Calling all triple negative breast cancer patients in the UK
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hi everyone.
was any of your chemo appointments cancelled due to low white blood cells. My mums was cancelled tomorrow and she is in tears because she only has 3 left and wants to get them out of the way and is considering this a step back. Seeing her sad is breaking my heart but they said it is not safe to do it tomorrow and she has to wait til next week to see if the white blood cells neutropenics I think they are called are back to normal.
Any advice how to get them back to normal quicker0 -
Hello Gill,
I have nothing much to add to your last post. Everything is so hopeless. We really need a General Election.
I am not surprised about the figures for Covid deaths in the UK and I think they are probably much higher than 200,000. The way people are behaving is irresponsible and the coronavirus will continue to spread. The NHS is in a state of collapse. I think we have a lot of people in poor health in this country and there was mention today about concerns over the poor health of the post-war baby-boomers generation, so we are talking about those born between 1945 and 1965. I do not know the details.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
I was glad to read that you have an ultrasound scheduled for next Tuesday. I hope all goes well with that. I hope you will not have to wait too long to see the breast cancer surgeon who will look at the ultrasound result and that you will then progress to surgery. This will all soon be over for you.
I was interested in what you had to say about your friend who got Covid, was put on Paxlovid and was back to work the next week. I am not sure what is happening with the treatment of people who get Covid here. I know some people that have it, but they just seem to be testing and then waiting for it to go and just taking paracetamol for headaches and things to relieve sore throat or cough. Those in hospital may be having different treatment. I think some people may be put on steroids.
The chaos continues here. I just think we need a general election and a different political system. I think the politicians take the public for fools.
That is about all.
Love and best wishes.
Sylvia xxxx
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Hello Kath,
It was nice to hear from you and thank you for all the photographs.
There you are in Australia struggling through the coldest winter for a while and here we are in the UK getting amber warnings about the highest temperatures on record coming next week. Raymond and I are dreading it. There is bound to be chaos and people getting ill from it. This is not good news with the NHS barely coping. A&E is overwhelmed, the ambulances are queueing and in short supply, there are staff shortages and Covid numbers are getting higher and higher.
I was glad to read that you had a lovely trip to the UK and Ireland for a month. It is true that in general people are acting as though Covid has gone away, but Omicron 4 and 5 is very much present and very contagious. People here do not seem bothered.
I would be very interested to know what you made of this country, especially England.
Take care and do not overdo things.
Love and best wishes.
Sylvia xxxx
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Hello Kelsey,
It was nice to hear from you. When you are going through chemotherapy, you usually have a blood test a day before you are due to have an infusion. When you arrive at the hospital for your appointment you are told the result of your blood test and if there are problems, such as low white blood cells, you may be told that you cannot proceed with the chemotherapy at that time. I would think now you would have a blood test and probably be told the result before going to the hospital. I am surprised that your mother was not offered Neulasta or Neupogen to deal with low white blood cell problems when having chemotherapy.
The hospital will want this to normalise before going to the next treatment. You should ask about the Neulasta/Neupogen. These are brand names for filgrastim or pegfilgrastim, a blood growth stimulant.
Tell her not to be upset. I think the hospital will come back to her pretty quickly. Tell her not to look at it as a step back. The white blood cells have to get back to normal.
When you are on chemotherapy you cannot take any risks. Tell her to look after herself, eat a good mixed healthy diet and stay away from raw foods and seafood during chemotherapy to keep away from infections. With Covid on the increase and very contagious, she should not be taking any risks with mixing with people.
Take care, both if you and be vigilant. Chemotherapy will soon be over.
Sending you love and best wishes.
Keep strong and keep positive.
Sylvia xxxx
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Hello Kath,
Lovely to hear from you, so pleased that you enjoyed your holiday. We're having a long warm Summer here, unlike last year's, so you visited just at the right time. Hope your batteries were recharged for a while.
We're far too complacent about the latest omicron variant here. All restrictions lifted long ago and staying that way. We have yet another new Health Secretary who has decided not to bother turning up for work . He knows he'll be out of a job once a new Cabinet is put in place by whoever becomes the next Prime Minister. Infections are rife and our hospitals are full again. Many members of hospital staff are off sick with covid and the situation worsens every day. Michael and I have never stopped wearing masks, but very few people bother.
Looks as though you have a busy time ahead. Covid is far from over, so good luck with all the planning.
Love,
Gill xxx
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Hello Sylvia,
I think you're right about covid deaths being underestimated - infections certainly are. How do we know the precise number of people infected when tests are no longer readily available? No planning ahead, no-one in charge. It's frightening how far we have fallen, but I don't think a new Prime Minister will be equipped to deal with what's happening to England. We need a General Election and all those involved in corruption, money laundering, accepting bribes etc should be arrested and put on trial - just like anyone else would be.
I didn't see any notices about masks when I visited the hospital yesterday. All the staff were wearing masks, but many patients (especially the younger ones) weren't bothering. Certainly no possibility of social distancing in the tiny room which the prosthetic fitter and I were given. The breast clinic is now called the Boudicca cancer unit. Apparently this is the second anniversary of the Boudicca Appeal and some interesting new equipment is already in place. This includes a Stereotactic mammography system which uses low dose x-rays to help locate a breast abnormality and remove a small tissue sample for examination under a microscope. It leaves little or no scarring and is very effective in evaluating calcium deposits and extremely tiny abnormalities that an ultrasound would probably miss. Just hope that there's enough money to employ the necessary staff. It's a step forward though. Now they need to reinstate the full 5 years of annual breast checks following cancer treatment. I don't feel safe having had just two years.
Weather still very hot here and rain is much needed.
Love,
Gill xxx
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Hello again Sylvia,
Just read in the local newspaper that the Norfolk and Norwich Hospital reintroduced mandatory face masks for visitors/outpatients on July 1st. Those not wearing them should be challenged. Where are the notices? I'm so angry with people who refuse to comply, I'd have challenged them myself had I known that compulsory masking had returned. How difficult is it to wear a mask when you're attending an outpatient appointment? All hospital staff were masked and had to put up with it for their entire shift.
Enjoy the weekend.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
The latest information that I have about the coronavirus is that the Omicron variant BA4 and BA5 are still spreading very rapidly and that 18% of the population is now infected. There is another variant of Omicron that is spreading wildly in India and that there are cases in the UK. This new variant is not being mentioned much but apparently the spike in it is different to the others. I have looked online for information but have not been able to find anything. This new was given a name but it was mentioned so quickly that I could not take it down.
Raymond and I are still being very cautious but others appear to think there is no virus. We are not straying far from home as Raymond walks quite slowly now and neither of us likes the heat. Raymond's allergies are very bad.
As for the government, there is no mention of the coronavirus. The emphasis is starting up about another booster that is going to be offered to 50 and up, but I have also heard about vaccinating everyone from 5 up starting with the most elderly. During the interview I listened to it seemed that it was not known what vaccines would be on offer, but there are new ones. Raymond and I have not had the fourth vaccination and we probably will not have the fifth one. People are still dying from the vaccinations.
In this country all the emphasis is on the leadership of the Conservative party and from what I have seen of it the whole thing is a farce. We really need a general election and we really need a new Brexit referendum. There is no answer to the Northern Ireland Protocol. Northern Ireland is a part of the Republic of Ireland and we should never have taken possession of it.
The challenge this week is to get through the heat problem. Everything is such a panic in this country. I think that the South West will not be as affected as elsewhere but I do long for much cooler temperatures and rain. The grass in the grounds is now brown and the flowerbeds could do with a good soaking.
I hope you have a good week. Keep safe.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I don't like this hot weather at all. It was 38C in the car today. Only took a short essential journey, but it was really too much. There were very few people about, but a few men were shirtless and some teenage girls wearing very little. Clearly the skin cancer message isn't getting through.
Talking of skin cancer, I seem to remember reading that cancer patients who have had radiotherapy are more prone to melanoma. I've certainly known women who have had breast cancer treatment, including radiotherapy, who've developed skin cancer. I wonder if this is the reason that radiation is no longer routinely offered to patients who have undergone mastectomy? I'm astonished by the number of radiation treatments offered to breast cancer patients in countries with insurance based health systems. Over treatment is probably more of a health risk than under treatment.
I'm not going to be commenting much in the next week as we have visitors from Friday - Monday and I have so much to catch up with in the archive once they've gone home.
England is out of control and Parliament is a free for all, no rules being followed. Nadine Dorries was sitting next to the PM yesterday chanting and singing 'boring' at Keir Starmer. Drunk?
Hope that you and Raymond manage to keep cool and safe.
Love,
Gill xxx
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hi Sylvia, Gill, Sue and all
Yes it is Hot! Here, there and everywhere. It's so miserable and makes me feel ill, and saps my energy. I do have friends that like it, don't know how!
The last two weekends I have reconnected with old friends, one man I hadn't seen in 51 years. Very enjoyable, though the number is outstripped by all our acquaintances and friends and family who are gone.
Our country is also in turmoil. As much as some people despise Trump, they would have to admit that we are in a far worse place now than when he was Prez. Now we have runaway inflation, open borders and high gas prices. We went from energy independence to begging the Saudis for more oil, all to please the climate nannies. As for all the people browbeating us about Covid vaccines, they say nothing about the thousands of people coming across our border not having vaccines. It is madness. There is so much more, but enough, you have troubles of your own. Right now to survive the next two super Hot weeks.
I'm glad Sue is finishing up her chemo, I remember looking so forward to that day but I was so tired by the time it came.
My house redo is finished for the most part, now I'm dealing with aftermath. I'm liking the empty look, I don't really want to put all my things back. There is still dust lurking as well!
I hope you and Raymond are well, my hopes of getting to England soon may have to wait till fall. I read that Heathrow is having a dreadful time dealing with summer crowds and has cut the number of people they will allow in the terminal daily, it's like our Scotland trip difficulties on steroids! I don't want to get into that madness. I am still avoiding crowds when possible.
Hopefully yours, love, Mary
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hi Sue
Congratulations on finishing the chemo, that is such a relief for you. Have you decided what surgery you will have? If you already told us, I'm sorry, I've been consumed with my house remodel for last month and a half, I did everything myself so neglected many other things, I think.
I hope you like your surgeon, that always helps.
How do you like this heat? I don't think there will be any grass left after this heat wave, it's awful.
Well, that's a cheerless subject, so I hope you will just feel better every day and get strong for your surgery.
Talk later, love, Mary
Where did you find your avatar?
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Hi everyone,
It took a long time to get over the last chemo, especially with the added complication of covid. But I'm feeling better now, aside from some lingering effects of covid. This week has been full of appointments. Today, I meet with the surgeon. I already received a call yesterday to let me know that my surgery will be on August 2nd. I'm currently scheduled for a lumpectomy. We'll see today if the surgeon goes along with that after seeing the ultrasound from Tuesday.
We are experiencing so much hot weather. I can barely breathe when I walk outside. I can't imagine how people are coping. I think of you all in the UK as well and hope this heat wave passes quickly. I go out in the early morning to walk a bit. I won't be able to do that over the next few days.
Mary, my avatar came from a Chrome extension called Bitmoji. As a teacher, we were require to learn a lot of unfamiliar technology during the pandemic to keep the kids engaged and to create virtual learning platforms for kids who were learning from home or accessing school work from home. To make our work pages more interesting, I created an avatar on Bitmoji (it's a free extension on chrome) to step up my pages and make them more fun and interesting. Teaching during the pandemic was stressful, but it was a challenge I enjoyed.
Take care of yourselves in this heat. I'm thinking of all of you.
Love, Sue
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Hello Gill,
I did know about the connection between radiotherapy treatment and being more prone to melanoma skin cancer. I did post about this on the thread some years ago when in 2017 I was diagnosed with a melanoma cancer mole on my right arm where I had had radiotherapy on my right side where I had the breast cancer in my right breast. You probably missed these posts because you joined in September 2018. What happened in 2017 was that I decided to have a flu injection after not having had one since 2005 when I was diagnosed with breast cancer. After the flu injection I had a swollen hand and arm on the right, even though I had had my injection in the left arm. I recognised this as lymphoedema and got a referral back to the hospital. To cut a long story short, I went to see a GP about the lymphoedema because my arm was a bit red, so I was concerned about cellulitis. He assured me that I did not have it but said he had noticed a mole on my right forearm and wanted to take a photograph and refer me to the two week mole clinic at the hospital. I agreed to all this. Ironically he said that he did not think it was melanoma! My own GP had looked at it at my request and said she did not think it was anything and to come back in three months.
I went to the clinic, they did a biopsy which confirmed that is was melanoma. They then told me that I needed more surgery on it to make sure they had it all. I then had a third appointment and was told all was clear.
I know that patients going through cancer treatment find the long chemotherapy treatment the most stressful and then say that surgery and radiotherapy are easy. It is true that are short, not usually very painful but they are both dangerous and have side effects. Radiotherapy is quick and easy in so far as what you go through, but there are risks and melanoma is one of them. Patients should be told about this. I was lucky in that my skin did not suffer from the radiotherapy like the burnt skin that some patients have.
With surgery, especially mastectomies, there is the problem of lymphoedema, and this can also be brought on by radiotherapy.
I have read some of the posts in the lymphoedema threads so I know how bad lymphoedema can be. Mine was not too bad. I just did the necessary exercises, kept the arm well moisturised, wore a special sleeve for a little while and then left it off. So far I have had no further problems.
Looking back life since that October 2017, when I had the flu jab, has been quite stressful. Raymond started having problems with his health in 2018 so I discharged myself from the lymphoedema clinic, as I could not cope with both having problems. The team at the clinic understood and said they would welcome me back any time I wanted.
When all this was happening to me I was visiting a friend and neighbour in a home for the terminally ill and she was dying of melanoma cancer which she had been fighting for many years. I did not mention what was happening to me.
There you have my story, Gill. It just shows you that you can do everything right and bad things still happen.
I have now survived breast cancer for just over seventeen years but the possibility of its coming back and the possibility of more melanoma is always at the back of my mind.
Somehow we cancer patients get on with our lives and live normally.
As you say in your post, we do have to be wary of over-treatment, especially where money is concerned.
I am surprised at the number of chemotherapy drugs being introduced and used for breast cancer treatment. I feel there is only so much a body can bear. I know that with my friend who died of melanoma cancer she was given all kinds of drugs and the last ones were immunotherapy ones. They did not work for her.
I saw a bit of PMQs yesterday and I thought Boris Johnson was acting like a complete madman and yet his government seemed to be lapping it up. If they thought so much of him why did they kick him out? I do not think we have seen the last of him. We need a General Election and we need a new Speaker. Bring back John Bercow! People need to decide whether they want a dignified parliament or a circus! What is Nadine Dorries up to?
That is about all for today. Raymond and I are trying to work through a list of things we have to do.
We are in a dilemma about that fourth vaccine. We have not had it yet and do not really want it. We also have a letter about getting flu vaccines.
I do hope you are getting cooler weather and are both keeping safe.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. I am also fed up with the heat and the lack of rain. The grass is so brown and I keep thinking of that great Gene Kelly song and scene in Singing in the rain. Every day I am saying let it rain, let it rain, let it rain! I just hope August is wet and unseasonably cool!
I can identify with your saying your country is in turmoil. Can it really be worse than ours? Like you we have runaway inflation, open borders, high oil prices and ever-increasing food, gas and electricity prices. We have a parliament that is more like a circus and makes me feel ashamed. I do love your expression of the climate nannies. I am sick to death of hearing about climate change and green energy. There have always been weather patterns.
I can identify with your concern about all the people coming through your borders, unvaccinated and probably bringing in serious illnesses and viruses. We have the same problem in our small island but the politicians do not seem to care. Our countries are in a mess and I cannot see any change coming whatever party is in power. We do not want celebrity, so-called entertaining leaders. We want serious rational thinkers and even boring people, so long as they have dignity and fairness at the heart of their policies. We do not want trite and entertaining. Let us get some real people who know how ordinary people live.
I am glad that all the work in your house is coming to an end. Be a minimalist. Remember, you cannot take it with you when you go and it is not fair to leave it to someone else to do clearance.
I do find it hard to believe that it is worse in your country than it is here. The leaders here are so boastful about how wonderful they are and how great this country is but what we excel at is not being able to cope with anything. We are very good at hysteria, world leaders in fact!
That is all for now. Keep in touch.
Love and best wishes.
Sylvia xxxx
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hi Sylvia,
I'm also up in the air about 4th Vax. They are pushing it now, but I also read they are coming up with a new mix this fall for the newer strains. I'm sure they will want us to have that too! I'm thinking it's just going to be one after another, and I'm not sure I want all that. And yes, flu shots will be out soon too.
I read a couple articles saying the vaxes might cause lower immunity. The real problem is, who do you believe? At this point, the "experts" are not sounding so good.
Have some workmen here again today, and it's still hot. I hurt my back a couple of days ago, I was overdoing things, fancy that! Someday I'll learn to follow your advice to take it easy! I'm going to see if my doc can do some adjustment to it. He has some chiropractic knowledge along with his medical license. He is a DO, Doctor of Osteopathy. So he is an MD with extra training.
I'll talk to you later, love, Mary
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Hello Mary,
It was good to hear from you and I do enjoy your posts. Raymond and I really do not know what to do about the Covid vaccines which seem to last only a few months. We have both had three so far, the first two were AstraZeneca and the third Pfizer. We were not given any choice. So far we have not been to have the fourth vaccinations, which seem to be either Pfizer or Moderna. We have heard so much against these vaccines, all negative. GB News on the television have been running weeks of interviews with families of people who have died of the vaccines. They do cause blood clots and many other things, and the Covid causes blood clots, so you are damned if you do and damned if you not. Some of the people who have died have died quickly after the vaccines and others later. They were not elderly people and did not have chronic diseases. A very long report about the side effects of Pfizer was supposed to come out but everything seems to have gone quiet about it. Pfizer wanted to keep the contents of the report secret for 70 years but were ordered to reveal the contents!
The latest Omicron variants B4, B5, are still spreading here and one in seventeen people are now affected. We know too that these variants are spreading rapidly in Japan.
The trouble is people think that Covid has gone and nobody seems to be doing any mask wearing or social distancing.
I read yesterday that the new variant of Omicron is BA2.75 and that it is also spreading rapidly. Apparently there is already a name for the next Covid virus and it is Pi.
I am not surprised that there are problems of spread in the UK because we are not a clean and tidy country. People here are litter-bugs and have low standards. Our government claims to be top notch in the world over most things (delusional?) but does not claim to be the world's greatest when it comes to litter and low standards. We suffer from over-population and open borders but nothing is done about it.
I was interested in what you said about the vaccinations might cause lower immunity. That would not surprise me because strange drugs going into your body will not be doing it any good. I certainly do not trust the so-called 'experts'! These vaccines are all about making loads of money for drug companies. In the Western countries profit and more money than makes sense is the name of the game.
I was sorry to read that you hurt your back. I do hope that you can get some help and that your back will soon be much better.
The thread is very quiet and the whole forum seems quiet. It could be that we have exhausted the conversation about triple negative breast cancer. I think our thread will be very quiet this week. Gill is taking a break because she has visitors and has other work to do. We do not hear much from Kath and HelenLouise and adagio seems to have disappeared. I just hope she is alright.
I just carry on and live the day. I do not like what is going on our country and I despair of all politics. We do not have strong leaders or speakers any more. There is no one to match the likes of Charles de Gaulle and Winston Churchill.
That is all for now. I just hope it rains soon as the grounds are completely parched.
Take care, keep safe, try to keep sane in a mad world and keep in touch.
Love.
Sylvia xxxx
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Hello Sue,
I just wanted to say hello and let you know that I shall be thinking of you on August 2nd when you will have your surgery.
It is good that you have made it through chemotherapy and that you are recovering from Covid.
Take care.
Love.
Sylvia xxxx
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Hi Sylvia
I just came upon this thread as I was looking for connections between breast cancer and melanoma.
I had triple negative cancer in my left breast, treated 2012/13 with mastectomy followed by chemo and radiation.
I have a longstanding mole on the back of my left shoulder which I suppose was in the field of radiation. A couple months ago I thought it felt different when I ran my hand over it, and when I checked in the mirror I was surprised to see it was changing from light brown to dark/black.
I had it removed for biopsy a couple weeks back and it appears to be stage 1b melanoma.
Initially I was like, ok it's early stage, very treatable but gradually my mindset has moved to oh FFS! I have CANCER. AGAIN!
Of course I'm now an expert on melanoma 🤣, and when my dermatologist told me I needed a wide local excision and then he'd see me in 6 months, I asked if SLNB was a consideration.... well he shot me down in flames. "Totally unnecessary, why would anyone do that? There's not one person in Alberta who would do Sentinal Lymph Node Biopsy on this lesion!"
Luckily he said he was referring me to someone else for the wide excision. Luckily that person punted me straight back and said they needed to refer me to our Cancer Centre to discuss SLNB!!!
I'm now rattled AF. I already had lymph node dissection in that axilla, and mild lymphedema as a result, so there's that! I'm waiting for a call from the Cancer centre. I'd hoped this would be a quick excision and 6 monthly checks, like my dermatologist stated, but now it feels so much more serious, and scary. I know the chance is small that it's in the nodes .... but they said that about my breast cancer as well. Turned out stage IIIa.
Just wanted to vent really, to people who would get it. I'm not a UK resident, but a British Expat, living in Calgary, Alberta, Canada.
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Hi Morwenna,
Sorry to hear about your melanoma. There have been several posts and discussions about melanoma after radiation. Sometimes the posts are hard to find, but stay tuned. Everyone is so friendly and supportive and helpful here!
I am awaiting surgery for my TNBC right now. I've just finished chemo in June. I will need to have radiation after the surgery. It makes me very nervous, but this whole process has been difficult, as I'm sure you know.
I also tested positive for Covid in early July, which was really awful--trying to recover from the last chemo and covid at the same time. But I'm much better now. Just trying to get through this last week before surgery in August.
I'm from New Jersey, USA. So wherever you may be living, you are welcome here. The other threads that I've explored are not as helpful or active as this one. I'm thankful to have found this thread!
Sylvia,
I had 3 shots, all Moderna. We were given the choice in the beginning for the first 2 shots. I had read so many bad things about Pfizer, that I went with Moderna. I had a fever and headache with the second shot and the booster. It lasted one day and I was in bed for the whole day. I am not excited about another shot. I've been in bed enough! And who knows how another booster would affect my body now. My husband also got Moderna and has been thinking about another booster. But he hesitates. He had no reaction to any of the shots and when he contracted covid, he had very mild symptoms. It's like everything else, each person is different.
But you're right, the idea of getting yet another shot--and I know there will be more down the line--is frightening. The numbers have been rising here in the US and we have the same problems with people thinking Covid is gone. But if you look at the hospitals, it's obvious. People are afraid and in denial. They want covid to be gone so they just say that it's gone. That doesn't make it true anywhere but in their own mind. But enough people say it and refuse to wear masks. They want to believe anything that will aid their comfort zone. I've been the only mask when I go out on rare occasions to the doctor.
Stay well everyone!
Love, Sue
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I just wanted to welcome you to our thread and to say how interesting I found your post. I was interested to read, also, that you are living in the Province of Alberta in Canada and that you are British born. My husband and I spent 17 years in Canada, in Montreal Quebec, and Ottawa and London Ontario.
I was interested to read about your triple negative breast cancer and your treatment. All of it is almost identical to my own. You can see all this on my details.
I am now over 17 years post-diagnosis but never take anything for granted.
I was really shocked in 2017 when I had a recurrence of lymphoedema after a flu vaccine to find that the GP was more interested in the mole on my right forearm. I had the mole removed and the scar on my arm is barely visible but there is a slight indentation. When I had had the two surgeries on this right are I was told that all was clear. I did not worry at the time, but with all the recent news about radiotherapy and melanoma, I now feel a bit anxious about it all. I do think that we should be better informed about such risks before we consent to these procedures. I had three weeks of radiotherapy with boosters and nobody said anything.
I have to stop now but I do want to talk some more with you about what to do. I hope to get back to you later today. I would say that if I were you, you should get the mole removed as soon as possible.
It is a real pleasure to meet you.
Best wishes.
Sylvia xxxx
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Hello Morwenna,
I am looking at your post again and picked up that you had had the mole removed for a biopsy a couple of weeks ago and have been told that it appears to be stage 1B melanoma. I was told nothing like that. After the first biopsy I was merely tod that I needed a second surgery to go a bit deeper. This was done and I was told everything was fine. When the second one was done the nurse gave me a supply of antibiotics to take with me in case cellulitis occurred on the right arm in question. Cellulitis is a dangerous infection that you can get when anything is done on the surgery arm affected with lymphoedema from breast cancer surgery.
I do not know anything about sentinel lymph-node biopsy on this surgery. I had seven lymph-nodes under the arm removed when I had my mastectomy and only the first node, the sentinel node, was affected.
I shall be very interested to know how you get on with all of this. Please make sure that you do need something done with the lymph-nodes. Nothing like that was ever mentioned to me back in 2017. My understanding is that the stage is worked out depending on the size of the tumour and yours, like mine, at 6cms+ would be considered large. I know that I had no choice but to have a mastectomy. I was not told the stage but just the grade, which was 3. Most triple negative tumours are grade 3 but not all.
I hope this helps. I was wondering how long you have been in Canada and if you chose to go to Alberta. My husband and I went to Canada at the beginning of 1977 and came back in November 1993, so we have been back here a long time.
Take care and try not to worry.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
I am out of time so will reply to your post tomorrow.
Love.
Sylvia xxxx
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Hello Sue,
I was interested in your experiences with the vaccine and to know that you had three shots with Moderna. It looks as though we cannot win with these vaccines and that whether you have AstraZeneca, Pfizer or Moderna, there are side effects. Like you, I am very reluctant to have that second booster, which will be followed by flu vaccinations and yet another Covid vaccination I fear. The latest thing I heard was that the monkeypox has now been declared a pandemic and that the smallpox vaccination will be used to deal with it. We have too many people travelling all around the world and we do not know what they are spreading. Controls are inadequate and we have too many people coming through our borders illegally. Basically the world is overpopulated and everything is overwhelming.
I agree with you that people want Covid gone so they are saying it has gone.
That is about all for now but remember I am thinking of you and wishing you well.
Love.
Sylvia xxxx
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Hi Mary,
Pleased that your refurbishment ordeal is over. I like the minimalist look, so much easier to keep clean. Difficult to have clean lines and light colours in my old cottage, just doesn't look right.
I'm having to arrange for some eco person to come and do a bat survey in the attic. If we have bats and I think we do, then I won't be allowed to have the woodworm exterminators in to spray. Perhaps I shall just have to wait until the beams supporting the roof are eaten away and the roof falls in? Perish the thought that a few very common pipistrelle bats are made temporarily homeless. We live in a mad country and it's becoming madder by the day.
Keep safe and well.
Love,
Gill xxx
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Hi Sue,
I'm afraid that covid side effects can linger for several weeks or even months, especially the cough and tiredness. It must be difficult to distinguish covid effects from those of chemotherapy. My chemotherapy induced dizziness and tiredness has stayed with me and I've found that this hot weather hasn't helped at all. I feel older than my years and am beginning to wish that I hadn't had the last couple of rounds of chemotherapy. Apparently, the first cycle of taxol is by far the most beneficial, the others are just a small boost.
Good luck with your surgery, you'll probably be pleasantly surprised by how painless and straightforward the process is. General anaesthetics have improved so much in the last few years and are very, very safe. I would have no qualms about going through surgery again - can't say the same about chemotherapy, that was traumatic from beginning to end. Well done for getting through it.
Love,
Gill xxx
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Hello Sylvia,
I'm finding all this hot, airless weather exhausting. The ground is completely dry, and some of the pines are dying of thirst. The weather forecast will promise rain, but just a few drops fall. We have our own water supply at the cottage and I'm concerned that it could dry up.
Thank you for the information on melanoma and radiotherapy. How many patients are told about the risks? I don't think it's common knowledge and it should be. Why are so many medics confused about the meaning of 'informed consent'? I was told very little unless I actually raised the question for myself and some of the answers I was offered were far from accurate. It might be wise to record medical interviews with consultants - probably not allowed, or at least frowned upon. I have to say that radiotherapy has always concerned me. I suppose that my biggest worry is the possibility of damaged lung tissue or heart damage. I hadn't really thought about the increased chances of skin cancer. Do you think that people who have been through radiotherapy should wear high factor sun screen for perhaps two or three years after treatment? Maybe they should wear it for the rest of their lives? We need to know more about lasting side effects.
I won't be paying for my prescriptions or for overnight stays in NHS hospitals. It's where I draw the line and others should do the same. If we don't stop this latest mad Tory idea before it becomes fact, we'll only have ourselves to blame. Do you remember Gandhi's Civil Disobedience? This needs trying before there's real civil unrest and violence here. How did England reach this state so quickly? How frail democracy is.
Keep well both of you. I do hope that they'll be some improvement in Raymond's walking at some point. It seems a long time since his surgery.
Love,
Gill xxx
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Hi Gill and Sylvia,
I can imagine how you're feeling. This hot weather is so difficult. In New Jersey, we're not in a draught yet, but we have water restrictions. And of course, people ignore them. I water my vegetable garden on even days like today. The poor plants are drooping so much. My garden is very small with only a few tomato plants and herbs. Usually, I make tomato sauce for the winter, but that won't happen this year. I didn't have the energy in May or June to do any clean up or planting. I only have a few contain plants this year. My son's garden has been supplying me with fresh vegetables! I'm so happy to be eating them again.
I'm awaiting surgery and wish it were this week. But I've decided to spend this week working on stamina. I walk when it's not too hot, though just around my property. I ride my exercise bike too. I'm up to 2 miles. I feel like I have no strength or muscle tone left. My fingernails are a mess also. But they're slowly growing out. The nail beds of a few nails have separated at the end. It's annoying because it hurts when I try to use my fingers to open things or do something. The docs say that they nails will grow out.
The docs also won't give me a tentative return to work date. I guess they're waiting until after surgery. But I can't take much more boredom. I read, write, do jigsaw puzzles, clean, and almost anything else to stay occupied. I'd like to return by late October. But I'm guessing that they want to see how the surgery goes. Although I am told I have lots of patience with children, that patience does not extend to waiting around like I'm doing now.
Take good care. Stay cool and healthy.
Love, Sue
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Hi Sue,
It takes time to regain stamina. Your body's been pushed to the very limits by chemotherapy and needs a lot of time to recover. Little and often at the beginning would probably be best. Don't overdo it! The spirit is willing but the flesh is weak for a while - but I've no doubt you'll get on top of this quickly.
I didn't actually lose any nails, but they developed huge ridges and flaked away at the fingertips, but didn't cause me problems. They're still not completely back to normal, but not as bad as they were immediately following chemotherapy. Most of my hair regrew, but not all and I have some permanent hair loss at the sides towards the top of my head, nobody can see it though as the rest of my hair came back thicker than ever. Eyebrows and eyelashes came back quickly although my eyelashes aren't as thick as they once were - chemotherapy or age?
You'll soon be over surgery and on to the final part of your treatment. I haven't had radiotherapy, but I do know that it can be very tiring, so be kind to yourself. Be patient! Do all your lesson plans a year in advance! Have fun planning a new post cancer wardrobe! Plan next year's holiday! The wardrobe thing is going to be expensive, but I didn't want to see, never mind wear anything that I'd worn for chemotherapy or hospital stays ever again - specially the nightdresses. It's the only time I've ever seen my husband look pleased about me buying new clothes. Being the other side of all this trauma is something to celebrate and you're so nearly there.
Talk again soon.
Love,
Gill xxx
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Hello Morwenna,
I just wanted to let you know that I had a read of my BMA A-Z Family Medical Encyclopedia as I wanted to refresh my memory about melanoma skin cancer. I ws looking at the diagnosis and treatment and I shall post that later today when I am less busy. I thought you would like to know that it says the following.
"Samples from nearby lymph nodes may also be examined; the presence of any cancerous cells in these samples would indicate that the cancer has spread. The melanoma, together with a wide area of surrounding skin, will be removed surgically. Treatment may also include radiotherapy, anti-cancer drugs and immunotherapy".
As stated, when I had the melanoma mole removed from arm, I just had the two surgeries, was told all was fine and that I would have no further treatment. This all happened in 2017.
Sending love and best wishes.
Sylvia xxxx
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