Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Mary,
Thank you for your PM. It is interesting to learn about American history from the point of view of an American.
I do agree with you about all this political correctness over statues etc. It is the same here. As you say, it is a denial of history at the time it happened. It is getting very bad here at universities where students are banning people from speaking when they do not agree with their views. I think the universities have been dumbed down. along with everything else.
I loved history at school but I realised long ago that the history I learnt was, it seems, always from the point of view of the victor.
That is about all for now.
Love.
Sylvia xxxx
0 -
Hello adagio and Hanieh,
Thank you for your posts. I am trying to catch up but I shall answer during the course of the week.
Love.
Sylvia xxxx
0 -
Hello all,
Passed my one-year mammogram with flying colours -- 'everything looks fine'. I have always found the women who do the routine mammograms to be very grumpy but the breast-cancer one at Ealing Hospital was very pleasant and friendly. She also had a new, smaller machine which was less uncomfortable than I was used to. It was all done in five minutes then, five minutes after that, a doctor came to tell me she'd looked at it and it was all good.
Susie xxx
0 -
Congratulations, Susie! What great news!
0 -
Susie - many congratulations on the clear mammogram! You must have a spring in your step today...
Gill- interesting what you say about your hospital seeming to hold it against you that you visited Dr H and are now "demanding" treatment! Patients are always entitled to second opinions, and good doctors should be able to accept that and move on.
We have been lucky in this respect in that Dr H referred us to a different Oxford oncologist from the one we first saw (the new oncologist, Dr L, is the head of the department and Dr H had worked with her before) and she was similarly perplexed as to why the first doctor had suggested no treatment. Apart from the aforementioned episode involving prescribing the anti-sickness drug my mother was allergic to, she has been very good. It is not her fault that my mother is paying, and I have to say that my mother has "enjoyed" certain aspects of the private chemo experience.
Anyway, I'm sorry that your oncologist has not been as humble. Well done you for battling on, and please carry on demanding what you feel is in your best interests. I'm sure it must sometimes feel very exhausting to be having to do this though...
Hello to everyone else!
The snowdrops are out in abundance,and, for the first time in 10 weeks, my sinuses don't feel congested (I'm not one for supplements generally but a friend recently recommended some concentrated curcumin (extract from turmeric) supplements called Theracurmin, which are supposed to be an excellent anti-inflammatory, and I started taking them a few days ago. Coincidence? Probably. Maybe my sinus problem had just run its course..or maybe it was due to me giving up and going to bed for most of the last few days - I'll never know) so I also have a bit of a spring in my step today!
Sorry, I don't mean to be insensitive in going on about sinus problems. It has been pretty miserable but is obviously nothing compared to what you have all been going through. But my mother always says that continuing to complain about "everyday" type problems is the best way of reassuring her that I still see her as HER rather than as a cancer patient to be tiptoed round. That is the spirit in which I talk about my sinuses!
Flora x
0 -
A pic my daughter took with her iPhone of one of the regular dust storms we have rolling in to town caused by the drought
0 -
A pic my daughter took with her iPhone of one of our many dust storms rolling in to town because of the drought
0 -
Kathseward...what an incredible picture!
So hard to get our heads round the incredible heat you're having in Oz, as we're having a really prolonged cold spell over here in the UK.
Anyway, stay safe...
0 -
Went to Aquacise this morning for the first time in ages. It was still below zero when I set out but the pool water was lovely and warm. Even though my hair is still very short, I wore a swimming cap as I wasn't sure that it'd like chlorine at the moment. A good workout and great camaraderie.
I've been texting and emailing friends and family to tell them about my clear mammogram and many say 'well done' as if it was something I, personally, had achieved. Bless them.
Susie xx
0 -
oh my goodness Kath, I get antsy when it finally rains and there dust in the rain and everything gets dirty. That is really something. Hope you get rain soon.
Hope everyone is doing well. Congrats Susie on a clear mammogram. I do read but don't post much these days busy back at work, which is great but tiring. Especially with the heat.
Best wishes to you all.
0 -
Hello everyone,
First of all, congratulations Susie. As you said at the very beginning of 2019, ' last year I had breast cancer'. It must be an amazing feeling.
Flora, I have a friend who suffered dreadfully with her sinuses. She virtually hibernated during the Winter months as she couldn't tolerate the cold or wind on her face. Pleased your pain has eased off and don't apologise because congested sinuses seem insignificant, they're not..
I think I have to put your mum's being refused treatment and my similar experience, down to Oxford and Norfolk running out of cash. I had my PICC line flushed yesterday and the waiting area for patients having chemotherapy was absolutely full and it's a big area. That should never mean depriving cancer patients of treatment but the Government has clearly abandoned any idea of saving the NHS.
The snowdrops are about to flower here too, a sign that Spring is on its way. If my body could just behave itself for the next month, I will be free to enjoy it. Unfortunately I still have some of the symptoms of Norovirus, though I hope to restart Paxlitaxel this time next week, January 7th, I've been telling everyone it's the 10th - chemo brain really does exist it seems.
Kath's daughter's dust storm photo is amazing. I guess dust storms must make life very difficult for people though. Here in the UK we rarely experience extreme conditions, a few centimetres of snow brings the country to a grinding halt these days.
Sylvia, thank you for the information regarding Zoledronic acid. The potential for side effects does worry me, but most Oncologists seem to feel that the benefits outweigh the risks. I don't know if I'll continue with it though.
Mary, I keep wondering what the weather is like where you are. There's been a lot on the news about the problems in the Mid West of America. It seems incredible that people cope in such extreme cold.
Viewfinder, I hope that your sister's cold goes away very soon. It would be very difficult to cope with chemotherapy and a cold at the same time. Remember to look after yourself too.
Best wishes to everyone.
Much love,
Gill X
0 -
Hi, Hanieh
How very interesting about the differences between life in Iran and in Turkey, and thank you for the insight into that. I do remember when the Shah was deposed and the Ayatollah Khomeni came in. I worked with several people who were from what was then Persia, and were students in US. They had to leave very suddenly when the regime changed, my understanding was that they had to go back, they had no choice. I cannot pretend to know everything about the transition, and exactly why it happened, but the geopolitical maneuvering can be very disruptive, and it seemed to only set Iran (Persia) back in time. I also do remember much of the cause was the uprising of Shia who believed that the Shah was bringing policies of "too much" modernization including more freedom for women and more building of infrastructure. I had made friends of some of the Persian students and didn't like to see them go so suddenly into an uncertain situation and most of them did not want to go at all but were worried about their families. That was the end of our influx of Persian students.
I see that you plan to spend vacations in Turkey and live in Iran until your daughter finishes school. That sounds like a good plan. I would like to try some of their restaurants in Turkey. When I was on the cruise that touched down in Greece and Croatia, we were also supposed to go stop in Turkey but it was cancelled because of unrest somewhere in the country.
Your hair looks beautiful! How fun that you had hair extensions, is that a long process to put them in?
I like the candle-lighting too, I always light one for you and Marias, one for all for my friends here, one for my family, and one for my church family. And more as the whim hits me. I am very glad you are feeling so well, and your family too.
Talk to you again soon, love
Mary
0 -
Hi, Gill
I'm glad you are slowly recovering from the double whammy of Paclitaxel and Norovirus. That is a big deal and probably each one makes it a longer recovery from the other. Don't feel bad about cutting your dose of chemo, mine also had to be cut because my neuropathy along with other side effects kept getting worse with each dose. Plus my 5-day hospital stay didn't help things.
I am so sorry your hospital situation is getting so difficult. I had to look up PFI, and learned it is because some of your hospitals were built with loans from Private enterprises and these loans have to be paid back now, with I suppose lots of interest. One of the problems was that the hospitals took so long to be built, in some cases 5 years and more, that there was no money coming in to pay on these loans and that started the snowball of debt growing. Is any of that right according to you?
Here too it is very important that someone is keeping a watchful eye when a loved one is hospitalized. It is far too easy for very busy, short-staffed and exhausted employees to overlook something. Doctors usually fly in and out of the room very quickly and then leave notes for staff, but one does usually see them on a daily basis if hospitalized. I was also able to see my oncologist when I wanted at any time through treatment. The nurses are wonderful for the most part, but there again, it is up to the patient or knowledgable companion to be aware of things.
Gill you sound on the upswing, keep it going and I'll be thinking of you. I am going to light a candle just for you too, along with the rest of the group which I already do. We have to get you through this chemo, hopefully with no more hiccups.
As for the weather here where I am, yesterday morning was -5F, which is -20C. The temp only rose to 9F yesterday and then down again last night, and we got some snow overnight. Today promises to be in the 30sF, so much better. When I see how the weather is in Chicago however, it is much worse, they are having much more extreme than we are and it's lasting longer, they are about 8 hours drive to the north of me and are having -23 this morning (-31C) and we are on the southern edge of this polar air system so it will lift away from us hopefully later today. Hope it heads back to the Arctic soon!
Talk to you again soon, love
Mary
0 -
Hello Gill,
I do understand that the potential for side effects from zoledronic acid worry you and I think you are right to be worried. Oncologists will obviously be on the side of their drugs but that does mean that you as a patient have to be. It seems to me that there is a push towards using drugs more and more and for every purpose that can be found. If that were me and going through chemotherapy I would just stick to my chemotherapy regimen and not take anything else. It was not offered when I was going through treatment, but the possible exception for me would be the Neupogen drug to try to avoid low white blood cells. I was lucky not to have to face that problem.
I do hope all will go well for you now. I know that you are informed and will stand up for yourself and not let yourself be pushed around.
I do hope you can get to read the book I have been mentioning, Snowball in a Blizzard. As I have said before, I think all doctors and patients should read it. There is so much in it and it does spell out the relationship that there should be between patient and doctor. What stands out in my mind is "If you feel you are being bullied, you are being bullied".
That is all for now.
Love.
Sylvia xxxx
0 -
Hello Kath,
Thank you for your most interesting photograph.
Here in the UK snow is being forecast, up to 7 cm. Watch out for UK wide pandemonium and the country coming to a halt. Once again, it will probably be the wrong kind of snow!
At least it will be a break from the world of the absurd that is our Parliament discussing Brexit!
Love.
Sylvia xxxx
0 -
Hi, Susie
Congratulations on your first-year mammogram results and glad it was not an unpleasant experience. I too find the new machines much quicker than the old, and since I only have one breast I am out of there fast.
Keep it going, your life sounds like you have a lot of fun and diversions there. The advantages of life in the city!
Love, Mary
0 -
Hi Flora
Writing to commiserate with you on sinus problems, Monday I was awakened very early by coughing fit, then blowing nose, and sneezing when I wasn't doing the previous two. That continued all day, yesterday I dropped in on the nurse and asked if she could swab my nose for a flu test. It was not flu, and I have no fever no I guess sinus issues is what it is. I am feeling quite wiped out too, and ready to go back to the island weather and warm sun.
Glad you are better, and glad your mother seems to be doing very well now.
Talk later, Mary
0 -
Kathseward,
Love the picture but I am so sorry you are having such a drought to cause such things. It must be a miserable thing to carry on through. Very dramatic pic, your daughter must have run for cover after snapping it.
Talk to you soon, Mary
0 -
Hello Hanieh,
Thank you for your post of January 27th.
It was most interesting to read about your English teaching experiences in Turkey and the differences in the standards of English. I was very glad to read that there are such high standards for English in Iran. I was very glad to read as well that your spoken English was so well praised in Turkey. It does not surprise me if your written English is anything to go by. The fact that you love the English language probably helps you to speak it so well.
Spoken English in the UK has in my opinion deteriorated. The young people here seem to speak a kind of mumbo-jumbo English and they keep putting the word 'like' in all their sentences. Their grammar is not very good either. Often some of the foreign speakers here speak better than English born natives. When I listen to English speakers here and foreign speakers, I know exactly when a mistake is coming. When Raymond and I were at school we were really pushed to speak and write correctly, but nowadays anything goes.
I was interested to know that your acquired accent is American. Is this because your teachers were American and/or that audios and videos were American? I think that American English is taking over. As for accents, there are big regional differences in both countries. Have you heard the Scottish and Welsh accents? There are big difference as well between north and south England.
As for Canada, they could not make up their mind whether to have British or American accents, so they went halfway between, as was their spelling!
I was very interested to read about what you said about Iran. I do remember when the Shah of Persia and his family had to leave the country and the Ayatollah Khomeini came out of exile in France and went back to Persia/Iran.
There is always this hostility between the West and other countries. It is all about being the most powerful and it is always the ordinary people of countries that suffer. There is always a lot of talk about democracy and equality, as well as justice, but the ordinary people do not see much of it.
I think everything is looking very dangerous at the moment and I do hope we are not seeing the beginning of World War 3. I do agree that politics is very cruel. The politicians start the wars and then use ordinary people as cannon fodder.
I did think that the Shah of Persia and his family went to the US, but it is a long time ago so I may be wrong.
You see, Hanieh, that we do not have to mention the BC word all the time. It is always a pleasure to discuss things with you. Situations do change, but it takes time and those with all the power have everything in their favour to keep ordinary people down.
Thank you for your photographs. In the one of you on your own I do detect a certain sadness in your eyes. The one with your husband and you shows a lot more happiness and your husband has a nice gentle face.
How is your daughter's generation coping with everything?
That is all for now.
Love.
Sylvia xxxx
0 -
Hi, Sylvia
In response to your last post to me, I do have a Smart TV but I don't have an excellent Internet connection since I live rurally. It works well for most things I do online but not well on things like streaming movies. I could pay more and get a little more oomph but not sure if it would still be enough. I am just in a bit of a dead zone for excellent connection here, but I am happy to have what I do.
I very much enjoyed my time in Canada, we started in Vancouver and made our way through the Canadian Rockies, where there seemed to be more wildlife on the roads than people. This is an amazingly beautiful part of the world. This was 40+ years ago, I'm sure it's different now as in more traffic on the road. When we came to Alberta, we went through Calgary and this seemed like cowboy country. My brother lived there years later for a while when he worked for exon Mobil. He said it was still much the same, they liked it. Saskatchewan and Manitoba seemed to flatten out and the fields would stretch out forever. Since we were traveling on foot and by rides, it was at times difficult to find enough traffic to get a ride. As I said, we were very adventurous back then! When we came to Ontario, we crossed the border into New York State. I have very pleasant memories of Canada with only one exception, which I will not go into right now, and it is no fault of Canada's.
It was very wonderful to hear from Marias and Hanieh and I think it was on the same day. Also wonderful that they seem to be doing quite well, although Marias is still undergoing a lot of tests, it seems.
I have been reading the article on Alzheimer's in WDDTY, it seems there are tests that can be run to see if one has this gene or that which means you will have more chance of contracting this dreaded condition. I don't see much point in that, since there's nothing to be done about it anyway, and it would just cause more worry. Good nutrition and supplements are what they seem to recommend, and I suppose to hope for the best!
My older car has been fixed finally, and I am trying to find a ride to go get it. I will talk to you again soon,
Love, Mary
0 -
Hello adagio,
I have finally found the time to sit down and respond to your post of January 27th.
I can understand your concern about taking bisphosphonates and I would not let myself be pushed or bullied into taking them. Wild horses would not get me taking them and I told my oncologist when I was diagnosed with osteoporosis after my breast cancer treatment that I would not be taking them. At the time it would have been the oral bisphosphonate known as alendronic acid. That is the generic name and one of the popular brand names is Fosamax, Fosamax once weekly. I know people who have had problems with this bisphosphonate. I have a friend who was on this oral one and she told me what a performance it was to take. It can cause necrosis of the jaw.
I shall post the pages from my BMA Drug Book for both of these bisphosphonates. Recently I have known people who are having the zoledronic acid through a yearly injection for osteoporosis.
I do remember my breast cancer consultant surgeon and my homoeopathic consultant talking to me about the oral one because I brought up in a conversation when I read it was being used for secondary breast cancer. They both said do not go near that any time.
I was appalled to read that because you have not taken any drugs any time for your osteoporosis, that you can have a bone density scan only every three years. I do not think this is right. Here with our state health service, my GP told me that if you are over seventy you cannot have a bone density scan.
I do hope you will have good news when you have your bone density scan (DEXA scan) in the Spring, but remember the medical establishment, when they do this scan, base it on the bones of a healthy thirty year old. That makes no sense to me.
I do remember that we have discussed this topic over the years and, like you, I do not think the answer to this lies with drugs. Ever since I was diagnosed I have been doing my best to get my calcium etc. from my diet, but not from dairy products. I regularly have soy or almond drink enriched with calcium, have plain soy unsweetened yoghurt (Sojade) and I usually have this on a bed of ground mixed seeds that I grind up myself (sesame seeds, pumpkin seeds, sunflower seeds and linseeds). I always buy un-hulled sesame seeds. I also eat plenty of beans, especially chick peas which are high in calcium.
I do take some supplements and have been doing so for a long time now, but I do have rest periods. I remember telling you that I take Solgar Bone Support supplements, but I take only one or two instead of the recommended four tables. These supplements are balanced and have the other required minerals in them. Each tablet contains vitamin D3, vitamin K2, calcium (as calcium malate, calcium citrate and calcium bisglycinate), copper, manganese, magnesium citrate, zinc and boron.
I take this calcium supplement with 4000 IU of vitamin D3 and from time to time extra magnesium.
I also try to get some calcium from my fruit and vegetables. I especially like Bok Choy and broccoli.
I have no idea what my bone density is. I tend to try to keep my posture good and keep an eye on whether my back is curving – so far so good!
It seems to me it would be a good idea to work on your osteoporosis through your diet and perhaps these supplements.
Whatever the verdict on your scan is, I bet you get prescribed medication.
I do not know how much reading you are doing these days. I find that I do not get to read as much as I would like. This month I have read a book that a nursing friend of mine mentioned to me.
I have to go now. I shall continue later.
Love.
Sylvia xxxx
0 -
Hello again adagio,
The book I have been reading is non fiction and is entitled Snowball in a Blizzard by Steven Hatch – The Tricky Problem of Uncertainty in Medicine. It is a book worth reading and it establishes the kind of relationship that should exist between doctors and patients. It is well worth reading because it writes about how uncertain medicine is. There is quite a chunk in there about mammography.
The conclusion of the book is really interesting. It is chapter 9 and entitled Conclusion: The Conversation – Just Trust Us.
The following quote that I underlined when reading: "One of the implicit goals of this book has been to offer a new version of medicine, one where the roles of doctor and patient are significantly redefined. At least in my model of medicine, patients should be the masters of their care, and doctors should be advisors – trusted advisors, one hopes, but advisors nonetheless. Yet doctors should not be expected to simply decree the major elements of a medical plan for a patient. Along with many other colleagues, I conceive of the role of physician as a guide to the perplexed instead of a general commanding troops in a war against disease."
Remember, adagio, it is your body and you are in command of what happens to it.
Raymond and I are fine in general but we seem to have picked up some kind of bug that is affecting our voice. We feel somewhat under the weather and are fed up with our weather of miserable cold damp and rain.
We have been enjoying a television documentary entitled The Great Canadian Railways, presented by Michael Portillo. He has been right across Canada from sea to shiny sea and it has brought back a lot of memories of our seventeen years in Canada.
Take care and keep with us. You must be one of the longest ones on the thread apart from me. Keep up the good work.
Love.
Sylvia xxxx
0 -
Hello adagio and everybody else,
Here are the two pages from my medical book about bisphosphonates that I promised I would post.
Love.
Sylvia xxxx
0 -
Hi sylviaexmouthuk
Hello Sylvia,
I have been wanted to get on for a while to thank you for posting my concerns with my high ki-67. It helped to know that some don’t even get told what their score is, I still have concerns because of the %’s that my MO gave me for reoccurrence, she’s not one to answer my questions, either she thinks I won’t understand her answer and simply doesn’t want to take the time to answer. She told me to not worry about anything that I hear or read about TNBC because if there was something worth pursuing she would tell me and I should trust her to do that. It feels like I’m caught because I see all of these trials and doctors prescribing outside of trials such as metformin and copper depletion but I can’t ask my doctor what she thinks of them. First she would say I’m not going to comment on anything that doesn’t have results and trust me I would tell you if there was something other than your standard treatment of care to do or take.
I’m having some anxiety because of this copper depletion and wondering if what I’m eating is high in copper (I pretty much eat a plant based diet). Maybe anxiety and worry just goes hand in hand with this type of breast cancer.
At any rate it’s hard not to think of all the %’s that they throw at you and to want something else to take or do to prevent reoccurrence. But thank you for posting the question from my private message I sent you.
Paul
0 -
Hi sylviaexmouthuk
Hello Sylvia,
I have been wanted to get on for a while to thank you for posting my concerns with my high ki-67. It helped to know that some don't even get told what their score is, I still have concerns because of the %'s that my MO gave me for reoccurrence, she's not one to answer my questions, either she thinks I won't understand her answer and simply doesn't want to take the time to answer. She told me to not worry about anything that I hear or read about TNBC because if there was something worth pursuing she would tell me and I should trust her to do that. It feels like I'm caught because I see all of these trials and doctors prescribing outside of trials such as metformin and copper depletion but I can't ask my doctor what she thinks of them. First she would say I'm not going to comment on anything that doesn't have results and trust me I would tell you if there was something other than your standard treatment of care to do or take.
I'm having some anxiety because of this copper depletion and wondering if what I'm eating is high in copper (I pretty much eat a plant based diet). Maybe anxiety and worry just goes hand in hand with this type of breast cancer.
At any rate it's hard not to think of all the %'s that they throw at you and to want something else to take or do to prevent reoccurrence. But thank you for posting the question from my private message I sent you.
Paula
0 -
Hello Paula,
It was nice to find your post on the thread and I do remember your concerns about high ki-67. For your own peace of mind just ignore any percentages you are quoted. All they do is make patients anxious.
I think you have every right to ask any questions that you want and that you have a right to get an answer. If that were me I think I would want to change my oncologist.
I do think she is right that you should not worry or take any notice about all the negative information concerning breast cancer with triple negative receptors. You have got through the treatment and must now concentrate on getting back to as normal a life as possible. We all get more or less the same kind of treatment and the only real difference is that after the treatment has finished those patients with hormonal receptors go on to anti hormonal medication for years and that is no picnic.
Could you remind me what this copper depletion is all about? Remember that copper is classed as a trace mineral but it is very important. If you are on a healthy diet your copper intake should be fine. The kind of foods that have copper are liver, shell fish, nuts, mushrooms, wholemeal cereals and dried pulses. All these are particularly rich sources. Tomorrow I shall try to paste a page of the BMA New Guide to Medicines and Drugs with all the information about copper.
Anxiety about breast cancer is not confined to TNBC receptors. I would think that the very diagnosis of breast cancer makes a person anxious, no matter what type of breast cancer it is and no matter what the receptor status is. All we can do is face the treatment, take care of ourselves, eat healthily, exercise (gentle walking), stop smoking, loose weight if you are overweight and from what I keep hearing stop drinking alcohol. I would add do not spend too much time in front of TVs, computers, etc.
that is about all for now.
Love.
Sylvia xxxx
0 -
Hello Sylvia, and everybody
But do we really need to be so anxious about breast cancer when the survival rate is 80%+? It seems to me that the media are always keen to report on famous women dying of the disease but we never hear about the tens of thousands of women each year who are treated successfully, because those stories don't sell newspapers.
I feel that this gives women who have just been diagnosed an unrealistically pessimistic idea about what to expect, as they immediately think that they're going to die.
Isn't it time to make it clear that one woman in 8 in the UK will get breast cancer and that most of us will be just fine?
What does anyone else think?
Susie xx
0 -
Hi, Susie
I think that's all fine unless you're part of the 20%. Not to mention the surgeries, the harsh drugs and the possible lingering side effects. You were one of the lucky ones and seemingly breezed through your treatment, but not everyone does. I suppose it is the unknown that causes us worry, and being thrown into the category of cancer patient does not give comfort.
I would say it's completely normal to be worried, and not knowing what all the jargon means when you start visiting the Doctors doesn't help. I think it's best to read up and learn, and thus be able to understand and make decisions when it's necessary.
I was immediately told by my surgeon that 1 out of 8 women get BC, but it didn't make me feel any better.
Have a good weekend, Mary
0 -
Hi Susie and Mary,
Statistics are so unreliable. Particularly when these are manipulated into averages. My cancer leaves me with a 50-50 chance of survival. If the chemotherapy works, then my chances could rise to about 72%. Metaplastic B C is notoriously resistant to chemotherapy though. All the appalling side effects might be for nothing. There is someone on another thread who has survived without chemotherapy - she had suffered from an allergic reaction to the drugs.
A 20% non-survival rate is fairly high. Add this to the short term and long term side effects of treatment and breast cancer is a fairly worrying condition. Nonetheless, we do have to get on with it and worrying about the cancer itself long after diagnosis is pointless, though difficult to avoid. I worry far more about the safety and side effects of treatment.
Susie, I do agree that the Press gives far too much publicity to younger more well known women who don't survive breast cancer. It's very negative and harmful to those recently diagnosed or undergoing chemotherapy. The fact is, most women do survive, some are young and well known, perhaps the Press should be more responsible and balanced in its approach.
Mary, you've grasped the scandal of PFIs pretty well. Hospital Trusts can't afford to service the debt and the Government doesn't care. My hospital is in special measures as almost every department is unsafe. Despite my reaction to Paxlitaxel, I haven't been given an appointment to see my Oncologist. and my request for a lower dose hasn't been confirmed. I'll have another go at sorting this out on Wednesday when my PICC line is flushed.
I was relieved to hear that the weather is reasonable in your neck of the woods. Norfolk is snow free so far, but our daughter lives further South in Hampshire and she's had seven inches of snow overnight. Our Grandson (aged 3) built a snowman and immediately fell in love with it. Dread to think how he'll cope when it begins to melt.
Thank you for lighting a candle for me. I always light one for all of my friends on the thread too. When I haven't been able to go to Mass, Michael lights the candles insead - I give him a list! It's amazing that we all have such a close bond and care so much about one another when we've never met. Cancer certainly concentrates the mind on what's really Important in life.
Enjoy the rest of the weekend both of you.
Love,
Gill X
0 -
Hello Sylvia,
I'll order the book from our Library. I think some doctors are more in need of it than patients. The phrase 'if you think you are being bullied you are being bullied' chimes particularly well with the attitude I encountered here when asking for further treatment following surgery. I've always been able to stand up to bullies, but some patients are just too tired/ill/timid/unsure to fight them.Why should they need to?
I think the best advice I could give anyone with a cancer diagnosis would be, find some reliable sources and do your research. The idea that doctors might try to pull the wool over your eyes may be difficult to accept, but it happens. Check everything you are told.
This thread is a particularly useful source of information mainly due to the research you provide. The experience of other posters is important too, there really is a post code lottery at work in the NHS. We all contribute to the NHS, but many patients outside London and the Home Counties are receiving a sub-standard service. I guess that patients in the USA and Australia find that their treatment varies according to which insurance they have. So difficult to accept when it's cancer you're dealing with.
Thank you for the information regarding Zoledronic Acid. A friend took it in tablet form after a diagnosis of osteoporosis following a broken wrist. Her jaw became painful and she lost several teeth. I do wonder if osteoporosis is being over diagnosed.
I hope that you and Raymond are feeling better than you did earlier in the week.
Love,
Gill X
0
