Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Marias
Your pictures are beautiful, it looks really fabulous compared to the cold wintry place I am in! I'm glad you are having a nice time with family.
I must have missed something, but am not understanding why you are taking letrozole. Since you are Triple-Negative, and I thought letrozole was for women who had hormone-positive cancer.
I liked the picture you sent to Sylvia to show her the mole removal, you are a very pretty woman. I admire you to keep up with the Nordic walking and the swimming, that can only be good for you. It sounds as though you have a very healthy routine.
My knees are painful, the shot of cortisone I received didn't work apparently. And also it seems the cold weather doesn't help.
As I told Hanieh, I light a candle for you and she and all of us when I am in church. I sang on Christmas with our little choir and I was quite hoarse, but it came off allright, I think. We did practice quite a lot, that's why I was so hoarse!
Marias, I see you soon will be finding out about some more treatment in January. I wish you the best of results with that.
I shall talk to you again soon, love,
Mary
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hi all,
My Christmas tree, from outside
Mary
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Hello Mary,
I was just going over the thread to see where I needed to catch up and I noticed that I had missed a post from you yesterday. Thank you for that link and I have just printed it off to read more carefully. It is entitled FDA clears stereotactic radiotherapy system for use in treating breast cancer.
I shall comment when I have read it.
More later.
Love.
Sylvia xxxx
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Hello Nancy,
I also noticed that I missed a post from you yesterday.
Thank you for explaining why you did not have chemotherapy. I would have done the same given that everything was clear. It is good that you have left it open as a choice if you should need it.
I was interested to know that you will be followed up by the oncologist at the end of January via Tele health conferencing. I do not think that we have that here. We do have phone interviews from the GP surgery.
You may want to add your radiotherapy treatment to your profile. It is useful for others to use as a reference about your treatment.
I was glad to know that you are going to have a bone density scan. I keep reminding people to have this done before and after treatment. Chemotherapy and radiotherapy can cause osteopenia and osteoporosis and these are serious conditions.
Sending fond thoughts.
Sylvia xxxx
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Hello Pam,
Thank you for your latest post. I was glad to know that your Christmas was good.
That is good news from your medical oncologist.
I do agree with you that people should now stop shopping. There is more to life than this. It is all over the top, especially with all the misery that is in the world. I would wish for a better world in 2018 but I know this wish will not be granted.
I shall talk to you later.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Welcome back!
I certainly do think that we worry about our husbands when we are perhaps facing our own mortality. I can understand how you felt and I can understand how Sarah's mother feels. It is even harder for her because her husband is blind.
I always seem to put others before myself, and in the past I have read how this is common with cancer patients. I also remember how my homeopathic consultant told me when she was looking after me that I had to put myself first and get rid of negative people from my life.
I do find it difficult to be other than selfless and this can often cause me to be hurt by others. I do get a lot of happiness out of helping other people.
As for the mole, on my right arm, no, I have never had a suspicious mole before. It may seem strange but I cannot now remember whether I have always had a mole in this place. I am certainly quite frightened about it and have been so since the stand-in GP I saw some weeks ago took an interest in it. It has destroyed my peace of mind. It seems ages ago now, it was October 10th that against my better judgement I went to have that flu injection, after not having one since 2005. I am almost certain it set off something inside of me. I have since learned that these flu vaccines also contain antibiotics, which are not listed. Two days later I have swelling in the right arm and have lymphoedema. Everything has been so slow since then. It took too long to see my breast cancer consultant, way too long to see the lymphoedema specialist and although the appointment to see someone at the mole clinic was two weeks, it has taken all this time to get an appointment to get the mole removed. I am concerned that cutting into the arm is going to set off something else. I have made it quite clear that I do not wish to take any antibiotics. I have read that article I mentioned, the Dark Side of Antibiotics, and how lethal they are, that I do not want them. I am not happy that we do not have a Vivascope.
That is about all for now. I see that you are busy catching up. I do like your Christmas tree.
Love.
Sylvia xxxx
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Hi, Hanieh
I did see another post in which you said you felt better and more energetic. I am glad to hear it, when we have energy we feel we can handle all the things in our lives that have to be done.
I am sorry my last post wasn't very upbeat. I was tidying up my bookcases and was looking at "East of Eden" by John Steinbeck. Maybe that's where all that came from. I do believe you will come through all this and feel well again when you finish all the treatment. You did come through your previous treatment very well.
Talk to you soon, love,
Mary
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Hi, Lou
Here is a late Merry Christmas! And have a happy New Year too!
You are working a lot of hours, sounds full-time to me, and you look happy, so that's all good. The pictures are beautiful, and the pic of your son with the city in the background is amazing. It looks like you almost have the place to yourself too.
The time goes by so fast, indeed. When I was going through chemo, I kept saying I just wanted the summer to be over, because then I would be finished. One day my husband said "You are just wishing your life away when you say that." He was right, the time since then has gone so fast I cannot keep up.
I hope you continue to enjoy your job, and I hope the new chapter in 2018 is wonderful for you and your family, and that you all will have the gift of good health!
Talk to you soon, love
Mary
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Hi Sylvia,
I wanted to comment on the link to the article in the Daily Mail that you posted. I liked that it was detailed. I think you mentioned that you don't have pain, is that correct? I see that the woman in the article did, and I can understand that this chronic condition has "taken over" her life. I can also understand that it feels like another blow, as she said, especially because there is no cure. I was confused about her "improvement," because the writer stated that her arm was 30% larger in the beginning, and 40% larger now.
It sounds like she had a similar experience to yours, in terms of the long waits to be seen and treated. It was particularly interesting that the made to measure sleeve, which applies equal pressure to the whole arm, improved the swelling in her hand.
As you say, we need more awareness and training for doctors in this area. You may already know, but the actress Kathy Bates has been speaking out about this topic. This is just one short appearance, but it will give you an idea: https://www.thedoctorstv.com/articles/2953-kathy-b... She is very frank and vocal about her cancer treatment.
I completely agree that these physical effects from treatment can destroy your peace of mind. I know no one is ever "safe," but I know that I value peace of mind so much more than I did before my diagnosis.
Thinking of you tomorrow,
Pam
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Hello Mary,
I am just popping in to say that I read that article about a Stereotactic Radiotherapy System for use in treating breast cancer. I do not really know what to make of it. It is being called the gamma pod system. It is good that it does less harm to surrounding healthy tissue, but it is stated that it has not been shown to be as effective as whole breast radiation therapy. I think that would probably put doubts into the minds of patients being offered it. I think I would probably take a chance and stick with the whole breast radiation.
It has been quite a difficult day today. A friend phoned to say that her daughter-in-law had just died of metastatic breast cancer (it was hormonal when diagnosed) just nine months after being told it had spread. I think she was about 60 and had always been healthy and strong.
A friend of mine is ill in hospital with metastases with another kind of cancer, after being in the clear for about 15 years I think.
I am not looking forward to tomorrow.
I am amazed at how big and busy this forum is. I just went through the Active Topics and we were on page 6 which was the last page of the Active Topics. It just shows you how quickly a thread can disappear out of focus.
I hope you are getting back to normal.
Love.
Sylvia xxxx
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Hello Pam,
I just noticed that you had posted. The article is the Daily Mail was very interesting but also a bit confusing. I picked up on the bit about 30% larger and then 40% larger. That makes no sense but it may be an error by the journalist.
I was also a bit confused about the made to measure compression sleeve and that she had got it on the NHS. At the hospital NHS clinic I went to, they do measure the arm in various places but it is a general size. They then have three different classes of compression sleeves which they order – class 1, 2, &3. I was given a temporary one, class 1, but was told the lymphoedemist thought a class 2 would be better. I have that now but I do not find it very comfortable. I shall see how it goes but may decide just to do exercises as I did back in 2006 when I had a bit of lymphoedema that just cured itself.
I do see made-to-measure sleeves advertised in various magazines and on the internet. They are expensive and I do not know how reliable they are.
Compression sleeves, according to the NHS, need to be washed daily after use, so they supply two and seem to renew them every six months.
Thank you for the link all publicity about this much neglected side effect of cancer treatment and other surgeries, needs publicity.
That is all for now. Talk soon.
Fond thoughts.
Sylvia xxxx
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Hello Everyone,
Mary,
I agree about the Christmas music. It's so much nicer when you haven't been hearing it for weeks and weeks. It has so much more power when you don't wear it out. My neighbor said that she got excited about Christmas, and put out all of the decorations that she had early in the month - and then was "over it all" even before the holiday.
It's probably best not to have pets, except for what must be a low-maintenance fish, if you still plan to travel. I struggle with that, because I really love having a dog, and I don't feel right without one. It's definitely a lot of extra work and expense. On the other hand, we went out for a long walk this morning. She helps me get the exercise that I need.
One of the most disturbing things to me about this cancer experience the emotional toll and burden on my husband. We are forced to think about one of us outliving the other, having shared our lives together since the 80's. One of my worst fears is leaving him alone. So as you say, we find ways to appreciate the moment, and our relative health.
I loved your beautiful, cozy Christmas tree picture.
Sylvia,
I can see the value of gathering the breast cancer patients in the UK. As imperfect and overburdened as your health care system is, you can share recommendations and information with each other.
I was struck by what you said about the quality of life in Scotland. That's really it. I'm always looking for the places that have a better quality of life. And I'm also trying to do a better job about putting myself first, and not letting people hurt me.
I got a flu shot on Tuesday, as recommended by my doctor. I tolerated it well, but I had one last year. I'm never sure if I should, and I know of course, that you had a terrible outcome. I completely agree about antibiotics being over prescribed. People here don't think anything of demanding them.
Loveandlight,
I'm glad to hear that your mother can use CBD oil with the blessing of her Onco. I did the same, and was thought it was very helpful with nausea, anxiety, sleep, and pain management. I've tried different forms of it, but less often the pure CBD than a mixture with THC. That's not as easy to get. I hope it works for her as well as it did for me.
Marias,
I wish I was as skilled as Sylvia, and could write this message in Spanish! As it is, I have to settle for telling you that I'm very glad to hear that you're keeping up with the Nordic walking and swimming at the pool. Exercise is one of the best therapies. I think that you said that you are disappointed by friends who are not visiting. I hope you can put those people out of your mind as much as possible. Keep getting stronger, and keep telling us how you're doing.
Lou,
I mostly enjoyed my holiday celebrations, but I'm happy to have some quiet time now. It sounds like work is going well for you. I always like to see the pictures that you post.
Hanieh,
I hope that you do not lose your eyebrows during treatment, but if you do, you may already know that there are cosmetic kits with templates that allow you to fill in perfectly shaped eyebrows with pencils and powder. I used one called "Kiss," though I was no expert at it.
I liked hearing about your Yalda celebration, though I know it was upsetting this year for you. I do find the idea of the rebirth of the light comforting. I'm glad that you will have classes 2 days a week. Remember that we are here. Don't hesitate to tell us how things are going.
I hope everyone has a good day today,
Pam
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Hi Sylvia, Mary, Pam and all
Sylvia all my prayers are with you and I send all my positive energy to you to have the best procedure and the best results.Im thinking of you tomorrow. I don't know why you should have that long wait. Here, we do biopsy on the same day and the result is ready in 3 days. The time between my biopsy, result, diagnosis and operation was 10 days. I know how a long wait can be so devastating. But I deeply pray in my heart everything comes to a good end.
Mary, thank you so much for all your kind words and also all the candles you light for me. I know what you mean. Problems and difficulties are indispensable parts of our lives. Yet, through all these pains and sufferings I have learned how to stay strong and how to raise myself and take one step further. When I see how others in my age bother themselves for unimportant things and spend their lives and precious moments in despair , I realize this sickness has helped me a lot to grow through its hardship.
Pam, thank you so much for your uplifting words and all your kindness and support . I'm happy you had a good Christmas. Hope you always get the best news from your MO and have a healthy, happy life for ever.
Yesterday I finally shaved my head. I think this time things are going better. It was easier for me when I shaved as last time it was so devastating when cold cap didn't work for me. My daughter also wanted to see me bald whereas three years ago, she was badly scared of seeing me bald. I also try to make a happier atmosphere at home by playing music more, dancing and keeping every day routine. I bought a beautiful wig and some nice scarves to look good at home. In fact, we have learned to make fun of everything especially my lost breast and my bald head. I hope to manage to go through my whole treatment in good spirits to keep my family in good state. Thankfully my husband is very supportive and kind. I hope to manage to overcome this disease and go on with my life again. Sometimes, I do worry and all the negative emotions come to me which make me paralysed, yet I hope to manage to decrease those moments as much as I can.
Also, I try to get additional help from Japanese way of keeping healthy by drinking 4 glasses of water right after waking up. One glass with lemon and baking soda. Also, I make a drink with lemon juice, honey, tumeric and black pepper every day and have it on full stomach. I got the receipt on YouTube. I have cotton seeds every day too. I hope all these help me and give me more chance of living my life. I really want to be there for my daughter when she needs me.
Love
Hanieh
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Sylvia, I tried to add the radiation therapy to my info, but it won't come up. Telehealh conference is a video conference. The oncologist set this up at a hospital 30 minutes away, as she said she didn't see the point of us making a four hour drive in winter for an hour long appointment. As far as bone density scan, we have no power over what tests we get. If our doctors don't think it's necessary, we don't get them. We'd have to find a doctor in another Province and no guarantee they would order tests. I am fortunate in that my surgeon and oncologist were being thorough. I am also fortunate that all our medical costs have been covered. Our only expenses have been travel costs. I am hoping the bone density scan will NOT show metastases. Doctors seem to feel I am clear at this point, but I know I will never forget the possibility of recurrence. But I am going into 2018 with a positive outlook and won't overworry recurrence until it happens, if and when. Have a great 2018 and thank you for all your support
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Dear Sylvia -- my thoughts and prayers are with you for your biopsy tomorrow - praying that you will be able to breathe in and breathe out - totally accepting this unfortunate procedure which needs to be done. I trust that your fear will be allayed and that all will go well for you during the procedure and particularly afterwards in terms of how it will affect the lymphodema in your arm. If I were in your shoes, I would not accept antibiotics either - I am very opposed to them and have been most of my life. There are times when they are essential, but more often than not they are prescribed just in case!!! Let us know how you are after the biopsy and know that we are all thinking about you and wishing only the best for you. Much love, Adagio
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Hello Pam, Hanieh, Nancy and adagio,
I have just read your posts and wanted to say thank you all for your kind words. They mean so much. I am just getting ready to go to the hospital, so I shall answer your posts later today or during the weekend to let you know how I got on.
Pam, I could not get the link you gave me.
I am posting the link to a very important article that I found on line from Nexus magazine under Health – The Dark Side of Antibiotics – shining a light on adverse reactions and hidden risks. It covers in great detail the various groups of antibiotics and their specific side effects etc. There is also a section entitled Side Effects Common to all Antibiotics. I am sure you will find it interesting.
https://www.nexusmagazine.com/articles/doc_view/362-nexus-volume-24-no-6-october-november-2017
The actual article starts at about page 21 of the pdf file.
Try to read, also, the article in the Mail on line about lymphoedema and the experience of Sharon Warnock, wife to a football manager.
Read up on line, also, about the Vivascope, which can detect whether moles are malignant or not without the need for a biopsy. I am going to be asking why we have not got one at my hospital.
If you want a really good book on lymphoedema, get the latest one, Let's Talk Lymphoedema – the essential guide to everything you need to know by Professor Peter Mortimer and Gemma Levine, 2017.
That is all for now. Talk later.
Sylvia xxxx
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Hello Pam,
Just to let you know that I managed to get the link to work today. I shall read it later.
Love.
Sylvia xxxx
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Dear Sylvia,
Sending you positive energy ! My thoughts and prayers are with you for tomorrows procedure !
I hope it all goes fast and well
I hope you all had a wonderful and blessed christmas !
Kindest,
Sarah Xx
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Hello Sarah
Thank you for your kind words and wishes.
I do hope everything will progress with your mum.
Talk soon.
Love.
Sylvia xxxx
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HI, Sylvia
Best wishes on biopsy, hope it is uneventful for the duration! We all will be thinking of you today, and I'm sure you won't be given antibiotics unless it is absolutely necessary if they know how strongly you feel about it. I'm not sure what time it is occurring, but hope you will be back home before you know it, and I also am sorry it takes so long to hear the results.
I will talk to you again soon, love
Mary
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Hello Mary,
Thank you for your post and for your best wishes. It is so good to know that other people are thinking of you and giving you support.
Everything went smoothly and according to plan and the mole has now been removed. I was very well taken care of and felt nothing at all. The NHS staff were really beyond reproach and one cannot help but admire them. I now have that part of the right arm stitched up and covered with a dressing. I have no pain but have been told that it could become painful. I have to leave it until Friday and then get stitches removed if I think all looks well. Apparently there are self absorbing stitches below the ones that will need to be removed, so I just hope they behave.
They were quite happy for me not to take any antibiotics, but they have given me some to take if I have any sign of infection. I shall have to be really desperate to take any antibiotics. The ones I have are Flucloxacillin which are for skin problems.
I now have to wait four or five weeks for the biopsy report and will be called in to get this. This will be really scary. It reminds me of waiting for breast cancer diagnosis, biopsies etc.
I have been told to try to wear the compression sleeve as soon as possible as it will help with the healing process.
The weather was really wild this morning with pelting rain and a raging storm. It was not at all pleasant in the car.
I am feeling pretty tired from the anaesthetic so shall catch up with everybody at the weekend. I am so happy to be part of this extra special group.
I shall reply to Pam, adagio, Hanieh, Nancy and Sarah over the next two days.
Thinking of you and everybody else.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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hi all
Hope u all had a fantastic Chrissy. Mine was very hectic and I have a week left before I go back to work. I am feeling physically well just lots of aches an pains and peripheral neuropathy in my hands and feet which I am learning to deal with. My head is my main problem and I still have lots of dark days with every ache and pain imagining the worst. I still have intermittent Rawling sensations under my skin which I think are nerve related
Sylvia I’ll do some digging around to see if I can find out anything about the screening we do on moles here and uploaded. It’s very hot here and we have been up to40 degrees already. The poor wildlife is suffering. I’ll just up load a couple of pics of another of our amazing sunsets and one of me and my boys! They are my sanity right now and I treasure any time I get with them. I have just re enrolled at uni and how to complete my nurse practitioner program within 18 months if all goes well.
Love to all
Kat
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Sylvia,
I'm so glad you had such a positive experience with your procedure, here's hoping all will stay that way throughout. It is a long time to wait to have your results, did you ask them why it takes so long? Maybe the system is just overloaded.
Hope you had a good rest to sleep off the drugs, they do linger a while in the body.
I am not clear on the compression sleeve, did you ever get the one that was custom-made for you, or are you still using the general-purpose sleeve? From reading different accounts, it seems like the custom-made glove makes a big difference for the good.
The weather is different all over, it sounds like Kath in Australia is having extreme heat, we here in the USA are having extreme cold, and you are having a lot of rain and wind. None of us are quite happy with it, it would be nice if we could all share a little of our weather with each other and mellow it all out!
I'll talk to you again soon, love,
Mary
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Hello Sylvia. I feel happy your procedure was good and no painful to you. Is a lot time to take the biopsy results.
I hope you been well this time with good mood and no anxiety. Did you have the sleeves now? How it feel? I hope you get better really soon.
I'm with influence now. I m taking antibiotics I had high fevers. So I hope I get well soon.
My best desire for you. You are in my mind all the time
Abrazos
Marias
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Hello Pam,
Thank you for your recent post. I do consider the thread now to be for anyone anywhere in the world. I think it is good that we can all gather together in support of one another and give help, comfort and information to anyone going through this long cancer journey. I think my fellow Brits can benefit from reading posts from different countries. Perhaps the fact that we in the group can discuss things openly without getting into nastiness. Perhaps, a big one I admit, some of our togetherness may rub off on the politicians, who seem to be making a hopeless mess of everything.
I was glad to read that all went well with your flu shot. I still think my flu shot on Tuesday October 10th started something off. I had not had one since 2005 and I do not really believe in them.
I do agree about antibiotics that are being prescribed too frequently.
I keep hearing a lot about CBD and it is in three local shops here. The bottle is very small and very expensive, so I suppose you only need a little drop of it at a time.
If you want to put some of your posts in Spanish, you can always use Google Translate.
I am feeling fine today with no pain in my arm at all. I just felt very tired but it is slowly wearing off.
That is all for now. Have a good weekend and enjoy whatever you do for New Year's Eve.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for your kind words. With all that is going on with you I do appreciate them even more.
Everything with our NHS takes time. It is very bureaucratic, but also underfunded and overwhelmed with too much demand on it. All of the staff are really dedicated and you cannot fault them. I now have to wait for the result and I intend to try to switch off it all in the meantime.
I was very interested in what you had to say about trying to get additional help from the Japanese way of keeping healthy. It is a very good idea to drink plenty of water when you get up. The body gets very dehydrated during the night. Those other drinks with lemon and baking soda, and lemon juice, honey, turmeric and black pepper sound good as well. Go easy on the honey.
I have never heard of cotton seeds. What do they look like and how do you drink them?
I can see that you are doing everything you can to get through this journey.
Remember to keep the gut healthy through having fermented foods, such as plain yoghurt with live culture, tempeh, tofu and sauerkraut. Stay off the dairy foods.
Sending you fond thoughts.
Sylvia xxxx
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Hello Nancy, adagio, Sarah and Kath,
I am still catching up and so I shall do some more posts tomorrow.
To Kath, your grandchildren look really lovely.
Best wishes to all of you and a happy, healthy New Year.
Sylvia xxxx
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Hello Mary,
I saw that your post had just popped up while I was trying to catch up on some of the others.
You are right. It is a long time to wait for results, but that is the way it often is. I did not ask them why it takes such a long time because I am pretty sure it is because the system is overloaded. Goodness only knows where these things are sent. I do remember that the biopsy taken when I was diagnosed with breast cancer was sent to Cornwall. I think the NHS is huge and is very fragmented. Did you know that the NHS is the biggest employer in the world? That cannot be good for the patients. Small towns are suffering as their hospitals are closed down and everything is centralised. There does not seem to be any understanding of what patients go through with fear and anxiety while waiting for results. This latest saga with me started back on October 10th and I have one appointment with the lymphoedemist and the appointment this week to remove the mole. I am really looking after myself and following any instructions given.
I have no complaints with the staff. They are completely dedicated.
Today on the news the head of the Royal College of GPs has recommended that patients look up their symptoms on the internet and try to decide what they have. This is a recipe for disaster.
My compression sleeve did get sorted out. They are not really made to measure. The lymphoedema specialist measures the arm in different parts really to work out the girth and how different it is to the normal arm. There are then three different classes of compression sleeves, class 1, 2 & 3. I was given a temporary one, class 1, and then two class 2 were ordered and they arrived pretty quickly at my home address. The class 2 strike me as very tight and I shall discuss this at my next appointment on January 30th. I am wearing it but while my scar recovers I shall wear nothing or the class 1.
I now feel perfectly normal, but tired. The strange feeling from the anaesthetic has worn off and I have no pain.
It is certainly true that the weather around the world seems to be extreme. Here in the UK we are having colder and wilder weather than usual. Can you remind me exactly where you are in the States?
Are you doing anything special for New Year's Eve and New Year's Day? Do you celebrate twelfth night on January 6th? Are you making any New Year's Resolutions?
Wishing you a happy, healthy New Year.
Love.
Sylvia xxxx
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