Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
So glad all went well with your further biopsy. I am surprized that you would be told to put Vaseline on the wound - I once read that Vaseline is a by product of petroleum and is not the greatest for our skin. But perhaps I misread it and there is something other ingredient in Vaseline that I do not know about - it is something I do not use. But if it works, that is good. Perhaps it is to keep the wound moist and from drying out, thus aiding in healing.. You mentioned about using moisturizer on your lymphodema arm - can I ask what kind you use? You will be very glad when you are done with all your appointments.
I am feeling so much better now - my back is almost healed completely and is very smooth again and hardly itchy at all. I do not use the cortisone cream any more just a simple salve which I make myself with organic shea butter and a few drops of lavender and geranium essential oils. It is very moisturizing and soothing. I am also sleeping again and that makes all the difference to my mood and general spirits. It has been a tough few weeks - but in the grand scheme of things it is a minor problem - more an irritant. But I will mention it to my oncologist when I see her on March 16th just to be certain there is nothing more sinister in the symptoms.
I am glad that I am feeling better because next week my husband and I are heading to Zihuatenajo in Mexico for a week. It is a small fishing village and is not touristy like other areas in Mexico - lots of local families and shops and one does not hear much English at all. We are staying at a nice bed and breakfast on the bay with a beautiful ocean view. We stayed there last year and loved it, because it is exceedingly quiet and secluded and is situated in a lovely forested area with beautiful birds. It is called a boutique hotel and it has only 7 rooms - and the great thing is that the other people staying there love the peace and quiet too which makes it tranquil and relaxing. I plan on catching up on sleep, reading lots, swimming in the pool, and enjoying some tasty and different food.
Two days after we get back from Mexico, I go to see my Oncologist and she told me when I last saw her that this will be my last visit with her (providing all is well, of course). I am hoping all will be well.
Take care of yourself Sylvia.
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Pam - what a lovely Spring photo - definitely made me smile. I am longing for Spring.
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Maryna - so sorry to hear of the pain in your shoulders, back and knees. It sounds like your body still needs more rest after the nasty flu that you have had. It is great though, that your weather was warm enough for you to be outside doing some yard chores - I am longing for those days.
You will see from my post above to Sylvia that I am doing much better now - I have had no word about an appointment with a dermatologist - but getting an appointment with a specialist is very slow here in Canada these days. It is a mystery how the intense itch and bumps only appeared on my back - but thankfully it has settled down and I am no longer using the cortisone cream which I see as a plus - although it was a lifesaver for me.
I am sure looking forward to our vacation in sunny Mexico - my body needs more sleep and not having to prepare food myself will be a bonus. The place we are staying offer very healthy breakfasts, so that is a good start to the day.
This weekend I am having a short visit from my son, his wife and their 2 children - they live in Quebec and we only see them 2 times a year - this will be an exceeding short visit since they arrive at 7pm on Friday and leave at 2pm on Saturday - they are on their way to Hawaii and are having an extended layover in Vancouver. We will have a family brunch so that we can all be together - albeit for a short while. The grandchildren from Quebec are 6 and 4, and they will get to see their little cousin who is just 10 months old and lives here in Vancouver.
Hoping and praying that your aches and pains settle down swiftly. Take care of yourself Maryna.
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Hanieh - thanks for sharing the beautiful photo of yourself and keeping us up to date on how you are doing. Remember to take good care of yourself - and let others help you. There is light at the end of this dark journey. Wishing only the best for you.
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Hello Pam,
Many thanks for posting the picture of your daffodils. They certainly look lovely. I like the wall plates that you have on the wall.
In Exmouth today we have unusually cold weather with a nasty wind. There are some daffodils appearing in the grounds but today is not a day for taking photographs.
I am supposed to be resting according to hospital instructions, but it is quite difficult to do.
I hope your week is going well.
Love.
Sylvia xxxx
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Hello adagio,
Thank you for your post. It is true that Vaseline is a by-product of petroleum, in fact it is called petroleum jelly, and is a product that has been used for years. It was and still is used for babies. In fact I bought the Vaseline in the baby area of a supermarket.
It is used after excision of a mole in order to stop the wound crusting. It worked very well the first time and seems to be doing an excellent job this time. I have to put it on and around the stitched up area twice a day this week and once a day next week. Because of this I cannot wear my compression sleeve as the arm has to be free of all creams etc. because apparently any product spoils the material of the compression sleeve. I hope to get back to looking after the lymphoedema when I have the excision stitches taken out on Friday. I can then put the Vaseline on at bed time and then put my moisturiser on the rest of the arm overnight, as I am supposed to.
You asked about the moisturiser. I always use Dr Organic products and get them in my local Holland and Barrett store, where they have a great range. For a long time I have been using their range of organic virgin coconut oils for the skin, the hands and nails and day and night cream. They are excellent. For a change, because of the dehydration problem with lymphoedema I have been using Dr Organic Vitamin E Body Butter (Tocopherol enriched). It says on the label Super Rich Moisturiser – A richly hydrating and restoring body butter with aloe vera, shea butter and jojoba seed oil. It also has, what they call bioactive and organic ingredients and in addition to those I have just mentioned, it has sunflower seed oil, and apple fruit extract.
I have found it excellent. It says it is free from parabens, sls, synthetic colours, dea, phthalates, petroleum glycols, sht, isothiazolinones, mineral oil, silicones.
www.drorganic. co.uk
I shall be very glad when I finish these appointments. I am hoping there will be no follow up from the mole as I have been assured will be the situation. I know there are always exceptions.
With my very active mind I have been wondering whether there is any connection between the mole and my cancer treatment. I am pretty sure the mole was not there before.
I was amazed yesterday when I was reading through the active topics, which I tend to do on a regular basis, to notice something which caught my attention. The thread was Sleeve for left arm, and the forum was Lymphoedema. There was a post there by gb2115 on page 3 of the 6 pages of active topics and I saw that this person was talking about a suspicious mole that she had had removed from the side of her radiated breast. I found that most interesting.
I remember when I was having radiotherapy that I was positioned on the table with my right arm held up behind my neck to radiate under the arm. It just made me wonder about the mole. We all know there are serious side effects from surgery, chemotherapy and radiotherapy.
I have an appointment at the lymphoedema clinic on Wednesday March 7th at 2 pm. I hope the mole episode is over, though I have to wait four weeks for the result, and I can settle down to treat the lymphoedema. This has been a bit erratic because of the mole.
I was glad to know that you are feeling much better now and that your back has almost healed. It is good that you have stopped using the cortisone cream. I like the sound of your home made salve. It looks as though shea butter is very popular.
I am glad to know you are sleeping better and of course that will make you feel better in yourself.
I think it is a good idea to mention it to your oncologist. It is good to put them to the test, so that their mind widens and is not confined to just drugs!
I do hope you and your husband have a good time in Mexico. It sounds as though you are staying in a very nice place. It should be like a tonic after your skin ordeal and the Canadian winter.
I do hope all goes well with your last visit to the oncologist. You have gone just over the five years normal. I stayed with my oncologist for ten years and it was very strange to say goodbye to her. She has now retired, which is a great pity.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
You will see from what I said to adagio that I came across that post about a mole on the radiated side of the breast as I was going through the six pages of active topics yesterday.
I also came across something else on those pages in the forum Chemotherapy Before, During and After.
It was all about patient who had suffered permanent hair loss from taxane treatment that had gone on for quite a few years. I need to go back and read more because it seemed that patients were taking legal action and there was something advertisements to this effect on the television. I was wondering whether you know anything about all this?
Thinking of you.
Love.
Sylvia xxxx
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Hi, Pam
I'm glad you took in the story of my cancer journey, as I wrote things down I was a little surprised that it was all so vivid in my mind. And yet at the time I felt as if my brain was wrapped in cotton balls, I was just moving through the days.
People have told me I was heroic, and even a "saint", because I went through these things while trying to care for my husband. I tell them please not to use those terms, but to save them for those who deserve them. I was living by the mantra of "one day at a time" and trying to do whatever had to be done on a given day. There are things in our lives that just have to be dealt with, I didn't see myself having a choice. But I am now trying to be kinder to myself, instead of having regrets over what was, and because I am not as I was, I am telling myself I really overcame a lot, and I am recognizing that there is a core of strength, and determination somewhere inside me, even on the days when I can't see it.
I am feeling better from the flu, but I was warned the time of year is near for spring allergies, we just swing from one thing to another. At least allergies don't usually leave me lying inert for 2 weeks!
The story of John Adams' daughter's mastectomy has stayed with me too, I am also very grateful that we have anesthesia these days.
Your daffodil picture is beautiful, set off so beautifully by the blue plates. Sylvia requested some spring pics, glad you could oblige, we are still just brown here with hints of green grass. I did go to clean out a bluebird house yesterday, and found they have already been busy nest-building. They found green moss for their nest, so there are things growing even though our nights are still cold.
I will talk to you again soon, love,
Mary
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HI Adagio
I am so glad to hear your skin problems are getting better. I wonder if what you had is eczema, my husband would get it very bad in the cold, dry winter but it would always get better when the weather started getting a little warmer and more humid. Today here is quite warm and wet, feels very springlike but is supposed to cool off a bit tomorrow.
Your trip to Mexico sounds wonderful and relaxing. How did you find this place? Many years ago a friend and I took the train that crosses the Copper Canyon and the Sierra Madres in Mexico and then plunges down to sea level. We ended up in a little town called Topolobampo. I never forgot it, it was so small and friendly, we sat on the second floor porch of a little restaurant that hugged the shore, we watched the fishermen catch the fish we ate for lunch. We were very green, we ordered a seafood platter and that's what we got, a huge platter of all different kinds of fish and octopus and whatever they happened to catch that day. Actually, I still do that sometimes when I don't know what I am doing near the ocean, I order a seafood platter and just see what I get, it has always been fabulous. Anyway, have a great time, Zihuatenajo sounds like a great place for you to forget about your skin problems and all the cares of daily life.
As for the flu and having more rest, I am so tired of resting! Even with the pain, it is so good to be up and around and using my body again. Bad things happen to a body when it lies about too long. I have hopes now that I will not have this nasty flu again for many years, would prefer never!
It sounds like your son and his family are also heading off to a nice vacation in Hawaii. How nice that you can all get together even if the time is short. With your family in Vancouver and his in Quebec, you are about as far apart as you can get and still be in the same country!
I am a little surprised your MO will cut you loose already after your next visit, I would think you would be seen for 10 years. I think Sylvia was seen for 10 years in UK for screening visits. Perhaps you will see a Nurse Practitioner or a PA instead, you will have to let me know, I'm curious. But, I am sure all will be well, except you might be a little sunburned!
I will talk to you again soon, love
Mary
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Hello everyone,
As you know I have been reading the book The Dental Diet – The surprising link between your teeth, real food and life changing natural health, by Dr Steven Lin, for sometime now.
Lately I have been concentrating my reading on Part III of the book entitled Dental Nutrition – How To Eat For A Healthy Mouth, Body And Mind.
The chapters continue from the beginning of the book, so chapter 9 of the third part is entitled Eating To Make Your Dental Check-up A Breeze. I have been concentrating on parts of this chapter.
I have also been concentrating on chapter 10 entitled The Dental Diet Model And Food Pyramid. I am going to try to post some diagrams later.
I am now posting some bits of information that I have taken out of both of these chapters. Since I am very interested in healthy nutrition and we have discussed it a lot on this thread, I am posting the following information.
Diet tips gleaned from the Dental Diet book
K2 MK4 form
eggs, shellfish, emu oil
K2 MK7 form – fermentation of bacteria
natto – fermented soy bean
sauerkraut
cheese – brie and Gouda
Saturated fats
beef, poultry, dairy products – hard cheese (cheddar), whole milk, cream, butter, lard, tallow, ghee, suet, palm oil, coconut oil
Unsaturated fat – this includes mono-unsaturated fat and polyunsaturated fat.
Mono-unsaturated fat
olive oil, peanut oil, peanuts, avocados, almonds
Polyunsaturated fats
fatty fish, safflower, sesame and sunflower seeds, corn, soybeans, nuts, seeds and other oils, flaxseed, walnuts
Vitamin D
fatty fish, liver, cheese, egg yolk
Vitamin A
animal foods are a better source of vitamin A than plant foods. Plant foods are less potent. Apparently cod liver oil is a very good source of vitamin A and for good absorption should be taken after the main meal of the day. Cod liver oil appears to wrap up vitamin A & D.
Vitamin K2
This is a very important vitamin and there is lots of information about it in the book. It plays an important role in making sure that your calcium is absorbed into the bones and stays out of your blood vessels. It seems that vitamin K2 is important in the absorption of calcium and vitamin D into the bones.
If my understanding is correct, it seems to be that the lack of vitamin K2 is the reason why women with osteoporosis having just calcium and vitamin D do not see any progress with their bones.
Vitamin D
This is hard to get in the diet so we need a combination of sunshine and taking vitamin D supplements.
Support Nutrients
Calcium
If my reading is correct then the answer to getting more calcium to the bones does not seem to be taking more calcium supplements, but to make sure you are getting sufficient fat in the diet in order to absorb fat soluble vitamins. The belief in this book seems to be that you need enough fat soluble vitamins in the body to make use of calcium.
To quote "In some cases, calcium supplements (especially in the form of calcium carbonate) have been found to have little impact on bone density and may even be harmful to our health. It is best to consume calcium in its biologically absorbable forms, including dairy, green vegetables (especially dark, leafy greens), almonds, whole fish and soups with meat cooked on the bone."
Support Nutrients
fat and cholesterol (see various fats)
cholesterol – fish, eggs
Magnesium
You need magnesium to make vitamin A and D work.
"The interaction between magnesium, vitamin D and calcium is a good example of the importance of magnesium".
Foods: spinach
pumpkin seeds
avocados
black beans
yoghurt
dark chocolate
bananas
Zinc
beef
lamb
chicken
pumpkin seeds
spinach
mushrooms
cashews
chick peas
Gelatin
This book states the importance of dietary collagen and it is found in a natural state mainly in animal connective tissue. Because of this it states in the book that broths and soups with meat cooked on the bone are important for health. These are important because they are among the few dietary sources of collagen. When they are cooked they turn collagen into gelatin.
It is further stated that the body sometimes cannot repair its own connective tissues and gives as an example the fact that in people with gum disease, chronic inflammatory processes lead to the breakdown of these tissues.
Please remember that I am only picking out bits and pieces of what I have read and am making it as simple as I can. There are more detailed and more complicated explanations for all of these headings in the book.
Please remember that these are not necessarily my own beliefs. They are bits that I have thought interesting.
As far as meat is concerned, the emphasis is on grass fed animals. I do not eat meat because of the growth factor hormones and because of the way animals are fed for profit in our modern society.
I do not know what to think about dairy products. I do not eat them because of the growth factor hormones and how they have been associated with breast cancer.
I think when all is said and done, we do need to eat a very varied diet and concentrate on the healthy nutrition of what we eat.
I can understand how we may have been led astray by low fat diets being healthy, and how we may not be getting the fat absorbable vitamins we need because of lack of fat in the diet.
As with every thing, we have to read any given information and make up our own minds about eating and drinking. One thing is certain, and that is junk food, processed food and too much sugar are causing a lot of health problems.
All comments and views are welcome.
Best wishes
Sylvia xxxx
The snow has finally hit Exmouth, but is much, much worse elsewhere in the UK. There seems to be a lot of panic going on and Scotland has been declared a 'red zone' and talk is of the beast from the East! Russians are blamed for everything these days!
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Hi, Sylvia (I visited Exmouth last summer -- seems like a long time ago).
I was diagnosed with triple-negative a month ago and had a lumpectomy a fortnight ago. Still a bit bruised and battered though healing. It's worrying to read that this type of cancer is harder to treat than the other varieties and good to hear from women who have had successful treatment.
I have yet to have the Big Talk with the oncologists about the next stage of treatment. Having watched my beloved husband die of cancer (oesophageal, much nastier) three years ago, I am very negative about chemotherapy, which just made his last three months miserable, but accept that it may be the only treatment.
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Hi, Sylvia
I do look at other threads when I have time, on many of them I have to agree with you, it seems they would be better served to join an existing thread rather than just add another, but whatever works I suppose. Some of the threads have very knowledgable people posting, there was a lady named Sas-Schatzi on one of them, I don't remember where it was though. She would post very long, and informative messages. Do you recall her?
Also like you, almost all my body problems seem to be on the right side, the side of my breast surgery. I don't know what to think about the skin cancers. I have a friend who is 73, for her entire life she has sat in the sun for hours on end every summer.. Her skin is very dry and wrinkled but she has not had skin cancer. I have another friend who is very fair, and gets no color even in the summer. She has had to have a melanoma cut out of her face.
I do get a skin check annually from my dermatologist, however, last year she did not check my scalp. I went back a different time to get the patches on my head checked, now she is keeping an eye on them. I believe the goat cheese I have been getting is brand name Cypress Grove, they have a couple of other interesting flavors too.
You asked about the Dental Diet. This book is very interesting, it is really pulling up some long-held ideas and questioning them. For those who don't know, this book is about the connection between the teeth, and overall health, and why there is so much obesity, and ill health, and bad teeth these days, and why our diets for the most part are all wrong. There is too much information and discussion in this book to go over it all, but he really does go into the beliefs we have about "good" foods and "bad", and why some of the things we consider bad are really not.
In the back of this book there is a 40-day meal plan that the author of the book (who is also a dentist) recommends. When you look over this meal plan you notice some things.
1. Every meal includes a serving of fermented food, such as raw sauerkraut, kefir, kombutcha or kimchi. 2. Every meal includes fat, and I am not talking about only olive oil! Butter and lard are used regularly. And also olive oil, and full-fat cheese and coconut oil. 3. There is a lot of meat included, even bacon. Lamb, pork, beef and chicken and fried eggs. He does recommend pasture-raised, grass-fed meats. This dentist/author thinks we have been misinformed about many things, and the reason for most of our problems is the "food" we are being sold these days. Pre-packaged, processed and so much of it containing the high-fructose corn syrup and other additives that our bodies don't know what to do with. Highly processed white flour is a problem, as are all the refined oils, and margarines. 4. Sugar is an enemy of our good health, this writer recommends no sugar, at all. There is so much more here, but perhaps more people will read this book if interested. Because of this book, I have tried a couple of things.
A couple of months ago I was given some freshly frozen beef liver, from people who raise their own cattle and butcher them for their own use. I had not eaten liver in years, even though I like it, it has gone quite out of favor here. Anyway, because of this book, a couple of days ago I thawed the liver enough to slice it, and a little later I melted some butter and cooked it in a big pan till lightly browned. It was delicious, it was better than I anticipated. I almost felt as if I had been given permission to eat this, as silly as that sounds.
Speaking for myself, I would have a hard time giving up the big spoon of my neighbor's honey I put in my coffee in the morning. Other than that, I eat no sugar in a day, and probably only eat it if I am eating out and it is in something. I always have organic butter on hand, but have not used lard in years. I will probably not become a big meat-eater, but I eat meat now and am happy to feel okay about adding a bit more to my diet. It might take time to add a meal of bacon and eggs fried in lard once in a while though! Thinking further about all this, I was remembering how things were when I was a child; we ate things from the garden, and we raised our own animals for us to eat. We milked our own cows, and made our own butter, we would cook down the pork fat for lard. A grocery store trip would not be a big one, we would buy sugar, coffee, flour, salt and pepper. I had a lot of tooth cavities however, I don't know how all that fits in. We ate very little candy, and no processed food, but did usually have on hand home-baked goods, such as cake and cookies. My dentist blamed the lack of fluoride in rural water-wells for my cavities, I don't know if I believe that either.
Were people healthier then? I don't know, my grandparents lived to their upper 80s and were not in nursing homes when they died. I only recall 2 people I knew who had cancer by the time I was 16, and obese people were few in number. My dad had all his own teeth, yet died of a heart-attack at 68. I look around where I am now, and there are a lot of overweight people, and a lot of heart disease and cancer. I know that people are eating a lot of processed oils, flours, sugar and if I go out to eat around here, that is what is on the menu, for the most part. It makes sense to me that eating these foods that should be simple, and are now highly processed, would make a big difference if our own bodies can't recognize them as nutrients.
Okay, I think I have rambled on long enough for now, happy to talk more about this later,
Love, Mary
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Hello SusieW5,
Thank you for your post. I was sorry to read that you had been diagnosed with triple negative breast cancer just a month ago and that you had had a lumpectomy just a short fortnight ago. I would think you are going through a bit of a shock right now as a diagnosis of breast cancer seems to do this to us. Give yourself time to recover and tell yourself that you are going to be alright. You will get a lot of support here and we shall help you all we can to deal with this.
If that were me I would avoid the internet and all that you read on there about how terrible it is to have breast cancer with triple negative receptors.
The treatment is basically the same for breast cancer with these receptors as it is for breast cancer with hormonal receptors, that is there is surgery, lumpectomy or mastectomy, chemotherapy and radiotherapy. The difference is that for hormonal breast cancer there is medication after treatment with drugs such as tamoxifen and aromatase inhibitors, such as Arimidex, and these drugs are no picnic and have nasty side effects.
Take everything one day at a time and have that talk with your oncologist and then deal with that.
You need to know what kind of breast cancer you have. The most common is invasive ductal carcinoma (IDC) but there are other less common ones. There is also something called ductal carcinoma in-situ (DCIS) which is a very early stage of breast cancer and which some say is pre cancer.
The chemotherapy drugs offered are much the same for breast cancer. They are as follows:
epirubicin (Ellence)
doxorubicin (Adriamycin)
cyclophosphamide (Cytoxan)
fluorouracil (5FU)
methotrexate (Maxtrex)
These are what they call the old generation of chemotherapy drugs, but they are still very much in use.
These drugs are used in different combinations and your oncologist will decide which ones she thinks you should have. It seems that epirubicin and cyclophosphamide is quite popular and is written as EC.
The taxanes, docetaxel (Taxotere), and paclitaxel (Taxol) are also widely used. I had three months of EC and then three months of Taxotere on its own.
Lately carboplatin drugs are also used.
You need to know what stage your tumour is (stage 1 to 4).
You need to know what grade your tumour is (grades 1 to 3). Most triple negative tumours are grade 3 but some are grade 2.
because you had a lumpectomy I am thinking that your tumour may be quite small. If this is the case, you may not need chemotherapy, but you need to ask about this. I think oncologists probably advise chemotherapy with triple negative receptor status but this may not always be the case. They may think radiotherapy is enough.
Take control of your treatment and make sure you are completely informed about the side effects of whatever you choose.
I think that is enough information for you to deal with for the time being. Keep with us and let us know what goes on.
I was so sorry to read about your husband and how he died three years ago from oesophageal cancer. I saw a much loved uncle die of the same back in 2010, so I know what you are talking about. He had a tumour on one of the tonsils. He chose not to have any treatment because it all sounded so awful, with major surgery on the jaw and other horrible things. He did try an alternative treatment prescribed by a doctor in a hospice. It was called CV247, but is was too late for him.
I have heard all about keeping people alive on chemotherapy drugs and taking away all quality of life. I have just seen it with a friend on immunotherapy drugs. I can understand how you feel negative about chemotherapy. But I think it is much easier with breast cancer.
If you have to have chemotherapy, especially one of the taxanes, it seems to be easier on patients if they have smaller doses weekly.
Make sure, too, that your oncologist gets your height and weight, because I was told by my oncologist that the dose of chemotherapy drugs is based on these two things.
I was pleased to know that you visited Exmouth last summer. What did you think of it. Are you in the UK?
I do hope you have some good support from family and friends and I also hope that you have a good hospital. According to the media there is still a postcode lottery going on in the UK when it comes to cancer treatment. Be your own best advocate.
Sending you warm wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I do not recall that name at all. I did look it up on the members list and saw that she had been on bc.org for a long time and seems to post all over the place. I noticed that she did not give any details about herself in her signature. I tend not to look at too many because it gets confusing
I do not know what to think about skin cancers. I do know that fair haired, pale skinned people with blue or green eyes and who tend to burn easily seem to be very vulnerable. I think that some of the skin cancers may be due to cancer treatment, because some appear on areas of the body that are not exposed to the sun. I think, like Chris Woollams, we should have some sun in order to get vitamin D but we do not need a lot of sun and we should be very careful about the sun when going to hot countries.
With your insurance based health system, do you get to see specialists more easily? Here in the UK you have to get referrals through your GP and I think that is not easy under the NHS. GPs can refuse to refer you.
I think it is a good idea to keep a check on all moles.
I was glad to know you are finding the Dental Diet book interesting. You will see that I have done a post, in a simplified manner, to help people emphasise healthy foods in a way that they can remember when shopping.
It is obvious that Dr Steven Lin believes that the low fat diet has been misleading and has done a lot of harm. This kind of thing keeps happening. I can see a lot of sense about needing some saturated fat in our diet. I have found chapters 9 & 10 really interesting and useful. I do not think I shall take up eating meat or poultry but I can understand how it is easier for you to get healthy animal products in a rural setting like yours.
I do believe what he says about the history of our jaws and teeth and how we have ruined dental health in our modern society with our junk food and overly processed foods which have taken all the goodness out of everything.
I agree with you that there is a lot of detail in the book and we can only give a sketch of it on the thread. What we need to do is get that varied diet. I hope to improve my gum disease and am not convinced by what my dentist has told me, namely that I have genetic gum disease and it is a kind of allergy to the normal bacteria in the mouth that everybody has but that I am allergic to them and that causes inflammation of the gum and tooth loss. I went for my check up last week and he said that my gums and teeth were the best he had ever seen them. I have been working very hard on the mouth biome and been having lots of fermented food. Any coincidence? I am also making sure I am having a lot of chewing foods, such as raw celery, radishes and fresh coconut. I think dentists on the whole are in the same category as orthodox doctors.
I do not know what to think about some of the saturated fats, but I do have plenty of organic eggs, eat raw coconut oil and fresh coconut chunks. I have plenty of fish and prawns from the ocean on the shell.
Of course, Raymond and I were brought up on meat and poultry, but that was before supermarkets and adulterated food. I think liver seems to be a healthy food but I have doubts in a town life.
Like you, I have doubts about fluoride but my dentist swears by it.
Have you finished reading the Dental Diet? I have but I keep dipping back into it.
It has been snowing like mad today and Exmouth is covered in a blanket of snow. There is now a red warning for Devon and the south west of England. Apparently this means a danger to life!
I do hope I can get to my GPs surgery tomorrow as I have an appointment to remove the stitches from my arm.
That is all for now.
Love.
Sylvia xxxx
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Hello everyone,
These are a couple of photographs of where I live in Exmouth. I took them before the snow really started to fall with a vengeance. we are supposed to be getting 20 cms and much more on Dartmoor and Exmoor. I shall try to take some more in a minute.
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To conclude the post on nutrition as indicated in the book The Dental Diet, by Dr Steven Lin, I thought I would post the following pyramid. It is very different in its priority of foods, compared to the old pyramid that was preached for a very long time.
This is what he says about this pyramid:
Tier 1, priority is given to plant foods such as vegetables and these include fermentable prebiotic vegetables, and legumes and herbs. He believes these should make up the majority of every meal.
Tier 2, the groups in this tier are meats, eggs, fish, dairy if tolerated, and fermented foods. They have crucial nutrients your body needs and you should include from one to two of these groups in every meal.
Tier 3, this includes food you can cook with or add to your food for flavouring. This includes fats, oils, uts, seeds and spices.
Tier 4, this consists of foods you should eat in limited quantities generally because they contain a lot of simple sugars. These are grains and fruits.
What do you think of this? Remember, he is doing this for good dental health, which he says equates to good health in general.
The old pyramid gave priority to bread, cereal, rice and pasta and recommended eight to eleven servings!
Best wishes
Sylvia
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Hello everyone,
It is a strange old week here. I am beginning to feel marooned in my apartment. I am wondering about my appointment tomorrow to remove stitches from my arm. It was quite a deep cut, is quite sore and making me feel quite tired. Apparently i need to rest, which I find hard and have been told it will take 12 months to get the muscle back in order.
We have not heard from Sarah in a while, so I hope all is well with her mother and we have not heard from Nancy53 and Duchess60, not to mention Marias.
I hope all is well.
Best wishes.
Sylvia xxxx
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Hello Hanieh,
Are things going any better with you? I do hope so. You are often in my thoughts. This post to you marks the 11,000 posts on this thread and the posts have been remarkable.
Love.
Sylvia xxxx
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Sylvia,
I looked at the Devon weather report and it looks like you may have trouble getting to your appointment today. I do very much understand how you feel marooned in your apartment. I hope your electricity keeps working, your forecast looks like it's also windy and precipitation is continuing. I hope you called the clinic early and got your name in for another appointment if indeed this one today is cancelled.
I can see specialists fairly easily, depending on the type of doctor. There is a very long wait for neurologists, although orthopedic docs are behind every tree, seemingly. Dermatologists require a wait, too. Once you get into a doctor's practice, things become a little easier, and they will work with you a little better. I do not have to go through my GP in most cases, and can call a specialist myself, or can be referred.
I have the Dental Diet book right here on my desk behind my monitor, I find myself looking at it frequently too. When I started reading it, I was very surprised to learn how much there was to learn about it all, I guess I had somehow thought that the teeth were sort of a separate thing unto themselves, and now I appreciate that they are just part of our whole body system, and I have really appreciated them for many years. When I moved away from home I did not take the best care of them or things in general for a while, and about 35 years ago I finally went to a dentist who took charge and really helped me clean my mouth up and made me pay attention.
The "healthy fats" subject is one that I have found confusing over the years, remember we used to be told that canola oil was very healthy, and lard and butter were bad. Margarine was good, then it was bad. Peanut oil used to be thought healthy. That's why I began to lean on olive oil and a little butter and avocados and whatever fat was in fish and a little in meat. I do like coconut oil too.
I do find your dentist's theory on your being allergic to the bacteria in your mouth rather odd. But, if that is true, I can see that changing the biome of our gut and mouth would help that immensely. Congratulations on your good report!
Thanks for the pics, I have been checking your weather on varied websites too, the snowfall is quite dramatic. The good thing this time of year, it shouldn't lay around for very long because the temps will rise before too long. Be careful if you go out!
I will talk to you again soon, love
Mary
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Hello Mary,
I was just about to post to you when I saw that you had posted to me. The weather here in Devon has been pretty nasty and I knew I was going to be in trouble about my appointment. I phoned the Royal Devon and Exeter Hospital (Heavitree site) Dermatology Department and spoke to someone and asked about was it possible for me to keep the stitches in until Monday. I was told that should be alright, so I contacted my GP surgery, cancelled today's appointment and rearranged to go on Monday. I do hope the weather will be better by then, although there is no sign so far of any clearing up being done in Exmouth. Nothing is very efficient in this country. It has stopped snowing but we have been getting freezing rain and it is somewhat treacherous outside.
It seems that I have been having nothing but obstacles since that flu vaccine! I am supposed to go to the lymphoedema clinic on Wednesday (it is the same place as the dermatology department) but I am wondering whether it is worth it, as I have not been able to wear the sleeve very much with all this mole business going on.
I do envy you being able to see specialists fairly easily, depending on the type of doctor. Here, everything has to be done through a visit to the GP and then you have get the GP's consent to see a specialist and then the GP makes a referral and it is all long and bureaucratic. I do not think you can even phone up a private hospital and get an appointment that way. You still have to have a referral from the GP. Private medicine is very expensive here and the NHS do not really like you getting mixed up with it.
Like you, I keep looking at the Dental Diet book. Have you picked up on the importance of vitamin K2? I was reading about how important it is and how it seems that treating osteoporosis with just calcium and vitamin D will not bring any improvement in bone density. You need K2 in the equation. It is a lot more complicated than that and I can see the sense in it all. Have a look at chapter 4 page 61, the mystery of the missing vitamin and read the chapter. Pay special attention to page 68 – On the hunt for Activator X.
Have a look at pages 70 & 71 – The big reveal: How Activator X was identified as vitamin K2.
Have a look at page 72 – Your teeth and body depend on Vitamin K2 and on page 73 it explains how we humans can get it. Tell me what you think.
I do think this is an excellent reference book and one that you can keep dipping into and discover things.
The teeth and mouth are very important with their own microbiome that affects the gut microbiome.
As for my gum problems, I cannot quite work out why I have them but I do know everything got much worse with breast cancer treatment.
Like you, I also get a bit confused about healthy fats. I think the low fat diet has lost all credibility and I do believe we need a mixture of fats, saturated, mono-unsaturated and polyunsaturated. Moderation in everything is probably the best way to go. In the book the emphasis is on making sure we get fat soluble vitamins in our food and how essential they are and that they have been much neglected with all the low fat hype. I still think the Dental Diet ties up with the rainbow/Mediterranean diet.
What did you think of the pyramid in the Dental Diet?
Have you had a look at the recipes in the last chapter? What do you think of them?
I do hope the snow disappears soon. We are staying put today and we did so yesterday. It is just too slippery out there.
Just going back to the food matter, I think I am doing fine on most fats, but I do wonder about saturated fat, although I do have organic eggs and Atlantic prawns on the shell. I do not have any meat and I see that liver seems to be very important. Raymond and I were brought up on it, but are wary of what is being sold in the stores.
The latest news is about diabetes and how they think there are now five different kinds with different causes and how they want to personalise treatment. I remember that about cancer and it seems to be 'let us produce more drugs'! I really think diabetes can be cured through diet. If Dr Mosley can do it then so can anybody else.
I must end now. I hope that our group can keep ourselves at the top of the active topics. It is so easy to disappear off the pages.
Thinking of you.
Love.
Sylvia xxxx
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Hi, Sylvia
I checked your weather this morning, and saw that the good news is it will get warmer and the snow will turn to rain. The bad news is it looks like rain for the next 5 days or so!
You should be able to get to the hospital to finish up with your arm Monday, and then on to the next thing. Perhaps you could push back your visit to the lymphedema clinic too, and reschedule for a time when your arm is all healed.
I wanted to add to my statements about seeing a specialist myself, or going through GP. I believe it does depend on the type of insurance one has, I think some insurance companies demand a referral. It is all quite confusing.
I saw a doctor several days ago I will tell you about. If you recall, I had a shot in my knee from an orthopedic doc about 3 months ago. It didn't work, and then that doc referred me to the Pain Clinic. I was doubtful about that, but decided to go and see what was said. As you can probably imagine, that doc asked a lot of questions about drug addiction, and alcohol use. He said what he could try to do is a nerve block, they would give me a shot of local anesthetic in a particular spot; if it works to dull the pain then they do an ablation on the particular nerves they are trying to dull. This lasts about a year if it works at all. A question came to me while listening. So I said, " I do not have constant pain at all times. If I am not active, and my knee is not bent at right angles for an extended time, I might not be in pain at my visit." He said that is a problem, since if there is no pain they won't know if they are stopping the pain. I finally told him I think I will just live with it for now, and maybe will be back later. The other thing he had been pushing during the whole visit was the anti-depressant neuropathy drugs, such as Cymbalta, Lyrica and Amitryptyline. By the way, if you ever just want to be frightened look at a list of all the possible side effects of those drugs! I told him I wasn't interested and had even tried some of those drugs a few years ago. By that time I was finished and so was he, he left and a nurse came in to lead me out and handed me a sample box of........Lyrica! She said there would be a full prescription waiting for me at my pharmacy. I told her "I didn't tell him I wanted that." She just smiled and led me out, and that was that.
I think I will have to make peace with living with some pain, and my consolation is that if it gets unbearable perhaps there will be something that can be done. The thing I find maddening is that nobody can tell me how much of my pain is from my knee injury and how much is from the neuropathy and how much from the muscles themselves. The Pain Doc said he couldn't answer, I should ask the Orthopedic Doc, which I did do and he didn't know. He said I should consult a Neurologist, I did that a couple of years ago and walked out with another anti-depressant medication that I trashed after trying. I tried Physical Therapy and ended up with a worse injury, so I am done I think. I will keep my Dermatologist, my Gynecologist, and my Oncologist, and of course my General Practitioner. Other than that, it all seems rather futile.
The Dental Diet is a very good book to go back to over and over, I was re-reading some of the parts you mentioned and noticed the mention of the link between low Vitamin D and Calcium and the release of the parathyroid hormone. Do you think that is where your parathyroid problem came from? I am fascinated with his meal plan, I like recipes and enjoy reading over them. I am going to try some of them, "Avocado Egg Boats", "Israeli Eggs", and the coleslaw recipe, to mention some. As I said, this book inspired me to actually eat the liver I had in my freezer! His recipes make me happy because there are many things there I like anyway. For example, If I am eating chicken I like the thighs. Low-fat diets stress only eating the breasts, I don't like them at all. The Vitamin K2 story is very interesting, with all the detective work that was done to figure things out, and it is such an important part of the nutritional puzzle. After reading this book, it also makes me think it must be very challenging to be a vegan and try to work all this out. You might keep your eyes open for some pasture-raised organ meat, a litle once in a while wouldn't hurt you, and might be beneficial.
The north-eastern part of US is having very stormy, snowy cold weather too, I heard a meteorologist speak yesterday about a great similarity between this weather pattern for north-east US and Europe, with a weather pattern that existed in 1962. He thought this was fascinating, but the bad news is a continuing pattern was for a stormy March! On the other hand, we here in the middle of the US are having quite balmy weather for a few days, the nights are cold but the days are very pleasant with a cool breeze. I will chip away at some more gutters today, and maybe burn some more leaves; and whatever else turns up.
Hope you get to stick your head out today! Talk soon,
Love, Mary
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Hello Mary,
The snow has vanished from Exmouth after it rained all day yesterday with the temperature above freezing. It is still bad in parts of Devon and in the north of the UK.
I shall be so pleased to get these stitches out tomorrow and shall probably try to postpone the lymphoedema appointment for Wednesday as it seems pointless. I think the surgery on my arm will take some time to heal and I have been told it will take twelve months for the muscle to get back to normal.
I do understand about the differences in insurance.
Thank you for that excellent description of your visit to the pain clinic. When, oh when, are these doctors going to stop pushing drugs? Congratulations on escaping from there. I do know the names of those antidepressant neuropathy drugs and all their terrible side effects. The one that is very common here is amitriptyline (generic name) and it is very dangerous. The GPs tried to give it to a friend of mine for post herpetic neuropathic pain from shingles. She refused it and rightly so. What I cannot understand is why they are pushed when the side effects must be well known to them. I suppose the attitude is that they can always give you something to counteract the side effects and so on and do forth. These drugs are also used on diabetic patients for their neuropathy. It is a bit much that a prescription was made out. It is such a waste.
I think that nerve pain is quite difficult if not impossible to cure. As I have said many times before, I was told by my oncologist, GP and a couple of podiatrists that there is no cure or even relief from chemotherapy induced peripheral neuropathy in the feet.
Some on the forum say the B vitamin complex are good for nerve pain. I am not sure what to think about this.
It looks as though the experts have not got any real answers for you about your knee pain.
I am not sure about the cause of my parathyroid problem and it being overactive. I cannot remember when I got my vitamin D level tested through my breast cancer surgeon and she wrote back to say that the results showed an excellent level of vitamin D and the person who had tested it said I was to be congratulated. I all I know is that the breast cancer surgeon also my endocrinologist said that the hyperparathyroidism had definitely preceded the breast cancer. I do not think I shall ever get definite answers to any of this, but I am definitely linking it all up and think that, gum problem, hyperparathyroidism, breast cancer are all somehow connected. I also think the mole on my right arm is somehow connected to radiotherapy treatment.
I am still dipping into the Dental Diet book. I have been looking at the last chapter, chapter 11, and find the recipes very interesting and quite simple to carry out. I do not do a lot of cooking and try to eat food in its most natural form and I like to eat as much raw food as I can.
You have picked up on some of the recipes that caught my attention. In fact, all three of those that you mentioned caught my attention.
I was interested to know that you liked chicken thighs because I read in the book that chicken breasts (which are pushed more than other parts) are the least nutritious.
I agree with you that the vitamin K2 story is very interesting and very important. I just hope anyone reading it does not mix it up with vitamin K1. I noticed that my Solgar Bone Support supplements for osteoporosis have K2 in them.
I do not know what vegans would think about all this. Yesterday I was in the local natural food store in Exmouth, catching up on shopping that had been delayed by all the snow. By the way, it was pouring down with rain and I was soaked. Raymond and I do the shopping together and it is important at the moment because I have been told not to carry any heavy shopping bags in my right hand. I was talking to the women serving as I know them quite well. Some are vegans, some are vegetarian and they are quite interesting. I do not really know the details of what they eat and how strict they are. I asked them about bone broth, because it is being recommended in the Dental Diet. They did not really have an answer to this but the vegetarian alternative would be to add agar flakes to thicken a soup. I do not know if that would have the same effect.
I do not think I shall ever eat meat and poultry again. I do not miss it and I do not think it is good for cancer patients in general. That is just me.
At the moment I am keeping to my own nutrition pattern with little change except for more emphasis on fermented products, especially sauerkraut, kombucha drinks and tempeh. I want to add kimchi and kefir if I can, but coconut kefir is too expensive.
People here are talking about the winter of 1963, which I do remember well. I was at university in Leeds and the weather was awful, but Leeds was always quite cold. I do think the media has talked the weather conditions here far too much. The main trouble was that people took no notice of the advice to remain at home and they clogged the roads with their cars. People lately in England seem to have no respect for obeying rules or being courteous. When the media starts talking about the 'spirit of the blitz' I have to switch off. By the way, the supermarkets had empty shelves yesterday. There seems to be no moderation. People had obviously gone in and bought way over the top. Again, we have here a general attitude of 'I'm alright, Jack'!
That is about all for now.
Love.
Sylvia xxxx
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Hello Chelsea,
Thank you for your PM and for your kind words.
I was sorry to read that you have been diagnosed with invasive ductal carcinoma (IDC) and that you have triple negative receptors (ER-, PR-, HER2-). Have you been told what stage you are?
I can understand all your anxiety and fear and I can tell you that we all have these kinds of emotions when we are told we have breast cancer. I can understand your fear and anxiety because at 33 you are young for such a diagnosis and it comes as a shock. I can understand your emotions all the more since you have two children.
First of all, please stay off the internet and please stay off Dr Google.
I do not know where you have been looking to find people who are surviving breast cancer with triple negative receptors, but there are plenty on the forum. I have been doing this thread since 2010 and I have found that once patients have got through their treatment they are anxious to get on with a normal life, and just disappear. I am sure that most of them are out there enjoying their lives.
I always say that I am not impressed by patients who just disappear and do not have the courtesy to say they are moving on and thank you for the support. It is good if, as a few do, they pop in on anniversaries to let us know all is well.
Do not take any notice of being told that your diagnosis is worse because it is triple negative. The treatment of surgery, chemotherapy and radiotherapy, or a combination of these is the same whether you are hormonal negative or hormonal positive. When you have finished this treatment you will not have to take drugs such as tamoxifen or aromatase inhibitors for ten years, with all their side effects and I have always seen this as a positive thing.
Take everything slowly, get what stage you are and ask what your breast cancer consultant surgeon and oncologist think is the best treatment for you. Stay with us so that we can try to help.
Sending you very best wishes.
Sylvia xxxx
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Hello HappyHammer,
I was wondering how you are since you sent a PM asking about nutrition. It would be nice to hear from you.
Best wishes.
Sylvia xxxx
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HI Sylvia,
My tumour was actually quite large but the surgeon is confident that he got it all. I'm in London where we have, if anything, an oversupply of hospitals so the postcode is good. I like my surgeon and trust him, though I hope I shan't have need of his services again! All the bruising has gone but I am still a bit sore. I find having to sleep on my back uncomfortable, having always preferred the side.
An old college friend moved to Exmouth two years ago on retiring and I went to visit her in July. I liked it though found it a little old-fashioned. Being so handy for Exeter is good. She tells me that she was unable to get into her car after Storm Emma as it was literally frozen solid.
Susie
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Hello Susie,
It was nice to hear from you and to know that you are happy with what your breast cancer consultant surgeon did.
From the point of view of hospitals, I agree that London is a good place to be.
It will take time for the bruising and soreness to go.
Can you remind us what the next step is and could put your details on your profile. With so many different people posting, the details help us to distinguish one poster from another, otherwise it gets in a bit of a muddle.
It is true that Exmouth is old-fashioned and the town centre has not moved with the increase in population. Apart from cities like Exeter, Torquay and Plymouth, Exmouth is the largest town in Devon and yet we are lacking in so many facilities that are available in smaller places. We could do with some better shops and we certainly need a better library and more choice of schools. I think we have a very inward looking town council and East Devon District Council as well as Devon County Council do not care about Exmouth. They want our money but they do not want to give us facilities!
My husband and I came here in retirement in 2002. We have seen Exmouth go downhill. We are London born but left there after schooling.
The snow did cause a bit of chaos here but it has all gone now.
Please let us know what your next move is with treatment.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I have just read through the latest email from Chris Woollams. I was wondering whether you had received yours and what you think about it at first glance.
I think I am getting frustrated with so much contradictory information about certain foods. It gets so confusing.
I finally had my stitches removed today and they really needed to come out. The nurse put some Steri Strips across the scar to strengthen the wound. I do ho[pe it is going to be alright.
I shall not be going to the lymphoedema clinic now until Monday March 19th to give the scar time to heal.
Life is slowly getting back to normal here after the snow, but we do need some sunshine.
Love.
Sylvia xxxx
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Mary and Sylvia
I appreciate your keeping this thread going. I sometimes get frustrated with other tn threads. They focus on things other than support. I know each has to find his own journey. That being said, I really do appreciate how this thread is kept on track with being supportive and informative. Yet not opinionated.
My stroke therapy is coming to an end. I am walking, talking exactly on schedule with my age. Lots of room for humor.
Mary I still struggle with my knees. They were horrid before cancer therapy. The worst one seems to be more annoying since rads and Taxol. As usual we hear it's not necessarily a side effect. Funny whatever I mention, it's usually 'not' a typical reaction. Well, it is for me.
My lymph edema was diagnosed right after radiation therapy. My left arm. It was slight when I started. Now it's at least double the size of my other arm. When I miss therapy it begins to ache and itch. I now have a machine by Tactile industries. It's like a suit that massages the affected areas. It has really kept my arm at bay.
With that being said, I have a mild case as well in my upper mid section. Right below my mastectomy area. The machine and therapy help that from swelling. I find this the worst of the things i've had to handle post op. I wear a sleeve and glove all day. It's comfortable, cuts down on the swelling as well.
Beautiful flowers lilyp6. They brighten the day.
Hanieh you look so beautiful. So nice to see you enjoying life.
Val
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hi everyone
Have has a dark week this s week! Due for my next onco app and terrified. Bloods all good but let of aches and pains in shoulders and back. Physio says it's my posture and highly likely that it is but still I stress!! I have also developed a tickly dry cough over the las week which I have had on and off for years that comes and goes but you can imagine what I keep think.
Other than that everyone keeps telll me how good I look and my bloods done last week were all good! Need to keep my mind there and not in a bad place. Two weeks until we head to KL! Can't wait! Thought u might like to see the pic my clever daughter took on the Sydney roa
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