Calling all triple negative breast cancer patients in the UK
Comments
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HI, Sylvia,
It has been another very busy week, I am looking more and more forward to leaving here for a little while.
A friend of mine has been hospitalized for the last week, it has been quite hard on her. She apparently caught some kind of virus a week ago, and had diarrhea and vomiting to the extent that she got extremely dehydrated. She is 73, and not very strong to begin with. She couldn't walk and was unable to use her phone, and was disoriented on top of it all. Several of us phoned her over the weekend, but when she didn't answer we assumed she was out with another friend, which she often was on a weekend. Her brother found her on Monday and took her to Emergency, and she was declared very dehydrated, given a bag of fluids and sent home. She was home for a day, I took her some food, and she seemed better; but later that night her brother took her back to Emergency, they suspected a heart attack, and she was admitted for heart tests of all kinds. To make a long story short, she did not have a heart attack. She was diagnosed with the beginning stages of congestive heart disease, and kidney disease. I spent a quite a bit of time in the hospital, and with her, out of concern, but have now removed myself from being involved here, because it seems the family and she would rather not know what is really going on. I am trying to be smarter with my avoidance of situations that I have no control over that just cause me stress, and am going to take a break from it.
It has been a strange week all around. My brother was quite worried, he was waiting for results of a test to see if he had esphageal cancer, which is a very bad one to have. It came back that he did not, thank God, but he has bad acid reflux. They upped his medication and he is feeling much better.
A good friend is awaiting results for a test on fluid in her uterus, she is quite worried too about the possiblity of uterine cancer. You can see what has been absorbing my mind this week! Hoping everyone has good results and they can breathe easier!
Probably many of us have thyroid problems of varying degrees, it was so good that you and your doctors delved into the issue of your parathyroid to your benefit. Moans, bones and groans fit a lot of people that I know, including me at times!
Chris Woollams must have taken a vacation this summer, he will probably get back soon, and then there will be a deluge of posts.
Going to close for now, love,
Mary
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Hi everyone,
Hope everyone is enjoying a restful weekend.
Mary,
Sorry to hear you went through a tough week. Hope the coming week gets better. Wish I could learn to be like you an avoid added stress by learning to separate myself from it.
Marias
I wish I knew how to swim, your pool looks so inviting
Galway,
How is your chemo going.
Sylvia
I have IDC. I did not have any pet scans before treatment which makes me nervous because when they did the lumpectomy they found small LVI but no lymph nodes. My BC and MO said the tx would be the same regardless of the findings. Nervous about a recurrence but as my husband keeps telling me focus on treatment now and not to worry about the future.
Angie
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Sylvia,
I got the results of my bone density test, it was in the form of a congratulatory letter and said the results of the test are "within normal limits." Hurrah for now!
Mary
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hi everyone
Winter is almost done here and the days are get warmer thank goodness. I've still been having some fairly dark days but thankfully the better ones are getting more frequent. The aches pains are still there but slowly subsiding. Would just love to feel normal again. But I don't think that will ever happen. I have my first mammogram in September and I'm absolutely terrified . Keep feeling lumps and bumps every time I palpate. Slightly sore on the ribs on the unaffected side but I think it's because I've been constantly checking. Im Good deal lighter and I can feel the ribs on that side so u keep think it's a lump ha ha! I can't feel the ribs on the other side so can't compare. Think that's because of the rads!
Start to get my appetite back and I have put on a couple of kts which I'm happy about. Anyway onwards we go one foot in front of the other! Hope everyone is well!
Cheers
Kat
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Hello Mary,
I can see that you have had a very busy time trying to help your friend who has been most unwell. I think you are right to try to distance yourself, as it will all be taking a toll on you. We who have survived breast cancer must look after ourselves.
I was glad to hear that your brother had good news from his test and that he does not have oesophageal cancer.
Make sure that you look after yourself, Mary.
When I was posting about an overactive parathyroid, I forgot to mention that the main diagnostic symptom with this is a high parathyroid hormone level in the blood. Mine was very high. This is dangerous. As soon as I had the surgery, which was on the throat, and the surgeon removed the lower right parathyroid, on which there was a benign adenoma, everything normalised within minutes. I did get my parathyroid level checked once after that and then the surgeon told me I did not need to do this any more.
I think it has probably done us a lot of good having a break from Chris Woollams' emails, as I think we are probably trying to absorb too much information. I think all we can do is eat as healthily as we can, keep physically and mentally active, and hope for the best.
As for the newly diagnosed, I think they should find out what type of cancer, the tumour receptor status, the stage and the grade. Along with this they need to know the intended treatment, surgery (mastectomy of lumpectomy), whether chemotherapy is needed or not (whether chemotherapy will be before or after surgery and why), what chemotherapy drugs are to be used and why, and whether there will be radiotherapy or not.
I think it is important for the newly diagnosed to ask as many questions as possible, because answers to those questions will help to carry the thread forward and help us all to keep up to date.
That is about all for now. Do not overdo things. When do you leave for New Mexico?
Love.
Sylvia xxxx
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Hello Angie,
Do not worry about not having had scans. All oncologists work differently.
Your husband is right and you must concentrate on your treatment. What is going on at the moment with that treatment?
Live in the present and the day. What you have to do now is get through your journey and get back to normal.
There is nothing we can do to stop recurrence. You will find this easier as time goes on.
Keep to a healthy diet with lots of fruit and vegetables, oily fish, nuts, seeds, pulses and prunes if you like them. Avoid sugar, alcohol, processed and junk food.
Keep physically active if you can, and keep your mind active. Learn to laugh a lot and avoid negative stress.
Keep us up to date.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am glad your bone density test seems to be in order, although I am not quite sure what "within normal limits" means. It sounds much the same as being told your blood pressure is average or normal according to the charts and much the same for when you have a blood test.
I am sure anyway that you are doing your very best to keep your bones normal. I try to treat my own bone problems mainly through diet. I have some seeds, pumpkin, sunflower, linseed (flaxseed) and whole sesame seeds (unhulled). I usually have two tablespoons of one of them each day. I grind them up and use them as a base for Sojade organic soy yoghurt. I also have a variety of different nuts throughout the week (whole raw nuts, almonds, Brazils, hazlenuts, cashews, walnuts, pecans). As for vegetables, I eat quite a bit of bok choy which is supposed to be high in calcium. As for supplements, as stated before, I take calcium citrate (Solgar Bone Support), vitamin D3 capsules (Solgar 4,000 IU), magnesium citrate (Holland and Barrets own). Finally Strontium Citrate (Life Extension). I do hope all this is doing some good, but I know it is better that anything the medical establishment has to offer.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Kath in Australia,
It was nice to see you on the thread and I shall post a bit more later. I am going to take a break.
We now have two more women with similar names, Kath28A and Katie420.
Best wishes.
Sylvia xxxx
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Hello akl of you
My breast is still red around the nipple. Tell me if Thiago happen to you before the surgery
Thanks
Abrazos
Marias
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Hi Ladies,
I am sorry for not posting much but I have been reading all your posts regularly. I just don't have much time to share.
My DS started his nursery class and I have been busy sending and picking him up from class everyday. While he is in school, I am slowly getting back to those things I put on hold when I undergo active treatment and I was not strong enough to handle then. I have been cleaning up and decluttering one room after another. I keep myself busy so I will not think much.
In the afternoon, I napped when my DS napped so I have enough energy to keep up with him. At night, when DH comes back from work I will sit down with him to watch TV and before I go to bed I read all your posts to keep me updated. This is basically my routine for now.
My neuropathy in the fingers and toes have subsided so far but I am feeling some joints and muscle pains. Some days I feel fatigued but once I start walking I feel more relaxed. My pains only comes when I am idle. I am not sure if anyone of you experienced this as well.
Love the garden photos, Sylvia. You looked amazing Adagio & Marias. Sorry to read about you neighbour, Mary. Hi,Pam, how are you?
To our new posters, welcome and I am sorry you have to join us here. You will find a lot of useful and valuable information here as I have when I went through all my treatment. Take things one step at a time. Keep looking forward.
Best regards,
Lou
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Hello Kath,
I am so glad that you are keeping in touch with us post-treatment. So many women leave the thread when they have finished.
I can understand that they want to move on, but I feel strongly that they should give something back in return for the support they have received.
I was sorry to read that you are still having some really dark days, but it is still early days for you and you must be patient and give it time. As time goes by you will feel more and more normal.
Please let us know how your first mammogram goes. It is normal to be nervous and frightened, but you must remember that the mammograms are there to help detect anything that seems wrong so that it can be dealt with.
It is good that you have started to get your appetite back. Eating properly will help your immune system to recover from all the trauma and fight your corner for you.
I hope the departure from winter and the coming of warmer days will lift your spirits.
Kath, you need to add your radiotherapy treatment to your profile.
Sending you fond thoughts.
Sylvia xxxx
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Hello Marias,
I see that no one has posted to answer whether they had red around the nipple of the breast. You must remember that we are all different and different things can happen to us during treatment.
This redness is something about which you should ask your oncologist or breast cancer consultant. There must be a reason for the redness. Is it a reaction to the surgery, some kind of allergy to something, reaction to one of the chemotherapy drugs? Talk to your medical team. They will know if it is something about which to worry. Is it something to do with the type of breast cancer (ILC).
Thinking of you.
Sylvia xxxx
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Hello Lou,
It was nice to hear from you and to know you have been keeping up with the posts.
I can imagine how busy you are with your young son and how you are kept on the move with him. I am sure that your days must just fly by.
As you know, I am a minimalist so I truly believe that cleaning and de-cluttering is very therapeutic. I have seen so much wasted time and so much misery in people who keep hoarding stuff and are then overwhelmed by it all. I have some favourite sayings, "If in doubt, throw it out" and "You cannot take it with you when you go". I can see that you are very organised in that you are cleaning and de-cluttering room by room.
Thank you for the kind words about the photographs in the grounds of the apartment complex where I live.
Thank you for your kind words about the thread and for your words of encouragement to the newly diagnosed.
Keep well and enjoy your time with your son. Children grow up so quickly.
Sending you fond thoughts.
Sylvia xxxx
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Hello everybody,
Since we have had a few new people join the thread, I thought I would write out what our group is looking like now, to help everyone to get to know one another.
I want to thank the following people for their strong support of the thread over the past few years.
Thank you,
Maryna8, U.S.
adagio, Canada
Rhonda, U.S.
Pam (lilyp6), U.S.
Val (Valstim52), U.S.
Kath ((Kathesward), Australia
Lou (Lou2016), Singapore
4everStrong, Paris, France
Marias, Colombia
The latest ones to come on the thread are,
Kathy28A, London, U.K.
Angie, U.S.
Maria12
Galway,
Katie420,
I am not sure where the last three live, so perhaps you might like to tell us.
I think that Amanda, U.K. and Hanieh, Tehran, Iran, have left us. They were strong posters but must have decided to move on. We wish both of them all the best.
Thanking you all for keeping the thread going and up to date.
On September 12th it will be exactly seven years since I started the thread.
Wishing everyone good health and happiness.
Sylvia xxxx
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Hi Adigio and all the BC FAMILY
Beautiful photos! I have to say that coming from Galway. I started my Chemo yesterday AC,doing ok today. Had a couple of hours yesterday evening when I didn't feel so good......it passed. Met my Oncologist today and he talked about a 50% of recurring when I had a figure of 70% in my head. It set me back a bit but only a bit. I haven't had any scan to date other than the Mammogram and I asked him about the possibility of me getting an MRI and he said there is no evidence I have secondaries so a scan of no value. He wasn't going to budge on that even though I questioned that if I don't have a scan how can we know? He lost me in his answer and agreed maybe a scan after treatment. I would like to know if anyone else has had this experience or is it just my oncologist?
Thanks for taking the time to read this x Galway 2017
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Hi Sylvia,
Thank you for your words of encouragement. Didn't feel too good yesterday pm after my first AC cycle but better today. One day over and one day at a time. I have to give myself the Neulasta Subcutaneous injection this pm , to reduce the duration of neutropenia (low white blood cell count ). Was told it causes a lot of joint pain so was prescribed Ponstan for pain. Hope you are keeping well. Galway 2017
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Hello Galway2017
You have got through your first infusion of AC, so that is behind you now. You will feel tired and below par and this can build up as you continue the infusions. Remember to drink plenty of water to keep hydrated and also to rest if you feel the need. It is especially important to drink plenty of water in the first few days. Remember to take the anti-nausea meds that you are given to take home with you and take in the first few days. These should take care of any nausea or vomiting. I went through the whole six months of chemotherapy feeling fairly normal. Ginger and lemon tea with a little grated root ginger is good.
We all react differently so you will learn to cope with whatever happens.
Neulasta after each chemotherapy seems to be standard now, to try to avoid low white blood cells. This was not offered when I was going through chemotherapy. I have heard from women on the thread that this Neulasta does cause joint pains.
I think it is helpful to try to eat healthily and as normally as possible. I had plenty of prunes and dried figs to keep my red blood cells where they should be and also to avoid constipation which is another side effect of the chemotherapy treatment.
I have not heard of Ponstan. Is it a brand name for something quite common?
Keep telling yourself you will get through this. Remember keep hydrated, rest as much as you need and keep looking forward.
Sending you fond thoughts.
Sylvia xxxx
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HI, Galway
Glad you are started with your chemo and it's going okay. My cancer center would not allow me to inject the Neulasta, I had to drive (be driven) in for my shot the day after for every cycle, since my white cell count went much too low after the first round and I was hospitalized. It would have been easier to do it myself.
My oncologist (MO) also doesn't order scans unless I complain of pain or difficulty in some area. After I told her I did not trust mammograms because mammogram didn't see my breast tumor, (had MRI 3 months before I found lump) she did order an MRI last year after the mammogram. I will ask for one this year too. I have not had a PET scan, I was told that unless the docs are looking at tumors they know or suspect, the test will show too many false positives. It's very good news for you that the doc doesn't think it has traveled anywhere else.
I had a suspicion you were from Ireland!! Hope your next infusion goes very well, AC made me very tired.
Talk to you soon! Mary
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Hi, Sylvia
I looked up Ponstan, it is mefanamic acid. It is a NSAID (non-steroidal anti-inflammatory drug) and I have never heard of it before. It must not be commonly ordered here, unless it has another name it goes by.
As to my bone density test, I am taking "within normal limits" as good news, since the letter started out by congratulating me. I wish they would include some kinds of numbers with it, I would be interested to know if I am in the higher or lower end of "normal limits."
I know Hanieh has probably moved on from here, I do miss her, she became sort of like a little sister.
Talk to you soon, love,
Mary
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Hi, Marias,
I cannot really answer about the redness around the nipple. I had my mastectomy before the chemo, so no longer had a nipple there. I hope you get an answer to your question.
Talk to you soon, Mary
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Hi, Lou
Good to see you here, glad you and family are doing so well. You are still not very far away from your chemo treatments, the aches and pains should get better with a bit more time. Aches and pains were not mentioned to me as a side effect of chemo, but many women here mention having them, more than a coincidence. I also have some lingering neuropathy, and I do feel it at night when I sit down to rest, more than during the day when I have other things on my mind. I have arthritis in quite a few places too, that seems to be better as long as I am moving; once I stop, it is sometimes hard to get going again till things loosen up. In my case, I already had arthritis before chemo, it is just a bit worse now. I am also older now, hard to figure all these things out exactly.
It sounds like you have worked out a good routine for now, you are taking advantage of rest times and still being there for your DS and DH.
Talk to you again soon, Lou! Mary
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Hello Sylvie and all of you.
I don't start the radio session because of the red around my nipple.
I get some cream with cortisone and some pills of anti allergy.
I will start letrozel before the radiotherapy session for 5.years =.2.5 mg per day.
Have a nice day
Abrazos
Marias
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Hello Marias,
Thank you for letting us know that you are not going to start your radiotherapy treatment because of the redness around the nipple. That is a very wise decision from your oncologist. I do hope that the cortisone cream will solve the problem, along with the anti-allergy pills. What strength cortisone cream have you been given?
Thank you for letting us know that you are going to be taking letrozole for five years.
You will know, of course, that this is an aromatase inhibitor. When will you start taking this drug? Have you been informed of side effects? The brand name for letrozole is Femara, or at least that is the one I know. You are probably on this because of your age. Tamoxifen, I think, is now mainly used for pre-menopausal women.
Wishing you all the best.
Sylvia xxxx
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Hello Mary,
You are right about Ponstan. All drugs seem to have various brand names.
As for your bone density scan, I have had only two of them in the past. I seem to remember that, in the past, when the results were given to me, they were in the form of a chart, showing the spine and hips. I was given them straight after the scan. The thing about these scans here in the UK is that the figures are based on the healthy bones of a thirty year old woman or younger. That does not make much sense to me. I would think that after cancer treatment there will often be problems with bones. On this thread, over the years, I have told women that if I were them I would get a bone density scan before and after cancer treatment. If there is a problem with bones, it is just as well to know. The same goes for ECGs. I had them before and after chemotherapy. Since we know chemotherapy drugs can damage the heart, it is as well to know our status before and after chemotherapy drugs. I do not know about doxorubicin, epirubicin or cyclophosphamide, but I was told by my oncologist that the taxane drugs (paclitaxel and docetaxel) can damage the heart. I was on docetaxel (Taxotere) and was told it was less damaging to the heart than paclitaxel (Taxol). My scans were clear before and after treatment. I have also read that Herceptin (trastuzumab), used for HER2+ receptor status, also damages the heart.
It is a pity that Hanieh has moved on. I invited her to join our thread when I found her a bit lost somewhere else on the forum.
When are you leaving for New Mexico?
Love.
Sylvia xxxx
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Hi, Sylvia
I will be leaving for New Mexico on September 4, and returning home on the 10th. A short trip, but I am looking forward very much to it. It is considered high desert climate, but in mountain foothills, so I am anticipating drier air, not this thick, humid air we have to breathe around here.
I was also given a heart test before chemo and pronounced good, but they did not give me one after chemo ended. At the time I had so many other problems I didn't think about it, but later I thought it odd they wouldn't compare results before and after. Although, I have read a little about it, and it is said that sometimes the heart issues, if you have any, may not start bothering you for some time, maybe years. Nevertheless, I think there should be a before and after checkup. There are several areas where I think my cancer center did not perform at the highest level. Hindsight is great stuff!! I was also given (docetaxol)Taxotere instead of (paclitaxel)Taxol because they said it was easier on the heart, in that respect, I wonder why anyone is given the Taxol drug if it is harder on the heart??
I have been wondering why this summer seems so busy this year, all I can come up with is that I feel more like following through with many activities than I have for a few years. The last few years I could beg off a lot of things because I didn't feel up to it, I am having a harder time doing that this year! Which is a good thing, I suppose.
Another friend of mine has come up with cancer, in her liver and a spot on lungs too, but all started in colon. She is on a chemo that allows her to feel well and keep working at her job, she started chemo in July and will be on it till January. She will not lose her hair with this, and seems to be doing very well. I do not know her prognosis, she is not sharing that. I can only hope for the best. It is worrisome because it is the same mix of tumors that my brother-in-law had, but I do think her tumors are smaller than his, and will perhaps be operable after chemo.
I also came across a medical article about CIPN (chemo-induced peripheral neuropathy), I found it interesting and tried to post it, but it was then blocked. The thing I found helpful in it was to know that there is now a lot of research going into the study of CIPN, and the docs are realizing how many women are suffering with it after their chemotherapy, and it is a large percentage, I believe between 40 and 50%. In not all cases is it permanent, but it is in quite a large percentage of that number. They are finally coming to grips with the fact that it really does affect QOL(quality of life) in many women/men.
I am off for now, have a great weekend!
Love, Mary
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Sylvia and all,
I thought I should not forget to mention that Monday August 21st the US is going to see a total eclipse! The area of totality will be over where I live at around 1 PM. The area of totality is a narrow band that is crossing the US from the Northwest to the Southeast, and great crowds and traffic jams are anticipated and I believe, already starting. (You can get a good view in other areas, but the area of totality is the place to be, apparently!) It is big business, since we are in a prime area, everywhere there are stands selling t-shirts, hats, cups and dark glasses!! Schools are closed and many businesses too, and people are worried about their children and pets looking at the partial eclipse during the moments when the sun is not completely covered. Once it is totally covered it is safe to look without glasses. Quite an uproar! (The other plus: it is something for the media to talk about besides Donald Trump!)
Mary
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hi everyone
Just wanted to,update you on my treatment. Just finished six of 12 Taxol. Had an allergic reaction again. They gave me more antihistamine and steroids waited twenty minutes and then I was fine continued treatment. My wound is still open. My wound doc said if it doesn't change by next week, he's going to put the wound vac back on. So fr Ustrating.
Mary
I live in Massachusetts and we should see the eclipse around 1:30. Hope you have a safe trip
Angie
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Hello Angie,
I was sorry to read that you had another allergic reaction with your Taxol treatment. The good news is that you recovered quickly and that you were able to continue. Keep looking forward and telling yourself that you are halfway through that treatment now.
I do hope your doctor will be able to solve the problem of your open wound. It should not be like that and must be very frustrating for you.
I have just noticed that in your details your actual stage is 1C. Can you explain what Tubular means and then stage 1B? I do not quite understand that.
Will you be having radiotherapy?
Sending you best wishes.
Sylvia xxxx
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Hello Mary,
I do hope you will have a good break in New Mexico.
I do think it is important for new patients that they take command of their treatment. First of all, if they feel they want it, they should get a second opinion about their diagnosis and treatment. I think it makes sense to get a heart scan before and after treatment, as well as a bone density scan (DEXA scan) before and after treatment. We all know that cancer treatment can affect our heart and bones, so it is common sense to know what the status is on these before and after treatment. I think you also need before and after scans to make sure there is no spread of your cancer to other parts of the body. This is just my own opinion.
I was sorry to read that you have another friend with cancer in her liver and a spot on the lungs. I do not know if a prognosis is given about metastatic cancer unless you have just a short time to live. I have two neighbours here with metastatic cancer and they just seem to be on and off treatment, a lot of it in pill form.
I do not know what to think about neuropathy caused by chemotherapy treatment. My oncologist, my GP and podiatrist told me that it was incurable.
I hope you get to see the total eclipse.
As you say, this has given the media something else to talk about other than Donald Trump. Here in the UK we alternate between Donald Trump and Brexit. What is going on in the US with all these protests and counter-protests? It looks as though people are wanting to erase past history. It all seems ridiculous. It is the same here with people protesting about statues. Getting rid of statues will not change what happened. It looks as though what we have been told about when India got their independence in 1947 is far from the truth and it was a total mess. I am convinced we are not going to get Brexit.
I am fed up with politicians of all persuasions. I get my news from RT and from programmes such as Sputnik and Crosstalk Rules. On these programmes I listen to people with real brains.
That is about all for now.
Love,
Sylvia xxxx
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Happy Sunday Everyone,
Thanks, Sylvia, for the information from The Clever Guts Diet book, about TV being bad for us, and suggesting that we try to at least be active when we're watching. I have to admit that I use electronics quite a bit before bedtime. My Kindle is electronic, and I like to read before I sleep. I've also been using an app called Luminosity, which contains brain games to help with chemo fog. My scores have been improving in attention, speed, problem solving, and more slowly, in memory. It would be much better, I know, if I left the electronics out of bedtime, but I've been sleeping without any Ativan, or herbal remedies for a month or two now, which is nice.
Mary, I hope you enjoy a great view of the eclipse, and that you have a great trip. Sewing was completely beyond me, too. If there are still such classes in school, which I doubt, it would be great if they could just be practical skill classes, rather than break things down between masculine and feminine. When I was in junior high, a favorite teacher gave me Gone With the Wind to read, and I loved it. As far as chemo side effects go, I think it's so hard for the doctors to tell which things are which, and they tend to downplay any issues that aren't life-threatening.
In my case, I think I stopped stretching too soon after my BMX, and I'm pulling or tearing shoulder muscles while trying to resume my regular range of motion. I've been stretching a lot more, and I've seen a small improvement.
Lou and Marias, it's good to see your posts, and everyone's pictures. I hope things are getting better for you every day. Welcome to our new posters as well. I think everything we share can potentially help someone else, whether they're in the same stage of treatment or not.
After I took my dog to the dog park, I was able to do a 60 minute Zumba class today. My Fitbit tells me I burned over 300 calories. I'm also trying to prep as much food as possible for the workweek, so I can eat well when I'm feeling exhausted. We are hosting a double baby shower at work on Friday, so I'm getting things ready for that as well. I'm bringing the party punch, the balloons, and a fruit tray. I'm also looking at some fun things to do when we're in Scotland, which is less than a month a way. This is a typical day "off" for me when we don't have anywhere to be. If I had kids, I would have even more to do. For now, I'm ready for a nice nap.
Enjoy your day,
Pam
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- 285 Who or What Inspires You?
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- 50 Immunotherapy - Before, During, and After
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