Calling all triple negative breast cancer patients in the UK
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Hello Gill,
Just a word to say that those vasodilators such as candesartan and losartan belong to the group of drugs known as angiotensinII blockers, as opposed to ACE inhibitors. It is mindboggling where all these names come from.
Love.
Sylvia xx
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Sylvia, Gill, Paula
I have more news this week. Last Tuesday I went for my second chemo infusion, when the Oncologist came in to see me before the infusion, he told me I would not have chemo that day, and would not have anymore chemo. He expained, I had genetic tests arly on, and there were more tests ordered which looked for Gene mutations, but they took longer to get back. Well, the results showed I have something called an EHRG-mutation, and of course I have a rare form which tends not to respond to chemo. So, no more chemo.
There's more, I have also gone from Stage 2 Lung Cancer to Stage 1. At the time of Biopsies there were seemingly 2 tumors, but the Pet Scan showed only one, so the smaller one was not a tumor.
So now the only treatment is surgery to remove the tumor, and that's it. There is only 1 drug for this and it is only for metastatic cancer. At Stage 1 I am not a candidate.
I do wish I'd had this info bfore the 1st chemo, since it has quite worn me out, I don't blame the Doc since he was acting on the best info he had at the time. I have to say I'm glad not to have any more chemo!
Well, what do you think, my friends?
Talk to you later, love, Mary
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Mary -
I’m glad that you will not have to endure any more chemo. As well as it does kill cancer cells it is so extremely hard on one’s body and mind! So glad to hear the staging has gone from 2 to 1. That is so encouraging! I know that lung cancer like breast cancer has a variety of types but my sister in law was diagnosed 7 years ago with lung cancer, no chemotherapy was prescribed, only surgery. She had her surgery and met with her oncologist for a couple of years but she is doing great. She’s a professional singer and even with the lung surgery she hasn’t given up singing she still has plenty of oxygen saturation. There are times she gets a bit out of breath but nothing that keeps her from doing what she wants to do. I think all of the news is encouraging. Do you know when surgery is and how it will be done? Do they know how much of the lung they will remove?
Love- Paula
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Thanks Paula, that is good to hear. I dont know anything about the surgery yet, I have appointments with 2 of the surgeons. The Onco said to go to whichever is ready first, to move ahead with surgery. Apparently all surgeons are very busy.
I'm glad your sister-in-law is doing so well!
One of my consults is 4-16, one is 4-29.
Later, Mary
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Hello Mary,
I have just read your posts with great interest and am truly amazed at what you have had to say.
I am very glad that you do not have to endure any more chemotherapy as that will enable you to start regaining your strength.
It is also good news to know that you have gone from stage 2 to stage 1 with your lung cancer.
All this just shows you how intricate and complicated the human body is.
I do hope you get your surgery soon.
What do you mean by 4-16 and 4-29 with reference to your consultants.
I heard from Gill privately and I have to answer her today. She had told me she had given up posting on the thread. She thinks and I share her view that this forum has been spoilt with all the changes. I was posting on the thread to say I was giving up as well. I am much agrieved by this.
It will be 19 years in June since I was diagnosed. That is not bad since I was told initially that it was a poor prognosis!!!
Take care. Lots of love.
Sylvia xxxx
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Hello Paula,
I just wanted to thank for popping in to support Mary.
I was wondering how you are. How are things going in your daily life in the USA?
Thinking of you.
Sending love and best wishes.
Sylvia xxxx
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Hi Sylvia
I wrote on email since I hadn't seen anyone post here in quite a while. I have set the date for Surgery for May 7. The surgeon will remove my left lower lobe of lung, apparently that is standard when the cancer is contained there. I will be in Hospital for at least 4 days afterwards. I dont know what to expect after, but I will probly learn more next week.
The 2 dates were with different surgeons, my onco said to go with whoever called me first.
I see what you mean about the thread, I posted on April 8 and nobody responded for about 10 days, so I sent you and Gill an email. I would have included Paula but don't know her email. The thread looked pretty quiet, I poked around and didn't see much going on.
I'm very glad to hear from you, I was getting worried. I am Going to post this now before I lose it!
Love to you Sylvia, hope all is well!
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Hello Mary,
I had not heard from you so I decided to check the thread and saw that you posted on Tuesday April 23rd, just a couple of days ago.
I was glad to read that your surgery date has been set for May 7th and I shall be thinking of you on that day. We all know that waiting to find out about our treatment is very stressful and that it is a relief to get definite dates and definite decisions about the treatment.
I know that Gill, like me, does not like the new forum that bc.org has introduced and that we had both decided not to post any more because it was not the triple negative thread that I initiated in 2010 and that had become a very active and very warm and homely place for all of us to come together. I was really upset that they cut off the real number of views that had built up over all these years and nothing has been done to rectify that. It is nonsense to have the posts outnumbering the views. The views should be nine times the posts, judging by past experience.
I know that Gill is also very busy.
How are you feeling since the chemotherapy was stopped?
In order to get back on the forum I just Googled breastcancer.org and was quite surprised at everything that came up. I saw a few questions there that people had asked about breast cancer and what is happening now with treatment etc. I shall probably have a look at some of the answers later.
We seem now to be a group of four, you, Mary, Gill, Paula and I seem to be the surviving warriors.
Take care of yourself, Mary. Relax and know that we are with you and willing you through this!
Lots of love from this strange little island of ours which is nothing like the one that Raymond and I grew up in!
Sylvia xxxx
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Hello Mary, Gill and Paula,
I do not suppose you are keeping count of the comments and views, but I am. The comments are 16,658 (we called them posts). The views are really 102,537 and not the silly 11,393 coming up on the system.
I do not think our thread will ever get back to the haven it was for us.
Thinking of the three of you and hoping you are managing to get some daily enjoyment in this very strange world in which we are living. The news is horrific in the UK.
Love.
Sylvia xxxx
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Hello everyone,
I was just having a look at the thread to see if there was anymore news of Mary and was surprised to find that there had been 300 views in two days. If any new viewers have there story of triple negative breast cancer to relate, I would be interestd to hear from them. It would be beneficial for patients to know how the treatment differs from in the past. it would be useful to know about new drugs.
I am heading towards 19 years since I was diagnosed with triple negative breast cancer and in the UK with this kind of cancer everything seemed quite new.
Best wishes to all of you.
Sylvia xx
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Hi everyone
I will have my surgery on May 7th, and I have been trying to get things ready since I will be activity-restricted for a while. I won't deny I'm nervous about this surgery, I hope the Doc can do small incisions instead of one large incision on my side.
We are having the heavy Pollen season now, it's kind of miserable, breathing the fluffy green stuff and constantly cleaning it off seating areas, car etc. Ready for rain!
As to people viewing thread, I guess everyone is looking for something, but all the Threads look quiet to me.
Talk to you later.
Love Mary
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We're here for you, @maryna8 ! And yes, we're trying to get them more active again. Pollen season can be really miserable, although all the blossoms and green are so welcoming!
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Hi Mary-
I'll be thinking of you tomorrow as you have your surgery. I can imagine the apprehension and the anxiety it would provoke from this type of surgery. Many good thoughts and prayers will be sent your way. I'll also be thinking of the nurses and the doctors that will be taking care of you during and after the surgey. When you feel up to it let us know how things are going and how you are feeling.
Love - Paula
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Silvia & Gill -
Spring is in the air here. We have been getting a lot of rain and the spring flowers are in glorious bloom. I love it! The pollen in the air has been a bit hard to deal with but that is something that happens every year. The bluebirds built a nest in my birdhouse that hangs near my kitchen window and now the babies have flown the nest, the chickadees have taken advantage of the nest now. They are busy going in and out of the the bird house, I have no idea if the babies have hatched and I do not want to disturb their endeavors.
I havent felt very well the past couple of days… either I have a urinary tract infections or kidney stones again. Just not feeling well can bring about anxiety and worry about what is going on. Its a bad time to not feel well, I've got vegetables and flowers to plant and I'm not up to it.
I hope Mary will keep us informed with her recovery from her surgery.
Hope all is well in the UK… I know the world seems very concerning right now.
Love Paula
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Hello everyone,
I was just having a look at the thread to see if there was any news of our friend Mary. I have not heard from her and I was wondering how she got on when her surgery was due on May 7th. Gill sid something about this surgery having been postponed, or I have misunderstood something. Mary, if you are checking the thread please let us know what is happening to you. Gill, Paula and I are thinking of you..
I think Gill is not going to post on the thread. As for me,I do not quite know what to do. The thread meant so much to me and I let so many good and interesting people. it has left a big hole in my life.
I am not happy that the numbers of views were completely truncated from the thread. I still keep an eye on this.
The comments (posts) still seem accurate and they are 16,664.
The views are still wrong and the correct number is 149,976.
People are still looking at the thread and between April 25th and today May 14th, 1,049 people have looked at the thread.
If some of our regular thread people are still looking, and new people have joined, please post and voice whatever you have to say.
Many thanks Paula for your post and kind words to Mary. She needs all the support she can get.
As for Gill, I am sure we would all be glad to see you on here. Thank you for your email. I have had so much to do that I have not had time to reply.
Hello Debra (Inspiredbydolce), how are you getting on these days? I so enjoyed your posts.
Sending best wishes to all.
Sylvia xxxx
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Hello Mary, Gill and Paula,
I have written a private email to Mary to find out what is happening with her. This silence is unusual. I hope she will see this post and added to my private email I hope it will encourage her to get in touch. Gill is still not posting on the thread but I am sure if she hear from Mary she will let me know.
There are still plenty of people looking at the thread but no one has been inspired to post. It would be so interesting to hear from someone going through triple negative treatment right now and compare how much change there has been over the years. I am slowly creeping towards 19 years since diagnosis in June. I think it was June 20th but I would need to check earlier posts. It seems such a long time ago.
Love to all.
Sylvia xxxx
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Hello Paula,
Sorry you're not feeling well again. UTIs really knock the stuffing out of you and can do so much damage.Seems a bit soon to have kidney stones again. I hope you can get a medic to have a look at you very soon.
Yes, once we've had cancer our mind can go to very dark places when we become unwell. I've had some concerns about my digestive tract recently, couldn't get an appointment with my doctor, but the problem now seems to have solved itself - fingers crossed.
The weather's been lovely and sunny here in Norfolk. Flowers blooming everywhere and pollen count high. Love this time of year when everything comes back to life.
Take good care of yourself Paula.
Love,
Gill xxx
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Hello Sylvia,
I'm going to post on the thread occasionally. I'm afraid time is in such short supply these days, but I wouldn't want to lose touch. We've lost far too many old friends already.
It's a great shame that so many are coming to the thread to read comments, but not adding their own comment. We can only learn about the personal impact of breast cancer, new treatments, mastectomy versus lumpectomy, new meds to relieve the side effects of chemotherapy and other peoples' ways of coping with side effects etc, if those who are affected share their experience. I remember how useful I found this collective information.
Hope you and Raymond are well and coping with our dysfunctional new NHS! Beware the drinking water - what a country!!!
The holidaymakers have probably begun their annual invasion by now - at least they'll be a few more shops open.
With love,
Gill xxx
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Hello Gill,
It was nice to hear from you. I have decided to post on the thread. It would be so nice to revive it.
I do agree that we are both short of time. We should really try to make some time for ourselves but we always seem to be last in the queue.
At least things seem to be working out for Mary. As you say she now needs to take care of herself and get plenty of rest. She was very lucky to get her treatment so quickly. I think it would not have happened this quickly in our country.
I do agree with you that we do need people going through triple negative breast cancer to post information about how they are treated now, what drugs they are given and so on. It is the only way to make progress with treatment and we always have to think of others not only of ourselves.
I do think the whole forum is very quiet. I am not even sure how busy all those introductory threads from the Moderators are. I rarely see anything from Calling all TNs which was really the beginning for triple negative cases. I know I was inspired by that thread to start our one in order to help and give something back.
Let us see how things go. I would like to see technology take a step back and not change things for the sake of it. I have concerns about all this digitalisation which is going to complicate things more and will probably deprive us of our landlines. I am not a great fan of smartphones. They seem to be damaging children. Just because something can be done does not mean that it has to be done. I think that Ai is very dangerous.
That is about all for now. Take care.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
Just a few words to say that I am thinking of you and wishing you all the very best.
How do you manage to deal with that farm of yours? How big is it? Do you have others to help?
Here in the UK the powers that be seem to work against farmers It is unbelievable. All they seem to think about is wind turbines, solar panels all over the place. The street on which I live is being spoilt by digitalisation and lovely trees are being challenged and robbed of their beauty by big ugly telegraph poles and loads of fibre cables.
Take care of yourself and try to rest.
Love
Sylvia xxxx
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Hello Mary, Gill, Paula and others.
I just decided to have a look at our thread to see if there was any news from you and any other posts. There was nothing so, of course, that was disappointing. I did notice that there have been 591 views since I last posted on May 19th.
The score is now Comments/posts 16,670 and Real views 150,665.
I still do not have news of any great developments with reference to triple negative breast cancer.
I have now reached 19 years since diagnosis in June 2005. It seems a lifetime ago but I still remember it all very clearly and still take nothing for granted.
If any of you are viewing I would be interested to hear from other long time survivors.
One of my best friends died just recently and it came as a real shock. She had hormonal breast cancer way back in 2001, went for years in the clear and then had it spread to her bones. She survived that for many years and seemed in good health. I suddenly had a call from one of her daughters to tell me she was suddenly ill and died very quickly. it came as a shock, but made me realise even more that, with cancer, you can never take anything for granted. I really miss her.
I am now trying to support one of my cousins whose partner has metastatic lung cancer. He is having some chemotherapy and I have been talking to him on the phone to try to support him.
I do hope that someone will post and encourage others to do so.
Thinking of everyone.
Best wishes.
Sylvia xxxx
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I was remembering how I wrote my story way back in 2014 for bc.org and I thought I would post it here again in order to help patients know that they can get through breast cancer treatment. I hope this will inspire you through your triple negative breast cancer journey. Let me know what you think.
sylviaexmouthuk's Story: I Found a Breast Lump But Delayed Seeing a Doctor
I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.
I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.
I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.
That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my 18 months of treatment.
Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.
The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.
At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was estrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.
In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.
I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.
Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.
Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.
I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.
When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.
Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.
Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospice care nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.
As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.
Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.
I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can.
I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.
Most hospitals here have charities offering all kinds of support to cancer patients.
I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.
Breastcancer.org is a wonderful forum and providing a marvellous service.0 -
Hello Mary, Gill and Paula,
I cannot remember whether you have read my story or not. I do hope to hear from you.
I cannot believe the weather here today. It is just 12C, raining and windy. It is more like November.
Thinking of you.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia, Gill, and Paula
I got an email from Sylvia and realized I hadn't been here in a while. I've had a crazy year. Starting in January, I've had 2 biopsies, 1 with a partial collapsed lung. Then a diagnosis of 2 lung tumors in left lower lobe. Then a Pet Scan which showed it was actually only 1 tumor very near the airway. My Stage 2 diagnosis became a Stage 1, aggressive and growing. Then it was decided I would have 3 rounds of Chemo, with 2 chemos and 1 immunology drug. 3 weeks after my 1st infusion I went back for the second and was told it had been discovered that I had a very rare genetic mutation that had not been tested with chemo and immunology drugs. Therefore, it was decided that I would move on to surgery, which would remove my left lower lung lobe. I was glad to not have any more chemo! Through all this, I've had countless blood draws, a blown vein , lots of xrays and scans.
If anyone wants to look up my surgery it was a Thoracotomy with Lobectomy. It has been a painful experience, but I'm glad to say that, I'm 5 weeks out and the pain has diminished to being bearable, and bothersome instead of severe.
Docs say I have more weeks to month of recovery, but I'm happy with a little better each day, while still being an impatient patient. Onco said come back in 6 months for scan and that is how i will proceed. Other than that, I'm done for now and hopefully for good!
Sylvia, I would take a bit of your November weather, here it's already hot and steamy.
Love to all, talk later, Mary
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Hello Mary,
Raymond and I have both read your post with great interest. What you have been through is unbelievable and you have all our admiration and sympathy. you are a very strong person.
Being the person that I am I did look up thoracotomy and saw that it is divided into two different types, lateral and anterior. From your details it seems you had the lateral. The other one, the anterior, is much the same as the triple bypass that Raymond had.
As for the lobectomy, that sounds awful as well. Did the experts explain to you what these procedures involved before performing them?
You must be so glad that this is all behind you and I do hope that you will be able to have a relaxing time and spoil yourself a little.
I do hope that Gill and Paula will post.
I know that Gill is very busy and I know that she has more or less given up with the thread. I do check and I have noticed that people are still viewing. We need posts to get things going again. I think it is so important to keep information about triple negative breast cancer in the news. I did have a look at Calling all TNs and some posts are now appearing more frequently. I hope it does not disappear because it was my inspiration to start my own thread.
It looks as though the old treatment drugs are still very much being used, doxorubicin, epirubicin, cyclophosphamide, and the taxanes, paclitataxel and docetaxel, but of course many more have been added.
We have more rain today and cool weather. There is a General Election coming here on July 4th. Raymond and I are not going to vote. Our country is a total mess and we do not think it will ever get sorted out and certainly not in our lifetime.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia and Raymond
It was a rough surgery, I was told it was a painful surgery, but I was also told it was the best way to get rid of the tumor; by getting rid of the lobe that contained it. The lymph nodes were clear so the thought was it had not gone anywhere else.
You may find this interesting: after the surgeon makes an incision (in my case on left back area) he uses a rib-spreader to spread the ribs enough to insert tools and remove the lung lobe. There is another small incision under the left breast where they insert a large drainage tube. There is quite a bit of nerve damage in these areas, which causes pain, I'm also having a lot of muscle pain in my back I can't wait to go to my masseuse.
Another bit of info; before surgery a vent tube was inserted to breathe for me because they had to stop the lung from moving while they operated. I found that scary!
Just some reading for your weekend!
Paula, I do hope you are better! I know how you feel about your flowers, I also can't work on mine just yet, I miss it!
Love Mary
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Hello Mary,
Many thanks for your most interesting post. You have been through such a lot and my heart goes out to you. I do hope your muscle pain and nerve pain improve over time. Are you taking pain killers? I think the nerve pain will take longer to heal than the muscle pain. You will get through all this.
I do he we shall hear from Paula and Gill. You might want to send Gill an email.
Raymond and I were at the hospital in Exeter on Friday for a check up with his pacemaker etc. It seemed a very exhausting day and the roads to Exeter were very busy. Luckily we have a Community Car service here in Exmouth and we belong to that. We could not have done it by bus and we could not have afforded a taxi.
All the news here is about the election on July 4th. Most of what we are told about what the politicians will do if elected, is a load of nonsense!
Thinking of you.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia and all
Can you believe it's July already, our weather is crazy with a week of hot, very humid air followed by a few days that make you want a sweater. I'm tired of it already, and am ready for a more stable fall.
I am 2 months away from the lung surgery, I feel better because I'm stronger, but still get tired easier than bfore. My single bout with chemo has resulted in a boost in the neuropathy I first got from the breast cancer. My hair is sparse and fuzzy, and I'm still trying to be patient. On the bright side, the intense pain at my surgery site is gone, with an occasional twinge.
Right now I have what feels like a summer cold, congestion and also drainage of sinuses.
We had our 1st Presidential Debate last week and everyone paying attention now knows our President has serious cognitive problems. As a person who pays some attention through the year, I already knew that. But on the whole he has been shielded by his handlers, and the media who run defense for him. No longer, the next 4 months promise to be very interesting. By the way, Trump did well in the debate, which I was glad to see.
As With Your elections, there's no telling what comes next!
I hope you and Raymond are very well!
Talk to you later, love, Mary
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Hello Mary,
It was nice to hear from you and to have the details of how things are progressing. It sounds as though you are doing very well. Keep up the good work.
I do understand about the neuropathy. It looks as though there is no cure for this and that it is something with which we have to learn to live. I have now passed 19 years since my diagnosis with triple negative breast cancer on June 20th 2005. I still have neuropathy problems in the feet. It is quite hard to describe the feeling because the soles of the feet are numb in that they have no feeling to the touch. I did have them tested a few times with a podiatrist doing a kind of pin test. She did prodding and I kept my eyes closed and I had no reaction at all.. I test myself with my fingernails and there is no feeling. I just have a feeling of stiffness. It is very strange. I think neuropathy and lymphodema are permanent side effects of cancer treatment.
It looks as though our thread will never get back to how it was and the forum has lost its sense of community. It seems to have no soul now. It looks as though Gill is not popping in now.
As you say, the weather is strange. After all the rain we had we now desperately need some in Devon.
I shall be glad when our General Election is over tomorrow night. It has been completely boring. I have no confidence or trust in any party and Raymond and I shall not be voting.
We just live from day to day and feel that things will not improve in the UK or in the world.
Take care of yourself.
Love and best wishes.
Sylvia xxxx
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Hello deltag (adagio),
As I said in my reply to your PM I am posting in the thread.
It was so good to hear from you and to have all your news. I was glad to know that you are happy in your new home. Moving house is a very big deal. Has Vancouver changed a lot over the years? Has Canada changed a lot? We have not had a very good impression of Mr Trudeau. He is certainly nothing ike his father was.
I do hope you will have good news from your heart test. How has life been for you? Raymond has slowed down a lot. The triple bypass has taken quite a big toll on him since the surgery back in February 2020. For a long time everything was quite normal but the past six months have been quite difficult. He was diagnosed with heart failure a year ago, and although it is supposed to be mild, it has slowed him down. He gets very breathless and walks slowly and not far. Somehow we carry on. A big problem is the heaviness in the right leg, where the big saphenous vein was removed to use to do the bypass. He has lymphodema in that leg and the heaviness slows down his walking. he has check up next week with his GP.
I do hope you will manage to stay with us. It should not be this complicated for members to get to their threads or the forum.
I shall probably try to contact Gill to let her know that you have managed to find us. I find it easy now to get to the thread because I have bookmarked it. I have created two bookmarks, our thread and Calling all TNs. I just click on my avatar to see my bookmarks. I hope this helps.
Love and best wishes.
Sylvia xxxx
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