Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary and everyone,
I have finally found the time to print out a page from the LSN information pack that I have. This page asks What is lymphodema and why does it occur? I hope you can rad the writing.
To Mary, I finally heard from the GP surgery just now and I am off to see a GP at 5 pm. This is not my regular GP, which does not make me happy.
Best wishes
Sylvia xxxx
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Hi everybody
Tomorrow I'm going for mastectomy. I hope I can manage it. My daughter, husband and mother are not good.
I need all your prayers and positive energy. I don't know what to expect. How can my life be without a breast. My daughter loves my breasts and kiss them all the time. She doesn't know I'm going to miss one of them. Still, she's crying badly.
My surgeon recommended lumpectomy again but I didn't accept it.
Hope everything goes well.
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My last pictures today.I seem to be really happy with my students.d
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Hello Hanieh,
Thank you for your post. I am just posting to say that we shall all be thinking of you tomorrow when you have your mastectomy. You are strong and you will get through all of this, just like you did with a lumpectomy. I think you have made the right decision with a mastectomy. It is hard for you because you are such a young woman, but you will be alright. When I had my mastectomy my breast cancer consultant surgeon told me it was a straightforward operation and would last about 45 minutes. You will see that you will recover quite quickly. If the routine is the same as here, you will have drains in to clear everything. I was in hospital for five days, until the drains were clear. Often, today, women go home the same day, with the drains in, and have a nurse come in to deal with it. I was shown exercises to do the day after the surgery and these exercises are very important.
I know your mother, husband and daughter will give you all their support and I know you will be strong for them. You will still be the same lovely caring person and excellent teacher that you are. On the thread we are all proof that there is life without a breast.
We shall all be thinking of you and sending all our love.
Thank you for the photographs. You look like a very happy group.
Fond thoughts.
Sylvia xxxx
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Hanieh - wishing you the best for your surgery tomorrow and hoping it goes smoothly. Also praying for a speedy recovery.
Sylvia - a fair number of clinics and doctor's offices here in Vancouver have what is called a "no-show fee" - so if for example you are scheduled for a mammogram and you do no show up you get billed for $75 - however, if you cancel within 24-48 hours (this time varies from clinic to clinic) there is no charge. I like this system because it is a waste of people's time and resources if people simply do not show up. There are so many people waiting to get appointments, I think it fair enough to have a consequence if one does not keep the appointment. I hope you get things sorted out with your arm, and that you will have a clear goal as to how to manage the lymphodema. Thinking of you and wishing only the best for you.
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Hi, Angie
I'm glad it looks like they will start your radiation therapy soon. I think it's wise to wait until your skin heals more, we all have to deal with different challenges going through our therapies. Hopefully this way your skin will stay intact through the treatment.
My RN niece gave me a printout about a trial of acupuncture done comparing it with orthodox treatment. It was lengthy, but one of the findings seemed to be that if Peripheral Neuropathy caused by Chemo (CIPN) is severe, then acupuncture wouldn't be of much help. But if it wasn't too bad, it could be beneficial. The researchers thought that was perhaps because the treatment needed intact nerve systems to work properly. I myself have found it beneficial for reducing the symptoms of tingling, pricking, stabbing pains in feet and legs; I have not found it helpful with the feelings of weakness in my legs. So in my (non-scientific) opinion it helps but it has its' limitations.
Talk to you again soon, love, Mary
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Hi, Sylvia
I'm glad you had the visit with the GP, even though it is not with your regular GP. Let us know what happened there.
I had a visit with dermatology office yesterday, there too I could not get in with the doc herself, she is too busy; but I saw the nurse practitioner because of a couple of scaly spots on my head that seem to persist. Although wouldn't you know, yesterday it was hard to find them, they were much smaller! Anyway, the doc came in too, so it's all rather confusing. The upshot was she had the nurse-practitioner freeze the spots and she will look at them again in March.
I wonder what is going on with the color changes in your hands, did the GP enlighten you at all about that?
As far as considering surgery or therapy on my torn shoulder rotator-cuff, I am quite frustrated over the whole thing. Like you, I am worried about having a big surgery on the right side of my body, since it is my mastectomy/lymph node removal side. Plus I have been warned it is a long recovery and painful too. So I was excited about the stem-cell therapy, but I called that clinic which sounded so promising; and I am told that since I have had cancer, I have to be a year past remission. I told the woman on the phone that with BC, and TNBC, one is never really told "remission", but if one is lucky, "NED", (no evidence of disease). She repeated what she said, and told me if my oncologist would send records of my treatment, and say that I am one year past remission, they would treat me. So I called my MO's nurse, and she hemmed and hawed and said she would send them any tests, scans that would be helpful but the word remission is not on my chart, as I already knew. So that is sounding doubtful too.
I had not heard about the prospective EU army, would that be a melding of France's army, Germany's army and so on? I did think that Germany didn't have an army, but I don't know......I get a bit confused with UN forces, and NATO forces, and so on.
I am really jumping around here, but back to the lymphedema, I think that by the time you get to that clinic, you will know more about the subject than the people who are supposedly going to treat you! Thanks for posting the image of the body so we can get a visual of how these systems work together.
I was also glad to see the return of Chris Woollams to my inbox, everything has been so busy I haven't really missed him, but it has been a while since his last post and I look forward to going through it all.
Will also look forward to hearing your story about GP!
Talk to you soon, love,
Mary
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Hi Hanieh,
How can it be that you look younger than all your students, or at least the same age? Such a lovely group of young ladies you are!
So today you are having mastectomy, I think you have made the right decision after all not to just have another lumpectomy. I can understand how you feel somewhat, I am older than you at 65 and I still miss my breast! What about the reconstructive surgery, is that an option for you? I did not opt for that at the time because of the very poor health of my husband at the time of my surgery, it was just too daunting to face a long recovery with limited movement. As far as the mastectomy itself, it is not a difficult surgery to recover from, I hope you have an easy time of it too, and you have your family to help you through it.
Do you know what will happen next, if anything?
I think of you so often, and send my warmest wishes for your quick recovery from surgery.
Love, Mary
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hello I'm ok. They take the Tyrone and the nodes around. Everything is good with me . I'm home take care of my self.
Abrazos
Marias
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hi Mary,
When I went for my acupuncture this week, the doctor told me that if I could feel the needles when she punctured me that meant my nerves are still working, and that there is hope for recovery. If I didn't feel anything, then she said that was a potential problem. Hopefully she is correct because I felt the pricks.
Hopefully you can get into the reasesrch, otherwise the surgery is a long road. Throwing positive thoughts out for you to get into the trial.
Hannieh,
Thinking about you today, and hoping that your surgery went well, you your recooperation goes smoothly.
Maria's,
For somebody that just had surgery you look great. Wishing you a speedy recovery too
I go see the wound doc tomorrow, fingers crossed I get the okay for my mapping.
Angie
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hannie my best regard for your surgery and post surgery. You look really beautiful between your ztudentz. Lo look so young and happy .
Abrazos
Marias
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Hello Everyone,
There is so much going on here. I'm taking a little break to post.
Angelica 25, I'm glad to hear that your toes have improved with the acupuncture.
Sylvia, I'm glad that you shared the artists that you liked. The music we grow up with makes such a big imprint on most of us. I recently learned that a family friend met Elvis when he was in the Army.
Thanks for the reminder about injections and risks, and also for the lymphatic chart. I like the detail on the chart about exercise and manual drainage.
I appreciate your recommendation about signing up for the emails. I have to limit my "cancer info intake" so I probably won't be requesting the emails yet. For me it works best to be informed, but not immersed in these things. As you already know, I prefer to escape into (unrelated) books, recipes, and into travel when I'm lucky enough to do it.
Hanieh, I agree wholeheartedly with Sylvia and Mary's advice to you. You are strong, and you will get though it. And I agree that you are doing the right thing by not having another lumpectomy. I hope your surgery went well, and that you are recovering, surrounded by family. I loved the beautiful pictures of you with your students.
Marias, You are looking so happy and radiant. I'm glad that surgery is behind you. I hope you're feeling great today.
Abrazos
Pam
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Hello adagio,
I was interested in what you had to say about the health system in British Columbia. I do agree that the health system has to get tough with patients who do not show up for appointments. I do agree with fines. If patients do not turn up they cannot really need the treatment. Our NHS loses lots of money in this way.
This week has flown by and I do not know where it has gone. I have not had much time to think about lymphoedema. I did go to see the GP on Tuesday but I shall talk about that when I have more time at the weekend.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
I am just going through the posts to acknowledge them as this week has flown by and I have not had much time to myself. I hope to catch up at the weekend.
I did have a good appointment with the GP, who is not my usual GP. It was very interesting, actually and I shall write more about it at the weekend.
It looks as though all the health care professionals have too much work. It seems to be there are too many patients and too few medical professionals.
I do understand your reservations about having a big surgery on the right side of your body. Let me know if you have any success with the stem cell therapy. I was glad to know that you spoke up about the medical world do not use the word remission. All of us that are 'clear' are in a state of no visual evidence of disease.
The EU army would be made up of recruits from the 28 countries of the EU and that includes us, as we have not got out of the EU prison yet! All this reminds me too much of Hitler and the Third Reich. The EU is dominated by Germany and that does not seem right.
I shall post everything that I can find about lymphoedema. I think it should have more dominance when talking about breast cancer and after effects.
I shall post more at the weekend.
Love.
Sylvia xxxx
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Hello Marias,
Thank you for the photograph. You look really good and I can see joy in your eyes.
They certainly did not keep you in hospital for very long.
What do you have to do post surgery?
Look after your self.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your post and for your kind words of appreciation. It is good if we can learn things from the thread.
I can understand what you mean about being informed but not immersed. That is very wise. There is a lot of information out there, more, I think, sometimes, than we can take in. if we have basic information that can be enough. I think you are right to escape into unrelated books, recipes etc. You are quite the philosopher, Pam. I enjoy your posts.
Love.
Sylvia xxxx
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Hello Hanieh,
I hope everything went well today, that you are resting well and ready to move forward.
Sending you very fond thoughts.
Sylvia xxxx
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Hello Kathy28A,
Thank you for your PM. I shall be answering tomorrow when I have more time. I am behind with things because my husband and I have been helping a friend and neighbour who has been in a lot of pain with a foot problem.
I hope you can do something peaceful and relaxing during your days off.
Be strong for your sister, be positive. She will get through this.
Sending fondest thoughts.
Sylvia xxxx
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Hi Sylvia, Mary and everybody here
Thank you so much for all your kind words. It's 24 hours since I said goodby to my old perfect body and have to live with the new one. Actually, it's not that bad. At least I'm sure that malignant tumour is not next to my heart..
I've my drain until Monday and will go back to work on Tuesday. Although it was a shock to meet my fear, I think it's not as bad as I have thought. I've put everything in God's hands and hope for better days.
My daughter doesn't know I don't have one breast. I dont know whether she can handle it or not.
Mary, I'm younger than most of my students. In fact, everything has happened too early in my life including cancer.By the way, do you listen to Jeol Osteen? His sermons in YouTube are what helping me throughout these days and nights.
Now, I'm waiting for my pathology report in two weeks.
Need all your prayers and positive energy.
Hanieh
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It's me right after my recovery.
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Hello Hanie. You look very Good after your surgery
I hope you are not in pain. With the kinds is always better the true. Here maybe are more woman who go through this.
Is really a short time to take a rest. Only a week. Why?
My best regards to you
Abrazos
Marias
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Hello Mary,
You were asking about my visit to the GP surgery on Tuesday November 14th. As you know, I did not see my regular doctor, a lady doctor, but I did see a male doctor who is the senior partner at the surgery. He was perfectly fine and a very good communicator. I showed him my arm, especially on the palm side, and he said straight away that it was not cellulitis. He said that the skin had thickened because the lymph was going slowly through the system and he likened it to thin orange peel. It looks as though I just have to wait for my appointment on December 5th at the lymphoedema clinic. The way he explained my hands going red intermittently was a bit difficult to understand. I think he meant that the hands were going red because the blood and lymph in the hands were finding it difficult to separate out. That was a relief, too, because it reminded me of the reddening of the hands when on chemotherapy. The hands are fine except when I feel too hot and then they redden. It looks as though heat is the enemy of lymphoedema. I am avoiding doing too much cooking and am keeping the temperature in the apartment as low as it can be comfortably. The doctor did prescribe some tubigrip but the size he gave me is too small, as I thought it would be. It is far too tight. I had already bought some when I first started having problems. I got measured at the pharmacy and bought the recommended size. The doctor spent quite a long time talking to me and had a very nice manner. I have discovered that it is better to get the last appointment or near the last to get more time.
I am just waiting for an appointment, doing my massage and exercises and now wearing the tubigrip sleeve that I have made for myself. I cannot see that the compression sleeve that I shall be given at some far off date will be much different.
I went three times to the local pharmacy to pick up the contents of my prescription but they were never there. In the end I gave the assistant the slip back and told her to forget it and that I would sooner go to buy things than waste my time any more. The pharmacy was queueing and there was an half an hour wait each time. It is busier than a fish and chip shop!!
There you have my saga.
The Brexit saga drones on and I think we should walk away from those unelected villains in the EU. They just want a load of money off us. I think that both sides are trying to stall everything until 2020 when we are due to have a general election. In the EU the bossy bureaucrats would prefer to do business with the Labour leader, Jeremy Corbyn. The Labour party is all over the place when it comes to Brexit. They really are pro-EU and do not believe in border control. They believe in open borders and that we are all citizens of the world.
That is about all for now. I have books, magazines and leaflets piling up to read. I hope to make some progress this weekend.
I hope you have a good weekend.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your posts and for the lovely photograph.
I am sure you will make a good recovery, and, as you say, you know that the tumour has now gone. I hope the drains will be clear on Monday and that you can get back to work, although that seems rather quick. You do need time to recover from the strain on the body of surgery.
At least back at work it will keep your mind occupied and focussed on your teaching.
What is the next step for you in your treatment?
Will you need chemotherapy or radiotherapy? When you feel up to it, it would be useful if you could update your details on your profile.
I do hope you get a good pathology report.
Take care of yourself.
Love.
Sylvia xxxx
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Hello everyone,
I wanted to say many thanks to those of you who have been posting this past week to support those in need.
Thank you Mary, adagio, Pam, and Marias.
Angie, I do hope you will be able to go forward with your treatment very soon.
Best wishes to Val, Rhonda, Kathesward, Lou, 4everStrong, Galway, 53Nancy, and LoveAndLight in London UK.
Have a good weekend everyone.
Best wishes.
Sylvia xxxx
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Hello Hanii,
You look really well after your surgery.It is a lot to go through at such a young age.It always makes m heart hurt to see young people facing this.You are strong and children are so resilient even though we worry about them so.I am glad you enjoy Joel Olsteen and he brings you comfort.Sending you much love and prayers.
Rhonda
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Hi everybody
Sylvia, Mary, Abrazos,Maria's,Rhonda and all the others that can not remember their names: thank you so much for all your kindness and support.
I still don't know what my treatment would be. Maybe in two weeks everything will be clear. I hope for good pathology report.
Rhonda, the only one that can give me peace of mind at the moment is Joel Osteen. I think I'm somehow addicted to his speeches. If only I could see him and talk to him. His mother had terminal liver cancer about forty years ago given a few weeks to live. But today she is healthy and happy.
Not only Jeol Oteen, but Nil Donal Walsh, L Louis Hay, Debri Ford, Cathrine Ponder, are the writers who have changed my perspective of life completely.
I deeply hope everything goes well and smoothly and see a lot of good days ahead.
Love
Hanieh
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Hello Mary,
I am really tying up the loose ends with what I was saying about my visit to the GP, the one who is not my regular doctor at the surgery.
Besides having a good look at my right arm and assuring me that it was the lymphoedema and everything was fine, he made a few other comments, and I am not quite sure how they came up.
First of all I know you will be interested to know that this doctor said it was not true about not using the arm on the side of your body where you had treatment for things like injections and blood pressure. He probably made these comments because I had said I had always made sure that I did not use my right arm for such things. He told me that on one occasion someone else had said this to him and he had phoned up an oncologist about it. That oncologist had said it was not true and that it was more to do with the anxiety from nurses that we were told not to use the arm where we had had surgery!!!
It makes you wonder what to think. That comment is just from one oncologist.
All I know is that I shall continue to have any injections and blood pressure takings in my left arm. It makes sense to me not to take any risks with the arm on the side of where I had surgery.
I do remember my neighbour, who used to live opposite me in the apartment complex, and who had had a double mastectomy, having all her injections in the feet, because she had two arms that were probably vulnerable!!!
I have decided, anyway, that I shall not be having any more flu injections because of what has happened to me recently with the lymphoedema, but that is my own personal decision and I do not wish to influence anyone else.
The other comment from him was about acupuncture. I do not know how this came about, because I would not have mentioned it, because I have never had it and so cannot comment. The doctor said that he had had a patient who was in a lot of pain with her upper shoulder and all kinds of pain killers had been tried, to no avail. She had had some acupuncture and that had cured the pain.
I know you have had acupuncture and continue to have it, so I thought this would be of interest to you.
What are you doing for your Thanksgiving celebration? Are you going away for it? Do you indulge in Black Friday? You know that the Brits love to copy the Americans, but we always have to go a bit further. It looks as though here in the UK we were having Black Friday all last week!!! People are probably having a spend up on their cards before Phil Hammond, the Chancellor of the Exchequer, tolls the bells of doom and gloom with his budget this Wednesday.
Last night, at 9 pm UK time on BBC2, there was a brilliant programme entitled My Country: a Work in Progress. In this drama, adapted from the National Theatre production, writers Carol Ann Duffy and Rufus Norris use the testimony of people, in the wake of last year's Brexit vote, to question whether there can ever be a United Kingdom. The emotional and amusing opinions from people of all ages across the country on both sides of the debate are combined with the speeches of politicians.
The country was divided up into different parts, including Britannia as a person. The parts were Northern Ireland, East Midlands, Cymru (Wales). South West, Caledonia (Scotland) and North East. The acting was brilliant and the words they spoke were from recordings of comments made by real people in the country.
I do hope you will be able to have a look at this. Different regions are at a gathering convened by Britannia for "the sacrament of listening".
Thinking of you and sending all my love. I hope to see you on the thread again soon.
Sylvia xxxx
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Hi Sylvia and all here,
Thanks for your posts, I was out Friday night and most of Saturday, I was looking over Chris Woollams' post this morning and thought I would link to a couple of articles about sugar and cancer. The whys, the whats, and the hows.
I will respond to your posts later, I wonder why everything seems so busy lately? Or is it just that it takes me longer to do things??
https://www.canceractive.com/cancer-active-page-li...
ttps://www.canceractive.com/cancer-active-page-link.aspx?...
When you look at these articles there are more links to follow, on and on.
Talk to you again soon, love,
Mary
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Hello Mary,
Thank you for your post.
Like you, I also feel very busy and I do not seem to have enough time in a day to do what I want to do.
As for sugar, it is not something that I want in my diet and I think it is too prevalent in everything. I buy very little food where I need to read labels, so it is not a problem for me. As you know, I live on fruit and vegetables, emphasising green vegetables, some oily fish, mainly wild frozen salmon, nuts, seeds, pulses and beans, unsweetened almond drink, soy yoghurt, plain unsweetened, organic with live cultures, prunes, and 100% Montezuma dark chocolate for a treat. I use kelp and green Nori sprinkles on my food for iodine and have a few organic oatcakes from time to time. As you know, I do not eat convenience foods, meat or poultry, dairy products, and I steer clear of sugar and alcohol. This is what suits me and I firmly believe that each of us has to do as we choose with our lifestyle.
There are no guarantees with this disease.
At the moment my mind is preoccupied with this lymphoedema problem. This afternoon I clicked on Active Topics and was surprised at how many of the most recent posts were to do with some kind of games etc. I then noticed the forum Lymphoedema and just had a little look at it. I was surprised at how active it is and how many people seem to have problems with it. I concentrated on looking at the thread from the Moderators and printed off some of the useful information. It has made me realise that not enough attention is given to us by our consultants when we are first diagnosed. It was certainly not mentioned to me. It looks as though there is no consensus about why it happens to some women and not to others.
By the way, when I posted today about the rest of the visit to the GP surgery, I forgot to say that the doctor, when talking about what he was told about the myth of not using the arm on the affected side, he said that, if it were a matter of life or death he would not hesitate to inject me into the bad arm. I thought that was a bit over the top!!!
I have not had much free time this weekend, but I did manage to look at the BBC magazine entitled Focus – science and technology, December issue. On the cover among lots of different headings, I saw in bold the heading A Future Without Illness – why personalised medicine is coming and how it is going to help us beat disease.
Another heading on that cover was Rewild Your Diet – how eating like a hunter-gatherer makes you healthier.
Off the topic of disease and nutrition there was also Flying Cars and Robot Butlers – future tech that is closer than you think.
I think this is a good all-round magazine.
I do hope that Marias and Hanieh will now be able to look forward and free their minds of all this worry.
I do hope the week will be good for you and look forward to hearing from you.
Love.
Sylvia xxxx
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Hello everyone,
I have just been looking through all the posts from November 1st and see that there are quite a few people we have not heard from for a while. I do hope all is well with Val, Rhonda, Kathesward, Lou, 4everStrong, Galway and Nancy53. I do hope you are all keeping well. If you have decided to move on, it would be nice if you could let us know. If you are having problems and need some support, you know that we are here for you. We are not doctors but we have all been through the cancer journey.
Sending everyone best wishes.
Sylvia xxxx
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