Calling all triple negative breast cancer patients in the UK
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Hello Gill,
I suppose that different hospitals do different things. It is the postcode lottery. If that were me I would be asking my medical team why you are not getting the full five years.
As for the Interpretation Bill I wonder if this government will last long enough to bring it in! The government should not be overturning the judiciary.
Raymond and I do not bother about Christmas. We are not religious and that is what Christmas is about. It should be just one day. For most people it seems to be about overeating and overdrinking, not to mention buying a load of junk.
As you say, Dawn608 did not bother to post back. It is disappointing when people post, ask questions and then disappear.
I cannot believe what is going on with the present government and their leader. He should be made to resign, but I have no idea who could replace him. Labour is not doing a good job as the opposition and no one seems to have any stature. They all seem to avoid the most important problem of all which, to me, is illegal immigration. This country is overpopulated, there is too much poverty and hardship and yet more and more people are coming in.i have just been reading in the local newspaper about all the building of houses etc. that are planned for Exmouth, the surroundings and East Devon in general. It is too much, especially as schools, hospitals etc. are never mentioned. In Budleigh Salterton the very pleasant cottage hospital was closed, changed to a 'health hub' and now is to be demolished to make way for houses.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I'm just calling in before I take a few days away from the thread. I have quite a lot to catch up with in the archive and at home.
Dawn608 may still be waiting for a diagnosis, as you say hospital treatment really is a postcode lottery now and she may be having difficulties getting a clinic appointment. I've asked my named contact at the breast clinic about women being set adrift after just two years following the close of treatment. It is now hospital policy, apparently there was something in the local press about this. The worst hospital in the country for breast cancer treatment. Worst for waiting times, A&E the longest wait time, resulting in abulances with very sick people urgently needing treatment being stuck outside in a queue. Very recently someone seriously ill with an infection was waiting outside in an ambulance when they arrested and died. The NHS crumbling around us, tens of thousands dying of Covid and unable to have a family member present, while number 10 partied. I'm beyond angry.
Our cottage hospitals have disappeared too. The public protested loudly, but no one in Government listened. Everything is about cost. Where is their humanity, their conscience? I'm beginning to think that this Prime Minister and this Cabinet were simply born without either. Perhaps that's what public schools like Eton are there for, to suck the soul out of our future leaders before they get too soft and start empathising with the sick and underprivileged.
Apologies for the rant, but the revelations of the last two days have been difficult to deal with.
Have a peaceful weekend both of you. I'm off to eat chocolate.
Love,
Gill xxx
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Hello Gill,
Thank you for your recent post.
I understand that you need a break and I hope that you have made progress with your archive and with catching up at home, but, above all, I hope you have had some time to yourself.
It is difficult to remain optimistic during these strange and difficult times. I cannot see that the NHS will ever catch up and be fully functional. I think everything has gone too far. Nothing was working before the pandemic struck and I just think the NHS has become too bureaucratic. It looks as though money is coming through but it is not being spent on frontline staff, because there are too many shortages of them, and so it is being used to create more levels of bureaucracy.
I have no idea what to think about this new coronavirus, Omicron. There are so many contradictions about it. I do think we need a general election and that Boris Johnson has to go. Everything is a joke to him. I do not think much of Starmer either. I honestly cannot think of anyone that would make a good leader on either side!
I find that Raymond and I get in very low spirits these days and the dull wet weather makes it worse.
As for the thread, people continue to view but not post. I have no idea what has happened to Mary, Kath, Helenlouise or adagio. I do hope they are alright.
Thank goodness that we can get some comfort from chocolate. Raymond and I are still eating our 100% Montezuma chocolate. We just have a little each day. We also often have a mug of hot cocoa made with Green and Blacks organic pure cocoa. We make it with hot Alpro soy drink. It is very warming. I am thinking of adding some cinnamon.
I am still looking through some of the other threads. Recently on one of them there was animated posts about calcium and calcium supplements and how to get it in food. I get my calcium only through food and steer clear of calcium supplements.
I hope all is well with you and Michael.
Take care, keep safe, and keep some time for yourself.
Love.
Sylvia xxxx
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Hi Sylvia and Gill
I have come back with pre-christmas greetings, although it sounds as if you are both tired of it already! I am too, its always a hub-bub.
As to Covid, for the most part here life is going on as normal. And yet.........in November the husband of a good friend died of Covid. Very shocking, since he seemed very fit at 67 years old. Husband and wife both became ill, she recovered for the most part, he did not. For what its worth, she is vaxxed and he was not. Her friends, including me, have been trying to help her through all this.
Omicrom seems to be turning out more contagious but not as deadly as Delta. I hope.
Other than that, right now I am busy with mundane chores and shopping for Christmas. Its like a carousel that I can't get off, round and round it goes.
This morning we are having summer-like weather, which is sure to bring in a storm. Hard to remember its December!
I need to read back on the posts, have you heard from Kath? Seems I read of strange things happening in Oz, such as quarantine camps. It would be interesting to hear what she thinks.
I must go, I am helping with a lunch for employees today.
Talk to you soon, love, Mary
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Hello Mary,
It was so nice to see you back on the thread. Please try to come back more often. We need you here with us.
Thank you for your season's greetings. I am fed up with hearing the word Christmas. It seems to me that every sentence I hear uttered ends with Christmas as though it is the be all and end all of everything! It is supposed to be one day to celebrate the birth of Jesus for those who are believers. For most people it seems to be an excuse, two weeks long here, for drinking and eating to excess. For Raymond and me it is just an ordinary day.
I was sorry to read about the death of your good friend from Covid. Did he have any other health problems? The term died of Covid or died with Covid are being used here frequently, so it is difficult to tell whether the person died from something else but it has been attributed and marked up as if it was Covid that killed the person. It is very difficult to tell now with the new Omicron virus what people testing positive have and whether it is Omicron or Delta. Yesterday it was on the television that there were almost 60,000 positive cases of Covid. I assume that this number refers to Delta as I think they are keeping the two virus statistics separate. We are told that Omicron represents about 20% of the population. The deaths statistics we are given seem quite low but I am not sure how much we can believe them.
One thing is for sure, and that is that other illnesses such as the killers heart disease and cancer are not being given the priority that they should have.
We should have much better and more detailed statistics.
I hope you will manage to catch up with the posts you have missed. You will see that Raymond and I had our booster vaccination and had no choice but to have Pfizer. I felt quite unwell for a few days after it and Raymond was not his usual self. We are both fine now but weary of our government, the Prime Minister in particular, and disappointed with the Opposition.
The weather is awful here with dark, cloudy mornings and long dark evenings. It would be nice to see the sun sometime!
We have not heard from Kath or Helenlouise and we do hope they are alright. I would love to know what they think of the Omicron virus. I noticed, when I read through the leaflet that I had with my flu injection that it covered four coronaviruses, so I am wondering whether Omicron is just akin to flu. It could be all out of proportion since no one really knows how many people get the flu each year, since they do not flash up statistics and throw us all into lock-down.
I do hope you are keeping well in this very strange and chaotic world.
Take care of yourself and keep in touch.
Sending you love and best wishes.
Sylvia xxxx
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hi Sylvia and Gill
I was reading my paper this morning and came across an article about Kaiser Medical group doing a series of studies on the long-term effect of Adverse Childhood Experiences, or ACES, on children growing up in California. ACES include neglect, abuse, poverty,divorce, violence, addiction, mental illness. I would add loss of a parent to death at the young age of 7. This is what happened to me and changed my life forever.
It turns out that ACES are tragically common, about 60% of children in US experience at least one adverse event, and about one in 10 experience 4 or more. These early ACES can have big effect on adult life, with these adults are more likely to suffer from anxiety, depression and addiction and they have a higher risk of heart disease and cancer.
That is what interested me, since I am always trying to fathom why I, and you, got this more uncommon form of BC. The article goes on to brain development and is in part a bit over my head.
We have one more employee lunch today, I will be glad when it's over. The dramatic changes in the weather have left me with a stuffy head and feeling off.
I did get the Covid booster last week, no aftereffects.
Talk to you later, Love
Mary
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Hello Mary,
Thank you for your post. What you said about ACES makes interesting reading. All those things listed about experiences that affect children probably apply to a lot of children and will no doubt affect them throughout life. We can all probably tick some of the boxes. Loss of a parent as a child must be very traumatic and it must have been a terrible experience for you.
We shall never know what really caused our cancer. As I have said many times, my oncologist told me that, although I ended up with a tumour status of triple negative, that it did not necessarily start off as such, as cancer cells mutate. The actual cancer type of invasive ductal carcinoma is the most common type, which is what you and I had. Gill did have a rarer cancer type of metaplastic breast cancer. Before Gill came on the thread I remembered only one woman poster before who had metaplastic and she posted as Dulcie. I do not know what happened to her.
There are many risk factors for developing cancer but I do not think we can ever know what caused our own.
Life is not an easy experience and we have ups and downs that somehow we have to try to survive.
I was glad to read that you had no after effects from your Covid booster.
From time to time I buy a French language magazine entitled L'Obs. It is a very good magazine and a serious one. I was interested to find an article in it about the hope of anti-Covid pills. It is quite a long article and I shall try to post more details in another post. For the moment I shall just say that the pills are called Molnupiravir and Paxlovid. They have been brought out by the big American companies Merck and Pfizer. I think Molnupiravir is from Merck and Paxlovid is Pfizer. Studies are apparently in the preliminary stages. I was surprised to read that Great Britain approved the Merck pill before anybody else on November 4th.
Have you any news of this from the US? It said in the article I was reading that the US has not waited for the green light from the FDA and has ordered 10 million doses of the Pfizer treatment.
Apparently these pills came from veterinary research. Paxlovid was used in Germany in 2000 to treat pigs suffering from from diarrhoea due to a coronavirus. As for Molnupiravir Merck used it against a virus of encephalomyelitis in horses in Venezuela and then tested it against MERS coronavirus in 2015. That is just the basic information.
The other day I heard on the television that in this country prescriptions of Molnupiravir were being sent out to serious ill patients. I was very surprised to hear that.
As you can see the thread is not that active with posters at the moment, but still getting plenty of views.
By the way, a question that has popped up lately. Does a patient who has had cancer remain immunosuppressed for ever or just while going through treatment and recovering? What do you think, Mary?
That is all for now. Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I do know what you mean about feeling low. I always find this time of year difficult, but feel especially depressed this year. There's nothing but bad news day in, day out and the Government keeps giving out contradictory messages. Boris Johnson features as the 'good guy' who pitches himself against the scientists. The Chief Medical Officer, is the 'bad guy'. Mr lockdown for Christmas versus Mr carry on partying. I agree with you, we need a general election, the sooner the better.
The NHS will break down completely if Omicron continues to spread at this rate. Johnson's million jabs a day announcement was made without informing the NHS first. When things get tough for him, he just throws another slogan out. There isn't enough vaccine, staff or vaccination hubs to get anywhere close to that figure. The online booking system crashed after Johnson's ridiculous statement. Many people are unable to get their boosters and it's not because they haven't tried to organise one.
Omicron is a disaster for those awaiting life saving treatment. I was at the chemotherapy unit for my infusion on Saturday morning. This is a quiet time with most patients, but not all, having a very quick treatment, sometimes just an injection. The nurse said that during the week the unit is extremely busy. The frontline staff doing their best as always.
Take care of each other and keep enjoying the chocolate.
Love,
Gill xxx
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Hi Mary,
Christmas greetings from Norfolk. Good to know that all's well with you despite this mad world we've been living in for nearly two years now.
I was so sorry to read about your friend's husband losing his life to Covid. A fit 67 year old should have stood a good chance of surviving. His poor wife must be devastated, especially as it could have been avoided. I do understand that people are worried about how the vaccinations might impact on their body in the longer term, but Covid is with us and killing people right now. Social media has a lot to answer for.
I was interested to hear what you had read about adverse childhood experiences affecting us as adults. More than three adverse events might result in ill health. Losing a beloved mother, as you did when you were just seven is a massive shock. A catastrophic event like that must have had a huge impact on your childhood and perhaps your education and future relationships. I've read something about the connection between stress and ill health, especially heart disease and some doctors have mentioned the relationship between stress and cancer.
My mother suffered a brain haemorrhage when I was eight. Probably as a result of my violent father's behaviour. As it occurred in the middle of the night, I can't be sure what happened exactly. She was in hospital and in a coma for a long time and left unable to speak and paralysed on her right side for the rest of her life. I quickly became the victim of my father's aggression, and deviant behaviour. It was a childhood of deprivation and fear. Anyway, enough of that! My story has a happy ending, as I found Michael, have children, grandchildren and my faith. Someone phoned me when my father died in 2000 and I really wished they hadn't. I didn't go to the funeral, although I do say the occasional prayer for him, but have no sense of loss. It was all a long time ago and I doubt if I can lay my breast cancer at his door but will keep an open mind.
Enjoy the Christmas services - assuming the Church is still allowing singing now that Omicron is spreading so quickly. If we don't hear from you again before the New Year, I'm going to wish you a happy, healthy and peaceful 2022✨🙏🕯️
Much love,
Gill xxx
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hi Sylvia. I noticed your question about wanting to know my opinion on whether our immune systems rebound. I think, in my case, which is all I have to go on, my immune system is not as robust as it used to be. Back when I was pondering whether or not to get my 1st covid vaccine, a friend advised yes, because she was sure my immune system was low. My oncology nurse told me my immune system had come back as it was before chemo. Since right now, I am suffering a cold, I feel like my immunity is not good at all.
What do you think?
Love, Mary
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Hello Mary,
Since I asked you what you thought about the immune system, I have asked two medically qualified people and they have both said that you do not remain permanently immunosuppressed, but just during chemotherapy and for a while afterwards. This is what I think and it makes the most sense to me.
We have to remember that as we age our immune system is not likely to be as strong and effective as when we were younger. I think it depends if we have other health problems and how we are ageing. I see a few people around me here who have really gone downhill since they entered their nineties. We just have to soldier on the best we can.
It looks as though the powers that be are going to start pushing for vaccination number 4 for Covid. I heard that Israel is going to start doing it. It seems these vaccinations are only good for three months.
Yesterday I listened to President Biden making a speech and I thought he looked ill. As for our Prime Minister, he needs to pack it in. All he can do is come up with slogans. We have had Get Brexit done, Oven-ready deal, and now we have Get Boosted NOW. The first one was Wash your hands, stay at home, save the NHS.
I do hope you will shake off your cold and feel better soon.
Have a Happy and Safe Christmas and Best Wishes for a Healthy and Stress-free New Year.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I agree with everything you say about Boris Johnson. He is very shallow and I cannot see that he has any charisma. His scruffy hair is an embarrassment.
I do hope that omicron wears itself out. As I told Mary, I think whatever happens we are going to get a fourth vaccination pushed on us. I do wonder what it is doing to our bodies and what the long-term side effects might be.
I think it is shameful how other serious diseases like cancer and heart disease are being pushed aside. My only remaining aunt keeps having her scans cancelled and the latest one is not until January 24th. My elderly neighbour across the road needs a serious operation for cancer and, again, that has been cancelled. One of my female cousins has had to be taken twice to hospital by ambulance for breathing problems with COPD. While she was there they tried to put her in a bed in a ward full of Covid patients, but she refused, so they found her a room by herself. When she was discharged to had to get herself a taxi to get home. That cost her £30.
I watched a beautiful sunrise here in Exmouth this morning. It was spectacular but did not last long. We have even had a few fleeting rays of sunshine today.
I read your post to Mary and felt so sad about what you went through in your childhood. I am glad all has worked out well for you.
We shall definitely keep on eating our 100% Montezuma chocolate. We all need something to make us feel good in these trying times.
That is all for now.
With love and best wishes for a Happy Christmas and a Sress-free healthy New Year.
Ps. I do hope we hear from Kath and Helenlouise. They are having some strange weather in Australia. I do wonder, also, what has happened to adagio,
Sylvia xxxx
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Hello Sylvia,
What a beautiful start to the day you had. As we live in the marshes we usually wake up to mist rising from the fields, at least during the Winter months. Not as life affirming as watching the sun coming up at the start of a new day, but the mist often has a beauty all of it's own. As always, I would like to see some snow for Christmas - though I realise that I'm probably on my own with that!
We've cancelled our plans and will be spending Christmas at home, just the two of us. I think socialising is too much of a risk until we know more about the longer term issues with Omicron. We seem to be taking all the data from South Africa and it's looking good, but I'm going to be cautious. Now is not a time to be ill. Hospitals are already overstretched, the ambulance service struggling with so many staff off sick or isolating and in some areas at least one in ten doctors is absent for the same reason. The fire service and other essential services are also missing staff and unable to function effectively. This happens every Winter, but now we have Omicron in the mix. I expect the Prime Minister will be off on a freebie holiday somewhere far away from the chaos.
On a happier note, we've survived another strange and challenging year. You and Raymond, Mary and Kath - who calls in from time to time and Michael and me. I hope Helenlouise, adagio, Flora and other old friends will call in before the New Year, just to let us know how they are.
Wishing you and Raymond a peaceful Christmas and a very Happy New Year.
With much love,
Gill xxx
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Hello Gill,
I am just posting to wish you a good Christmas and a Happy, Healthy New Year. Like you Raymond and I will be staying at home and just relaxing. Let us hope that next year will be a more normal one, but I have my doubts. The push is on about a fourth booster vaccine in a few months time as it seems these vaccinations work only for three months. Despite all that was said about how wonderful the first two vaccines were, it is now being said that they were not that effective. There is also talk of a custom-made vaccine for Omicron, not to mention two anti-viral pills for general use. How much can a body take?
I think the main problem now with the NHS is going to be staff falling ill and thus staff shortages. A neighbour of ours had his hospital appointment cancelled today half an hour before he was due at the hospital, because his consultant was ill.
I do hope the thread picks up a bit in the New Year. It looks as though adagio, Helenlouise and Kath are not posting regularly at the moment. All we can hope is that they are fine because so many people are getting Omicron.
Wishing you and Michael all the very best and thanking you for your dedication to the thread.
Love and best wishes.
Sylvia xxxx
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Seasons Greetings to all.
Sylvia xxxx
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Hello Sylvia,
Well, that's Christmas over! We didn't risk going to any Christmas services at the Cathedral, but watched online and noticed that there were people not wearing masks and social distancing appears to have been abandoned my many. I don't believe that anyone should be be exempted from mask wearing, the asthma excuse makes me particularly angry. People with asthma are extremely vulnerable and need to take extra precautions, not abandon them altogether.
It does look as though Omicron is very much milder than Delta, but it's affecting our vital services badly. When hospital staff become ill it means that patients inevitably have their surgeries and treatments cancelled. I wish Johnson would get that into his thick head. He's lost all authority to govern after partying and holidaying his way through 2020 and 2021. In an attempt to regain his popularity he's decided to let Omicron run wild and 'let the bodies pile high'. The victims probably won't be those who become infected with Covid, they will be those on hospital waiting lists.
I wonder how things are in Australia, Canada and America? Perhaps someone could drop in and let us know. The anti-vaccination movement is particularly strong in some areas of America. We have had very little in the way of protests here in Norwich. I did read that a testing centre in Milton Keynes had been attacked by rent-a-mob. Staff and volunteers were forced to lock themselves into offices as they were threatened. Boxes were stolen, presumably these were testing kits. Law and order reforms not going too well then. Testing is vital in order to protect essential services, yet there's nothing in place to protect testing centres.
I have everything crossed for a happier and safer New Year for both you and Raymond and all those we care about.
With love,
Gill xxx
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Hello Sylvia, Gill, Mary, Kath and all on this thread. It has been a very long time no read no post. I apologise for being away as long as I have without word. September was the last time I was here. Needless to say but I haven't and probably won't read all that I have missed.
As you know COVID is ramping up here. A friends father was the first person to die locally. He was in a nursing home that ended up losing 16 residents. Very sad and badly managed. We all ended up close contacts but no one in the family or friends ended up with it. I got a text yesterday from my neighbour who has it along with her son. Our eldest son up north said it is now not a matter of IF you know someone with it but HOW MANY you know with it. As said by many omicron is not as lethal but because it is so virulent it is causing havoc across the world.
We had a busy Christmas Day hosting 15 for lunch. We had a family of 5 from out of town that we had not met (our youngest sons girlfriends family). It was fun to have new faces at the table. It has been a good festive season in very many respects and a nice way to end a busy year.
Last semester I was back working full time and delivering training Monday Tuesday and Wednesday evenings from home. I picked up a new group completing same training but different model of delivery (over 24 months as opposed to 12). So that extra group made it busy and quite a different routine with three nights in my home office. Have decided that can't do that indefinitely at my age, so the plan for next year will be only one night group.
Saw my MO today and have a PET scheduled for next week with a biopsy planned but yet to be scheduled. It appears there maybe cancer back in my skin around that pesky scar. The area is red which it has been for a long time and I have had increasing pain in my ribs. I had a massive hay fever attack in late October and started having pain with all the sneezing. GP sent me for an X-ray that came back negative, so didn't think much of it except the pain whilst haphazard has become worse and now interrupts my sleep. MO said I was naughty putting up with pain, so started back on targin today. Also had my last herceptin and perjeta pending outcome of next few weeks. MO has mentioned Kadcyla (herceptin with a cytotoxic agent) as possible next line of treatment.
We were booked to fly to Coffs Harbour on Monday to visit with our daughter and see my Aunty who turned 99 in November. Sadly we now can't go but in a way I think both of us are relieved. With the number of cases rising I don't think airports are the best place to be unless you really must be.
That's enough from me for now. I do hope you and your families have had a merry Christmas and I wish you a very happy and safe new year.
Best regards Helen xxx
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Hello Helen,
Your year seems to have been full on. I know from all you've said in the past, that you like it that way as your work is so interesting. It sounds sensible to reduce your workload to one night group, though you'll still have plenty to be getting on with.
I've been following the rise of Covid in other countries and it's looking a bit grim at the moment. We have so many infections here, the highest number in Europe, mainly Omicron. However, there's fewer deaths and a smaller number have become seriously ill. Even so, our hospitals can no longer cope as so many staff members are either at home with Omicron or isolating. Not sure that schools, colleges and universities will open next week as staffing is the big issue there too.
I do hope that your cancer isn't making a comeback, there could be another explanation for the rib pain, but you need to know exactly what's happening. Dratted scar tissue, I recall how difficult it was to control. Let's keep everything crossed that the PET is clear and that a biopsy is organised promptly. You really don't need such a stressful start to 2022. Let us know what's happening.
Here's to a happy, healthy and peaceful New Year to you and all your family.
Love,
Gill xxx
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Hello Gill,
I can echo what you say about Christmas. I am glad it is over as I think it drags on too long and has lost the religious meaning that it is meant to have. I am so sick of the constant emphasis on eating and drinking that we have in this country. I think we have too many pubs and restaurants. To hear the importance of keeping them open gets very boring. There seems to be no concern about all the overweight and obese people, overweight children, people seriously addicted to alcohol, not to mention other drugs. The NHS does not stand a chance to survive. It was meant for a 1948 population and people with a different mentality. Everything now is about 'rights' and not responsibilities.
As for Omicron, it may not be as harmful as Delta, but with the number of people getting infected it could still have a serious effect on the NHS and we do not know the long term problems of long Covid. We also do not know how older people will be affected when and if they start getting Omicron in high numbers. I am pretty sure we are heading for being told that we need another booster. It could also be that Omicron will mutate into another virus.
I see that Helenlouise must have read your post as she has now popped in.
High infection rates are now not the only problem. There are staff shortages everywhere and Boris Johnson can promise what he likes but if there are no staff to carry out all sorts of jobs, then the promises will not be fulfilled. He has definitely not got Brexit done and has nothing to be proud of with the coronavirus. I think it is about time we stopped talking about 'getting jabbed'! Where is our language going?
Today I could hardly believe that Tony Blair has been given a special knighthood. What for? An illegal war in Iraq? Where on earth are we going? Where is the just and equal society, not to mention democratic, that we are supposed to be? All titles of this kind should be done away with.
That is about all for now. Raymond and I wish you a Happy, Healthy and Safe New Year.
Love.
Sylvia xxxx
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Hello Helenlouise,
It was nice to see you back on the thread. We have missed you.
I can see from your post that you are having the same Covid problems as we are having here. I can see no end to it.
It sounds as though you had an enjoyable Christmas. You have certainly worked hard and you deserved a break with your family.
It sounds as though you are extremely busy with your work, which I know you enjoy, but please look after yourself.
I do hope you will have good news from your PET scan and I hope that you get your biopsy soon. I do hope that your cancer has not come back, because you have been through so much. Please let us know how you get on.
I do hope the oxycodone/naloxone (Targin) has brought you some relief from the pain. It sounds like quite a strong drug.
I do hope you will be free of trastuzumab (Herceptin) and pertuzumab (Perjeta) as your body is having to cope with a lot of drugs and would probably benefit from being drug free for a while.
How do you feel about your next line of treatment? I see that your MO has mentioned trastuzumab which you are already taking, because Herceptin and Kadcyla which are both brand names for trastuzumab, a monoclonal antibody. Do you know what the cytotoxic drug will be?
That is about all for now. Wishing you a very Happy, Healthy and Safe New Year. Let us hope that Omicron will vanish and not mutate into yet another variant.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I just wanted to wish everybody on this thread and on the forum a very Happy, Healthy and Safe New Year.
To all of you going through treatments or waiting for treatment, just take one day at a time and tell yourself that you can do this and will get through it.
For those of you in the UK I do hope that more attention will be given to you and that this priority to Covid will take a back seat. With breast cancer, like all cancers, time is of the essence, and it is not right to keep patients waiting for diagnosis or treatment. Be your own advocate and push to get your treatment and diagnosis.
Love and best wishes to everyone.
Sylvia xxxx
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Hi Sylvia
Merry Christmas and Happy New Year! Like you and Gill I am glad the hoopla is over. I did have my stepkids over and other visits on Christmas as normal but many routines have been changed. I still have one Christmas coming up on Jan. 15th. As for New Years Eve it was me and the dog, not too exciting!
As for Covid, in my area noone pays too much attention, and yet it seems to keep reinfecting the school children. They don't get ill, but probably pass it on to family and friends. Thank heavens it is more mild, but it is causing a lot of extra work for the school nurses and officials, the county Health, and hospitals. Since it is winter there are a lot of respiratory illnesses Going around, I wouldn't want to get Covid while suffering one of those.
I was glad to see Helen checked in, just think, I was supposed to be on a trip down under right now.
I am off for Sunday Church, I have to bundle up, its very cold today. 12 degrees F right now, with snow.
Talk soon, love, Mary
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Hello Mary,
It was nice to hear from you and I do hope you will have a very happy year in 2022, but above all a healthy one.
How are you feeling these days?
It must be very disappointing to think that, if we had not been cursed with Covid, you would now have been in Australia. Let us hope it will still happen. One of my friends here has a daughter in Australia and she is hoping to go for a visit one day soon.
As for Covid, I think we are going to have to learn to live with it. They may well add it to the flu vaccine in future. The NHS is in dire straits here and I do not know how it is not collapsing. It needs a complete remake and modernising. In fact the whole of the UK needs modernising! Would you believe that a modern country is still going through a ritual of giving people honours that put titles in front of their names and the knighthoods go back to about the 1300s to King Edward III, I think. It is unbelievable. Would you believe that Tony Blair has been given a knighthood, which is of a higher order than some of the other knighthoods!!! Talk about pecking orders. Our system just cannot stop allowing people to think they are somehow better than others and yet we call ourselves a democracy and talk about justice and equality! Have you ever seen the comedy sketch with John Cleese and Ronnie Barker and Ronnie Corbett. It is all about how each of them can look down on the other, except the lowest one. There is such snobbery in this country.
I do not envy you your cold weather. We have just had a mild spell and we are told it was record-breaking, 16.5 C in St. James Park in London. It has been mild in Exmouth, but so damp and wet that you do not really feel it. Now it is going cold.
I was so glad to see Helenlouise posting on the thread. She has been through so much. Let us hope she has a better year and that we all have a better year. Our life has seemed stressful for five years.
If you have any ideas about what we should be posting about on the thread, they would be most welcome.
Take care, Mary and keep in touch. Raymond sends his regards.
Love.
Sylvia xxxx
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Hello everyone,
I have just read on the Microsoft News that there is a new drug available for osteoporosis sufferers called Romosozumab. Apparently it helps to recreate new bone. I found a link on the Royal Osteoporosis Society website. The link is:
https://theros.org.uk/information-and-support/osteoporosis/treatment/romosozumab-evenity/
It seems that so far in England and Wales NICE is not yet funding it, but Scotland and Northern Ireland are. When oh when are we really going to be a United country? If we are going to do things like this we might as well be really separate.
Best wishes.
Sylvia xxxx
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Hello Sylvia,
Omicron cases are rising here, but there's no news about how the Norfolk and Norwich University Hospital is coping. It doesn't bode well for those awaiting diagnosis and treatment for other medical conditions or emergency surgery. I dread to think what A&E is like now that so many staff are either ill with Omicron or isolating.
I agree with your comments regarding the differences between the health services, treatment and drugs available in the different countries of the UK. There's a world of difference between Scotland and England and I'm always amazed by the speed at which my son (living in Fife) is able to get a GP or physiotherapy appointment. This has been the case throughout the pandemic. If only England had Nicola Sturgeon as Prime Minister. I'm not remotely surprised that osteoporosis drugs are being denied to patients in England whilst being offered to Scotland and Northern Ireland. Strong politicians always terrify Johnson and both Scotland and N. Ireland have these in abundance.
I can't see why Tony Blair has been awarded a Knighthood. Under his leadership we had a completely unnecessary war which cost many lives, he also saddled new NHS hospitals with heavy debts (originally a Tory idea), opened numerous pretend Universities and introduced tuition fees. I would like to see an end to the honours system, it shouldn't have any place in a modern country.
Nobody has mentioned drugs shortages for some time. As many medications and medical equipment comes to us via the EU, I wonder if this will be the next crisis? Costs will undoubtedly rise. All these uncertainties are causing those of us who care, a great deal of stress.
The Spring bulbs are pushing through the ground and it's only two and a half months until Spring. Hold that thought!
Keep warm and well.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
I really do not know what to say about the way we are all living in the UK because of this virus. I know when it first began I thought that the best way to go was the herd way and treat the virus the same way we deal with flu. We know that flu can kill loads of people, but we just carry on regardless. It seems now that the herd way has come back into focus, but at the same time they are talking about another variant that is already in India. I have also heard on the airwaves that we cannot vaccinate our way out of this pandemic and there is also a lot of talk about antiviral medication. It is all very confusing. I am not really keen to get another booster, especially when it is being pushed forward by Boris Johnson. I cannot believe what he is getting away with.
I saw a bit of his behaviour at PMQs yesterday and the whole setup is like a pantomime. I thought that Angela Rayner was better than Keir Starmer ever is.
We need strong leaders but we do not have them.
There is a lot of opposition to Tony Blair and this silly knighthood. What a stupid title with reference to a garter. I just see Tony Blair as the dishonest person who started an illegal war and bombed Iraq to bits. Like you, I would like to see an end to the honours system. It should have no place in a modern country.
I see we are getting lots of views but we are short on posts. Are we all suffering from coronavirus fatigue? If only we could have a general election and also a referendum on what sort of country we want to live in.
Sending you best wishes.
Love.
Sylvia xxxx
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Hello Sylvia,
The Omicron situation isn't improving any and we are now reading about people being reinfected. Hospitals here have declared a critical incident and six bed wards have had two extra beds added to them as there's no longer sufficient staff to manage all the bays. Patients are too close together, but it's the only way to cope with the shortages. Hospital staff are exhausted.
On January 5th, the Guardian reported that the new cancer detecting blood test which will enable people with non specific symptoms to be diagnosed early, will be used on 2000 - 3000 people. It's very good news, but will only work as intended if we have sufficient surgeons, oncologists, beds, operating theatres..... I know that I've said this before, but it's high time we had specialist cancer hospitals spread across the country. Chemotherapy could be left to the existing hospital units closer to patients' homes. Cancer is such a common disease and we need a different approach.
We're very short of posts, as are many threads. We haven't heard from adagio for a long time. I'm also wondering if Helenlouise has had her scan results yet.
Wishing you a peaceful weekend. Take care.
Love,
Gill xxx
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Hello everyone,
Happy New Year, wishing everyone many blessings for theyear ahead. I keep hoping for blessings for this new year but it has been a tough beginning in the past two weeks. My children have lost people that they went school with one was 31 woman died from Covid and the other young woman 33 was killed in an automobile accident early in the morning as she was driving to work. It’s been a heavy week. Too much illness in the area where I live, my son is dealing with terrible nursing staff shortage, over 100 nurses out sick. He and one other director of nursing are the only directors that are still testing negative. It is quite a remarkable time.
I do have a question if anyone uses melatonin as a supplement maybe as a preventative? For an immune boost?
Wish there was more news about progress being made on the TNBC end of things.
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Hello Paula,
What an appalling two weeks you've had. Thirty is far too young to die, what a loss to their families and friends and all who knew them.
I feel for your son and his colleague. I do hope they can evade Omicron, but working as director of nursing would make that seem unlikely since the virus is all over our hospitals. In my part of England the hospitals and ambulance service declared a critical incident two days ago. This means that the level of care that hospitals can offer is now unsafe. In some areas, people with suspected heart attacks are being asked to make their own way to hospital as so many ambulance staff are off sick.
I'm not sure about melatonin supplements. As an aid to sleep I can see that they may be useful in the short term, but using them to boost the immune system implies longer term use. For myself, I'd want to avoid that. Perhaps someone with more information will drop in?
After your traumatic start to 2022, I'm hoping that you'll have some peaceful and happier times ahead.
Love,
Gill X
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Hello Sylvia and TNBC Sisters - Happy New Year!
I see some familiar names on here posting some good updates, and I see new names. I'm sending much love and prayers to all, and to the newcomers, I'm sorry you have to be here, and I'm glad you found a way to these boards, and the collective sharing of information, love, and friendship that transpires.
I'm celebrating my 10-year healthy victory this week! I guess I should really say I'm announcing it, because literally every day is a gift, not just the milestones.
When I was on these boards, the women were amazing, and I looked forward to seeing updates from other Survivors who were years out from my diagnosis. So this is me doing that! And in particular, is our forum sister and 16-year+ survivor Sylvia, and she is many more years out from me. I looked to her then, and still do for the sign that we can do it and that it can be done. As well as someone by the name of Noni Jones, who sometimes posts on these TNBC boards (28+ years out I think,) and Titan, the OG of the TNBC Forum, who kicked it off, and showed us how it's done! I hope all of us can find continued encouragement from seeing annual posts from Survivors, and especially from the detailed information that Sylvia shares. I do intend to catch up on your posts Sylvia, so I can stay aware of all strategies, foot notes, and news!! And I like reading what you and Raymond are up to and the beautiful photos you sometimes post.
I pray in 2022 we can all live a little easier, dream a little bigger, and love a little stronger.
Love, Debra 💗
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