the other countries and is benefiting from the EU more than any other country. I think this is Germany's way of winning the war in Europe that they lost in the First and Second World Wars. They are certainly the bullies of Europe. I cannot believe they have been selling high priced armaments, planes and tanks etc. to this country and getting them into debt. I think the Prime Minister and the Finance Minister of Greece are brilliant people and I do not think they should give in to Germany. I do hope they win the referendum and that they say No to further austerity. I think the EU is totally undemocratic and they have destroyed Greece, Spain, Portugal and Italy.
I have also been following events here and was sickened to hear on the news this evening that the Tory Government had plunged the children of this country into further poverty and taken away children's rights. I also read in the paper that the very poorest in this country are paying more tax than the very richest. Where are we going?!
I have also been following the Labour leadership and have not been impressed with any of the candidates except Jeremy Corbyn. I think it is about time that the Labour Party decided whether it was a social democratic party or "a Tory light" party, which we do not need. No one can do nasty like the real Tories!
I have just been going through the July edition of the magazine What Doctors Don't Tell You. There is a lot of useful information in it and I need to go through it again.
It has been a very humid day today and I think we need a good storm. It has tried to rain but it just did not happen. There are lots of flying ants around and Raymond tells me that is usually the sign of a thunderstorm brewing. Exmouth is full of holidaymakers and tons of ice cream is being sold.
Four women have gone through breast cancer treatment in this complex and one has died from the breast cancer. I fear another woman here is about to be diagnosed from what she has told me.
That is about all for now. What is happening with the Janette Collins Foundation these days? How are your three step children? How do you feel alternating between England and Northern Ireland?
Sending you best wishes.
Sylvia.
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Hello adagio,
I just wanted to wish you a Happy Canada Day. I hope all is well with you.
Fond thoughts.
Sylvia xxxx
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hi Sylvia / everyone
Hope everyone is doing ok.
Ive almost finished second week of radiotherapy, one more week to go. I'm starting to go a little bit pink but nothing too bad yet. We are told to use only simple products and aqueous cream, nothing else. I was going to use aloe Vera as I have found this to be very good before...but best do what I am told lol.
I didn't watch the programme about super foods Sylvia, I bet it was really interesting. I work in an opticians and have read that kale is very good for eye health. Most days I do have a drink of green juice made in a juicer. We put things in it such as kale, spinach carrots etc.
Hanieh I bet you are happy to get back to work and get a bit of normality back to your life.
I have been told after my treatment finishes I had a check up in 3 months( I don't know what this involves). After that yearly check ups . I can ring the hospital if any issues arise but feel 12 months is a bit long. I was just wondering if this is the same for others or do you have more frequent checks ?
Anyways I hope that everyone has a good day . It's a bit cooler here today feel we might get a storm later.
Amanda
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Hello Amanda,
I was glad to know that you have almost finished the second week of radiotherapy and that things are not going too badly. I was also told to use aqueous cream and did find it useful. I was also told not to use my usual Dove unscented soap, as apparently it has metal in it. I was told to use the Simple brand while doing the radiotherapy and that is what I did. Afterwards I went straight back to my Dove unscented soap.
I do hope you will not get any more red than the little bit pink that you are at the moment.
I do not understand what the objection is to aloe vera gel. I did in fact use it during my radiotherapy and all was well.
The programme about super foods was interesting and remember there are two more programmes to come. They are going to cover the others that were listed in the Radio Times last week. They are as follows:
Kale
Kefir (remember, this is made from milk, which I would not touch)
Grapefruit
Xylitol
Blackcurrants
Broccoli
Quinoa
Kippers
Spirulina
Sweet potatoe
Most of these are in my diet anyway.
Try to watch it and let me know what you think. As I said in a previous post, I do not really believe in super foods, just in an all round diet.
I was interested to know that you work in an opticians. It is true that kale is supposed to be good for your eyes. It contains lutein, which is supposed to be necessary for good eye health. You can get supplements of lutein at Holland and Barrett.
I was also interested to know that you are having green juice made in a juicer. How much kale and spinach do you put in to make a glass? I have been put off juicing because I keep reading juice is too concentrated and especially if you juice carrots. I do remember from the programme that it was said it is better to cook kale and put some olive oil over it. There is so much information going around that you can become very muddled about it all. I tend to read about all these things and then just make my own mind up about what I am going to do. One thing I know about myself is that I do not take any notice of the medical profession when it comes to nutrition.
If that were me I would check up about how often you will be offered check ups. I went every three months for about two years, alternating between the oncologist and the breast cancer consultant surgeon. After that it went to every six months, again alternating. This went on for about three years and then I was discharged from the breast cancer consultant. For about the past five years I have seen just the oncologist once a year and then finally got discharged from her this year. The check ups were mainly physical ones of good breast, mastectomy area and the lymph node areas under the arm and around the neck. During the ten years I had regular mammograms. I had no scans or blood tests.
Keep up the good work. Your journey is nearly over.
Fond thoughts.
Sylvia xxxx
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Posted by me on November 17th 2010:
Hello everyone.
I have been reading back through all the postings since the inception of this thread, to refresh my memory. I have noticed that we have not mentioned much about what goes on when a person is first diagnosed.
First of all, it would be interesting to know how we all discovered that we had a lump. How many of you out there discovered the lump yourselves and how many of you were informed after being called back after a mammogram? Since many of you are younger women, you were probably not getting mammograms, so I am assuming that you discovered the lump yourselves. Did you act immediately and get checked out by your GP or did you delay? Tell us your reactions. I delayed quite a while before going to the doctor, even though I knew what was wrong, so my advice to anyone discovering a lump is to get it checked out immediately. I know that on some of the threads there have been big discussions about the pros and cons of mammograms. Tell us your own views on this. Do you think the risks of exposure to radiation are worth it?
For those who are newly diagnosed with breast cancer, after seeing a GP you will be referred to a consultant. The consultant will do another physical examination and then will do a biopsy by doing what is called a fine needle aspiration. After that you will attend a clinic, have a mammogram if you have not already had one. This will be followed by an ultrasound, during which a piece of tumour is removed by a core biopsy for inspection. After that, in my case, possible options for treatment were explained. I returned to see the consultant about a week later. It was at that point I was told that the tumour was oestrogen negative, progesterone negative and HER2 negative and I was told that I would need chemotherapy, mastectomy and radiotherapy in that order. I was also told that the prognosis was not good, because, after treatment, Tamoxifen and the like would be no good. I was given a week to think everything over. When I returned I declined treatment for the moment and said I wanted to check out homoeopathy and private alternative treatment. The consultant was quite amenable to this and referred me to that Royal Bristol Homoeopathic Hospital. I strongly advise all newly diagnosed people not to delay orthodox treatment, but, by all means, to use homoeopathy and alternative treatments if desired. Only orthodox treatment, in my opinion, will bring you into remission. I took Iscador, as an adjunct, in oral form, for five years after diagnosis. It is an immune booster and I feel that it helped me. My homoeopathic consultant gave me other medications as I went through treatment, and I felt that they helped me a lot.
Before the basic treatment you will also have scans to find out what is happening in the rest of your body. You will have a CAT scan to see what is happening in the organs of your body and a bone nucleide scan to see if there is spread to the bones. In the US they seem to be having all sorts of scans, such as MRI scans and PET scans, but I do not know whether this is before or after treatment. On another thread I read about patients wanting MRI scans as well as mammograms, as part of their post-treatment check-ups. We always have to bear in mind that the health system is run differently in the US.
When you have been through the above procedure, you will then start on the long journey of chemotherapy if necessary, surgery and radiotherapy.
I hope this information will help all newly-diagnosed patients, whether triple negative, or hormonal sensitive.
Best wishes.
Sylvia
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Hello everyone,
I have been reading back to the first few pages when this thread was just beginning and the previous post is one I made on November 17th 2010 when the thread was just over a year old. It was all about what to expect when first diagnosed. I thought it might be useful for anyone newly diagnosed to have a look at as the procedure from discovery of a lump to diagnosis and treatment arrangements do not seem to have changed much.
I noticed back then that I was also mentioning proton radiotherapy and saying that I had read it was much safer than ordinary radiotherapy. It would be useful to know whether this is now being offered anywhere.
Best wishes.
Sylvia
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Hi Sylvia
I don't use Facebook although I do have an account. I don't like the format and can't really get my head around the concept. Twitter allows me to keep up to date with things I am interested in without having to contribute anything if I don't wish to.
The big news in Brentwood this week is the murder of John "Gold ginger" Palmer in South Weald, so be was a neighbour of the kids father. I wonder if he knew that he lived there.
The situation in Greece is making me increasingly angry. It is basically a conflict between big business and democracy. If there are no concessions to Greece then we can truly declare democracy to be dead.
My youngest, Alex, is going to use his vote as a member of the GMB to support Jeremy Corbyn. He feels me that the odds at the bookies are shortening all the time.
Two weeks ago I finally got all the paperwork together to register the foundation as a charity and submitted online. I have heard nothing. NI is in shut down mode for the July holidays. Basically nothing gets done between mid June and mid August and considering that not much gets done at other times of the year, I am not over optimistic. :-(
Now if I don't walk the dog I will be accused of hypocrisy ;-)
I hope everyone has a good weekend.
Michael
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Hello Michael,
Thank you for your post. Like you, I cannot really see the point of Facebook. It does seem to be a way of life for a lot of people who post lots of photographs and indulge in inane chatter. I can see the usefulness of Twitter for keeping up to date with things of interest, but I do not like the idea of having to restrict your writing to 140 characters, but I can understand why there is this restriction.
I do not know anything about John Palmer in South Weald. What is that all about? It sounds like some gangland slaying. What is it about Essex that it seems to attract gangsters? When Raymond and I were there the brother of someone we knew was found murdered and dumped in the countryside. We think it was drug related. We also remember a story about a gang being found shot dead in their Land Rover near Hanningfield.
I can understand how angry you are about the situation in Greece. I agree with what you say. I have been listening to everything I can about what is going on and I do agree with you about big business versus democracy. It is a big country, Germany, bullying a small country, aided and abetted by the big undemocratic guns of the EU. I am hoping the No vote will win the referendum, but I fear the Yes vote will win. Greece has been taken to the cleaners. Beneath the surface there is a plot to oust any government that is to the left of politics and is trying to defend ordinary people.
Last night I was watching the Keiser Report with Max Keiser on RT. It is one of my favourite programmes. He has some really brilliant guests. He has been having a go at the way Greece has been treated. I also watch Peter Lavelle, Crosstalk, on RT and Going Underground with Afshin Rattansi. These are serious discussion programmes and extremely informative. I also watch the hourly UK evening news six days a week on RT. It is much better than the BBC or ITV.
I cannot see that we have much democracy in the countries of the west. Here in the UK we have a feudal monarchy, the unelected House of Lords, an unfair system of first past the post, people with titles and a government defending the rich and oppressing the poor.
I was interested to know that your youngest, Alex, is going to use his vote as a member of the GMB to support Jeremy Corbyn. Raymond and I will be casting our votes for him as well.
How are your other two stepsons getting on? What is happening with the one who hopes to have a career in politics?
I do hope everything will soon get settled so that you can register Janette's foundation as a charity.
I had to laugh at what you said about how slow moving everything is in Northern Ireland. I cannot possibly believe that it can be slower than in Devon! For years East Devon District Council have been debating about a bus shelter in the centre of town. The cost of this is to be met by Devon County Council, but East Devon keeps turning down their plans. In addition, East Devon demolished our nice peaceful square in the centre, known as the Strand Gardens, and have turned it into a three ring circus. The grass verges around the town and out are not being cut and in some places are now four feet high. I wrote a letter of complaint to Devon County Council about not cutting the verges, not dealing with weeds and not attending to threadbare roads. All I got in reply was that there was no money for anything. It is pathetic. Sometimes I find it so slow and backward here that my brain hurts!!!
Have you found any new research about cancer in general, breast cancer and TNBC in particular, and lymphoma?
I have been looking back at my posts when I first began the thread and I do not think great progress has been made with breast cancer since then. Breast cancer is certainly more out in the open, especially here in the UK, and I like to think patients are more informed, but treatment is basically the same. Someone I know is about to be diagnosed with breast cancer, so I shall be interested to find out what she is told in the way of information. I shall always remember that my breast cancer consultant told me in 2005 that most patients did not ask questions, did not want to know anything, but just wanted to be treated. I hope it is different now but I suppose I am forming this opinion from posts on the thread.
How is your dog getting on?
Keep in touch.
Best wishes.
Sylvia
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good morning Sylvia,
I must talk to some of the newly diagnosed women at the centre to see how and what they were told. I know that some have been told as I was,that surgery would be first - then I probably wouldnt need chemo but would have radiotherapy. Then when returning for the full results after surgery and knowing that it was Triple Negative I was told that I would need chemo. The oncologist however wasnt 100% certain that chemo would benefit but having looked into it I decided that despite the side effects I would go ahead. I personally am glad that I did.
I think that they do this so that you do not get overwhelmed at the thought of what may lie ahead. Its taking each stage at one time.
I have had a busy week. My sister returned to England last night. We spent a lovely few days in Wexford with Kerry,and the boys. The weather was good and we went to the sea and a lovely old house that has a fairy walk through the woods.
Max was back with the audiologist and will only need one hearing aid in the summer months as his glue ear in one ear has improved . He may need more intensive physio as he is still very wobbly but is determined to hold his head up.
At the centre we had a 4th July barbecue which was great fun and so good to see everyone that had made the effort to be there despite being in treatment.
Last night my friend shaved her head for the centre. She did it in a pub . There was a big crowd because of the local street arts festival and there was a James Brown look a like singer on who drew people there.
I am going to the I C T U conference as a retired member this week in Ennis. Subjects on the agenda include the economy both nationally and globally, access to healthcare, the North and a section on pensions and living standards.
I am looking forward to attending and will view proceedings through different eyes since my last conference 7 years ago. I havent seen the full agenda and hope that there will be some interesting key note speakers. I intend to take my petition with me.... so hope that there will be government ministers there.
Trying to rest today as I have conference briefing tonight then conference which can be very tiring especially when focusing on all the speakers and motions. I wonder how it will make me feel.
Hope that your weather is good and you are managing some time in the garden
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Hello everyone,
I am posting this picture of another part of our grounds. In it you can see a white flowering evergreen hebe, to the side some evergreen osmanthus and to the other side a variegated evergreen euonymus and to the side of that a winter hardy red blooming fuchsia shrub. In front, just coming into bloom a red blooming bottle brush shrub, otherwise known as a callistemon. This is also an evergreen. In front of that a row of small variegated euonymus. In big grounds like we have in our apartment complex, it is important to have shrubs that give all year round body.
The thread is really quiet as far as posts go. I know most of you on here have finished treatment, but we still need to hear from you and if you have friends or family going through treatment or newly diagnosed with TNBC, let them know they are welcome to come aboard.
Best wishes to you all and a belated happy July 4th to our American friends.
Sylvia
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Hello Lindsay,
What an interesting post. I shall be answering later on when i have a bit more time. I have just spent six hours working in the grounds.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Three cheers for Greek democracy and saying get lost to austerity. I am so sad that Yanis, the Greek Finance Minister, has resigned. We need someone like him over here. What a cheek that the bullies and unelected bureaucrats have forced him out. What a cheek that they have more power than elected representatives of the people. I think the Germans have got too much power and have benefited the most from the EU. It is ironic that they had their debt cancelled after causing and losing two World Wars.
Talk to you later.
Best wishes.
Sylvia
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Hi Sylvia and everyone
Sylvia I always enjoy the pictures that you post. Good for all your neighbours and all the passerbys who have the chance to enjoy the beauties of your planted flowers.
To be honest with you, sometimes I find this site scary as I have seen how some survivors suffered a reoccurance or a new primary or even the patients that have gone from stage 1 right into stage 4.
I know death is something that is inevitable but being a young mother and seeing my daughter 's inoccent looks and my husband and family 's love makes the thought of death very unappealing and saddening.
I deeply pray for all my sisters here to enjoy long healthy survivorship.
Lots of love
Hanieh
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Hello Lindsay,
Thank you for your post. We are lucky to have you on the thread and to get all this useful information from the centre. I think it is very important for newly diagnosed patients to take control of their whole cancer treatment and to push for information. There is too much information on the internet now for patients to go through treatment without being fully aware of what is going on. First and foremost they need to know what kind of cancer it is. The most common is invasive ductal carcinoma (IDC) and DCIS but they need to know whether they have one of the rarer cancers. They need to know, as you say, whether they will have chemotherapy and whether it will be before or after surgery and why. For surgery they need to know about lumpectomy and mastectomy and to make a fully informed decision about what they want. They need to know whether they will have radiotherapy and why or why not. In addition of course they need to have explained to them hormonal and non-hormonal receptor status. I think it is also important to know the stage and the grade.
It is a lot to take in but I think you need to be in full possession of all the facts so that you can go through the journey with confidence.
You do seem to have had a busy week, but it looks as though you have been having some happy family time.
I do hope Max will continue to make good progress.
I was interested to know that you are going to the ICTU conference. It all sounds very interesting. Let us know how it goes. I do hope you have good luck with your petition.
Today it is Budget Day and I am not expecting anything good for ordinary people from George Osborne the Chancellor. I think he is nasty and insensitive. The poor will no doubt suffer more so that the rich can benefit.
We are having some well needed rain.
Wishing you all the very best.
Sylvia xxxx
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Hello Hanieh,
I am so glad you enjoy the pictures. I shall post some more as different shrubs come into bloom.
I am so sorry to read that you sometimes find this site frightening. I think you have to be careful what you read. If you go thread-hopping you can get very confused and frightened. Remember that we are all different and our breast cancers are all individual. Remember also that more of us survive than die. You have got through your cancer journey and you must look forward to a normal and happy life with your family. Worry will not serve any purpose. It is true that cancer can recur, that it can spread and that there can be new primaries. We have to live with that fact, but try to put it to the back of our minds. We have to live the day, fully, and that is all we can do. In our everyday life we have to eat healthily, keep mentally and physically active, avoid negative stress and get some enjoyment. Keep to your own cancer journey and do not focus on what happens to others. You are not others. Try to keep looking on the bright side of life.
You might like to sign up to Cancer Active and Chris Woollams newsletter. I have just receive my latest one and am about to print it off to read it.
Take care and look after yourself.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
That was a great result in the Greek referendum although it seems to have had little effect on the rest of the EU. If I get to vote in the UK in /out referendum than I shall vote to leave. The EU is a joke.
John Palmer was implicated in the Brink Matt robbery a number of years ago. I guess his killing is a gangland hit. I think Essex becomes home to East end hoodlums as they get richer just as Kent becomes home to SE London hoodlums, who I think are a much nastier bunch. I suppose most people think that an Essex accent is like they hear on Towie but it is really quite different. If you meet real local people from the Blackwater estuary the accent is very rural.
My other two step - children are doing fine. Daisy is at my sister in law's house in France and Matthew is pursuing his political career. We haven't talked leadership contest but I would guess he is supporting Liz Kenndel. Daisy is starting a six month course at the Prue Leith school in September. Personally I think she is mad but it is her money.
I am going to write a letter to the health trust about the way Janette was treated in the ER department on one of her hospital admissions. I know it is three and half years but it has been nagging away at me. I will post it here when I get it done.
Michael
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Hello Michael,
It definitely was a good result in the Greek referendum. I also admire the Greek government for being able to organise a referendum so quickly, it shows there is something wrong with our own government since we cannot have a referendum on the EU until late 2017. The EU will not grant any concessions so Cameron is just messing around. I shall definitely be voting to get out of the EU as I think it is completely undemocratic and dictatorial, and not to mention a big, expensive, bureaucratic mess, lorded over by Germany.
I was very interested in what you said about John Palmer. After you mentioned it, I came across an article about him in the i paper on Tuesday, under a regular feature article entitled "Life in Brief - John 'Goldfinger' Palmer, Criminal". What an eventful life he had. The bit that made me laugh was witnesses said they had seen a crucible operating in a hut in the garden of Palmer's Georgian house. In court in 1987 he convinced the jury that although he admitted melting down gold bars, he had no idea they had been stolen! He was acquitted and blew kisses to the jury from the dock. After that he was known as Goldfinger. Have a look to see if you can read this article on the Independent website. Palmer was actually born into a poor Birmingham family. I wonder who actually killed him in the end.
I agree with you about the Essex accent. It is indeed very rural, but there are a lot of misconceptions and stereotypes about Essex. Like everywhere else it is a mixture.
I was interested to know about your stepchildren. What is Matthew doing exactly in pursuit of a political career? I do not like Liz Kendall at all, and I think she is more suited to the Tory Party. I went to a meeting of the local Labour Party this week, about the leadership and deputy leadership candidates. The Chairwoman arranged it so that we went through the leadership candidates in alphabetical order and then onto the deputy leadership candidates. Everybody had an opportunity to talk about each candidate and then we had votes. When it came to Jeremy Corbyn, I put my hand up and got in my opinion and why I was supporting him. When it came to the vote I was glad to see he came out with overwhelming support. Andy Burnham, Yvette Cooper and Liz Kendall got virtually no support.
As for the deputy leadership, there are five candidates. The local MP for Exeter, Ben Bradshaw, got the most support. He is a good MP and in fact the only Labour MP in the South West. I voted for Tom Watson, as he is a man of integrity and I remember reading his book about how he tried to find out what had happened to Dr Kelly, the man who said that there were no weapons of mass destruction in Iraq. He was found dead and I think he was murdered to shut him up. Ben Bradshaw is on the right of Labour and I do not think he is much of a democratic Socialist.
I was interested to know that Daisy is going to the Prue Leith school. Is she going to be a chef? Is Alex still in Northern Ireland?
What do you think of the budget?
I think you are right to write a letter to the health trust about the way Janette was treated in the ER department on one of her hospital admissions. Even if three and a half years have gone by, and still nags away at you, it is better to express your feelings about what happened. We all need to speak out more. It is our health service. Good luck with this and please let us know how you get on.
I keep wondering about how much progress is being made in this country with cancer in general and breast cancer in particular. This morning on Radio 4 there was yet another announcement on the news about a breakthrough with breast cancer. This time it was about how it has been discovered that the hormone progesterone helps shrink tumours in mice and how this may help save or prolong the lives of thousands of women. It then says that this is in the initial stages and is many years off, but trials may begin. I think the way it comes over in the media probably gives initial false hopes because you think it is going to be immediate. Of course, it will probably only apply to women with hormonal breast cancers to counteract the hormone oestrogen that promotes tumour growth. I shall try to find out more details, but it would appear not to do anything for TNBC.
The friend and neighbour I have here was diagnosed with breast cancer yesterday and she is at the same hospital as I was at. I spoke to her last night and was glad to know that she appeared to have taken the diagnosis well. I need to speak to her more but I got the impression that she had not been given a lot of information. She was just told she needed surgery and was given the option of a lumpectomy or a mastectomy. She was told that with a lumpectomy she might have to have surgery twice if clear margins were not obtained the first time, so she has opted for a mastectomy. She will have surgery on July 29th, lymph nodes will be removed and examined, and she will come home the next day with the drains in. she will not have chemotherapy, but some radiotherapy. I do not think she was told what kind of breast cancer or receptor status. I have told her that I am there for her and she can count on me. She told me that in the room where she was yesterday there was a notice saying that one in three women over seventy will be diagnosed with breast cancer. I think this means that it is out of control and I think there should be much more emphasis on cause and prevention. The same seems to be happening with prostate cancer and the treatment is really harsh on men. Three men that I know have all recently been through prostate cancer treatment. What do you think about all of this?
I am going to try to read through my latest from Chris Woollams. It is entitled "Six treatments that might just increase your odds of survival" and then it lists them:
1. Immunotherapy – the fourth dimension.
2. Proton Beam Therapy.
3. IPT (Insulin Potentiation Therapy) – fewer drugs, more effect.
4. Shock: Doctors losing patient trust.
5. Be sure you really have cancer.
6. Figs have activity against HER-2 breast and other cancers.
Although the title is "Six" the e-mail has in fact 14 headings altogether.
Very best wishes.
Sylvia
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Just a quick post from conference. We had a Colombian trade unionist speak this morning. What brave people, they live with the threat of imprisonment or worse murder for being in a trade union.
Of course our conference is in solidarity with them and a message and motion of support to the people of Greece.
We are also having a Palestinian speaker. I attended a workshop re Gaza and women that have been out to help.
Must go head of the ETCU due to speak.
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Hello Michael,
I thought I should clarify something. The candidates we voted for at the constituency Labour Party meeting, Jeremy Corbyn and Ben Bradshaw, were the ones that the constituency is endorsing for leader and deputy leader. Of course, later on, we shall all be voting as individuals.
I noticed that Jeremy Corbyn was the only one out protesting last night about all the welfare cuts and he did address the crowds. The others were nowhere to be seen and have been strangely silent about the budget.
Take care.
Best wishes.
Sylvia
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Hello Sylvia,
We are in North Devon and have been here for a few days. The weather is finally better and we move on to Cornwall tomorrow. Just in time for the rain on Sunday.
The budget was a lot better than everyone expected with less cuts. Yesterday the experts were saying it is very similar to what the Labour budget would have been, but still Labour disagree with it.
I agree with the cuts that need to be made to benefits. We cannot keep paying out money that the country does not have. We have a 15 year old disabled son and he costs us little more than a normal child yet we get about £185 per week with carers allowance etc. That's crazy! We have a very good friend who is a single mother and does not work with 2 children and the ladies mother lives with them also. The ladies mother works part time about 10 hours a week. Between then they pay £925 a month rent in a 5 bedroomed house run 2 cars and are never short of money.
Another friend earns £10.50 per hour, lives in a council house and have 5 children Along with his £400 wages per week he gets topped up with over £200 per week from working family benefits and gets cheap rent. they have Sky and the latest phones etc.
I agree some people need benefits but not everyone needs them or need the amounts they are getting
Who ever is elected as Labour leader needs to be a good salesman to sell Labour to the British people. Edd Milliband was never liked by many people as a leader. I cannot see Labour getting back into power for at least another 12 years.
Peter
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Hello Peter,
It was nice to hear from you and to know that you have been in North Devon. I do hope you will get better weather while you are in Cornwall.
Obviously the budget is the topic of conversation at the moment. I watched Prime Minister's questions yesterday and then watched the whole of the budget speech, which I thought was far too long and detailed, especially the first part which I think would have passed over a lot of people's heads. There were definitely parts of it that the Conservatives had poached from Labour and yet during the election they were mocking them. It was Ed Milliband who wanted to tackle the non-doms problems and who introduced the idea of a living wage. Ed Balls was always saying that the deficit had to be tackled more slowly and George Osborne seems to be doing just that now. What Osborne is calling a living wage is more precisely an increase in the minimum wage.
Labour does not oppose everything about the cuts in welfare. They have said they will support the government with the cap on benefits that George Osborne has reduced from £26,000 to £23,000 in London and to £20,000 outside of London. The increase in the minimum wage is a good thing, but it will create problems because the working tax credit is going to be taken away before the minimum wage increase kicks in. It is wrong that the taxpayer has been subsidising the employer through this tax credit, because he will not pay a proper wage. That makes employers the spongers.
I blame the system for being so lax about throwing taxpayers' money around. They need to scrutinise individual cases more deeply.
I am sure that there is a lot of abuse from people who have no social conscience and are quite happy to sit back and take from society and have no thought of putting anything back into society. The system should be after them. I am equally sure there are a lot of genuine cases who need help through difficult times. The welfare state was brought in to support through hard times and the help was meant to be temporary while people got back on their feet. It was never meant to be a permanent way of life.
That friend of yours may now get his day of reckoning. He may lose his working tax credit and his cheap rent. The weak link in this is that it will apply only to new applicants. It should apply to all those already receiving taxpayers' money because they are the ones that have caused the problems and will go on causing them.
The system has got to sort out the needy from the exploiters.
I have no idea what will happen at the next election. A lot can happen in five years, especially with the economic problems worldwide and all the strife and fighting everywhere.
Ed Miliband was done in by the Tory press. In fact, I feel England is run by the media and big business. It is sad that as a woman I do not think much of any of the women candidates. Labour has to get back to the principles of the 1945 Labour government who brought in the NHS in 1948. I think Labour should stick to its principles even if it means staying in opposition.
I do hope all is well with Liz and that you are gradually moving on from cancer.
Breast cancer has occupied my thoughts quite a lot this week since my friend and neighbour was diagnosed last Tuesday. This brings to five the number of us in our apartment complex that have been diagnosed. Two of those were hormonal, one was triple positive and died of metastatic breast cancer, and I am the only one who had triple negative, unless my neighbour has it. She does not seem to have been given this kind of information.
I heard recently on the radio that a drug had been manufactured for cancer treatment that costs £400,000 for a year's treatment! That is immoral.
Wishing you and Liz all the very best.
Sylvia
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