Calling all triple negative breast cancer patients in the UK
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Hello Gill,
Thank you for your latest post.
Where I live is not a retirement complex. It is a complex for all ages and there are no special facilities for the elderly. It is not like the McCarthy and Stone complexes for the over 65s.
When things get back to normal we have decided to take a taxi to do our shopping in our own local Tesco store in Exmouth which is just over a mile away from where we live. We are friendly with a lot of the staff there and miss going there. The goods from the on line shopping come from the big store in Exeter and it is not as good. We also want to support our own store.
Like you, I do feel for the people going through breast cancer treatment at this time. I think we are all thinking about Marias, Maryjv and Helenlouise at this particular time and supporting them as much as we can.
Thank you for your kind words about Raymond. He is doing well after just nearly six weeks since surgery. It is a pity that Boris has rationed walking to once a day. After his latest speech about allowing shopping, doing it as infrequently as possible, and going on line to do it, the Tesco on line shopping crashed! As for the NHS we would not be in this absolute panic if we had not had to suffer ten years of Tory cuts and when Boris says "Our NHS" I feel quite sick. Back in 1948 the Tories and doctors were against a National Health Service.
I agree with you that we need to focus on breast cancer and look for good news.
Have a look at what I posted to Mary about the coronavirus forum that I found under active topics.
That is about all for today.
Sending best wishes to you and Michael.
Love.
Sylvia xxxx
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Hello everyone,
I was just having another look at what has appeared to do with the coronavirus. If you go to All Topics and look under Announcements, there are several headings that you can click on and get lots of information.
If you do follow Chris Woollams from Cancer Active, do have a look at his recent email.
Wishing everyone the very best.
Sylvia xxxx
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Hello Sylvia,
I hadn't realised that your complex comprised all ages. Couldn't some of the younger, less vulnerable residents volunteer to do some basic shopping for those without transport? This is what's been organised in our village. It doesn't help much if the supermarket shelves have been stripped, of course. We've been using local farm shops.
I've been looking at the coronavirus forum. Some patients are having to make very tough decisions about whether to continue with chemotherapy during the pandemic. I also noticed that someone who had chemotherapy some years ago mentioned that her immune system hasn't yet recovered. Someone else mentions Neulasta helping immunity to recover during chemotherapy. Unfortunately Neulasta doesn't always work, as I discovered. It did help the first and second time I developed sepsis, but became less and less effective with near disastrous results after by final chemotherapy cycle. I have no idea what my immunity is like now, a year after my final treatment. I had assumed I was back to normal but the hospital here doesn't test for it once chemotherapy has been completed. The UK doesn't provide much aftercare at all once patients are out of chemotherapy. America and Australia seem to offer much more.
I was horrified to learn that the Boris Johnson has decided that the UK will not be joining the EU in its scheme to procure ventilators and other equipment needed during the crisis. This ridiculous decision will cost lives. It's a miracle that our dedicated health service staff still turn up for work every day with Matthew Hancock and Johnson's statements becoming more bizarre and untruthful every time they open their mouths. We're in for an interesting few months!
As always, keep safe during this worrying time.
Love,
Gill xxx
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Hi Marias and Helenlouise,
I do hope that your chemotherapy goes well this week. It's hard enough needing treatment in the first place, but suddenly everything just became more complicated. I'll be thinking of you both and keeping my fingers crossed that Marias' hospital is properly organised this time.
With my very best wishes and love,
Gill xxx
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Hi Maryjv,
The best of luck with your surgery on Friday. I found surgery to be the easiest part and I hope you will too.
Love,
Gill xxx
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thanks Gill! Thinking of you all at this most worrisome time. My plastic surgeon called to let me know all reconstructions are on hold here in San Antonio...surgery on Friday will be mastectomy and reconstruction surgery to be detemined! As of yesterday, we have 69 confirmed cases, please stay safe everyone🙏
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Hi Maryjv,
We now have 45 diagnosed cases of coronavirus here in Norfolk. People seem to be behaving very responsibly and staying in, except for daily exercise and essential shopping.
Mastectomy is over so quickly, mine only took one hour and 15 minutes from entering the operating theatre to waking up in the recovery room. No tubes, no pain whatsoever and a feeling of huge relief that I was free of the thing. I didn't have reconstruction although it was offered. My surgeon says that I have up to seven years to change my mind. You will have the opportunity to heal properly and fully recover a little from the damage that chemotherapy has done to your immune system before undergoing reconstruction surgery. I'm sure you won't have to wait long.
I'll be thinking of you tomorrow and wishing you a very speedy recovery.
Love,
Gill xxx
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HI Gill
I'm glad you responded about the immune system subject I had brought up a while ago. This is something that I suppose I had taken for granted would return in time. But does it? I think I read the same letter you did on another thread about CV, where a poster said her immune system had been destroyed by chemotherapy many years ago. This was followed by several posters declaring that their immune systems were fine and had returned to normal. In your case, you are about one year out from your many difficulties during chemo right? In my case, a year after chemo I felt better but definitely not all that strong. Now, about 5 1/2 years after chemo I feel quite well except for many aches and pains and constant sinus and allergy problems. So I am assuming my immune system is better as well.
It's just something I had taken for granted until I realized my step-children, and some of my friends, think of me as quite fragile, and liable to catch something. I have had blood tests, and the bloods have been normal.
When I was hospitalized after my first chemo session, they began giving me Neulasta on the third day and two days later I was feeling quite well. After that, they gave it to me on the day following chemo and I got along allright.
Hope you are well hunkered down in Norfolk. My forsythia is blooming, and the lilac bushes are getting leaves. The grass is shaggy and the pollen is flying, it must be spring. Spring says "Pandemic, what's that? I am here anyway!"
Love, Mary
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HI, Maryjv
I wanted to chime in on mastectomy subject. I thought it was definitely the most tolerable part of the cancer treatment. I had one breast removed, and no reconstruction. I spent one night in the hospital and went home with a paper showing the exercises I should do. I did the exercises sporadically and I want to tell you that the exercises are important and I did not do enough. If you do start on immediate reconstruction, I am not sure about exercises in that case. Also, make sure you are not getting the textured implants, you may have been told about this and I doubt they are using them now. My DIL used them and now she has to have them taken out because they have been shown to cause problems later. Her surgery was supposed to be this week but has been postponed too, because of CV cases.
Maryjv, I wish you the best of luck, my DIL says it's very helpful to have a remote-powered recliner since after reconstruction you are limited in activity for a while. In fact, I gave her mine.
Be very careful at this time, Maryjv. I wish you the best of luck!
Love, Mary
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Thank you all! I was just told surgery will be performed outpatient and no hospital admission...hoping for a speedy recovery and time to heal at home...stay safe ladies!!! 🙏❤️
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Hi Mary,
My white lilac will soon be in bloom and the forsythia is particularly good this year, roses are full of new shoots and my winter pansies have decided to flower again and are full of new buds. So, it's definitely Spring. As the garden centres have closed, I've ordered all my seeds online and they should have been posted by now. However, seems like everyone else had the same idea and I've just been informed that due to unprecedented orders, my seeds and garden ready bedding will be delayed. I don't know how long for or even if anything will arrive at all.
I've just had a letter from the NHS letting me know that I'm being classed as vulnerable. For the next 12 weeks I cannot go out for my daily walk, collect essential shopping or collect my meds. Someone has to do this for me and leave it outside my door. I have to keep a 2M distance between Michael and myself unless he stays isolated too. My house and garden will look like something out of a glossy magazine by the time my incarceration is over.
Like you, I find that many people treat me as though I'm still in delicate health, people in the village and at Church especially. Close friends and my children not so much. The brain fog is very persistent and my words still have a habit of coming out of my mouth in the wrong order, so I sometimes sound mildly eccentric. Otherwise I'm fit and well but tire more easily.
There's no chocolate in the house unless I crack open one of the grandchildren's Easter eggs - which is a definite possibility. It's either that or cracking open a bottle of something. While having chemotherapy people kept coming to the door with flowers and wine which was lovely, but I don't really drink except on special occasions, hence the wine rack and cupboards are full.
Keep well Mary hope the sun carries on shining and your lilac bursts into flower. Ignore the shaggy grass, it's good for the wildlife.
Love,
Gill xxx
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Hi Maryjv,
Hope everything went well and that you're now recovering in the safety of your own home.
Gill xxx
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Hello Maryjv,
I just wanted to wish you a speedy recovery.
It is probably for the best that you do reconstruction at a later date. It is not something that I ever wanted to do but I do remember my breast cancer surgeon telling me that a mastectomy surgery was not considered major surgery and that it would take about 45 minutes, but that if you opted for reconstruction at the same time it made the surgery much longer.
Make sure you do your exercises. Back in 2005 when I had my mastectomy patients were kept in hospital for five days until the drains had completely cleared, but nowadays it is probably just an overnight stay. I do remember the physiotherapist coming to see me the day after surgery and instructing me about exercises.
You have the surgery behind you now and that is good.
Sending you love and best wishes.
Sylvia xxxx
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thank you ladies! I am home resting, was actually performed outpatient and I was home yesterday afternoon! Crazy! I have two drains and a wound vac...feeling good just resting and moving around. My surgeon came out and told me there was no cancer in the lymph nodes so now I go see him in two weeks for pathology results!! Keeping you in my thoughts and prayers🙏
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Hello everyone,
Thank you for your wishes.
Seems I’m going to lose a few days each treatment round. Things have been quite hectic and I am definitely on chemo. Interesting how different this seems.
My second round was quicker as it was taxol only. Four hours at the hospital. I am glad to have a week off. My nose is sore and bloody, my hands and feet a little more tingly than usual, my mouth tender, taste is weird and lips feel like I have cold sores about to break. Aside from that I'm quite well.
I have been awake at all hours but interestingly doing a lot of work (class prep, marking, pd) instead of reading BCO. The MO has me halving the steroids for next dose so hopefully they will still work and I won't be as wired for the few days around the infusion. Port has settled but still protrudes a lot, so very glad it is not in my arm. Hair is going to go soon (just a little tug and it comes out) and I have wigs, scarves and hats ready to go.
Covid 19 is causing issues here in Australia but things are not as dire as other places around the world. It is like a bad dream. As I live in a rural city things aren't quite as crazy (yet). Treatment at the local cancer center is geared up to deal as best as they can. Bit sad to think going for chemo will be a social event of the week
Isolation is not new having completed IV chemo before. I am just not use to EVERYONE else having to do the same and ALL the time. It's unbelievable what is happening!Maryjv, glad to hear nodes are clear! Wishing you a speedy recovery.
Best wishes to all in these challenging times xxx
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Oh helenlouise, you are such an inspiration and warrior! Glad they adjusted the steroid dose, I also struggled with the lack of sleepiness along with high blood sugars and pulse rate! hoping you feel better wit the adjustment! 🙏
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Hello Helenlouise,
Your side effects sound fairly horrid, but apart from a sore and bloody nose, imminent cold sores, tingly hand and feet and a weird sense of taste, you're doing well!!! No nausea is good. Hope that halving the steroids will help you to sleep. Full of admiration that you're getting on with marking and prep, especially when no-one knows when normal working will be resumed.
Lots of mixed messages from UK Government regarding pretty much everything connected to Covid-19. Over 1,200 people have died and more than 19,500 are infected so far, poor Italy and Spain are so much worse. I really hope that Australia fares better than Europe.
Keep safe and well and I suppose I should add 'sane' as isolation begins to bite - I had to laugh when you said that chemo had become a social event.
Hope your next treatment is straightforward and you continue to do well.
Love,
Gill xxx
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Hello, I trust you all stay well protected. They continue to recover from their surgeries and their chemotherapy try. the coronavirus has us all in Jake I trust we will get ahead in the best way. a hug for aall
Abrazos
Marias
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Hang in there, Everyone! PM us if you need additional help!
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Thanks moderators. Hope you keep safe and well too.
Gill x
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Hi Marias,
It's good to hear from you. Yes, we're all in the same boat here, feels like being in prison, quite a pleasant prison, but still locked up for the the next 12 weeks - at the very least. Hope you have someone to deliver food and medicines to your door. I wonder if you're managing to travel to hospital for treatment?
This frightening time will pass eventually, as all things do. In the meantime, keep safe.
Love,
Gill xxx
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Hello Moderators
Thank you for popping in during these difficult times.
I am sorry I did not get to answer your PM that you sent some time ago. I have been fully occupied looking after my husband.
Sending you best wishes.
Sylvia
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Hello Marias,
It is always good to hear from you. I know there are troubled times in your country apart from the coronavirus.
You are a woman of great strength and I know that you will get through everything.
I always look out for any news about Colombia.
Abrazos.
Sylvia xxxx
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Hello Helenlouise,
I wanted to let you know that I am thinking of you and hope that everything will improve with your chemotherapy.
Keeping busy with your work is a good idea.
One of my best friends went on holiday to Australia to visit her daughter some weeks ago and has not returned so I suppose she must have had trouble getting a flight home. She sent me a pretty card showing a lovely display of Franjipanis by the artist Ray Reeves.
Thinking of you and sending best wishes. You will get through this.
Love.
Sylvia xxxx
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Hello everybody. I trust that everyone is stable and well with this closure. Obviously it has not been so hard for me because a while ago I feel tired and I have no social life. Here we are in the south of Cali from where the news has come out that it is the area with the highest number of infected people because it is an economic class area. Many people came from abroad infected and have been infecting those close to them. so the medicines and the food bring her to the goal my brother goes down the 4 floors with gloves mask once he gets home he takes off his shoes we put them in a little bleach and that's it. We wash vegetables and other foodstuffs with soap and water, as many as possible. we are a crazy and irresponsible country that now I hope they realize that they have dedicated themselves to choosing politicians who fatten their wallets privatize health and education. in Colombia there are 12 thousand hospital beds for 50 million people. I trust I will not get sick because it would seem to me a deplorable and sad situation to die alone drowned and in circumstances of no care.
now I am taking xeloda for 14 days and resting 7. I got another provider who is not in a hospital so as not to be close to so many people. They were also going to find out if they can send her home. Tomorrow I have to take creatinine and blood count tests. the oncologist called and said that the care was going to be virtual. I hope everything goes well and I don't have to go to the hospital.
Take care.
Abrazos
Marias
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Hello Marias,
Your Government is an utter disgrace, no humanity whatsoever. It is no surprise that it fails to provide proper, well organised care for those who are sick. The chaos will become much worse during the pandemic. No doubt your corrupt leaders will make sure they are safe though.
I was very pleased to hear that you have changed your provider and won't have to sit in a crowded hospital waiting for your cancer medication any more and also that your oncologist will provide virtual care from now on. You seem to be doing your very best to stay safe. I'm glad your brother is helping you.
London has three times the Covid-19 infection rate of the rest of the UK and one London hospital is now having to make choices about who has life saving treatment and who doesn't. Our Government continues to lie about providing coronavirus testing kits to hospitals and the number of National Health Service staff members who have been tested. It is also telling us that health workers have protective clothing, goggles and masks. None of this is true and hospital staff are very angry but continue to risk their lives for their patients. Hospital workers have a strong sense of duty, our Prime Minister has no sense of anything except himself.
Despite your appalling Government, you will come through this horrible time Marias. You seem to be a very strong and determined woman who fully understands the risks of coronavirus and acts quickly to minimise them. Good luck and keep letting us know how you are doing and what is happening in your country.
Love,
Gill xxx
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Hello Marias,
I have just read your most interesting post. I am always interested to know what is going on in your country.
In the UK I think we are slowly getting used to staying at home. We can go out to buy food but we are asked to do it infrequently. We can also go out to get some exercise and to go to the pharmacy. We are advised to shop for food online but this has caused overuse. We have lots of problems in our NHS because the Conservative government underfunded it during ten years of austerity. The worse cases of coronavirus seem to be in London and other big cities with high populations.
I suppose we just have to get through the crisis.
I can see that you and your brother are being very careful in your daily routine.
I think that in a lot of countries politicians are not interested in ordinary people and there is one law for them and one law for the rest of us. We have over a million children living in poverty in this rich country of ours and many thousands of people living on the streets. I do not think inequality will ever change.
I do hope all will go as well as possible while you are taking Xeloda for fourteen days and then having a rest for seven days. I do hope that you will get good results from your creatinine and blood count tests.
Here in Exmouth our doctor who is looking after Raymond is also doing everything on the telephone. He is making good progress and this morning we are going to go for a walk as the sun is shining.
Thinking of you.
Love.
Sylvia xxxx
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Hola marias
Acabo de leer tu publicación más interesante. Siempre estoy interesado en saber qué está pasando en su país.
En el Reino Unido creo que poco a poco nos estamos acostumbrando a quedarnos en casa. Podemos salir a comprar alimentos, pero se nos pide que lo hagamos con poca frecuencia. También podemos salir a hacer algo de ejercicio e ir a la farmacia. Se recomienda comprar alimentos en línea, pero esto ha causado un uso excesivo. Tenemos muchos problemas en nuestro NHS porque el gobierno conservador no lo financió durante diez años de austeridad. Los peores casos de coronavirus parecen estar en Londres y otras grandes ciudades con altas poblaciones.
Supongo que solo tenemos que superar la crisis.
Puedo ver que tú y tu hermano están siendo muy cuidadosos en su rutina diaria.
Creo que en muchos países los políticos no están interesados en la gente común y hay una ley para ellos y una ley para el resto de nosotros. Tenemos más de un millón de niños que viven en la pobreza en este rico país nuestro y muchos miles de personas que viven en las calles. No creo que la desigualdad cambie nunca.
Espero que todo salga lo mejor posible mientras esté tomando Xeloda durante catorce días y luego descanse durante siete días. Espero que obtenga buenos resultados de sus pruebas de creatinina y recuento sanguíneo.
Aquí en Exmouth, nuestro médico que cuida a Raymond también está haciendo todo por teléfono. Está haciendo un buen progreso y esta mañana vamos a dar un paseo mientras el sol brilla.
Pensando en ti.
Amor.
Sylvia xxxx
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Hello Mary,
I have missed you on the thread and I am hoping that all is well with you over there in the USA. I know you may be busy but just let me know that you are alright. You have been such a good friend on my thread for a long time.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I was talking to a friend of mine this week and she told me about a good website to get information about the coronavirus, covid-19. The link is https://www.cebm.net/
The CEBM stands for the Centre for Evidence Based Medicine. I have printed off the most recent article dated March 30th and entitled COVID-19 the tipping point?
On another point at the start of the week on BBC Radio 4 news there was mention of research on a blood test that would allow most cancers to be detected in their earliest stages. I do not know how long this will take to become available and I think it has been drowned out by the coronavirus, as has much of the other news.
How is everyone getting on in self isolation?
Best wishes
Sylvia xxxx
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