Calling all triple negative breast cancer patients in the UK
Comments
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Hanieh - such pretty girls - is that a school uniform that they are wearing? I understand your worries about your daughter - but she will be fine, and things will become clear for you and your family as time goes on. Wishing you as good as possible weekend with your family - rest lots and take it easy so that your body can recover in between your treatments.
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thanks adagio
I just have to learn to breathe I think! Shoulder settling and was the one I had previously dislocated so I think I’m
Going to have problems with lots of achy bits post chemo. Joints remain fairly stiff and the peripheral neuropathy still there even feel it around the outer aspect of my knee some days. I can handle all of that it’s just the fear I hate! I some times wish I wasn’t a nurse and then I wouldn’t look for worst case scenario in everything
Cheers
Kath
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Hi, Kath
I don't think it makes any difference whether or not you're a nurse when it comes to worrying, I am guilty of that too, and I daresay all of us have our worry times. I have neuropathy too, and started having knee pain about a year ago after doing some exercises I apparently shouldn't have been doing. Knee has since been diagnosed with arthritis under kneecap and meniscus tears. Pain is not like arthritic pain, does not get better with movement but gets worse. The pain is sharp in the knee, and it swells, and often it's burning pain that starts over the knee and runs down shin a little bit. I have tried cortisone shots, last one didn't work. They mentioned a nerve block, do you know of anyone that has had a nerve block shot in the knee?
It sounds like you manage to get a lot done anyway, sometimes I think being busy is the best thing. And then at night it's hot pads and ice packs.
Mary
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Hello Mary,
Thank you for your post on the previous page, in which you were mentioning the film about Churchill that you had recently seen. It has had quite a bit of publicity here. It was released into the cinemas here just a few days ago. I do not know whether people are queueing up to see it.
Raymond and I stopped going to the cinema a long time ago. We just did not enjoy the crowded noisy cinema rooms with people talking loudly, mobile phones going off, and people munching away. Are we anti-social or other people?
I think we have had too many films about WWII and I think we get fed up with hearing about the 'spirit of the blitz'. That disappeared a long time ago in this country. We are not great fans of Churchill. We have seen quite a few actors portraying him.
This country is in such a mess and the present government are making such a mess of Brexit. The establishment, the government and parliament are determined to go against the will of the people and there is now a lot of talk about a second referendum.
When the powers that be are not talking about reversing Brexit they are still having a go at Donald Trump.
We should be concentrating on the NHS, funding our state school system and building affordable housing.
I find that on the thread comments on valuable pieces of information are not forthcoming, such as bacteria as a cause of cancer and the fact that there are several biomes in the human body, including the breast.
The news headline the past few days has been about breast cancer and the BRCA genes and how there is no difference in survival between those women with BRCA genes and those without it who have double mastectomies. I just heard the news on the radio and television but have not done any detailed research so far. I was surprised that the doctor on television kept talking about how these people were 'cured'. Of course I do not know whether there was any breaking up of the different kinds of breast cancers or between hormonal and non-hormonal etc. I am just wondering whether too much unnecessary drastic surgery is being performed.
I have been reading a brand new book entitled The Dental Diet by Dr. Steven Lin – the surprising link between your teeth, real food and life changing natural health. It is very interesting. It establishes that there is a biome in the mouth and the link between that being compromised by the modern processed diet and all the problems with tooth decay, loss of teeth, gum disease and so forth. It is highly readable and credible. It was only published this week. I ordered it at once because I have felt for a long time that my gum disease could be at the heart of everything that has happened to me. There is so much gum disease, inflammation and chronic illness in the western world that seems to be attributable to the western diet. Can you believe that there are 600,000 food items available, 70% of which are processed.
I hope you are having an enjoyable weekend.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post and for the most interesting photographs.
You are quite right when you say that both of us will not conform or compromise when we think that something is not right. For you, you have to be careful because it can be very dangerous in your present circumstances. Gradually things must change. In this country ordinary people have had to fight for everything that they want. Those in control will not grant it benevolently. Look at the struggle we had for women to get the vote. Look at the struggle for workers to have unions to protect workers' rights. We are now living in a politically correct society in the UK and some of it is getting very petty.
Whether you will see what you want in your lifetime, I do not know. Sometimes things go backward. I do not think that I shall see in my own country, the things that I want to see.
You mentioned about shaving your head. It is too late to regret it. I never shaved mine and I did not cut it short either. I just let it fall out naturally and I never was completely bald. I had a little bit of hair. I did not shave it because I thought it might damage the roots. I used to wash my head in baby shampoo and mix in pure organic avocado oil. It is the one oil that can be mixed with water. Concentrate on eating healthily to get your hair back. Do the same to strengthen your immune system when you have finished chemotherapy. Tell yourself that you are going to get back to normal.
It is very sad for your young daughter to have to cover herself like that. It must be very difficult as she grows up and how through the internet she sees the difference in other countries.
It seems strange that you cannot edit your profile and add your treatment that you had first time around. I do not know it is to do with your mobile phone. I do not use one. I do everything on a laptop.
Keep on being clever. We must all keep our grey cells working and think for ourselves.
Love.
Sylvia xxxx
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Hello Hanieh,
To change or add treatments you need to go to My Profile and then go to My Treatments and then click on Add a New Treatment.
Your first treatments were AC, doxorubicin (Adriamycin) and cyclophosphomide (Cytoxan).
Hope this helps.
Love.
Sylvia xxxx
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HI, Sylvia
I feel much as you do about movies, I only go to a theatre about once every 2-3 years. The theatre we attended last week is very small, in the back of a bakery if you can believe that. It only seats about 40-48 people I think. We had not been there before and it was enjoyable. Nobody was sitting next to us, we were quite alone in a row. Everyone there behaved and didn't talk or have a ringing phone. We could buy food in the bakery and bring it in with us if we wanted.
I think the interest in movies and documentaries about WWII is fading, as the population ages and dies. There are probably very young people who don't know anything about it. I think it is important to remember it, so it never happens again. I think war is perennial, which we can see as we read the news, but WWII was an enormous undertaking started by the megolomania and insanity of one man, Hitler.
My husband was very interested in WWII, and that is why I learned a lot about it. We must have watched every documentary on the subject on the History Channel, even more while we were both ill. As I said, I have seen most of the movies as well because of watching with him, I think most of his interest came because he was in the military service for some years, and his father served in WWII, a Marine in the Philippines. I have admiration for Churchill in the War Years, I think he is a good example of a man whose destiny was to do exactly what he did. I am aware that after the War he was gotten rid of, and not popular for very long. He was probably not meant to be a peacetime leader, the people spoke and he faded into history. Of course, I do not have the personal knowledge of events as you do. I had 4 uncles who served and they all came home in one piece. This is all only my experience, and my opinion.
I have read articles recently about research on BC and survival times, I'm afraid some of it just makes me feel as if we are all just numbers in a calculator, and I agree, too many of the episodes on the TV shows just lump all BC together.
Don't lose heart because there are not many comments on the articles you post, I think most people are just busy with their lives and/or treating the disease. You are a teacher at heart, and you are a very good one. Just have faith that people are probably reading the links and taking it in, but it does take time to respond fully. It's interesting that Hanieh is also a teacher, and Marias has a strong streak of that too. I myself read the posts but don't always comment, I was very interested in Dr. Hamer and his unusual theory. I was also personally interested in the articles on lymphedema you have posted, it's something we all may have in our future. I also read with interest what you posted about varicose veins. I have varicose veins, and have had ankle problems since chemo. I had one leg treated with injection before I was diagnosed with BC, and now both ankles tend to swell if seated too long, or standing too long. They are painful most of the time, and the chemo is all I can pin it on. I had no such problem before treatment. Your post on the subject tells me it is indeed an issue. And I think probably every area of the body has a biome after reading the post on that subject, the human body is amazing.
I also had gum disease for many years, and about 35 years ago I finally met a dentist who cleaned up my mouth. I agree, it can cause so many problems. I know there is a big connection between heart-health and one's oral health and as you say, the health of the entire body. It sounds like a very interesting book, I would like to read it.
We have very cold weather, and I am having a very quiet weekend. It's okay, but sometimes a bit lonely.
I'll talk to you again soon, love
Mary
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Hi Hanieh,
Thanks for filling me in on how your second case of BC was found. I can see how you feel bad about how you were treated by your Doctors. I feel that way about my previous MO too sometimes, but the past is past and we have to go on as we are. I'm glad that now you have a Doctor who is taking it seriously. I'm just so sorry that you are having to go through this again, a positive thing is that your lymph nodes were found to be clear. I take that as a very good sign.
I'm also glad you are still finding inspiration and enjoyment from the sermons of Joel Osteen. I think the idea of being inter-denominational is getting to be a big idea, with people of any faith all together.
The pictures of your daughter in school are so interesting, she looks very happy and absorbed.
I don't think shaving your head will hurt anything, I had mine shaved when it was starting to come out so I wouldn't have a mess in the shower drain. Your hair will come back, you have very thick hair!
Yes, you are very intelligent and clever!
Love to you and yours,
Mary
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hi Mary
I've had two cortisone shots in this shoulderas well a couple of years ago so I'm not surprised it's sore. Have heard of nerve blocks but don't know anyone that's had them. Have u had an arthroscopy on that knee?
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Hi, Kath
I have not had arthroscopy, the surgeon did mention it once, I think they are trying to experiment with other things first. They are thinking that the neuropathy might be part of the knee pain, thus the burning pain which isn't common with arthritis. That is also why they think the nerve block might be helpful. The swelling in the knee I suppose is part of the arthritic response. It is hard to tell what's what, that's for sure. My quads are also weak, but it's hard to exercise them properly because of knee pain. I had MRI which diagnosed the meniscus problems.
Thanks Kath! Mary
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Hello Mary,
Thank you for your latest post. It was interesting to read about your cinema at the back of a bakery.
I agree about war. It will never stop. I think we need to keep an eye on the EU. It is so dictatorial and has ambitions that I do not like, such as a European army, compulsory Euro for all members, a European tax system, a European policy on all wars and no member can disagree and open borders for everyone. Those in charge of all of this have not been elected and are just a group of bullies.
There is more and more talk of a second referendum.
I think you are right about being numbers in a calculator. The news we get about breast cancer or any other cancer is too brief and too sensationalistic. It is also simplistic.
I really do believe in integrated medicine and I think it is good that orthodox medicine is not completely damming alternative medicine, complementary, homoeopathic etc.
I was interested to know that you found Dr Hamer and his theory interesting. I found myself agreeing with what he said and I do believe that the physical and the psychological are connected. To me it is common sense that psychological upsets will affect your body physically. I have become very good at reading my own body. Although I got through all my treatment quite easily, I realise that the long term side effects have taken a toll on the right side of my body, where I had the surgery. Everything now seems to happen on that side. I am coping well with the lymphoedema, and wearing the class 2 compression sleeve that I was given, but I do find it tight and I feel more tired that I used to. I was at the podiatrist's on Friday and she said she noticed that the circulation was weaker in my right foot. It was not like that before, despite the neuropathy, but I have noticed that since the lymphoedema I have started to form a varicose vein on the right leg. When I have my appointment I am going to ask about this. I read that varicose veins can cause lymphoedema, but I want to know whether lymphoedema can cause varicose veins.
The surgery on my arm has healed up nicely and I shall be glad to get the result. I want to find books to read on both peripheral neuropathy and varicose veins, in particular with reference to cancer treatment. I trust books more than the internet.
I am sure you would be very interested in the book on gum disease and poor teeth with reference to our modern diet. It is true that with gum disease you are very vulnerable to heart disease.
I thought of you last week as I know you like history. There was a two or three part series on Lady Jane Grey and how she was briefly queen and then executed. She was just a very young girl and the victim of plots. I did not get to see it and hope it will be repeated.
Last night I watched a programme about all that went on as WWII approached, with George VI and spying on the Duke of Windsor and Wallis Simpson. They were so badly treated and yet today there would have been no problem.
There was also a programme about Queen Victoria and a young Muslim who came over as a servant really and made his way up. Again, there was all the courtiers conspiring against him because he was of the 'lower' orders. They were awful to him when Victoria died. I think she had a lot of spunk.
All this information that is now coming out makes me realise how much is hidden from the population.
That is about all for now. I do appreciate all your posts and the great effort you put in on the thread.
Love.
Sylvia xxxx
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Hello Mary,
I was browsing through the forum a week or so ago, and I saw a reference to a SANCUSO patch for anti-nausea during chemotherapy. Have you heard of it? I know that the US is always in advance of the UK in these things. I thought I would ask because it is important for everyone to keep up to date on these things.
Fond thoughts.
Sylvia xxxx
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Happy Sunday Everyone,
I've been reading along, and trying to look into the links when I can. But I don't always have time to do that, and when I'm not at a regular computer, I only read. I take in what I can, and I definitely believe that the physical and the psychological are connected. Finally, I agree with Mary, it does take time to respond fully. I'm not often able to do that. So Sylvia, I hope you don't get too discouraged about the information you post. Feedback or not, this thread is an incredible resource.
Hanieh and Marias, I'm thinking about you both, and following along with your posts. The discussions about history, independence, and ingenuity have been really interesting. I hope you're feeling well today.
Sylvia, we traveled to Morocco for a short time in 2000, and did not have a good experience. We were "locally hosted," rather than with a tour group, which we've done successfully all over the world - with guides that we arranged via a travel company ahead of time. Most of those guides worked hard to get us into high-pressure sales situations - like the classic rug merchant trap. Our train trip, I believe from Fes to Marrakech, was almost comical in the number and persistence of multi-lingual touts that came at us until we played stupid. They finally gave up. In Tangier a tout actually got into a taxi with us. It was relentless and frustrating. We try to be very sensitive to local cultures, to learn about customs and phrases ahead of time, and to do our best not to stand out or look flashy. We don't travel to shop, because we can't afford to. But we felt like we unintentionally broadcast an image of wealth and naivete - like targets. And we were in fact naive.
To paraphrase, one merchant told us that we had the disposable income to get there, and so we must have the funds to buy whatever he was selling. I could see the extreme poverty, so he certainly had a point, but the approach was much too aggressive in general. We didn't buy much, but I learned a lot about bargaining there before the trip was over.
The other problem we had is that I am the arranger of travel. I have all of the information and details, but no matter how carefully and respectfully I would try to ask or answer questions, the (almost entirely male) people we talked to would only speak to my husband. And it was Ramadan, which didn't help the situation. Anyway, all of this to say that I would love to hear whatever you are willing to share about having a deeper experience living and working there as a woman. I wanted to go there for years before we went, and I'm sure there's more to the story that what we experienced.
Cheers,
Pam
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Hi Mary
often an arthroscopy is used to clean and repair meniscus tears. A nerve block may help with the pain but I think the scope may help to get rid of the problem. Might be worth a chat with your ortho specialist to discuss the pros and cons
Cheers
Kat
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Gina,
I was Tnbc in 2015 and they did not give me tamoxifen. I wish they would have because two years later my cancer is back in the lymph nodes but now 90% ER positive. Now I’m doing chemo again and then if that works surgery and radiation again. I had my ovaries removed last month so I won’t get tamoxifen, the doc says he will put me on Femara after my treatments.. I often wonder if i would have pushed to be put on tamoxifen, would I still be cancer free:
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Hi, Sylvia
I had not heard of the SANCUSO patch given to prevent nausea, I Googled it and found it is a trans-dermal patch given primarily to people who have trouble taking the pills that are normally given for this purpose. One patch can have effect for months. I read on because I was interested to see if perhaps it did not cause constipation as the pills do. But I found that constipation is the main side effect. Other than that, it seems to be an effective way to deliver the anti-nausea drugs instead of taking handfuls of pills.
Our old friend Chris Woollams is back! I had not thought of him, but after seeing his post I realized we hadn't received a newsletter from him in months, I am glad to see him again, I browsed the titles and read a little, it is mostly recaps of subjects he finds are critically important.
I did find Dr. Hamer's theory very interesting, and I did read a lot of what was on the website Marias linked. I learned that there is still an protege of his who practices in Germany, and I think she travels all over the world treating people with this method. I would like to see some stats on the actual success of this practice. I read a lot of the testimonials, but I never know whether to believe them.
There is another thing I have in common with you, and that is the fact that I had mastectomy and lymph node surgery on my right side and that side is where most of my problems are now. Starting with my shoulder and muscle injury right side, which started during chemo after surgery. Carpal tunnel right side wrist and arm, my hands are always cold and the right one is always colder. Moving down to legs, affected by neuropathy, painful knees and the right one is worse. Painful ankles, and the right one is the worst. And of course the feet, always cold and affected by the CIPN. (chemo-induced peripheral neuropathy). I have had varicose veins all my life, I'm sure it is genetic. After I had the injections in my legs I was told to wear the expensive support hose, they recommend wearing them at all times except while sleeping, but I rebelled and wore them if I would be standing a lot or flying. However, my favorite kind was the thigh-high style, and since having the chemotherapy, the band at the top that holds them up makes my legs break out in an itchy rash so I can no longer wear them. I bought a pair of the full-length support hose, but the top is so tight I can't bear them. I was measured and it's the proper size, and I am normal weight, I just can't stand to wear them. If I could wear them it would possibly make my legs feel better, I don't know.
So for me, another long-term side effect after treatment seems to be extra-sensitive skin. I am also positive my sense of smell is stronger. I can no longer tolerate perfumes or candles, and I had a lot of candles from before.
You are right, I would like to see the program about Lady Jane Grey, do you know the name of it by any chance?
Learning about royalty in general makes me wonder why anyone in those days would want to be a king or queen, so many of them came to gruesome ends, In the movie I saw last week "The Darkest Hour", it depicted George VI as at first going along with Neville Chamberlain who wanted diplomatic relations with Germany. He then decided Churchill's plan to stay the course was the better one, and he also decided not to flee with his family to Canada for safety, but stayed in England throughout the War. There is another pretty good movie about him (George VI), called "The King's Speech". It is all about how he had to conquer his speech difficulties to be able to give rousing speeches and rally the British people during the dark days. There is now a major movie out about Queen Victoria and her Muslim servant, I have not seen it. Is that what you saw? Or was it a documentary that you were referring to? Queen Victoria must have had a lot of spunk, she stayed alive and on the throne for a long time, as did Elizabeth I, and Elizabeth II has been there a long time too. Of course nowadays the queens have much more sophisticated security, but probably there is still behind-the-scenes intrigue going on that we don't know about. Royalty is not what it used to be though, they don't seem to have much power, just lots of wealth.
I"m glad your arm has healed up well, and it hasn't seemed to bother the lymphedema. When you will get the result?
We have had a little snow, things look a bit nicer with the snow but it's still very cold, with a biting wind.
I'll talk to you again soon, thanks for your kind words.
Love, Mary
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Hello Pam,
Thank you for your post and for your kind words.
I was interested to know that you travelled to Morocco for a short time in 2000.
I think my experiences as a person living there for three years and employed by the French Ministry of Education, would have been very different to that of tourists on holiday. I was in the southern part of Morocco in a small town called Ksar-es-Souk, now called Errachida. I taught in a lycée English as a second language. It was a very enriching experience teaching mostly boys 14 to 18. I only had four girls. They all had a thirst for knowledge.
I went on regular visits to Meknes and the capital Rabat. I also visited Marrakech and Fez.
If you are a tourist you are almost bound to get pursued by merchants trying to sell their wares. This is a poor country and trying to sell carpets etc. is a way of getting some money. You are expected to haggle and this can be a bit of fun. I was told never to accept the first price. If you are in tourist places, like the Medina in Fez or the famous square in Marrakech, you will be pursued. You take no notice. There will be children begging but they are harmless.
Of course, in my everyday life in Ksar-es-Souk I could walk to school with no problems. I was very frightened when they had the military coup.
I was in Morocco from 1969 to 1972, so things might be very different now. School ended at the end of May when it was getting unbearably hot and I would be back in France and the UK until the next term began.
I do not think I would like to go back there now, as I would not feel safe. It was a very good experience and I was with other teachers, Moroccans and French mainly. I managed to see quite a bit of Morocco as it is a small country.
We have to remember that westerners, will always be seen as wealthy in these countries where there is so much poverty.
You have to remember that countries like Morocco are very patriarchal. I think it will take a long time for this to change. I had no problem as a female teacher and no problem with my mainly male students. I have very fond memories of them and especially of the four girls. I think one of those girls became a teacher of English at the school I was at.
Ramadan is quite difficult time, I would think, for students as they are trying to study and keep awake when they are fasting and then up at night feasting.
I hope this helps.
I do look forward to your regular posts.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I shall answer in more detail tomorrow, but I wanted to say that you always have something interesting to say.
What I saw on the television about Victoria and the Muslim servant was a documentary of about an hour and not a film. I found it intriguing and took a liking to the Muslim servant who worked his way up. I did not like the courtiers one bit and thought the way they treated that loyal young man after Victoria's death was appalling, but as you know, I do not support the idea of monarchy and people being called Royal! You are lucky to have a republic.
That same evening I saw another interesting documentary about how badly treated the Duke of Windsor was and Wallis Simpson. They were both spied on forever after he abdicated. What a lot of nonsense all that was.
I have seen the film The King's Speech.
I shall write more tomorrow and I shall try to find out the title of those episodes about Lady Jane Grey.
I think there is still rivalry among the royals of today. Will it be Charles or will it be William? I hope it will be a President.
Love.
Sylvia xxxx
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Hi Pam
Thank you for your kind words. I wish you all the best. Your post about your travelling to Morocco was really interesting to me. I always love travelling to see other cultures and learn about how people in different parts of the world live. But seeing poverty is the last thing I would like to see. Poverty is what can exist in every part of the world. But the difference is the number of the people that live in poverty in each country.
Last night there was a program on BBC Persian about how the Chinese lifted from the state of poverty to wealth and how it can compete the US in near future in economic growth.
Love
Hanieh
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Hi Sylvia
Thank you so much for all your informative posts. Sorry if I can not state my opinion or express my appreciation about them all. Sometimes it's really hard for me to catch up with all the posts. All my life is hectic with housework, teaching, dealing with my daughter who is a teenage now, studying for my classes, checking my students assignments not to mention the number of the days I'm down with the mental and physical and sideffects of this disease and all the treatment.
I just wish to keep hope in my heart that things will go well and I will recover.
Waiting to hear your good news
Love
Hanieh
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Hello Everyone,
Hanieh, We definitely share a desire to learn about other cultures. I call it my humble "school of travel," and I think it's so essential to get out of our comfort zone to find out about other ways of living. It can sometimes be about connecting with others, and about witnessing the community that exists in spite of the lack of material wealth. Sometimes the lessons are uncomfortable. I know that I had a very romanticized view of Morocco before I went, but I'm glad that I went.
Sylvia, Thank you for sharing your experience living and teaching in Ksar-es-Souk, which is now Errachida. We hired a driver to take us to Ouarzazate from Marrakech, and on a map it looks like the distance from Ouarzazate to Errachida is a little more than the distance that we traveled that day. Looking at pictures of Errachida reminds me of the landscape and sights that we saw. Our driver liked Blues music, and was fasting during that very long day. I've never forgotten him.
I can imagine that you were very afraid during that coup, and that it took a lot of courage to live in another culture to begin with. I always encourage students to do that if they can. From your experience, it sounds like it was very rewarding, and well worth it.
I was aware that the country was patriarchal, but the painful lesson was how completely it would impact our trip, and how relatively lucky I am to live where I can be outspoken and (mostly) heard. As you say, change takes a long time. And we are ridiculously privileged to be able to afford to do these things at all. I will say that we've visited places where there was poverty, but where there was a more gentle approach to getting travelers to part with their money.
Today is a holiday. I had a chiropractic adjustment, and I'm on the way to yoga, so I should sleep well tonight. I also tried a recipe that I thought was clever: 4-ingredient banana pancakes:
https://www.livestrong.com/recipes/easy-banana-oat...
You can add honey, syrup, or just berries to them when they're done. The next time I make them, I'll add lemon juice to thin the batter, and lemon zest.
I hope everyone is having a good day,
Pam
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Hello Mary,
I am continuing from yesterday. I have just printed out the first email of the year from Chris Woollams, but I have not yet had time to read it.
As for Dr Hamer, I think he makes a lot of sense. To me psychological illness and physical illness must be intertwined. It makes sense to carry out whole body treatment and not just separate parts of the body. With cancer it is a systemic illness and not just the part where the tumour decides to settle. We need a life that is much less stressful than the western hectic pace of life and worry that most of us have. Worry does not do our bodies any good.
We have to make up our own minds what we want to believe. I do not take any notice of statistics. Statistics can prove anything a person wants to. There is far too much brainwashing going on anyway.
I think that with our breast cancer treatment, even if the initial journey was not too bad, we are left with irritating long term side effects and a body very much changed from what it was before treatment. I am not really convinced about the compression sleeve that I am wearing. I have been told I need class 2 but I find the sleeve very tight and I am going to question this class 2 at my next appointment. It seems to make me feel a bit light headed and I am concerned that it may be doing something to my circulation and oxygen. I have a class 1 sleeve that was given to me while waiting for class 2. it is much more comfortable. I find with both sleeves the swelling goes down and then it comes back when the sleeve is removed. I suppose this is what the experts mean by lymphoedema being a chronic state. I have also found that a varicose vein is now forming on my right leg so I want to ask about that. I also think that my left arm is now much drier than it was. Who knows what goes on?
You certainly seem to have had a chain of problems after treatment.
I shall probably end up just deciding to treat the lymphoedema with exercise.
As for Lady Jane Grey, I am posting a link for it in the hope you will be able to get it.
I think the so-called royals have an easy time today and they have put themselves in the same category as celebrities and act in the same way. I do not see them going into battle when our politicians take us to war. That is very different from Richard and the Crusades, Henry V and the battle of Agincourt, or Elizabeth and the Spanish Armada.
Today the news is all about Carillion going into liquidation and the Rohingya Muslims who have been chased out of Myanmar. I just wish our hopeless government would get on with settling Brexit once and for all. I just feel they are going to renege on it all. What do they care about the will and the sovereignty of the people?
It looks as though in the group we are all very busy. I can understand how hectic it must be for those going to work and especially for those working and going through treatment. I am not working but it is a full time job being a director here. I find the days just seem to disappear and I am either doing director work or doing the thread. I try to keep up my reading as well and keep informed about current affairs. I am keen to get on with that excellent book, the Dental Diet. It is so interesting.
Yesterday I watched a BBC Panorama programme about Donald Trump one year on. I did enjoy the interviews with just ordinary people and most of his supporters are still very impressed with him. They seemed to be in the mid-west and I found the people very down to earth.
We have a little bit of sunshine here today.
That is about all.
Love.
Sylvia xxxx
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Hello Pam and Hanieh,
Thank you for your posts. You always have something of interest to say.
I shall reply tomorrow.
Love.
Sylvia xxxx
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Hello Hanieh,
I do understand how you have to be careful what you say about certain things.
I can understand that it is difficult for you to keep up with the posts. It is difficult enough going through chemotherapy and you are trying to do so much in addition with your teaching work, housework, studying and looking after your teenage daughter.
You can only do your best and must give priority to taking care of yourself through your treatment.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Pam,
I agree with what you said to Hanieh about stepping out of our comfort zone to learn about and experience other cultures. I am sure you are not alone in having had or still having a romanticised view of Morocco before actually going there.
I can tell you that, back in 1969, I had really no idea what to think about Morocco. At that time I went through France and Spain by car, going from the department of Correze, where I was teaching, through to Toulouse in the department of Haute Garonne and on to Spain. From there right across Spain to Malaga and by boat to Tangiers. In Tangiers it was a complete culture shock and a change of civilisation to me. I found Tangiers pretty scary. From there it was on to the University in Rabat, a short information course and then on to the long drive to Ksar-es-Souk (Errachida). It was shock all the way.
Ouarzazate is a very popular tourist place. I do remember going from Ksar-es-Souk to Marrakech. It was a long drive through the Atlas mountains.
In your post you mention students. Can you remind me what you do as a career?
Your recipe for banana pancakes sounds interesting.
Did you do anything special for your Federal Holiday?
I hope you are having a good week.
Love.
Sylvia xxxx
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Hello everyone,
I found a little book in a discount bookshop in Sidmouth, that caught my attention. It is entitled HAPPY – 50 MINDFULNESS AND RELAXATION EXERCISES TO BOOST YOUR MOOD EVERY DAY by Dr. Arlene K Unger. It is a new book 2017 by Apple Press.
I was interested in the introduction:
"We all want to feel content and we spend a large part of our lives in the pursuit of happiness. We look for work that fulfils us, partners who cherish us, families that support and nurture us and friends that make us laugh. Or do we? Perhaps surprisingly, our lifestyles and our actions often suggest that we do not strive for happiness above all, but instead sacrifice feeling happy for other goals, such as making money, gaining social status, and avoiding negatives, such as discomfort or boredom."
The author goes on to develop this idea.
To summarise, she says that, at least in the developed world, there is more potential for individual happiness than ever before, so we should, in theory, be happier. However, many of us do not feel like that. Even if people are materially alright, they feel that they have little time for leisure and are not really happy. The fact is that modern life is stressful.
She thinks that although we are connected by technology, we are disconnected from nature and that friendships although more widespread are more superficial. She thinks that we are disconnected from our work as they are controlled by multinational corporations, and we do not see the result of our work.
The result of this is a general decline in our mental health and with the result that more than three quarters of the visits we make to doctors are stress-related.
She goes on to do a 'happiness' score, 1, 2, 3, and states what is supposed to be a happy life, according to psychologists.
1. Pleasure: doing things for sheer enjoyment.
2. Meaning: feeling that our lives are worthwhile and that we make a difference.
3. Engagement: being connected to friends, family and our communities.
The point of all this is to look at the list 1, 2, 3, and see what your score is out of 10 for each number. You can then work out where you have to make some changes.
I thought you might find this interesting, as I know you all like to think about things, and I hope this will be therapeutic and a good way of having a rest from breast cancer thoughts.
Hoping you are all having a good week.
Best wishes.
Sylvia xxxx
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HI, Sylvia
There is a lot to go through in the latest Woollams post, recaps but good stuff. The first part deals with 6 things to make chemo perhaps work better. I will write about the first one listed because it may be of interest to anyone dealing with lymphedema, as well as cancer treatment.
1. Go for Hyperbaric Oxygen Therapy (HBOT). This is about a method of delivering more oxygenation to the body, which is supposed to be very good in the treatment of cancer. Finding this treatment is dependent on where you are, I think. For example, where I live there is one place over an hour's drive away that offers this. This place in my area is not in a Cancer Care clinic, but in a holistic doctor's office. I have not tried it, but I have read about its' benefits, this article talks about its' use in conjunction with conventional therapies, chemotherapy and radiation, and also about its' use with alternative therapies.
Lymphoedema
"There is also evidence that HBOT may help people with lymphoedema following breast cancer and lymph nodule surgery. Quite simply, oxygen therapy aids healing and patients in research talk of reduced swelling and less pain, with a softening of the damaged tissue."
The article is lengthy, with much information. Sylvia, perhaps you would be interested in this as it seems it can be used for lymphedema therapy.
The article goes on to talk about the benefits of turmeric, melatonin, calorie restriction, moderate exercise and Whole Body Hypothermia, and using them during cancer treatments for the lessening of side effects and better outcomes.
If anyone would like me to link anything I mentioned I can do that, I know that Sylvia and I receive Woollams' post in our inbox, but don't know about anyone else who does.
There are many more articles in this post, too many to write about here, but very interesting reading. Much of it is a recap of things we have heard before, but it's good to be reminded.
I found Dr. Hamer's website very interesting too, he has a whole section just on breast cancer, and his theories of why it forms and how it can resolve itself. Apparently he was another Doctor who was hounded and humiliated because he dared to think outside the box. Funny, since the medical world that denigrates him has no good answers themselves! In the end, we are the pawns who are left to fend for ourselves basically, to try to figure out how to navigate this new experience.
Sylvia, we both talked about the right sides of our bodies being more afflicted with problems, apparently that is also part of Dr. Hamer's theories, being right-handed or left-handed will affect the areas of diseases, and the part of the brain affected. Dr. Hamer's theory on Cancer would also explain why people who are seemingly healthy often get afflicted with it while people who are not all that healthy do not. Although, his theory applies to other diseases as well.
I was able to open the link you sent on Jane Grey, but the programmes are only available in UK, can't get them here. Too bad!
No, I can't see the current-day royals fighting in battle, although I think Prince Harry was in the Army for a while, and I think served in Afghanistan, not sure what he did there.
The days do go by so fast, sometimes it seems they are filled with trivial matters but still things that must be done. I find most of my book-reading now is at night when I go to bed, but I fall asleep rather quickly these days.
One year on Donald Trump has actually pushed through a lot of what he said he would do on policy, we don't hear much about it because the media is obsessed with what he said on Twitter, or how many ice creams he had. Sometimes I think he is a Master of Distraction, he does something silly and away the media goes, and then behind the scenes he is doing what he wants to do. Yesterday the Official Presidential Doctor came out with a medical report on a battery of tests Trump undertook, and apparently Trump came through it all very well, especially for an overweight 71 year-old man who eats mostly fast food (cheeseburgers) and drinks Diet Cokes. He did a Cognitive Test as well, and passed that. The media is now trying to figure out how the Doctor did the tests wrong, as they were sure Trump was crazy and at death's door. It's actually rather funny.
It does sound as though Brexit will get shoved on down the road into oblivion, not sure what can be done in the current state of affairs. It is frustrating for those who went and cast an honest vote to feel their voice is ignored. It happens all too often here as well.
I will talk to you again soon, love,
Mary
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Hello everyone. I thnk the fatigue is really settling in, five weeks after finishing radiation. Yesterday, I was so exhausted all day and was in bed by 8:00 p.m. and something very rare for me happened; I slept 12 hours, just getting up once during the night, and right back to sleep! I still feel tired today, but not so much that it keeps from doing anything. I sure hope it's not going to be a long term thing.
I think of you all in your little spot and hope that things will continue or begin to go better for all of you.
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Hello Mary,
Thank you for your post. I did read through Chris Woollams' email today before I saw that you had posted. There is a lot of repetition, but as he says, he is really recapping the most important news items from 2017.
I did know about HBOT with reference to lymphoedema but I shall reread it. I do not have any pain or hardening or any problem really. I shall probably do my own thing and deal with it through exercise, as I did back in 2006. I think that with all cancer treatment able to cause lymphoedema through damaging the lymph system, it cannot be repaired.
I think most of what he has to say I already know. I have been following him since I was first diagnosed back in 2005. What was of interest to me was that Chris said that he liked the American Cancer Society because they pay attention to complementary therapies. I firmly believe that the future lies with integrated cancer treatment and somehow getting away from too much surgery, chemotherapy and radiotherapy. All three seem to do too much damage.
I was very interested to know from Sarah that her mother is lucky enough to be at a hospital where there is a homoeopathic clinic and where the orthodox oncologist is happy to work with the homoeopath and is quite amenable to Iscador, which is a cancer treatment used in Germany. I had oral Iscador for five years from diagnosis, through treatment and after treatment. I think we all have to decide what we want to do.
I think we need to leave people to sign up to Chris Woollams if they want to. We have mentioned it often enough and we must leave them to decide. There is a whole load of information on health in the Cancer Active website. I am sure a two hour interview with Chris Woollams on a person's personal health problems, cancer or others, would be most useful. I wonder how much it would cost?
I have an open mind and will read anything that I think might be helpful. By the way, with reference to Dr Hamer, I am left handed.
I was sorry to read that you could not get Jane Grey. Raymond says that you should get a VPN on your computer so that you can seem to be somewhere else, like the UK. Then you could see the episodes.
It is true that the days go fast and yet they are often monotonous. I have to laugh sometimes listening to the BBC news on the radio or on the television. It is so selective. I am still listening to Nigel Farage on LBC four evenings a week and two hours on Sunday morning. Whatever you think of him, he is a great communicator, highly informed and very entertaining. I do not think he should have stood down as leader of his party and it looks as though UKIP is finished. The new leader is in trouble because he left his wife for a very young woman and she has been in trouble for tweeting that Harry Windsor's girlfriend will taint the royal family. That leader has now ditched the girlfriend! I think Nigel did wrong to tell people to vote Conservative in the last election instead of UKIP to keep Labour out. I am fed up with the whole lot of them and think we need completely new parties.
I have also been listening to all the news about Donald Trump and his latest medical. It is unbelievable the way the media keep going on.
I think he quite enjoys leading the media up the garden path with what he says, but I still do not understand why he would want to put up with all this hassle.
That is about all for today.
Love.
Sylvia xxxx
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Hi Sylvia,
I'm just taking a quick break to get back to you about your post. In 1969, I was an infant while you were traveling through France, Spain, and Morocco. When I finally went to Morocco myself, I also found Tangier/Tangiers scary, and being there was one of our most profound culture shocks. (That was in spite of the fact that I had researched quite a lot, even reading a book called, Culture Shock, Morocco). I remember a street full of men walking toward us, wearing djellabas, and that it felt like participating in a scene from the Bible. It was similar in the Medina, in Fez. And as I said, I thought that even the culture shock experience was valuable.
I'm a Budget Analyst/Office Manager in a department of a state university, and I supervise student employees. If I had children, these students would be about the same age. I am not exactly the "Mommy" type, but it's really rewarding to help them with their professional and emotional development.
During our holiday, I saw The Shape of Water with some friends, which I liked, but it was a little too long. I would have waited to see it at home had they not asked. I took my Dad out for a birthday dinner, and went out for sushi on another day with my husband. I took a couple of yoga classes and went to the chiropractor. It was low key, and I enjoyed it. My radiation treatments began a year ago, and I still need at least one full day every week to rest.
I enjoyed your post about the new book. We really are sacrificing happiness if we're not very intentional about how we spend our time and energy. I thought the "happiness score" you described was as good a tool as any to be proactive about that. It's all about quality of life, as we've discussed before. So much collective wisdom these days is telling us to get out into nature to improve our mood, to find work that allows us to see the results of our efforts, to stay as socially engaged as possible, and to make sure that we occupy ourselves in meaningful activity.
I once had the opportunity to hear Mihaly Csikzentmihalyi give a presentation about the psychological concept of "flow," which has some similarities in terms of engagement, and I was fascinated with these ideas for years before that. These are also some of the tips I've read about aging well.
I hope we're all as comfortable and as happy as we can be today,
Pam
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