Calling all triple negative breast cancer patients in the UK
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Hi Helenlouise
I read your post and want to send congrats that you are feeling better and more positive about your situation, it's been a long road for you.
I am also alarmed by the Virus news in your country. I have plans for a trip to New Zealand in late December and our return trip home is supposed to start from Sydney. I wonder what will happen with these plans! We still have a few months to cancel the trip and be refunded.
We are also in Covid craziness again, my State is apparently one of the least vaccinated States so we have more break-outs of cases in many areas. It is so tiring to hear nothing but bad news and one never knows what to believe.
I am really looking forward to coming to near your part of the world, I hope it happens!
Love, Mary
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Pup
Pup found a shady spot!
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Hello Mary,
It was good to see you back on the thread.
I was sorry to read that you have hurt your shoulder again and I do hope that you have not hurt it badly. Have you seen a doctor about it? What have you been doing to strengthen your weak arm? Who suggested that you should do something about it? If you were not in pain with it what was the problem? I do hope you get some relief but it seems that, as we get older, everything takes longer to heal.
As for the thread, first and foremost, I started it to bring breast cancer patients, especially in the UK, out of the dark ages that I thought it was in. There is so much more information now and I do wonder whether some people prefer not to be informed. I shall never forget how my breast cancer consultant was surprised when I arrived at my second appointment already armed with a load of questions that I had sent to her in writing in advance of that appointment. She said, in her experience, most patients just wanted to go through the treatment and get it finished. I told her that was not my way. I had just read, cover to cover, the cancer book newly published at that time, by Dr Rosy Daniels. I think it was called the Cancer Directory.
I think in general, under the NHS, especially GPs, do not want to be questioned.
It looks as though you may be overdoing things. I know that you do a lot of hard physical work.
I think we are all fed up with Covid. Politicians have made a mess of it, keep changing their minds and do not really know what they are doing. These vaccines were made up in such a hurry and now one wonders just how effective they are. We are already getting the scaremongering to get us into early flu vaccinations and more coronavirus ones. On July 19th we have the foolishly called Freedom Day.
It seems that whatever politicians are in control, they all live the high life and we, the ordinary people suffer. In the UK I do not trust any of the parties any more and as for Biden I think he is too old for the job and too creepy. There is no life in him. As for Johnson here I think he is a disaster and that he needs to get a good haircut and tidy his clothes up. He looks a scruffy disaster in Parliament, is rude and ill-mannered, a dreadful speaker and the Speaker of the Commons never rebukes him or sends him out of Parliament. He would not get away with this with John Bercow, the previous Speaker. I doubt whether I shall ever vote again.
It is far too hot here today and we are probably going into a drought after loads and loads of rain.
Thank you for sending the photograph of your puppy.
Try to take it easy and spoil yourself a bit.
Love and best wishes.
Sylvia xxxx
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hi Sylvia
The most annoying thing about my shoulder injury is that it was my idea to return to the Therapist to learn how to strengthen my arm/shoulder without hurting myself! Lo and behold, after the first session I was hurting badly. I'm hoping it will get better, I have not seen the doctor and will give it a chance to get better first. No more surgery, I hope.
I agree, Biden is creepy, and is such a puppet. Every day he is shoved to the podium to read his script, which usually involves needing just a few more Trillions of $ for more climate-engineering and wrecking of the Economy. Most of us are quite cynical by now, hard to believe such wasteful spending can ever be stopped.
Boris is a scruffy-looking man, as if he just got out of bed, put on yesterday's clothes and ran out the door. I hear he is going to open up the UK, Covid-wise. I hope all goes well with that.
I need to get ready for Church now, I am going to try writing short posts and more of them till arm is (hopefully) better.
Greetings to Raymond, glad he is home safe instead of in hospital.
Love, Mary
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Hello Sylvia,
Freedom day! What a disaster, our NHS beds have been filling up with Covid patients for the last few weeks and operations are once again being cancelled. How on earth will ending restrictions help? Johnson's already wrecked the economy and the NHS and cost thousands of people their lives. How much more are we expected to tolerate? Michael's just looked up from his newspaper to let me know that the UK's Covid infection rate is once again world-beating.
Jonathan Ashworth, shadow Health Secretary is excellent. Quietly spoken, but knows exactly what's happening in our hospitals and what ending restrictions will mean. Neither Mathew Hancock or Sajid Javid have done well against him in debates. If only he could have been in charge. There would certainly be many more people still alive today. So many needless deaths.
I do think that many of the world's serious health issues are due to living far too close to animals, wildlife in general and to each other. Nature will always fight back. Many scientists have predicted that there is likely to be another pandemic not too long after this one. It seems that there's unlikely to be a hundred year respite this time.
My GP has just phoned, I don't need another blood test and my blood pressure is very good. Just as I thought. However, she hasn't been able to access my pre zoledronic acid infusion blood test result as the hospital IT system is different to that at the surgery. Paperless systems working well then! As for the breast clinic, unless I notice changes, I'll have to wait for an appointment.
You are probably right about the thread having served it's purpose. We rarely have comments from new people and there are very few, if any changes in the treatment of TNBC. I'll leave you to decide whether to give it a rest or wind it up and go along with whatever you decide. We are both very short of time. Even so, I would miss it.
Best wishes to you and Raymond. I've noticed that Exmouth is seeing a rush of tourists, so keep safe.
Love,
Gill xxx
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hi Gill
I'm glad to read you have gotten favorable medical reports from your sources, it does seem difficult for you to get heard by anyone in a timely fashion. The other day I heard a commentator comparing Canadian medical services to US, I was surprised at the wait times to be seen in Canada. As much as we complain here about our services, it really is easier here to get responses and services. Although I must say if our pols keep messing with things that won't be so in future.
I don't know if you saw my latest posts, I hurt my shoulder again, I think its some better but I haven't stressed it much since, I was told to rest it. I have been in a bit of a funk, its so hard to live alone and watch things be neglected because there is noone else to take care of things. Since my husband died the loneliness has crept in more and more, travel was my big entertainment but that is not easy right now, with Covid popping up unpredictably. I have noticed too that with the coming of Covid friends are pulling inward closer with family, I feel quite outside of things. Thank goodness for my dog, at least I can manage to take care of him and he makes me smile.
Im sorry to put all that on you. I went to Mass yesterday and thanked God for what I do have, which includes 2 arms and 2 creaky legs, a body in between and a spirit that needs some pumping up.
I hope that Michael is doing well now. It sounds as tho he has A-Fib? Which pops up from time to time, I assume. I hope he is not bothered with it any further. Did he find out what was up with scalp lesion?
Talk to you later,
Love, Mary
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Hello Mary,
Many thanks for your latest post.
I think you are doing the right thing to give your shoulder a chance to heal before seeing the doctor and I think you are right to decide against any more surgery.
I think you probably have already picked up on the fact that I am very disillusioned with all politicians whatever party they belong to. They live very privileged lives and are in politics for themselves and their own egos and are not really interested in ordinary people. Right now I feel that we have had a dumbing down right through society.
I think I have grown very tired of all the talk about Covid and I do not think our government knows what it is doing. Today is supposed to be "freedom day" whatever that means. Everything was supposed to be irreversible but there is already talk of restrictions at the end of September, by that time it will be too late. Talk today has been all about opening up nightclubs as if that is a great priority.
Raymond and I will continue as we have done ever-since this all started back in March 2020 but the virus was really around in November 2019. Remember it has always ben called Covid-19. We shall continue to wear masks in shops etc., avoid crowds and stay mainly in our own apartment, by ourselves, and walk when we can. At the moment we are having a very debilitating heat wave and we both feel exhausted, even too exhausted to read. There is a heat warning for the next few days.
I do hope you manage to stay with us and just write whatever you can. I have noticed on the other threads on the TNBC forum that posts are very short indeed.
Are you reading anything interesting at the moment? Have you read any books lately about breast cancer? I am concentrating on two particular authors at the moment and reading novels for some relaxation. I am reading a novel by a famous modern French author, Michel Houellebecq, in French, entitled Soumission (in English Submission). His books are available in English and I think widely available.
The other book I am reading is by a Spanish author, very famous and considered one of the best in the world. His name is Carlos Ruiz Zafon. The title in English is The Shadow of the Wind. It is part of a series but can be read separately. I am reading it both in Spanish and English. Today I have felt too hot and tired to read anything.
I do hope things settle down in both of our countries but I am not optimistic. We have so many problems here and such an archaic, unequal and unfair country.
Take care, Mary, and keep in touch.
Love
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. Of course I agree with what you say about Johnson. Raymond and I watched the latest briefing on BBC1. We did not think much of it and we did not think questions were answered very well. The questions are too long and the responses to them too long and meandering and not really to the point..
I agree about Jonathan Ashworth. He does know what he I talking about but I do not think he presents well on television. There is no one that I can see on the Labour benches that can sock it to Johnson and wake up the public to his tricks.
It seems unbelievable that the IT system is different to that at the surgery, but everything seems to be disconnected. When Raymond went to the hospital to get his pacemaker checked, he was told that a report would be sent to his GP. Raymond immediately said that he wanted a copy sent to him and he got the reply that it was a technical report and as a patient he would not get a copy! We found that insulting and we shall be requesting one.
Raymond is anxious to tell you that, when he was in both hospitals last year, he was flabbergasted to discover that they were both running on Windows 7!!
Perhaps the thread will come alive more when everyone is less concentrated on the coronavirus. We do have to remember that bc.org is an American forum and that many Brits may not be participating. I find this forum very interesting and it is useful to compare the two systems. The American insurance based health system and the British tax-based system. I think our own system has been spoilt by overpopulation in the country and often use and abuse because it is described as "free", which, of course, it is not. It is free at the point of use. I think people have no idea how much their treatment costs and I feel very strongly about patients who keep filling prescriptions because they seem them as free, and are not even taking the medication.
That is about all for now.
Love and best wishes to you and Michael.
Sylvia xxxx
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Hi Mary,
What bad news about your shoulder. It seems that you have no choice but to rest it and put all the chores that are building up on hold. Very stressful and frustrating though. You definitely don't want to go through surgery again as the outcome of shoulder surgery is by no means guaranteed. I hope you'll be able to buy in some help once Covid has died down to a more manageable state.
I doubt that my breast surgeon will be able to fit me in for a scan until my annual check up is due in late September - assuming checks ups are still happening. The way the pandemic has been handled has crippled the NHS and it's difficult to see how it will recover. If the lump was local, along the scar line or in the lymph nodes I would have paid for a consultation and surgery independently.
I think people may have limited themselves to seeing close family as they perceive that as less risky at the moment. We're still seeing friends, but outside only. Thank heavens you have a dog for company. As for Mass, the Cathedral ended social distancing and the need for masks and hand sanitizer last Monday. This will force many of us back to virtual Mass again, especially given the average age of the congregation. Who knows how all this will end?
Take care Mary.
Love,
Gill xxx
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Hello Sylvia,
I think debating in Parliament has resorted to playground tactics. Name calling, jeering and blatant lying. Labour MPs cannot call the Tories out unless they start punching below the belt I'm afraid. The Speaker needs to go, he's the worst Speaker in my lifetime. Milliband has changed for the better and has proved capable of silencing Johnson and the jeering within seconds. I really think he should be given another chance as leader. As you often say, we need to move Parliament into the twenty-first century, starting with the building itself.
The pandemic might well be the reason why we have so few posters. It would be interesting to know how health services in other countries are dealing with Covid and cancer. How many women have had to wait for a a breast cancer diagnosis and treatment beyond the norm? Had their cancer moved to a different stage during the extended waiting time? Are recurrences being put on the back burner? I know that Canada's healthcare system isn't coping well and the NHS certainly isn't.
Raymond should be given any information he asks for. It's his data - technical or not. We should all have access to anything recorded about us.
Like you, I get very angry with people who abuse the NHS. Not turning up for hospital or GP appointments, not taking medication but keep filling prescriptions, arriving at A&E drunk or with minor ailments, abusing their health for years and then expecting the NHS to put it right at enormous cost. The list is endless. I'm particularly unimpressed by those who participate in extreme sports and expect the rest of us to pay when the inevitable happens.
Have to stop now as the chimney sweep is due in a few minutes.
Wishing you both a peaceful week.
Love,
Gill xxx
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Hello Gill,
I do agree about parliament. It is a complete waste of time and is embarrassing. The Speaker is absolutely useless. They call this democracy! I think we probably need to get rid of both main parties and start new ones in a modern, functional building with no useless ceremonials.
I do think the pandemic has taken over people's lives and I cannot see an end to it. The latest figure I have for waiting lists is thirteen million.
It is hard to know what to say about different health services. I do know that during the time Raymond and I lived in Canada (1977 to 1993) the state health service was excellent but in know that it is not working now. I think the reason it was working at that time was because of the very low population and the respect Canadians had for that service. I do believe that a low population does help with quality of life. Here in the UK, as I have said before, people take our health system for granted. I think it was doomed by the careless use of the word "free".
As you say, it would be interesting to hear from other people in different countries about how they rate their own health services. Do you think Americans prefer their insurance-based system?
The heatwave continues here in Devon but it does not stop people burning themselves on the beach. We have two weather warning here now, one about the sun and one about rain.
That is about all for today. Take care and keep well.
Love.
Sylvia xxxx
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Hello Sylvia,
Very dull day here, quite a relief really. Rain is expected over the weekend and most of next week, just in time for the school holidays. Poor parents.
I often read other threads and it seems that feelings regarding the American insurance based health system are mixed. I think what it boils down to is that those who are able to afford good quality insurance cover are generally satisfied, while those who have more limited resources certainly are not. As a firm believer in equality of access to healthcare, I'm totally opposed to the privatisation of the NHS. However, the process is well underway via the back door. Virgin Care has already taken over many millions of pounds worth of NHS contacts over the past few years, despite strong opposition. Our NHS is up for sale!
Yesterday Dawn Butler MP called the Prime Minister out for his habitual lying to Parliament. She was slung out by the Deputy Speaker. Telling lies is now acceptable, challenging liars isn't. Meanwhile Covid infections are rising dangerously and the numbers of daily vaccinations is falling. Hospitals will be overwhelmed again and waiting lists for life threatening illnesses will grow even longer. I'm more worried now than during previous waves of Covid. It's beginning to look as though England is in the middle of a very dangerous experiment. Abandoning the science to some half-baked theory about herd immunity will cost us dearly in the end.
Cancer treatment seems to be a long way down the Government's list of priorities. I'm hearing alarming reports from people complaining about poor care in private hospitals too. Paying may not be the answer.
On that cheerful note I'll be off.
Enjoy your weekend - perhaps not reading the papers or listening to the news would help!
Keep safe both of you and ,of course, all our posters.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post on July 23rd.
I do agree with what you say about insurance based health systems.
I do not feel very optimistic about the future of our NHS.
I think the main problem is overpopulation and too many people to treat. I also think there is too much bureaucracy and everything is too disconnected. Another problem is lack of responsibility of the individual to take responsibility for their personal health. I cannot see how the NHS will ever get through the number of people on waiting lists. I think a lot of people who can afford it are going private in order to get off the waiting list and now even the private sector is having problems. I watched a news programme yesterday evening which was talking about dementia and the waiting lists to get diagnosed. I think it was about 50,000 people waiting for a diagnosis.
I do not think Dawn Butler should have been suspended for the day. There were many times when Johnson should have been thrown out of parliament but of course that never happens. All the Speakers are hopeless. The best one ever from my point of view was John Bercow.
As you say, cancer patients are not getting a fair deal and I would like to know what the death rates are.
I am really fed up with all the mess over Covid-19 and the mess the government has made of it all.
It has been a difficult week here dealing with things in our complex.
It is disappointing that our thread is not improving with posts, but then again there is not much that is new with TNBC.
I do hope you and Michael will have a good week. Take care of yourselves.
Love.
Sylvia xxxx
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Hello Sylvia,
It's very difficult keeping the thread relevant when we have no new posters.
I have no real idea how much Covid has slowed down breast cancer surgery or treatment. I think that in Norwich at least, actually getting a diagnosis might be a problem. How a GP, not at my practice, but one close to me, can in all conscience diagnose and dismiss a 51 year old woman's lump in the breast and another under her arm as cysts is beyond me. All breast lumps should be referred as a matter of course. My daughter always refers even when she strongly suspects a lump is harmless. If women aren't being diagnosed then we must expect an explosion of advanced breast cancer before too long.
I've been reading through some of the other threads here and have noticed that patients in America seem to be able to change surgeons and hospitals much more easily than in England. Again, I think it depends on the type of insurance cover patients have. It seems to me though, that it's entirely possible that where money is involved, medics may order unnecessary tests and treatments just to cash in. Being overtreated would have a significant impact on quality of life.
I don't know what's happening with Covid now. The infection rate is falling, but so is testing. Many people have deleted the track and trace app as it's so disruptive. All key workers appear to have been told to switch it off. We shall have to see what the consequences will be, but hospitals are struggling already and more young people are being admitted. As you say, people need to take more responsibility for their health - attending crowded music and sporting events en mass just isn't sensible. I wonder if Parliament will be recalled if there's a sudden surge of serious cases or a more dangerous variant starts spreading in the UK? Probably not.
There's going to be a lot of rain coming our way and thunder storms are expected this afternoon.
Hope the problems at the complex have been resolved so that you and Raymond are able to have some time to yourselves.
Love,
Gill xxx
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Hello Gill,
Many thanks for your latest post.
I do agree that it is difficult to keep the thread relevant when we have no new posters. I also think that since the forum seems to be mainly American posters, that the thread is becoming more and more irrelevant. We have a completely different medical system that is state owned and not based on private insurance, not yet! I have always felt that in the American system there is perhaps over treatment and too much complex information. I also think that there is too much emphasis on TNBC being aggressive and I am sure it must be frightening to newly diagnosed patients. The great push seems to be getting TNBC patients on more and more drugs, like hormonal breast cancer patients. I have always been positive about being free of drugs after the standard treatment. I shall monitor our thread until September 12th when it will be eleven years since I started the thread and I shall then stop posting if nothing is happening.
I shall be happy to remain friends with you, if you want, and I shall give you my email address.
I do agree with you that, where money is involved, with any kind of medical treatment, one can wonder about over treatment for profit.
I do not know what to think about Covid. I think there is a lot of manipulation of facts and figures to satisfy the political whim of our government. I take them all with a pinch of salt.
It is very difficult for Raymond and me to get time to ourselves but we are hoping for some this weekend.
We have new people moving in and it looks as though solicitors are not really going through our lease etc. before people complete to buy.
I am still looking out for my cousin in London and it is very difficult dealing with Social Care. There has been a change of team from the hospital to home team to adult social care. It all seem strangled by bureaucracy. It is even more difficult because my cousin has been formally diagnosed with cognitive impairment and has bad memory problems.
I hope you and Michael are not getting too frustrated with your problems.
Love.
Sylvia xxxx
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Hello Sylvia, Gill, Mary, Kath and everyone else.
I am alive and surviving - life has been very busy and still is with much going on with my health issues and within our family. I really don't know where to start - so I will ramble. Recovery from my heart surgery is very good - however, May 13th I had a stroke which was terrifying. That was 5 months post surgery - happened in my back garden - we had to call 911 - rush to emergency and get immediate CT scan of brain. I lost use of the left side of my body and my speech was very slurred - classic stroke signs. Absolutely nothing showed on the CT scan - no hemorrhage, no clot. I had an echo to see if there was a clot in the heart left over from surgery - but it was also good. All blood work was fine. Mysterious. The good news is that I regained function within a few hours - but they kept me in hooked up to a number of monitors, IV, complete bed rest. My speech became normal quite quickly also. I was released the next day with a blood thinner called Eliquis (Apixaban) . It is a newish blood thinner which apparently is replacing warfarin - I have to be on it for 3 months. They told me it was a mini stroke or TIA where a small blood clot does transient damage. I am fine now and back to my daily long walks - but I get periodic headaches and feel fatigue which my neurologist assures is quite usual after traumatic brain injury.
Not surprising, this incident caused my husband a lot of anxiety and our children are naturally worried about me. It has really shaken me up but I am fine - but it makes me realize even more just how so, so fragile life is - and I remind myself daily to be grateful for each day and embrace it and while I am alive, I will LIVE.
We are surviving the heat waves quite well simply because we have a basement which is much cooler than the rest of the house and luckily for us, we have a guest bedroom and bathroom down there which is a real blessing. Our main bedroom which is on the 2nd floor of the house is generally between 30 and 40 degrees - and we have no air conditioning. Today outside is around 34 degrees. Too hot, but my tomatoes love it and are growing very well. We have had 47 days without rain and we really need it.
Covid fatigue, conflict and confusion is rampant here and many people are suffering with mental health issues - our government changes its mind every few days regarding mandates, protocols etc. We simply keep ourselves removed from crowded spaces, and spend most of our time in our big back yard.
Our family is growing - a new baby is due any day now and luckily for us our daughter has always been in our bubble so we see her and our granddaughter regularly. Our first covid baby Leo is 9 months old now and on his feet - adoreable. Our other son and his family from Quebec came for a week at the end of June - they did not stay with us, but we had many family gatherings while they were here since it was 18 months since we had seen them. Our other daughter in Toronto has also announced that she is having a baby in December - so this is exciting news for all of us. So in spite of co-vid - babies are still being born and families are carrying on.
So nice to read (albeit skimming) and catch up with the few who post on here - today was the first day I have felt inclined to look at the forum and I am glad I did - I take this as a sign that I am feeling a bit better.
Wishing everyone a safe summer and look after yourselves,
Love,
Adagio
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Hello adagio,
I was so pleased this morning to discover that you had posted. Raymond opened up the laptop early this morning and then came and told me in the kitchen that you had posted. We have both had you in our minds a lot and have been wondering how you were getting on, especially after your surgery.
We were shocked to read that you had had a stroke on May 13th and had had to get to hospital. It is very strange that nothing showed up on the CT scan, the echo and blood work. The two symptoms you had of losing the use of the left side of your body and slurred speech are classic signs of a full blown stroke. We always keep ourselves aware of what to do in the case of a possible stroke by FAST (face, arm, slurred, time to call an ambulance). We were so glad to read that you regained function within a few hours and that your speech became normal quite quickly and that you were released from hospital the next day.
We were not surprised to read that you have been given the anticoagulant, brand name Eliquis, generic apixaban, because it is very familiar to us and is very much in vogue here now as a replacement to warfarin. My cousin in London is on it and it has to be taken twice a day with a twelve hour interval between the first and second tablets. He is on it permanently so far and has to carry a card about it.
At least you have been told that it was a mini stroke or TIA. We were so glad to read that you are now feeling fine and are back to taking long walks. We hope the headaches will go in time.
We can understand the anxiety felt by your husband and children. I can understand that, because I must admit that I am never free of anxiety since everything that happened to Raymond after he left home for a trip to Exeter. I am very anxious when he goes out alone. He has done very well since the triple bypass surgery but still has trouble with his leg and gets very tired. As you say, life is fragile and you never know what is going to happen to you from one day to the next. You have to live each day to the full and never take anything for granted. I tend to worry a lot and am trying to relax more. It is not easy as I have strong feelings about everything and I do not like the way the UK is going. I despair of the social injustice and inequality in this country and I do not like the non-stop boasting and arrogance of what a great country we are.
I am going to stop now and post this part and then begin again in a while.
Lots of love from Sylvia and Raymond xxxx.
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Hello again adagio,
I picked up straight-away on the news about the heatwave in Canada on the west coast and thought about you. I have an old school friend who lives in Saskatchewan (Saskatoon) and I was wondering about him. I do not know how we would have survived in such heat in Canada. We do remember how much we liked the basements in Canadian houses. It was so cool in them. Like you we often slept in the basement. Luckily there was always ait conditioning in the homes we had. It has been hot in the UK, up to about 40 in certain places but in Exmouth it has been about 31. We have found even that debilitating for us and got very tired. Fortunately it is a lot cooler now. We have had a lot of rain together with the heat and very strong winds.
I think we have the same situation here with Covid. I think everybody is tired and fed-up, not to mention confused. The government is forever changing its mind. We have kept ourselves alone and worn masks when going into shops etc., and we shall continue to do so. We have not done well, on the whole, dealing with the virus and most of the cases now are the Indian variant (delta) which ss very contagious. We have had our two doses of the AstraZeneca vaccination but still believe we could get the virus. The third dose will probably start being given to the 60+ in September, along with the flu vaccine. We do wonder what it is doing to our bodies but feel we had better have what they are calling a booster shot. On the whole Raymond and I feel that everything has been politicised and we are sceptical about the numbers we are regularly given about track and trace and deaths.
I am sure it must have been very good for you to have one daughter in a bubble so that you could see her and your granddaughter regularly. Perhaps you could post some photographs so we could see your family. We all need cheering up in these difficult times.
You must have been very glad to see your son and his family from Quebec and to have some family gatherings.
You must be looking forward to the birth of another grandchild.
I was glad to know that you have been able to catch up a bit with the posts.
We are a small group of regular posters mainly Gill, Mary, Kath, Helenlouise and I. Others pop in from time to time. I can say that the posts are always quality ones. I do hope you will be able to stay with us even if you just post a line or two.
Wishing you and your family all the very best. Keep well and keep safe. Remember to keep looking forward and enjoying every day to the full.
Love.
Sylvia xxxx
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Hello Gill,
I have just been looking at the other threads on the TNBC forum.
There seems to be a lot of excitement about the drug, pembrolizumab (brand name Keytruda). Apparently it has just been approved by the FDA for treatment in TNBC. I have not read all the details so far, but I would not think it has been approved for use for this in the UK. I am familiar with this drug as a friend of mine was having it some years ago for melanoma skin cancer. I think they had tried a lot of drugs on her and this was probably a last resort. It is an immunotherapy drug and is used as well for lung cancer and other cancers.
It is something we need to have a look at. The moderators have posted details about it. As you know, I am not keen on all these drugs and it looks as though this will be an additional drug to take during and after chemotherapy.
You will be pleased to see that adagio has posted.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia,
I was delighted to see adagio's post this morning. Having a TIA must have been a terrifying experience, after all she had all the symptoms of a full blown stroke at the time. Very pleased that her recovery was so quick and that she'll only need blood thinning medication for a few months.
I've just visited the NICE website to learn more about the use of Keytruda. I knew that it was already being used for colorectal cancer, but not TNBC. It seems that NICE is still mulling over the benefits of Keytruda in locally advanced (not metastatic) breast cancer and will make a final decision in September. It's likely to get the green light as it will probably save money in the longer term. We'll have to keep an eye on this one. I do wish that scientists would come up with a cancer drug that could be used instead of chemotherapy, rather than alongside it.
I couldn't agree more about the frightening description of TNBC as 'more aggresive' than hormone receptor + cancer. Firstly, it responds extremely well to chemotherapy, secondly, there are no unpleasant and sometimes debilitating meds to take for years after surgery and chemotherapy and finally once patients have been clear for five years, triple negative cancer rarely returns - though there are no guarantees of that and there are certainly cases of it reappearing many years downstream, but this isn't the norm.
It's very frustrating that you're still having to deal with so much bureaucracy on behalf of your cousin. I can't help wondering how much all this unnecessary box-ticking is costing. If only these departments were left to get on with it instead of constantly needing to deal with interference from Central Government - which has no intention of funding social care properly although this was promised by Johnson during his election campaign and many times since. One thing is certain, your cousin wouldn't have stood a chance of receiving the care he clearly needed had you not intervened on his behalf.
I think you're right about monitoring the thread until September 12th. I appears that so few people in the UK know about this website, let alone this thread, which is a great shame as the information here is invaluable, very down to earth and generally very reliable. Also, the moderators are excellent in keeping us informed about new developments and organising talks.
Conveyancing solicitors often miss relevant information. It makes me wonder if they ever actually take the time to read through documents properly. They should be going through them with a fine tooth comb, we pay them enough. Our solicitor missed the fact that although we had a right of way along the farm track that leads to the cottage, we didn't have right of way to join the track from the top of our drive, where the access point had been moved by the previous owner. We sorted it out as the owner of the track was very understanding, but it could have ended quite differently.
Try to have a peaceful weekend this time!
Take care both of you.
Love,
Gill xxx
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Hello adagio,
How lovely to hear from you and know how you and your family are getting on.
What a roller coaster ride you've been on this year! It hasn't dented you're determination to live life to the full at all, which is always good to hear. Your heart surgery seems to have been very successful and well worth your taking a leap of faith to put yourself in the hands of the medics. I fully realise how difficult that decision was for you and I know that Sylvia, myself and others here were keeping you in our thoughts during that long surgery.
Being hit so suddenly by a TIA would have been a very frightening experience. It must have seemed like a major stroke at the time. I can only imagine what was going through your head. Thank heavens the hospital staff were able to do tests and explain what had happened quickly. It seems that Canada's health system has that in common with our NHS, long waiting lists, nowhere near enough staff, beds or equipment, but good in an emergency. I know several people, two are relatively young, who have suffered TIAs and none have gone on to have a major stroke. You keep yourself very fit with all that regular walking so let's hope that this was your first and last TIA.
Congratulations on your growing family. Despite the very difficult times we're living through, life goes on and young families seem undeterred by the chaos that Covid has brought. Our Government blunders from one health crisis to another. Very few of us know what Covid rules are any more. In some stores masks are mandated while in others they're entirely your choice, but advisable! It's been chaotic in England all through the pandemic and I doubt if that's about to change. Hospital waiting lists are growing and cancer treatment has slowed right down. Not a good time to be ill.
As for the weather here, I think we must have been sent all your rain by mistake. It's been raining most days in Norfolk and we really haven't had any Summer to speak of. We're off to the Midlands to look after our two grandchildren next week. The weather forecast is grim. Cold and rainy with the sun appearing from behind heavy cloud from time to time. Raincoats and Wellingtons all round as both children (aged 3 and 5) are extremely energetic, so staying indoors is simply not an option. Looking forward to it though, whatever the weather.
Stay safe and well and keep on living life to the full.
With love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
As you say, it was so good to have adagio back with us again. As you say, it must have been a terrifying experience for her as the symptoms sounded more like a full blown stroke, rather than a TIA. It is really good that she has to take the blood thinning medication for just a few months.
I was interested in what you had to say about the NICE website and the use of the drug Keytruda that I had known as pembrolizumab. It belongs to the group of drugs known as monoclonal antibodies and has been in use for some time for different sorts of cancer but now breast cancer. It will be interesting to see what NICE decides in September. If it will save money they probably will decide to approve of its use for TNBC. I do worry about patients taking more and more drugs, especially chemotherapy drugs because they take such a toll on the body. There are immediate and long-term side effects. The chemotherapy drugs started off with things such as doxorubicin, epirubicin and cyclophosphomide. When I was going through treatment the taxane drugs were being added for breast cancer, docetaxel and paclitaxel. These two have proven to have nasty side effects such as neuropathy and, I believe, lymphoedema. Now some patients have the platin drugs and now it looks like drugs such as pembrolizumab. It would be good, as you say, if the scientists would come up with cancer drugs that are alternatives to chemotherapy.
My friend and neighbour who was on pembrolizumab for melanoma was quite unwell on it.
This is what I found in my book about monoclonal antibodies. "Antibodies are a fundamental building block of the immune system. They recognise and bind very specifically tio foreign proteins on the surface of bacteria, viruses, and parasites, marking them out for destruction by other parts of the immune system. Monoclonal antibodies are produced in tissue culture using cells genetically engineered to make antibodies against a particular target protein. If the target is carefully selected, the antibodies can be used to identify cancer cells for destruction. If the target is found only on cancer cells, or on the cancer cells and the normal tissue from which it arose, the damage to healthy tissues during treatment is limited.
"Monoclonal antibodies are being used increasingly in cancer treatments. Examples include trastuzumab (Herceptin) which bonds to a protein produced by certain types of breast cancer, and alemtuzumab and rituximab, which recognise different types of proteins on white blood cells and are used to treat leukaemias and lymphomas.
"These antibodies are very specific for certain types of cancer, and they cause little of the toxicity of conventional chemotherapy. They can, however, cause allergy-type reactions, especially at the beginning of treatment."
As you say, we shall have to keep an eye on all of this.
I think we both agree that all this scaremongering about how aggressive TNBC is should stop. Hormonal breast cancer is no picnic and treatment goes on for years. A friend of mine has been dealing with it for about twenty years. She started with it in about 2001, went through all the post treatment drugs and then about five uears ago it spread to the bones. She has been on and off chemotherapy and radiotherapy. She often has oral chemotherapy drugs from which she has regular rests. She takes it all in her stride, does walking, jogging, cycling and eats healthily. It has been a long journey for her.
I do not know where this country is going with adult social care, but it needs to be simplified.
I do agree that bc.org is a very good forum and I am proud of our thread. It has lots of information and quality posts but I think Brits in general are probably on threads on Facebook. I was asked to join one of these years ago but I declined.
That is about all for today. At least Raymond and I have managed to have some quiet time. We needed it as we have been feeling very tired.
We shall talk again soon. I do hope you have a good break in the Midlands.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I agree with you regarding the toll drugs take on our bodies. They also impact on our quality of life longer term, but we have to decide which is worse, the immediate and sometimes permanent side effects of cancer drugs or the impact of cancer itself. Cancer is the enemy, it's devious and quite capable of reappearing years after a patient has been declared cancer free - I think 'no evidence of disease' is more commonly used today. Whatever the phrase used, neither mean very much in reality. It's difficult to say what I'd have done had I been offered a drug that helped to prevent a recurrence.
I've been researching metaplastic breast cancer again this weekend. It seems that I may have misunderstood my breast surgeon's answer when I asked if I had IDC. Articles I've been reading clearly state that metaplastic breast cancer is rare in comparison to invasive ductal cancer, which suggests that metaplastic cannot be IDC. This hasn't been explained to me properly, either because everything was so rushed during consultations or because the surgeon knew very little about metaplastic. 'Very little is known' was a theme that ran through all discussions with the medical team treating me. Anyway, almost three years after diagnosis, I'm going to ask again when I go for my annual mammogram and check-up, he may be more knowledgeable by now.
I was very interested in your information regarding monoclonal antibodies. I hope others will read it. As for Keytruda, I've been looking at possible side effects, some of them are extremely serious. I'm not at all sure about immunotherapy. A friend had immunotherapy for bladder cancer, he found it very difficult and wasn't too disappointed when he was told that it wasn't working and taken off it. He finds chemotherapy much easier to cope with on its own. Of course, bladder cancer is quite different from breast cancer.
Very dull here again, but not raining yet. Whilst I'm not a fan of hot weather, some sunshine would be good. This Summer has done nothing for our vitamin D levels.
Best wishes to you and Raymond.
Love,
Gill xxx
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Does anyone have advice about travel insurance? Insurewith and Boots are not writing new policies right now, AllClear are quoting me £1500 for annual worldwide cover incl US, StaySure I can't be bothered to deal with an agent who can't spell my name correctly after telling her four times what it was, and Insure&Go didn't pick up the phone.
We are headed to Sweden for a week on Friday and at this point Im ready to just go with normal single trip cover and not declare the breast cancer. Does anyone know what the risk is for that approach? Does it potentially void my entire policy but really all I need is cover in case I get in a car accident. The cancer is under control, MO is practically shoving me out the door to take a vacation, and I will be wearing my compression socks on the plane and bringing extra medication in case we get delayed.
We are going to to the US in September and I get that it another kettle of fish entirely and will deal with that when we get back, even if the cost is high. I just need something now for anything outside of cancer that I cant control. Ive checked the Breastcancernow and Macmillan sites and it seems like an ok strategy.
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Hello SondraF,
It was nice to see you on the thread again. I am sorry but I cannot help you with the insurance query, but I hope someone will post who can help you.
I was glad to read that you are doing alright with your breast cancer.
Keep in touch.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post.
I do agree with what you said about cancer. It is a nasty and devious disease and we never know what it is getting up to inside our bodies. I think I would have had doubts had I been offered a drug that claimed to stop recurrence. As it was not being offered I do not know what I would have done. All I can say is that in my apartment complex I am probably the only person not on any drugs from the GP or the hospital. I believe all of them do a lot of harm.
I do hope you can get an answer about whether metaplastic cannot be IDC. Whatever happens, tell yourself you are surviving. Skimming through some of the threads and the active topics, I seem to remember someone referring to what I think must be metaplastic as 'plastic'!
I see that the thread and the forum in general remains quiet.
We have just had a torrential downpour of rain.
Have you now left for the Midlands?
Take care.
Love.
Sylvia xxxx
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Hello Sylvia,
I think that cancer creates such fear precisely because of its stealth. It attacks silently, long before we notice anything is wrong. Once we've had cancer there's always some dark corner of our minds where the 'what if it comes back' angst lives on. I'm now able to go for days at a time without thinking about cancer at all. I'm used to the mastectomy scars and not being as physically fit as I once was, but I'm always grateful it was cancer I had and not a degenerative condition like motor neurone, Alzheimer's or multiple sclerosis. There's a lot of things far worse than cancer!
The Government is planning to offer everyone over 50 a Covid booster beginning in just four weeks. Apparently we'll all be offered the Pfizer jab, regardless of what we were given previously. I foresee problems in the smaller vaccination hubs where there is no ultra-cold storage available
I was interested to read Beesie's recent post on the 'not diagnosed with recurrence or metastasis but concerned' thread. I hadn't realised that once women have had breast cancer they are more at risk of being diagnosed with another breast cancer at some point in their lives than women who have never had breast cancer at all. Also, according to the NHS site, certain types of lumps, although not cancerous can make a cancer diagnosis more likely later on. I had a suspicious lump removed at the age of 24. Although it was found to be non cancerous, I went on to have decades of fibroadenomas and cysts. Despite taking evening primrose capsules ( very hard on the stomach) and regular checks and ultrasounds, the lumps and cysts were relentless. I wasn't concerned, though perhaps I should have been. Breast surgeons always advised me to stay away from HRT. They were very definite about this. One told me that no matter how unwell I was during the menopause, I must never give in and allow anyone to persuade me to accept hormone replacement. My GP put up a convincing argument all the same.
As I'm off for a few days I might be a bit slow to post for a short while.
Best wishes for a peaceful week.
Love,
Gill xxx
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Hello Sondra,
Sorry I can't be of any help. I would say that from what I've heard, insurance companies are experts at avoiding paying out if there's any reason at all (no matter how minor) not to.
I hope someone else here is able to give you the benefit of their experience.
Enjoy your holiday.
Gill X
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Hello Gill,
I certainly agree with you that there are degenerative conditions that are much worse than cancer. One of my male cousins died very quickly of motor neurone disease and a friend of mine, a lecturer at Exeter University, was diagnosed with motor neurone disease and chose to get on a plane to Switzerland and end his life at the clinic there. In the complex where I live I saw the struggle of an elderly man with MS. Raymond and I used to help him a lot.
I am getting very wary about what the government is planning to get up to with the Covid booster vaccination. I heard yesterday that we were all going to be given the Pfizer vaccine and am not happy about mixing vaccines. I do remember Chris Woollams saying that this should not be done. I also wonder what all these vaccines are doing to a person's body and what will be the long term effects. The plan is to do these vaccines along with the flu shots. I also heard that there is a surplus of the Moderna vaccine that will be out of date in the short term and this will be offered to younger groups.
The name Beesie is familiar to me, so I think she may have posted on our thread in the past. I tried to locate her posts yesterday in the forum Not Diagnosed with Recurrence or Metastases but Concerned. That forum is familiar to me because Sam52 whom I knew well from the thread, started a thread in that forum entitled IDC (Invasive Ductal Carcinoma) and Parathyroid disease. Can you tell me the name of the thread that Beesie posted on recently? It does make sense that if you have had breast cancer once you are more likely to have a recurrence or a new cancer in the other breast. Although we may be told, 'no evidence of disease', by our oncologists, it does not mean that cancer cells may not be lurking dormant somewhere within the body and will end up in the breast or indeed elsewhere. I think this is what stem cells are all about.
As for non-cancerous lumps, like cysts, becoming cancerous, I do not know about this. Reading what you said in your post reminded me that way back in 1977 I felt a lump in my left breast. This was just about six months after Raymond and I went to live in Canada. I saw a GP about it and he referred me to a hospital in Montreal where we were living. It was a cyst but they decided to remove it, which they did under local anaesthetic. I still have the scar. I did read somewhere after the event that cysts and non-cancerous lumps should not be removed. Of course in 2005 I was diagnosed with breast cancer in the right breast. Whether there is a connection I do not know.
It is best not to worry about this and to focus too much on all this. We are alive and well and all we can do is be cautious. Cysts seem to come and go.
I do agree with you about HRT. I definitely think it causes cancer. One of the women living in the complex here was diagnosed with hormonal breast cancer in about 2001 and she said she thought it had been caused by HRT on which she had been for many years. One of my sisters-in-law now aged 81 took HRT for a very long time and a year or so ago was diagnosed with hormonal breast cancer and I think it was inflammatory breast cancer that was probably caused by HRT. It is difficult for me to understand why some women are so unwell during the menopause as I had no problems at all and can barely remember when it started but it was probably at about 55. I wonder whether menopausal problems are caused by a woman's general state of health.
Do not worry if you do not post for a short while. You deserve a break.
You have been such a strong supporter of the thread.
We do need Mary, Kath and HelenLouise to help by paying us a visit on the thread. All three are in countries with coronavirus problems.
Enjoy your break. Keep safe.
Love and best wishes.
Sylvia xxxx
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Hello again Gill,
I forgot to say that, if you want to switch off a bit have a look at the thread Thin Slices of Joy in the forum Life After Breast Cancer and have a listen to the lovely songs posted by MinusTwo of Joan Baez and Bob Dylan. They are great singers of the sixties and I used to have so many records by Joan Baez. I had a difficult day yesterday and I felt so much better for listening to these songs.
Love and best wishes.
Sylvia xxxx
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