Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sarah,
I was sorry to read that your grandad had died and I can understand how busy you have been getting your mum and dad through that as well as supporting your mum through her cancer treatment. Please say hello to your mum and tell her we are all thinking of her.
Thank you for asking after me. The rash has gone and all is well with the lymphoedema. I was at the hospital today for a check up with the lymphoedema, and the hospital was very busy. The lymphoedema nurse did the work of measuring the arm, and said I had made good progress. This appointment was only the second one in six months. I just have to carry on as I have been doing, get two new compression sleeves, continue the exercises and the moisturising care. I must say the lymphoedema is not bothering me and I have just been carrying on as usual.
It sounds to me that your mother may be experiencing lymphoedema and really she should be seen by a lymphoedema specialist nurse. It is important not to delay in treating it. My information is that GPs know next to nothing about lymphoedema and generally do not diagnose it.
Physiotherapy will help but my information is that you need compression sleeves.
I do hope your mum will soon have finished chemotherapy. These taxane drugs, Taxotere or Taxol, really seem to be very, very harsh on patients. They do cause a lot of side effects, including lymphoedema, and including peripheral neuropathy in the hands and feet. That joint and teeth pain must be awful.
I was glad to know that your mum is on a lower dose of steroids, as they have nasty side effects and can cause osteoporosis and weight gain. I was glad to know that vitamin B6 has helped her.
Remember that the fatigue and side effects do build up as you have more and more chemotherapy sessions.
Please let us know the results of the genetic blood test.
Keep with us, love.
Sylvia xxxx
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Hello Hanieh,
I was so pleased to read that you have finished your radiation. I can understand how tired you feel about all the treatment. It is a long, tiring and worrying journey. Concentrate on the fact that you have got through it all and be proud of yourself.
I think you are right to reduce your working days to two days a week. You have been through a lot and it was the second time for you, so you do need to be kind and gentle to yourself and give your body time to recover. Your oncologist is right. You need to avoid stress and teaching is a demanding profession. When you get into class and are faced with a class full of students, you have to do your work and there is no rest.
You will get back to normal but it will take time. Do not be impatient.
Love.
Sylvia xxxx
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Hello CocoonCat,
Thank you for your post. You will find that as time goes on you will think less and less about breast cancer. It is normal to have the word cancer going through your head in the initial stages, but it does get better.
When are you starting the Taxol and carboplatin chemotherapy regime? I do hope all will go well for you.
I am surprised that you have not been told what kind of breast cancer you have. As I have said, IDC is the most common but there are others that are not so common.
I do hope you are taking vitamin D supplements now, as it is very important to keep these levels up.
There are many risk factors for breast cancer, but this does not mean that one of them was the cause. I suppose what counts is how many risk factors you tick that you have or have had. Oral contraceptives are often mentioned as a risk factor. As you say, we cannot rewrite what has happened in our lives that may have made us vulnerable to breast cancer. All we can do is look forward and try to keep our bodies healthy through good nutrition, being physically and mentally active, and avoiding negative stress.
You mentioned yoghurt. You can get probiotics in yoghurts other than cows' milk. I have organic plain soy yoghurt with live culture every day, and I have been taking it for years.
That is all for now.
Love.
Sylvia xxxx
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Hi Cocooncat - I agree with Sylvia, i cannot stress the importance of Vitamin D, from some of the research I have been doing the last year i feel that BC is connected with alot of deficiencies and strongest culprit is lack of Vitamin D. If you have trouble swallowing big pills i i recommend the the tiny gel balls by Pharma Nord, super easy to swallow. My mother uses solgar which is better in quality i believe but the pill is too big. - keep those levels up ! x
Hi Sylvia - Thank you for you kind wishes, you are always on my mind. When my mother started experiencing her water retention in her upper arm i immediately remembered your conversation about Lymphodema, I too felt she might be experiencing Lymphodema so I have scheduled her to see a specialist next week. I am so glad to hear that the Lymphodema in your arm has settled and you are getting back to normal. How often do you have to wear your compression gloves? mum wears them sometimes the day before taxol to help the nurses find a vein - she doesn't have a port, so finding a vein for her taxol has been a major struggle sometimes a nurse takes up to an hour its agonising for her and to watch someone poking you, her poor arm is literally blue. However the last few weeks have been better as she has one fantastic nurse who gets it in one go.
Tomorrow is taxol number 8 ! 2 more left and she will be done !
Has anyone heard of onion juice being phenomenal for hair growth? I went to see mums homeopath and he said onion juice rub is the best.. for lashes and brows we use castor + vitamin e oil i make at home, i think its been helping because she's still got her brows and lashes not gone completely like her hair !
xx
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Hello Sylvia and all here,
I am back from trip, had a great time, saw a lot of things. I sent the pic of tulips from Amsterdam, and thought I would send more but things became so busy, and you all probably know how it is. I will post more pics, I was a little disappointed by the small amount of good pics I did take. Seems we were always moving a bit too fast to focus on picture-taking!
My big worry was keeping up with all the walking, and that all went great which made me happy. We walked miles every day, some days 7 to 8 miles, and usually at least 3 or 4. This was not fast-walking, but more a good pace of strolling, and when on tours we were starting and stopping. I only iced my knee one night, which I took as a win!
I have read quite a bit of the posts I had missed, and see that the thread has been quite active. Sylvia, I was glad to read that your rash is gone and your lymphedema is well under control.
Hanieh, I see you have finished with treatment and you are understandably tired out. It will take a little while to get your strength back, but you will. You look very good, and I am always struck by what a happy, handsome couple you and your husband are.
Sarah, it's good to see you back, and I can see how you are so busy with everything going on in your life. Your mother is going through a lot too, with the treatment's side effects as well as your grandfather's death. I also had my Taxotere regimen cut a bit because of side effects, it is a powerful drug. Take care of yourself, too. Trying to take care of everyone else is very stressful.
Pam, I'm so glad for the good news report about your scar tissue, what a relief! You have a wonderful trip to look forward to, and the perfect time of year for to take it.
Cocooncat, glad to see your posts, and I see you are a couple months out from starting this unwelcome journey with TNBC. You are in a good place here, we have all been there too and support you!
Nancy, I hope you can get the scans you want, if you have only one chance to get them it may be better to take the risk and do it. I'm surprised it's so difficult to get a second opinion, if you have all test results in hand it shouldn't be hard, but I know insurance protocol is very different wherever you go. Here we are pushed to have our annual mammograms, and in my case since mammogram did not pick up my intial tumor I am also elegible for an MRI of breasts annually and I had one in April. I noticed the initial cost of that MRI was about $2000, but Medicare paid since I was eligible. My doc also ordered a brain MRI when chemo ended, apparently that is a recurrence risk with TNBC patients. I have not had a brain scan since then. I am sorry you are dealing with all this, it is so difficult to have the problem of the illness and then have to wade through red tape.
Sylvia, I will be back later with more about trip, good to be with all of you!
Love, Mary
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Hello Sarah,
Thank you for your post. I was so glad to read that you have arranged for your mother to see a specialist about her upper arm. A lymphoedema specialist will examine the arm and do some measuring and will come up with a diagnosis. Please remember there is a difference between swelling caused by water retention, oedema, and swelling caused by a damaged and impaired lymph system, which makes it difficult for the lymph to move smoothly through the lymph system. Ordinary oedema can be treated with diuretics, but these are of no use and should not be used for lymphoedema. You will need to have your mother do special exercises, to do them gently and slowly. Lymphoedema specialists will say you need to wear compression sleeves, to wear them all the time, but never at night, and to wear them especially when exercising. The specialist will tell you what class of compression sleeve you need depending on her measurements etc.
I was at the hospital on Tuesday so all this information is once more fresh in my mind. My lymphoedema has improved and my next appointment will be in six months time.
Because you are in London, I am wondering whether your mother is going to the hospital that used to be called The London Homoeopathic Hospital. Orthodox medicine is against homoeopathic treatment and would like to see them closed down. The one I went to was in Bristol, but I do not know if it is still functioning. The only other one is in Glasgow.
I do not have compression gloves but a compression sleeve and it is important to be measured by a lymphoedema specialist to make sure you get the right fit.
I was interested that you mentioned compression gloves that your mother wears the day before Taxol to help the nurses find a vein. I was not aware of this. I do know that as chemotherapy proceeds it can become difficult to find a vein if you are having your injections through a cannula. I did it this way and all was fine, but I would have thought your mother would have been advised to have a port or at least a pic line.
You might like to read THE book on lymphoedema. It is entitled Let's Talk Lymphoedema – The Essential Guide to Everything You Need to Know by Professor Peter Mortimer and Gemma Levine. I have found it most useful and mentioned it to my specialist nurse this week at my appointment. She told me she had read it as well and that they regarded Professor Mortimer as their Guru. He works at St. Georges Hospital in London.
Since your mother is going through chemotherapy and has had surgery, you might want to read chapter 4 – What causes lymphoedema? There are various causes, genes, immobility, old age, obesity, accidental trauma or surgery, cancer treatment, infection, filariasis, deep vein thrombosis, varicose veins.
Not many people know what lymphoedema is, but those that do often believe that cancer is the main cause, but it is the treatment of cancer rather than the disease itself that causes problems. Radiotherapy and some chemotherapies can cause lymphoedema, and, of course, surgery causes it.
According to the book, "it appears likely that taxanes (Taxol or Taxotere), a widely used chemotherapy agent, increase the lymph load by making blood vessels in the arm release more fluid. This can overwhelm a lymph system, already weakened by lymph gland removal". With surgery and radiotherapy also playing their part in damaging the lymph system, I would think that lymphoedema is quite common.
I do hope your mother has a good appointment with the specialist, because, according to this book, "with the advent of minimalist surgery, the problem of breast lymphoedema has emerged, although it has received much less attention". I was told that lymphoedema in the breast can be much worse than in the arm.
I do hope all this helps you and your mum to get the best out of your appointment.
Tell your mother to hang in there. She has nearly finished her chemotherapy journey.
I must admit I have not heard of onion juice for hair growth. Let us know if it works on your mum. Throughout my treatment, after losing my hair, I always rubbed pure avocado oil into my bald head to keep it well moisturised. Avocado oil is the only oil that will mix with water. I have used it off and on for many years to wash my face in very often, almost daily. Nowadays I also use coconut oil as a moisturiser.
As for lashes and eyebrows, I just left them alone. I had a wig with a good fringe that covered them. They do come back, but they are not as strong as they were. I have always had a fringe so it does not bother me much.
Let us know if they continue to work. My own experience with eyebrows and lashes was that they did not disappear completely.
For hair, your mum might like to try the Dr Organics Hemp shampoo and conditioner, especially the rescue one.
That is about all for now. Keep with us and ask as many questions as you like.
Love.
Sylvia xxxx
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Hello Mary and welcome back to the thread. I have missed you. I shall write more later.
Love.
Sylvia xxxx
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Hello CocoonCat,
Thank you for your post. I am out of time for the moment but I shall write later.
Love.
Sylvia xxxx
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one of the castle ruins of the Rhine Gorge Germany, with terraced vineyards overlooking an old town
Happy travelers at Rhine Falls in Switzerland
One of many frescoed very old buildings in Stein-am-Rhein near the Falls
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And more tulips in Amsterdam. Fact: a few days after we were there, tulip season show ends. Every blossom is taken out, beds are dug up, and plans for new beds begin, with planting beginning for next year's all new displays starting in April.
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Hello CocoonCat,
Thank you for your post. It was nice of you to be thinking of me as you drank your Chinese green tea.
I was glad to know that you had got through your first round of paclitaxel (Taxol) yesterday. I do remember having a flushed face when I had my first dose of chemotherapy, which was EC, epirubicin and cyclophosphamide. I had this flushing on and off through chemotherapy. I do not know why it happens. I do hope you manage to continue to feel well, but remember that the doses do build up, as might the side effects.
It was good to know that you managed some exercise on your bike as well.
I do understand about how we can forget some of the information we are given when first diagnosed. That is why it is always prudent to have someone with you during your appointments and to have paper and pen to take notes during the appointment and also in preparation for appointments. It is good that you have your partner with you and that he is good at retaining information.
My own view is that you need a basic amount of information when you start but you do not want to get overburdened with it all. On diagnosis you need to know what kind of cancer you have and the receptor status. Patients on the thread sometimes emphasise the receptor status but do not mention the kind of cancer.
Things may have changed since I went through treatment in 2005/6, but at that time the stage was dependent on the size of the tumour and if the tumour was large, 6+ cms, then chemotherapy was adjuvant, that is you had it before surgery in order to shrink the tumour and make surgery easier. I had a large tumour and that is why I had chemotherapy first. Every three weeks I went for chemotherapy and before starting it I had an appointment with the oncologist or registrar and the tumour would be measured.
No one mentioned lymph nodes to me and I was not told about them until after surgery, even though I seem to remember the cancer care nurse talking about some patients having a blue dye injected to show up affected nodes. I was not offered that.
Try not to worry about the stage and whether it is 2B or 3A. The chemotherapy should take care of it all. If there is any tumour left, surgery will take care of it. Just focus on the fact that an ultrasound scan shows that the chemotherapy is doing its work and that things are shrinking.
I do hope you will be able to find an alternative yoghurt to cows' milk. You need to buy plain, unsweetened live culture soy yoghurt. As I said before, I buy Sojade organic soy yoghurt, plain, unsweetened and with live culture. You can also get Provamel organic soy yoghurt, plain, unsweetened, live culture. I have found these are not easy to find in my supermarkets but I buy them in a natural food store. I am not sure which country you are in, but if you are in the UK you can find Provamel in Holland and Barratt. As for coconut yoghurt, it seems to be a big thing over here, but I do not know whether it will last.
It seems as though coconut in all shapes and forms took off in a big way a few years ago, and everyone seemed to go coconut mad. The fat in coconut is saturated and now some 'experts' are telling us that saturated fat is bad for us and other 'experts' are telling us that it is not bad for us and that we need saturated fat in order to absorb the fat-soluble vitamins, such as vitamin A, vitamin D and vitamin E. We each have to decide what we think.
Diets seem to have become quite controversial. Some say low fat is best, others say it is bad, others say high carbs are good, others say they are bad. I tend to believe moderation in all things. As for coconut, I do agree that pure coconut yoghurt tends to be expensive. It is about £3 a pot here and the pot is not a normal size yoghurt pot. Provamel does do a large pot of organic sy yoghurt with coconut that is very tasty.
Remember not to buy fruit flavoured yoghurt as it has sugar in it.
As for carbohydrates, I do buy vegetables with carbohydrates in them, such as carrots, but I do emphasise green vegetables, such as all of those in the cabbage family – broccoli, cabbage, greens, Brussels sprouts etc.
Remember that for a healthy gut you need not only the probiotics from yoghurt, or fermented things such as sauerkraut, but you also need prebiotics such as onions, garlic, apples, asparagus, artichokes etc.
That is about all for today. Good luck through your chemotherapy journey and remember to keep well hydrated, rest, avoid stress and keep looking forward. Remember, also, that your immune system will be weakened and make you susceptible to infection so avoid crowded places and people who may have something infectious and pass it on to you.
Love.
Sylvia xxxx
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Hello Mary,
Welcome back to the thread and thank you for all those most interesting photographs.
It sounds as though you had a great time and sure did a lot of walking.
I was glad to know that you have managed to catch up with the posts. It is strange that you said the thread has been quite active, because I thought it had been very quiet! It seems to me that people seem to be forever starting new threads and asking questions when the answers are already on this thread or the TNs and the Moderators' ones. Sometimes they are asking questions that can only be answered by their medical teams.
It is true the rash has gone and the lymphoedema is doing well. There has been a significant improvement and despite what I am told I do hope it will disappear like it did before back in 2006, without much treatment. I am wearing the compression sleeve, class 2, but I do find it gets on my nerves. I am back to doing the gardening but making sure I do not overdo things. I am told not to carry heavy bags, try to put my shoulder bag on the other shoulder (which I find impossible), rest my arm on pillows when sitting and doing my exercises and keeping my arm well hydrated. I am using s magnesium body butter and a Dead Sea extra rich moisturiser. The mole scar has healed quite well but inside the arm strength and muscle will not be back to normal for some time. I am quite sure the mole was due to radiotherapy treatment. As we have said before, all aspects of our breast cancer treatment are harmful.
It was good to have Sarah back on the thread and to welcome CocoonCat.
There is still no news of Marias and with all that was happening to her I feel real concern. There is still no news from Kathy, so I do wonder how her sister is doing. We have not heard from Val in a while, either, but Pam, adagio, Nancy, Hanieh and Kath continue to keep in touch faithfully. Pam was going off to Scotland and Ireland, so she may have gone, and adagio may be on holiday.
Thinking of you.
Love.
Sylvia xxxx
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Hi Sylvia,
Thank you for all the information, I hope mums appointment goes well and its only a case of water retention. I am interested in getting the book to read up on Lymphodema, when your caring for someone who's going through BC and these treatments its really important to have some insight on all possible conditions that can come from BC treatments.
Im so glad that your lymphomdema has improved. Thats one less thing to worry about !
In regards to where mum goes for her "complimentary" treatment ( they make it sound like its a spa ha ) you are correct, she sees her homeopath doctor at the london homeopathic hospital which is now called royal london hospital of integrated medicine. It has been an absolute nightmare to get an appointment with ANY of the NHS homeopath doctors, her first appointment was in april which was booked in december!!! It has been a matter of chasing if not stalking these homeopath doctors to get an appointment, any numbers provided by the internet, doctors website, referral by the onco... etc goes to no avail, It was just impossible to get in touch with them.
Mum wanted to start Iscador during her chemo, by the time we got the appointment in April mum was half way through the chemo and to our dismay the NHS stopped funding iscador treatment as of april 2018, so in order for us to have it prescribed we have to buy it at £550 for 3 months supply. I felt so bad for mum because i knew how much she wanted to integrate this with her treatment and to continue it after. The homeopath doc said that the orthodox docs have been making it difficult for them to manoeuvre hence why the difficulties getting appointments and so. I suppose these pharmaceutical companies play a crucial role in all of this, My mothers orthodox onco does not really care for iscador but was happy for mum to try it "if it made her feel better" little patronising but as long as got the ok i don't care !
As regards to her hair, she's fully rocking bald now, whatever last few strands she had came off today, so she has static grey little spikes of hair. I will look into the organic hemp shampoo. She was given these homeopath pills to take after chemo is done. lets see if they work!
Thank you always for putting so much thought and effort into all the posts you write !
Kindest,
Sarah xxx
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HI, Sylvia
I suppose the thread seems active when one is reading 2 weeks worth at one time, I did not check all the dates.
I was happy with my walking on the trip, but since I have been home I have been working outside, and dealing with problems like clogged drains and animal incursions. I have been stooping and bending and lifting and I am now quite sore. My knee does not feel so well when it does all this kind of thing. It became very hot here while I was gone, it has cooled down a bit now. The heat and rain really made things grow, including the weeds, I have been playing catch-up since back.
A nice thing about being around people one doesn't know for 2 weeks, for the most part I did not give cancer a thought. There were possibly other people on our ship with the same condition, but we didn't speak of it, it was nice to just feel like it had never happened.
We spent a few days in Amsterdam, a week in Germany and 4 days in Switzerland. Our favorite places were the Tulip Gardens of Holland, going through Germany's Rhine Gorge with its' many castles, both ruined and not, and Lucerne, Switzerland. When we were in Lucerne it was our only sunny day in Switzerland, that may have swayed our opinion. We took a ferry boat ride in the late afternoon and admired all the mountain views surrounding Lake Lucerne. On another day there it was cloudy but we took cable cars up Mt. Stanserhorn and then had to walk the last bit to the peak. There we should have had a sweeping view of many of the Alps' peaks but all we could see was the path before our feet since the clouds were so thick. We came back down with dripping hair and damp clothes. Nevertheless, it was an experience we enjoyed. And the rest of the trip was perfect weather, so can't complain too much.
I have also noticed all the new threads starting, I think people are just so worried and want answers to their questions immediately, and probably have not read all the other threads.
I often wonder about my right arm, I tore one of the rotators during chemo, it has an 80% tear, and I had much shoulder pain after that. I still have the shoulder pain with exertion, and it sounds also like what you describe as your lymphedema effects. I wonder if I have a combination of the two, all my discomfort was laid at the feet of the shoulder injury, but when I pull weeds, and carry too much and so on, I do have pain through my shoulder and upper arm and a feeling of fullness. When I look at my arm it looks very normal. One of the reasons I have not had the rotator cuff surgery is because I didn't want to tempt fate and make things worse. I have rested my arms on pillows when sitting and when driving ever since I had the shoulder injury; to this day I have a pillow in both my car and my truck for this purpose. The compression sleeve you have does sound very constrictive, like the tight support hose I had to wear for a while.
I also wonder about Marias, I wish we could contact her. She was having one thing after another to deal with, I hope she came through it all and is resting now and regaining strength.
I have to leave for a bit now,
Talk to you soon, love, Mary
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Hello Sarah and Mary,
Thank you for your posts. I shall answer later on today. I am going into the grounds here to do some well needed watering on newly planted annuals. With all the rain we have had it now refuses to rain when I need it.
Yesterday I reached 12 years and 11 months since my diagnosis. I have just one more month to reach 13 years.
I do wish we could find a way to contact Marias. it would be nice too if Lou could pop in and say hello.
I have also been wondering what has happened to Kathy who was posting on behalf of her sister.
I shall talk later.
Wishing every one a good week.
Love.
Sylvia xxxx
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Hello Sarah and Mary,
It is now 7 pm and I have been on the go all day since 7 am. I shall make it a priority to answer your posts tomorrow, when I hope I shall gave a more leisurely day.
Just remember, Sarah, that you and your mum should do what you think is best for you. I cannot see why there should be objections to Iscador when it is used for cancer treatment in Germany and that country has a much better record for treating cancer than the UK. Remember to have Iscador orally and not through injections, because of possible infection during chemotherapy. I took oral Iscador from diagnosis and for five years. I had it prescribed on the NHS by a consultant who was then working at the Homeopathic NHS hospital in Bristol. I was referred to her by my NHS breast cancer consultant and they worked together on my treatment in so much as all my appointments at Bristol had written reports sent back to her. I cannot believe the price being quoted for Iscador.
I shall talk more later.
Best wishes
Sylvia xxxx
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Hi Sylvia,
Yes we went for the oral drops !
I don't think there was any objection for mum to use mistletoe, it was more of a "us orthodox docs know better and if you want to waste your time with herbs then do as you please" ( que the eye roll ) mind you the homeopath onco is one of the leading oncos in the UK who specialises in mistletoe treatment. She's been fighting to get it back on the NHS. Its such a shame that they no longer cover costs and have put these obscene prices.
mum and i have researched and read so many benefits to mistletoe and for someone like my mum who really integrates homeopath meds in her daily life in general, i think it was important for her to take it alongside her orthodox treatment. you are right, you should always do what you feel is right for you.
I hope you have been resting ! looks like you have had a super busy daySarah xx
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Maryna - so glad to hear that you had a wonderful vacation in Europe - it sounds fabulous, and I am glad that your body co-operated especially with the walking. I totally understand what you mean about the volume of work around the home. I have been working non stop in my garden reconfiguring shrubs and patio layout - I work all day, and at the end of the day, I do not seem to be any further ahead. It is arduous work, but I am grateful that I can do it at all. However, I am slowly learning my limits. Since my tumour was very close to the chest wall - any kind of pulling, stretching or lifting causes me pain in my rib cage area - at first I simply battled through it - but now I am attempting to take things more slowly. It is challenging because in my mind I know exactly what I want to do and I want it done fast.
The weeds are never ending. In the fall I am going to have a landscaping company put down 3 inches of mulch for me - it apparently can keep weed free for about 2 years. Do you mulch in between your shrubs and flowers? I never have done before, but I will give it a try. I have seen it in the neighbourhood and it is quite attractive.
I personally would shy away from the shoulder surgery too, but having said that I do know a friend who had a torn rotator cuff and she had the surgery - the recovery was long and slow, but she seems to be doing well now.
Do you have your next travel plans in motion yet - or will you stay home for a while?
We are having a lot of house visitors this year, so we will be home all summer, but hope to go to Croatia in the fall, all being well.
Lovely to have you back and I always enjoy reading your posts.
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Hello Mary,
I have finally sat down at my desk to answer outstanding posts. It looks as though you have been very busy in your garden. There is always a lot to do when you have been absent for a while.
I can understand what you mean about not thinking about cancer. We all have to try to switch off most of the time when we have finished treatment. I think a lot of us manage to do this and then the anxiety comes flooding back when it is time for check ups. I know this happened with me, but I tried to take the advice of a nurse friend of mine and try to focus on the fact that the check ups were there to help and not harm. I still found my breathing got back to normal after I was told that all was fine.
It sounds as though you had an interesting and enjoyable holiday. You must find Europe very 'olde worlde' compared to the US. I think England is very olde worlde and yet I think the European countries seem much older. I suppose the whole of the UK is olde worlde but I am more familiar with England than Scotland, Wales and Northern Ireland. I like the countryside in the UK but think we have too much old stuff in the cities and towns. Where are you planning to go next?
As for the new threads, it must be that new people just do not look in detail at the forum. Many of the questions should be put to their medical teams and not to members here, who do not have medical expertise. We can relate our own experiences with our cancer treatment and say how we coped, but we are not supposed to advise. We can only say what we would do. I think with our thread we need to add to the title and say "All TNBC patients in the UK and anywhere else in the world". In fact, from the very beginning, patients have come from all around the world and I think that fact has made it a better thread. I have learned such a lot from all that patients around the world have had to say.
It is difficult to know what to say about lymphoedema but I feel there are many patients, especially, but not exclusively, cancer patients who are walking around undiagnosed and unaware of how common it is. I think that unless you mention swelling and ask about it, nothing is done. If I look at my right arm it looks normal but there is a slight difference when you measure it. Mine is most noticeable in the middle, the wrist part and the upper part are identical on both arms. Even so, I have been prescribed Class 2 compression sleeves. I think it is probably much worse if you have it in the upper arm and chest area and have to wear compression garments over that part of the body. This is one of the down sides, apparently, of having a lumpectomy. You have less drastic surgery but lymphoedema seems to be more likely in the upper part of your body. At least that is my understanding of what I read in the book on lymphoedema.
It is good that you are resting your arm on pillows when sitting. I have been told to do that as well and also in the car. Any position that has your arm hanging down makes for swelling and the swelling subsides at night when you are lying down, and your arm slightly raised on a pillow. I remember straight after surgery that the nurse told me, in the hospital bed, to keep my right arm raised on my pillows.
I do wish we knew what is going on with Marias back there in Colombia. I do hope she is swimming in the pool in her apartment complex and doing her Nordic walking, and that one day soon she will pop in to say hello.
That is about all for now. I am busy catching up.
Love.
Sylvia xxxx
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Hello Sarah,
I do hope you get the book on lymphoedema, as I think it is something all cancer patients and indeed all patients who have had surgery should read. If your lymph system gets damaged in any way, the lymph cannot flow smoothly and you will get swelling. The lymph system is the cleansing and drainage system of the body, and gets rid of all the mess.
I was interested in what you had to say about the hospital your mum goes to to see her homoeopath and to learn that the London Homoeopathic Hospital is now called the Royal London Hospital of Integrated Medicine. Where exactly is this in London? I do hope that the homoeopathic doctors under the NHS do not get pushed out. It sounds ominous that it is very difficult to get an appointment with any of the NHS homoeopathic doctors. It seems that it is difficult to get any kind of appointments under the NHS, whatever they practise. It took me three months to get an appointment with the lymphoedema department, and that is orthodox.
As I think I said, I am not sure what has happened to either the Bristol Homoeopathic Hospital or the Glasgow Homoeopathic Hospital. I know that my consultant there, Dr Elizabeth Thompson, is no longer there and I do not know if the hospital still functions. I think Dr Thompson now works privately. She considered my case with her a success and asked permission to use it anonymously in her lectures to students, which, of course, I gave. She always said I needed to have the orthodox treatment and that she would treat me all through my journey with homoeopathic medicine, which she did at each stage. The mistletoe I had throughout and for five years.
I cannot see the harm in having integrated treatment. It makes sense to me. There is nothing more toxic and dangerous than the orthodox treatment we get and Big Pharma makes a lot of money out of it all. Cancer drugs are getting more and more expensive.
I agree with you about the patronising attitude of your mum's oncologist but am not surprised.
Do you get your prescription for Iscador (mistletoe) through the hospital? I must say £550 for three months supply seems exorbitant. I was really lucky to have it prescribed through the NHS, and it was sent to me at home from Bristol. I did have quite a few appointments there, but the medication was always sent home to me. Everything was reported back to my breast cancer surgeon, so I suppose my oncologist knew about it but I never mentioned it to her.
I would be interested to know whether the homoeopathic pills have any effect on helping with hair growth. The hemp shampoo might be helpful. It is called Dr Organic Bioactive hair care – Hair Rescue and Restore – Organic Hemp Oil with 'Baicapil' Hops and Hibiscus – Rescue Shampoo – gentle cleansing action for healthy hair growth. There is also a matching Organic Hemp Oil Rescue Conditioner. You can get it at Holland and Barratt or on line.
During my treatment, when I was bald I regularly washed my head in avocado oil, the pure kind that you use for cooking or salads. I still use it on my face.
That is about all for today. Keep looking forward and do what you think is best for your mum.
Love.
Sylvia xxxx
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Hello CocoonCat,
Thank you for your post. I am only too pleased to help you in any way that I can and I feel that it is so important for you to be positive about what is happening to you and to keep looking forward. You can get through all this. I can fully understand how you will have highs and lows as you got though this.
Please stop looking at the internet and at anything that is preaching doom and gloom. This will serve no purpose except to bring you down and make you feel low.
My information about neoadjuvant chemotherapy is that it is given when the cancer tumour is large, 6+ cms and that it is done to shrink the tumour as much as possible, to make surgery easier. The criteria for neoadjuvant chemotherapy may have changed since my diagnosis and may now be used for other situations. Sometimes it gets a bit confusing. In my case the lymph nodes were not mentioned until after surgery when I was told one lymph node (the sentinel node) was affected and that six others had been removed to make sure and play safe. On diagnosis I had had a CAT scan and a bone nuclide scan to see what was going on and no one mentioned lymph nodes. I was just told all was just fine.
It is true that chemotherapy is a systemic treatment, that is that it goes throughout your body, so will hopefully work throughout, although I have read that chemotherapy only works for 3% of people! I find that hard to believe because most of us survive. If this is the case, why do we not have just surgery? Not everyone has chemotherapy. I think what is needed is frank discussions with the oncologist. We might even be cynical and say oncologists will want chemotherapy because that is their job, as surgery is the job of breast cancer consultants! All you can do is make up your own mind.
I have a friend here who had breast cancer well over thirty years ago, had a lumpectomy and some kind of radiotherapy. She probably had what we now call triple negative breast cancer. I have several other friends who had hormonal breast cancer, had lumpectomies and radiotherapy and are all alive and well without chemotherapy. Their cancer journey was a lot shorter than mine and back in 2005 I could not find anyone in my circles with non-hormonal breast cancer. I was told the prognosis was not good, because tamoxifen was no good for me. I ignored it all, delayed a lot and then had my treatment. The best thing I did straight after diagnosis and had seen the breast cancer consultant for a fine needle biopsy was to go out and by a book entitled The Cancer Directory by Dr Rosie Daniels. I read it from cover to cover, made my notes on questions to ask and sent it off to my breast cancer consultant, who answered all my questions at the next appointment. That book was brand new in 2005 and just went through every aspect of breast cancer and to decide whether to have treatment or not. Of all the books on breast cancer that I have read since, and there have been many, I think that was the one that helped me the most.
I was amazed at how quickly you went from an appointment with your oncologist to having chemotherapy. You barely had time to think. Did you meet your oncologist first? I ask that because the first person I met was the breast cancer consultant surgeon and I had a mammogram and an ultrasound with a biopsy. I had the result the same day.
I am not surprised that your mind is still catching up. You need time to think but first of all concentrate on getting through the chemotherapy. They will give you time to recover from this before arranging surgery.
When will you get the results of the genetic status, BRCA1 BRCA2? You can think about your options when you know this.
I was not given an option about lumpectomy or mastectomy, but I would still have opted for a mastectomy to get rid of the cancerous breast. One of my friends had two lumpectomies, one after the other, to get clear margins. She told me that if the second one had not shown clear margins then they would have done a mastectomy.
The lymph nodes are very important and they are the clearing depots of all the debris going through our lymph system and it is very unfortunate when we have to have them removed because of cancer cells. We end up with a damaged, impaired lymph system and are vulnerable to lymphoedema, which is a chronic condition. I feel strongly that as few lymph nodes as possible should be removed, apart from those affected.
I was interested to know that you are actually in Australia. You are certainly not an interloper on this thread and it has been international ever since I began it in September 2010, well after my own journey. I discovered bc.org when I was looking for information about the connection between developing breast cancer and an over active parathyroid gland.
We have had people from all over the world since the thread began – America, Canada, South America, France, Germany, Ireland, Philippines, Iran, Singapore, South Africa, and even the UK! At the moment we have Kath from Australia and she has finished her treatment. Like all of us, she still worries about the 'what ifs' but somehow we all get through our days. I do hope she will pop in to give a special hello to you.
I was interested to know that there is an increase in the interest in vegan diets in Australia and it seems to be the same in the UK. Are you thinking of following a vegan diet? I am not a vegan, but I have thought about it and I do not eat much in the way of animal products. I do not eat meat but I do eat fish and that is wild salmon and some haddock. I also eat cold water whole prawns. I think these foods are important for omega-3 and iodine. We have discussed iodine deficiency in detail on here and how it is deficient in our western diet. I do use Nori flakes and kelp powder to get iodine. I eat lots of fruit and veg, organic when I can. I also have Alpro almond drink enriched with calcium and unsweetened. Organic soy yoghurt as I have already mentioned is part of my daily nutrition, with a mixture of raw nuts and seeds, pulses and beans. I eat a little bread, Vogel soy and linseed with some whole wheat. I believe in a Mediterranean/Rainbow diet. There are all sorts of diets around these days, including the Paleo and the Ketogenic diets. I avoid dairy products like the plague, along with sugar and alcohol. For nearly thirteen years I have been drinking green tea and eating bitter apricot kernels. These are very controversial but I am an independent thinker.
I can understand that you have become a bit of a homebody since diagnosis, but you will feel more like going out as time goes on, especially when you have finished chemotherapy.
I forgot to say that I think you are having a very good mixture of vegetables in spite of your food intolerances.
I had to laugh at your description of mushrooms as I absolutely love them. I eat a mixture of them and try to eat Shitake Chinese mushrooms when I can. They are supposed to be very healthy.
I can understand how you feel about surgery, because I had a great fear of being in hospital. I was fine with the chemotherapy and radiotherapy because I cam home afterwards, but I was terrified of being in hospital and in 2006 five days was what I had after a mastectomy. I got through it when a friend told me to stop worrying because I would not know anything about it and it would all be over when I woke up. Tell yourself you are going to be alright.
Thinking of you and sending you love and best wishes.
Sylvia xxxx
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Hello everyone,
I do hope you are all having a good and happy week and that those of you who post and hopefully some new posters, will pop in to say hello and to help and support those who need it.
Sending best wishes to
Mary and Pam in the US
adagio and Nancy in Canada
Hanieh in Iran
Sarah and Kathy in the UK
Kath and CocoonCat in Australia
Lou in Singapore
Best wishes to Val and Rhonda in the US. We hope all is well with you.
Marias in Colombia, South America
and any others that I may have forgotten, to the two men that once posted with reference to their wives, BreastCancerhusband Tom, and Chatterbox, Michael. Tom in the UK and Michael in Northern Ireland. We miss you and your words of wisdom.
Best wishes
Sylvia xxxx
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hi everyone
It's start to get cold here which I hate as the aches and pains seem to get worse. I've been very busy with my nurse practitioner studies and seem to be doing well. It's probably the most organised I've been because I keep think I need to get this done just in case! Hate that feeling. I still have lots of aches and pains which scare me daily but I'm tryreally hard not to go to that dark place
Sylvia we have a new flu vaccine for over 65 in Aus which seems to be less stressful for people. It is only the trivalent strain but 4 times as strong. We have had no problems with it yet which is a good sign.
I'm off to Adelaide on 4 th June for the national immunisation conference. I'll keep u posted about it. Cocoon cat where are u from In Oz? Apparently Peter Mac in Melbourne are going some groundbreaking stuff with triple negs
Hope everyone is well.
Lots of love
Kath
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Hello Kath,
It was nice to hear from you.
I was pleased to know that you are keeping busy with your Nurse Practitioner studies and are doing well. It is good that you are being very organised. It does make life easier.
Just try to relax and not worry too much about aches and pains. Get on with your life and always remain optimistic. Keep away from those dark places as they serve no purpose.
I was very interested to know that you have a new flu vaccine for the over sixty-fives in Australia. Needless to say that I shall not be having any flu vaccines of any kind for the remainder of my life!!!
Your conference in Adelaide on June 4th for the National Immunisation Conference sounds very interesting and I shall look forward to hearing all about it.
Thank you for saying hello to CocoonCat. She is going through a difficult time and she does need our support.
I noticed that you mentioned Peter Mac in Melbourne and that groundbreaking work is being done with triple negative. Are you able to expand on this, as I have not heard of Peter Mac. I do hope the groundbreaking work is not yet more toxic drugs. I still believe the work should emphasise possible causes or risk factors for all breast cancer and how to try to lead a healthy lifestyle to prevent this disease and other chronic diseases.
Last night I watched a very interesting programme about how much medication is being given to young children, especially Calpol and antidepressants. The doctor was trying to find ways to get these children off these drugs. They are being given out in massive amounts. There was a specialist doctor trying out Mindfulness on these children, many of whom are suffering from hyperactivity and attention deficit syndrome. It was on BBC1 at 9 pm our time and was entitled The Doctor who gave up drugs and is one of two – Dr Chris van Tulleken returns to his mission to wean the British population off its reliance on prescription medications. This time around he is concentrating his efforts on children, asking why they are taking three times more the amount of medication than they were forty years ago. It might be of interest to you.
The thread is very quiet, but I suppose it is holiday time in the northern hemisphere. I do not much like the silly season in Exmouth!!!
We do have patients such as Nancy, Hanieh and CocoonCat who are still going through treatment and need our support.
Reading through other threads here, I get the impression that breast cancer diagnosis is going up and up.
Thinking of you.
Love.
Sylvia xxxx
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Hi, Adagio
I don't want to mislead you, the work you are doing with shrubs and patio layout is way above what I'm doing. I have just been trying to tame the weeds in my asparagus, and in my unimpressive flower beds. I have not mulched any beds, my theory is to plant things thickly so nothing else can grow, and it does not always work. I have probably lost as many plants as I've had success with.. I think mulching shrubs is a very good idea, since there is so much space between them. The pain I have with all the stooping and bending work is largely because of the neuropathy in my legs and and over-all body and the doctor who did my nerve test warned me about it. He said my leg muscles would be weaker because of it, and if I got ill with a cold or flu, it would make me sicker than it used to do. The neuropathy is from the chemo, but hey, as my least favorite doc in the world told me, "you are here to complain about it!" And then there is the knee, which doesn't seem to mind walking with the help of a cortisone shot, but does not like squatting and kneeling.
I do almost feel guilty complaining at all, because I am still here. And as you said, I am grateful to be able to do anything at all. I feel for all the women, and some men, on this forum who are going through all the fears, physical misery and decisions that come with this diagnosis.
I feel I was a bit mislead about the shoulder issue I have with the rotator cuff. When it was first discovered I was told by docs that it would get better with PT, or I would get used to it etc. After months of PT, I was re-scanned and it had torn worse. So then I was given the go-ahead to have surgery, but by then I was still a mess after the chemo with its' aftereffects. So I have put it off, and now I don't really want to go through the surgery, it is a rigorous recovery process. If I didn't have these other physical problems I would be more apt to do it now.
I will be traveling here in the States in June and August, God willing, and in September my sis-in-law and I are doing a land and sea trip to Alaska, looking forward to that, we will be traveling through Vancouver, I think getting on the boat there.
I was very impressed with Croatia when I was there last year, it is a very energetic place and very beautiful. I say energetic because there is a lot of building going on there, I was told that, since their war of 20 years ago, they have recovered for the most part and people have discovered their beaches and many of them are small round pebbles instead of sand but very nice, they also have lovely white sand beaches and tall mountains. People are flocking there, and they say real estate is getting very expensive, it seemed that way in all the pretty places in Europe. Even the houseboats lining the canals of Amsterdam were crazily expensive.
I enjoy your posts as well, and am glad to hear from you, and hope you have a great summer. See you here later!
Love, Mary
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HI, Sylvia
As I told Adagio, I am not doing anything very grand, I have flowers that were supposed to come back that haven't, so have holes to fill. I have one bed almost 1/4 destroyed by a burrowing animal that burrowed under the foundation of my farmhouse, I have been working on ridding myself of it. I have drains outside that decided while I was gone to finally become completely clogged and back up into the garage, now I have large holes outside where we have dug things up, but I am waiting for the proper piece of equipment to arrive to fix the pipes. It was still very chilly here before I left, and became very hot while I was gone, and the weeds took off. I have been working on my asparagus bed a little every day, it is slowly getting better.
I lost another friend while I was gone, she lived in another state and died quite suddenly with complications of lung cancer. It was Stage IV, and was apparently misdiagnosed at first. I am 65 and have already lost so many old friends, it really makes one want to soak in every minute of life.
Interesting what you say about the "olde worlde" of Europe, there is much that is very old and I do very much enjoy seeing all the historical sites that I have read about, and so much also that is new to me. It also seemed to me that Germany is doing very well (at least, where we were), it seems to be very prosperous and as everywhere else we went, real estate is very high because of the demand for it. All the towns have their "old towne" and then the rest seems not only new, but very new and growing. We also learned that even in some of the old towns, what looks old is not really. Such as in Amsterdam, many of the old houses lining the canals were destroyed in WWII; and when rebuilding took place, many of these buildings were built to look old so as not to clash with their neighbors. It was all very interesting to me, I like the mix of old and new. It looked as if Switzerland is sticking with the old in their countryside, we learned that in many of the very small towns with the very old house/barn combos, they cannot make just any home improvement they like, it must meet requirements of the government. It looked to me as if that held true everywhere with the old farms.
There are a lot of new threads here that don't seem to go anywhere much. I read a bit on one of them called "Can you survive TNBC". There were many very good answers to the question, but I'm not sure the original poster ever came back. I noticed you posted there also, and we can only hope she found the answer to her questions somewhere and is moving on with the process. I also like the mix of people on this thread from all over the world.
I agree with you about lymphedema, there are probably many of us who have it to a small degree and don't know it. With me I don't know if it's pain from the shoulder, or possibly lymphedema or probably both if I use rt. arm too much. I hadn't heard about lumpectomy causing it more than mastectomy. I do know that after breast surgery my surgeon later drained fluid from a swelling at the site. She said that was good it was fluid, because it meant it wasn't lymphedema. Then the Lymphedema Therapist told me I didn't have it, so I moved on from that and blamed all on shoulder injury till you became aware of your case and thus made me more aware. I started using the pillow on my own, I was just having so much pain when my arm hung while driving. 3 years later I am still using pillows, and it still feels good whenever I am sitting at home or driving.
You paint a good picture of Marias life now, I hope she is living a good, healthy life, and that she will check in some time.
I will talk to you again soon, love,
Mary
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Hi, Kath
I haven't heard of Peter Mac either, I will try to look him up and see what's going on there.
If you have a new flu vaccine, we will have it here next fall, we always get what you Aussies had in the previous season. There is also a new Shingles vaccine out that is supposed to be much better than the old one. You can fill us in after your conference, that would be great.
Sorry about your aches and pains, I feel your pain and share it. Not happy about it but the alternative is to lie on the couch and do nothing, so I guess I choose aches and pains! Ugh.
I will talk to you again soon, love
Mary
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Hello everybody,
I have been reading this site but could not bring myself to write and share my feelings as my English is not good.But after reading for many days I feel I know you all personally.
Myself I am 58 years old .I was diagnosed in June 2016 and am triple negative.I am writing all this with help from my daughter. I am happy that I could write today. All the best to you all lovely people who share their feelings.with each other.
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Hello Mary,
I was sorry to read about all that you are having to do in your garden. Do you have a ground hog? I remember what a menace they were in Canada.
I was sorry to read that another friend of yours had died while you were away. Cancer of all kinds is really taking its toll on so many people. I feel so angry about it and I feel strongly that the treatment is part of the problem and even if first of all you get NED your body has been badly compromised. I do not think more drugs is the answer. For me it is prevention. Our western lifestyle is no good for us. Immunotherapy seems to be just as lethal as chemotherapy.
Your impressions of the places you saw during your trip make interesting reading. I think that Germany has probably benefited the most from the EU and does in fact rule the roost. Perhaps this is their way of winning the two world wars they lost!
Did you go anywhere near Boppard on the Rhine? I had a very happy time there on a school trip in my last year before going to University.
I do wish people would stop creating all these new threads, which, as you say, go nowhere. I do think the forum as a whole needs tidying up. It is too sprawling and too complicated for new people to navigate. I look up the active topics, from time to time, and always glance at anything to do with TNBC and lymphoedema. With lymphoedema, I discover different threads under the forum Lymphoedema. I think it would be much better just to have all the posts under one thread, called Lymphoedema. I do worry, too, about possible misleading information, for example, on one of the lymphoedema threads, someone was posting about how they slept in their compression sleeve. I do wonder where that came from. At the hospital I have been told never to sleep with my compression sleeve on at night. I have had that information from my retired nurse friend and also from someone I know who has her own business as a private lymphoedema specialist and who has also done a lot of her training in Germany. I think when giving information posters should quote their source.
With reference to lymphoedema, and lumpectomies and mastectomies, I did read in the book entitled Let's Talk Lymphoedema, written by the number one specialist in this country, that with lumpectomies you can end up with lymphoedema in the upper part of the body and so it seems to me that this breast conserving surgery also has its downsides.
The information I posted about chemotherapy drugs and lymphoedema also came from the same book.
It is true that when your arm is hanging down it is a bad position for lymphoedema and your impaired lymph system. I was told to prop myself up when sitting and when in the car, with a cushion or pillow and to put my arm up on my pillow when sleeping (not always easy). I was told to do that straight after surgery and to do exercises.
Let us remain hopeful that our much loved Marias will pop in to say hellow in the near future.
That is all for now.
Love.
Sylvia xxxx
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Hello Jaga56,
Thank you for your post and on behalf of our very friendly group here I would like to say welcome.
I was pleased to know that you have been reading on the site and have now felt confident enough to post. Do not worry about your English. I am sure it is fine. What is your native language? We do have Marias from Colombia in South America but she has not posted lately and we hope she is alright. Her English was good but when we thought it would help we put it in English and Spanish.
It is so lovely of you to say that after reading for many days you now feel you know us all personally. I think we all feel the same about one another and we are not just names in print.
If you are able, it would be helpful if you could put your details under your post so that we can refer to it each time you post in. we generally put what kind of breast cancer we have, the most common is invasive ductal carcinoma (IDC) and then the tumour status. We now know that you are non-hormonal and are negative in oestrogen, progesterone and HER2. Can you tell us the size of the tumour, the stage and grade. Since you were diagnosed in June 2016, you will have finished your treatment. What kind of surgery did you have? What regimen of chemotherapy drugs did you have, if any and did you finish with radiotherapy? How did you feel during your breast cancer journey and how are you now after nearly two years out?
I was glad to know that you are getting help from your daughter with your writing. It is good to have that kind of support.
You have made us very happy and I am happy to see you write that you are happy that you could write today.
Please let us know if we can help you in any way. I suppose that you are now going through the usual post-standard treatment with regular check ups.
We are international on the thread so I know we would all be interested to know which country you are living in.
Have a good weekend.
Love.
Sylvia xxxx
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