Calling all triple negative breast cancer patients in the UK
Comments
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Hello Kath, HelenLouise, Mary, Maryjv, Gill and Marias,
Thank you for your posts over the past week or so which I have read with great interest. I shall try to answer during this coming week.
I am still very busy looking after Raymond and he is making very good progress.
We could have done without all this 24/7 coronavirus. Boris has certainly not done us any good with his muddle.
Many thanks to Kath for her information and yes please post any information you have this virus. We get so much contradictory information.
Greetings also to adagio and Jags56 and any others I may have forgotten.
Love.
Sylvia xxxx
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Hello all of You.
I send You this paper
https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca
Abrazos
Marias
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Hi, it's good that we are all well. schools and universities closed in our country.
I suspended the trips to lymphatic drainage and physiotherapy through contagion. Many people go to these places and like me with many pathologies.
I trust we will pass as humanity is proof soon. In Colombia many foreigners have come and they do not quarantine some French Spanish and Portuguese have been deported but it continues to happen. Tomorrow only those who live here will enter Colombia..
Abrazo a
Marías
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Hello The link i send is a really interesting paper.
Abrazos
Marias
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Hi Marias,
Thank you for the link, the graphs regarding infection rates in Wuhan were especially interesting. It's a worrying time for everyone but particularly for those undergoing treatment. It seems sensible to cancel all hospital trips that aren't absolutely essential for you.
In the UK the schools remain open but a lot of Universities are closing. If the schools where to shut, healthcare workers would have to stay at home to look after their children. This would mean that hospitals would be even more short-staffed here than they already are.
Keep safe and well Marias.
Much love,
Gill xxx
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Hello Gill,
I am trying to catch up on past posts, so I shall have to see how far I can get.
With reference to the article about evolutionary cancer, it was quite a complicated article. To simplify I think the writer was trying to say that cancer in the body over time mutates in much the same way as Nature has evolved through evolution. I think the article is saying that at the first level for some reason a normal cell mutates and becomes cancerous and they are calling this in an illustration the trunk part, as in a tree. That first mutation stays and propagates throughout the body and this is illustrated by the branches of a tree. The first mutation is constant and propagates at each stage. That is why, I suppose, that wherever your breast cancer moves to in the body it is always known as breast cancer. This is just my own simple understanding of the article.
I think the scientists are trying to work out why that first mutation takes place and somehow prevent it or cure it at source.
It is quite a nice day here today and Raymond has been doing a bit of walking. It will all take time.
Everything is complicated by this coronavirus and the absolute scaremongering that is going on.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your kind words about Raymond. Yes, he does talk about the whole experience of his coronary bypass surgery. It is a very barbaric procedure and the surgery lasts about four hours, most of which is on a heart/lung machine. I could visualise it all because in my BMA medical books there was a full illustration of the operating room. Although Raymond was asleep when he went into the operating room something seems to play on the subconscious mind.
It is still only just a month that the operation took place. It was on Valentine's Day! It was all a bit of a shock for the two of us because he was just being treated for atrial fibrillation and a touch of angina.
We were upset about clogged arteries because he did not have a cholesterol problem and just a touch of angina.
I cannot believe how routine this surgery is. We have three friends and neighbours close to us here who all had it at a much younger age.
We are concerned about this coronavirus and wonder where it is going. There has been too much dramatising and scaremongering.
I do hope all is going well with you.
Love.
Sylvia xxxx
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We are stopping chemo, this one for me has been much worse than the tough one! Neuropathy in left fingers, hemmoroid aggrevated, nose bleeds def vascular impact! I go see plastic surgery tomorrow, surgeon on Thursday and move forward with surgery! I am praying and staying positive and optimistic that this chemo was enough🙏❤️ In San Antonio I just learned this morning we have a new case at the hospital affiliated with my treatment center (dif building) and my MO tells me they are canceling elective surgeries but hope we are not jmpacted
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Hello Kath,
Thank you for your very interesting post. Do take care of yourself in all of this.
I was interested to read that you were saying that this coronavirus is a strain of flu. This is exactly what I had read in a very long chapter on viruses etc. in one of my BMA medical books. Our Prime Minister was saying that it was not a flu strain! My understanding of this one is that it can affect the lungs and that is when it is bad.
I look forward to reading your links if you can spare the time to post them.
Thinking of you. One of my best friends flew off to Australia for the first time last week to visit her daughter. I think she is going to be stuck there!
Love.
Sylvia xxxx
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Hello Maryjv,
I do hope that all has gone well with your fourth paclitaxel (Taxol) today. The tiredness and side effects do tend to increase as you go through your chemotherapy treatment, so this will be one reason why the paclitaxel is having more of an effect on you. It is well known however that the taxane drugs, both paclitaxel and docetaxel (Taxotere) cause neuropathy. I became aware of a problem in my feet when I finished my six months of chemotherapy and the oncologist said straight away that it was caused by the taxane drugs. You do learn to live with it.
These drugs can also cause lymphoedema. There is an excellent book about all this entitled Let's Talk Lymphoedema.
Keep looking forward. You will get through all this.
Love.
Sylvia xxxx
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Hello everyone,
I have run out of time, so I shall catch up with Helenlouise and Marias tomorrow.
Thinking of all of you and wishing you the very best.
Love.
Sylvia xxxx
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Hi Maryjv,
Stopping the Taxol sounds sensible. I found it very difficult to recover from, very tiring, nauseating and always left me in hospital with sepsis. My white cell count was very slow to respond to Neulasta injections too. I wouldn't want to take the risk again. I'm so sorry about your neuropathy and hope it improves a little over time.
Your surgery is necessary, not elective so should go ahead as planned. We now have a case of coronavirus at the hospital where I was treated. Operating theatres are extremely clean places and recovery time from surgery is short. From surgery (mastectomy) to discharge was 23 hours for me and would have been quicker had the pharmacy filled my prescription on time. In the circumstances the hospital will want you out as quickly as possible. You're on my prayer list Mary.
Keep safe,
Love
Gill xxx
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Thank you Gill! I pray for all of my cancer family as well🙏❤️ Anything is possible with faith and prayer!
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Hello Sylvia,
The WHO has a clear explanation of the differences and similarities between COVID-19 and normal flu. It's interesting to read, but inevitably leaves a lot of questions unanswered simply because no one has the answers yet. I think most of us are hoping that it doesn't follow the pattern of Spanish Flu which died down only to return a few months later in an even deadlier form. We'll get through this, and I do wish the press would calm down a bit.
Thank you for your explanation of the evolutionary cancer article. Preventing or treating that initial mutation would transform the lives of so many. I really hope that scientists have this right because the usual treatment, especially chemotherapy, is utterly brutal.
I'm glad to know that Raymond is improving. I read your post to Mary. I think all surgery is fairly barbaric albeit necessary. Heart surgery must be traumatic, and I do think that patients should be offered professional emotional support afterwards. Recovery from major surgery is more than just physical recovery.
Sunny and fairly warm here this morning. The hedgerow was full of Spring wildflowers, including wild violets, scented and very pretty.
Keep well both of you.
Much love,
Gill xxx
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hi everyone i got a massager for my arm. considered that lymphedema has been greatly reduced. he is tired and unwilling to exercise or walk. I have been in the hammock most of the day, if I get a cough or a sore throat I immediately think that I am already infected with the coronavirus. But then the symptoms go away and only fatigue remains. I have asked to work from home supporting my project from the emotional support page. the university is closed to students. I did not go back to lymphatic massage and I think that the device I bought will support me for a few days. I had a girl who came every day to help me with the household chores but since Saturday I told her not to come back for fear of contagion of the coronavirus. we are a third world country open to "legs" to the whole world and without serious controls at airports and borders. so in one week we already have 57 infected. 37 imported and 20 that those 37 have infected. I don't want to know how many more will come out tomorrow. I have to go to the hospital for chemotherapy but since there are so many hours of waiting I will see if I can get someone to help me with that. Tomorrow my brother could not go because he is going to give a lecture on his historical passion which is the Saint Joseph galleon sunk by the English 1708.
Maryjv, I trust everything will go very well with you and you will recover quickly from your hemorrhoids and neuropathic pain. Surgery is necessary but you had to wait a while for your defenses to be high. Taxol greatly lowers white blood cells.
Sylvie, I trust Raymond to recover very soon from that operation, everything they found was incredible, even if his symptoms did not show it.
Gill thanks for watching everyone like Mary. receive a hug
Abrazos
Marias
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Hi Marias,
I have just written to you but the whole thing has suddenly disappeared! My fault I expect.
I can see why you are so worried. I've been reading Al Jazeera news, Venezuelans are desperate for help and your borders are not secure, so it's inevitable that they will find a way in. It's a dire situation as coronavirus is so easily spread. We're very nervous of this dreadful pandemic in the UK, but it's much, much worse for you living in a country where the health service is completely chaotic.
Marias, you are doing absolutely everything that you can. You're right to ask the girl who helps you with daily chores to leave, despite this making life more difficult when you're so tired. Buying a massage device was a very good idea, thanks for the photo. Chemotherapy is a real problem when you have to wait in the hospital for so long. I wonder if it would be possible to wait outside, away from people until the nurse is absolutely ready to give you your infusion. It would reduce the risk a little. I'm sure you've already thought of this.
I'm glad you're able to work from home. It's an important project. Many people are working at home in the UK too. It's not possible for most people though as the country still has to be kept running. I'm very grateful to our emergency services, care workers, health services staff, teachers and many more who put themselves at risk for the rest of us. There are so many good people in the world but too many useless, corrupt leaders who are only interested in power and money.
Keep doing what you can to protect yourself. Many of us here will be thinking about you.
With love and prayers,
Gill xxx
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Hi Maryjv,
You're right, everything is possible. We'll all get through this horrible time. Hard not to worry about the future, but every reason to be optimistic.
Keep moving forward.
Much love,
Gill xxx
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hi all, things are just crazy here in Australia with the threat of covid 19. People are panic buying food, toilet paper (go figure) some businesses are going broke, most events of any note have been cancelled including the grandprix on the day it was to commence, some schools have closed and it seems many people are scared and some are angry. In NSW it is law that you isolate for 2 weeks if you have been overseas. I hate to think about but I reckon a global recession will result. Not to mention so many many deaths worldwide. If we don’t all actively work to slow the spread it’s going to be a major catastrophe.
In the interim I had my port placed under right clavical last Thursday. It’s still quite sore and protrudes a lot. Not sure if they will be able to use on Thursday for my first round of chemo. Had my hair cut short in preparation.
A dear old friend is actively dying at present so I have been visiting her in palliative care several times a day. Very sad as we are her only family locally. She was my mum’s bestie and became our adopted mum and matriarch since Mum passed.
I have decided to keep working half load which started this week, against the wishes of my MO, so will see how that goes.
My family have called off a big birthday celebration because of the increased risk of infection from the virus plus me being immunosuppressed
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Unprecedented times.
Pleased take care one and all xxx
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Hello Helenlouise,
I just wanted to pop in to say that I hope all goes well with your first round of chemotherapy on Thursday. You have already been through such a lot but you will get through this.
I think all this panic over the coronavirus is getting to us all and making us all afraid. Our government has not been handling it very well and our NHS is in a terrible state and I do not think it will be able to cope.
Take care.
Love
Sylvia xxxx
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Hello Marias,
I am just popping in to say that I hope all goes well with your chemotherapy. I shall be thinking of you.
Love,
Sylvia. xxx
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Thinking of everyone during these uncertain times and oh so challenging times with far reaching implications for many people. We are all in the same boat and we can only do the best we can - wait and watch to see how things unfold. We must look after ourselves and practice social distancing and stay away from crowded places - it is so disturbing.
For those going through chemo - wishing only the best for you.
Sylvia - so glad that Raymond is improving - what a nightmare you have been through.
So grateful for each and everyone on this thread. Look after yourselves!
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Hi Helenlouise,
Everything's crazy here too. Our very own overgrown schoolboy Boris Johnson has just discovered that the health service is tragically short of respirators, so he's asking manufacturing companies to drop whatever they're now making and switch to producing respirators instead. He's jokingly called his plan 'operation last gasp'. Just when you thought he might now want to reinvent himself as a grown-up.
I'm sorry to hear that your dear friend and adopted mum is dying. Although she doesn't have family nearby she does have you, a devoted and caring friend who is as close to her as a daughter. That must be a great comfort.
I do hope that your port settles down enough to be used on Thursday. Good luck with your chemotherapy and the icing. Fingers crossed that the side effects are minimal this time.
We have to hope that people begin to understand that coronavirus is not just ordinary flu. A lot of people here remain in denial. They continue to travel, go to social gatherings and ignore the need to behave responsibly, while others have gone into a shopping frenzy and stripped the shelves.
Keep safe and well.
Love,
Gill xxx
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Hi adagio,
Yes, it really is a question of watch and wait. None of us know how this is going to pan out. People need to follow the guidance as set out by our senior scientists and medical advisors and stop playing Russian roulette with their own and other peoples' lives.
It's a challenge, but we will get through this. It's very frightening and it's looking fairly grim at the moment. Who knows what will ultimately come out of this horrible time we're all going through? Maybe communities will pull together, maybe people will become less self-centered, less concerned with money, power and status. Just a thought. It's an old adage, but rings very true right now - 'prepare for the worst, hope for the best'.
Keep well and stay safe.
Love,
Gill xxx
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Yes Gill, I agree - plan for worst and hope for best. Our hospitals have brought in a two patient visitor rule whereby the patient nominates two people and they are listed as the only ones to visit. Awful for all concerned but makes sense. In palliative care where my friend is they have said for those about to die too hard but today they had to ask people with children to leave. It’s not just about the I’ll but our front line health workers. Will be interesting to see how the cancer Centre implements this tomorrow.
Take care everyone. Xx
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Update. Was at hospital for 6 hours today. Got to see my dear friend prior to going to hospital. When I arrived I got the call that she had passed. A very sad relief. Chemo went well with no overt reaction. Yay! Long day followed by phone calls to those who I needed to advise. On to the farewell stage.
Still quite wired on the steroids but ready to try sleep having been up since 4.00. So next week which is paclitaxel only. infusion time should be three hours. Whilst the treatment plan is intensive the side effect should be reduced. Downside is that the chemo state is constant with respect to bodily fluids etc.
For me this is nowhere near as daunting as first line of IV chemo just hope the body behaves and does respond. For now the cancer hospital rules haven’t changed yet as they always had a two visitor rule and trust anyone in chemo knows not to come or bring a visitor if unwell.
Wishing all well and take care. We need to prevent spread and slow the infection rate so the global and local systems, especially emergency service, can cope. Xx0 -
Dear Helenlouise,
You described the passing of your friend as a 'sad relief' which seems to me to be a very good way of expressing your feelings. You'll always know that you were there for her right up to the end of her life when she needed you most.
Glad that the chemo went well and nothing of any immediate concern happened. Hope your port is up and running and is becoming much more comfortable. You must be physically exhausted and emotionally drained after the day you've had. Good luck with getting to sleep after the steroids. I hope you managed the icing, it's quite a performance and with long chemo sessions and all the water you're supposed to drink, loo breaks are inevitable.
Michael and I are doing our bit to slow the spread of coronavirus. We're working from home for the foreseeable future and when we get bored with that, we'll be painting the house, gardening, or doing a huge jigsaw that my daughter bought us for Christmas.
Good luck with you next chemo, hope it goes as well as it did today.
Much love,
Gill xxx
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Hi, Sylvia
There is a lot to catch up on! I am just so glad that Raymond is better, and his timing was perfect to get out of the hospital before this awful virus showed up. That is quite a surgery to go through and I'm happy for both of you that it's done.
Did he have clogged arteries? You say he did not have high cholesterol. I think heart disease is the most common disease among humans, my dad died of a sudden heart attack. He was 68 and never smoked or drank alcohol, he was a farmer so he got a lot of exercise. There's no rhyme or reason to it sometimes.
Then there's the coronavirus: I think everyone is flipping back and forth between scared to death and thinking it's all a big scam. Landing somewhere in the middle and just being in a state of stress all the time. Life as we know it is over for now, Restaurants are either closed or only doing carry-out. We are supposed to stay home and there is nowhere to go anyway. The economy is shut down, and if a bad actor was trying to destroy half the world he is doing a good job. It's just awful. A sliver of light came today when we were told that some of the older medications were very good candidates for using against this virus. Our FDA is going to fast-track clearance, and we are going to find out very soon, we are told, whether or not these drugs might work. It sounds like the first drug tried will be chloroquine, a drug used for malaria. Hopefully something will work, the vaccine takes way too long to be ready. I'm trying not to get too hopeful, but I do like hope!
I really can't believe this is all happening, it's surreal. I do stay home, I go to my farm since nobody is there I don't have to worry about staying away from them. Our grocery stores are open, that's about it.. I watch TV every night to get the latest news, it is a rapidly changing landscape with this evil virus. Everyone involved must be exhausted, from the President on down.
I do hope you will be very careful, and stay well. I think of you both often, and I really regret that I can't make my trip to UK this year and see you. Talk to you later,
Love, Mary
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very sorry helenloiuse, one day at a time. Hoping you get through chemo with minimal side effects 🙏
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Hi, Maryjv
I am both glad and sad you had to stop chemo, I hope you don't worry about it too much. We all do what we can and chemo is definitely tough and hard on our bodies. Just remember it was also being hard on the cancer, that's always a good thought. I also hope you get to do surgery but with a new case there who knows what will happen next. How about this life in the USA post-virus? It's just crazy now. I hope all can go smoothly for you and you can be back home to recover. Hope you have lots of groceries and toilet paper!!
Love, Mary
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