Calling all triple negative breast cancer patients in the UK
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Hello Helen,
I was interested to hear that you're off to Melbourne to see if you could be eligible for a trial. It's a long journey, but if a trial is suitable for you the treatment would probably be given at your local cancer centre. Good luck.
I'm so pleased that your wound is finally healing, even if the vacuum dressing is making embarrassing noises. Hope everyone around you has a sense of humour.
Let us know how the Melbourne visit goes.
With my very best wishes,
Gill X
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Hello everyone,
I see that the National Health Service is falling further behind in cancer diagnosis and treatment. Not just the Norfolk and Norwich hospital then. I was seen at the hospital cancer clinic 15 days after reporting my lump to a GP at my local surgery. I was given a mammogram and an ultrasound at the clinic and was diagnosed immediately. I was given a guided core biopsy straight away. It took one week for an appointment with my breast surgeon and for the the initial pathology report to arrive. My full report with HER 2 status arrived one week after that. The date for my surgery was set right on the 62 day NHS target time. However, surgery on the date cannot be guaranteed as the hospital has higher than the national average number of cancellations. I paid for my mastectomy just for peace of mind. I'm not proud of myself for queue jumping, quite the opposite in fact. I was just too frightened to risk waiting.
The physical and psychological damage done to cancer patients who face long waits cannot be quantified. Many cancers are slow growing, but others grow and spread rapidly. In a wealthy country like ours I have no idea why this is being allowed to happen. The NHS is the best thing that ever happened to the United Kingdom.
Well, that was grim! On a happier note, I hope you all have the opportunity to make a few happy memories this weekend. Mary, I Hope you're giving California a run for it's money 🥂🍾
Gill X
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Hello Mary,
I do hope all will be back to normal soon with your foot. It seems that there are so many after effects of chemotherapy that we have to learn to live with.
I do agree that getting older is more expensive in many ways. Raymond and I seem to be paying out quite a bit with our dental visits, as well as the podiatrist, not to mention various toiletries and supplements from Holland and Barrett or on-line. We try to get the purest things available and organic.
It is quite frightening watching the increasing numbers of people getting some sort of cancer. It seems to be everywhere around me.
I shall be thinking of Chris Woollams for his 70th birthday on July 4th. I have followed him ever since diagnosis when I picked up a copy of icon magazine at the hospital on my first visit for a definite diagnosis, mammogram, ultrasound and biopsy. That magazine was my guiding light. It does not seem to be around much any more. His on line information seems to spread wider and wider. Have you ever been on his forum on Facebook? I have not, mainly because I do not want to be involved with Facebook.
Marias has vanished again and I do hope all is improving with her. I fear that Hanieh has disappeared for good and I do hope she and her family are fine. I do hope we are not going to get into more wars again.
You know that I always welcome your comments about WDDTY.
I do hope you will enjoy your break in California.
It is not at all like June weather here and we have now had too much rain!
Brexit groans on and we are going through the tedious journey for the election of a new Conservative leader and therefore Prime Minister. I think we should just have a General Election and get in some new people, as our present Parliament is not much good.
That is about all for now. It has been a busy week and I am hoping for a relaxing weekend.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I do hope the discomfort that you have will gradually decrease and that you will be able to avoid a bone nuclide scan.
The other scan, a bone density scan (DEXA) I think all breast cancer patients should have before and after treatment. It is good to know what the state of your bones was before treatment and what it is after treatment, so that you know what damage it has caused.
I do hope all goes well with your Zometa (zoledronic acid) infusion in July. It is not something I have ever wanted to have. I was offered Fosamax (alendronic acid) for my chemotherapy induced induced osteoporosis, but refused to have it because of the harmful side effects. I get my calcium from the food I eat and take 4,000 IUs of vitamin D and 100 mg of magnesium. I also try to keep active.
I was sorry to read that Michael has recently been diagnosed with type 2 diabetes. It is a nasty disease but it can be controlled through an anti-diabetic diet. Dr Mosley did programmes about this on the television and has written books. He reversed his own type 2 diabetes.
It is true that the thread has a lot of information on it and we do talk about so many different things. I do love the friendliness and the sense of humour. Susie has a great sense of humour and can always make me chuckle.
The lawns did get cut and we were very lucky. It looks as though there is more rain for the weekend. It has brought a lot of plants into bloom.
I do hope you have a good weekend.
Regards to Michael.
Love.
Sylvia xxxx
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Hello Gill,
I have just seen your latest post and I do agree with everything you said about what is happening with our NHS. The creation of the NHS was definitely the best thing that ever happened to this country and I think the 1945 Government was the best one we have ever had. The powers-that-be are systematically undoing everything and privatisation is the name of the game. I fear that Donald Trump has his eyes on our NHS.
It is true that we are a rich country, but the wealth has not trickled down to the population at large. The wealth is owned by 1% and they could not care less about the 99%! They talk about equality and fairness but that is as far as it goes. There is a let them eat cake attitude among the wealthy and it makes me sick. I do hope that Boris Johnson will not be the next Prime Minister and I do not think much of any of that merry group of men up for leadership. I noticed that they have made sure that the two women are out.
Thank you for your great input on the thread. It amazes me that you have sprung back so well after all that you have been through.
Have a good weekend.
Love.
Sylvia xxxx
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Hello everyone,
I just wanted to send best wishes to everyone who has been posting and viewing.
Best wishes to Val, Viewfinder, adagio, 53Nancy, Susie, Flo, Marias, Hanieh, Helenlouise, Kath and Jags56, and many thanks to Mary and Gill for their effort on the thread this week.
Relax and enjoy.
Love.
Sylvia xxxx
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Hello Sylvia,
Hope you had a relaxing weekend. I wish the weather would sort itself out, it's supposed to be June. We shouldn't complain too much when parts of Lincolnshire are flooded and many people homeless. I cannot imagine what it must be like to go back to a soaking wet house full of mud and ruined furniture.
I'm rather surprised by how quickly I've sprung back myself. Whilst chemotherapy made me extremely ill and the C.difficile infection whithout the white cells to fight it was very dangerous, I've actually been left with very few side effects. Those I do have, like 'chemo brain' and loss of taste are probably only temporary. The tiredness will wear off over the next few months. Peripheral neuropathy and lymphoedema were the conditions I dreaded most as they can be so hard to cope with.Not only did I avoid the worst, I didn't even lose a single fingernail or toenail.
Like you, I also fear that Donald Trump has his eyes on our NHS. He and Johnson are far too close for my liking. I think that many of us would fight tooth and nail to keep the NHS free, it's just too important to hand over to the disgustingly wealthy without a fight. I sometimes think that the UK is heading towards a revolution.
Michael has been put on an anti-diabetic diet, but will look at what Michael Mosley has to say, as he managed to reverse his type 2 diabetes. Michael is at an early stage, so has a good chance.
Hope we see the return of some old friends on the thread this week. I was wondering how Flora's mother is. Marias, Helen and many others are also in my thoughts.
Enjoy the sunshine if you have any today.
Love,
Gill X
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Hi to all
It is so beautiful here, I can see why people put up with high cost of living, traffic congestion and so on. We have been on only a small part of California coast, I will try to take more pics today when we go today in a different direction.
Year-round mild weather, I hear, not hot nor cold, with rainy seasons and dry seasons..
Mary
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hi Gill and Sylvia
I was puzzled by the comments linking Trump and NHS, since I don't pay much attention to news when away. So I read about his appearance with Theresa May and the comments made about a trade deal, I suppose it raised the possibility of parts of NHS being privatised? Now the comments have been walked back, I hear.
That being said, it does seem from hearing what you say, that NHS needs something done to it to improve service. 68 days to wait for mastectomy is much too long, I hope someone could be put in place to address some of these things for UK. It's a big problem, for sure.
Back to vacation now. We were on a tight schedule for 2 days and were exhausted, now have been sleeping in and being fancy-free.
Talk to all soon, Mary
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Hello Gill,
Thank you for your latest post. It is good to know what an excellent recovery you have made from all your treatment. It is great motivation for any newly diagnosed patients who may be viewing. It is true that we all react differently to the various treatments and I think a lot depends on our state of health when we begin.
I do agree with you about the state of the UK. I do not feel optimistic about the future of the NHS or indeed of this country in general. There is so much selfishness and greed. Did you see the programme Despatches on Channel 4 on Monday evening? It was a truly frightening revelation about what is happening with prescribed drugs. The criminals have got hold of them and we do not know whether the drugs being used in the UK have been contaminated in some way and whether they actually work. I was shocked at the mention of the drug Herceptin used for HER2+ breast cancer and whether it is working for patients because of adulteration. These are prescription drugs used in the health system and not anything bought online and the system does not seem able to control it. It means that we do not know whether we are getting a genuine drug or not.
Have you been watching the Conservative leadership debates? I have found them an absolute disgrace. It is frightening to think that one of these will become PM.
The thread is not doing well lately and I tend to think that a lot of the information with regard to breast cancer treatment must be quite well known now.
It is true that we are not hearing from people that made the thread quite active.
I do hope that Michael does well on his anti-diabetic diet.
We have had some well needed rain and now need some sunshine.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your photograph.
I was not surprised by Donald Trump's comments about the NHS. So much of our once wonderful NHS has been privatised. It is very sad but it has been overwhelmed by too much demand and too few medical staff on the front line. I wonder how many people know in this country that Boots Pharmacies is now owned by an American company. Boots was always a part of the UK, along with Marks and Spencer. From the programme I mentioned to Gill, I discovered that Lloyds Pharmacies are also owned by an American company. It amazes me that we have sold off a lot of our businesses to foreign countries.
I do hope you are enjoying your holiday.
As you can see, not much has been happening on the thread this week.
Tomorrow June 20th it will be 14 years since I was diagnosed with breast cancer. It does seem a long time ago.
Thinking of you.
Love.
Sylvia xxxx
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Hi Mary,
When Donald Trump visited the UK in early June, he talked about offering us a 'phenomenal' trade deal with the United States post Brexit. He also said that everything in the UK would be on the table including our NHS. After a public outcry, he backpeddled, telling us that the NHS would not be part of the deal.
The NHS has been starved of money by the Government. Also new NHS hospitals have been built by PFI, (Private Finance Initiative), leaving Hospital Trusts with massive debts and very little money left to spend on staff and equipment. If people want private health care there are a number of insurance schemes available. There a private hospitals in most, if not all cities.
The photograph shows a beautiful coastline. Imagine the weather being not too hot and not too cold - perfect.
I like the idea of sleeping in and being fancy free! Enjoy every minute of your holiday.
Gill X
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Hello Sylvia,
I had read reports about fake drugs finding their way into our health system some time ago. However, I had no idea how widespread the problem was until earlier this week. I haven't seen Channel Four's Dispatches programme yet. I must say that I'm dismayed to learn that Herceptin may have been adulterated. As if women with breast cancer don't have enough to worry about. I suppose this is going to cost the NHS many millions of it's precious money as drugs will now have to be tested on a batch by batch basis. There are some truly evil people in this world.
Michael is off to see his GP for test results this afternoon. I'm impressed by the care that he's being given. Diabetes is very expensive for the NHS and goes hand in hand with the obesity crisis, though obesity is not the cause of Michael's diabetes.
I watched part of the Conservative leadership debate, it was all too safe for my liking. BBC Question Time would have provided more meaningful scrutiny. None of candidates come anywhere close to Prime Minister material. Michael and I found ourselves sifting through a list of long retired ministers and wondering if one of them could be persuaded to step in!
Congratulations on being 14 years away from your diagnosis tomorrow.
Weather here cool and cloudy. I went for a walk on Cromer beach yesterday afternoon while the rain went away for a few hours.The tide was in so didn't manage a very long walk, but did get some sunshine. Rained very heavily on the way home and kept it up all night.
My very best wishes.
Gill X
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Hi Sylvia,
Just checking in to say hello, and congratulations to you on reaching 14 years since your cancer diagnosis - you are doing all the right things. How is your lymphodema arm doing these days and your eye? I hope that they are improved. Your life certainly sounds busy enough with looking after the grounds of your apartment complex, but honestly I would rather be busy than bored.
I have been keeping quite well - walking lots and doing my best to eat well and keep up with supplements. I sometimes fail and eat desserts and drink wine -but try not to feel guilty about it. I have plucked up the courage to go for a mammogram tomorrow - it has been 2 years - hopefully it will be OK. I will also go for my annual blood tests soon and I had a DEXA scan done a couple of weeks ago. I have not seen my GP since she gave me the requisitions, but should go and have a visit with her soon to talk about the results of the tests. My husband is improving after his accident - still does not have full function or feeling in his left hand fingers - but it could take up to a year - according to the neurosurgeon.
I have been following the How to Starve Cancer group, where they talk about blocking the metabolic pathways that feed the different cancer types - it is very, very scientific and mind boggling for me, and I have found it to be quite depressing at times because it involves taking massive supplements several times a day, and I am not really into that - although I am always eager to learn and try to keep up to date with the various approaches to alternative cancer treatments.
I like to spend summers in Vancouver since the weather is generally good and I do have my vegetable garden that keeps me busy, and I love having all the fresh produce straight from my backyard. My garlic is almost ready for harvesting - 2 more weeks! We have no house guests this summer (so far) which will be the first for many years - so things should be a bit more relaxing for me.
Wishing only the best for you and your health - and thanks for your commitment and dedication to supporting all of us through the various stages of our journey. Take care, Sylvia.
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Hi Maryna - so lovely to see the photo of what you are experiencing in California - it is a beautiful part of the world, for sure. I hope you had a very nice time.
I am glad that your shoulder is continuing to improve - albeit, slowly. I must say that I admire your patience to go at such a slow pace with your rehab and it is sure to benefit you greatly in the final outcome! Shoulders are very challenging and can take a long time to recover - I had frozen shoulder that lasted for almost 2 years - the exercises were excruciating to do, but I did them and in fact I still do my pulley every once in a while. I think that is the one that I benefitted from the most.
I am doing fine - feel good and getting the tests done that I mentioned to Sylvia - I really do dislike going to doctors and getting tests done - but I did it this year since last year I took off from tests! My husband is very slowly starting to feel better - and sees the neurosurgeon again next month for a follow up.
I hope that you have a great summer and that the weather does not get too hot for you. We have had some very hot days here in Vancouver and desperately need rain.
Keep taking care of yourself Maryna and wishing only the very best for you!
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Hello Gill,
Thank you for your latest post.
I was glad to read that Michael is getting good care for his diabetes. I do hope he gets good results from his test results with the GP. I think the secret to reversing diabetes is with good nutrition and I think all of these chronic diseases can be helped with the Rainbow/Mediterranean diet. Being overweight seems to be the most common cause of this disease, but now always. I think the earlier you start trying to reverse diabetes the better. I do know that long term treatment with steroids puts you at risk of diabetes and of course steroids make you put on weight. There are probably other prescribed drugs that make you put on weight, such as tamoxifen. I also think that GPs keep lowering the numbers at which you are told you have diabetes, and the same goes for cholesterol. They want to push their drugs.
I am not at all impressed that the main two contenders for the Conservative leadership are Boris Johnson and Jeremy Hunt, but then I would never vote Conservative. As Jeremy Hunt keeps saying, they are the party of business and I say they are the party of the Establishment. I still wonder whether Brexit will be delivered.
Thank you for your congratulations on my having achieved 14 years since diagnosis on June 20th. I must admit it seems a lifetime ago and if I think of my life there is definitely a strong feeling of a before and after diagnosis.
The sun is shining here this morning in Exmouth and it may be that we shall have a dry day. The rain has definitely worked wonders on the grounds here.
I have been to Cromer a couple of times and I really liked it.
Have a good weekend.
Love.
Sylvia xxxx
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Hello adagio,
Many thanks for your post and it was so good to have you on the thread.
Many thanks for your congratulations for my 14 years since my cancer diagnosis. As I told Gill, it does seem a lifetime ago. I was with the hospital for check ups for 10 years and so it just 4 years that I have been completely liberated from the hospital. I still think about the possibility of recurrence or spread, never take anything for granted, and never consider myself cured.
My lymphoedema does not bother me at all. I discharged myself from the clinic last January because I felt I could manage the lymphoedema myself and that is what I am doing. I have been told I can go back to the clinic any time I like. I have not worn a compression sleeve for a very long time and with or without it my right lymphoedema arm is only slightly larger than the left and that is at the elbow point. The rest is the same as the left arm. I still do exercises.
As for my eye, that was a whole saga in itself. The sty healed but the red in the corner of the lower right lid continued. I tried silver colloidal drops and they helped a lot. I ended up paying £25 to see my optometrist for a special eye health examination, which was very thorough. She said the sty had healed but that there was a little bit of inflammation in the eye, but there was nothing to worry about. I did see my GP later and she said there was a tiny cyst on the lower eyelid that would probably disappear. It is hardly noticeable now and does not bother me. I am convinced that all the eye problem stemmed from the nasty viral infection.
I do agree with you that keeping busy is better than being bored.
I was very interested in all that you had to say in your post and it was good to catch up.
I was glad to know that you are keeping well, walking a lot and doing your best to eat well. I would not worry about a few treats when you feel like it.
I do hope you will get good news from your mammogram tomorrow and good news from your annual blood test. I would be interested to know the figures that are being used by the Canadian Health System to diagnose high cholesterol, diabetes or pre-diabetes and hypertension. I would also be interested to know about the results of your DEXA scan. I am not doing any kind of tests and have decided that all these figures give patients a source of anxiety.
I was interested to know that your husband is improving after his accident and I do hope he will get full function of feeling in his left hand fingers in time.
I was interested to know that you have been following the How to Starve Cancer group. Is that on bc.org? I do not think I would be interested in doing anything that requires taking massive supplements several times a day. Most of these supplements have fillers which concern me. There are supplements without fillers but they are very expensive. I do not believe that anything can beat a healthy diet based on fruit and vegetables and that shuns junk and processed foods. The only supplement that I am taking on a regular basis is vitamin D, 4,000 IU, soft gel. For my osteoporosis I am eating nuts, seeds and beans mainly, along with some soy yoghurt.
I can understand how you enjoy summers in Vancouver and a vegetable garden is such a good way to get fresh vegetables.
That is about all for now. Take care and pop in when you can.
Love.
Sylvia xxxx
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Hello everyone,
I am just popping in to wish you all a leisurely weekend. Enjoy the summer days, unless you are in Australia!
As I have said, I have now reached 14 years since diagnosis. If I can do so can you.
Best wishes.
Sylvia xxxx
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Hello again, everyone,
I am posting my story again, especially for the benefit of any newcomers. I want to say that if I can get this far, so can you. All newcomers are welcome to post about anything that is bothering them and we shall try to help.
Sylvia xxxx
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I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.
I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.
I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.
That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.
Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.
The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.
At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.
In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.
I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.
Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it.
You can get through chemotherapy. There is life after it.
Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.
I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.
When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.
Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.
Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.
As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.
Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.
I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can.
I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.
Most hospitals here have charities offering all kinds of support to cancer patients.
I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.
Breastcancer.org is a wonderful forum and providing a marvellous service.
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HI, Sylvia
Another weekend, it has been a busy week, we are having lots of storms still and strong winds and rain.
I had a good time on my trip, we were on and near the coast in mid-northern California, a very beautiful area. We attended the PGA (professional golf association) golf course at Pebble Beach, which is basically in Carmel and Monterey, for two days, and took in the sights for a few more days.
I am glad you posted your cancer journey story again, it is very detailed and shows how a good treatment plan can work out well.
Speaking of politics: There is something I don't understand: you have said many times you would never vote Conservative, and yet it is the Conservative candidates for PM who seem to be most strongly pro-Brexit, from what I glean in my casual reading about UK politics. I did see also that while Jeremy Hunt was in charge of the Health, the NHS saw less funding. I can see that would make him unpopular!
US politics is now all about the Presidential election in 2020. There are 24 people who will be vying to be the candidate on the Democrat side. Right now Joe Biden is thought to be the leader among those, at 77 years old. I'm sure things will change. Iran is making noise, and has destroyed one of our drones, but still we only hear about all this other drama, and the only thing that seems to matter is how this affects our election. Our news media is a disgrace.
I do hope Hanieh and her family got out of Iran, as she was trying to do.
Off for now, talk soon
Love, Mary
My shoulder is progressing, I can tell I'm getting stronger. I keep up with my therapy appointments and exercises, and those do make things hurt but I am putting up with that.
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Hi, Gill
I had a nice trip and the flight home was without fault, for once. Short layover, and smooth flights that landed quicker than expected. Short walk to the car, but then the long drive home(2 hours), which was also without a problem. I am glad I didn't have to stay in Phoenix, Arizona. It was 105 F(40.5C), and it was very hot just sitting on the next plane while boarding.
I am sorry about Michael being diagnosed with diabetes, and I am glad he is taking care with it. I have a friend who just got diagnosed with diabetes, at the same time as being diagnosed with lung cancer. She went to have her lungs checked out, and has been told about both conditions at the same time, she is now taking 4 shots of insulin a day, along with a pill. The disease is quite out of control in her case, the docs predict it will get better as she regulates the insulin. Her problem now is she has no idea of a proper diet, they have given her information on such a diet but it is very alien to her, she is someone who is used to drinking soda pop and sugary tea and eating as she pleased. As for the lung cancer, she has been told it is contained in one lung, and will probably be operated on soon. Good news on that, anyway! She sees her Oncologist and surgeon next week, and will find out the whole story on that. What a mess. I wonder why Michael has been struck with this, is it in his family?
While in California we spent one afternoon walking on the Santa Cruz pier, watching the boats, birds, and seals and had late lunch next to the beach. We began talking to the couple and 2 children next to us, who were from UK but living in San Francisco. They were very warm and friendly, I found myself telling the lady about all of you, Sylvia in Exmouth, and you in your marshes (couldn't remember the name!), and Susie going to theaters and art museums in the city. She told me a lot of things about the areas(she guessed you to be in Norfolk), and we had a very good time talking with them and their very well-behaved children.
It is also raining and stormy again here this morning, we have had so much of this wet weather too.
Talk to you soon, love
Mary
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Hi, Helen
I am sorry for my delayed response to your last post, by now I suppose you have had your phone call summoning you to the Hospital to check out your options? I hope all goes well there, and successful plans are made for you.
Perhaps the vacuum machine will be removed then as well, I do hope the wound is healing well now. I remember years ago my husband had a large hematoma on his leg, he delayed having it looked at and then needed surgery to debride it. We had to pack it for months while the hole healed from the inside out and it was a slow process.
You have certainly been through a lot, I read your diagnosis history and saw that it all started with DCIS in 2013, and went on from there. You are one tough cookie, and I hope for the very best for you.
Keep us posted! Love, Mary
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Hi Mary, Sylvia and all, my wound is healing albeit slowly. Still have farty box and hope it will be traded out for something much smaller this week. No news from trial doctors. I think they may want the wound fully healed before they will consider me for trial ( only my guess but no word from them as yet). Scans for re-staging tomorrow, surgeon Tuesday to reassess the wound, then oncologist Thursday. So I will have a better picture of where I am at by weeks end. Not enjoying being in limbo and slowly adjusting to not being at work. We have had a beautiful winters weekend with low temperatures but sun shining. Spent time with friends and enjoyed good company, wonderful food and some wine. I hope you all are enjoying whatever you do on your weekends xxx
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I like to do my own farting.
Susie
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Hi Sylvia, Hi friends !!
I just wanted to pop in and say hello and see how everyone is doing.
I don’t know if you remember me but I was in and out of the forum quite a lot last year during mums treatment.
It’s been a year now since her last chemo treatment, which she followed with 4 weeks of radio.
She is progressing very well, it took a while to get her energy and health in order but all in all very well. She’s still on her mistletoe treatment which she will continue for the next 5 years + ( she is very happy with it thank u SO much Sylvia for introducing us to it )
Couldn’t have done it without all your support ❤️
I’m sorry I have not been on frequently, I have been caring for my dad which has been consuming the majority of my time.
I can’t wait to hear from you all and see your updates. I hope you’re all well and healthy. You’re all always in my thoughts.
Kindest
Sarah xx
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Sylvia !! congratulations on the 14th year of being a strong warrior !!! ❤️ Honestly would not have had the strength and knowledge to help my mum without you and all you beautiful women !!
Celebrating you all always !!
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Hello all
Sylvia congratulations for 14 years. You are indeed a great motivation . Hope you have many more healthy years ahead .
Still busy with my renovation.
Love
Jags
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Hello Mary, HelenLouise, Susie, Jags56, and Love and Light (Sarah),
It was so good to open up the computer this Monday morning and find all your posts. I shall reply later today when I have finished my chores.
Sarah, I was thrilled to find your post and to have your news. I had not forgotten you and your mum and was wondering how you are.
Talk to you all later.
Love.
Sylvia xxxx
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Hallo everyone this is my first post on this thread. I have two breast tumours in the same breast - one is actually beneath the breast and is Oestrogen positive the other smaller one found at the time of the first diagnosis is triple negative. I am having targeted therapy for the first tumour but at the moment no treatment for the second. I have been on this therapy for 6 months with regular MRI's to keep an eye on both. I am seeing my surgeon next month to discuss surgical options but my oncologist reckons the one under my breast is inoperable. My surgeon says I need a mastectomy so who to believe.
Can you tell me more about the mistletoe therapy as I have never heard of it. Do you need to go to a centre?
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Hello Mary,
Thank you for your latest post on June 22nd. I was so glad to know that you had a good trip.
I thought it would be a good idea to re-post my cancer journey story again, in the hope that it would help people
it is quite difficult to explain politics in this country. It has got very complicated since the referendum of June 23rd 2016, when the people of the UK were asked whether they wanted to stay in or leave the EU. With hindsight this question was a bit too simplistic, given how complicated it really was to leave. The Leave vote won by 52% to 48% Remain and there have been ongoing discussions, fighting and manipulation ever since. The two main political parties were divided within their various factions over this. There are Leavers and Remainers in both parties, but the Conservative government led by Theresa May were mostly Remainers, especially her cabinet, not to mention her. I think people like Boris Johnson are interested only in themselves and I have never really believed he wanted to leave. Jeremy Hunt was also a Remainer. I would not trust either of these two people. There is a small group of MPs within the Conservative government knows as the ERG and they are the people claiming to be Leavers. First and foremost, these people are Conservative and want to make sure they keep their seats and their privileged lifestyle.
As for the Labour Party, they have been all over the place. They were Remainers in their manifesto but said they would respect the democratic vote of the people, but of course they have been messing about and sitting on the fence. Again the Labour Party is divided between those on the Left that support Jeremy Corbyn, and those in the middle who are really Blairites and who want to remain. Jeremy Corbyn has always been a Euro-sceptic but he has been pushed around by other MPs.
I do not know where we are going with all this but it will not be my future. I think we might be heading for a General Election and/or another referendum or a People's Vote as it is being called! After three years of this I think we are all sick and tired of it.
Have a look, if you can, at the next Prime Minister's Questions and you will see how awful this session is. Questions are rarely given answers.
I hope this explains a little bit about what goes on here. It can be summed up by 'we muddle along'.
I have been following some of the news about your Presidential Election for 2020 and I think it all seems a bit of a mess.
I think our news media is, on the whole, a disgrace as well. I tend to make up my own mind. I do not watch BBC News very much. The BBC is too Imperial for my liking.
Like you, I do hope Hanieh and her family are alright.
I am glad to know that you are making progress with your shoulder and that you are getting stronger.
That is all for now. I have had a busy day and am trying to catch up with the posts.
Love.
Sylvia xxxx
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