Calling all triple negative breast cancer patients in the UK
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Hi Everyone !
I have alot of catching up to do as i have yet to read everyones posts from the new year till now !
Please wish my mumma good luck and good vibes she starts her first round of EC tomorrow. Really trying to keep it together for her sake!
Hope everyone is well
Kindest,
Sarah xx
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Hi, Sarah
I will be thinking of your Mum today as she starts her treatment. I think you have both done your homework and my wish for her is to get through it all with smoothly and with great results. And then to be done with it and get on with life.
You are certainly a great help to her, and I'm sure she appreciates all your care.
Talk to you soon, love
Mary
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Thank you for your kind words Mary ! We really appreciate it !
She starts in an hour ! will let you know how she gets on !
Kindest,
Sarah
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Hello Sarah,
Thank you for your latest post and I do hope you will manage to catch up. You probably have too much on your mind at the moment.
I shall be thinking of you and your mother today as the chemotherapy finally begins. Just try to deal with the session in a relaxed manner. Once your mother is comfortably seated and the pump has been hooked up, it is best to be as relaxed as possible and let the pump do its work. Make sure you are seated comfortably as well. It brings back a lot of memories to me. My husband and I just used to sit through it all by talking quietly about all sorts of things. Sometimes we sat and had a bit of lunch while it was going on. I had EC, just like your mother, and I had three months of it with no ill effects. My hair started to fall out after the second session.
Just make sure that your mother keeps well hydrated, rests as much as she needs and keep looking forward.
If I were going through it today, I would probably drink quite a lot of pure coconut water, as it is excellent for hydration and contains the electrolytes that you need. If not, stick to lots of water.
Wishing you and your mother all the best. You can do this.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I do agree that Tangiers is quite a scary place. I have no idea what it is like now. I do not think any advanced preparation can deal with it. I do remember a visit to the Medina in Fez. That was quite an experience as well. There will always be culture shock in Medinas compared to the European parts of the towns and cities, because they are living in a time warp as far as we are concerned. They are still dressed as people would have been dressed in biblical times and medieval times. They are 600 years behind us in our time calculation, so just think back to what it was like in medieval UK.
As you say, the culture shock experience is valuable, but perhaps not at the time it is happening to you.
Your work sounds very interesting and I am sure that mixing with younger people will keep you young at heart.
It sounds as though you had an enjoyable but busy time for your national holiday.
I was glad to know you enjoyed the happiness score.
Reading parts of the book is quite an eye opener about all that is wrong with our modern life. This week on the BBC News there has been a lot of talk about all the lonely people in the UK. A figure of nine million was given. People can go for days without having anyone to speak to. It is a sad reflection of our modern life. Families are scattered far and wide.
I am quoting the following from the little book, Happiness.
"Ten Happy Habits to Adopt.
"Happy people appreciate the present moment rather than spending all their time in the past or future. Here are ten ways to be happier.
1. Surround yourself with other happy people.
2. Prioritise activities that make you feel good.
3. Take responsibility for your own happiness and do not blame others when things go wrong.
4. Get enough sleep, eat well and exercise regularly.
5. Forgive yourself when you slip up.
6. Take pleasure in the small things.
7. Do not compare yourself to other people, but welcome the success of others.
8. Get out into nature regularly.
9. Be resilient when setbacks occur.
10. Give to others through kindness, compliments and donations."
How do you think you do on all of this?.
Wishing you a good weekend.
Love.
Sylvia xxxx
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Hello everyone,
Another week is coming to an end. I find I am counting the days until Spring.
Cancer, especially breast cancer, has been in the news quite a bit this past week.
It was mentioned that 140 women a day in the UK are diagnosed with breast cancer. That is shocking and proves that something is seriously wrong.
It was also mentioned that a woman here had been treated for her breast cancer by having a magnetic marker inserted alongside her small tumour, so that the surgeon could locate the tumour more easily and not have to remove as much of the healthy tissue.
There are trials to be set up about this.
Also in the news was the proposal that all women over the age of 30 should be tested for signs for both breast cancer and ovarian cancer. I do not know what follows from that if a person is positive for these damaged genes. I did not get the details of all this, so I do not know whether is a proposal to test all women over 30 genetically for faulty genes.
In the Daily Mirror today there is news about a universal blood test to trace some cancers. The link is:
https://www.mirror.co.uk/science/doctors-take-critical-step-towards-11876517
If any of you have any information about all of this, please post in for the benefit of all.
Hello to Mary, adagio, Hanieh, Marias, 53Nancy, Kathseward, Lou, Sarah, Kathy28A.
We still have no news from Valstim, Rhonda and 4everStrong.
Have a good weekend all of you.
Best wishes.
Sylvia xxxx
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Hi everyone !
Just to update - today went by very well. Im very proud of mum, before she started her chemo she stalled a good hour or so it was bit of a mess but then she settled in. Poor thing was just really nervous and anxious. The minute she put on her cold cap, she just went into super mum mode and just powered through the day like a super star !
The first 10 mins of the cold cap was a little uncomfortable but very bearable she says, i was SHOCKED because i had a feeling she was going to throw it off after 2 mins but she really just pushed through and had it on through out the day ! It didn't effect her body temp what so ever in fact she felt a little too warm sometimes but i think that was probably the EC.
She kept the cool cap on for an additional 15 mins after her 90 mins of cool capping was over.
We are home now, little nausea kicked in but i gave her 4 drops of CBD oil and she's feeling much better - she's trying not to cram too many chemicals in her body and keep it as holistic as possible. She rested a little and is up now making dinner because "she got bored sitting in bed" ! so all in all today went very well. Hoping she keeps it up the coming days.
Thank you all for you kind wishes ! Grateful for all of you!
Sylvia - I am super keen to know who writes this book. Seems like a very good read.
Kindest,
Sarah
xx
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looks like the chemo kicked in. think she out for the night. she just got super foggy and said didn't feel right and is going to try to sleep. the light was bothering her she became sensitive to it since we got home !
xx
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loveabdligh88, so glad everything went well for your mum. All the best to both of you
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Hello Sarah,
I was glad to know that all has gone well with your mother for the first infusion.
Make sure she keeps hydrated, rests as she feels necessary and keeps looking forward with determination.
It is good that she tolerated the cold cap well. It will be helpful for others to know that.
It is good to know that the CBD oil helped her. I keep hearing a lot about it and people asking about it when I am in my natural food shop in Exmouth.
The little book I found quite by chance is entitled Happy – 50 mindfulness and relaxation exercises to boost your mood every day, by Dr Arlene K Unger and is 2017.
I do not know if you have caught up with the posts for this year yet, but I think you would probably find the monthly emails from Cancer Active quite interesting. You can sign up for it for free on the Cancer Active site. Some of us here read it regularly. The last one was dated January 14th 2018 and I have been having a look at it. This email is really more like a magazine and Chris Woollams is really picking out the ten most important news items of last year.
it just so happens that the first item on the email is 1. Six ways to make your chemo work better.
You need to click on Article – Six ways to improve your chemo success and reduce side effects.
Briefly, the six ways are listed as
1. Go for hyperbaric oxygen.
2. Moderate exercise.
3. Eat 15% fewer calories than you need.
4. Look into whole-body hyperthermia.
5. Supplement with curcumin.
6. Supplement with melatonin.
Please remember I am only printing what I have read and these are not my own ideas.
I do believe in moderate exercise and I know that women often say just a quiet walk does them a lot of good.
I do eat natural turmeric, which gives me my curcumin. I buy the natural fresh turmeric in a small greengrocer store in Exmouth or in the natural food store here. I just wash it and cut it into small pieces and cook it in the pressure cooker I have with sliced carrots, sweet potatoes and often some fresh root ginger.
Remember, ginger and lemon tea, gingernut biscuits and ginger capsules are all good for nausea and sickness.
Fond thoughts.
Sylvia xxxx
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Hello Everyone,
Sylvia, I'm not surprised to hear about the lonely people in the UK. I know that one of the factors that I'm looking for in the next place that I live is a sense of community. With all of the wealth of our countries, I think there is a fundamental lack there.
To answer your question about the "Happy Habits," listed in the book that you are reading, the main one that strikes me is the "take responsibility for your own happiness, and do not blame others when things go wrong." I think that one covers a lot of ground, and can be very empowering. My mission lately has been to stop complaining and take action about things. I won't always be successful, but at least I can be satisfied that I tried. So far it means that I write letters and speak up more. I try to stay in the moment, stay healthy, and give back. I struggle with self-forgiveness, and comparing myself to others, but I think I'm very emotionally resilient. How about you?
I started Weight Watchers last week, and am a little whiny due to the low-carb adjustment period. I know it will be worth it, though. It's such a cliche' to do these things in January, but there it is!
Sarah, I'm glad to hear that your mother's treatment went well.
How is everyone else doing today?
Love,
Pam
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Hello Pam,
Thank you for your post.
I do understand what you mean about, if you move again, you will be looking for a place with a sense of community. It is something that is lacking in today's society in the west. I think one of the reasons is that families are now scattered far and wide. With higher education their children have moved all over the world and we do not have extended families any more. I was brought up with grandparents, aunts and uncles and cousins all very close. I know that here in the UK lots of the elderly have their children in the US, Canada, Australia and New Zealand.
I was very interested in your comments about Happy Habits. I think you are right about a person taking responsibility for their own happiness. Other people cannot make us happy but, also, we cannot always blame ourselves for unhappiness. Life can be very difficult, unpredictable and unfair and can throw unhappiness at us. Somehow we have to deal with that and not let unhappiness possess us. I think we just have to take moments of happiness and not expect it to be a permanent state. Unhappiness should not be a permanent state either.
I do believe in speaking up and writing letters. I find it is quite difficult in this country to do that today, because we are drowning in political correctness. I have written quite a lot of letters during my life and been quite outspoken. I think that is getting more and more dangerous here. I think admiring nature is very relaxing and good for us all. I think all of us cancer patients have been resilient coping with our diagnosis and not letting cancer take over our lives.
I do like to be kind to people and to pay compliments and give donations to worthwhile charities.
I wish you every success with your Weight Watchers diet, but remember to have some carbohydrate vegetables because you need them for energy. It is white bread, white rice and processed pasta along with cakes and biscuits that are bad.
I do appreciate your regular postings.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
The thread is very quiet so I suppose everyone is busy.
I have been wondering what is going on with Marias and Hanieh. We are always concerned when we do not hear from them but we know they are going through treatment and this can be very taxing.
I have been carefully reading that latest email from Cancer Active, with reference to chemotherapy which is such a large chunk of treatment, and also the importance of vitamin D at all times and especially when going through chemotherapy.
I have read that chemotherapy drugs can deplete vitamin D levels to dangerously low levels in the bodies of cancer patients, causing severe vitamin deficiency., at a time when vitamin D is needed.
In the latest email there is a lot of information about vitamin D and the important role that it plays.
If you are interested then you can go to the Cancer Active website. I was interested in the details 1 to 6 about vitamin D and cancer. Number 6 states vitamin D shown to be important in triple negative breast cancer.
Please remember I am just quoting what I am reading.
I do take about 5,000 IU myself and I take vitamin D from Solgar supplements and have been taking these ever since diagnosis.
That is about all for now.
Best wishes.
Sylvia xxxx
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Hi, Sylvia
I have been absent a little while, I've been a bit under the weather. I still don't feel the best, still have a sore throat and persistent headache, and a very stuffy head. Our weather has gone from very cold, to very changeable. One day will be 60+F, and the next will drop down to below 30F. It seems to be easier for me to be susceptible to things in this kind of weather, I actually feel better when it's bitterly cold and consistent.
In looking back over your posts to me, you were talking about Chris Woollams and that his latest post is mostly recapping subjects. I don't mind that, sometimes I can use a reminder. I have not checked out the price of his Personal Prescriptions service, I would imagine it's quite pricey but I will check it out sometime. If I can, I notice his Vitamin Supplements are not sold to the US.
Please tell Raymond I appreciate the advice about the VPNs, but I will probably pass on it. I did check it out a bit, and see there are many apps I can get for my phone for a price. I have access to more things now than I ever have time to look at, so not really in the market at this moment. Also I am not as "techy" as is your Raymond.
As for Dr. Hamer's theory and your left-handedness, his theory covers all that. Apparently it all has to do with different parts of the brain, and different influences in early life causing different sorts of cancer.
I was looking at your post where you mentioned the book you found about Happiness. I too think that happiness comes in moments, when we appreciate and savor the sheer enjoyment of life. This is such a wonderful feeling that we seek it always, in a perfect world everyone would be happy and have enough and not be distracted by sickness, aches and pains, and worries.
Your post which had the link to the post on the new tests for different cancers was interesting. But after the testing, then what? I'm sure these new tests would lead to more tests and then some kind of powerful drug treatment. I agree with you, prevention would be the best, but how do we really do that if we don't know the cause? Western diet? Herbicides and pesticides? Hormone supplements? Contaminated water? The air we breathe? And then what, if we succeed in overcoming all these elements aligned against us; is it only to be tucked into a nursing home as we live on into our nineties? Okay, enough. I can tell I don't feel well, I am going into a gloomy place, perhaps I should get back onto the Happiness subject!
I also hope that Hanieh and Marias are getting through everything in good shape, they certainly have had a lot to deal with.
I am glad the lymphedema is not causing you the more severe symptoms, I hope it stays that way or better, goes into remission.
I will talk to you again soon, love,
Mary
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Hello Mary,
I have missed you on the thread and I was sorry to read today that you have been feeling under the weather. I do hope you will feel better soon.
Everyone I speak to seems to be below par and fed up with the miserable weather and finding winter too long. We do not have your cold but it seeks as though it has not stopped raining all through January and the damp chills the bones. We have also had a lot of gales. The ups and downs of weather do not seem to do us any good.
Like you, I quite like the idea of Chris Woollams recapping important information from 2017. It helps us to remember all this information. I read very carefully all about chemotherapy and wish it could be done away with, as it is so toxic. The new ones, relatively speaking, the taxanes, seem to be worse than the 'old' ones such as doxorubicin, epirubicin, cyclophosphomide, and fluorouracil, and they were bad enough. I also read carefully all about vitamin D and its great importance.
I was interested to know that the vitamin supplements from Cancer Active are not sold in the US.
I gave your message to Raymond to make him laugh. I am not techy either and think that technology is going overboard.
I do print anything I find about cancer and breast cancer in particular, but I do not pay that much attention to new drugs or trials. I think the cause of cancer is all the accumulated aspects of our modern lifestyle and that it is hard to avoid. I think you would be most interested in that book, the Dental Diet, it is one of the most interesting books I have read in a long time. I have been reading about modern dental problems and how they all began after man the hunter period, with the advent of the agricultural revolution. There was a great deterioration in dental health at that time and another one with the advent of the industrial revolution. Diet in those periods became more processed and the bacteria in our gut was not the mixed and good one that it used to be. I was most interested in reading about the microbiome in our mouths and the interaction with the microbiome in our gut. The bad bacteria seem to have taken over. In addition, over time, man went away from fermented foods to processed ones. Apparently we need those fermented foods. I have simplified things but I know you will get the gist. I think, more and more, that my health problems come from my gum problems! Of course, there is always stress as well.
As you say, who wants to be tucked away in a nursing home and live on into our nineties? I certainly do not want that.
I have been visiting a friend of mine who has metastatic cancer of a different kind, and was taken into hospital just before Christmas. She has had all kinds of drugs but they just made her feel more and more ill. She is now in a nursing home, hooked up to morphine and barely able to eat. To me it is so sad to see her and I would not want it for me.
I can understand that you are feeling a bit down. I get like that too and I have to give myself a shake. I think it is good to have a little look at that little book entitled Happy. The ten happy habits to adopt make sense. I find it quite difficult to surround myself with happy people. I think the UK is not full of happy people at the moment. The establishment is fine and they could not care less about people going through impossible times. I watched Parliament today and found it a complete farce except for Jeremy Corbyn demanding that something be done to save our NHS.
I do hope we hear from Marias and Hanieh soon and that they are getting on alright. There are only about ten of us active on this thread now. That includes Lou, but she also seems to have disappeared.
That is all for today.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
I forgot to mention that a videoconference is beginning tomorrow January 25th about vaccines. It is Ty Bolinger. It will be in the middle of the night here so I shall not be able to watch it. Will you be watching it?
Love.
Sylvia xxxx
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Hi Sylvia !
I think vitamin D has a big connection with breast cancer. For instance, I am originally middle eastern, and even though it is very hot and sunny in the middle east, we have a very high rate of vitamin d deficiency. That being said, we also have an increasingly high rate of breast cancer too, and according to research there if a definite link there.
My mum has been preaching to us for years about the importance vitamin D and i never took it seriously until one day i was just depleted of energy and my joints were in so much pain for months couldn't figure out what was wrong, i had blood works done to find out i was severely deficient at level 2 ! i had to have 100,000 IU shots and was on 10,000 IU supplements for 3 months. Made the biggest difference in the world. So i can only imagine how imperative it is to have a high vitamin D level count during chemo to keep energy and any joint pain away. Like you Sylvia my mum takes solgar 5000 IU everyday ! ( i just re started taking it )
Hi Pam!
Thank you for your kind words. My mum is feeling a little run down today, the effects of her steroid pills have worn off and she has flu like symptoms, I spoke to her nurse and she said the steroid pills she took for two days after the chemo was to keep her every levels up and once she's off them on day 4 she will have a little crash, so I think thats whats happening now. Gosh I really hope this gets easier, its very difficult seeing a strong and usually upbeat individual in this state. Praying that infusion 2 and 3 of EC don't knock her down more than this. Is taxol a little easier / less harsher?
Hi Mary,
I hope you're feeling better. The weather here has been bipolar too, it went from freezing cold and snow/rain/slush whatever mix of it to spring like weather all in a span of 3 days ! Keep warm and hydrated ! sending you positive vibes your way
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Sylvia I just read that you take curcumin ! When momma wakes up il ask her for her recipe she makes this fresh cuurcumin water concoction which she swears by ! will share it with you when she's up xxx
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Hello Sylvia, Mary, Sara and all
Sara, my best wishes go to you and your dear mom. I hope everything goes well with you both as I know ursing a chemo patient can be quite difficult.
Sylvia, I hope things go well with you too. Sorry I can not post quite often.
Yesterday was my 3rd chemo session. I'm a bit down. Maybe it's because my doctor told me I should have another brain MRI after the finish of my chemo sessions as TN has a tendency to metastasize to brain. Though I already knew about it, hearing it again depressed me. I don't know what to expect but I would prefer to think things get better.
My friend and I in our 3rd chemo session.
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Hello Mary and Pam
I'm sorry to hear you weren't feeling well. I hope by now you have felt better.
It's my persistent habit to wake my daughter up with some kisses every morning. But today after waking her up, I saw she has cold symptoms. I hope I haven't caught it.
Pam, I was interested in your post about happiness. I usually try to keep happy even in adverse situations. Yet, the days after chem everything seems more difficult than usual. I m waiting for my spirits back.
Wish you everlasting happiness.
I had lunch right now and I think I need a deep sleep. Talk to you soon.
Love
Hanieh
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Hi, Sylvia
I didn't know about the Ty Bollinger videoconference, but I am signed up for it now. Not sure how much I will see, it comes on at 8:00 PM here, I will probably have it on and go in and out for it. Usually when these things are on they will replay at another time too, since he has interested people all over the globe. It is free to sign up, then they send you a link for access. I did hear quite a bit about the vaccine subject when I went to the first symposium. I also have the DVDs from that symposium and his second one too, which I haven't yet watched, which include several speakers on vaccines. I also get a post from a site aimed at Medical Docs every day, it is interesting to read the polar-opposite opinions about all the vaccines, the docs think there is no harm. Although they have no real answers about the high incidence of autism, asthma, allergies etc. in children nowadays. When it comes to small children, it is dumbfounding how many different shots they are subjected to before they ever go to school.
I think I am going to order the "Dental Diet" book, it is the one by Dr. Stephen Lin, correct? I have been interested in the correlation between dental health and health in general, since I found a good dentist many years ago who got my mouth back into shape, I had one tooth pulled a couple years ago because the other option was root canal, it doesn't show but I don't really want to lose any more, and I don't want root canals. I already have several of the old fillings. It sounds like Dr. Lin really ties together dental health and a whole-body approach.
Vitamin D is also very important to bone health, I think maybe even more after the chemotherapy. Since it is so important to bone health, it's probably also very important to teeth. I guess the truth is everything works together and the thing is to try our best to have everything working together well.
I'm sorry about your friend who has metastatic cancer and is in a nursing home. These places can be downers to visit, I have been telling myself to get to our local nursing home, I have an elderly aunt there. She is 93, and has 10 children, so has lots of company. She is not very ill, just can't be alone at home because of walking difficulties and some health problems which require frequent doctor visits. Since the doc stops there every day, that works out for them. I know quite a few people there. It makes me sad though, because most of them had to go through a period when they did not want to be there, and couldn't understand why they couldn't be home on their own as always. Then they get resigned to it, and get into the routine of the place. The place has 2 sides, one side has private rooms, and the other is for the people who have more serious illness or dementia and have to be confined, thus requiring more nursing care.
My other living aunt lives in an assisted living facility a couple of hours away, she is quite happy there, and gets around well with her walker. She lives with many people who are retired clergy as she is, and so has a lot of like-minded friends. She has a private room and is invariably in high spirits, and is a pleasure to visit. She lived her life as a nun with minimal possessions, and is happy now with even fewer of them. She is also in her 90s.
I have been hearing not-so-good things about the state of the NHS on our news, about very ill people lying in corridors for days because of no empty rooms, and not enough staff to take care of them. My niece is a nurse in a hospital here, and she said while they are not to that yet, they are quite understaffed and the nurses are given more patients on their shift than they can properly care for. She said when new nurses start, they are so overwhelmed with all their duties that they usually don't stay long. It's best to stay out of hospitals if you possibly can! I do know the NHS affects all your health services in UK, it does seem that when you were starting with BC treatment that you got really good care, but that was 12 years ago. Congratulations on that once again!
I'm off for now, talk soon, love,
Mary
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Hi, Hanieh
Good to hear from you, glad things are moving along okay. I would say it is normal to feel a bit down, since your body is tired from the drugs it is processing. You still look pretty as ever, your friend is looking quite tired, I hope she is bearing things okay. I'm so glad you have someone to visit with there.
Sorry to hear your daughter is feeling under the weather. These ill feelings seem to be everywhere in the world, I'm glad you are careful not to catch anything from her.
I also had a Brain MRI after chemo, and it was clear. I think it's a normal thing to check with TNBC, I was told the same thing. I asked my General Practitioner how I would know if a headache was a brain tumor, he says it would be like the worst headache you ever had.
Hanieh, take care and keep putting one foot in front of the other, I think of you often and wish you good health!
Talk soon, love,
Mary
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Hi, Sarah
You are certainly taking good care of your mum. It sounds like she is proceeding normally through the chemo, it has a cumulative effect so will build up over time unfortunately. She seems to have a really good nutritive foundation, that will only help. I really lost my appetite with chemo and didn't eat much, and learned later on during treatment that chemo can zap muscle tissue along with a lot of other things. I'm sure I was not taking in enough protein along with a lot of other things missing in my diet.
The steroid pills we are given with infusions are very strong, I didn't like them because they made me constipated and unable to sleep. But sometimes yes, I would feel a bit more energetic.
Bi-polar is a very good word for our weather! Today promises to be warm again, after 3 cold windy days. Almost everyone is very tired of it, and wants hot weather. I am not a fan of hot weather, but I like spring-like weather, and if it could be somewhat stable that would be nice. There are places in the world that have that kind of weather, but many of them also have hurricanes and other things, like a much higher cost of living. I guess everything is a balancing act.
Best wishes to you and your mum!
Talk soon, love,
Mary
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Hello Sarah,
Thank you for your latest post. It does seem that there is a link between vitamin D deficiency, or even low vitamin D, and breast cancer. We have to remember that vitamin D is not a vitamin, it is a hormone. I do not know why it is still called a vitamin if that is the case. It will not be the only cause. I think that breast cancer is multi-causal and has a lot of risk factors.
Vitamin D is very much in the news everywhere now and I think more and more people are asking for blood tests to get their vitamin D levels. It is not easy to get it from diet and we all need to get a little sunshine whenever we can, but we do not need to stay in the sunshine for hours on end and get burnt. I have read we need about 20 minutes of sunshine a day and that it is best to do this in the middle of the day. With our English climate we need to supplement most of the time. I do not believe in sunblock as it is just made up of chemicals and if you put it on all the time you will not be getting any vitamin D.
I was interested to know that your mum is taking Solgar vitamin D 5,000 IUs every day. I have been taking Solgar vitamin D for a long time but the last time I tried to get them they were not available, so I am now taking Solgar vitamin D 4,000 IU which was all I could find. I make it up by taking extra ones and also get it from a multivitamin and mineral that I take from Holland and Barratt, as well as Solgar bone support calcium supplements with vitamin D, magnesium and vitamin K2. Apparently it is important to have the K2 but not without consulting your GP if you are on anticoagulants such as warfarin or aspirin.
How is your mother getting on?
I was interested to know that you are originally from a middle eastern country. I would be interested to know which one. I am very interested in the geography of the world.
The other thing that is getting a lot of publicity is the gut and how we have to keep it healthy in order to try to keep in good health. Do you or your mother eat much in the way of fermented foods? I eat sauerkraut, tempeh, and plain soy yoghurt with live culture (Sojade) to keep the gut healthy. I keep reading that our modern western diet full of processed foods has changed the microbiome make up of our gut and that this causes inflammation in the body and eventually leads to the chronic diseases that are so current in the world.
Sending you best wishes.
Sylvia xxxx
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Hello again, Sarah,
I have just noticed what you said to Pam about your mum.
The first few days are always the worst. Off the medication, steroids etc., she should start to pick up. Let her sleep if she wants. Rest always helps the immine system. Make sure she drinks plenty of water and if she can coconut water, which is excellent for hydration and contains electrolytes. I buy Innocent brand.
You mentioned curcumin. What I buy is fresh turmeric from the local greengrocer here. I wash it, cut it a bit and cook it with carrots. I often add bits of fresh ginger root. I do not buy the powder form of turmeric because I read the body does not absorb it. You can get curcumin supplements at Holland and Barratt but I would think the fresh turmeric root is better.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post and your photographs. Thank you for making the effort when you are going through chemotherapy.
I was glad to know that you have got through your third chemotherapy session. Keep looking forward and it will soon be over.
I was sorry to read that you are feeling a bit down.
I think it was a bit heartless of your doctor to mention having another brain MRI after you finish your chemotherapy sessions. You have enough going on in your mind trying to get through these difficult chemotherapy sessions without talk of what can happen with TN.
It just goes to show that unless a person has been through chemotherapy and cancer treatment in general, they do not have a clue about what it does to your body and the fear and anxiety that you go through. It is all very well to have knowledge of symptoms and side effects, but a whole different matter to actually experience it. You are a brave young woman and you are doing this for the second time and you need to be encouraged to get through to the end of your treatment. Just concentrate on getting through each day and keep your optimism and hope. Try to do things that make you laugh.
The other evening on the television I watched a programme about beautiful gardens in different parts of the world. It was presented by a famous gardener here, named Monty Dom. He was in Morocco and Iran and was showing the most beautiful vibrant gardens, known as Paradise Gardens. In Iran we saw families having picnics in the parks. They would put down a carpet, gather on it, have some nice food and enjoy themselves. It was wonderful to watch. I think there is another programme again this week, which I hope to watch.
I am fine, but not looking forward to Monday to find out about the mole.
As for the lymphoedema, on the same arm, I am really doing self care. My appointment for this was on Tuesday but was changed. I am now not going for a check up until March 7th. That gives me six weeks to work on my arm.
Thinking of you and your friend as you go through treatment. When is your next session?
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I am going to take a break but hope to answer your post later on.
Love.
Sylvia xxxx
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Hello Mary,
I do hope you get to see the Ty Bollinger videoconference and that you will be able to give us a rough idea about what is going on. I am interested in all vaccines but especially any to do with flu and any to do with cancer treatment. I think we all need to be informed.
I am sure you will not be disappointed in the book about which I have been posting entitled The Dental Diet – The surprising link between your teeth, real food and life-changing natural health, by Dr Steven Lin, Foreword by Mark Hyman, MD. It has 321 pages but is very easy to read.
I have just finished reading chapter 6, entitled It is not genetic – How crooked teeth are caused by poor nutrition. Chapter 5 was really captivating, entitled The language of bacteria – How your mouth controls your gut.
Chapter 4 entitled The mystery of the missing vitamin – The tooth care paradox.
Chapter 3 entitled The ancient wisdom in our teeth.
Chapter 2 entitled The modern diet's missing pieces – The Charles Darwin of nutrition.
Chapter 1 entitled Why your mouth matters.
I think you are right in saying that Dr Lin ties together dental health and a whole body approach.
I was already against root canal work. I have read more than once to avoid this work. I am also now wondering about all this emphasis on removing plaque. Apparently it is now called biofilm!
I think we all agree about the importance of vitamin D and especially after chemotherapy.
I was interested to read about your elderly relatives.
I do think that life gets more difficult the older you get. As for me, if I cannot be active, energetic and look after myself, I think I would rather say goodbye to life. My friend cannot eat much and cannot even enjoy a cup of tea.
I was interested in your relative who lived her life as a nun with minimal possessions and has even fewer now. I see so many people who are hoarders and who are slaves to their possessions. That is not for me.
I agree about staying out of hospital. I have made up my mind that I shall not be admitted to hospital for whatever reason.
Our NHS is in crisis. There is no doubt about it. The staff are dedicated but are not treated properly. The NHS is underfunded and understaffed and I would say taken for granted by a lot of the people using it. Too many people are not looking after themselves and have no idea how much they are costing. The GPs seem to want everyone on medication and I cannot believe all the prescriptions waiting for collection on the shelves of pharmacies. Remember that the over 60s, the under 18s, and those on benefits get free prescriptions on the NHS.
It is true that I got really good care with my BC treatment and I had dedicated women looking after me, but I also made an enormous effort to do everything to help myself and get myself through it. I am sure the doctors and nurses are all still doing their best, but the stress must be enormous. Nurses are leaving the NHS in droves. I do not think the present government cares at all about the NHS. They do not use it, so what do they care?
That is about all for now. Take care and try not to overdo things.
It was nice to hear from Hanieh and Sarah and I hope Marias will post soon.
Tonight is Burn's night so I should think there will be a few celebrations, especially in Scotland. I also found out it is the 136th birthday of Virginia Woolf, one of my favourite writers.
Love.
Sylvia xxxx
This is my favourite photograph of Virginia Woolf.
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Hi Sylvia, Hanieh, Maryna and everyone else,
I have been reading the thread and I apologize for not contributing so much. Life seems to be rather hectic for some odd reason - it is nothing in particular and everything in general. I have no reason to complain really other than an incredibly itchy back along my spine which comes up in little bumps and it drives me crazy. I have a similar patch on my right leg - same thing - some days I want to tear it apart, and then it settles right down. This past weekend my back was so itchy I could not sleep and I had to resort to cortisone to dampen down the severe itch. And yes, even with an itch, my mind goes to the darkest of places - I have mentioned it to several doctors (it has been on and off for about one year now) and they just shrug their shoulders and say that everyone has an itchy back. I will mention it to my oncologist when I see her in March.
There are 2 things I am struggling with right now and that is Bone medication for my osteoporosis and the other is the new Shingles vaccine called Shingrix. I never thought I would consider the bone medication but having talked to a few women who take Prolia (a shot that is given 2 times per year) and having almost every doctor tell me that I should be on it, I am now going to do further research and re think my original decision.
Regarding the Shingles vaccine - again I have always refused because the old one was only 50% effective, but I gather the new one is 90% effective and is especially good for over people over 60. I had a mild case of shingles about 10 years ago and I had chicken pox as a child. Sylvia and Mary - have either of you had the shingles vaccine? Any thoughts, feedback would be much appreciated.
Hanieh - so sorry to hear about your tiredness - it is sometimes overwhelming, but the best thing to do is rest lots and do only what you can. Your body will take time to recover from the chemotherapy - it is a very harsh treatment. Hope your daughter feels better soon.
Maryna - I understand what you mean about the weather - ours has been absolutely dismal - cold and wet and very grey. It has already seemed like a very long winter and I eagerly look forward to Spring. You mentioned about your aunts in a nursing home both in their nineties - that is remarkable - some people are actually living longer, while others have their lives shortened. I just got back from my choir rehearsal and the director's mother just turned 98 years old yesterday and still lives in her own home. I also visit an elderly gentleman in a nursing home who is 89 years old and he absolutely hates it - he calls himself an inmate and does not participate in any of the activities - he is not very happy. These 2 seniors are such contrasts. It makes me wonder what will happen to me if I ever live that long. I would prefer to stay in my own home, I think.
I do not watch the Ty Bollinger videos any more because they do not build me up - they only make me restless and anxious to try and do more to help myself. I do understand where the people are coming from in terms of their beliefs around vaccines and I am not 100% in favour of every vaccine available - also, some of the alternatives to vaccines are not always readily available nor financially accessible for a lot of people. However, the stories are enjoyable to listen to, and I did learn a lot from them whenever I did watch them.
Sylvia - I agree with you about staying out of hospital - I dislike hospitals and even though I am a nurse I am quite frightened of hospitals. They are necessary, of course, but I think it is best to avoid them if at all possible. I am curious to hear your thoughts on my questioning about Prolia and Shingrix. I will not make a quick decision at all.
I find your reading on dental work absolutely fascinating. I have had a few root canals done and Sophie Sabbage said that 90% of people with cancer have had root canals at some time in their life. I have not done any reading on this myself. What kind of plaque removal does the book talk about? When I visit my dentist the hygienist does scaling of my teeth which is for removing the build up of plaque - I get this done every 6 months. However, since my husband has semi-retired, we no longer have a dental health plan, so we will have to pay out of our own pockets for this treatment - and I think it is quite expensive, so perhaps I will only get it done once a year instead. In the meantime, I floss lots and use a Philips sonicare brush which was recommended by my dentist.
You must be getting anxious about getting the results of your biopsy - waiting for results can be quite scary for all of us. I would imagine the sleeve for your arm must be quite uncomfortable. Whenever I go on a long flight I wear compression stockings and they feel a bit uncomfortable but it is so worth it not to have any swelling at the end of a long haul journey. I do have varicose veins on my right leg which do not bother me much at all, but the compression stocking is a preventative thing. I have never had a sleeve for my arm, but I do know 2 women who wear them when they are travelling to help prevent lymphodema. Of all the people I know, you are the one who takes the absolute best care of yourself - you are so on top of everything and I love how you get yourself so informed about issues and then make your decisions about what to do. We are all learning a lot from you and thank you so much for sharing your wealth of knowledge with us.
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HI Sylvia
I saw most of the vaccine program last night, it was quite eye-opening. It covered the way vaccines started and their progression of use, the CDC (Centers for Disease Control) Schedule, and the way that the pharmaceutical companies have removed themselves from any legal ramifications when it comes to vaccines and their effects. I should have taken notes, I think. I saw most of it, not all.
The thing that stands out most in my mind is the sheer number of immunizations that children have when very small, before they are one I think. The number has tripled now since the 80s. They now are subjected to a very large number of injections, including a shot against Hepatitis B when they are newborn with boosters to follow . All of these immunizations have to have boosters, so as children grow they are subjected to 3 or 4 booster shots of all of these. Diptheria, pertussis, tetanus, HIB (Haemophilus influenza), Hepatitis B, Polio, Pneumococcus are all on the list of diseases inoculated against. Also chicken pox, measles, mumps, rubella and Hepatitis A. All of these are given by the age of 1, with boosters to follow. Many of these are mandated by law. The CDC schedule is given to doctors and they are supposed to adhere to it. Parents are supposed to have informed consent but doctors are so rushed nowadays that doesn't happen, usually they are just told vaccines are good and must be given. The pharmaceutical companies years ago apparently went to the government and said they wanted their vaccines to be free from legal ramifications or they would stop manufacturing them. The government caved and now the Pharma companies cannot be sued for any ill effects from vaccines. There are no large studies that are highly publicized that prove any ill effects, but as one doctor said in an interview, they do not really even know what to look for. Many doctors suspect the huge rise in autism and ADHD disorders to be linked to vaccines, but they have no actual proof, since there are none, or very few, large peer-reviewed studies. It also came out from several of the doctors that many docs who are pushing the CDC injection schedule are themselves not inoculating their children with the schedule, but are spacing the drugs out over time instead of putting them all in those very small bodies. It was also emphasized that doctors are not highly educated on vaccines in medical school, but told that there is a schedule and it should be followed for patient safety.
https://thetruthaboutvaccines.com/vaccine-schedule...
I just want to add that I feel as does Adagio, sometimes it is all too much information and I tune out because it just makes me feel I should be doing more. I tuned into this program and found it compelling. I have been doing a bit of looking around on the web this morning and see that in the 50s (I was born in 1952) there were only a few vaccinations given and they were not mandated. I have a smallpox vaccination scar, and I remember having the polio vaccine. I remember being ill with the mumps, so must not have been protected from that. Now apparently children have approximately 26 vaccinations by the time they are two, and possibly the number is in the 60s by the time they are 18 if they have all the boosters.
I am not a doctor, I am not an expert, I am not a mother and have never been responsible for getting a child vaccinated. I am just someone who has a curious mind, and this does all seem excessive on its' face, and it is hard to find anything on CDC or medical websites that is anything but glowing when it comes to vaccines.
I guess I have been long-winded, Sylvia, and I will respond to the rest of your post later.
Talk to you soon, love
Mary
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