Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk

Hello Amanda,

It is nice to hear from you and to know that you are getting on with your life, post-treatment. I do hope you have a nice time over the next couple of weeks with your holidays to Majorca and Madeira. Make sure you take care of your skin and I would think that factor 50+ will do the trick. You are right to live life to the full.

I was glad to know that you shared my thoughts about raising funds through cake, wine and cheese. I think the best way to raise funds is through money donations. I hope charities make good use of the money because lately we have heard tales here of money being wasted. I also share your views on the biscuits being distributed in hospitals and some of the meals. I suppose that they are having to serve up what people will eat. I can understand your concern about a nurse giving biscuits to a patient with diabetes and cancer. It is strange that some people cannot equate their diet with illness and also how some people prefer to swallow pills from the doctor, rather than change their diet. They seem to think a pill will work miracles even if they make no changes to their diet. I remember how shocked I was when going through radiotherapy that one woman came in all sunburnt, having gone out in the sun at the weekend during the break from the radiotherapy! It was also common to see radiotherapy patients smoking outside the radiotherapy unit while waiting for their treatment. This is why I think the NHS is in so much trouble. Patients have to take responsibility for their health and play their part in getting better.

I was shocked yesterday to hear on the news that the NHS is at breaking point. They were showing queues of ambulances outside A&E waiting to off-load their patients and the hospitals not able to take the patients because they were overwhelmed. My big question is why are so many people having so many health problems?

I think doctors have to take some responsibility too. I am dead against all these statins. I have read about all the lethal side effects but still they are being dished out. I read they cause diabetes and yet one of my cousins is diabetic and has been on them for years. He does not take care of himself and he needs to be read the riot act about his diet, but doctors say nothing. I also know lots of people who have had terrible side effects from statins and feel so much better when they stop taking them. I have read that another thing that statins cause is cataracts.

You probably know more than you think about politics, because politics is about everyday life. I think our proudest moment in this country was the introduction of the NHS in 1948, but the NHS is now being destroyed. I also believe that it is the duty of a government to take care of its people from the cradle to the grave, something that was brought in in 1945. That was another proud moment and something that is being destroyed. We read now all the time about the number of children in this rich country living in poverty and we cannot hold our heads high while this is happening.

It must be interesting working in an opticians. What exactly do you do?

I do hope you have a good holiday. Please keep in touch.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Hanieh,

It was nice to hear from you. I know that Ramadan ended yesterday, so happy Eid. What did you do to celebrate?

I think that all of the people that have gone through this thread have had a great interest in nutrition and how important it is to having good health. It is certainly true that fruit and vegetables play a crucial role in keeping healthy. It is said that vegetarians tend to be healthier than non-vegetarians, but there are different kinds of vegetarianism. I think it is a good idea to eat fruit and vegetables that are in season, but, as you say, we tend to have everything all year round now. I try to buy organic when I can and, if not organic, local produce. At the moment, in England, it is easy to find local produce. Yesterday I bought local blueberries, blackcurrants, blackberries, raspberries and cherries, not to mention organic carrots, local ones, and some green vegetables.

I do not eat dairy products, as I do believe that the growth factors in them are probably a risk in the development of cancer and that in the west there is over-consumption of them. In our shops and supermarkets meat, poultry and dairy products take centre stage, but none of them go into my shopping bags! I remember my breast cancer surgeon telling me that she thought the growth factors in dairy products were one of the causes of breast cancer. We just have to make up our own minds about this. Of course meat and dairy are big business and they will never admit to any health problems from them. It is true that chicken is supposed to be highly hormonal. Some people say that TNBC is non-hormonal so none of this about hormones applies, but I think it does. My oncologist told me that cancer cells mutate and that TNBC does not necessarily start off as such. Again, we all have to make up our own minds what we do.

Wishing you all the best.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I have just heard some new bits of information about cancer treatment and diagnosis in the UK. It just makes me feel that again we are lagging behind. This information said that by 2020 cancer patients will have to get the results of tests for diagnosis within four weeks. That is the target. Apparently, at the moment, there is no target!! I think four weeks is too long to wait in a state of anxiety and this target is set for as far away as 2020.

It is obvious that the NHS is under-funded and under-staffed. Karol Sikora made a statement about the NHS does not have enough money. He is a leading oncologist, well respected and, I feel, very down to earth. He said their is no money in the NHS to fund new radiotherapy machines. That is not good news.

On this snippet of news it was also stated that one in two people born from 1960 onwards would be diagnosed with cancer. That cannot be good news.

You may like to look at the following link with information about cancer in general.

http://www.bbc.co.uk/news/health-33512321

You might be interested to know that Chris Woollams now has Chris Woollams Health Watch with information about disease in general. You can find this on line and you can subscribe to it in the same way as you sign up for his Cancer Active e-mail. I have been exploring it while up information about diabetes, which one of my cousins has had for some time now and is always having infections of the foot. I shall do some more exploring of the site later, as it will also have information about cancer. It is up to us to keep up with information and not to take anything for granted.

Many thanks to the excellent posts this past week from Michael, Hanieh and Amanda.

Best wishes.

Sylvia

maryna8

Hi, Sylvia and all,

I haven't vanished but have been having a lot of Internet connection problems. It's hard for people living in more "connectible" areas to fathom, but we in the rural, hilly parts of Mid-America do not always have reliable means of achieving this. My problem is fixed for now, and hopefully it will last a while. I must say that it is better than it has ever been before and I have high hopes. I had gotten in the habit of taking my tablet with me everywhere in hopes of finding free Wi-Fi to check e-mail etc. But did not usually have time to be posting things here and there.

The last month has been very sad. My dear aunt had been complaining of a stomach-ache for about two months. She had been to the doctor but they did not really start checking things seriously until she started getting very fatigued and dropping weight. A little over a month ago she was diagnosed with very advanced pancreatic cancer and we buried her last week. Things went downhill very fast. She had breast cancer about 15 years ago but the docs said this was unrelated.

I am still having my shoulder, back pain. The orthopedic doc did another MRI on my shoulder and said I should probably have surgery on it since the therapy hasn't helped and the steroid shot didn't help. I am going to have a second opinion and see what comes from that. I just don't think it will help all my problems but it might help part of it. it is a long recovery though, with much time spent in a hard sling possibly. My masseuse thinks some of the problem is from the mastectomy site which can cause shortening of the muscles combined with the damaged rotator cuff combined with a slight curvature of the spine to result in muscle tension and pain. The only way I can avoid pain seems to be to sit and do nothing which is okay once in a while but not as a daily diet. I also have some discomfort from my mastectomy site, because of the small seroma I have. Apparently there is not much that can be done about that except to open it up again and put in another drain and hope it lays flat this time. The surgeon also always suggests breast reconstruction. I just can't quite handle the thought right now of all these possible surgeries which restrict one for quite some time and, since I live alone, present a challenge just for day-to-day life.

I noticed there haven't been many posts lately, but probably people are busy with vacations, and children out of school and all that sort of thing. I would think many of them will be back with reports!

I am glad you are doing so well, and sending pictures of your beautiful flowers. Greetings to HanTagh and Amanda. Glad to hear radiation is over for Amanda.

Best wishes,

Mary

Honeytagh

Hi Mary

I'm happy to hear from you again and I am really sorry to know that you have lost your dear aunt . I can see how hard time you have had because of this loss and the pain you have been suffering. I hope everything gets better soon. I send you my prayers and positive energy. Try to make yourself as busy as you can as it can help you distract your mind from all the pain and suffering. Try to make as many good and positive friends as you can so that you have less and less time concentrating on what you have gone through.

Love

Hanieh

sylviaexmouthuk

Hello Mary and Hanieh,

I was so glad to see your posts. You are both lovely women.

I shall post in detail tomorrow and do hope we shall be able to keep this thread going. We have no one going through treatment at the moment and no one newly diagnosed. That is good news if we have fewer women diagnosed. The views are still active but the posts are very quiet. It is true it is summer but I do hope our ggreat group of friends will come back to talk to us.

Sending you both fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello maryna8 (Mary),

It was nice to hear from you and I was sorry to read that you have been having a lot of internet connection problems. I think people here in the rural areas have the same problems with internet connections and broadband speed. I think the whole system gets overloaded. I hope you have no further problems.

I was sorry to read that your aunt had died of pancreatic cancer. It is, I believe, one of the hardest cancers to treat and probably to detect. It is so sad that she survived breast cancer all those years and then succumbed to pancreatic cancer. I do wonder whether there may have been a connection. We all know that our very treatment to survive can cause cancers years later.

Here in the UK cancer diagnosis, treatment and survival is apparently very poor. We are behind Europe in all aspects. It seems that our GPs are a bit lax in diagnosing cancer and referring patients to consultants. I think we are all pretty good at knowing how to read our bodies and knowing when something is not quite right. Because of this, I really believe that we should not allow ourselves to be fobbed off by GPs, as they are not specialists. You have to get second opinions and if all else fails go to the A&E.

I was sorry to read that you are still having shoulder pain and I do hope you will be able to avoid surgery. Naturally, those who earn a living as surgeons will be all in favour of surgery, but I think it is something to have as a last resort. Anaesthetic does none of us any good. I do not like the sound of the long recovery that will be necessary for you after the orthopaedic surgeon does his work.

I was interested in what your masseuse said about the problem that you can get after a mastectomy.

If you do not feel like doing anything you now have a good excuse since you have been told that it is the only way to avoid pain.

It is strange that your post appeared at the same time as I was reading an article in one of our papers here about rotator cuff muscle. You might find it on line in the Daily Express July 21^st 2015 under Your Health – Dr Rosemary – Getting to the heart of medical matters. People can write to her and then a related question appears in her column in a question and answer. The question was as follows: "I have had two operations to repair my rotator cuff muscle after a fall. I have been told they have not worked. My consultant has told me about a new procedure called the InSpace Balloon. What is your opinion of it?"

There is quite a long answer about the rotator cuff and injuries and what can happen. The doctor explains that standard treatments for rotator cuff problems include physiotherapy to keep the shoulder mobile and steroid injections to reduce inflammation. She mentions that surgery may be used to repair muscle tears.

She said the following about this new treatment: "The InSpace Balloon is a relatively new treatment where a biodegradable balloon is placed inside the shoulder joint acting as a spacer between the bones.

This allows them to move without rubbing on each other. Research trials suggest that 75% of patients have less pain and improved movement. It does not work for everyone but it may be worth a try.

However, as with all surgical procedures, make sure you discuss the risks with your specialist."

You may want have a look at this and you can go to drrosemaryleonard.co.uk.

She writes an interesting column.

I am not a doctor so I cannot really say much about the seroma. If it were me I would probably try to live with it as I would be hesitant about having the mastectomy site opened up again. You never know what might ensue from that.

As for breast reconstruction, again, it is something that I would not want for myself. I told my consultant before surgery and before she even mentioned reconstruction that it was something I would not want. It looks as though you have some difficult decisions to make. My own belief is to get through cancer treatment as simply as possible and then leave well alone. I sometimes cannot believe all the accounts I read of re-constructive surgery and all the complications. I would not be happy living with implants inside me. All this is very personal and women have to make up their own minds.

I do hope that the strong group we have had will come back as summer wanes, but over the nearly five years that I have been doing this thread, I found that women tend to move on after their treatment. I can understand it in a way that they want to forget all about cancer, but we do need women to stay the course to help and support others, although, at the moment, we have no one going through treatment.

Here in the UK it is the beginning of the six weeks summer holidays for the schools and the colleges and universities broke up ages ago. I sometimes wonder how they get through their courses.

The weather is dry and heavy and we need lots of rain.

That is about all for now.

Fond thoughts.

Sylvia xxxx

I found the link to the article.

http://www.express.co.uk/comment/columnists/dr-rosemary-leonard/592698/Torn-rotator-cuff-and-type-2-diabetes-Doctor-Rosemary-Leonard-answers-your-medical-queries

sylviaexmouthuk

Hello Hanieh,

Thank you for posting to support Mary. I am amazed at your depth of thinking and compassion. You are right about trying to keep busy to keep your mind at rest.

I hope all is well with you.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I am slowly looking back at information I posted in the past. This one comes from February 2011. It has lots of information that I looked at after a post from a wonderful woman called Josephine, who was very informed, worked in a research lab and was very ill with TNBC. I do not know what happened to her.

Cyberknife

http://www.dailymail.co.uk/health/article-1249016/Saved-2m-CyberKnife--coming-NHS.html

http://en.wikipedia.org/wiki/Cyberknife

Gamma knife

http://en.wikipedia.org/wiki/Gamma_knife

Adjuvant Anthracyclines (epirubicin, doxorubicin) - Research about their use in the future.

http://www.cancernetwork.com/display/article/10165/1795372

Can We Abandon Anthracyclines for Early Breast Cancer Patients?

http://www.cancernetwork.com/diplay/article/10165/1795429

Blood-brain barrier BBB

This is a very interesting article.

http://en.wikipedia.org/wiki/Blood-brain_barrier

Triple-Negative Breast Cancer - William D. Foulkes et al

http://www.nejm.org/doi/full/10.1056/NEJMra1001389

Unless you subscribe, you can get only the first page.

Triple Negative Breast Cancer Conference 2011 - The Royal Society, London, 9 - 11 March 2011

Best wishes to all.

Sylvia

Honeytagh

Hi Sylvia and all

Again thanks a lot for all the information you let us know.

After passing all the hardship of the treatments and the anxieties that we have each and every day we should try to keep and strengthen our bonds here. No one else can understand what we have experienced and I hope no one else experience it. We can make true and lifelong friends here. The only thing that we need is to be positive.

Today is the first anniversary of my lumpectomy and I'm going to celebrate it with some of my best friends who knew about my illness. I have arranged a party like a birthday party since I believe I have been born again to lead a completely different life.

l don't know what lies ahead but I prefer to keep my faith in God and hope for the best things to happen. All will die one day ,sooner or later , yet we should try to live our lives to the fullest and enjoy every minute. I try to put everything in the hands of my God and let him relieve all my anxieties. I'm sure by this way we can achieve eternal happiness.

Wish you all the best

Hanieh

maryna8

Hi, Han Tagh

Thanks for your support. I have been keeping very busy, I agree it is the best thing to keep one's mind active. My main obstacle at this time is the pain that comes with activity. I have much in common with Sylvia; I used to do all the grass-cutting, trimming, flower beds etc. and we have a lot of lawn. I can't do it now, and have to have people do it for me except for the flowers, which have become a bit weedy. Most of what I tend now is in pots, which are easily managed. And I have a lot of houseplants, which right now are outside for their summer vacation One of my goals after the cancer and losing my husband is to get myself back into good physical shape, my pain makes that more challenging since I am limited on my activity. I am not overweight but could use more muscle tone.

I have friends, and we go and do whenever possible. I look forward to some trips when things have settled down a bit.

I have seen the pictures of you and your family, what a beautiful family you have! Congratulations and enjoy your "lumpectomy anniversary" party!

Best wishes to you and yours,

Mary

sylviaexmouthuk

Hello Hanieh,

Thank you for your post. I am glad to know that you appreciate the information that I am posting. It makes it all worthwhile.

I do agree that a thread in a forum like this is a good way to form strong bonds as it helps us all to get through all the anxieties that remain with us after our treatment finishes. Unfortunately there are those that benefit from the support of others and then disappear.

It is true that no one else can have experienced what we have been through, so groups like these are very important. It is also a good way to stretch our minds and become educated in the way of life of people from other countries. I also agree that we need to have a positive outlook regarding this disease and a positive outlook on life, even with all the awful things that are happening at the moment and have happened since time began. We must never give up on hope.

Congratulations on the first anniversary of your lumpectomy. It is good to mark that anniversary with some kind of celebration with your best friends. Are you having a birthday cake? Can we look forward to some photographs?

It is true that we all have to die sometime, and our short lives pass very quickly. We definitely have to live life to the full and try not to have any regrets for mistakes made in the past. We just have to live with them, and we cannot know whether something may have been better, if we had taken a different path. I sometimes find it quite entertaining to do this and try to imagine a different life story if I had not made certain decisions. These are my 'what ifs'. One of them is what if I had not come to live in Devon in 2002. would I still have developed breast cancer? My breast consultant told me that the cancer had started when I came to Devon. Do you ever do anything like this?

Thinking of you and sending fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Mary,

I am just popping in to say that I am glad you and Hanieh are corresponding so well.

We certainly seem to share a love of gardening. I have been doing some this morning as well as watering, as we are desperate in Exmouth for some rain. I do love looking at all the plants, and I find gardening so peaceful. It takes my mind off a lot of the unpleasant things we have going on in the UK. I do not like the fact that our National Health Service is so underfunded and that with cancer treatment we have a long way to go. It is unacceptable that we do not have the money to buy up to date radiotherapy machines. There are some out there with so much money but no social conscience. If only they would wake up to the good their money could do for their country, instead of just indulging themselves.

It is a disgrace that we have three million children living in poverty in the UK. That is immoral.

Keep us posted about what happens with your pain and other problems.

Thinking of you and sending best wishes across the pond.

Sylvia xxxx

sylviaexmouthuk

Hello lianli (Lindsay) and Michael,

I have missed both of you on the thread lately.

Lindsay, I was wondering how things went with the rest of the conference that you were attending.

Be sure to let us know if you have any more information from your cancer support centre.

I have a friend here who is starting her cancer treatment on July 29^th. She will be starting with surgery and then radiotherapy.

I was talking to another friend yesterday who was telling me about the suffering of a friend of his who is slowly dying of breast cancer. She has managed to survive about ten years, even had a baby boy, who is now eight, but the cancer spread quite quickly and has been in the brain for a while. Recently she was admitted to a hospice to die, but did not, and so after two weeks they sent her back home. She is now bedridden, cannot see or hear, and is on a morphine pump. I think she has probably had too many different drugs to try to keep her alive and is probably now surviving through sheer determination, but there is no hope so it all seems very cruel.

I do hope that some of the regular posters will come back to us soon. I know that Amanda is on holiday and no doubt a lot of you are, but try to pop in just to say hello and let us know all is fine.

Sending best wishes to everybody.

Sylvia xxxx

Honeytagh

Honeytagh

Honeytagh

Hi Sylvia

Tonight was one of my best nights in life. My friends and I enjoyed it a lot. I had about 20 guests for dinner but thankfully everything went smoothly. We danced a lot, told lots of jokes and had too much fun. I'm really happy to have so many good friends.

Lots of love

Hanieh

adagio

Hanieh - do you celebrate Ramadan? How lovely to have a party with your friends to celebrate your anniversary! The reason I ask about Ramadan is that my daughter is married to a young Persian man who was born in Tehran - his family are quite western now and they do not celebrate Ramadan. Glad you are keeping well, and busy - that is the secret to not dwelling on our situation

Honeytagh

Hi Mary

I'm glad to hear that you are interested in gardening and you have this chance of spending some time with flowers and plants. Unfortunately we live in an apartment with two small gardens that does not give me any chance for gardening as the neighbours have decided to hire one to take care of the building. So try to enjoy it to the fullest ad gardening has a strong healing power. I hope your physical pain gets better soon. Also , I recommend you to read Catherine Ponder' book "The dynamic laws if healing " as I have experienced the strong effects of our mentality on our physical body.

Lots of love

Hanieh

Honeytagh

Hi adagio

As we live in Iran we celebrated the end of Ramadan. I prefer not to miss any chance for celebrating every occasion. However, I wish we did not have to follow The Arabs as we , as Persians, have enough of different occasions in our history and culture to celebrate. Unfortunately, I wish I was born many many years ago before the Islamic revolution or even before the Arabs attaking Iran.

That was interesting to hear that your daughter got married to a young Persian man. I hope he manages to show the real picture of Iranians with all our long history of civilization .

Lots of love

Hanieh

Honeytagh

sylviaexmouthuk

Hello Hanieh,

Thank you for posting the photographs of your lumpectomy first anniversary celebration. I must say that the cake looks really lovely. What does the writing on it say? You and your friends all look very happy and I was glad to know that the evening was one of the best in your life for you. May you have many more in the future.

I was glad to know that everything went smoothly as it must have been a lot of work to have twenty guests for dinner. What are some of your national food dishes? What kind of dancing do you do? I am glad you had a lot of fun. You are lucky to have such good friends as they are not so easy to find in life.

Take care and keep happy. Do you watch much television and what are your favourite programmes?

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello adagio,

It was nice to see you posting on the thread. I do hope all is well with you and your family. How is life post-the weddings and the empty nest syndrome?

What are you doing for the summer in Canada? Last night Raymond and I watched a most interesting nature programme on the television. It was all about the Canadian rain forest in BC and we saw amazing photographs of a white mother bear (called a ghost bear) with her two black cubs. We were intrigued at their behaviour when we saw them catching salmon to eat in the rapids. When we were in BC we did see a mother black bear in the distance and a baby bear in a rubbish bin as we put some rubbish in. we thought it prudent to get back in our car! The scenery in the film last night was so beautiful and we thought it a pity that they are going to be spoiling it to bring in oil.

The news this morning is all about using bisphosphonates on port-menopausal women to prevent breast cancer spreading to the bones. I have heard so many bad things about bisphosphonates which are already used to treat advanced breast cancer, not to mention osteoporosis, that I have some reservations about this. They do cause brittle bones and stop new bone forming and they can cause necrosis of the jaw. Apparently these drugs are now off patent so anyone can manufacture them. Do you have any strong opinions about them? I have always refused to take them for my osteoporosis and both my breast cancer consultant and homoeopathic breast cancer consultant told me how nasty these drugs were ten years ago.

Wishing you all the best.

Sylvia xxxx

Honeytagh

Hi Sylvia

My husband ordered to write " Dear Hanieh Happy Birthday to you " on the top left part of the cake. The was also a piece of a poem written on the cake which in English means" I have heard of no vioce more beautiful than the voice of love, the only memento that remains in this ephemeral world."

Regarding the food, we have lots of delicious traditional food in Iran that I am sure if one day you get the chance to visit us here in Iran you will enjoy it specially my cooking.

Last night I served my guests with some fruit juice, some in season fruit like cherries, apples, nectarines and peaches, tea and cake and for dinner I had ordered some hamburgers which my friends liked.

Our kind of dancing depends on the kind of music. We usually dance Iranian traditional dance . But some of us also dance Turkish, Arabic, hip hop and tango.

I hope to see you one day here in Iran as I'm sure you will enjoy it.

Love you

Hanieh

maryna8

Hi Sylvia

We do share a love of gardening. My husband and I used to plant a very large vegetable garden. I canned lots of things, and froze things and it was all an adventure trying to beat the animals to the ripe produce. When my husband could no longer do the work I continued but the garden kept getting smaller and more manageable. Last summer was the first one in many years I did not plant a garden, the chemo kept me from it. It was also the first year I did not preserve any food, so my canned supplies are running low. It is just me now, so canning large amounts doesn't make a lot of sense anyway, but I like to keep my hand in practice. Lifting the heavy pots of water is a problem now.

I became enamored of flower gardening through a dear friend who died in 2002 of lung cancer. She and I would drive around and look at people's flowers and ooh and ahh. I bought books on perennials and annuals and soon I could name a lot of flowers and tell you what kind of weather it needed to thrive. I planted many, many little plants on our land and an amazingly small number of them survived, it was trial and error and fighting animals that loved to dig them up or eat them! And bugs. But I always enjoyed it. My mother died very young at 38, but I have been told she also had a love of flowers. I remember some of them, but since I was only 7 when she died that sort of thing didn't mean a lot.

Sorry to ramble on, I guess it's a roundabout way of saying I miss being able to do with ease the things I did just 1 1/2 years ago. I do not look forward with pleasure to any surgery, but if it would help my shoulder I would do it. The breast reconstruction is not really on my radar, I know women that have done it and they are happy with results but it's a long ordeal and they have husbands and family that have been very helpful. They are also younger than I! That makes a big difference. The only thing that makes me think of it is if it would help this chronic pain, if indeed it is partially caused by mastectomy. Since reconstruction stretches all that tissue out again. And yes, I have done many, many stretching exercises!

I don't want to sound like a whiner, I am always happy when I am told the pain is not caused by cancer! Life is funny that way, it gives with one hand and takes away with the other. And some of the lessons are hard, but I have to believe there is a reason for it all.

Love the pictures of HanTagh and interesting to hear of the difference she states between the Persians and the Arabs and the rise of the Islamic government. We are hearing so much of Iran in the news but it's really enlightening to hear from someone who lives there.

Concerning the NHS's problems, it seems to me that is usually the problem when the government runs things, they waste so much money that needed programs and equipment go unfunded. Over here we are in a state of flux when it comes to Health Care. We still have private health insurance but it and the medical field are tightly regulated by government. But once one is 65 one is on Medicare, which is government-run and always threatening that they are going to be out of money soon.

It is always distressing to hear of hungry children, three million is a large number. I have to ask, where are their parents? Are they all unemployed? Or underemployed. Over here if the parents make below a certain standard of living, they are eligible to receive money to buy food for their families. Also money for housing, phones and so on. Unfortunately, we have reached a point where there are fewer people working to pay the taxes that pay for the benefits than there are people receiving the benefits. Not a happy equation!

I am curious about the monarchial system. Does the royal family pay taxes? How do they make their money?

Our very hot weather is returning today. We have had a break from it. I am going to the Healthplex with a friend today and having a walk in the air conditioning, having lunch and having a pedicure. I lost some toenails when I had chemo and it is nice to look down and see attractive toes again!

I shall talk to you soon, my friend.

Best wishes,

Mary

adagio

Hi Sylvia, I am keeping OK. My life does seem to be endlessly busy. One would think after my 2 daughters being married, that indeed I would have an empty nest, but circumstances have dictated that my youngest daughter and her husband moved in with us at the end of April - so it has been busy. Plus, my eldest son with his wife and two children (4 and 2) came to stay with us for 10 days. They just left 2 days ago, and my daughter and her husband have also left for Ann Arbor, Michigan - so it is now just my husband and myself - finally! It is so quiet and I am loving it. Now, I have to tackle all the laundry of the bedding and getting out of the mess of having two little ones running around. It has been a very full house with lots of food prep and shopping. It has made me very tired indeed, but I do love them all so much.

I have been having pain in my lower spine since October last year and when I mentioned it to my oncologist, she was not perturbed by it, and assured me that it was not cancer. However, she did agree to an x-ray which I had yesterday, and I will see her again next week and see what she has to say. She did say that if it was cancer, the pain would be unbearable - and while the pain is annoying and nagging - it is certainly bearable. So I sure hope she is correct.

In terms of the biphosphonates for osteoporosis - I have made the decision that I will not take those drugs at this time. My osteoporosis is quite severe, and I do occasionally worry about it and the risk of getting bone mets, since I have read that it is more likely if the bone is porous. It is so hard to make decisions about taking drugs just in case of mets - I am more likely to wait and see if there is metastasis and then decide what to do! Some days, I worry a lot - others, I just have the attitude that what will be, will be. I have to wait one more year for a bone density scan - this is because I refuse the medications. They will only do them once every 3 years. I am hoping that it is no worse and hopefully a bit better since I am taking high doses of Vitamin D.

I have been reading the thread and it is good to hear that everyone is moving on with their lives. I certainly think a lot less about cancer now than I did a year ago, and I see this as a very good sign.

We have had a very hot and dry summer which has put us on severe water restrictions. Today is the first rain in about 3 months, so we are very happy about that!

Take care, and I will try to post more often as I hopefully become a little less busy with family stuff.

linali

Good Morning Sylvia,

The conference was very interesting but intense and I was there for all of it.

Usually there is a little time out but now the union movement are very aware of using the members economically. That meant that a week long event was condensed to 2 1/2 days.

As well as the motions we had addresses by the head of ECTU European confederation of Trade Unions, head of the English TUC and the Welsh TUC, all three are women. A couple of ministers gave speeches. We had very evocative message from a trade union activist imprisoned in Bogata delivered by his Columbian colleagues who also did a fringe presentation.

I attended one where an aid worker skyped from the Gaza strip.

The Palestinian ambassador give a serious but entertaining speech.

All of this was in conjunction with the Congress issues which combined the Unions of the North and South.

The living wage was the theme of the conference and 2 other topics that were very much to the fore were the Water charges and Marriage equality for people in the North.

I must admit that I have been feeling restless since and wanting to be involved in something that would make a difference.

I was hoping that our campaign and petition would be that but that seems to have stalled for now. I am going to talk to the local unions and will meet with my old union secretary who is now a sector organiser for health. I will go from there. There may be a big launch in September but I will be in England for 8 days and may miss it.

I have been a little under the weather..... nothing specific but I didn't go to the centre for tai chi this week.

Recently a couple of lovely women and one man have passed away and it leaves sadness but I feel an underlying sense of fear amongst us too. Natural I suppose when we lose our friends.

I was talking to my friend, an older woman who had a recurrence a couple of years ago and it is TN breast cancer. It was awful the way that it was explained to her and she also was on her own. That is 4 of us 3 older and one in her 30's. I hope the fact that I am 5 years on and I can tell them of you ...10 years on helps relieve some of their fear that was actually made worse by the doctors description of TN and possible outcome.

When will they teach doctors communication skills. I know that Kerry is dealing with a paediatrian who has quite an abrupt manner too. It may be a protection mechanism but it can be very frustrating and distressing for those that they deal with.

We were supposed to be collecting Oskar for a visit but he plans changed and now we will collect Kerry,Oskar and Max next Tuesday instead. It will Kerry good to see her friends as she still has so much talking to do and I find it difficult to help sometimes as I want to find solutions too.

We have a lot to do in the garden as it is looking bedraggled and needs a lot of cutting back and replacement of plants and an enormous amount of weeding. I am hoping that Oskar will help with that.

I hope that you have a good weekend.

Thoughts to everyone.

sylviaexmouthuk

Hello Mary,

I was interested to know all about your gardening. It is quite an adventure to grow one's own vegetables, but I have not had much experience of that. When I was a child, my father had an allotment and I do remember him coming home with lots of green vegetables. We had only a very small garden but we had tomato plants, runner beans and gooseberry bushes.

I think in my family we all have green fingers and I suppose that comes from my father. My two younger brothers are keen gardeners and very good at gardening. I began serious gardening about forty years ago and do not seem to have stopped since then. I cannot believe the amount of gardening I have done since then, not only for me but for my neighbours. I find the physical effort helps me to relax and to experience a sense of mental peace. Of course, here in Exmouth, the grounds to the apartment complex are big, but we do have a gardener who comes in to cut the grass and do heavy pruning. He has become a friend and I write instructions to him every two weeks. I do a lot of fine tuning in between and prune, weed, hoe and plant. I did a lot of gardening in Canada, when we bought a bungalow in Ottawa, Ontario and really had to start from scratch. It was always amazing to see the garden come to life after months of snow and ice.

It looks as though you definitely have gardening in your blood. It sounds as though you had a lovely time with your friend when she was alive.

I was so sorry to read that your mother died very young at just 38 and you were only 7. that must have been a very difficult time for you.

I can understand how you miss being unable to do the things that you used to be able to do just 1 ½ years ago. Just try to pace yourself and do little things that bring enjoyment.

I can understand that you do not look forward to surgery but will do it if it will help your shoulder. I think these are hard decisions to make, but sometimes we just have to make them. Life can be very wearing with constant pain. Be sure to let us know what you decide to do.

As I have said, reconstruction is something that I consider to be quite problematic and with all the cutting about I would be very concerned about what could be stirred up in the process. You can never be sure of the results. For me I would not want silicone implants inside of me.

It is true that it is interesting to have Hanieh on our thread. She has deep thoughts and a lot to say. As you say, there is a lot of news about Iran at the moment but we probably know next to nothing about the country, Persia, Persian culture and how the ordinary people live. We only know what we get from the media and we have some very awful newspapers here in the UK.

I do think that the creation of the NHS was one of our proudest moments here. Of course, it was created in 1948 after the postwar landslide Labour victory under Clement Atlee. That victory also brought in the creation of the welfare state, which I also think was one of our proudest moments. The Labour government has done so much since then but it all gets forgotten and goes unappreciated. When the NHS was created we had a much smaller population, none of the expensive scans and equipment and none of the expensive drugs. There may be waste, but, most of all, it is seriously underfunded and I think abused by patients and doctors. Because it is free at the point of service, people go around saying that it is free, but of course it is paid out of our taxes. Doctors dish out pills like there is no tomorrow and people make too many unnecessary visits to the doctors. We all need to cherish our NHS and treat it with respect. I fear that under the present government they will destroy the NHS. Labour needs to get back to its roots of taking care of people from the cradle to the grave. The party went into the wilderness under Tony Blair and his cronies and look at them now. They are all rolling in money, living the high life and could not care less about ordinary people and their struggles.

I am glad to know that people over 65 in the US are taken care of through Medicare and that people in need receive money to feed themselves. I think that helping to maintain a phone and a roof over one's head is vital and humane.

I am totally against the monarchial system that we have in this country and I cannot believe that we still have it in the 21^st century. It is feudal. The Royal Family had never paid taxes over the centuries, but recently the Queen consented to pay some token tax, but it will be next to nothing. We are being kept in the dark about it and a lot of other thing as well. They should not be allowed to live in the opulence that they do. The country seems to be in awe of them but I think they are a slap in the face to ordinary people. The Monarchy should be legislated away and we should be a Republic with an elected President who is also Head of State. I doubt that I shall see true democracy in this country in my lifetime. The Royals make their money from land that they own, which they stole from the people centuries ago. The rest they sponge from the state and there are a lot of members in this family.

We had a lot of rain here yesterday and it was needed. I hope the grass will start becoming green again soon.

I do hope you had a good day yesterday. Raymond and I went into town today to get a bit of shopping. It was so busy with lots of tourists. I was glad to get away. We went away from the town to our favourite garden centre and had some lunch there in peace and quiet. We are now back home and catching up on various things.

Thinking of you and hoping everything will work out so that you are pain free.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Hanieh,

I just wanted to say that I loved the words that you had written on your cake.

I was interested in what you had to eat. I love all of the fruits you mentioned, but my favourites are cherries and apricots. We have an abundance of British fruit here at the moment, so we are eating blackberries, blackcurrants, redcurrants, raspberries, strawberries and blueberries. I must be getting a lot of valuable antioxidants. There are also plenty of British cherries.

I was interested in the various dances that you do.

Thinking of you and sending best wishes.

Sylvia xxxx

sylviaexmouthuk

Hello adagio and linali (Lindsay),

It was so nice to hear from both of you. I am going to take a break, but I shall reply later on. I have just typed a letter to our managing agent here, outlining what we need to be doing next week. I followed this by a detailed letter to the gardener outlining the work to be done on his next visit. I then turned my attention to the thread and have done two posts, so I just need a bit of a rest.

I have just noticed a new e-mail from Chris Woollams, which I need to have a look at.

Raymond and I have been inundated with e-mails from several candidates for the Labour leadership and the deputy leadership of the Labour party. Both of us are supporting Jeremy Corbyn for leader. The rest are useless. We have not made up our mind about the deputy.

Exmouth is very busy, everyone seems to be on the loose and there are loads of foreign students from the language school here.

Talk to you soon.

Fond thoughts.

Sylvia xxxx