Calling all triple negative breast cancer patients in the UK
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Hello Mary,
Thank you for your post. I can understand how you need quiet times in the evening and do not feel up to doing much writing.
Thank you for your congratulations. I must admit that 16 years seems a lifetime ago. Everything is still so vivid in my mind despite the years. I lived quite normally during those treatment years and the years of check ups. I did not take any notice of all the doom and gloom about not being hormonal positive. Back in 2005 no one at the hospital talked about triple negative. As you know, I have always felt positive about being negative and glad that after standard treatment I did not have to take anti-hormonal medication with all its side effects for years.
As for the neuropathy, it is something you learn to live with and most of the time it is not too bad. I do see a podiatrist regularly to check on this and she always tells me that my feet are in good shape and obviously well cared for and that the pulse is excellent. I know that there is no cure for neuropathy and that it was caused by the taxane drugs, so that means docetaxel (Taxotere) or paclitaxel (Taxol). I am not sure whether other drugs for chemotherapy cause it but my oncologist told me straight-away that it was the taxane drugs that had caused it. I suppose patients today could always ask about this and whether there are alternative drugs that do not cause it.
Like you, I do not like the heat. I like fairly cool dry days. Lately we seem to get everything in excess.
I do hope you will try to stay with us because the thread cannot exist without posts.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hello Paula,
Thank you for popping in and I am so sorry to read all that has been happening in your life this year. I do hope the rest of the year will be happier for you.
I was glad to know that you read the posts and that you enjoy hearing about our lives in England. We do have a very incompetent government in place at the moment and I long for them to get kicked out. It is the most dumbed down government that I have known in my lifetime. It is what I call a Tory fiefdom, a government of the rich for the rich. They are very privileged and earn way too much and there are too many politicians. We do not need a parliament of 650 politicians all on expenses, all on high salaries and with no idea how a lot of people live. I am not even going to think about the Lords. It should have been abolished years ago, along with the monarchy and titles.
I do not know where we are going with the coronavirus pandemic. The whole country seems to have gone mad over football matches. If only they had the same interest in what is happening in this country!
Take care of yourself.
Love and best wishes.
Sylvia xxxx
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Hello Gamb,
Thank you for your post and for your kind words. I am so pleased that you have this thread as one of your favourites.
Why not tell us a little about yourself? We are always interested in knowing where people come from, what their lives are like and how they are doing with breast cancer if they are posting for themselves. We often have people posting for other family members or friends etc.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
In my last post I forgot to let you know that I shall be away from the thread until next Saturday. My daughter, son-in-law and grandchildren have rented a cottage by the sea in Sheringham for the week and we'll be driving down every morning to spend the day with them. I haven't seen them since last August. I'm hoping that the Met Office has been overly pessimistic as the forecast looks much cooler than it should be at the end of June.
I absolutely agree that older people are being cut off from health services which increasingly rely on people having computers and smartphones. Not everyone is able to afford to keep up with modern technology. However, the Government has decreed that this is the way forward for delivering healthcare so hospitals and GPs must fall in line. A Government that cared would have spent money on building new hospitals and training more medical staff. The Tories don't care and need our money to provide their cronies with fat contracts. Yet the Tory vote grows stronger by the day and the right wing press is getting away with the lies that keep them in power.
Good luck with your GP telephone appointment both of you. At least you're managing to get routine blood tests, my annual b/t hasn't happened for about five years and my medications now seem to be on endless prescription without any checks on the state of my liver or kidneys. I was told these were essential. I do have have a pre zoledronic acid blood test at the hospital though and this would show any problems. My next infusion is next Saturday and I had my blood test yesterday in a very quiet hospital.
Wishing you both a very peaceful week. Try to save some time just for yourselves.
Love,
Gill xxx
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Hello Gill,
Many thanks for your last post and for letting me know that you wil be away from the threads until next Saturday. I do hope that you have an enjoyable time with your family whom you have not seen for some time. I do hope the weather will be kind to you, as it is very unpredictable now.
I do think that technology is going too far now and making changes with phones, televisions etc. that we do not need on an everyday basis. Just because we can does not mean we should. Do you have a smartphone and/or a smart television?
I do agree with you about wasting money on technology in the NHS when what we need is new hospitals and lots more medical staff. I have filled in two surveys for my GP surgery and made it clear that I think nothing can beat a face to face appointment with your GP. I refuse to see any GP except the one with whom I registered. Raymond has done the same. We have a telephone appointment with her late Tuesday morning and it is for both of us. I am not looking forward to it as I do not think my questions will be answered properly. I shall let you know. As for blood tests, the one I recently had was the first one since 2014. This was Raymond's first one in 18 months. He really has had no proper care from the system since he left hospital.
I do hope all goes well with your next infusion of zoledronic acid and that there are no problems. I think that, if you do not have a full blood test, a given test will concentrate on only certain aspects.
I shall be glad when this week is over, especially Thursday when we have to go to the RD&E to have Raymond's pacemaker tested. I just wish we did not have to go.
I still wonder where this thread is going and how it can be made more useful.
Take care and enjoy your break.
Love and best wishes.
Sylvia xxxx
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Hi Everyone
Hope u are well! It’s been very busy here as per usual! I now have a new granddaughter called Neve Florence and she is beautiful! Her 3 big brothers love her to bits. I’ll post a pic shortly.
New South Wales is currently dealing with a very scary outbreak of the delta strain of Covid and we are up to 106 cases which is huge for Australia as it is the highly infective strain. Contact tracing is immense and all public health units are on high alert and have been assisting Sydney with contact tracing. We will also expect to see more in the coming weeks before it gets better and I think it has a lot to do with the vaccine hesitancy and lack of info being distributed by a very conservative right wing government. The media also have a lot to answer for as well because of the hysteria and hype they keep promoting. My husband and I have had two doses of AZ with no problems and I think a lot of the misinformation about the vaccine needs to be addressed.
The media keep say that people can have asymptomatic carriage after having the vaccine so people think there is no point but that is actually not the case. AZ now has a 95% efficacy rate if dose 2 is given at the 84 day mark and people need to know that. They also need to know that people who have had the vaccine can also develop mild disease and can risk transmission 5% only) but people have to have symptoms to transmit so we should focus on being aware of symptoms and get tested if u have them. There is so much misinformation out there. I will post some hyperlinks to the TGA after.
I completed my NP masters at distinction level so am organising my endorsement to practice at the moment so I’m very excited. Next week is the 5 year anniversary of my op and I’m not quite sure how I feel. Probably a little bit scared and apprehensive but onwards I go.
Stay well everyone
Much love
Kath
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congratulations Kath on your new granddaughter, wonderful news! And on your distinction level graduation! Good work and well done.
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Congratulations Kath on your new grand baby! I love the photos. And congratulations on you NP masters! With distinction as well!
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Hello Kath,
It looks as though many countries are having problems with the Indian/Delta strain of coronavirus. In the UK they are talking about Delta plus and there has also been on the news about getting a third vaccination and having a mixture of AZ and Pfizer. I just do not know where we are going. As you say, the media leaves a lot to be desired and here in the UK we have a lot of people who just do not care and do not wear masks or do social distancing. I do not know what has happened to this country.
Congratulations on your new grandchild and thank you for the photographs.
Congratulations on completing your NP masters with distinction.
Congratulation also on your soon to be five years since you had breast cancer. I understand how you feel, because we can never take anything for granted. I have now completed sixteen years since I was diagnosed on June 20th 2005. I still take nothing for granted because it seems that the cancer can come back any time.
The thread is way too quiet and there seems nothing much new about which to post with reference to TNBC.
I have been following Chris Woollams of Canceractive since 2005 and I noticed in his latest newsletter that he mentioned a well known anti-worm drug for possible treatment of Covid. The name of the drug is ivermectin. do you know anything about it?
Please keep in touch.
Love and best wishes.
Sylvia xxxx
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Hi, Sylvia
I have also heard of Ivermectin being used in testing for treatment of Covid, I was quite surprised because my Dad used this in taking care of his animals on the farm when I was growing up. Worms, I wonder what the connection is to Covid?
I am also glad to not have to take anti-hormonal drugs, they can cause a lot of problems. They have probably saved a lot of lives however.
The Taxane drugs are the main cause of neuropathy in the treatment of cancer, but if a patient is going to take chemo drugs for TNBC, taxanes are apparently necessary. So neuropathy was named in the paperwork as a possible side effect, and some of us get it and some don't. I have also read that changing the protocol to 4 or 6 combo treatments followed by 12 smaller doses of Taxanes cuts down the possibility of getting neuropathy but there are no guarantees in any of this! By giving me all 3 of the chemo drugs together on the first dose, my doctor chose to make neuropathy more probable. That is what my new oncologist was trying to say, without just coming out and saying it. But it's all in the rearview mirror now, and I am still here, so that's that.
I am so impressed by Kath, she is an inspiration. Such achievement!
We were dry and drought-like, now it has been raining intermittently for the last 5 days, very hot and humid. I want to run away!
Let me know how your medical visits turn out, I haven't done a Telephone appointment, I wonder if the doctors like those. I would rather see the doctor face-to-face.
I have a SmartTV, but it's a bit of a waste for me, because my Internet connection is not good strong to stream all the Programming. I got a letter yesterday from my Internet provider and they are boosting the strength of their signal, I am not sure what to do. Of course it will cost more, and I don't know if it's worth it. Living rurally has its' charms, but good Internet connection isn't one of them.
I better close for now, I will be back later!
Greetings to Raymond, take care of yourselves,
Love, Mary
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Hi, Kath
Congratulations on your great achievement, I have such admiration for you. You had your worries and your pains at times, but you kept going and hit your target, bravo!
Also, your grandchildren are so cute, holding the new baby and love the way the boy in the middle is trying to keep his sibling's face turned to the camera! Adorable, all of them!
Thanks for the pics and the glimpse of your world, you look wonderful.
Love, Mary
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Hello adagio,
I have been listening to all the news on the media about the really serious heat wave in British Columbia and Alberta, not to mention the western US.
I do hope you are coping alright and that you continue to make good progress post heart valve surgery. You know that we all think of you and look forward to a visit on the thread from you.
Love and best wishes.
Happy Canada Day for tomorrow, July 1st.
Sylvia xxxx
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Hello Mary,
It was so good to see you back on the thread. I shall reply tomorrow.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I was interested to know that your dad used this in taking care of his animals on the farm. I do not, for the time being, see the connection, but I think the drug companies will try anything, essentially we are guinea-pigs. I know that Ivermectin is an anthelmintic according to my BMA book on drugs and medicines. It says that these kind of drugs are used to eliminate the many types of worm (helminths) that can enter the body and live there as parasites, producing a general weakness in some cases and serious harm in others. The body may be host to many different worms. Most species spend part of their lifecycle in another animal, and the infestation is often passed onto humans in food contaminated with the eggs or larvae. In some cases, such as hookworm, larvae enter the body through the skin. Larvae or adults may attach themselves to the intestinal wall and feed on the bowel contents, others feed off the intestinal blood supply, causing anaemia. Worms can also infest the blood stream or lodg in the muscles or internal organs.
Many people have worms at sometime during their life, especially during childhood, most can be effectively eliminated with anthelmintic drugs.
There is a lot more information on the page I was reading and it lists twelve different kinds of worms and the choice of drugs.
One connection I can see between these worms and the coronavirus is that both come from animals and pass from them into humans.
I shall try to see if Raymond can print this page for me later, as the article goes on to say why these drugs are used, how they work and how they affect you.
More on all this later.
I did see that Ivermectin is used for tropical thread-worm, creeping eruption (cutaneous larva migrans). It says these worms occur mainly in tropical areas and coastal areas of southeastern US as a result of skin contact with larvae from cat and dog faeces. Infestation is usually confined to the skin.
We have to remember that quite a few different drugs have already been tried out on patients. I remember Donald Trump said he was taking one of them. Of course, they currently use steroids a lot on patients.
I think we have learnt from patients going through chemotherapy treatment that they find it easier if they have weekly or two-weekly doses of chemotherapy durgs rather than the every three weeks that was current, at least here in the UK, when I was going through my treatment. I was not at all unwell and the neuropathy and lymphoedema really came after I had finished. I certainly read and I think it was in the book called Let's Talk Lymphoedema that I read it can be caused by all three parts of breast cancer treatment. My oncologist, GP and podiatrist all diagnosed the neuropathy and the oncologist said it was definitely caused by the taxanes. We would need to hear from breast cancer patients who did not have taxanes but still got neuropathy. We know that all the drugs are lethal.
I certainly think that Kath has worked hard and under difficult conditions.
I do hope Gill and her husband are having a restful time this week with their family. They have been having a rough time lately.
The weather here is very changeable and we prefer it cool.
We are now getting echoes from the government about a third coronavirus booster vaccination in September, along with a flu injection. They mentioned having one injection in one arm and one in the other. I do not like the idea of that because I was told after cancer treatment not to have any injections in my right arm because of the lymphoedema. I am not keen on all this poison going into my body and wonder where we are going. It was also mentioned that the third booster vaccination should be a different one to the two previous ones. Raymond and I had AstraZeneca for the first two so I suppose it will be Pfizer for the booster.
There is so much talk about smart televisions. We do not have one and do not really want one. There is so much rubbish and repetition on the television here. It is not easy to find a non-smart television. We have been trying to find one for my cousin in London as his one has packed up. He is still recovering from being so ill in hospital.
That is all for now. We have to get ready to go to the hospital in Exeter for Raymond to have his pacemaker checked. We are not looking forward to this.
Take care, Mary.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
My zoledronic acid infusion went well with no side effects that I'm aware of. I have another dose due just before Christmas and then I think my three years worth will be up. I found being back in the chemotherapy unit slightly traumatic, just too many bad memories and seeing other people suffering is never good.
Interestingly, the nurse who did the infusion said that my veins were very poor and could she use the other arm? I explained about the mastectomy and partial node clearance but she told me that the latest research had shown that it was safe to use the veins in the surgery side. My veins are virtually invisible on the left side so she didn't want to use them anyway in the end. I wondered what your view would be?
I'm going to try to get through to the breast clinic today as I still haven't had a response to my GP referral. Telephoning a particular department is virtually impossible since Covid yet there are very few people in hospital with Covid infections. There used to be a healthcare assistant on the door at the unit to take your temperature, make sure you wore an NHS approved mask and used the handwash, but this has all disappeared. Less precautions than the hairdresser!
My week by the sea was very cold, very wet and very windy. Nonetheless Michael and I enjoyed seeing our grandchildren again. The dreadful weather didn't stop us enjoying ourselves. Paddling in freezing water in the drizzle isn't something I'd ever done before!
I expect it's another busy week ahead for you and Raymond. As I always say, try to keep some time for yourselves.
With love,
Gill xxx
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Hello Gill,
It was nice to have you back on the thread.
I was glad to read that your zoledronic acid infusion went well and that you are not aware of any side effects.
I can understand your feelings being back in the chemotherapy unit. I do not even like going back to the RD&E, as I had too last Thursday as Raymond had to go to get his pacemaker checked. I went with him into the unit and watched the proceedings. I was determined not to let him out of my sight. I was so glad when we left! I must say how surprised I was at how quiet and empty the hospital seemed. The only check was at the front door of the hospital where we were offered some sanitizer. Obviously we were wearing our masks and they were getting quite warm nd uncomfortable.
I do wonder about the latest research concerning use of the mastectomy and node clearance arm for injections etc. I was told at the hospital not to use the mastectomy arm for injections or blood pressure tests and I have kept to that. For the latest routine blood test I just offered the left arm and not the right arm where I had surgery etc. I do not see the point of taking any risks. I remember when I had to have the mole removed and it took two surgeries to clear everything, that it was on my surgery arm and I think caused by radiotherapy treatment, that there was concern about the arm. I was given a box of antibiotics to take in case the cut into the arm caused cellulitis (dangerous). Fortunately I had no problem.
The powers that be are now talking often about a booster vaccination for coronavirus in September and doing it at the same time as the flu injection. The latest thing I heard was that they would do one in each arm. I can tell you now that I shall not be agreeing to that.
I do think it is unacceptable that you have still not had a response to your GP referral. As you know, I had no success with my GP surgery via the telephone. As soon as I went online to the website and filled in various forms, things began to happen almost immediately. Since then Raymond and I have had telephone appointments with our GP and we did get answers to all our questions. We now have it set up online for viewing of tests and medical records. At long last I am going to get a shingles injection on Friday. Before this I was never eligible because my birthday was on September 1st and the age eligibility kept changing on that date!!
it does sound as though you had a very cold week by the sea but at least you got to enjoy being with your grandchildren, so that is a big plus.
How is everything going with Michael?
The thread is still not active enough as far as posters go, but lots of people are viewing.
I do hope Mary will post more, as well as Kath and Helenlouise. I do have concerns about adagio and the terrible heat wave they are having in British Columbia. I am wondering what happened to Jags56.
That is all for now. Take care and have a good week.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Just checking in due to the apparent free for all Johnson is about to grant, and all this booster shot discussion. I am ok about most of the restrictions being lifted as I think its time we started getting back 'to normal' (even though I think we are all on a new path now) but I don't agree with the removal of all masks on public transport and other enclosed areas. It seems odd to be ripping off the bandage entirely when you still have an unvaccinated virus reservoir in the young and the vulnerable coming up on (potentially) needing boosters. But hey ho, summer hols, right?
Instead I think it is a case of I will still be wearing a mask in the shops and Tube and try and be outside at the pub when possible. We are trying to book some time away to see family for early August and mid September and the price of the testing is more than the flights and almost more than the flights and car hire in some cases! An frankly I don't care if I have to isolate on return as I WFH, but what I do care about is bunging more cash to Tory mates, its really infuriating.
I would be more than happy to take a booster, especially if it is different to my initial AZ, but absolutely not at the same time as the flu shot. Maybe a month apart would be ok, flu shot first. I haven't had underarm surgery but I have had strong reactions in the past to other immunizations delivered all at once and would rather NOT go that route if I don't have to!
While I am happy to not be roasting this summer compared to last, and feel awful for what is happening in the PNW, I am rather tired of the rain at this point. Can we not have just a little bit of sun?
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Hello Sondra,
It was such a pleasure to read your post. I really enjoyed it and I remember how much I enjoyed your previous post on here.
As you say, Boris Johnson is about to grant a free-for-all. I was expecting it and I suspect that it was done because of the new Health Minister. I also think it was done because of the football and although it is not supposed to start until July 19th I think people will start freedom day straight away, especially this week with two semi-finals and the final hitting Wembley this week. Why do people go so mad over football? If only there were the same enthusiasm for the serious aspects of life, such as homelessness, poverty, abuse, etc. Boris Johnson is such a show-off and such a hypocrite. I am sick of seeing him in hi-viz jacket and hard hat.
I do agree with what you say about the wearing of masks. I think they should continue to be worn on public transport, in shops and other enclosed areas. Last night I watched some of the news on the new news channel, GBNEWS, and the well known oncologist, Karol Sikora, was on and he was saying that the everyday mask that we are wearing are not much use and probably get spoiled in pockets etc. when not being worn. He said that only the medical grade masks worn in the hospitals offered any protection.
I do hope you manage to find a reasonably priced way of getting to see family members.
I am also wondering about the next round of boosters for the coronavirus. I have concerns about the way they are speaking of doing the flu vaccination at the same time with one in one arm and one in the other. It does not seem right. I shall refuse to have them done like that.
The weather is all over the place. It is supposed to improve on Thursday and Friday, so keep your fingers crossed. I would sooner have our strange weather than the intense heat going on in some places in the US and Canada. My husband and I spent 17 years in Canada, in Ontario and Quebec. The summers were really hot and humid and I do not think I could cope with them now. At least we had air-conditioning. The black fly and mosquitoes were really awful and they really used to go after me. As for the winter months, the less said the better!
I do hope you are keeping well.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I have to agree with you and Sondra. The lifting of restrictions on the 19th will be a nightmare for many of us and extremely divisive. Michael and I shall continue to wear our masks in shops and enclosed indoor areas. They won't be much use though if others are going about mask free. Delta variant infections are rising day on day, this is not the time for 'freedom day' as Johnson puts it. I suspect he and Carrie want to go on a free holiday somewhere exotic paid for by a Tory donor.
I won't be having my flu injection at the same time as my booster Covid vaccination. Neither will I be having an injection of any kind in my surgery side. I always book my flu jab in Boots at Waitrose as the surgery here usually runs out of vaccine very quickly and I don't want to risk missing out.
Like you, I can't help wondering how adagio is coping with the heat at the same time as the remaining side effects of her surgery. I doubt if I'd do well in such high temperatures as I'm left exhausted by hot Summer days even in England - not that I've seen any of those recently.
Michael has had no further heart episodes and the cardiologist has said that he needs to see him when he's actually having an attack. This will mean calling an ambulance. At least the paramedics will have the equipment and expertise to find exactly what's happening as soon as they arrive on the scene. A&E takes a while to reach and then it's always overstretched. I don't think Michael's very keen on doing anything as dramatic as calling an ambulance! He's at home today waiting for a call from his GP. Last week our daughter noticed that a small raised lesion on his head had changed slightly, so he emailed the surgery for an appointment. Examining something like that over the phone doesn't seem very sensible, so he'll ask to be seen.
I've been looking at a piece of 2021 research from Oxford about metaplastic breast cancer. In the paper there is one brief mention that local recurrence of metaplastic cancer is rare, distant metastasis more common. The general consensus in the medical world has usually been that local recurrences were very common and often treatable - the broad rule is that 'metaplastic breast cancer comes back quickly and often'. I have know since diagnosis that once metaplastic cancer has travelled to distant sites the prognosis is dismal. My breast surgeon avoids any questions I have on this point and tends to tell me that too little is known. I shall do some more research later in the week if I can find time.
I hope you and Raymond are managing to have some outdoor exercise. As you say, the weather is so unpredictable. I haven't been out without a coat and umbrella for weeks. Has Raymond's leg shown any sign of improvement?
Keep well.
Love,
Gill xxx
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Hello Gill,
Thank you for your post. I do agree with you about so-called Freedom Day. This is not the time for doing away with restrictions. I agree with you about the wearing of masks. Raymond and I will continue to wear ours in all enclosed places. I think the lax behaviour over a football match is beyond all common sense and we can just wait now for the increase in infections. It has already been a factor. I cannot understand all the yelling and shouting. It does not do the reputation of this country any good. I agree with what you said about Johnson and Co eager for an exotic holiday. There is very little mention of the new variant, the Peru variant or the Greek name Lambda. I would like to know why the scientists seem to be kowtowing to the politicians.
Talking about the football match, I would like to know why the Danish "royals" were allowed to attend the match, but not the fans. None of them should have been allowed to attend and I do not think William Windsor set a good example by being there. What is wrong with this country?!
I do hope adagio is alright. I do hope that she will post in to let us know. It is not good either that we do not know what has happened to Marias or Hanieh and now Jags56. I do not like mysteries.
I find it very odd that Michael's cardiologist want to see Michael when he is having an attack. That does not sound right to me. Surely with all their scans etc. they can diagnose what happened to him. As for calling an ambulance etc., in this country today you could wait for ever!
I do hope you get an answer about the raised lesion on Michael's head.
I do understand your concerns about your metaplastic breast cancer but the best thing is to take one day at a time and live it to the full. None of us knows what is around the corner. We never know what the day may bring. This is the way I try to live.
Raymond and I do get outdoors as much as we can. Yesterday we worked on the beds in the grounds here from 9 am to 3 pm with just a break for some lunch. I make sure that Raymond is very careful and I do all the pruning and weeding etc. Raymond helps by holding the garden bags and packing everything in. He also keeps an eye on me as I do a lot of dodging about.
Tomorrow I am going for my shingles injection and hoping all will be fine. Raymond and I have now set up the viewing of health records online. It is not all that great and only goes back a few months. We were mainly looking at the results of our recent full blood tests, so called. They were not that easy to understand as they were put in a rather muddled way. I doubt if most people would understand them. They should have been formatted in a much simpler way. It looks as though, either patients do not get identical things looked at or they do not figure on the results unless there is a problem.
As for past medical records there seems to be nothing except assumed inoculations given as a child.
That is about all for today. Roll on next week when the football will be over and the news headlines may be about more serious matters. No doubt the boasting about football will go on until hell freezes over! Boris will probably say he was a good luck charm!
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Hope the shingles injection didn't cause you any problems. Like you, when I looked at my medical records online it only showed childhood vaccinations that I'm likely to have had, it's a waste of time. According to the NHS website, you have a legal right to see your records and should access them via your surgery's online services. Clearly, this is wrong.
According to our new Health Secretary, NHS waiting lists could top 13 million. My guess is that this former banker is going to play up the 'NHS isn't working' mantra to soften up the public ready for privatisation. Deprive hospitals of funding, staff and equipment, build up waiting lists and then convince the public that selling it off is the only option. I'm beyond angry.
Michael's heart issue is episodic in nature and nothing shows up on scans unless they are done during an episode. Blood tests at A&E showed that a cardiac event had taken place. If he'd been kept in overnight, as the A&E doctor said should happen, we may have had an answer by now. As it is, we have to wait. I'm no further forward with an appointment at the breast clinic. I'm not too concerned as the lump hasn't changed at all. I'm going to the surgery on Wednesday for a routine blood test and will check that my GP's referred letter was actually sent.
According to the local press, there has been a surge in people coming forward needing a cancer diagnosis. I'm not sure if that's entirely due to the service itself or because people wanted to stay away from a hospital that was a Covid hub. So many deaths occurred in already health compromised patients who contracted Covid whilst in hospital after all. It also seems that women undergoing a mastectomy who have also opted for reconstruction at the same time have been asked to delay reconstruction for now.
I expect the crowds have been allowed at Wembley because it would have made the PM unpopular with his new found ex red wall voters had he closed it to fans. After all, he'd allowed the more elitist Wimbledon, Ascot etc to go ahead. It's madness and a real gift for the Delta variant and the new variants that have recently been identified. I strongly believe that Johnson is pleased that Covid surges are acting as a smokescreen to hide the economic disaster of Brexit. As of yesterday, the UK has the 4th highest number of Delta infections in the world. I fully expect that we'll be 'world beating' again any day now. This is more bad news for cancer patients.
The weather here isn't too bad today, cool with low cloud but it isn't actually raining - for once.
Wishing you and Raymond a peaceful week.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post and for all the effort you put in on the thread.
I must admit I was disappointed with what I was able to see on the GP website for viewing my health records. As you say, the childhood immunisation records are just suppositions as to what a child is supposed to have had. I suppose I was expecting a succinct record of what the NHS says I have been through at the hospital and at the surgery. There would have been nothing from 2002 to 2005 when I was diagnosed with breast cancer. I do not think I went to the surgery here in Exmouth from the time I registered in 2002 until June 2005 when I went to get my breast checked out. Goodness only knows what happened to any GP visits from 1993 until the beginning of 2002 when we lived in Essex on our return from Canada. Who knows what happened to any records before then?
It is the same for Raymond with just assumptions about childhood and the results of the recent blood test. There is absolutely nothing about all the heart incident. It does say in error that he declined warfarin. This was never offered to him!
I think you are right about the new health secretary and what he has said about the NHS waiting list going to 13 million. We know that the Tories do not believe in state health care. They opposed it in 1948 and they have not supported it since then, otherwise it would not be so underfunded.
I was interested in what you said about Michael's heart issue being episodic and nothing showing up on the scans unless they are done during an episode. It sounds very much like atrial fibrillation, irregular heart beat, and especially paroxysmal atrial fibrillation, which is when a regular heartbeat becomes irregular without warning. This is what was happening to Raymond and it was sorted out when he had a three day ambulatory ECG. This is now kept in order through the beta blocker bisoprolol 1.25 mg. When he ended up in A&E whilst on the bus to Exeter by himself I was told at the time that he was having a minor cardiac event. Some minor cardiac event that turned out to be with all the ensued. At that time the cardiology team then reviewed everything and confirmed a diagnosis NSTEMI – a non-st segment elevation myocardial infarction. This is said to be less damaging to your heart and is not the most common heart attack!!
It does not seem right that Michael was not kept in overnight as everything might have been resolved by now.
It is not right, either, that you are not any further forward with an appointment at the breast clinic.
I shall be very interested to see how you get on when you go for your routine blood tests at the surgery on Wednesday.
As for cancer patients, treatments and outcomes, I suspect we shall never know the truth. I think all the statistics have doubts over them and we get what most suits the government for its popularity.
I shall be glad when it is Tuesday. I cannot believe all the uproar over a football match. I wonder what will happen if England does not win.
Did you hear on the news about the very elderly lady who died and who had two different coronaviruses in her? I do know why it seemed such a surprise. Viruses do what they like!
Everything was alright with the shingles injection. I have just felt a bit tired during the weekend.
You might be interested in a Spanish novelist that I recently discovered when I was looking for a novel to read to refresh my rust Spanish. Apparently he is very well known so his work is easily available in English. I am reading the first volume of four, entitled, in English, The Shadow of the Wind by Carlos Ruiz Zafon. I am taking it slowly, when I find the time to read, because I am reading it in both languages. It is highly readable.
Our thread does not seem to be picking up. Really, there is not a lot to say that is new, about TNBC. I do read some of the other threads, but especially Calling all TNs and so I can see how complicated some of the information gets, but the basic journey is still the same of surgery, chemotherapy and radiotherapy.
Recently I was reading something else on the internet when I saw quite by chance an article that was relating taking of the birth control pill to hair loss.
I was also listening recently to You and Yours on Radio 4 and they were talking about some illness that was affecting cats and causing quick deaths. One woman had lost all three cats of various ages. It think it was something to do with leukaemia. Have you heard anything about this?
That is about all for today. It would be nice to hear from others in our group.
Give our best wishes to Michael. Take care of yourselves.
Love.
Sylvia xxxx
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Hello Sylvia,
Apologies for being slow to respond to your post. So much to do this week and no time to catch up with emails, housework, gardening and of course, no me-time.
I don't think GPs feel very happy about allowing us to see our records. They know that there are so many mistakes in them. When undergoing chemotherapy I checked up on what had been recorded about me by a junior doctor during one of my sepsis stays. I was horrified by what was written. Apparently I'd refused a blood transfusion. In fact I'd had one on the ward a few days earlier. On several occasions it was noted that the cancer was in my right breast instead of my left. Medical notes are not supposed to be works of fiction. Raymond's experience with his notes doesn't surprise me at all. It's simply not safe for details of his serious heart issues and surgery to be omitted. What I don't understand is how the Department of Health can organise a sell off of our medical details to a private company for 'research' when research must be based on solid verifiable facts. Also, why is it perfectly acceptable for a private for profit organisation to access our personal medical data, while we can't access it ourselves?
I went off for a routine kidney function blood test at the GP surgery yesterday. The healthcare assistant/phlebotomist took my blood pressure. This was 115/73 which is what I would call optimal. The HCA declared it to be too low and a doctor is to call me on Monday to discuss. No time is given so I must stay in all day. Then came the blood test. She really had no idea and I've never had a blood test where my arm has been raised higher than my heart. After two very painful attempts, needle in but no blood coming out. I stopped her after the second attempt. She booked me in for next Tuesday for another go! I had a a kidney function blood test at the hospital before my zoledronic acid infusion at the end of June and all was well, so why repeat?
Michael had an appointment with his GP yesterday to check the lesion on his scalp. He arrived only to be told that the doctor had forgotten to add him to the appointments list and he couldn't be fitted in anywhere. Michael said he'd come back tomorrow. This wasn't possible as due to staff shortages the surgery was closed all day on Thursdays from now on. I asked if my referral to the breast clinic had actually been sent. It was sent seven weeks ago. I despair!
I too read about the elderly patient, in her nineties I believe, who died from two different variants of Covid. She hadn't been vaccinated and probably had at least one other serious health condition. I've never doubted that it was entirely possible to contract more than one variant at the same time, especially if the lady was in a care home or hospital setting where infections have run riot in most countries. Viruses change all the time, so I think we can expect a few more surprises.
My cats have been vaccinated for leukaemia I hadn't heard anything about a new version. Perhaps the vaccinations are no longer working. Our cats spend their nights roaming the garden and the back field so don't mix with other cats and should be safer than urban cats.
I haven't read any Carlos Ruiz Zafon, in fact I haven't read for pleasure much at all in the last two or three years. There's just so much reading I have to get through in the Diocesan Archive that I've put my own reading list to one side for now. I'll add your suggestion to my list and mention it to my daughter who's an avid reader. I could do with the sort of escapism that a good book offers. I'm hoping for some good weather so that I can spend an afternoon reading outdoors. Somewhere quiet on the coast with a picnic and a good book would be perfect.
Like you, I read other triple negative breast cancer threads, but very little new information appears. Just a few ideas on how to get through treatment and lots of encouragement from those with experience of chemotherapy and the various tests and scans. The UK offers far fewer tests and check ups compared with America, though that might be more to do with money than patient benefit or need.
I'm going to email my GP now as I really don't need a phone call or another failed blood test.
Keep safe and well both of you.
Love,
Gill xxx
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hi ladies, just popping in to say hello and let you know I am well but Australia is locking down left right and centre with the Delta variant trying to make in roads to our sparsely vaccinated population. The infected numbers are still low but we can see how virulent this new version of COVID is with transmission by not so close contact. I am due for second AZ mid august. I saw my oncologist this week and now I’m off to the cardiologist to check on the heart. He is being cautious because of the amount of treatment and twice radiated to the left side. There’s always something. Treatment just plods along and has become quite routine. I feel well and have to say I finally feel free of waiting for the next recurrence. I have a good sense of future for me. My mortality is no longer front and centre. To that end it is the first time in 3 years that I haven’t visited BCO regularly. I’m back working full time mostly from home. I was meant to be delivering training in Sydney next week but that has been cancelled with no plans to reschedule yet. Locally we are in a border bubble but not sure how long before we are all stay at home. I do worry for you in the UK, we find it shocking that the path ahead is the open up and see what happens! Do take care xxx
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Hi helenlouise,
Very glad that you're finally able to push cancer to the back of your mind and put your energy into planning for the future. You've absolutely earned the right to be free of the worry and do all the things you enjoy most again. You're blessed with a career that you enjoy enormously so I really hope Covid backs off and lets you forge ahead. Sydney would have been fun, fingers crossed that it will eventually be rescheduled.
I was amazed that Australia held back on their vaccination programme for so long after the UK. The time to have vaccinated was before Covid arrived. Australia did so well in keeping it out, then procrastinated about jabbing.
Here in England we're pushed from one crisis to another. The Prime Minister is using Covid to hide the disaster that is Brexit. The latest free for all will cause a massive rise in infections and deaths and will be catastrophic for the NHS. We'll just have to plough on and make the best of the latest mad experiment.
It's always good to hear from you. Keep safe.
Gill xxx
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Hello Gill,
Thank you for your latest post.
I do understand that you are busy as I am always chasing time as well. Like you, I do need more me time but it is always very rare these days.
I do understand about the mistakes in our health records and I believe it is because of too much bureaucracy, too many cooks spoiling the broth. I know that there are inaccuracies in my health records as well as Raymond's. I feel it is getting worse and worse. I do not like the fact that no one signs any letters in the NHS and it is all very impersonal. There is also too much messing around with number changing when it comes to blood pressure, blood glucose, and cholesterol. The NHS seems to stagger from one mess to the next.
I do not know where we are going with the coronavirus either. On Radio 4 this morning they were once again pushing flu vaccinations and coronavirus vaccinations for the autumn, but I think they may have already started. They were saying that everyone fifty and over will be offered free flu vaccinations, as well as children about eleven to sixteen. What happens about all the other age groups? There was also news about France and the fact that the dominant coronavirus there is the beta (South African virus) and it seems to be of concern because there is doubt about the efficacy of the AstraZeneca vaccination against it. I think these viruses are going to spread more and more and get worse. It seems to be a race between the vaccines and the virus. Nature has decided there are too many of us and I think we are mixing too much with animals and the wilds.
I know someone who is being treated for something that can be picked up from rodents, cats and dogs, or more specifically their urine and it is pretty nasty. It can also be picked up from water and soil. It is called Weir's disease commonly.
As you say, there is very little new information about triple negative breast cancer. There are lots and lots of different drug names being mentioned but they are probably all lethal.
Yesterday I just happened to put on the Parliament channel and saw that Jeremy Hunt was heading one of those committee meetings and he seemed to know what he was talking about. I would need to try to listen to it in full. I do remember hearing him say that we were at the bottom of the OECD for scans such as CT and MRI. He then also added that, even if we had the scanners, we did not have the qualified staff to use them. How is it that Johnson having not fulfilled any of his promises about conjuring up all those doctors and nurses, not to mention the police, still remains popular? I suppose it is not surprising since Labour is such a shambles. Starmer just does not have what it takes and there is no one else. Labour has destroyed itself by sitting on the fence when it comes to Brexit and immigration.
As for the thread, do you think we should give it a rest for a while? People are viewing but they do not post and we have no new people. It has been going since September 12th 2010 so perhaps it is time to call it a day?
Love and best wishes.
Sylvia xxxx
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Hello Helenlouise,
Thank you for your update about coronavirus in your country.
I was glad to read that all is well with you and that you are feeling optimistic about the future.
I was also glad to read that all is going well at work.
As far as the coronavirus goes here, everything seems to be in a mess. Apart from the delta virus (Indian virus) there has also been mention of another coronavirus that they are calling lambda. I do not know if they have said where that one comes from. I think our government is messing around and the Prime Minister loves to whiffle-waffle, a term I heard yesterday and I think it explains him perfectly.
We are going into a heatwave over the next days and I am dreading it.
Take care of yourself.
Love and best wishes.
Sylvia xxxx
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Hi, Sylvia
I hope you do not stop the thread, I know I haven't been here in a while but I have done it again! In my never-ending search for self-improvement I have hurt my shoulder again, not sure of how badly but I am very frustrated with myself. Yes, I was weak in my rt. arm but I didn't have pain. Now, since I decided to pursue further strengthening I have only caused myself problems. Starting about 10 days ago.
I have so many things to do and don't dare do most of them, that is my rant.
Other than that, as far as Covid goes, I am completely fed up. About a week ago I heard we will be offered necessary booster shots for the Virus in the fall. The next day I heard it wasn't necessary. Yesterday I heard the vaccine's effects are wearing off already, but a little later heard the effects will last for life. It is just a mess, a dreadful mess, along with all of the crazy schemes of our new President and his cohorts. The prices of all items are rising quickly, higher prices are partly driven by their plan to manufacture money and send it out to prospective voters so they can stay in power.
We have gotten much rain lately, and today promises heat and humidity. I hope you are all okay, and will write more later when rt. arm allows.
Love, Mary
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